RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

[Guest guest]

I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 andCRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.Ratan.--------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: gnomederwear@...Date: Thu, 17 May 2012 06:20:13 -0400Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

Something interesting about my son I just noticed that I thought I'd

put out there. Back in the fall, his OCD/separation anxiety behaviors

were pretty bad. He's 3.5 and sometimes gets into the bouts of

separation anxiety with his dad. We ran a CBC in January, and he

showed some indications of inflammation, so I started him on some

Advil for a few days. Interestingly, his separation anxiety/OCD with

his dad subsided.

Last few days...it was really, really bad. His dad couldn't even walk

out of the same room as him without him throwing a total fit. He'd

scream this bloodcurdling scream like we were skinning him alive and

then he'd run after his dad, even when his dad was just 6 feet away in

the bathroom. My son was pounding at the bathroom door, screaming

that screeching scream, stomping his feet on the bathroom door. His

dad had gone out the front door to the car for a minute, still within

sight of Ethan, the storm door was closed but it's glass and Ethan

could still see him...and Ethan broke the metal latch right off the

door -- that's how bad this tantrum/screaming was.

I thought PANDAS both times. I did start him on a bit of inositol

today but I gave him some Advil this morning. Last time, I didn't

think of starting him on inositol. We pulled ASO titers and while we

were waiting for them to come back, I put him on anti-inflammatories

(just Children's Advil) for a week and the separation anxiety came to

a grinding halt.

This time, I'm seeing the same thing. Even in the first 24 hours on

anti-inflammatories, he stopped going apesh*t when his dad left the

room. Seems a lot happier and although he did go and look for his dad

after his dad was gone for 5 minutes, he didn't go frantic.

I almost think now it might be inflammation causing this behavior.

Has anyone else seen this correlate with inflammation? This behavior

seems to be responding to anti-inflammatories for him. I wonder

what's causing the inflammation?

[Guest guest]

My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate "advil responder". Separation anxiety is probably his single biggest life-limiting symptom of PANDAS and advil definitely helps. Givien that fact, which was determined years ago, we lean toward a low histamine diet (I say lean to because he's 18 and when he's feeling good he eats like any 18 yr old male) and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis. During spring and fall I will add Loratidine 10mg to his arsenal. In the case of this kid (with high titers!!) abx did nothing but make his stomach an even bigger train wreck. We use OLE as our base antimicrobial and focus nearly everything else we do on inflammation. The result is a kid who just graduated from high school on Monday after years of me being told he'd never

make it through public school. Hang in there, obey your gut and look further into inflammation. To: mb12valtrex Cc: gnomederwear@... Sent: Thursday, May 17, 2012 10:06 AM Subject: RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 andCRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.Ratan.--------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple

Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: gnomederwear@...Date: Thu, 17 May 2012 06:20:13 -0400Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

Something interesting about my son I just noticed that I thought I'd

put out there. Back in the fall, his OCD/separation anxiety behaviors

were pretty bad. He's 3.5 and sometimes gets into the bouts of

separation anxiety with his dad. We ran a CBC in January, and he

showed some indications of inflammation, so I started him on some

Advil for a few days. Interestingly, his separation anxiety/OCD with

his dad subsided.

Last few days...it was really, really bad. His dad couldn't even walk

out of the same room as him without him throwing a total fit. He'd

scream this bloodcurdling scream like we were skinning him alive and

then he'd run after his dad, even when his dad was just 6 feet away in

the bathroom. My son was pounding at the bathroom door, screaming

that screeching scream, stomping his feet on the bathroom door. His

dad had gone out the front door to the car for a minute, still within

sight of Ethan, the storm door was closed but it's glass and Ethan

could still see him...and Ethan broke the metal latch right off the

door -- that's how bad this tantrum/screaming was.

I thought PANDAS both times. I did start him on a bit of inositol

today but I gave him some Advil this morning. Last time, I didn't

think of starting him on inositol. We pulled ASO titers and while we

were waiting for them to come back, I put him on anti-inflammatories

(just Children's Advil) for a week and the separation anxiety came to

a grinding halt.

This time, I'm seeing the same thing. Even in the first 24 hours on

anti-inflammatories, he stopped going apesh*t when his dad left the

room. Seems a lot happier and although he did go and look for his dad

after his dad was gone for 5 minutes, he didn't go frantic.

I almost think now it might be inflammation causing this behavior.

Has anyone else seen this correlate with inflammation? This behavior

seems to be responding to anti-inflammatories for him. I wonder

what's causing the inflammation?

[Guest guest]

This is really really helpful, Ratan and Gayle.  I'm definitely going to look at neuroprotek and i already have OLE in our arsenal.  I'll look at what a low histimine diet entails.  I'm pretty good with following diets.

 

My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate " advil responder " . Separation anxiety is probably his single biggest life-limiting symptom of PANDAS and advil definitely helps. Givien that fact, which was determined years ago, we lean toward a low histamine diet (I say lean to because he's 18 and when he's feeling good he eats like any 18 yr old male) and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis. During spring and fall I will add Loratidine 10mg to his arsenal. In the case of this kid (with high titers!!) abx did nothing but make his stomach an even bigger train wreck. We use OLE as our base antimicrobial and focus nearly everything else we do on inflammation. The result is a kid who just graduated from high school on Monday after years of me being told he'd never

make it through public school. Hang in there, obey your gut and look further into inflammation.

To: mb12valtrex Cc: gnomederwear@...

Sent: Thursday, May 17, 2012 10:06 AM Subject: RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

 

I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 andCRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.

Ratan.--------------Ratan Singh,  Phone: 91 141 2652561, mail: ratanpsych@...

- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of " Nutrition & Supplements in Major Mental Illnesses " ;- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;

- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple

Univ Med School, USA);- www.RegainMentalHealth.com/   www.jaipurmart.com/trade/meditationandhealth

To: mb12valtrex From: gnomederwear@...

Date: Thu, 17 May 2012 06:20:13 -0400Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

 

Something interesting about my son I just noticed that I thought I'd

put out there. Back in the fall, his OCD/separation anxiety behaviors

were pretty bad. He's 3.5 and sometimes gets into the bouts of

separation anxiety with his dad. We ran a CBC in January, and he

showed some indications of inflammation, so I started him on some

Advil for a few days. Interestingly, his separation anxiety/OCD with

his dad subsided.

Last few days...it was really, really bad. His dad couldn't even walk

out of the same room as him without him throwing a total fit. He'd

scream this bloodcurdling scream like we were skinning him alive and

then he'd run after his dad, even when his dad was just 6 feet away in

the bathroom. My son was pounding at the bathroom door, screaming

that screeching scream, stomping his feet on the bathroom door. His

dad had gone out the front door to the car for a minute, still within

sight of Ethan, the storm door was closed but it's glass and Ethan

could still see him...and Ethan broke the metal latch right off the

door -- that's how bad this tantrum/screaming was.

I thought PANDAS both times. I did start him on a bit of inositol

today but I gave him some Advil this morning. Last time, I didn't

think of starting him on inositol. We pulled ASO titers and while we

were waiting for them to come back, I put him on anti-inflammatories

(just Children's Advil) for a week and the separation anxiety came to

a grinding halt.

This time, I'm seeing the same thing. Even in the first 24 hours on

anti-inflammatories, he stopped going apesh*t when his dad left the

room. Seems a lot happier and although he did go and look for his dad

after his dad was gone for 5 minutes, he didn't go frantic.

I almost think now it might be inflammation causing this behavior.

Has anyone else seen this correlate with inflammation? This behavior

seems to be responding to anti-inflammatories for him. I wonder

what's causing the inflammation?

[Guest guest]

Thank you so much Gayle and Alberta for your posts. Gayle,you gave me so much

hope. This inflammation and pandas/pans has really exhausted me. I have been

struggling with it at least for the last 5 months. I certainly think that there

is overlap between ocd and anxiety caused by gut bacteria and strep and

mycoplasma etc. Alberta, I actually have the same feelings regarding

inflammation and still am confused about the pandas/pans diagnosis. I began

suspecting pandas when I first heard about it. I had to look back and recalled a

lot of episodes where he will have acute onset of anxiety especially separation

anxiety and ocd. Whatever motor stuff he had, we called it stimming. Then the

episodes partially resolve and he would be left with some minimal baseline

anxiety. He had several ear infections as a child. Now I am not so sure if they

were really ear infections or viral illnesses-pediatricians tend to overdiagnose

ear infections and mess up children's gut with antibiotics. That was about three

years ago and then anxiety reduced a lot. But then for two years, my son didn't

really have any respiratory infections. Last year in january, he had

appendicitis with appendectomy and after the antibiotic course was over, he

developed tantrums and ocd. Then in october 2011, we put him on gcmaf and within

a month, he had severe ocd, sensory issues, tantrums but no separation anxiety.

We did few rounds of vancomycin thinking it was clostridia but anxiety kept

coming back. I believe gcmaf was causing inflammation. In february, he had a

viral infection and then we were hit with the worst anxiety ever. He had acute

onset of anxiety, tics, mood swings, frequent urination, started walking on

heels, couldn't hold even a fork to eat. He would sit on bed for several minutes

before falling asleep and even when he did, he would sleep in odd positions. His

strep throat swab was negative and he has no antibodies. Looking back I see that

he always reacted this way in a milder form whenever he had an infection and

this time the reaction was severe as gcmaf caused inflammation as well. The

theory behind using antimicrobials both prescription and naturals is to keep

infection under control so it doesn't trigger more inflammation. But what works

for most kids is antiiinflammatory treatments. This is the tough part for me. My

son has bad phenol sensitivity and most of the natural antiinflammatories are

phenolic. He was a curcumin responder and still responds for the first few days

but then gets severe reactions. He responds to advil but we cannot use it often

as he has bad acid reflux. Now I have him on pepcid which is allowing me to use

advil once a day. This is not the right dose but so far this is what he can

tolerate. I am exploring some other options to reduce inflammation and will

report once get more info on them. Neuroprotek was recommended but can't recall

why we didn't use it, probably because of one of the ingredients. Will look into

it again. Inositol seems promising and really want to try it. Sorry I went into

this much detail about my kid. Just felt like sharing what we have been thru in

the last few months and why we concluded that there is element of pans.

is

[Guest guest]

Gayle,

Can you share some details on Low histamine diet? I looked it up and found

several lists but not sure which one is accurate. Out of the list that I found,

the only bad food that my son eats is the egg which we finally put back in his

diet as there weren't many protein options available for him and he was really

having hypoglycemia at school on gfcf breakfast. I would really appreciate your

help.

Thanks

is

>

> My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate

" advil responder " . Separation anxiety is probably his single biggest

life-limiting symptom of PANDAS and advil definitely helps. Givien that fact,

which was determined years ago, we lean toward a low histamine diet (I say lean

to because he's 18 and when he's feeling good he eats like any 18 yr old male)

and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis.

During spring and fall I will add Loratidine 10mg to his arsenal. In the case of

this kid (with high titers!!) abx did nothing but make his stomach an even

bigger train wreck. We use OLE as our base antimicrobial and focus nearly

everything else we do on inflammation. The result is a kid who just graduated

from high school on Monday after years of me being told he'd never make it

through public school. 

>

> Hang in there, obey your gut and look further into inflammation.

>

>

> ________________________________

>

> To: mb12valtrex

> Cc: gnomederwear@...

> Sent: Thursday, May 17, 2012 10:06 AM

> Subject: RE: Anti-inflammatories helping with OCD/separation

anxiety symptoms--and homocysteine

>

>

>  

> I will like to see his level of serum homocysteine. It is a good indicator of

inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 and

> CRP should be 3 or below. Higher values indicate inflammation possibly in

brain. Inflammation can be caused by infection or exotoxins or endotoxins.

> Ratan.

> --------------

>

> Ratan Singh,  Phone: 91 141 2652561, mail: ratanpsych@...

> - Certificate in Food & Nutrition; Diploma in Nutrition and Health Education;

Life Member, Nutrition Soc. of India; Member ISOM

> - Author of " Nutrition & Supplements in Major Mental Illnesses " ;

> - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;

> - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ

Med School, USA);

> - www.RegainMentalHealth.com/   www.jaipurmart.com/trade/meditationandhealth

>

>

>

> ________________________________

> To: mb12valtrex

> From: gnomederwear@...

> Date: Thu, 17 May 2012 06:20:13 -0400

> Subject: Anti-inflammatories helping with OCD/separation anxiety

symptoms

>

>  

> Something interesting about my son I just noticed that I thought I'd

> put out there. Back in the fall, his OCD/separation anxiety behaviors

> were pretty bad. He's 3.5 and sometimes gets into the bouts of

> separation anxiety with his dad. We ran a CBC in January, and he

> showed some indications of inflammation, so I started him on some

> Advil for a few days. Interestingly, his separation anxiety/OCD with

> his dad subsided.

>

> Last few days...it was really, really bad. His dad couldn't even walk

> out of the same room as him without him throwing a total fit. He'd

> scream this bloodcurdling scream like we were skinning him alive and

> then he'd run after his dad, even when his dad was just 6 feet away in

> the bathroom. My son was pounding at the bathroom door, screaming

> that screeching scream, stomping his feet on the bathroom door. His

> dad had gone out the front door to the car for a minute, still within

> sight of Ethan, the storm door was closed but it's glass and Ethan

> could still see him...and Ethan broke the metal latch right off the

> door -- that's how bad this tantrum/screaming was.

>

> I thought PANDAS both times. I did start him on a bit of inositol

> today but I gave him some Advil this morning. Last time, I didn't

> think of starting him on inositol. We pulled ASO titers and while we

> were waiting for them to come back, I put him on anti-inflammatories

> (just Children's Advil) for a week and the separation anxiety came to

> a grinding halt.

>

> This time, I'm seeing the same thing. Even in the first 24 hours on

> anti-inflammatories, he stopped going apesh*t when his dad left the

> room. Seems a lot happier and although he did go and look for his dad

> after his dad was gone for 5 minutes, he didn't go frantic.

>

> I almost think now it might be inflammation causing this behavior.

> Has anyone else seen this correlate with inflammation? This behavior

> seems to be responding to anti-inflammatories for him. I wonder

> what's causing the inflammation?

>

[Guest guest]

is,In our case, I could simply limit his consumption of foods that made it to any of the high histamine lists that I had at the time. For example, that kid will eat his body weight in strawberries. I'd tell him to put a big handful in a dessert cup instead of taking the giant serving bowl full to his room...where their consumption was assured. If we had saur kraut at dinner (which he loves) the strawberries would miraculously disappear to the garage refrigerator until the next day. A friend of mine at that time had a dog with a mast cell tumor (histamine driven). Her vet told her that the dog could have any meat as long as it was cooked and immediately served but letting it sit (even refrigerated) would skyrocket the histamine content. I was never able to confirm or deny

this through internet search but my son was so unspeakably sick at that time that I just adopted the practice ending leftovers forever around here. We (my adult daughter who is a nurse) and I did see a change in him with these small diet changes. Put that together with NeuroProtek and now occasional advil and we're living life again.Of note also is that my son has had three massive exacerbations (age 8, 11, 15). All three started like clockwork 5 days after what was thought to be a stomach virus. He was 11 before I found PANDAS online and insisted strep titers be drawn though the kid had NEVER been diagnosed with strep in his entire life (should have been a clue right there). His ASO and AntiDNAse were off the charts earning him the PANDAS diagnosis but this is a viral kid if ever there was one. When it happened again at 15 we saw Dr. Trifiletti who tested for mycoplasma as well as strep and sure enough he

was positive for that too (and in a big way) with no symptoms whatsoever. Just my opinion but as parents in looking at the symptoms your kid is exhibiting, if it looks like a duck, walks like a duck and quacks like a duck, it's probably a duck. Absence of what the medical establishment CURRENTLY considers confirmatory labwork doesn't mean your kid isn't suffering from the same thing my kid suffered unspeakably with. In five years they'll have a whole new set of diagnostic criteria...none of us can wait around for the nod from the docs that, indeed, it turns out our kids really are sick, it's PANS and here's the treatment. We have to plow forward, fill our monstrous sized dry erase boards with our homemade flow charts of treatment options. That's what I did...several huge boards at one time. We have been blessed with some of the best docs in the business but there was no silver bullet for my son, it was done is steps and stages. There is so little that

we haven't tried...many thousands of dollars. I used to be secretly jealous of those families that had nearly overnight success with a course of zith. Our success was built in stages. Cleaning up the diet, as much rest as possible, keeping stress to a minimum whenever possible, rescue supps/meds for periods of crisis, supportive supps, OLE and anti-inflammatories...and above everything else a faith that God's hand is on your child and on you.Gayle To: mb12valtrex Sent:

Thursday, May 17, 2012 10:41 PM Subject: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle,

Can you share some details on Low histamine diet? I looked it up and found several lists but not sure which one is accurate. Out of the list that I found, the only bad food that my son eats is the egg which we finally put back in his diet as there weren't many protein options available for him and he was really having hypoglycemia at school on gfcf breakfast. I would really appreciate your help.

Thanks

is

>

> My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate "advil responder". Separation anxiety is probably his single biggest life-limiting symptom of PANDAS and advil definitely helps. Givien that fact, which was determined years ago, we lean toward a low histamine diet (I say lean to because he's 18 and when he's feeling good he eats like any 18 yr old male) and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis. During spring and fall I will add Loratidine 10mg to his arsenal. In the case of this kid (with high titers!!) abx did nothing but make his stomach an even bigger train wreck. We use OLE as our base antimicrobial and focus nearly everything else we do on inflammation. The result is a kid who just graduated from high school on Monday after years of me being told he'd never make it through public school.Â

>

> Hang in there, obey your gut and look further into inflammation.

>

>

> ________________________________

>

> To: mb12valtrex

> Cc: gnomederwear@...

> Sent: Thursday, May 17, 2012 10:06 AM

> Subject: RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

>

>

> Â

> I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 and

> CRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.

> Ratan.

> --------------

>

> Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...

> - Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM

> - Author of "Nutrition & Supplements in Major Mental Illnesses";

> - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;

> - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);

> - www.RegainMentalHealth.com/Â Â www.jaipurmart.com/trade/meditationandhealth

>

>

>

> ________________________________

> To: mb12valtrex

> From: gnomederwear@...

> Date: Thu, 17 May 2012 06:20:13 -0400

> Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

>

> Â

> Something interesting about my son I just noticed that I thought I'd

> put out there. Back in the fall, his OCD/separation anxiety behaviors

> were pretty bad. He's 3.5 and sometimes gets into the bouts of

> separation anxiety with his dad. We ran a CBC in January, and he

> showed some indications of inflammation, so I started him on some

> Advil for a few days. Interestingly, his separation anxiety/OCD with

> his dad subsided.

>

> Last few days...it was really, really bad. His dad couldn't even walk

> out of the same room as him without him throwing a total fit. He'd

> scream this bloodcurdling scream like we were skinning him alive and

> then he'd run after his dad, even when his dad was just 6 feet away in

> the bathroom. My son was pounding at the bathroom door, screaming

> that screeching scream, stomping his feet on the bathroom door. His

> dad had gone out the front door to the car for a minute, still within

> sight of Ethan, the storm door was closed but it's glass and Ethan

> could still see him...and Ethan broke the metal latch right off the

> door -- that's how bad this tantrum/screaming was.

>

> I thought PANDAS both times. I did start him on a bit of inositol

> today but I gave him some Advil this morning. Last time, I didn't

> think of starting him on inositol. We pulled ASO titers and while we

> were waiting for them to come back, I put him on anti-inflammatories

> (just Children's Advil) for a week and the separation anxiety came to

> a grinding halt.

>

> This time, I'm seeing the same thing. Even in the first 24 hours on

> anti-inflammatories, he stopped going apesh*t when his dad left the

> room. Seems a lot happier and although he did go and look for his dad

> after his dad was gone for 5 minutes, he didn't go frantic.

>

> I almost think now it might be inflammation causing this behavior.

> Has anyone else seen this correlate with inflammation? This behavior

> seems to be responding to anti-inflammatories for him. I wonder

> what's causing the inflammation?

>

[Guest guest]

Did you try your other stuff before going for low histamine diet? May be you other stuff would be enough help and you could ignore the protein and folic acidrestrictions needed in low histamine diet.And by "inflammation" you mean gut inflammation or cellular inflammation in the brain?By the way, are the following prescription medicines: Advil, loratidine, NeuroProtek?Ratan.-----------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: alexis_d3378@...Date: Fri, 18 May 2012 02:41:09 +0000Subject: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle,

Can you share some details on Low histamine diet? I looked it up and found several lists but not sure which one is accurate. Out of the list that I found, the only bad food that my son eats is the egg which we finally put back in his diet as there weren't many protein options available for him and he was really having hypoglycemia at school on gfcf breakfast. I would really appreciate your help.

Thanks

is

>

> My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate "advil responder". Separation anxiety is probably his single biggest life-limiting symptom of PANDAS and advil definitely helps. Givien that fact, which was determined years ago, we lean toward a low histamine diet (I say lean to because he's 18 and when he's feeling good he eats like any 18 yr old male) and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis. During spring and fall I will add Loratidine 10mg to his arsenal. In the case of this kid (with high titers!!) abx did nothing but make his stomach an even bigger train wreck. We use OLE as our base antimicrobial and focus nearly everything else we do on inflammation. The result is a kid who just graduated from high school on Monday after years of me being told he'd never make it through public school.Â

>

> Hang in there, obey your gut and look further into inflammation.

>

>

> ________________________________

>

> To: mb12valtrex

> Cc: gnomederwear@...

> Sent: Thursday, May 17, 2012 10:06 AM

> Subject: RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

>

>

> Â

> I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 and

> CRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.

> Ratan.

> --------------

>

> Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...

> - Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM

> - Author of "Nutrition & Supplements in Major Mental Illnesses";

> - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;

> - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);

> - www.RegainMentalHealth.com/Â Â www.jaipurmart.com/trade/meditationandhealth

>

>

>

> ________________________________

> To: mb12valtrex

> From: gnomederwear@...

> Date: Thu, 17 May 2012 06:20:13 -0400

> Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

>

> Â

> Something interesting about my son I just noticed that I thought I'd

> put out there. Back in the fall, his OCD/separation anxiety behaviors

> were pretty bad. He's 3.5 and sometimes gets into the bouts of

> separation anxiety with his dad. We ran a CBC in January, and he

> showed some indications of inflammation, so I started him on some

> Advil for a few days. Interestingly, his separation anxiety/OCD with

> his dad subsided.

>

> Last few days...it was really, really bad. His dad couldn't even walk

> out of the same room as him without him throwing a total fit. He'd

> scream this bloodcurdling scream like we were skinning him alive and

> then he'd run after his dad, even when his dad was just 6 feet away in

> the bathroom. My son was pounding at the bathroom door, screaming

> that screeching scream, stomping his feet on the bathroom door. His

> dad had gone out the front door to the car for a minute, still within

> sight of Ethan, the storm door was closed but it's glass and Ethan

> could still see him...and Ethan broke the metal latch right off the

> door -- that's how bad this tantrum/screaming was.

>

> I thought PANDAS both times. I did start him on a bit of inositol

> today but I gave him some Advil this morning. Last time, I didn't

> think of starting him on inositol. We pulled ASO titers and while we

> were waiting for them to come back, I put him on anti-inflammatories

> (just Children's Advil) for a week and the separation anxiety came to

> a grinding halt.

>

> This time, I'm seeing the same thing. Even in the first 24 hours on

> anti-inflammatories, he stopped going apesh*t when his dad left the

> room. Seems a lot happier and although he did go and look for his dad

> after his dad was gone for 5 minutes, he didn't go frantic.

>

> I almost think now it might be inflammation causing this behavior.

> Has anyone else seen this correlate with inflammation? This behavior

> seems to be responding to anti-inflammatories for him. I wonder

> what's causing the inflammation?

>

[Guest guest]

All are over the counter. We actually supplement folic acid and all of his docs have always pushed protein because he became so emaciated with each PANDAS episode. I do think the diet modifications helped but NeuroProtek was a big gun and so was/is advil. To: mb12valtrex Sent: Friday, May 18, 2012 10:57 AM Subject: RE: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Did you try your other stuff before going for low histamine diet? May be you other stuff would be enough help and you could ignore the protein and folic acidrestrictions needed in low histamine diet.And by "inflammation" you mean gut inflammation or cellular inflammation in the brain?By the way, are the following prescription medicines: Advil, loratidine, NeuroProtek?Ratan.-----------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology,

Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: alexis_d3378@...Date: Fri, 18 May 2012 02:41:09 +0000Subject: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle,

Can you share some details on Low histamine diet? I looked it up and found several lists but not sure which one is accurate. Out of the list that I found, the only bad food that my son eats is the egg which we finally put back in his diet as there weren't many protein options available for him and he was really having hypoglycemia at school on gfcf breakfast. I would really appreciate your help.

Thanks

is

>

> My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate "advil responder". Separation anxiety is probably his single biggest life-limiting symptom of PANDAS and advil definitely helps. Givien that fact, which was determined years ago, we lean toward a low histamine diet (I say lean to because he's 18 and when he's feeling good he eats like any 18 yr old male) and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis. During spring and fall I will add Loratidine 10mg to his arsenal. In the case of this kid (with high titers!!) abx did nothing but make his stomach an even bigger train wreck. We use OLE as our base antimicrobial and focus nearly everything else we do on inflammation. The result is a kid who just graduated from high school on Monday after years of me being told he'd never make it through public school.Â

>

> Hang in there, obey your gut and look further into inflammation.

>

>

> ________________________________

>

> To: mb12valtrex

> Cc: gnomederwear@...

> Sent: Thursday, May 17, 2012 10:06 AM

> Subject: RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

>

>

> Â

> I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 and

> CRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.

> Ratan.

> --------------

>

> Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...

> - Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM

> - Author of "Nutrition & Supplements in Major Mental Illnesses";

> - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;

> - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);

> - www.RegainMentalHealth.com/Â Â www.jaipurmart.com/trade/meditationandhealth

>

>

>

> ________________________________

> To: mb12valtrex

> From: gnomederwear@...

> Date: Thu, 17 May 2012 06:20:13 -0400

> Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

>

> Â

> Something interesting about my son I just noticed that I thought I'd

> put out there. Back in the fall, his OCD/separation anxiety behaviors

> were pretty bad. He's 3.5 and sometimes gets into the bouts of

> separation anxiety with his dad. We ran a CBC in January, and he

> showed some indications of inflammation, so I started him on some

> Advil for a few days. Interestingly, his separation anxiety/OCD with

> his dad subsided.

>

> Last few days...it was really, really bad. His dad couldn't even walk

> out of the same room as him without him throwing a total fit. He'd

> scream this bloodcurdling scream like we were skinning him alive and

> then he'd run after his dad, even when his dad was just 6 feet away in

> the bathroom. My son was pounding at the bathroom door, screaming

> that screeching scream, stomping his feet on the bathroom door. His

> dad had gone out the front door to the car for a minute, still within

> sight of Ethan, the storm door was closed but it's glass and Ethan

> could still see him...and Ethan broke the metal latch right off the

> door -- that's how bad this tantrum/screaming was.

>

> I thought PANDAS both times. I did start him on a bit of inositol

> today but I gave him some Advil this morning. Last time, I didn't

> think of starting him on inositol. We pulled ASO titers and while we

> were waiting for them to come back, I put him on anti-inflammatories

> (just Children's Advil) for a week and the separation anxiety came to

> a grinding halt.

>

> This time, I'm seeing the same thing. Even in the first 24 hours on

> anti-inflammatories, he stopped going apesh*t when his dad left the

> room. Seems a lot happier and although he did go and look for his dad

> after his dad was gone for 5 minutes, he didn't go frantic.

>

> I almost think now it might be inflammation causing this behavior.

> Has anyone else seen this correlate with inflammation? This behavior

> seems to be responding to anti-inflammatories for him. I wonder

> what's causing the inflammation?

>

[Guest guest]

Thanks for clarification Gowens.I live in India. Therefore I am not familiar with all the "over the counter" stuff in US.Ratan.Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: gowens_lmt@...Date: Fri, 18 May 2012 08:01:09 -0700Subject: Re: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

All are over the counter. We actually supplement folic acid and all of his docs have always pushed protein because he became so emaciated with each PANDAS episode. I do think the diet modifications helped but NeuroProtek was a big gun and so was/is advil. To: mb12valtrex Sent: Friday, May 18, 2012 10:57 AM Subject: RE: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Did you try your other stuff before going for low histamine diet? May be you other stuff would be enough help and you could ignore the protein and folic acidrestrictions needed in low histamine diet.And by "inflammation" you mean gut inflammation or cellular inflammation in the brain?By the way, are the following prescription medicines: Advil, loratidine, NeuroProtek?Ratan.-----------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology,

Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: alexis_d3378@...Date: Fri, 18 May 2012 02:41:09 +0000Subject: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle,

Can you share some details on Low histamine diet? I looked it up and found several lists but not sure which one is accurate. Out of the list that I found, the only bad food that my son eats is the egg which we finally put back in his diet as there weren't many protein options available for him and he was really having hypoglycemia at school on gfcf breakfast. I would really appreciate your help.

Thanks

is

>

> My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate "advil responder". Separation anxiety is probably his single biggest life-limiting symptom of PANDAS and advil definitely helps. Givien that fact, which was determined years ago, we lean toward a low histamine diet (I say lean to because he's 18 and when he's feeling good he eats like any 18 yr old male) and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis. During spring and fall I will add Loratidine 10mg to his arsenal. In the case of this kid (with high titers!!) abx did nothing but make his stomach an even bigger train wreck. We use OLE as our base antimicrobial and focus nearly everything else we do on inflammation. The result is a kid who just graduated from high school on Monday after years of me being told he'd never make it through public school.Â

>

> Hang in there, obey your gut and look further into inflammation.

>

>

> ________________________________

>

> To: mb12valtrex

> Cc: gnomederwear@...

> Sent: Thursday, May 17, 2012 10:06 AM

> Subject: RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

>

>

> Â

> I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 and

> CRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.

> Ratan.

> --------------

>

> Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...

> - Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM

> - Author of "Nutrition & Supplements in Major Mental Illnesses";

> - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;

> - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);

> - www.RegainMentalHealth.com/Â Â www.jaipurmart.com/trade/meditationandhealth

>

>

>

> ________________________________

> To: mb12valtrex

> From: gnomederwear@...

> Date: Thu, 17 May 2012 06:20:13 -0400

> Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

>

> Â

> Something interesting about my son I just noticed that I thought I'd

> put out there. Back in the fall, his OCD/separation anxiety behaviors

> were pretty bad. He's 3.5 and sometimes gets into the bouts of

> separation anxiety with his dad. We ran a CBC in January, and he

> showed some indications of inflammation, so I started him on some

> Advil for a few days. Interestingly, his separation anxiety/OCD with

> his dad subsided.

>

> Last few days...it was really, really bad. His dad couldn't even walk

> out of the same room as him without him throwing a total fit. He'd

> scream this bloodcurdling scream like we were skinning him alive and

> then he'd run after his dad, even when his dad was just 6 feet away in

> the bathroom. My son was pounding at the bathroom door, screaming

> that screeching scream, stomping his feet on the bathroom door. His

> dad had gone out the front door to the car for a minute, still within

> sight of Ethan, the storm door was closed but it's glass and Ethan

> could still see him...and Ethan broke the metal latch right off the

> door -- that's how bad this tantrum/screaming was.

>

> I thought PANDAS both times. I did start him on a bit of inositol

> today but I gave him some Advil this morning. Last time, I didn't

> think of starting him on inositol. We pulled ASO titers and while we

> were waiting for them to come back, I put him on anti-inflammatories

> (just Children's Advil) for a week and the separation anxiety came to

> a grinding halt.

>

> This time, I'm seeing the same thing. Even in the first 24 hours on

> anti-inflammatories, he stopped going apesh*t when his dad left the

> room. Seems a lot happier and although he did go and look for his dad

> after his dad was gone for 5 minutes, he didn't go frantic.

>

> I almost think now it might be inflammation causing this behavior.

> Has anyone else seen this correlate with inflammation? This behavior

> seems to be responding to anti-inflammatories for him. I wonder

> what's causing the inflammation?

>

[Guest guest]

Ruth, We saw Dr. T, Payne and just to name a few. On labs he was not particularly sensitive to any one virus but as in the population of older kids, viruses fly around faster than bacterial infections. Every little bug that would go through the school would have a trickle down effect on him with small scale spikes in his anxiety, ocd and separation issues. Three times in his life he actually got the virus and well it all went irrevocably south within days after. None of his docs ever openly considered IVIG or discussed it with me. He's a very good responder once you figure out what he needs and I believe that has morphed slightly as he's aged. Antibiotics were a true nightmare for us..he took so many back to back courses for so long including the

Saving Sammy dose of augmentin. He still cannot gain weight, he's nothing but muscle and bone, no adipose tissue at all. Bonus, when he takes all 4 of his OLE each day his skins clears right up too. Here's the short list of trials without going back and getting out my journals...which puts a knot in my throat.Homeopathy (twice)TCMTruehopeRx Antivirals (colossally awful)Rx Antifungals (this was like a silver bullet during the middle school exacerbation)Rx SSRI (no change)Rx Antibiotics (Pen VK, Azith, Augmentin, Biaxin)Prilosec (I think now this actually made his reflux worse, that he might have been lacking acid, not having too much of

it)Throughout all of this we were utilizing elements of the DAN! protocol. In fact things like epsom salt baths, CLO, probiotics, organic meats, cleaner-than-most-kids diet have been in our world since he was diagnosed in 2007.He weighs 130lbs and takes the following everyday:OLE 750 mg X 4NeuroProtek X 6D3 2000 iu (4000 iu in winter)FolaPro X 1Methyl B12 X 1Super B-zyme X 1Vit C 250mg X 2 (depending on immune state..more during any immune challenge)Lugols 2% X 3 dropsCoQ10 200mg X 1B2 100mg X 1Holy Basil 400mg X 1Loratidine 10mg X 1 (spring and fall)I told him I can't make the list of supps any smaller at this point in time. Maybe later as he matures but this is as short of a list as we

can go currently. He groans about it sometimes but he remembers the hell he went through and always takes his supps once he's expressed a moment of teen angst about it. To: "mb12valtrex " <mb12valtrex > Sent: Friday, May 18, 2012 7:31 PM Subject: Re: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle - Thanks so much for your story. It sounds way too much like ours. I was wondering... you said your son was a viral kid. WHich viruses did he have? Also, other than the diet changes, what treatment did you use? I'm assuming antibiotics. But, did you also do IVIG? Anything else?RuthSent from my iPad

is,In our case, I could simply limit his consumption of foods that made it to any of the high histamine lists that I had at the time. For example, that kid will eat his body weight in strawberries. I'd tell him to put a big handful in a dessert cup instead of taking the giant serving bowl full to his room...where their consumption was assured. If we had saur kraut at dinner (which he loves) the strawberries would miraculously disappear to the garage refrigerator until the next day. A friend of mine at that time had a dog with a mast cell tumor (histamine driven). Her vet told her that the dog could have any meat as long as it was cooked and immediately served but letting it sit (even refrigerated) would skyrocket the histamine content. I

was never able to confirm or deny

this through internet search but my son was so unspeakably sick at that time that I just adopted the practice ending leftovers forever around here. We (my adult daughter who is a nurse) and I did see a change in him with these small diet changes. Put that together with NeuroProtek and now occasional advil and we're living life again.Of note also is that my son has had three massive exacerbations (age 8, 11, 15). All three started like clockwork 5 days after what was thought to be a stomach virus. He was 11 before I found PANDAS online and insisted strep titers be drawn though the kid had NEVER been diagnosed with strep in his entire life (should have been a clue right there). His ASO and AntiDNAse were off the charts earning him the PANDAS diagnosis but this is a viral kid if ever there was one. When it happened again at 15 we saw Dr. Trifiletti who tested for mycoplasma as well as strep and sure enough he

was positive for that too (and in a big way) with no symptoms whatsoever. Just my opinion but as parents in looking at the symptoms your kid is exhibiting, if it looks like a duck, walks like a duck and quacks like a duck, it's probably a duck. Absence of what the medical establishment CURRENTLY considers confirmatory labwork doesn't mean your kid isn't suffering from the same thing my kid suffered unspeakably with. In five years they'll have a whole new set of diagnostic criteria...none of us can wait around for the nod from the docs that, indeed, it turns out our kids really are sick, it's PANS and here's the treatment. We have to plow forward, fill our monstrous sized dry erase boards with our homemade flow charts of treatment options. That's what I did...several huge boards at one time. We have been blessed with some of the best docs in the business but there was no silver bullet for my son, it was done is steps and stages. There is so little that

we haven't tried...many thousands of dollars. I used to be secretly jealous of those families that had nearly overnight success with a course of zith. Our success was built in stages. Cleaning up the diet, as much rest as possible, keeping stress to a minimum whenever possible, rescue supps/meds for periods of crisis, supportive supps, OLE and anti-inflammatories...and above everything else a faith that God's hand is on your child and on you.Gayle To: mb12valtrex Sent:

Thursday, May 17, 2012 10:41 PM Subject: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle,

Can you share some details on Low histamine diet? I looked it up and found several lists but not sure which one is accurate. Out of the list that I found, the only bad food that my son eats is the egg which we finally put back in his diet as there weren't many protein options available for him and he was really having hypoglycemia at school on gfcf breakfast. I would really appreciate your help.

Thanks

is

>

> My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate "advil responder". Separation anxiety is probably his single biggest life-limiting symptom of PANDAS and advil definitely helps. Givien that fact, which was determined years ago, we lean toward a low histamine diet (I say lean to because he's 18 and when he's feeling good he eats like any 18 yr old male) and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis. During spring and fall I will add Loratidine 10mg to his arsenal. In the case of this kid (with high titers!!) abx did nothing but make his stomach an even bigger train wreck. We use OLE as our base antimicrobial and focus nearly everything else we do on inflammation. The result is a kid who just graduated from high school on Monday after years of me being told he'd never make it through public school.Â

>

> Hang in there, obey your gut and look further into inflammation.

>

>

> ________________________________

>

> To: mb12valtrex

> Cc: gnomederwear@...

> Sent: Thursday, May 17, 2012 10:06 AM

> Subject: RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

>

>

> Â

> I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 and

> CRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.

> Ratan.

> --------------

>

> Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...

> - Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM

> - Author of "Nutrition & Supplements in Major Mental Illnesses";

> - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;

> - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);

> - www.RegainMentalHealth.com/Â Â www.jaipurmart.com/trade/meditationandhealth

>

>

>

> ________________________________

> To: mb12valtrex

> From: gnomederwear@...

> Date: Thu, 17 May 2012 06:20:13 -0400

> Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

>

> Â

> Something interesting about my son I just noticed that I thought I'd

> put out there. Back in the fall, his OCD/separation anxiety behaviors

> were pretty bad. He's 3.5 and sometimes gets into the bouts of

> separation anxiety with his dad. We ran a CBC in January, and he

> showed some indications of inflammation, so I started him on some

> Advil for a few days. Interestingly, his separation anxiety/OCD with

> his dad subsided.

>

> Last few days...it was really, really bad. His dad couldn't even walk

> out of the same room as him without him throwing a total fit. He'd

> scream this bloodcurdling scream like we were skinning him alive and

> then he'd run after his dad, even when his dad was just 6 feet away in

> the bathroom. My son was pounding at the bathroom door, screaming

> that screeching scream, stomping his feet on the bathroom door. His

> dad had gone out the front door to the car for a minute, still within

> sight of Ethan, the storm door was closed but it's glass and Ethan

> could still see him...and Ethan broke the metal latch right off the

> door -- that's how bad this tantrum/screaming was.

>

> I thought PANDAS both times. I did start him on a bit of inositol

> today but I gave him some Advil this morning. Last time, I didn't

> think of starting him on inositol. We pulled ASO titers and while we

> were waiting for them to come back, I put him on anti-inflammatories

> (just Children's Advil) for a week and the separation anxiety came to

> a grinding halt.

>

> This time, I'm seeing the same thing. Even in the first 24 hours on

> anti-inflammatories, he stopped going apesh*t when his dad left the

> room. Seems a lot happier and although he did go and look for his dad

> after his dad was gone for 5 minutes, he didn't go frantic.

>

> I almost think now it might be inflammation causing this behavior.

> Has anyone else seen this correlate with inflammation? This behavior

> seems to be responding to anti-inflammatories for him. I wonder

> what's causing the inflammation?

>

[Guest guest]

Gayle - Thanks so much for your story. It sounds way too much like ours. I was wondering... you said your son was a viral kid. WHich viruses did he have? Also, other than the diet changes, what treatment did you use? I'm assuming antibiotics. But, did you also do IVIG? Anything else?RuthSent from my iPad

is,In our case, I could simply limit his consumption of foods that made it to any of the high histamine lists that I had at the time. For example, that kid will eat his body weight in strawberries. I'd tell him to put a big handful in a dessert cup instead of taking the giant serving bowl full to his room...where their consumption was assured. If we had saur kraut at dinner (which he loves) the strawberries would miraculously disappear to the garage refrigerator until the next day. A friend of mine at that time had a dog with a mast cell tumor (histamine driven). Her vet told her that the dog could have any meat as long as it was cooked and immediately served but letting it sit (even refrigerated) would skyrocket the histamine content. I was never able to confirm or deny

this through internet search but my son was so unspeakably sick at that time that I just adopted the practice ending leftovers forever around here. We (my adult daughter who is a nurse) and I did see a change in him with these small diet changes. Put that together with NeuroProtek and now occasional advil and we're living life again.Of note also is that my son has had three massive exacerbations (age 8, 11, 15). All three started like clockwork 5 days after what was thought to be a stomach virus. He was 11 before I found PANDAS online and insisted strep titers be drawn though the kid had NEVER been diagnosed with strep in his entire life (should have been a clue right there). His ASO and AntiDNAse were off the charts earning him the PANDAS diagnosis but this is a viral kid if ever there was one. When it happened again at 15 we saw Dr. Trifiletti who tested for mycoplasma as well as strep and sure enough he

was positive for that too (and in a big way) with no symptoms whatsoever. Just my opinion but as parents in looking at the symptoms your kid is exhibiting, if it looks like a duck, walks like a duck and quacks like a duck, it's probably a duck. Absence of what the medical establishment CURRENTLY considers confirmatory labwork doesn't mean your kid isn't suffering from the same thing my kid suffered unspeakably with. In five years they'll have a whole new set of diagnostic criteria...none of us can wait around for the nod from the docs that, indeed, it turns out our kids really are sick, it's PANS and here's the treatment. We have to plow forward, fill our monstrous sized dry erase boards with our homemade flow charts of treatment options. That's what I did...several huge boards at one time. We have been blessed with some of the best docs in the business but there was no silver bullet for my son, it was done is steps and stages. There is so little that

we haven't tried...many thousands of dollars. I used to be secretly jealous of those families that had nearly overnight success with a course of zith. Our success was built in stages. Cleaning up the diet, as much rest as possible, keeping stress to a minimum whenever possible, rescue supps/meds for periods of crisis, supportive supps, OLE and anti-inflammatories...and above everything else a faith that God's hand is on your child and on you.Gayle To: mb12valtrex Sent:

Thursday, May 17, 2012 10:41 PM Subject: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle,

Can you share some details on Low histamine diet? I looked it up and found several lists but not sure which one is accurate. Out of the list that I found, the only bad food that my son eats is the egg which we finally put back in his diet as there weren't many protein options available for him and he was really having hypoglycemia at school on gfcf breakfast. I would really appreciate your help.

Thanks

is

>

> My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate "advil responder". Separation anxiety is probably his single biggest life-limiting symptom of PANDAS and advil definitely helps. Givien that fact, which was determined years ago, we lean toward a low histamine diet (I say lean to because he's 18 and when he's feeling good he eats like any 18 yr old male) and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis. During spring and fall I will add Loratidine 10mg to his arsenal. In the case of this kid (with high titers!!) abx did nothing but make his stomach an even bigger train wreck. We use OLE as our base antimicrobial and focus nearly everything else we do on inflammation. The result is a kid who just graduated from high school on Monday after years of me being told he'd never make it through public school.Â

>

> Hang in there, obey your gut and look further into inflammation.

>

>

> ________________________________

>

> To: mb12valtrex

> Cc: gnomederwear@...

> Sent: Thursday, May 17, 2012 10:06 AM

> Subject: RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

>

>

> Â

> I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 and

> CRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.

> Ratan.

> --------------

>

> Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...

> - Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM

> - Author of "Nutrition & Supplements in Major Mental Illnesses";

> - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;

> - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);

> - www.RegainMentalHealth.com/Â Â www.jaipurmart.com/trade/meditationandhealth

>

>

>

> ________________________________

> To: mb12valtrex

> From: gnomederwear@...

> Date: Thu, 17 May 2012 06:20:13 -0400

> Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

>

> Â

> Something interesting about my son I just noticed that I thought I'd

> put out there. Back in the fall, his OCD/separation anxiety behaviors

> were pretty bad. He's 3.5 and sometimes gets into the bouts of

> separation anxiety with his dad. We ran a CBC in January, and he

> showed some indications of inflammation, so I started him on some

> Advil for a few days. Interestingly, his separation anxiety/OCD with

> his dad subsided.

>

> Last few days...it was really, really bad. His dad couldn't even walk

> out of the same room as him without him throwing a total fit. He'd

> scream this bloodcurdling scream like we were skinning him alive and

> then he'd run after his dad, even when his dad was just 6 feet away in

> the bathroom. My son was pounding at the bathroom door, screaming

> that screeching scream, stomping his feet on the bathroom door. His

> dad had gone out the front door to the car for a minute, still within

> sight of Ethan, the storm door was closed but it's glass and Ethan

> could still see him...and Ethan broke the metal latch right off the

> door -- that's how bad this tantrum/screaming was.

>

> I thought PANDAS both times. I did start him on a bit of inositol

> today but I gave him some Advil this morning. Last time, I didn't

> think of starting him on inositol. We pulled ASO titers and while we

> were waiting for them to come back, I put him on anti-inflammatories

> (just Children's Advil) for a week and the separation anxiety came to

> a grinding halt.

>

> This time, I'm seeing the same thing. Even in the first 24 hours on

> anti-inflammatories, he stopped going apesh*t when his dad left the

> room. Seems a lot happier and although he did go and look for his dad

> after his dad was gone for 5 minutes, he didn't go frantic.

>

> I almost think now it might be inflammation causing this behavior.

> Has anyone else seen this correlate with inflammation? This behavior

> seems to be responding to anti-inflammatories for him. I wonder

> what's causing the inflammation?

>

[Guest guest]

is,

I know this would not occur to you, probably, but I want you to know that

oxalate issues can look like viral issues mainly because it can activate the

immune system (a la macrophages endocytosing oxalate crystals) and this can

start an inflammatory cascade, even sometimes with fever. (see first article

below)

Since oxalate can be involved even with the excretion or fluidity of mucus in

the lungs, causing congestion in some people, it may help to explain why some

children seem to always to have viral infections.

The use of antibiotics also may have killed flora that had been degrading

oxalate before then.

My child seemed to have chronic viral issues growing up, and now as an adult she

has fibromyalgia and chronic fatigue and NOW we have been getting testing of her

oxalate and it is a big issue, so it probably was all through her life when she

was sick about four or five times more often than her classmates. (So far

everyone who has been tested with fibro or CFS has had oxalate issues and many

improve substantially reducing oxalate in the diet.)

Many adult LOD listmates have talked about " dumping " inducing anxiety and/or

depression or talk about how they had suddenly realized these issues were no

longer present after they had been on the diet a long time. That was not why

they were on the diet, and they were surprised at that change. When anxiety is

related to oxalate, often taking magnesium can help.

One lady who isn't autistic even had a flare of autistic behavior at work where

she had to go hide in a conference room until she got over it, and she was

shocked this happened to her. She was doing the diet for something unrelated

like vulvodynia or something.

Dumping involves the sudden release of stored oxalate, and it happens in

unpredictable cycles, and sometimes, if someone had been stashing away a lot of

oxalate on a high oxalate diet (almond milk, and nut muffins, spinach, etc.) the

body may go into a detox mode to deal with it every so often, even if you aren't

doing the diet.

Regardless of whether your child's issues are or are not oxalate related, why

don't you think about ordering a Great Plains organic acid test kit, and the

next time one of these episodes hits, get an organic acid test to capture the

moment. The oxalate markers are on there, and even if it isn't associated with

raised urine oxalate, you will still see how and what his metabolism is reacting

to. Many of the markers called fungal on that test actually have some other

possible explanations, but you may be really surprised what might be the

difference when he is doing well, and when he is having these episodes. If you

could do a " well one " to compare against a " having an episode " one, you might

even learn so much!

One of the things I do for people is make a correction of the urine

concentration because oxalate issues (and other issues) cause creatinine to be

secreted or reabsorbed in the kidney, and that totally wrecks the ability of

labs to use creatinine to determine the water concentration of the sample. I

have a different way of correcting it that really works and I've done this for

now more than 500 of these tests.

When I have a series of these tests from the same person, it really helps to go

back and review what changed in response to therapy, and you moms and dads can

remember what was going on at the time and whether it was a good time or a bad

time when he had a particular OAT. I analyze a lot of these for people in

retrospect...sometimes years in retrospect...but it has to be the test from

Great Plains because I cannot correct the urine concentration on other tests.

Just this week, I compared four tests for a mom whose son is in his late

twenties, and it was a shock to her to see how these OATs compared to each other

after doing the concentration correction, and thinking about how his therapy had

changed in the last 16 years.

Another thing, too, is if you got a bottle of Bayer Multistix 10, you could

measure changes from day to day in pH, and many other things it tests that could

help give clues as to what is going on during bad days. The bottle comes with a

hundred tests, so this is a good thing to split with some local friends.

The big deal is capturing the moment when things are bad, and being ready with

the test kit and strips.

I'm putting below a copy of the abstract for the first peer-reviewed paper on

oxalate in autism showing how frequently oxalate is a problem in autism. To our

great surprise, when we chose the children least likely to have oxalate issues

because of not having " risk factors " , all but one of the children were so high

they didn't even overlap in both or either urine and blood with controls. That

one child just barely overlapped. So, oxalate was an issue in 97% of them and

for the group statistics, they were three times the levels in controls! This

study was done with children in Poland, and that helped us avoid those who were

getting all the sorts of treatment and things you would have found in the US.

No special diets.

It did show that urine and plasma oxalate may not agree. There was a sixteen

fold difference between the ratio of urine to plasma oxalate in the 36 children

in the study, so thee are some children who may look normal in urine but have

raised plasma oxalate. There were 60 controls.

Only Great Plains has the oxalate markers on their organic acid test, but the

presence of oxalate in the urine can RAISE creatinine in percent in urine as

much as five-fold, making it look like oxalate and everything else ratioed to

creatinine are good or low, putting values far below the reference range so they

aren't flagged.

I wish other labs also measured oxalate, but they haven't come on board.

(Autism Oxalate Project)

Am J Kidney Dis. 2001 Aug;38(2):331-8.

Cytokine production induced by binding and processing of calcium oxalate

crystals in cultured macrophages.

de Water R, Leenen PJ, Noordermeer C, Nigg AL, Houtsmuller AB, Kok DJ, Schröder

FH.

Source

Departments of Experimental Urology, Immunology, and Pathology, Faculty of

Medicine, Erasmus University, Rotterdam, The Netherlands. dewater@...

Abstract

Deposition of calcium oxalate (CaOx) crystals in the renal interstitium is

common in humans with primary oxalosis and secondary hyperoxaluria, as well as

in kidneys of rats with CaOx nephrolithiasis. In vivo, macrophages and

multinucleated giant cells mostly encapsulate these crystals. To investigate

whether macrophages are able to dispose of CaOx crystals after phagocytosis, we

used a nontransformed macrophage cell line derived from mouse spleen

progenitors. Cytokine assays showed that in response to crystal binding and

phagocytosis, these macrophages release tumor necrosis factor-alpha. This

release was evident at 8 hours, maximal at 24 hours, and decreased to control

values after 48 hours of incubation with crystals. A very low but significant

release of interleukin-6 into the culture medium was only noticed after 32

hours. Radiochemical experiments showed that these cells bind 38.8% of the CaOx

crystals added. After 4 days, all internalized crystals had been dissolved and

their molecular constituents released into the extracellular environment.

Confocal laser scanning microscopy followed by morphometrical analyses confirmed

these results. Long-term (survival) analyses showed that in the interval under

study and at the crystal doses used, cell viability was not significantly

affected. These findings support the view that properly functioning macrophages

are able to remove CaOx deposits from the renal interstitium and that these

cells produce inflammatory cytokines before crystal dissolution.

PMID:

11479159

Eur J Paediatr Neurol. 2011 Sep 10. [Epub ahead of print]

A potential pathogenic role of oxalate in autism.

Konstantynowicz J, Porowski T, Zoch-Zwierz W, Wasilewska J, Kadziela-Olech H,

Kulak W, Owens SC, Piotrowska-Jastrzebska J, Kaczmarski M.

Source

Department of Pediatrics and Developmental Disorders, Medical University of

Bialystok, Poland.

Abstract

BACKGROUND:

Although autistic spectrum disorders (ASD) are a strongly genetic condition

certain metabolic disturbances may contribute to clinical features. Metabolism

of oxalate in children with ASD has not yet been studied.

AIM:

The objective was to determine oxalate levels in plasma and urine in autistic

children in relation to other urinary parameters.

METHOD:

In this cross-sectional study, plasma oxalate (using enzymatic method with

oxalate oxidase) and spontaneous urinary calcium oxalate (CaOx) crystallization

(based on the Bonn-Risk-Index, BRI) were determined in 36 children and

adolescents with ASD (26 boys, 10 girls) aged 2-18 years and compared with 60

healthy non-autistic children matched by age, gender and anthropometric traits.

RESULTS:

Children with ASD demonstrated 3-fold greater plasma oxalate levels [5.60

(5th-95th percentile: 3.47-7.51)] compared with reference [(1.84 (5th-95th

percentile: 0.50-4.70) & #956;mol/L (p < 0.05)] and 2.5-fold greater urinary

oxalate concentrations (p < 0.05). No differences between the two groups were

found in urinary pH, citraturia, calciuria or adjusted CaOx crystallization

rates based on BRI. Despite significant hyperoxaluria no evidence of kidney

stone disease or lithogenic risk was observed in these individuals.

CONCLUSIONS:

Hyperoxalemia and hyperoxaluria may be involved in the pathogenesis of ASD in

children. Whether this is a result of impaired renal excretion or an extensive

intestinal absorption, or both, or whether Ox may cross the blood brain barrier

and disturb CNS function in the autistic children remains unclear. This appears

to be the first report of plasma and urinary oxalate in childhood autism.

Copyright © 2011 European Paediatric Neurology Society. Published by Elsevier

Ltd. All rights reserved.

PMID:

21911305

[PubMed - as supplied by publisher]

>

> Thank you so much Gayle and Alberta for your posts. Gayle,you gave me so much

hope. This inflammation and pandas/pans has really exhausted me. I have been

struggling with it at least for the last 5 months. I certainly think that there

is overlap between ocd and anxiety caused by gut bacteria and strep and

mycoplasma etc. Alberta, I actually have the same feelings regarding

inflammation and still am confused about the pandas/pans diagnosis. I began

suspecting pandas when I first heard about it. I had to look back and recalled a

lot of episodes where he will have acute onset of anxiety especially separation

anxiety and ocd. Whatever motor stuff he had, we called it stimming. Then the

episodes partially resolve and he would be left with some minimal baseline

anxiety. He had several ear infections as a child. Now I am not so sure if they

were really ear infections or viral illnesses-pediatricians tend to overdiagnose

ear infections and mess up children's gut with antibiotics. That was about three

years ago and then anxiety reduced a lot. But then for two years, my son didn't

really have any respiratory infections. Last year in january, he had

appendicitis with appendectomy and after the antibiotic course was over, he

developed tantrums and ocd. Then in october 2011, we put him on gcmaf and within

a month, he had severe ocd, sensory issues, tantrums but no separation anxiety.

We did few rounds of vancomycin thinking it was clostridia but anxiety kept

coming back. I believe gcmaf was causing inflammation. In february, he had a

viral infection and then we were hit with the worst anxiety ever. He had acute

onset of anxiety, tics, mood swings, frequent urination, started walking on

heels, couldn't hold even a fork to eat. He would sit on bed for several minutes

before falling asleep and even when he did, he would sleep in odd positions. His

strep throat swab was negative and he has no antibodies. Looking back I see that

he always reacted this way in a milder form whenever he had an infection and

this time the reaction was severe as gcmaf caused inflammation as well. The

theory behind using antimicrobials both prescription and naturals is to keep

infection under control so it doesn't trigger more inflammation. But what works

for most kids is antiiinflammatory treatments. This is the tough part for me. My

son has bad phenol sensitivity and most of the natural antiinflammatories are

phenolic. He was a curcumin responder and still responds for the first few days

but then gets severe reactions. He responds to advil but we cannot use it often

as he has bad acid reflux. Now I have him on pepcid which is allowing me to use

advil once a day. This is not the right dose but so far this is what he can

tolerate. I am exploring some other options to reduce inflammation and will

report once get more info on them. Neuroprotek was recommended but can't recall

why we didn't use it, probably because of one of the ingredients. Will look into

it again. Inositol seems promising and really want to try it. Sorry I went into

this much detail about my kid. Just felt like sharing what we have been thru in

the last few months and why we concluded that there is element of pans.

>

> is

>

[Guest guest]

Gayle - thanks so much for this. Homeopathy was not the answer for you , right? Seems more like it was natural antivirals antifungals, and neuroprotek? We had been doing neuroprotek, but just stopped. We are going to try mms. But I've long been curious about homeopathy and I know many have really good luck with that. My son has been doing ab's for 10 months now with minimal improvement. Seems the more we look for (infections) the more we find. We are also doing herbals and many things to support his body. Anyway, I appreciate your sharing, RuthSent from my iPhone

Ruth, We saw Dr. T, Payne and just to name a few. On labs he was not particularly sensitive to any one virus but as in the population of older kids, viruses fly around faster than bacterial infections. Every little bug that would go through the school would have a trickle down effect on him with small scale spikes in his anxiety, ocd and separation issues. Three times in his life he actually got the virus and well it all went irrevocably south within days after. None of his docs ever openly considered IVIG or discussed it with me. He's a very good responder once you figure out what he needs and I believe that has morphed slightly as he's aged. Antibiotics were a true nightmare for us..he took so many back to back courses for so long including the

Saving Sammy dose of augmentin. He still cannot gain weight, he's nothing but muscle and bone, no adipose tissue at all. Bonus, when he takes all 4 of his OLE each day his skins clears right up too. Here's the short list of trials without going back and getting out my journals...which puts a knot in my throat.Homeopathy (twice)TCMTruehopeRx Antivirals (colossally awful)Rx Antifungals (this was like a silver bullet during the middle school exacerbation)Rx SSRI (no change)Rx Antibiotics (Pen VK, Azith, Augmentin, Biaxin)Prilosec (I think now this actually made his reflux worse, that he might have been lacking acid, not having too much of

it)Throughout all of this we were utilizing elements of the DAN! protocol. In fact things like epsom salt baths, CLO, probiotics, organic meats, cleaner-than-most-kids diet have been in our world since he was diagnosed in 2007.He weighs 130lbs and takes the following everyday:OLE 750 mg X 4NeuroProtek X 6D3 2000 iu (4000 iu in winter)FolaPro X 1Methyl B12 X 1Super B-zyme X 1Vit C 250mg X 2 (depending on immune state..more during any immune challenge)Lugols 2% X 3 dropsCoQ10 200mg X 1B2 100mg X 1Holy Basil 400mg X 1Loratidine 10mg X 1 (spring and fall)I told him I can't make the list of supps any smaller at this point in time. Maybe later as he matures but this is as short of a list as we

can go currently. He groans about it sometimes but he remembers the hell he went through and always takes his supps once he's expressed a moment of teen angst about it. To: "mb12valtrex " <mb12valtrex > Sent: Friday, May 18, 2012 7:31 PM Subject: Re: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle - Thanks so much for your story. It sounds way too much like ours. I was wondering... you said your son was a viral kid. WHich viruses did he have? Also, other than the diet changes, what treatment did you use? I'm assuming antibiotics. But, did you also do IVIG? Anything else?RuthSent from my iPad

is,In our case, I could simply limit his consumption of foods that made it to any of the high histamine lists that I had at the time. For example, that kid will eat his body weight in strawberries. I'd tell him to put a big handful in a dessert cup instead of taking the giant serving bowl full to his room...where their consumption was assured. If we had saur kraut at dinner (which he loves) the strawberries would miraculously disappear to the garage refrigerator until the next day. A friend of mine at that time had a dog with a mast cell tumor (histamine driven). Her vet told her that the dog could have any meat as long as it was cooked and immediately served but letting it sit (even refrigerated) would skyrocket the histamine content. I

was never able to confirm or deny

this through internet search but my son was so unspeakably sick at that time that I just adopted the practice ending leftovers forever around here. We (my adult daughter who is a nurse) and I did see a change in him with these small diet changes. Put that together with NeuroProtek and now occasional advil and we're living life again.Of note also is that my son has had three massive exacerbations (age 8, 11, 15). All three started like clockwork 5 days after what was thought to be a stomach virus. He was 11 before I found PANDAS online and insisted strep titers be drawn though the kid had NEVER been diagnosed with strep in his entire life (should have been a clue right there). His ASO and AntiDNAse were off the charts earning him the PANDAS diagnosis but this is a viral kid if ever there was one. When it happened again at 15 we saw Dr. Trifiletti who tested for mycoplasma as well as strep and sure enough he

was positive for that too (and in a big way) with no symptoms whatsoever. Just my opinion but as parents in looking at the symptoms your kid is exhibiting, if it looks like a duck, walks like a duck and quacks like a duck, it's probably a duck. Absence of what the medical establishment CURRENTLY considers confirmatory labwork doesn't mean your kid isn't suffering from the same thing my kid suffered unspeakably with. In five years they'll have a whole new set of diagnostic criteria...none of us can wait around for the nod from the docs that, indeed, it turns out our kids really are sick, it's PANS and here's the treatment. We have to plow forward, fill our monstrous sized dry erase boards with our homemade flow charts of treatment options. That's what I did...several huge boards at one time. We have been blessed with some of the best docs in the business but there was no silver bullet for my son, it was done is steps and stages. There is so little that

we haven't tried...many thousands of dollars. I used to be secretly jealous of those families that had nearly overnight success with a course of zith. Our success was built in stages. Cleaning up the diet, as much rest as possible, keeping stress to a minimum whenever possible, rescue supps/meds for periods of crisis, supportive supps, OLE and anti-inflammatories...and above everything else a faith that God's hand is on your child and on you.Gayle To: mb12valtrex Sent:

Thursday, May 17, 2012 10:41 PM Subject: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle,

Can you share some details on Low histamine diet? I looked it up and found several lists but not sure which one is accurate. Out of the list that I found, the only bad food that my son eats is the egg which we finally put back in his diet as there weren't many protein options available for him and he was really having hypoglycemia at school on gfcf breakfast. I would really appreciate your help.

Thanks

is

>

> My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate "advil responder". Separation anxiety is probably his single biggest life-limiting symptom of PANDAS and advil definitely helps. Givien that fact, which was determined years ago, we lean toward a low histamine diet (I say lean to because he's 18 and when he's feeling good he eats like any 18 yr old male) and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis. During spring and fall I will add Loratidine 10mg to his arsenal. In the case of this kid (with high titers!!) abx did nothing but make his stomach an even bigger train wreck. We use OLE as our base antimicrobial and focus nearly everything else we do on inflammation. The result is a kid who just graduated from high school on Monday after years of me being told he'd never make it through public school.Â

>

> Hang in there, obey your gut and look further into inflammation.

>

>

> ________________________________

>

> To: mb12valtrex

> Cc: gnomederwear@...

> Sent: Thursday, May 17, 2012 10:06 AM

> Subject: RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

>

>

> Â

> I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 and

> CRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.

> Ratan.

> --------------

>

> Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...

> - Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM

> - Author of "Nutrition & Supplements in Major Mental Illnesses";

> - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;

> - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);

> - www.RegainMentalHealth.com/Â Â www.jaipurmart.com/trade/meditationandhealth

>

>

>

> ________________________________

> To: mb12valtrex

> From: gnomederwear@...

> Date: Thu, 17 May 2012 06:20:13 -0400

> Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

>

> Â

> Something interesting about my son I just noticed that I thought I'd

> put out there. Back in the fall, his OCD/separation anxiety behaviors

> were pretty bad. He's 3.5 and sometimes gets into the bouts of

> separation anxiety with his dad. We ran a CBC in January, and he

> showed some indications of inflammation, so I started him on some

> Advil for a few days. Interestingly, his separation anxiety/OCD with

> his dad subsided.

>

> Last few days...it was really, really bad. His dad couldn't even walk

> out of the same room as him without him throwing a total fit. He'd

> scream this bloodcurdling scream like we were skinning him alive and

> then he'd run after his dad, even when his dad was just 6 feet away in

> the bathroom. My son was pounding at the bathroom door, screaming

> that screeching scream, stomping his feet on the bathroom door. His

> dad had gone out the front door to the car for a minute, still within

> sight of Ethan, the storm door was closed but it's glass and Ethan

> could still see him...and Ethan broke the metal latch right off the

> door -- that's how bad this tantrum/screaming was.

>

> I thought PANDAS both times. I did start him on a bit of inositol

> today but I gave him some Advil this morning. Last time, I didn't

> think of starting him on inositol. We pulled ASO titers and while we

> were waiting for them to come back, I put him on anti-inflammatories

> (just Children's Advil) for a week and the separation anxiety came to

> a grinding halt.

>

> This time, I'm seeing the same thing. Even in the first 24 hours on

> anti-inflammatories, he stopped going apesh*t when his dad left the

> room. Seems a lot happier and although he did go and look for his dad

> after his dad was gone for 5 minutes, he didn't go frantic.

>

> I almost think now it might be inflammation causing this behavior.

> Has anyone else seen this correlate with inflammation? This behavior

> seems to be responding to anti-inflammatories for him. I wonder

> what's causing the inflammation?

>

[Guest guest]

Homeopathy didn't bring about any improvement for us BUT that was before Pierre and came into the picture. We used Payne and tho I know several who've had big success with him, we didn't benefit. That said, I still toy often with putting down the cash for an appt with as I believe their in depth interview process of the patient is the key to their success. To: "mb12valtrex "

<mb12valtrex > Sent: Saturday, May 19, 2012 6:33 AM Subject: Re: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle - thanks so much for this. Homeopathy was not the answer for you , right? Seems more like it was natural antivirals antifungals, and neuroprotek? We had been doing neuroprotek, but just stopped. We are going to try mms. But I've long been curious about homeopathy and I know many have really good luck with that. My son has been doing ab's for 10 months now with minimal improvement. Seems the more we look for (infections) the more we find. We are also doing herbals and many things to support his body. Anyway, I appreciate your sharing, RuthSent from my iPhone

Ruth, We saw Dr. T, Payne and just to name a few. On labs he was not particularly sensitive to any one virus but as in the population of older kids, viruses fly around faster than bacterial infections. Every little bug that would go through the school would have a trickle down effect on him with small scale spikes in his anxiety, ocd and separation issues. Three times in his life he actually got the virus and well it all went irrevocably south within days after. None of his docs ever openly considered IVIG or discussed it with me. He's a very good responder once you figure out what he needs and I believe that has morphed slightly as he's aged. Antibiotics were a true nightmare for us..he took so many back to back

courses for so long including the

Saving Sammy dose of augmentin. He still cannot gain weight, he's nothing but muscle and bone, no adipose tissue at all. Bonus, when he takes all 4 of his OLE each day his skins clears right up too. Here's the short list of trials without going back and getting out my journals...which puts a knot in my throat.Homeopathy (twice)TCMTruehopeRx Antivirals (colossally awful)Rx Antifungals (this was like a silver bullet during the middle school exacerbation)Rx SSRI (no change)Rx Antibiotics (Pen VK, Azith, Augmentin, Biaxin)Prilosec (I think now this actually made his reflux worse, that he might have been lacking acid, not having too much of

it)Throughout all of this we were utilizing elements of the DAN! protocol. In fact things like epsom salt baths, CLO, probiotics, organic meats, cleaner-than-most-kids diet have been in our world since he was diagnosed in 2007.He weighs 130lbs and takes the following everyday:OLE 750 mg X 4NeuroProtek X 6D3 2000 iu (4000 iu in winter)FolaPro X 1Methyl B12 X 1Super B-zyme X 1Vit C 250mg X 2 (depending on immune state..more during any immune challenge)Lugols 2% X 3 dropsCoQ10 200mg X 1B2 100mg X 1Holy Basil 400mg X 1Loratidine 10mg X 1 (spring and fall)I told him I can't make the list of supps any smaller at this point in time. Maybe later as he matures but this is as short of a list as we

can go currently. He groans about it sometimes but he remembers the hell he went through and always takes his supps once he's expressed a moment of teen angst about it. To: "mb12valtrex " <mb12valtrex > Sent: Friday, May 18, 2012 7:31 PM Subject: Re: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle - Thanks so much for your story. It sounds way too much like ours. I was wondering... you said your son was a viral kid. WHich viruses did he have? Also, other than the diet changes, what treatment did you use? I'm assuming antibiotics. But, did you also do IVIG? Anything else?RuthSent from my iPad

is,In our case, I could simply limit his consumption of foods that made it to any of the high histamine lists that I had at the time. For example, that kid will eat his body weight in strawberries. I'd tell him to put a big handful in a dessert cup instead of taking the giant serving bowl full to his room...where their consumption was assured. If we had saur kraut at dinner (which he loves) the strawberries would miraculously disappear to the garage refrigerator until the next day. A friend of mine at that time had a dog with a mast cell tumor (histamine driven). Her vet told her that the dog could have any meat as long as it was cooked and immediately served but letting it sit (even refrigerated) would skyrocket the histamine content. I

was never able to confirm or deny

this through internet search but my son was so unspeakably sick at that time that I just adopted the practice ending leftovers forever around here. We (my adult daughter who is a nurse) and I did see a change in him with these small diet changes. Put that together with NeuroProtek and now occasional advil and we're living life again.Of note also is that my son has had three massive exacerbations (age 8, 11, 15). All three started like clockwork 5 days after what was thought to be a stomach virus. He was 11 before I found PANDAS online and insisted strep titers be drawn though the kid had NEVER been diagnosed with strep in his entire life (should have been a clue right there). His ASO and AntiDNAse were off the charts earning him the PANDAS diagnosis but this is a viral kid if ever there was one. When it happened again at 15 we saw Dr. Trifiletti who tested for mycoplasma as well as strep and sure enough he

was positive for that too (and in a big way) with no symptoms whatsoever. Just my opinion but as parents in looking at the symptoms your kid is exhibiting, if it looks like a duck, walks like a duck and quacks like a duck, it's probably a duck. Absence of what the medical establishment CURRENTLY considers confirmatory labwork doesn't mean your kid isn't suffering from the same thing my kid suffered unspeakably with. In five years they'll have a whole new set of diagnostic criteria...none of us can wait around for the nod from the docs that, indeed, it turns out our kids really are sick, it's PANS and here's the treatment. We have to plow forward, fill our monstrous sized dry erase boards with our homemade flow charts of treatment options. That's what I did...several huge boards at one time. We have been blessed with some of the best docs in the business but there was no silver bullet for my son, it was done is steps and stages. There is so little that

we haven't tried...many thousands of dollars. I used to be secretly jealous of those families that had nearly overnight success with a course of zith. Our success was built in stages. Cleaning up the diet, as much rest as possible, keeping stress to a minimum whenever possible, rescue supps/meds for periods of crisis, supportive supps, OLE and anti-inflammatories...and above everything else a faith that God's hand is on your child and on you.Gayle To: mb12valtrex Sent:

Thursday, May 17, 2012 10:41 PM Subject: Re: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

Gayle,

Can you share some details on Low histamine diet? I looked it up and found several lists but not sure which one is accurate. Out of the list that I found, the only bad food that my son eats is the egg which we finally put back in his diet as there weren't many protein options available for him and he was really having hypoglycemia at school on gfcf breakfast. I would really appreciate your help.

Thanks

is

>

> My son is now 18, confirmed PANDAS/PANS and not autistic. He's the consummate "advil responder". Separation anxiety is probably his single biggest life-limiting symptom of PANDAS and advil definitely helps. Givien that fact, which was determined years ago, we lean toward a low histamine diet (I say lean to because he's 18 and when he's feeling good he eats like any 18 yr old male) and he takes NeuroProtek (algonot.com) to combat inflammation on a daily basis. During spring and fall I will add Loratidine 10mg to his arsenal. In the case of this kid (with high titers!!) abx did nothing but make his stomach an even bigger train wreck. We use OLE as our base antimicrobial and focus nearly everything else we do on inflammation. The result is a kid who just graduated from high school on Monday after years of me being told he'd never make it through public school.Â

>

> Hang in there, obey your gut and look further into inflammation.

>

>

> ________________________________

>

> To: mb12valtrex

> Cc: gnomederwear@...

> Sent: Thursday, May 17, 2012 10:06 AM

> Subject: RE: Anti-inflammatories helping with OCD/separation anxiety symptoms--and homocysteine

>

>

> Â

> I will like to see his level of serum homocysteine. It is a good indicator of inflammation anywhere. Also C-Reactive Proteine. The Hcy should stay below 9 and

> CRP should be 3 or below. Higher values indicate inflammation possibly in brain. Inflammation can be caused by infection or exotoxins or endotoxins.

> Ratan.

> --------------

>

> Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...

> - Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM

> - Author of "Nutrition & Supplements in Major Mental Illnesses";

> - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;

> - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);

> - www.RegainMentalHealth.com/Â Â www.jaipurmart.com/trade/meditationandhealth

>

>

>

> ________________________________

> To: mb12valtrex

> From: gnomederwear@...

> Date: Thu, 17 May 2012 06:20:13 -0400

> Subject: Anti-inflammatories helping with OCD/separation anxiety symptoms

>

> Â

> Something interesting about my son I just noticed that I thought I'd

> put out there. Back in the fall, his OCD/separation anxiety behaviors

> were pretty bad. He's 3.5 and sometimes gets into the bouts of

> separation anxiety with his dad. We ran a CBC in January, and he

> showed some indications of inflammation, so I started him on some

> Advil for a few days. Interestingly, his separation anxiety/OCD with

> his dad subsided.

>

> Last few days...it was really, really bad. His dad couldn't even walk

> out of the same room as him without him throwing a total fit. He'd

> scream this bloodcurdling scream like we were skinning him alive and

> then he'd run after his dad, even when his dad was just 6 feet away in

> the bathroom. My son was pounding at the bathroom door, screaming

> that screeching scream, stomping his feet on the bathroom door. His

> dad had gone out the front door to the car for a minute, still within

> sight of Ethan, the storm door was closed but it's glass and Ethan

> could still see him...and Ethan broke the metal latch right off the

> door -- that's how bad this tantrum/screaming was.

>

> I thought PANDAS both times. I did start him on a bit of inositol

> today but I gave him some Advil this morning. Last time, I didn't

> think of starting him on inositol. We pulled ASO titers and while we

> were waiting for them to come back, I put him on anti-inflammatories

> (just Children's Advil) for a week and the separation anxiety came to

> a grinding halt.

>

> This time, I'm seeing the same thing. Even in the first 24 hours on

> anti-inflammatories, he stopped going apesh*t when his dad left the

> room. Seems a lot happier and although he did go and look for his dad

> after his dad was gone for 5 minutes, he didn't go frantic.

>

> I almost think now it might be inflammation causing this behavior.

> Has anyone else seen this correlate with inflammation? This behavior

> seems to be responding to anti-inflammatories for him. I wonder

> what's causing the inflammation?

>

[Guest guest]

,What can urine pH tell you about oxalate status?Thanks,Sent from my iPhone

is,

I know this would not occur to you, probably, but I want you to know that oxalate issues can look like viral issues mainly because it can activate the immune system (a la macrophages endocytosing oxalate crystals) and this can start an inflammatory cascade, even sometimes with fever. (see first article below)

Since oxalate can be involved even with the excretion or fluidity of mucus in the lungs, causing congestion in some people, it may help to explain why some children seem to always to have viral infections.

The use of antibiotics also may have killed flora that had been degrading oxalate before then.

My child seemed to have chronic viral issues growing up, and now as an adult she has fibromyalgia and chronic fatigue and NOW we have been getting testing of her oxalate and it is a big issue, so it probably was all through her life when she was sick about four or five times more often than her classmates. (So far everyone who has been tested with fibro or CFS has had oxalate issues and many improve substantially reducing oxalate in the diet.)

Many adult LOD listmates have talked about "dumping" inducing anxiety and/or depression or talk about how they had suddenly realized these issues were no longer present after they had been on the diet a long time. That was not why they were on the diet, and they were surprised at that change. When anxiety is related to oxalate, often taking magnesium can help.

One lady who isn't autistic even had a flare of autistic behavior at work where she had to go hide in a conference room until she got over it, and she was shocked this happened to her. She was doing the diet for something unrelated like vulvodynia or something.

Dumping involves the sudden release of stored oxalate, and it happens in unpredictable cycles, and sometimes, if someone had been stashing away a lot of oxalate on a high oxalate diet (almond milk, and nut muffins, spinach, etc.) the body may go into a detox mode to deal with it every so often, even if you aren't doing the diet.

Regardless of whether your child's issues are or are not oxalate related, why don't you think about ordering a Great Plains organic acid test kit, and the next time one of these episodes hits, get an organic acid test to capture the moment. The oxalate markers are on there, and even if it isn't associated with raised urine oxalate, you will still see how and what his metabolism is reacting to. Many of the markers called fungal on that test actually have some other possible explanations, but you may be really surprised what might be the difference when he is doing well, and when he is having these episodes. If you could do a "well one" to compare against a "having an episode" one, you might even learn so much!

One of the things I do for people is make a correction of the urine concentration because oxalate issues (and other issues) cause creatinine to be secreted or reabsorbed in the kidney, and that totally wrecks the ability of labs to use creatinine to determine the water concentration of the sample. I have a different way of correcting it that really works and I've done this for now more than 500 of these tests.

When I have a series of these tests from the same person, it really helps to go back and review what changed in response to therapy, and you moms and dads can remember what was going on at the time and whether it was a good time or a bad time when he had a particular OAT. I analyze a lot of these for people in retrospect...sometimes years in retrospect...but it has to be the test from Great Plains because I cannot correct the urine concentration on other tests. Just this week, I compared four tests for a mom whose son is in his late twenties, and it was a shock to her to see how these OATs compared to each other after doing the concentration correction, and thinking about how his therapy had changed in the last 16 years.

Another thing, too, is if you got a bottle of Bayer Multistix 10, you could measure changes from day to day in pH, and many other things it tests that could help give clues as to what is going on during bad days. The bottle comes with a hundred tests, so this is a good thing to split with some local friends.

The big deal is capturing the moment when things are bad, and being ready with the test kit and strips.

I'm putting below a copy of the abstract for the first peer-reviewed paper on oxalate in autism showing how frequently oxalate is a problem in autism. To our great surprise, when we chose the children least likely to have oxalate issues because of not having "risk factors", all but one of the children were so high they didn't even overlap in both or either urine and blood with controls. That one child just barely overlapped. So, oxalate was an issue in 97% of them and for the group statistics, they were three times the levels in controls! This study was done with children in Poland, and that helped us avoid those who were getting all the sorts of treatment and things you would have found in the US. No special diets.

It did show that urine and plasma oxalate may not agree. There was a sixteen fold difference between the ratio of urine to plasma oxalate in the 36 children in the study, so thee are some children who may look normal in urine but have raised plasma oxalate. There were 60 controls.

Only Great Plains has the oxalate markers on their organic acid test, but the presence of oxalate in the urine can RAISE creatinine in percent in urine as much as five-fold, making it look like oxalate and everything else ratioed to creatinine are good or low, putting values far below the reference range so they aren't flagged.

I wish other labs also measured oxalate, but they haven't come on board.

(Autism Oxalate Project)

Am J Kidney Dis. 2001 Aug;38(2):331-8.

Cytokine production induced by binding and processing of calcium oxalate crystals in cultured macrophages.

de Water R, Leenen PJ, Noordermeer C, Nigg AL, Houtsmuller AB, Kok DJ, Schröder FH.

Source

Departments of Experimental Urology, Immunology, and Pathology, Faculty of Medicine, Erasmus University, Rotterdam, The Netherlands. dewater@...

Abstract

Deposition of calcium oxalate (CaOx) crystals in the renal interstitium is common in humans with primary oxalosis and secondary hyperoxaluria, as well as in kidneys of rats with CaOx nephrolithiasis. In vivo, macrophages and multinucleated giant cells mostly encapsulate these crystals. To investigate whether macrophages are able to dispose of CaOx crystals after phagocytosis, we used a nontransformed macrophage cell line derived from mouse spleen progenitors. Cytokine assays showed that in response to crystal binding and phagocytosis, these macrophages release tumor necrosis factor-alpha. This release was evident at 8 hours, maximal at 24 hours, and decreased to control values after 48 hours of incubation with crystals. A very low but significant release of interleukin-6 into the culture medium was only noticed after 32 hours. Radiochemical experiments showed that these cells bind 38.8% of the CaOx crystals added. After 4 days, all internalized crystals

had been dissolved and their molecular constituents released into the extracellular environment. Confocal laser scanning microscopy followed by morphometrical analyses confirmed these results. Long-term (survival) analyses showed that in the interval under study and at the crystal doses used, cell viability was not significantly affected. These findings support the view that properly functioning macrophages are able to remove CaOx deposits from the renal interstitium and that these cells produce inflammatory cytokines before crystal dissolution.

PMID:

11479159

Eur J Paediatr Neurol. 2011 Sep 10. [Epub ahead of print]

A potential pathogenic role of oxalate in autism.

Konstantynowicz J, Porowski T, Zoch-Zwierz W, Wasilewska J, Kadziela-Olech H, Kulak W, Owens SC, Piotrowska-Jastrzebska J, Kaczmarski M.

Source

Department of Pediatrics and Developmental Disorders, Medical University of Bialystok, Poland.

Abstract

BACKGROUND:

Although autistic spectrum disorders (ASD) are a strongly genetic condition certain metabolic disturbances may contribute to clinical features. Metabolism of oxalate in children with ASD has not yet been studied.

AIM:

The objective was to determine oxalate levels in plasma and urine in autistic children in relation to other urinary parameters.

METHOD:

In this cross-sectional study, plasma oxalate (using enzymatic method with oxalate oxidase) and spontaneous urinary calcium oxalate (CaOx) crystallization (based on the Bonn-Risk-Index, BRI) were determined in 36 children and adolescents with ASD (26 boys, 10 girls) aged 2-18 years and compared with 60 healthy non-autistic children matched by age, gender and anthropometric traits.

RESULTS:

Children with ASD demonstrated 3-fold greater plasma oxalate levels [5.60 (5th-95th percentile: 3.47-7.51)] compared with reference [(1.84 (5th-95th percentile: 0.50-4.70) & #956;mol/L (p < 0.05)] and 2.5-fold greater urinary oxalate concentrations (p < 0.05). No differences between the two groups were found in urinary pH, citraturia, calciuria or adjusted CaOx crystallization rates based on BRI. Despite significant hyperoxaluria no evidence of kidney stone disease or lithogenic risk was observed in these individuals.

CONCLUSIONS:

Hyperoxalemia and hyperoxaluria may be involved in the pathogenesis of ASD in children. Whether this is a result of impaired renal excretion or an extensive intestinal absorption, or both, or whether Ox may cross the blood brain barrier and disturb CNS function in the autistic children remains unclear. This appears to be the first report of plasma and urinary oxalate in childhood autism.

Copyright © 2011 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.

PMID:

21911305

[PubMed - as supplied by publisher]

>

> Thank you so much Gayle and Alberta for your posts. Gayle,you gave me so much hope. This inflammation and pandas/pans has really exhausted me. I have been struggling with it at least for the last 5 months. I certainly think that there is overlap between ocd and anxiety caused by gut bacteria and strep and mycoplasma etc. Alberta, I actually have the same feelings regarding inflammation and still am confused about the pandas/pans diagnosis. I began suspecting pandas when I first heard about it. I had to look back and recalled a lot of episodes where he will have acute onset of anxiety especially separation anxiety and ocd. Whatever motor stuff he had, we called it stimming. Then the episodes partially resolve and he would be left with some minimal baseline anxiety. He had several ear infections as a child. Now I am not so sure if they were really ear infections or viral illnesses-pediatricians tend to overdiagnose ear infections and mess up

children's gut with antibiotics. That was about three years ago and then anxiety reduced a lot. But then for two years, my son didn't really have any respiratory infections. Last year in january, he had appendicitis with appendectomy and after the antibiotic course was over, he developed tantrums and ocd. Then in october 2011, we put him on gcmaf and within a month, he had severe ocd, sensory issues, tantrums but no separation anxiety. We did few rounds of vancomycin thinking it was clostridia but anxiety kept coming back. I believe gcmaf was causing inflammation. In february, he had a viral infection and then we were hit with the worst anxiety ever. He had acute onset of anxiety, tics, mood swings, frequent urination, started walking on heels, couldn't hold even a fork to eat. He would sit on bed for several minutes before falling asleep and even when he did, he would sleep in odd positions. His strep throat swab was negative and he has no antibodies.

Looking back I see that he always reacted this way in a milder form whenever he had an infection and this time the reaction was severe as gcmaf caused inflammation as well. The theory behind using antimicrobials both prescription and naturals is to keep infection under control so it doesn't trigger more inflammation. But what works for most kids is antiiinflammatory treatments. This is the tough part for me. My son has bad phenol sensitivity and most of the natural antiinflammatories are phenolic. He was a curcumin responder and still responds for the first few days but then gets severe reactions. He responds to advil but we cannot use it often as he has bad acid reflux. Now I have him on pepcid which is allowing me to use advil once a day. This is not the right dose but so far this is what he can tolerate. I am exploring some other options to reduce inflammation and will report once get more info on them. Neuroprotek was recommended but can't recall

why we didn't use it, probably because of one of the ingredients. Will look into it again. Inositol seems promising and really want to try it. Sorry I went into this much detail about my kid. Just felt like sharing what we have been thru in the last few months and why we concluded that there is element of pans.

>

> is

>

[Guest guest]

Thanks for taking the time to remind me about the oxalate issue. I have

considered it in the past but still not completely clear about the concept. My

confusion is that what comes first? When we study inflammatory bowel disease, we

believe that the gut is inflammed and then the oxalates enter the circulation

and form stones in the renal system. An intact intestinal epithelium does not

allow absorption of oxalates at that level. Then the question arises that what

causes inflammation? According to mainstream medicine, inflammatory bowel

diseases are autoimmune illnesses. So my question is that do you believe that

oxalate triggers the inflammation and then the cycle continues? From reading the

different links you have suggested, my understanding is that children on the

spectrum have gut dysbiosis from use of antibiotics which leads to absence of

healthy bacteria that take care of oxalates so there is excess of oxalates in

their gut. My son does have gut dysbiosis which could be leading to oxalate

excess. I wanted to ask you why the dans are against the low oxalate diet?

Please don't feel like I don't believe in this theory. But since you are

involved in this research, I am sure you have faced criticism from the docs and

even the naturopaths(ours didn't) and it would be very beneficial to everyone on

this forum to understand why dans are not enthusiastic about it. I don't

consider myself a dan yet(attending just one conference doesn't make me one) and

I am open to trying whatever works. My problem with different diets is that

practically there is nothing much left for my poor son to eat. He definitely has

phenol sensitivity so most of the fruits are gone including apple, oranges,

grapes. Among the fruits that he eats only pear and mango are left. If I follow

low oxalate diet, it would mean that I have to stop/reduce pears also. He is on

GFCFSF diet and cannot tolerate most of the GF stuff available in stores. My son

was on a very strict diet in 2010 and had absolutely no gains from it. It was

not low oxalate diet so I am still open to it but after all the disappointments

from the different diets I have tried, I am skeptical. I personally saw more

gains when we treated inflammation with antiinflammatories both naturals and

medications. In your opinion, how long does someone need to try low oxalate diet

and how soon do you see the gains? I am waiting for the OAT result from GPL and

would love to get it evaluated by you. Again I thank you for your time and I

hope my confusion about the low oxalate diet doesn't sound like I am being

unreasonable(extremely exhausted today from trying to help a newbie).

is

[Guest guest]

Not true that DANs don't support LOD.  Our DAN encouraged us to keep at it because it did make such a huge difference with Maia.  

.