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Re: Could it be PANDAS? Brain Inflammation?

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" Take Two Aspirins Daily - For some people, aspirin works wonders for their herpes outbreaks. Simply take two aspirin daily. "

            per the article i googled online, it also helps kill parasites. So, if this is a herpes like  virus that causes the brain erosion, such as Dr. Goldberg's new book says, then that is why the aspirin does " wonders " .

 

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, check with from Stop calling it Autism. I think he recovered his child with a high dose of ibouprofenSent: Friday, March 11, 2011 6:49 PMTo: mb12 valtrex Subject: Could it be PANDAS? Brain Inflammation? Without going into huge history, I will explain that my son was diagnosed with regressive autism when he was 2 years old. He lost all language, eye contact, functional play skills over a period of about 6 months. Very devastating. He did not utter another word until he was nearly 3, after a high spike of a 105.2 fever….and that following week he made tremendous gains including letter recognition and labeling of all sorts of items that I had no clue he was retaining….it was as if a latent virus had burned off in his brain through the high fever, and he was able to make breakthroughs never attempted before. My son is now 6, completely verbal, tho not quite fully conversational. We have done biomed for 4 years to include the DAN protocol, diet, oral chelation and most recently YASKO, along with intense SLP, OT, behavioral therapy, recreational therapy, and music therapy. He is in mainstream kindergarten with a full time paraprofessional. Over the years, we have notably recognized that along with high fevers, come gains – some stick, some do not. We have always suspected some sort of viral/brain inflammation connection with my son’s symptoms, but have never been able to find a doctor who could give us substantial answers as to why…or how to treat it or utilize a treatment that would key into this occurrence of fevers/sickness and gains. I have questioned PANDAS before to my DAN, he ran some viral titers and they all came back negative – tho I do not believe my DAN had any idea of what PANDAS was or how to diagnose it, and my knowledge was limited too, so he poo pooed it and we moved on – looking for answers in other ways. Long story short – my son is just recovering from a 7 day stretch of high fevers which concluded in pink eye, double ear infection and a bad cough/cold. I have never seen him this sick for so long. While sick I treated him around the clock with Ibuprofen to keep his fever at bay and ended up with a round of Omnicef to treat the bacterial infection manifested in his ears/eyes, (gooping with green discharge, so I knew I had to treat with RX)….. Tho off the Ibuprofin now, he is still finishing up his round of RX….7 days to go actually. This week we have noticed a tremendous leap in cognition and connections and language, as have his behavioral therapists and today – I got a note from his speech therapist at school, saying that his session was the most productive she’s ever seen with him – that he got most of the responses at 100% with no verbal prompting and initiated conversations with his peers in ways she has never seen before. Looking at our perspective, along with 2 others outside of the family home, I am finding a correlation of something….what I do not know. Is it the ibuprofen – reducing brain inflammation….. is it the RX in his body that is making him sharper, etc? When we Google PANDAS, his major symptoms are consistent with the following: Need for routine/control of environment (OCD)Huge separation anxiety/generalized anticipatory anxietyTrouble sleeping/settling down to sleepBed wettingEye tics (developed just recently with in last 3 months)Feeling as if on roller coaster (ups and downs wax and wane)Sudden onset trouble with transitions (when never a problem before)Inattention/inability to stay focused Occasional hyperactivity/stimming/scripting I feel this is a big indication of his missing puzzle piece, but do not know how to move forward or what to do with this information. Can anyone help? Work like it is all up to you...but pray like it is all up to God...1 in 91 Children...1 in 58 Boys...1 Child Every 20 Minutes... Is Diagnosed With Autism.

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When your DAN ran viral titers, did he run all the NIDS workup? Also, PANDAS is strep, not viral, so did he run the ASO antibodies (I think that is what they are called?)Remember a lot of PANDAS' symptoms *are* ASD ones. I think a lot of the PANDAS kids are NT except for when affected by a strept flare-up. That doesn't sound like your description. I am not an expert on any of this. So that's just my opinion, what little it's worth.

My son is 4.5, has febrile seizures and ADHD like behavior, also some ASD behaviors from time to time. He could probably be considered Asperger's except he's got a mild speech delay. My 6 yr old daughter is dx'd with Asperger's among other things.

I used to think PANDAS because of my daughter had a recurring tic and my son has had some OCD flares. But now I am pretty convinced that my son (and probably my daughter) are viral kids.We are using homeopathy, alternative medications (Respen-A and LDN), diet, vits, minerals, herbs and other supps, witchcraft (I AM KIDDING !!!) lol for my son. Well, we are actually trying to use 'the power of positive thinking' ;-) and doing various therapies. I am worn out!

My daughter is on the same kinds of stuff. We may visit Valtrex over the summer but my husband wanted to try classical homeopathy on my son (for his seizures) first.

 

Without going into huge history, I will explain that my son was diagnosed with regressive autism when he was 2 years old.  He lost all language, eye contact, functional play skills over a period of about 6 months.  Very devastating.  He did not utter another word until he was nearly 3, after a high spike of a 105.2 fever….and that following week he made tremendous gains including letter recognition and labeling of all sorts of items that I had no clue he was retaining….it was as if a latent virus had burned off in his brain through the high fever, and he was able to make breakthroughs never attempted before. 

 My son is now 6, completely verbal, tho not quite fully conversational.  We have done biomed for 4 years to include the DAN protocol, diet, oral chelation and most recently YASKO, along with intense SLP, OT, behavioral therapy, recreational therapy, and music therapy.  He is in mainstream kindergarten with a full time paraprofessional.  Over the years, we have notably recognized that along with high fevers, come gains – some stick, some do not.  We have always suspected some sort of viral/brain inflammation connection with my son’s symptoms, but have never been able to find a doctor who could give us substantial answers as to why…or how to treat it or utilize a treatment that would key into this occurrence of fevers/sickness and gains.   I have questioned PANDAS before to my DAN, he ran some viral titers and they all came back negative – tho I do not believe my DAN had any idea of what PANDAS was or how to diagnose it, and my knowledge was limited too, so he poo pooed it and we moved on – looking for answers in other ways.

 Long story short – my son is just recovering from a 7 day stretch of high fevers which concluded in pink eye, double ear infection and a bad cough/cold.  I have never seen him this sick for so long.  While sick I treated him around the clock with Ibuprofen to keep his fever at bay and ended up with a round of Omnicef to treat the bacterial infection manifested in his ears/eyes, (gooping with green discharge, so I knew I had to treat with RX)…..  Tho off the Ibuprofin now, he is still finishing up his round of RX….7 days to go actually.  This week we have noticed a tremendous leap in cognition and connections and language, as have his behavioral therapists and today – I got a note from his speech therapist at school, saying that his session was the most productive she’s ever seen with him – that he got most of the responses at 100% with no verbal prompting and initiated conversations with his peers in ways she has never seen before.  Looking at our perspective, along with 2 others outside of the family home, I am finding a correlation of something….what I do not know.  Is it the ibuprofen – reducing brain inflammation….. is it the RX in his body that is making him sharper, etc?  

 When we Google PANDAS, his major symptoms are consistent with the following: Need for routine/control of environment (OCD)

Huge separation anxiety/generalized anticipatory anxietyTrouble sleeping/settling down to sleepBed wettingEye tics (developed just recently with in last 3 months)

Feeling as if on roller coaster (ups and downs wax and wane)Sudden onset trouble with transitions (when never a problem before)Inattention/inability to stay focused

Occasional hyperactivity/stimming/scripting I feel this is a big indication of his missing puzzle piece, but do not know how to move forward or what to do with this information.  Can anyone help?

 Work like it is all up to you...but pray like it is all up to God...

1 in 91 Children...1 in 58 Boys...1 Child Every 20 Minutes... Is Diagnosed With Autism.

 

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

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OMG " witchcraft! " -- I laughed out loud! that is what my 'old' friends and

family think about just the diet! LOL!!

:0 laura

>

> >

> >

> > Without going into huge history, I will explain that my son was diagnosed

> > with regressive autism when he was 2 years old. He lost all language, eye

> > contact, functional play skills over a period of about 6 months. Very

> > devastating. He did not utter another word until he was nearly 3, after a

> > high spike of a 105.2 fever….and that following week he made tremendous

> > gains including letter recognition and labeling of all sorts of items that I

> > had no clue he was retaining….it was as if a latent virus had burned off in

> > his brain through the high fever, and he was able to make breakthroughs

> > never attempted before.

> >

> >

> >

> > My son is now 6, completely verbal, tho not quite fully conversational. We

> > have done biomed for 4 years to include the DAN protocol, diet, oral

> > chelation and most recently YASKO, along with intense SLP, OT, behavioral

> > therapy, recreational therapy, and music therapy. He is in mainstream

> > kindergarten with a full time paraprofessional. Over the years, we have

> > notably recognized that along with high fevers, come gains – some stick,

> > some do not. We have always suspected some sort of viral/brain inflammation

> > connection with my son's symptoms, but have never been able to find a doctor

> > who could give us substantial answers as to why…or how to treat it or

> > utilize a treatment that would key into this occurrence of fevers/sickness

> > and gains. I have questioned PANDAS before to my DAN, he ran some viral

> > titers and they all came back negative – tho I do not believe my DAN had any

> > idea of what PANDAS was or how to diagnose it, and my knowledge was limited

> > too, so he poo pooed it and we moved on – looking for answers in other ways.

> >

> >

> >

> >

> > Long story short – my son is just recovering from a 7 day stretch of high

> > fevers which concluded in pink eye, double ear infection and a bad

> > cough/cold. I have never seen him this sick for so long. While sick I

> > treated him around the clock with Ibuprofen to keep his fever at bay and

> > ended up with a round of Omnicef to treat the bacterial infection manifested

> > in his ears/eyes, (gooping with green discharge, so I knew I had to treat

> > with RX)….. Tho off the Ibuprofin now, he is still finishing up his round

> > of RX….7 days to go actually. This week we have noticed a tremendous leap

> > in cognition and connections and language, as have his behavioral therapists

> > and today – I got a note from his speech therapist at school, saying that

> > his session was the most productive she's ever seen with him – that he got

> > most of the responses at 100% with no verbal prompting and initiated

> > conversations with his peers in ways she has never seen before. Looking at

> > our perspective, along with 2 others outside of the family home, I am

> > finding a correlation of something….what I do not know. Is it the ibuprofen

> > – reducing brain inflammation….. is it the RX in his body that is making him

> > sharper, etc?

> >

> >

> >

> > When we Google PANDAS, his major symptoms are consistent with the

> > following:

> >

> >

> >

> > Need for routine/control of environment (OCD)

> >

> > Huge separation anxiety/generalized anticipatory anxiety

> >

> > Trouble sleeping/settling down to sleep

> >

> > Bed wetting

> >

> > Eye tics (developed just recently with in last 3 months)

> >

> > Feeling as if on roller coaster (ups and downs wax and wane)

> >

> > Sudden onset trouble with transitions (when never a problem before)

> >

> > Inattention/inability to stay focused

> >

> > Occasional hyperactivity/stimming/scripting

> >

> >

> >

> > I feel this is a big indication of his missing puzzle piece, but do not

> > know how to move forward or what to do with this information. Can anyone

> > help?

> >

> >

> >

> > *Work like it is all up to you...but pray like it is all up to God...*

> >

> > 1 in 91 Children...1 in 58 Boys...1 *Child Every* 20 Minutes... Is

> > Diagnosed With Autism.

> >

> >

> >

> >

>

>

>

> --

> Toni

>

> ------

> Mind like a steel trap...

> Rusty and illegal in 37 states.

>

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Toni, Omnicef can lower NFKappa B which is a pro-inflammatory cytokine. I find

that most antibiotics will do this, and our kids will show gains with them. So

it is brain inflammation. Especially if Pandas is part of the picture (or Lyme).

However, it is difficult to keep my son on long term antibiotics because of his

chronic dysbiosis.

It may be worthwhile to consult with or Dr Bouboulis (both Pandas

experts).

Good luck,

Pam

> >

> > >

> > >

> > > Without going into huge history, I will explain that my son was diagnosed

> > > with regressive autism when he was 2 years old. He lost all language, eye

> > > contact, functional play skills over a period of about 6 months. Very

> > > devastating. He did not utter another word until he was nearly 3, after a

> > > high spike of a 105.2 fever….and that following week he made tremendous

> > > gains including letter recognition and labeling of all sorts of items that

I

> > > had no clue he was retaining….it was as if a latent virus had burned off

in

> > > his brain through the high fever, and he was able to make breakthroughs

> > > never attempted before.

> > >

> > >

> > >

> > > My son is now 6, completely verbal, tho not quite fully conversational.

We

> > > have done biomed for 4 years to include the DAN protocol, diet, oral

> > > chelation and most recently YASKO, along with intense SLP, OT, behavioral

> > > therapy, recreational therapy, and music therapy. He is in mainstream

> > > kindergarten with a full time paraprofessional. Over the years, we have

> > > notably recognized that along with high fevers, come gains – some stick,

> > > some do not. We have always suspected some sort of viral/brain

inflammation

> > > connection with my son's symptoms, but have never been able to find a

doctor

> > > who could give us substantial answers as to why…or how to treat it or

> > > utilize a treatment that would key into this occurrence of fevers/sickness

> > > and gains. I have questioned PANDAS before to my DAN, he ran some viral

> > > titers and they all came back negative – tho I do not believe my DAN had

any

> > > idea of what PANDAS was or how to diagnose it, and my knowledge was

limited

> > > too, so he poo pooed it and we moved on – looking for answers in other

ways.

> > >

> > >

> > >

> > >

> > > Long story short – my son is just recovering from a 7 day stretch of high

> > > fevers which concluded in pink eye, double ear infection and a bad

> > > cough/cold. I have never seen him this sick for so long. While sick I

> > > treated him around the clock with Ibuprofen to keep his fever at bay and

> > > ended up with a round of Omnicef to treat the bacterial infection

manifested

> > > in his ears/eyes, (gooping with green discharge, so I knew I had to treat

> > > with RX)….. Tho off the Ibuprofin now, he is still finishing up his round

> > > of RX….7 days to go actually. This week we have noticed a tremendous leap

> > > in cognition and connections and language, as have his behavioral

therapists

> > > and today – I got a note from his speech therapist at school, saying that

> > > his session was the most productive she's ever seen with him – that he got

> > > most of the responses at 100% with no verbal prompting and initiated

> > > conversations with his peers in ways she has never seen before. Looking

at

> > > our perspective, along with 2 others outside of the family home, I am

> > > finding a correlation of something….what I do not know. Is it the

ibuprofen

> > > – reducing brain inflammation….. is it the RX in his body that is making

him

> > > sharper, etc?

> > >

> > >

> > >

> > > When we Google PANDAS, his major symptoms are consistent with the

> > > following:

> > >

> > >

> > >

> > > Need for routine/control of environment (OCD)

> > >

> > > Huge separation anxiety/generalized anticipatory anxiety

> > >

> > > Trouble sleeping/settling down to sleep

> > >

> > > Bed wetting

> > >

> > > Eye tics (developed just recently with in last 3 months)

> > >

> > > Feeling as if on roller coaster (ups and downs wax and wane)

> > >

> > > Sudden onset trouble with transitions (when never a problem before)

> > >

> > > Inattention/inability to stay focused

> > >

> > > Occasional hyperactivity/stimming/scripting

> > >

> > >

> > >

> > > I feel this is a big indication of his missing puzzle piece, but do not

> > > know how to move forward or what to do with this information. Can anyone

> > > help?

> > >

> > >

> > >

> > > *Work like it is all up to you...but pray like it is all up to God...*

> > >

> > > 1 in 91 Children...1 in 58 Boys...1 *Child Every* 20 Minutes... Is

> > > Diagnosed With Autism.

> > >

> > >

> > >

> > >

> >

> >

> >

> > --

> > Toni

> >

> > ------

> > Mind like a steel trap...

> > Rusty and illegal in 37 states.

> >

>

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Jen, my son is basically recovered except this stupid jargon he has - but when

he got a fever - his speech is 100%, better than average. (I would say, better

than his peers) ....

If you figure this out - or have some ideas -- please post.

thanks! laura:)

PS. I've been looking into viral - the herpes simplex virus can cause brain

inflammation -- there was a guy that got rid of this virus using zinc gluconate

here is his site:

http://george-eby-research.com/html/herpes.html

He also said that you could use MMS - which I think I am going to start up

again. (I have it on hand!)

I'm also going to look into the parasite thing.

>

> Without going into huge history, I will explain that my son was diagnosed

> with regressive autism when he was 2 years old. He lost all language, eye

> contact, functional play skills over a period of about 6 months. Very

> devastating. He did not utter another word until he was nearly 3, after a

> high spike of a 105.2 fever..and that following week he made tremendous

> gains including letter recognition and labeling of all sorts of items that I

> had no clue he was retaining..it was as if a latent virus had burned off in

> his brain through the high fever, and he was able to make breakthroughs

> never attempted before.

>

>

>

> My son is now 6, completely verbal, tho not quite fully conversational. We

> have done biomed for 4 years to include the DAN protocol, diet, oral

> chelation and most recently YASKO, along with intense SLP, OT, behavioral

> therapy, recreational therapy, and music therapy. He is in mainstream

> kindergarten with a full time paraprofessional. Over the years, we have

> notably recognized that along with high fevers, come gains - some stick,

> some do not. We have always suspected some sort of viral/brain inflammation

> connection with my son's symptoms, but have never been able to find a doctor

> who could give us substantial answers as to why.or how to treat it or

> utilize a treatment that would key into this occurrence of fevers/sickness

> and gains. I have questioned PANDAS before to my DAN, he ran some viral

> titers and they all came back negative - tho I do not believe my DAN had any

> idea of what PANDAS was or how to diagnose it, and my knowledge was limited

> too, so he poo pooed it and we moved on - looking for answers in other ways.

>

>

>

>

> Long story short - my son is just recovering from a 7 day stretch of high

> fevers which concluded in pink eye, double ear infection and a bad

> cough/cold. I have never seen him this sick for so long. While sick I

> treated him around the clock with Ibuprofen to keep his fever at bay and

> ended up with a round of Omnicef to treat the bacterial infection manifested

> in his ears/eyes, (gooping with green discharge, so I knew I had to treat

> with RX)... Tho off the Ibuprofin now, he is still finishing up his round

> of RX..7 days to go actually. This week we have noticed a tremendous leap

> in cognition and connections and language, as have his behavioral therapists

> and today - I got a note from his speech therapist at school, saying that

> his session was the most productive she's ever seen with him - that he got

> most of the responses at 100% with no verbal prompting and initiated

> conversations with his peers in ways she has never seen before. Looking at

> our perspective, along with 2 others outside of the family home, I am

> finding a correlation of something..what I do not know. Is it the ibuprofen

> - reducing brain inflammation... is it the RX in his body that is making him

> sharper, etc?

>

>

>

> When we Google PANDAS, his major symptoms are consistent with the following:

>

>

>

> Need for routine/control of environment (OCD)

>

> Huge separation anxiety/generalized anticipatory anxiety

>

> Trouble sleeping/settling down to sleep

>

> Bed wetting

>

> Eye tics (developed just recently with in last 3 months)

>

> Feeling as if on roller coaster (ups and downs wax and wane)

>

> Sudden onset trouble with transitions (when never a problem before)

>

> Inattention/inability to stay focused

>

> Occasional hyperactivity/stimming/scripting

>

>

>

> I feel this is a big indication of his missing puzzle piece, but do not know

> how to move forward or what to do with this information. Can anyone help?

>

>

>

> Work like it is all up to you...but pray like it is all up to God...

>

> 1 in 91 Children...1 in 58 Boys...1 Child Every 20 Minutes... Is Diagnosed

> With Autism.

>

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I have seen reported gains from antibiotics, ibuprofen, and fevers.

If he were off of the fevers, ibuprofen and antibiotics, and then

you gave him the ibuprofen again, you could then see what effect it

has. If it is not the answer, it could be either the fever,

antibiotic or both. ly, it could be that all three helped.

Realize that there are much more safer anti-inflammatories than

ibuprofen. Ibuprofen has been linked to permanent intestinal

damage, and it definitely left me with chronic stomach problems

after taking it a month. Therefore, I suggest using other things

for inflammation, and I believe that inflammation is a major cause

of symptoms for those with autism. We use Modfilan and turmeric,

mostly. See what your practitioner says is good for your family.

Love and prayers,

Heidi N

From :

"Is it the ibuprofen

- reducing brain inflammation.

... is it the RX in his body that is

making him

sharper, etc?"

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Salicylates are a problem in many with autism. For me, aspirin is

awful. I became intolerant to aspirin, even baby aspirin. I suggest

Googling " salicylates autism " for more information before trying this.

Even if one tolerates it short term, I would be fearful of using it long

term.

Love and prayers,

Heidi N

" Take Two Aspirins Daily - For some people, aspirin works wonders for their

herpes outbreaks. Simply take two aspirin daily. "

per the article i googled online, it also helps kill parasites.

So, if this is a herpes like virus that causes the brain erosion, such as

Dr. Goldberg's new book says, then that is why the aspirin does " wonders " .

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I buy most on the shelf - when I can find it (dye free, that is) - and leave a

little for the other special needs families in town. LOL.

>

> My kids do ok on motrin (ibuprofen) and my daughter is super sensitive to

> other phenols/salicylates. THANK GOD they can do motrin. (It's dye free)...

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It does sound like your child has PANDAS. You can get more info about PANDAS at www.pandasnetwork.org There are 2 good PANDAS docs: Dan Rossignol in FLA and SCott in NJ. You need to get him on either azithromycin or augmentin. The motrin does reduce inflamation and helps w/ the symptoms. The die free liquid childrens motrin is easier on the gut.

Subject: Could it be PANDAS? Brain Inflammation?To: mb12 valtrex Date: Friday, March 11, 2011, 6:49 PM

Without going into huge history, I will explain that my son was diagnosed with regressive autism when he was 2 years old. He lost all language, eye contact, functional play skills over a period of about 6 months. Very devastating. He did not utter another word until he was nearly 3, after a high spike of a 105.2 fever….and that following week he made tremendous gains including letter recognition and labeling of all sorts of items that I had no clue he was retaining….it was as if a latent virus had burned off in his brain through the high fever, and he was able to make breakthroughs never attempted before.

My son is now 6, completely verbal, tho not quite fully conversational. We have done biomed for 4 years to include the DAN protocol, diet, oral chelation and most recently YASKO, along with intense SLP, OT, behavioral therapy, recreational therapy, and music therapy. He is in mainstream kindergarten with a full time paraprofessional. Over the years, we have notably recognized that along with high fevers, come gains – some stick, some do not. We have always suspected some sort of viral/brain inflammation connection with my son’s symptoms, but have never been able to find a doctor who could give us substantial answers as to why…or how to treat it or utilize a treatment that would key into this occurrence of fevers/sickness and gains. I have questioned PANDAS before to my DAN, he ran some viral titers and they all came back negative – tho I do not believe my DAN had any idea of what

PANDAS was or how to diagnose it, and my knowledge was limited too, so he poo pooed it and we moved on – looking for answers in other ways.

Long story short – my son is just recovering from a 7 day stretch of high fevers which concluded in pink eye, double ear infection and a bad cough/cold. I have never seen him this sick for so long. While sick I treated him around the clock with Ibuprofen to keep his fever at bay and ended up with a round of Omnicef to treat the bacterial infection manifested in his ears/eyes, (gooping with green discharge, so I knew I had to treat with RX)….. Tho off the Ibuprofin now, he is still finishing up his round of RX….7 days to go actually. This week we have noticed a tremendous leap in cognition and connections and language, as have his behavioral therapists and today – I got a note from his speech therapist at school, saying that his session was the most productive she’s ever seen with him – that he got most of the responses at 100% with no verbal prompting and initiated conversations with his

peers in ways she has never seen before. Looking at our perspective, along with 2 others outside of the family home, I am finding a correlation of something….what I do not know. Is it the ibuprofen – reducing brain inflammation….. is it the RX in his body that is making him sharper, etc?

When we Google PANDAS, his major symptoms are consistent with the following:

Need for routine/control of environment (OCD)

Huge separation anxiety/generalized anticipatory anxiety

Trouble sleeping/settling down to sleep

Bed wetting

Eye tics (developed just recently with in last 3 months)

Feeling as if on roller coaster (ups and downs wax and wane)

Sudden onset trouble with transitions (when never a problem before)

Inattention/inability to stay focused Occasional hyperactivity/stimming/scripting

I feel this is a big indication of his missing puzzle piece, but do not know how to move forward or what to do with this information. Can anyone help?

Work like it is all up to you...but pray like it is all up to God...

1 in 91 Children...1 in 58 Boys...1 Child Every 20 Minutes... Is Diagnosed With Autism.

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