Re: Hello New Here - **LONG**

[Guest guest]

I stayed away from the stimulants with my son. We use Strattera and it has been.

God-send! He was acting just like your son and taking him off allergenic foods

plus Strattera helped immensely! Maybe ask for Strattera instead of Concerta?

Rhonda Masengale

On Feb 5, 2011, at 6:30 AM, " Donna G " <gander627@...> wrote:

> Hi, I am new here and greatly interested in your group. Let me fill you in on

us. My husband and I have a beautiful 7 year old boy, Donovan, who has severe

ADHD. I had been following , with a bit of resentment, conventional medicine. I

am a nurse practitioner (adult acute care) and in my soul I knew this was not

the answer on its own. I took a leap of faith after doing much reading and went

to see a Holistic MD Pediatrician, and switched his medication dosing/management

to a wonderful neurologist who specializes in ADHD and who HAS ADHD himself

(there's someone you dont find every day - he can EMPATHIZE with my son easily).

I had bad experiences when trying to allow a psychiatrist do his meds - he

wanted to put him on things like Risperdal and such....uhhh NO WAY !

>

> Anyway the holistic pediatrician tested him for food allergies, (igG) and did

stool, urine testing, a myriad of blood tests. Findings show gluten

intolerance(high Gliadan antibody) and casein intolerance (casein peptide in the

urine) stool showed much bowel inflammation but not signif yeast and no

parasites. His thyroid was stressed, his Vit D level very low. He showed

positive for a genetic problem with folate metabolism.

>

> She put him on a new diet. He is on a gluten and casein free diet. We elimated

ALL processed foods. All preservatives and dyes. We eat organic only and mostly

fresh. We get grass fed beef and organic poulty from a local farm now. His

behavior and allergy symptoms improved 100%. She placed him on high dose fish

oil, and a dopamine uptake supplement called Lumina by Metagenics. He has a

genetic deficiency in Folate metabolism and she put him on Fola-Pro by

Metagenics to help methylation. He is on HMF Neuro probiotics twice daily. He

takes 6, 000 units of Vit D daily. He was on Ritalin XR 40 mg daily at this

time, he developed a severe eye motor tic. I held my ground with neurologist and

weaned that Ritalin down to about 15 mg daily...The tic RESOLVED ...and Donovan

did fine in school, still talked a bit too much but generally his behavior was

acceptable and actually showed improvement. Fast forward to now.

>

> Since return to school after Christmas break, he has done a 360 on behavior.

He is easily irritated, talks incessantly, doesnt follow direction without

repeated coaching, gets up in class, interrupts class, argues with adults, etc

AND has actually hit people once last week and once this week. Interestingly,

his allergy symptoms (sneezing, congestion, bed wetting are all reappearing) We

are certain he is not getting gluten anywhere.

>

> Thank GOD his teacher and principal are amazingly patient, working with him

but they are getting a bit frustrated. I communicate constantly with them so

they do know we are trying to get him back to where he was. At first we all

thought it was the break that caused a lack of routine or structure but its been

a month and he is well into the school routine.

>

> I took him back to neurologist. He says it shows the Ritalin just isnt working

for him anymore at 15 mg. I said well we cannot crank up the Ritalin dose again,

the eye tic will come back (Donovans tic was his eyes ROLLED up leftward about 2

times a min) We decided lets try a longer acting but slower to peak and slower

to disappate rx like Concerta. First week on Concerta 18 mg and not so good...he

hit at a teacher and a girl this week. If he continues to hit people they will

suspend him or expell him. We moved to this town in July 2010 JUST to get him

into this excellent school district. Neurologist increased Concerta to 27 mg

daily yesterday.

>

> Ok I am at my wits end. Going to get a hold of holistic pediatrician today but

any suggestions ?? What is diet ? donovan was on a modified GAPS diet for a

while but is now just as I mentioned above.

>

> I think my son needs the Concerta right now so be it. I dont like him on

stimulants but getting expelled is NOT an option. I work full time and make the

money, my husband makes less than $20,000/year so I cannot stay home. I work for

a wonderful MD who lets me take off when I need to get him to appointments and

my hubs does the rest. My husband is usually home when Donovan gets off school.

Donovan goes to a daycare latchkey. The school latchkey kicked him out 2 weeks

ago for this horrid behavior.

>

> My goal is to get to the bottom of this big change in him. I appreciate every

one who has read this far and all your suggestions !!

>

> Donna Gilliam, mom to Donovan age 7

>

>

[Guest guest]

Stimulants are awful for our child. He has PANDAS + Lyme so his tics get really

bad on the Ritalin-family of meds. Strattera has not worked either since he has

been on antibiotics/antivirals. We are now going back to Clonidine which seems

to be helping. We saw the most improvement with antibiotics and are now seeing

even more improvement with Valtrex.

DMG may be something that will help with methylation as well as Alpha lipoic

acid. Any suggestions from the drs on B vitamins? Sounds like there are many

things that need to be found with your child before the right med (if any) will

help. Possibly check on strep, viruses (HHV1-8), Mycoplasm pneumoniae, IGeneX

Lyme testing, etc. Just one mom’s opinion....Good luck.

From: [mailto: ] On Behalf Of Rhonda

Masengale

Sent: February-05-11 3:38 PM

Subject: Re: Hello New Here - **LONG**

I stayed away from the stimulants with my son. We use Strattera and it has been.

God-send! He was acting just like your son and taking him off allergenic foods

plus Strattera helped immensely! Maybe ask for Strattera instead of Concerta?

Rhonda Masengale

On Feb 5, 2011, at 6:30 AM, " Donna G " <gander627@...

<mailto:gander627%40> > wrote:

> Hi, I am new here and greatly interested in your group. Let me fill you in on

us. My husband and I have a beautiful 7 year old boy, Donovan, who has severe

ADHD. I had been following , with a bit of resentment, conventional medicine. I

am a nurse practitioner (adult acute care) and in my soul I knew this was not

the answer on its own. I took a leap of faith after doing much reading and went

to see a Holistic MD Pediatrician, and switched his medication dosing/management

to a wonderful neurologist who specializes in ADHD and who HAS ADHD himself

(there's someone you dont find every day - he can EMPATHIZE with my son easily).

I had bad experiences when trying to allow a psychiatrist do his meds - he

wanted to put him on things like Risperdal and such....uhhh NO WAY !

>

> Anyway the holistic pediatrician tested him for food allergies, (igG) and did

stool, urine testing, a myriad of blood tests. Findings show gluten

intolerance(high Gliadan antibody) and casein intolerance (casein peptide in the

urine) stool showed much bowel inflammation but not signif yeast and no

parasites. His thyroid was stressed, his Vit D level very low. He showed

positive for a genetic problem with folate metabolism.

>

> She put him on a new diet. He is on a gluten and casein free diet. We elimated

ALL processed foods. All preservatives and dyes. We eat organic only and mostly

fresh. We get grass fed beef and organic poulty from a local farm now. His

behavior and allergy symptoms improved 100%. She placed him on high dose fish

oil, and a dopamine uptake supplement called Lumina by Metagenics. He has a

genetic deficiency in Folate metabolism and she put him on Fola-Pro by

Metagenics to help methylation. He is on HMF Neuro probiotics twice daily. He

takes 6, 000 units of Vit D daily. He was on Ritalin XR 40 mg daily at this

time, he developed a severe eye motor tic. I held my ground with neurologist and

weaned that Ritalin down to about 15 mg daily...The tic RESOLVED ...and Donovan

did fine in school, still talked a bit too much but generally his behavior was

acceptable and actually showed improvement. Fast forward to now.

>

> Since return to school after Christmas break, he has done a 360 on behavior.

He is easily irritated, talks incessantly, doesnt follow direction without

repeated coaching, gets up in class, interrupts class, argues with adults, etc

AND has actually hit people once last week and once this week. Interestingly,

his allergy symptoms (sneezing, congestion, bed wetting are all reappearing) We

are certain he is not getting gluten anywhere.

>

> Thank GOD his teacher and principal are amazingly patient, working with him

but they are getting a bit frustrated. I communicate constantly with them so

they do know we are trying to get him back to where he was. At first we all

thought it was the break that caused a lack of routine or structure but its been

a month and he is well into the school routine.

>

> I took him back to neurologist. He says it shows the Ritalin just isnt working

for him anymore at 15 mg. I said well we cannot crank up the Ritalin dose again,

the eye tic will come back (Donovans tic was his eyes ROLLED up leftward about 2

times a min) We decided lets try a longer acting but slower to peak and slower

to disappate rx like Concerta. First week on Concerta 18 mg and not so good...he

hit at a teacher and a girl this week. If he continues to hit people they will

suspend him or expell him. We moved to this town in July 2010 JUST to get him

into this excellent school district. Neurologist increased Concerta to 27 mg

daily yesterday.

>

> Ok I am at my wits end. Going to get a hold of holistic pediatrician today but

any suggestions ?? What is diet ? donovan was on a modified GAPS diet for a

while but is now just as I mentioned above.

>

> I think my son needs the Concerta right now so be it. I dont like him on

stimulants but getting expelled is NOT an option. I work full time and make the

money, my husband makes less than $20,000/year so I cannot stay home. I work for

a wonderful MD who lets me take off when I need to get him to appointments and

my hubs does the rest. My husband is usually home when Donovan gets off school.

Donovan goes to a daycare latchkey. The school latchkey kicked him out 2 weeks

ago for this horrid behavior.

>

> My goal is to get to the bottom of this big change in him. I appreciate every

one who has read this far and all your suggestions !!

>

> Donna Gilliam, mom to Donovan age 7

>

>

[Guest guest]

Hi,

I would bet that his diet is heavy in soy proteins...  For us, that is a huge

huge problem.  When I hear of aggression and especially oppositional behavior

or

irritability, I instantly think soy. Especially soy lecithen.  It takes a

couple

of weeks or more for symptoms to start, but once you pull it away it takes

almost exactly 5 days to get out of the system.  Then, if it is soy related

mood

changes, day 6 they just seem a lot less angry and frustrated and unhappy.  The

habit of the behaviors hangs around longer, and a residual anger at you and

himself, but you can tell within the first week, and the kid can tell by the

second week, that life just isn't nearly as .... difficult (or a living hell to

be more precise).

The other problem I see (coming from a PANDAS point of view and experience) is

the probiotics.  I would really suggest (in the presence of a tic even if it is

stimulant related), and the incessant chatter, that you consider switching to a

single strain like kyodophilus for at least a month and see if that has any

benefit.  Several strains of probiotics can really exacerbate OCD and ADD type

behaviors - rather make the brain constantly 'flicker', because they stimulate

different parts of the immune system (typically good for typical people, bad for

someone if both arms of the immune system are over-activated), and my experience

w/ 2 kids who combined sound a lot like yours is that they do not do well on

probiotics, no matter how much I have believed in them.  I also have CFS and a

PANDAS-like problem w/strep, and I cannot take probiotics in any form.  We just

have to use the antifungals. 

The diet is a very low-allergy diet w/no dairy and no whole grains, with

limits on other things as well.  It's high protein low carb very limited sugar,

no allergenic foods like berries, nuts, and tropical fruits.  The rest varies

per kid.  GFCF diet very often ends up in the long run making things worse,

because the focus is trying to get maximum nutrition with other whole grains and

nutrient-dense foods.  When you first go GFCF, you often see a big improvement

-

it can be for many, though, the simple removal of dairy itself.  Then, though,

steady intake of all the allergenic replacement foods starts setting off the

immune system 6 different ways and ends up doing more harm than good.  Even if

a

kid eats only 3 foods a day, if they take a standard multivitamin, they may

still do better than some on a high nutrient GFCF diet.  ly, if an immune

system is very activated, it is very likely that no matter how much nutrition

you pump into a kid, it's unlikely that the body is absorbing it

properly.  Immune activation can halt absorption of a lot of vitamins and

minerals in it's tracks, and in some cases, it's actually a protective mechanism

in the fight against certain viruses and bacteria.  Like chronic anemia -

sometimes no matter how much iron you give (I certainly know about this one),

your body simply will NOT absorb it if you have a chronic strep infection - it

will transfer it somewhere else and store it.    So while GFCF originated on

the

paradigm that particles in gluten and casein were somehow crossing the blood

brain barrier and causing intoxication, the paradigm is that immune

activation is the cause of the cognitive problems (inflammation in the tiny

blood vessels in the brain for instance, restricting blood flow to the temporal

and frontal lobes - known areas for the dysfunction in autism and similar or

identical to that found in CFS).  This immune activation, which was

hypothesized

many years back, was proven in the study published out of Jons Hopkins a few

years back...

It's very common for gliadin to be high in , but it does not literally point

to an intolerance for all gluten.  Most kids can still tolerate highly

processed

wheat in their diets, despite elevated gliadin levels.  Many of us have seen

that marker go way down on the protocol despite wheat (highly

refined/processed) in the diet.  It used to be definted in the 50s (? I think,

or 60s) as a marker for inflammation in the bowel.  I know that's contrary to

what DAN! and holistic doctors say, but that's our experience.  We all do

remain

off cow's dairy, but not all casein together - for most (not all) goats and

sheep products are still ok (hello manchego cheese, romano cheese, goat cheese,

feta - yum!).  Cow's milk is known to increase cytokines that are inflammatory

(ok for a normal healthy body, baaaad for ).  Cytokines ARE known to cross

the blood brain barrier and be very active in the brain, whereas they still

haven't actually proved that casein particles do.  It's similar findings,

different paradigms as to what the labs mean and how to address it.  I

personally like the way better - way easier, cheaper, tastier, and my kid

did much better than when we were GFCF.  I was always a high-nutrient whole

grain berry nut fruit eating, no processed foods no preservatives whole foods

health food store kind of girl... and I was never sicker or in more pain all

over my body than then.  Believe me, I love those foods - they taste far better

to me, but when I stopped and went to plain old white bread (well sourdough is

actually quite yum), my constant pain went away, and most of my autonomic

problems, and probably half of the fatigue.  My brain worked better too.  I

never understood that until I discovered Dr Goldberg.  It never made sense to

me.  We're supposed to eat whole grains!  And nuts!  And all those foods rich

in

amino acids and fatty acids and vitamins etc etc etc.  So why did that very

healthy diet make me so freakin sick?  Anyway, I just went in to all that

because it can be very hard for someone to switch from one paradigm to another

when it comes to diet - it was for me - but we see time and time again

improvements after the switch, even when we swore GFCF was the only way our kids

made any improvement in the beginning.

HTH

________________________________

From: Rhonda Masengale <rhondamasengale@...>

" " < >

Sent: Sat, February 5, 2011 1:37:50 PM

Subject: Re: Hello New Here - **LONG**

 

I stayed away from the stimulants with my son. We use Strattera and it has been.

God-send! He was acting just like your son and taking him off allergenic foods

plus Strattera helped immensely! Maybe ask for Strattera instead of Concerta?

Rhonda Masengale

On Feb 5, 2011, at 6:30 AM, " Donna G " <gander627@...> wrote:

> Hi, I am new here and greatly interested in your group. Let me fill you in on

>us. My husband and I have a beautiful 7 year old boy, Donovan, who has severe

>ADHD. I had been following , with a bit of resentment, conventional medicine. I

>am a nurse practitioner (adult acute care) and in my soul I knew this was not

>the answer on its own. I took a leap of faith after doing much reading and went

>to see a Holistic MD Pediatrician, and switched his medication

dosing/management

>to a wonderful neurologist who specializes in ADHD and who HAS ADHD himself

>(there's someone you dont find every day - he can EMPATHIZE with my son

easily).

>I had bad experiences when trying to allow a psychiatrist do his meds - he

>wanted to put him on things like Risperdal and such....uhhh NO WAY !

>

> Anyway the holistic pediatrician tested him for food allergies, (igG) and did

>stool, urine testing, a myriad of blood tests. Findings show gluten

>intolerance(high Gliadan antibody) and casein intolerance (casein peptide in

the

>urine) stool showed much bowel inflammation but not signif yeast and no

>parasites. His thyroid was stressed, his Vit D level very low. He showed

>positive for a genetic problem with folate metabolism.

>

>

> She put him on a new diet. He is on a gluten and casein free diet. We elimated

>ALL processed foods. All preservatives and dyes. We eat organic only and mostly

>fresh. We get grass fed beef and organic poulty from a local farm now. His

>behavior and allergy symptoms improved 100%. She placed him on high dose fish

>oil, and a dopamine uptake supplement called Lumina by Metagenics. He has a

>genetic deficiency in Folate metabolism and she put him on Fola-Pro by

>Metagenics to help methylation. He is on HMF Neuro probiotics twice daily. He

>takes 6, 000 units of Vit D daily. He was on Ritalin XR 40 mg daily at this

>time, he developed a severe eye motor tic. I held my ground with neurologist

and

>weaned that Ritalin down to about 15 mg daily...The tic RESOLVED ...and Donovan

>did fine in school, still talked a bit too much but generally his behavior was

>acceptable and actually showed improvement. Fast forward to now.

>

>

> Since return to school after Christmas break, he has done a 360 on behavior.

He

>is easily irritated, talks incessantly, doesnt follow direction without

repeated

>coaching, gets up in class, interrupts class, argues with adults, etc AND has

>actually hit people once last week and once this week. Interestingly, his

>allergy symptoms (sneezing, congestion, bed wetting are all reappearing) We are

>certain he is not getting gluten anywhere.

>

>

> Thank GOD his teacher and principal are amazingly patient, working with him

but

>they are getting a bit frustrated. I communicate constantly with them so they

do

>know we are trying to get him back to where he was. At first we all thought it

>was the break that caused a lack of routine or structure but its been a month

>and he is well into the school routine.

>

>

> I took him back to neurologist. He says it shows the Ritalin just isnt working

>for him anymore at 15 mg. I said well we cannot crank up the Ritalin dose

again,

>the eye tic will come back (Donovans tic was his eyes ROLLED up leftward about

2

>times a min) We decided lets try a longer acting but slower to peak and slower

>to disappate rx like Concerta. First week on Concerta 18 mg and not so

good...he

>hit at a teacher and a girl this week. If he continues to hit people they will

>suspend him or expell him. We moved to this town in July 2010 JUST to get him

>into this excellent school district. Neurologist increased Concerta to 27 mg

>daily yesterday.

>

>

> Ok I am at my wits end. Going to get a hold of holistic pediatrician today but

>any suggestions ?? What is diet ? donovan was on a modified GAPS diet for

a

>while but is now just as I mentioned above.

>

>

> I think my son needs the Concerta right now so be it. I dont like him on

>stimulants but getting expelled is NOT an option. I work full time and make the

>money, my husband makes less than $20,000/year so I cannot stay home. I work

for

>a wonderful MD who lets me take off when I need to get him to appointments and

>my hubs does the rest. My husband is usually home when Donovan gets off school.

>Donovan goes to a daycare latchkey. The school latchkey kicked him out 2 weeks

>ago for this horrid behavior.

>

>

> My goal is to get to the bottom of this big change in him. I appreciate every

>one who has read this far and all your suggestions !!

>

> Donna Gilliam, mom to Donovan age 7

>

>

[Guest guest]

Interesting the point about Soy Protein. What milk do you use as a substitute?

________________________________

From: <thecolemans4@...>

Sent: Sat, February 5, 2011 7:37:19 PM

Subject: Re: Hello New Here - **LONG**

Hi,

I would bet that his diet is heavy in soy proteins... For us, that is a huge

huge problem. When I hear of aggression and especially oppositional behavior or

irritability, I instantly think soy. Especially soy lecithen. It takes a couple

of weeks or more for symptoms to start, but once you pull it away it takes

almost exactly 5 days to get out of the system. Then, if it is soy related mood

changes, day 6 they just seem a lot less angry and frustrated and unhappy. The

habit of the behaviors hangs around longer, and a residual anger at you and

himself, but you can tell within the first week, and the kid can tell by the

second week, that life just isn't nearly as .... difficult (or a living hell to

be more precise).

The other problem I see (coming from a PANDAS point of view and experience) is

the probiotics. I would really suggest (in the presence of a tic even if it is

stimulant related), and the incessant chatter, that you consider switching to a

single strain like kyodophilus for at least a month and see if that has any

benefit. Several strains of probiotics can really exacerbate OCD and ADD type

behaviors - rather make the brain constantly 'flicker', because they stimulate

different parts of the immune system (typically good for typical people, bad for

someone if both arms of the immune system are over-activated), and my experience

w/ 2 kids who combined sound a lot like yours is that they do not do well on

probiotics, no matter how much I have believed in them. I also have CFS and a

PANDAS-like problem w/strep, and I cannot take probiotics in any form. We just

have to use the antifungals.

The diet is a very low-allergy diet w/no dairy and no whole grains, with

limits on other things as well. It's high protein low carb very limited sugar,

no allergenic foods like berries, nuts, and tropical fruits. The rest varies

per kid. GFCF diet very often ends up in the long run making things worse,

because the focus is trying to get maximum nutrition with other whole grains and

nutrient-dense foods. When you first go GFCF, you often see a big improvement -

it can be for many, though, the simple removal of dairy itself. Then, though,

steady intake of all the allergenic replacement foods starts setting off the

immune system 6 different ways and ends up doing more harm than good. Even if a

kid eats only 3 foods a day, if they take a standard multivitamin, they may

still do better than some on a high nutrient GFCF diet. ly, if an immune

system is very activated, it is very likely that no matter how much nutrition

you pump into a kid, it's unlikely that the body is absorbing it

properly. Immune activation can halt absorption of a lot of vitamins and

minerals in it's tracks, and in some cases, it's actually a protective mechanism

in the fight against certain viruses and bacteria. Like chronic anemia -

sometimes no matter how much iron you give (I certainly know about this one),

your body simply will NOT absorb it if you have a chronic strep infection - it

will transfer it somewhere else and store it. So while GFCF originated on the

paradigm that particles in gluten and casein were somehow crossing the blood

brain barrier and causing intoxication, the paradigm is that immune

activation is the cause of the cognitive problems (inflammation in the tiny

blood vessels in the brain for instance, restricting blood flow to the temporal

and frontal lobes - known areas for the dysfunction in autism and similar or

identical to that found in CFS). This immune activation, which was hypothesized

many years back, was proven in the study published out of Jons Hopkins a few

years back...

It's very common for gliadin to be high in , but it does not literally point

to an intolerance for all gluten. Most kids can still tolerate highly processed

wheat in their diets, despite elevated gliadin levels. Many of us have seen

that marker go way down on the protocol despite wheat (highly

refined/processed) in the diet. It used to be definted in the 50s (? I think,

or 60s) as a marker for inflammation in the bowel. I know that's contrary to

what DAN! and holistic doctors say, but that's our experience. We all do remain

off cow's dairy, but not all casein together - for most (not all) goats and

sheep products are still ok (hello manchego cheese, romano cheese, goat cheese,

feta - yum!). Cow's milk is known to increase cytokines that are inflammatory

(ok for a normal healthy body, baaaad for ). Cytokines ARE known to cross

the blood brain barrier and be very active in the brain, whereas they still

haven't actually proved that casein particles do. It's similar findings,

different paradigms as to what the labs mean and how to address it. I

personally like the way better - way easier, cheaper, tastier, and my kid

did much better than when we were GFCF. I was always a high-nutrient whole

grain berry nut fruit eating, no processed foods no preservatives whole foods

health food store kind of girl... and I was never sicker or in more pain all

over my body than then. Believe me, I love those foods - they taste far better

to me, but when I stopped and went to plain old white bread (well sourdough is

actually quite yum), my constant pain went away, and most of my autonomic

problems, and probably half of the fatigue. My brain worked better too. I

never understood that until I discovered Dr Goldberg. It never made sense to

me. We're supposed to eat whole grains! And nuts! And all those foods rich in

amino acids and fatty acids and vitamins etc etc etc. So why did that very

healthy diet make me so freakin sick? Anyway, I just went in to all that

because it can be very hard for someone to switch from one paradigm to another

when it comes to diet - it was for me - but we see time and time again

improvements after the switch, even when we swore GFCF was the only way our kids

made any improvement in the beginning.

HTH

________________________________

From: Rhonda Masengale <rhondamasengale@...>

" " < >

Sent: Sat, February 5, 2011 1:37:50 PM

Subject: Re: Hello New Here - **LONG**

I stayed away from the stimulants with my son. We use Strattera and it has been.

God-send! He was acting just like your son and taking him off allergenic foods

plus Strattera helped immensely! Maybe ask for Strattera instead of Concerta?

Rhonda Masengale

On Feb 5, 2011, at 6:30 AM, " Donna G " <gander627@...> wrote:

> Hi, I am new here and greatly interested in your group. Let me fill you in on

>us. My husband and I have a beautiful 7 year old boy, Donovan, who has severe

>ADHD. I had been following , with a bit of resentment, conventional medicine. I

>am a nurse practitioner (adult acute care) and in my soul I knew this was not

>the answer on its own. I took a leap of faith after doing much reading and went

>to see a Holistic MD Pediatrician, and switched his medication

dosing/management

>

>to a wonderful neurologist who specializes in ADHD and who HAS ADHD himself

>(there's someone you dont find every day - he can EMPATHIZE with my son

easily).

>

>I had bad experiences when trying to allow a psychiatrist do his meds - he

>wanted to put him on things like Risperdal and such....uhhh NO WAY !

>

> Anyway the holistic pediatrician tested him for food allergies, (igG) and did

>stool, urine testing, a myriad of blood tests. Findings show gluten

>intolerance(high Gliadan antibody) and casein intolerance (casein peptide in

the

>

>urine) stool showed much bowel inflammation but not signif yeast and no

>parasites. His thyroid was stressed, his Vit D level very low. He showed

>positive for a genetic problem with folate metabolism.

>

>

> She put him on a new diet. He is on a gluten and casein free diet. We elimated

>ALL processed foods. All preservatives and dyes. We eat organic only and mostly

>fresh. We get grass fed beef and organic poulty from a local farm now. His

>behavior and allergy symptoms improved 100%. She placed him on high dose fish

>oil, and a dopamine uptake supplement called Lumina by Metagenics. He has a

>genetic deficiency in Folate metabolism and she put him on Fola-Pro by

>Metagenics to help methylation. He is on HMF Neuro probiotics twice daily. He

>takes 6, 000 units of Vit D daily. He was on Ritalin XR 40 mg daily at this

>time, he developed a severe eye motor tic. I held my ground with neurologist

and

>

>weaned that Ritalin down to about 15 mg daily...The tic RESOLVED ...and Donovan

>did fine in school, still talked a bit too much but generally his behavior was

>acceptable and actually showed improvement. Fast forward to now.

>

>

> Since return to school after Christmas break, he has done a 360 on behavior.

He

>

>is easily irritated, talks incessantly, doesnt follow direction without

repeated

>

>coaching, gets up in class, interrupts class, argues with adults, etc AND has

>actually hit people once last week and once this week. Interestingly, his

>allergy symptoms (sneezing, congestion, bed wetting are all reappearing) We are

>certain he is not getting gluten anywhere.

>

>

> Thank GOD his teacher and principal are amazingly patient, working with him

but

>

>they are getting a bit frustrated. I communicate constantly with them so they

do

>

>know we are trying to get him back to where he was. At first we all thought it

>was the break that caused a lack of routine or structure but its been a month

>and he is well into the school routine.

>

>

> I took him back to neurologist. He says it shows the Ritalin just isnt working

>for him anymore at 15 mg. I said well we cannot crank up the Ritalin dose

again,

>

>the eye tic will come back (Donovans tic was his eyes ROLLED up leftward about

2

>

>times a min) We decided lets try a longer acting but slower to peak and slower

>to disappate rx like Concerta. First week on Concerta 18 mg and not so

good...he

>

>hit at a teacher and a girl this week. If he continues to hit people they will

>suspend him or expell him. We moved to this town in July 2010 JUST to get him

>into this excellent school district. Neurologist increased Concerta to 27 mg

>daily yesterday.

>

>

> Ok I am at my wits end. Going to get a hold of holistic pediatrician today but

>any suggestions ?? What is diet ? donovan was on a modified GAPS diet for

a

>

>while but is now just as I mentioned above.

>

>

> I think my son needs the Concerta right now so be it. I dont like him on

>stimulants but getting expelled is NOT an option. I work full time and make the

>money, my husband makes less than $20,000/year so I cannot stay home. I work

for

>

>a wonderful MD who lets me take off when I need to get him to appointments and

>my hubs does the rest. My husband is usually home when Donovan gets off school.

>Donovan goes to a daycare latchkey. The school latchkey kicked him out 2 weeks

>ago for this horrid behavior.

>

>

> My goal is to get to the bottom of this big change in him. I appreciate every

>one who has read this far and all your suggestions !!

>

> Donna Gilliam, mom to Donovan age 7

>

>

[Guest guest]

We don't actually bother to substitute milk for most of what we eat - very

little I cook calls for milk.  I've used rice milk but that's off the diet

now because it uses whole grain... Marcia recommends non-dairy creamer for

baking.

________________________________

From: Kay <kp_mlist@...>

Sent: Sat, February 5, 2011 11:28:36 PM

Subject: Re: Hello New Here - **LONG**

 

Interesting the point about Soy Protein. What milk do you use as a substitute?

________________________________

From: <thecolemans4@...>

Sent: Sat, February 5, 2011 7:37:19 PM

Subject: Re: Hello New Here - **LONG**

Hi,

I would bet that his diet is heavy in soy proteins... For us, that is a huge

huge problem. When I hear of aggression and especially oppositional behavior or

irritability, I instantly think soy. Especially soy lecithen. It takes a couple

of weeks or more for symptoms to start, but once you pull it away it takes

almost exactly 5 days to get out of the system. Then, if it is soy related mood

changes, day 6 they just seem a lot less angry and frustrated and unhappy. The

habit of the behaviors hangs around longer, and a residual anger at you and

himself, but you can tell within the first week, and the kid can tell by the

second week, that life just isn't nearly as .... difficult (or a living hell to

be more precise).

The other problem I see (coming from a PANDAS point of view and experience) is

the probiotics. I would really suggest (in the presence of a tic even if it is

stimulant related), and the incessant chatter, that you consider switching to a

single strain like kyodophilus for at least a month and see if that has any

benefit. Several strains of probiotics can really exacerbate OCD and ADD type

behaviors - rather make the brain constantly 'flicker', because they stimulate

different parts of the immune system (typically good for typical people, bad for

someone if both arms of the immune system are over-activated), and my experience

w/ 2 kids who combined sound a lot like yours is that they do not do well on

probiotics, no matter how much I have believed in them. I also have CFS and a

PANDAS-like problem w/strep, and I cannot take probiotics in any form. We just

have to use the antifungals.

The diet is a very low-allergy diet w/no dairy and no whole grains, with

limits on other things as well. It's high protein low carb very limited sugar,

no allergenic foods like berries, nuts, and tropical fruits. The rest varies

per kid. GFCF diet very often ends up in the long run making things worse,

because the focus is trying to get maximum nutrition with other whole grains and

nutrient-dense foods. When you first go GFCF, you often see a big improvement -

it can be for many, though, the simple removal of dairy itself. Then, though,

steady intake of all the allergenic replacement foods starts setting off the

immune system 6 different ways and ends up doing more harm than good. Even if a

kid eats only 3 foods a day, if they take a standard multivitamin, they may

still do better than some on a high nutrient GFCF diet. ly, if an immune

system is very activated, it is very likely that no matter how much nutrition

you pump into a kid, it's unlikely that the body is absorbing it

properly. Immune activation can halt absorption of a lot of vitamins and

minerals in it's tracks, and in some cases, it's actually a protective mechanism

in the fight against certain viruses and bacteria. Like chronic anemia -

sometimes no matter how much iron you give (I certainly know about this one),

your body simply will NOT absorb it if you have a chronic strep infection - it

will transfer it somewhere else and store it. So while GFCF originated on the

paradigm that particles in gluten and casein were somehow crossing the blood

brain barrier and causing intoxication, the paradigm is that immune

activation is the cause of the cognitive problems (inflammation in the tiny

blood vessels in the brain for instance, restricting blood flow to the temporal

and frontal lobes - known areas for the dysfunction in autism and similar or

identical to that found in CFS). This immune activation, which was hypothesized

many years back, was proven in the study published out of Jons Hopkins a few

years back...

It's very common for gliadin to be high in , but it does not literally point

to an intolerance for all gluten. Most kids can still tolerate highly processed

wheat in their diets, despite elevated gliadin levels. Many of us have seen

that marker go way down on the protocol despite wheat (highly

refined/processed) in the diet. It used to be definted in the 50s (? I think,

or 60s) as a marker for inflammation in the bowel. I know that's contrary to

what DAN! and holistic doctors say, but that's our experience. We all do remain

off cow's dairy, but not all casein together - for most (not all) goats and

sheep products are still ok (hello manchego cheese, romano cheese, goat cheese,

feta - yum!). Cow's milk is known to increase cytokines that are inflammatory

(ok for a normal healthy body, baaaad for ). Cytokines ARE known to cross

the blood brain barrier and be very active in the brain, whereas they still

haven't actually proved that casein particles do. It's similar findings,

different paradigms as to what the labs mean and how to address it. I

personally like the way better - way easier, cheaper, tastier, and my kid

did much better than when we were GFCF. I was always a high-nutrient whole

grain berry nut fruit eating, no processed foods no preservatives whole foods

health food store kind of girl... and I was never sicker or in more pain all

over my body than then. Believe me, I love those foods - they taste far better

to me, but when I stopped and went to plain old white bread (well sourdough is

actually quite yum), my constant pain went away, and most of my autonomic

problems, and probably half of the fatigue. My brain worked better too. I

never understood that until I discovered Dr Goldberg. It never made sense to

me. We're supposed to eat whole grains! And nuts! And all those foods rich in

amino acids and fatty acids and vitamins etc etc etc. So why did that very

healthy diet make me so freakin sick? Anyway, I just went in to all that

because it can be very hard for someone to switch from one paradigm to another

when it comes to diet - it was for me - but we see time and time again

improvements after the switch, even when we swore GFCF was the only way our kids

made any improvement in the beginning.

HTH

________________________________

From: Rhonda Masengale <rhondamasengale@...>

" " < >

Sent: Sat, February 5, 2011 1:37:50 PM

Subject: Re: Hello New Here - **LONG**

I stayed away from the stimulants with my son. We use Strattera and it has been.

God-send! He was acting just like your son and taking him off allergenic foods

plus Strattera helped immensely! Maybe ask for Strattera instead of Concerta?

Rhonda Masengale

On Feb 5, 2011, at 6:30 AM, " Donna G " <gander627@...> wrote:

> Hi, I am new here and greatly interested in your group. Let me fill you in on

>us. My husband and I have a beautiful 7 year old boy, Donovan, who has severe

>ADHD. I had been following , with a bit of resentment, conventional medicine. I

>am a nurse practitioner (adult acute care) and in my soul I knew this was not

>the answer on its own. I took a leap of faith after doing much reading and went

>to see a Holistic MD Pediatrician, and switched his medication

dosing/management

>

>

>to a wonderful neurologist who specializes in ADHD and who HAS ADHD himself

>(there's someone you dont find every day - he can EMPATHIZE with my son

easily).

>

>

>I had bad experiences when trying to allow a psychiatrist do his meds - he

>wanted to put him on things like Risperdal and such....uhhh NO WAY !

>

> Anyway the holistic pediatrician tested him for food allergies, (igG) and did

>stool, urine testing, a myriad of blood tests. Findings show gluten

>intolerance(high Gliadan antibody) and casein intolerance (casein peptide in

the

>

>

>urine) stool showed much bowel inflammation but not signif yeast and no

>parasites. His thyroid was stressed, his Vit D level very low. He showed

>positive for a genetic problem with folate metabolism.

>

>

> She put him on a new diet. He is on a gluten and casein free diet. We elimated

>ALL processed foods. All preservatives and dyes. We eat organic only and mostly

>fresh. We get grass fed beef and organic poulty from a local farm now. His

>behavior and allergy symptoms improved 100%. She placed him on high dose fish

>oil, and a dopamine uptake supplement called Lumina by Metagenics. He has a

>genetic deficiency in Folate metabolism and she put him on Fola-Pro by

>Metagenics to help methylation. He is on HMF Neuro probiotics twice daily. He

>takes 6, 000 units of Vit D daily. He was on Ritalin XR 40 mg daily at this

>time, he developed a severe eye motor tic. I held my ground with neurologist

and

>

>

>weaned that Ritalin down to about 15 mg daily...The tic RESOLVED ...and Donovan

>did fine in school, still talked a bit too much but generally his behavior was

>acceptable and actually showed improvement. Fast forward to now.

>

>

> Since return to school after Christmas break, he has done a 360 on behavior.

He

>

>

>is easily irritated, talks incessantly, doesnt follow direction without

repeated

>

>

>coaching, gets up in class, interrupts class, argues with adults, etc AND has

>actually hit people once last week and once this week. Interestingly, his

>allergy symptoms (sneezing, congestion, bed wetting are all reappearing) We are

>certain he is not getting gluten anywhere.

>

>

> Thank GOD his teacher and principal are amazingly patient, working with him

but

>

>

>they are getting a bit frustrated. I communicate constantly with them so they

do

>

>

>know we are trying to get him back to where he was. At first we all thought it

>was the break that caused a lack of routine or structure but its been a month

>and he is well into the school routine.

>

>

> I took him back to neurologist. He says it shows the Ritalin just isnt working

>for him anymore at 15 mg. I said well we cannot crank up the Ritalin dose

again,

>

>

>the eye tic will come back (Donovans tic was his eyes ROLLED up leftward about

2

>

>

>times a min) We decided lets try a longer acting but slower to peak and slower

>to disappate rx like Concerta. First week on Concerta 18 mg and not so

good...he

>

>

>hit at a teacher and a girl this week. If he continues to hit people they will

>suspend him or expell him. We moved to this town in July 2010 JUST to get him

>into this excellent school district. Neurologist increased Concerta to 27 mg

>daily yesterday.

>

>

> Ok I am at my wits end. Going to get a hold of holistic pediatrician today but

>any suggestions ?? What is diet ? donovan was on a modified GAPS diet for

a

>

>

>while but is now just as I mentioned above.

>

>

> I think my son needs the Concerta right now so be it. I dont like him on

>stimulants but getting expelled is NOT an option. I work full time and make the

>money, my husband makes less than $20,000/year so I cannot stay home. I work

for

>

>

>a wonderful MD who lets me take off when I need to get him to appointments and

>my hubs does the rest. My husband is usually home when Donovan gets off school.

>Donovan goes to a daycare latchkey. The school latchkey kicked him out 2 weeks

>ago for this horrid behavior.

>

>

> My goal is to get to the bottom of this big change in him. I appreciate every

>one who has read this far and all your suggestions !!

>

> Donna Gilliam, mom to Donovan age 7

>

>

[Guest guest]

It sounds like your son has PANDAS due to a strep exposure. Yo can learn more

about strep at www.pandasresourcenetwork.org  There is also a pandas_autism

group that you may want to join.  A standard protocol for treating PANDAS

is a trial of Azithromycin antibiotic. PANDAS causes aggression, separation

anxiety, deterioration of handwriting and math skills, tics, OCD to name a few

things. It also comes on quickly like a switch is flicked.

 

From: Donna G <gander627@...>

Subject: Hello New Here - **LONG**

Date: Saturday, February 5, 2011, 7:30 AM

 

Hi, I am new here and greatly interested in your group. Let me fill you in on

us. My husband and I have a beautiful 7 year old boy, Donovan, who has severe

ADHD. I had been following , with a bit of resentment, conventional medicine. I

am a nurse practitioner (adult acute care) and in my soul I knew this was not

the answer on its own. I took a leap of faith after doing much reading and went

to see a Holistic MD Pediatrician, and switched his medication dosing/management

to a wonderful neurologist who specializes in ADHD and who HAS ADHD himself

(there's someone you dont find every day - he can EMPATHIZE with my son easily).

I had bad experiences when trying to allow a psychiatrist do his meds - he

wanted to put him on things like Risperdal and such....uhhh NO WAY !

Anyway the holistic pediatrician tested him for food allergies, (igG) and did

stool, urine testing, a myriad of blood tests. Findings show gluten

intolerance(high Gliadan antibody) and casein intolerance (casein peptide in the

urine) stool showed much bowel inflammation but not signif yeast and no

parasites. His thyroid was stressed, his Vit D level very low. He showed

positive for a genetic problem with folate metabolism.

She put him on a new diet. He is on a gluten and casein free diet. We elimated

ALL processed foods. All preservatives and dyes. We eat organic only and mostly

fresh. We get grass fed beef and organic poulty from a local farm now. His

behavior and allergy symptoms improved 100%. She placed him on high dose fish

oil, and a dopamine uptake supplement called Lumina by Metagenics. He has a

genetic deficiency in Folate metabolism and she put him on Fola-Pro by

Metagenics to help methylation. He is on HMF Neuro probiotics twice daily. He

takes 6, 000 units of Vit D daily. He was on Ritalin XR 40 mg daily at this

time, he developed a severe eye motor tic. I held my ground with neurologist and

weaned that Ritalin down to about 15 mg daily...The tic RESOLVED ...and Donovan

did fine in school, still talked a bit too much but generally his behavior was

acceptable and actually showed improvement. Fast forward to now.

Since return to school after Christmas break, he has done a 360 on behavior. He

is easily irritated, talks incessantly, doesnt follow direction without repeated

coaching, gets up in class, interrupts class, argues with adults, etc AND has

actually hit people once last week and once this week. Interestingly, his

allergy symptoms (sneezing, congestion, bed wetting are all reappearing) We are

certain he is not getting gluten anywhere.

Thank GOD his teacher and principal are amazingly patient, working with him but

they are getting a bit frustrated. I communicate constantly with them so they do

know we are trying to get him back to where he was. At first we all thought it

was the break that caused a lack of routine or structure but its been a month

and he is well into the school routine.

I took him back to neurologist. He says it shows the Ritalin just isnt working

for him anymore at 15 mg. I said well we cannot crank up the Ritalin dose again,

the eye tic will come back (Donovans tic was his eyes ROLLED up leftward about 2

times a min) We decided lets try a longer acting but slower to peak and slower

to disappate rx like Concerta. First week on Concerta 18 mg and not so good...he

hit at a teacher and a girl this week. If he continues to hit people they will

suspend him or expell him. We moved to this town in July 2010 JUST to get him

into this excellent school district. Neurologist increased Concerta to 27 mg

daily yesterday.

Ok I am at my wits end. Going to get a hold of holistic pediatrician today but

any suggestions ?? What is diet ? donovan was on a modified GAPS diet for a

while but is now just as I mentioned above.

I think my son needs the Concerta right now so be it. I dont like him on

stimulants but getting expelled is NOT an option. I work full time and make the

money, my husband makes less than $20,000/year so I cannot stay home. I work for

a wonderful MD who lets me take off when I need to get him to appointments and

my hubs does the rest. My husband is usually home when Donovan gets off school.

Donovan goes to a daycare latchkey. The school latchkey kicked him out 2 weeks

ago for this horrid behavior.

My goal is to get to the bottom of this big change in him. I appreciate every

one who has read this far and all your suggestions !!

Donna Gilliam, mom to Donovan age 7

[Guest guest]

,

well I hear you about the soy but nope nadda no soy in the diet for the most

part because I know how toxic it is to the thyroid and my son's TSH was over

3.00 on the first check. The doc told us no soy and she says the goal for his

TSH is < 1.50 We have had some soy yogurt but its a rare thing. We never ever

touch soy milk.

the diet sounds a lot like what I think we need to move to, although I had

not heard of it from our doc yet. I am going to mention it to her asap. I feel

my son eats way too much grain as it is....albeit gluten free grains. I also

went to a new holistic integrative medicine MD and told her all about my life

long allergy, asthma, immune problems and immune diseases on my mother's side of

family and she told me that likely I and my son need to go nearly grain free, at

least for a while. She is testing me now for IgG food allergies.

anyway...yes it feels like we are back to the drawing board with him and

something allergic or inflammatory is going on ...i just know it and its little

things I notice.

Who is Dr. Goldberg and does he have publications I can refer to ?

thanks so much everyone !!!

Donna

>

> Hi,

> I would bet that his diet is heavy in soy proteins...  For us, that is a huge

> huge problem.  When I hear of aggression and especially oppositional behavior

or

> irritability, I instantly think soy. Especially soy lecithen.  It takes a

couple

> of weeks or more for symptoms to start, but once you pull it away it takes

> almost exactly 5 days to get out of the system.  Then, if it is soy related

mood

> changes, day 6 they just seem a lot less angry and frustrated and unhappy. 

The

> habit of the behaviors hangs around longer, and a residual anger at you and

> himself, but you can tell within the first week, and the kid can tell by the

> second week, that life just isn't nearly as .... difficult (or a living hell

to

> be more precise).

>

> The other problem I see (coming from a PANDAS point of view and experience) is

> the probiotics.  I would really suggest (in the presence of a tic even if it

is

> stimulant related), and the incessant chatter, that you consider switching to

a

> single strain like kyodophilus for at least a month and see if that has any

> benefit.  Several strains of probiotics can really exacerbate OCD and ADD

type

> behaviors - rather make the brain constantly 'flicker', because they stimulate

> different parts of the immune system (typically good for typical people, bad

for

> someone if both arms of the immune system are over-activated), and my

experience

> w/ 2 kids who combined sound a lot like yours is that they do not do well on

> probiotics, no matter how much I have believed in them.  I also have CFS and

a

> PANDAS-like problem w/strep, and I cannot take probiotics in any form.  We

just

> have to use the antifungals. 

>

>

> The diet is a very low-allergy diet w/no dairy and no whole grains, with

> limits on other things as well.  It's high protein low carb very limited

sugar,

> no allergenic foods like berries, nuts, and tropical fruits.  The rest varies

> per kid.  GFCF diet very often ends up in the long run making things worse,

> because the focus is trying to get maximum nutrition with other whole grains

and

> nutrient-dense foods.  When you first go GFCF, you often see a big

improvement -

> it can be for many, though, the simple removal of dairy itself.  Then,

though,

> steady intake of all the allergenic replacement foods starts setting off the

> immune system 6 different ways and ends up doing more harm than good.  Even

if a

> kid eats only 3 foods a day, if they take a standard multivitamin, they may

> still do better than some on a high nutrient GFCF diet.  ly, if an

immune

> system is very activated, it is very likely that no matter how much nutrition

> you pump into a kid, it's unlikely that the body is absorbing it

> properly.  Immune activation can halt absorption of a lot of vitamins and

> minerals in it's tracks, and in some cases, it's actually a protective

mechanism

> in the fight against certain viruses and bacteria.  Like chronic anemia -

> sometimes no matter how much iron you give (I certainly know about this one),

> your body simply will NOT absorb it if you have a chronic strep infection - it

> will transfer it somewhere else and store it.    So while GFCF originated

on the

> paradigm that particles in gluten and casein were somehow crossing the blood

> brain barrier and causing intoxication, the paradigm is that immune

> activation is the cause of the cognitive problems (inflammation in the tiny

> blood vessels in the brain for instance, restricting blood flow to the

temporal

> and frontal lobes - known areas for the dysfunction in autism and similar or

> identical to that found in CFS).  This immune activation, which was

hypothesized

> many years back, was proven in the study published out of Jons Hopkins a few

> years back...

>

>

> It's very common for gliadin to be high in , but it does not literally

point

> to an intolerance for all gluten.  Most kids can still tolerate highly

processed

> wheat in their diets, despite elevated gliadin levels.  Many of us have seen

> that marker go way down on the protocol despite wheat (highly

> refined/processed) in the diet.  It used to be definted in the 50s (? I

think,

> or 60s) as a marker for inflammation in the bowel.  I know that's contrary to

> what DAN! and holistic doctors say, but that's our experience.  We all do

remain

> off cow's dairy, but not all casein together - for most (not all) goats and

> sheep products are still ok (hello manchego cheese, romano cheese, goat

cheese,

> feta - yum!).  Cow's milk is known to increase cytokines that are

inflammatory

> (ok for a normal healthy body, baaaad for ).  Cytokines ARE known to

cross

> the blood brain barrier and be very active in the brain, whereas they still

> haven't actually proved that casein particles do.  It's similar findings,

> different paradigms as to what the labs mean and how to address it.  I

> personally like the way better - way easier, cheaper, tastier, and my kid

> did much better than when we were GFCF.  I was always a high-nutrient whole

> grain berry nut fruit eating, no processed foods no preservatives whole foods

> health food store kind of girl... and I was never sicker or in more pain all

> over my body than then.  Believe me, I love those foods - they taste far

better

> to me, but when I stopped and went to plain old white bread (well sourdough is

> actually quite yum), my constant pain went away, and most of my autonomic

> problems, and probably half of the fatigue.  My brain worked better too.  I

> never understood that until I discovered Dr Goldberg.  It never made sense to

> me.  We're supposed to eat whole grains!  And nuts!  And all those foods

rich in

> amino acids and fatty acids and vitamins etc etc etc.  So why did that very

> healthy diet make me so freakin sick?  Anyway, I just went in to all that

> because it can be very hard for someone to switch from one paradigm to another

> when it comes to diet - it was for me - but we see time and time again

> improvements after the switch, even when we swore GFCF was the only way our

kids

> made any improvement in the beginning.

>

> HTH

>

>

>

>

> ________________________________

>

[Guest guest]

We only drink almond, rice or coconut milk. All are calcium fortified.

Donna

>

> Interesting the point about Soy Protein. What milk do you use as a substitute?

>

>

>

[Guest guest]

I have read about PANDAs in Dr. Bock's book. I don't recall if

Donovan was every actually diagnosed with a strep infection. He was not sick a

lot as a small child but did have two horrible episodes of high fever and resp

infection at age 18 months and age 6 years. I thought PANDAs was more a

consistent pattern of aggression....he has not had this. He has some OCD

tendencies, he gets fixated on certain toys (pokemon, bey blades) and

constantly picks his fingers or teeth or makes repetitive noises.

Donna

>

> It sounds like your son has PANDAS due to a strep exposure. Yo can learn more

about strep at www.pandasresourcenetwork.org  There is also a pandas_autism

group that you may want to join.  A standard protocol for treating PANDAS

is a trial of Azithromycin antibiotic. PANDAS causes aggression, separation

anxiety, deterioration of handwriting and math skills, tics, OCD to name a few

things. It also comes on quickly like a switch is flicked.

>  

>

>

>

[Guest guest]

>

> > Hi, I am new here and greatly interested in your group. Let me fill you in

on

> >us. My husband and I have a beautiful 7 year old boy, Donovan, who has severe

> >ADHD. I had been following , with a bit of resentment, conventional medicine.

I

>

>

> >am a nurse practitioner (adult acute care) and in my soul I knew this was not

> >the answer on its own. I took a leap of faith after doing much reading and

went

>

>

> >to see a Holistic MD Pediatrician, and switched his medication

dosing/management

> >

> >

> >to a wonderful neurologist who specializes in ADHD and who HAS ADHD himself

> >(there's someone you dont find every day - he can EMPATHIZE with my son

easily).

> >

> >

> >I had bad experiences when trying to allow a psychiatrist do his meds - he

> >wanted to put him on things like Risperdal and such....uhhh NO WAY !

> >

> > Anyway the holistic pediatrician tested him for food allergies, (igG) and

did

> >stool, urine testing, a myriad of blood tests. Findings show gluten

> >intolerance(high Gliadan antibody) and casein intolerance (casein peptide in

the

> >

> >

> >urine) stool showed much bowel inflammation but not signif yeast and no

> >parasites. His thyroid was stressed, his Vit D level very low. He showed

> >positive for a genetic problem with folate metabolism.

> >

> >

> > She put him on a new diet. He is on a gluten and casein free diet. We

elimated

>

>

> >ALL processed foods. All preservatives and dyes. We eat organic only and

mostly

>

>

> >fresh. We get grass fed beef and organic poulty from a local farm now. His

> >behavior and allergy symptoms improved 100%. She placed him on high dose fish

> >oil, and a dopamine uptake supplement called Lumina by Metagenics. He has a

> >genetic deficiency in Folate metabolism and she put him on Fola-Pro by

> >Metagenics to help methylation. He is on HMF Neuro probiotics twice daily. He

> >takes 6, 000 units of Vit D daily. He was on Ritalin XR 40 mg daily at this

> >time, he developed a severe eye motor tic. I held my ground with neurologist

and

> >

> >

> >weaned that Ritalin down to about 15 mg daily...The tic RESOLVED ...and

Donovan

>

>

> >did fine in school, still talked a bit too much but generally his behavior

was

> >acceptable and actually showed improvement. Fast forward to now.

> >

> >

> > Since return to school after Christmas break, he has done a 360 on behavior.

He

> >

> >

> >is easily irritated, talks incessantly, doesnt follow direction without

repeated

> >

> >

> >coaching, gets up in class, interrupts class, argues with adults, etc AND has

> >actually hit people once last week and once this week. Interestingly, his

> >allergy symptoms (sneezing, congestion, bed wetting are all reappearing) We

are

>

>

> >certain he is not getting gluten anywhere.

> >

> >

> > Thank GOD his teacher and principal are amazingly patient, working with him

but

> >

> >

> >they are getting a bit frustrated. I communicate constantly with them so they

do

> >

> >

> >know we are trying to get him back to where he was. At first we all thought

it

> >was the break that caused a lack of routine or structure but its been a month

> >and he is well into the school routine.

> >

> >

> > I took him back to neurologist. He says it shows the Ritalin just isnt

working

>

>

> >for him anymore at 15 mg. I said well we cannot crank up the Ritalin dose

again,

> >

> >

> >the eye tic will come back (Donovans tic was his eyes ROLLED up leftward

about 2

> >

> >

> >times a min) We decided lets try a longer acting but slower to peak and

slower

> >to disappate rx like Concerta. First week on Concerta 18 mg and not so

good...he

> >

> >

> >hit at a teacher and a girl this week. If he continues to hit people they

will

> >suspend him or expell him. We moved to this town in July 2010 JUST to get him

> >into this excellent school district. Neurologist increased Concerta to 27 mg

> >daily yesterday.

> >

> >

> > Ok I am at my wits end. Going to get a hold of holistic pediatrician today

but

>

>

> >any suggestions ?? What is diet ? donovan was on a modified GAPS diet

for a

> >

> >

> >while but is now just as I mentioned above.

> >

> >

> > I think my son needs the Concerta right now so be it. I dont like him on

> >stimulants but getting expelled is NOT an option. I work full time and make

the

>

>

> >money, my husband makes less than $20,000/year so I cannot stay home. I work

for

> >

> >

> >a wonderful MD who lets me take off when I need to get him to appointments

and

> >my hubs does the rest. My husband is usually home when Donovan gets off

school.

>

>

> >Donovan goes to a daycare latchkey. The school latchkey kicked him out 2

weeks

> >ago for this horrid behavior.

> >

> >

> > My goal is to get to the bottom of this big change in him. I appreciate

every

> >one who has read this far and all your suggestions !!

> >

> > Donna Gilliam, mom to Donovan age 7

> >

> >

>

>

[Guest guest]

Hey Carole,

It's so hard to say.  My son's sensitivity to sound has gotten just a little

better since pulling out the soy lecithen but not a whole lot.   The main

symptoms that make me suggest pulling soy is aggression and oppositional

behavior.  With ocd, I suspect chronic bacterial before diet.  Sometimes it

takes a long time for that to cool down too, even if you treat with long term

antibiotics. 

But diet is always a possibility, and soy is a problem for one of my kids for

sure, but the other child doesn't seem to be bothered by it.  I haven't,

however, pulled it completely from his diet (lol they both eat totally different

things most of the time - oh such fun this life is considering that I would be

a

very food-challenged person - and the few things they do both eat don't have

any

suspects). 

Soy is a slow trigger, though, so pulling it out completely, you wouldn't see

much for a minimum of 5 days, but adding it back in, it takes weeks (for us)

for

the chaos to get so bad that we even realize that a trigger has happened.  It's

not until I'm pulling my hair out wondering why this kid is so mean that it hits

me.   But again, it's only the anger, aggression, and opposition that really

stands out to me.  So since diet is so hard, I don't know if I'd undergo a

total

change just to see.  *I* wouldn't.   But it's always a good idea to cycle

diet

enough to have days where you don't have a particular item, like the

occasional

few days of corn-free, then a few days of low wheat, and so on.  Much easier

said than done.  In our house, the kids get on a particular food and that's

all

they want for a long period, then one day they up and don't like it anymore

and

we scramble to find a replacement, and then whatever gets accepted (eaten)

becomes the new " main " meal for the next couple of months.  It's nuts.  I wish

I

could change that.  I can't tell if that's MY behavior pattern, or theirs, or

both.  No, it's definitely my oldest son's pattern.  (Not my fault!)

HTH

 

 

 

 

 

Love reading your post so informative explains all we need to know about this. I

am thinking my grandson should stop eating soy. My daughter took away soy once

then went back to same diet again she said he didn`t have any change, He

continues to have a lot of OCD, scripting,auditory problems. Would auditory

problems be added as well? He can not tolerate any loud noise allways covering

ears then getting very upset. Everything has soy, soy protein in it all what he

eats.

Thanks

Carole

[Guest guest]

Carole, I can help with the soy substitution ideas if you need some.  Or any

dietary substitutions.  We have lots of intolerances in my house!

-Jen

From: chocolatiluv <chocolatiluv@...>

Subject: Re: Hello New Here - **LONG**

Date: Sunday, February 6, 2011, 11:36 AM

 

>

> > Hi, I am new here and greatly interested in your group. Let me fill you in

on

> >us. My husband and I have a beautiful 7 year old boy, Donovan, who has severe

> >ADHD. I had been following , with a bit of resentment, conventional medicine.

I

>

>

> >am a nurse practitioner (adult acute care) and in my soul I knew this was not

> >the answer on its own. I took a leap of faith after doing much reading and

went

>

>

> >to see a Holistic MD Pediatrician, and switched his medication

dosing/management

> >

> >

> >to a wonderful neurologist who specializes in ADHD and who HAS ADHD himself

> >(there's someone you dont find every day - he can EMPATHIZE with my son

easily).

> >

> >

> >I had bad experiences when trying to allow a psychiatrist do his meds - he

> >wanted to put him on things like Risperdal and such....uhhh NO WAY !

> >

> > Anyway the holistic pediatrician tested him for food allergies, (igG) and

did

> >stool, urine testing, a myriad of blood tests. Findings show gluten

> >intolerance(high Gliadan antibody) and casein intolerance (casein peptide in

the

> >

> >

> >urine) stool showed much bowel inflammation but not signif yeast and no

> >parasites. His thyroid was stressed, his Vit D level very low. He showed

> >positive for a genetic problem with folate metabolism.

> >

> >

> > She put him on a new diet. He is on a gluten and casein free diet. We

elimated

>

>

> >ALL processed foods. All preservatives and dyes. We eat organic only and

mostly

>

>

> >fresh. We get grass fed beef and organic poulty from a local farm now. His

> >behavior and allergy symptoms improved 100%. She placed him on high dose fish

> >oil, and a dopamine uptake supplement called Lumina by Metagenics. He has a

> >genetic deficiency in Folate metabolism and she put him on Fola-Pro by

> >Metagenics to help methylation. He is on HMF Neuro probiotics twice daily. He

> >takes 6, 000 units of Vit D daily. He was on Ritalin XR 40 mg daily at this

> >time, he developed a severe eye motor tic. I held my ground with neurologist

and

> >

> >

> >weaned that Ritalin down to about 15 mg daily...The tic RESOLVED ...and

Donovan

>

>

> >did fine in school, still talked a bit too much but generally his behavior

was

> >acceptable and actually showed improvement. Fast forward to now.

> >

> >

> > Since return to school after Christmas break, he has done a 360 on behavior.

He

> >

> >

> >is easily irritated, talks incessantly, doesnt follow direction without

repeated

> >

> >

> >coaching, gets up in class, interrupts class, argues with adults, etc AND has

> >actually hit people once last week and once this week. Interestingly, his

> >allergy symptoms (sneezing, congestion, bed wetting are all reappearing) We

are

>

>

> >certain he is not getting gluten anywhere.

> >

> >

> > Thank GOD his teacher and principal are amazingly patient, working with him

but

> >

> >

> >they are getting a bit frustrated. I communicate constantly with them so they

do

> >

> >

> >know we are trying to get him back to where he was. At first we all thought

it

> >was the break that caused a lack of routine or structure but its been a month

> >and he is well into the school routine.

> >

> >

> > I took him back to neurologist. He says it shows the Ritalin just isnt

working

>

>

> >for him anymore at 15 mg. I said well we cannot crank up the Ritalin dose

again,

> >

> >

> >the eye tic will come back (Donovans tic was his eyes ROLLED up leftward

about 2

> >

> >

> >times a min) We decided lets try a longer acting but slower to peak and

slower

> >to disappate rx like Concerta. First week on Concerta 18 mg and not so

good...he

> >

> >

> >hit at a teacher and a girl this week. If he continues to hit people they

will

> >suspend him or expell him. We moved to this town in July 2010 JUST to get him

> >into this excellent school district. Neurologist increased Concerta to 27 mg

> >daily yesterday.

> >

> >

> > Ok I am at my wits end. Going to get a hold of holistic pediatrician today

but

>

>

> >any suggestions ?? What is diet ? donovan was on a modified GAPS diet

for a

> >

> >

> >while but is now just as I mentioned above.

> >

> >

> > I think my son needs the Concerta right now so be it. I dont like him on

> >stimulants but getting expelled is NOT an option. I work full time and make

the

>

>

> >money, my husband makes less than $20,000/year so I cannot stay home. I work

for

> >

> >

> >a wonderful MD who lets me take off when I need to get him to appointments

and

> >my hubs does the rest. My husband is usually home when Donovan gets off

school.

>

>

> >Donovan goes to a daycare latchkey. The school latchkey kicked him out 2

weeks

> >ago for this horrid behavior.

> >

> >

> > My goal is to get to the bottom of this big change in him. I appreciate

every

> >one who has read this far and all your suggestions !!

> >

> > Donna Gilliam, mom to Donovan age 7

> >

> >

>

>

[Guest guest]

> >

> > > Hi, I am new here and greatly interested in your group. Let me fill you in

on

> > >us. My husband and I have a beautiful 7 year old boy, Donovan, who has

severe

> > >ADHD. I had been following , with a bit of resentment, conventional

medicine. I

> >

> >

> > >am a nurse practitioner (adult acute care) and in my soul I knew this was

not

> > >the answer on its own. I took a leap of faith after doing much reading and

went

> >

> >

> > >to see a Holistic MD Pediatrician, and switched his medication

dosing/management

> > >

> > >

> > >to a wonderful neurologist who specializes in ADHD and who HAS ADHD himself

> > >(there's someone you dont find every day - he can EMPATHIZE with my son

easily).

> > >

> > >

> > >I had bad experiences when trying to allow a psychiatrist do his meds - he

> > >wanted to put him on things like Risperdal and such....uhhh NO WAY !

> > >

> > > Anyway the holistic pediatrician tested him for food allergies, (igG) and

did

> > >stool, urine testing, a myriad of blood tests. Findings show gluten

> > >intolerance(high Gliadan antibody) and casein intolerance (casein peptide

in the

> > >

> > >

> > >urine) stool showed much bowel inflammation but not signif yeast and no

> > >parasites. His thyroid was stressed, his Vit D level very low. He showed

> > >positive for a genetic problem with folate metabolism.

> > >

> > >

> > > She put him on a new diet. He is on a gluten and casein free diet. We

elimated

> >

> >

> > >ALL processed foods. All preservatives and dyes. We eat organic only and

mostly

> >

> >

> > >fresh. We get grass fed beef and organic poulty from a local farm now. His

> > >behavior and allergy symptoms improved 100%. She placed him on high dose

fish

> > >oil, and a dopamine uptake supplement called Lumina by Metagenics. He has a

> > >genetic deficiency in Folate metabolism and she put him on Fola-Pro by

> > >Metagenics to help methylation. He is on HMF Neuro probiotics twice daily.

He

> > >takes 6, 000 units of Vit D daily. He was on Ritalin XR 40 mg daily at this

> > >time, he developed a severe eye motor tic. I held my ground with

neurologist and

> > >

> > >

> > >weaned that Ritalin down to about 15 mg daily...The tic RESOLVED ...and

Donovan

> >

> >

> > >did fine in school, still talked a bit too much but generally his behavior

was

> > >acceptable and actually showed improvement. Fast forward to now.

> > >

> > >

> > > Since return to school after Christmas break, he has done a 360 on

behavior. He

> > >

> > >

> > >is easily irritated, talks incessantly, doesnt follow direction without

repeated

> > >

> > >

> > >coaching, gets up in class, interrupts class, argues with adults, etc AND

has

> > >actually hit people once last week and once this week. Interestingly, his

> > >allergy symptoms (sneezing, congestion, bed wetting are all reappearing) We

are

> >

> >

> > >certain he is not getting gluten anywhere.

> > >

> > >

> > > Thank GOD his teacher and principal are amazingly patient, working with

him but

> > >

> > >

> > >they are getting a bit frustrated. I communicate constantly with them so

they do

> > >

> > >

> > >know we are trying to get him back to where he was. At first we all thought

it

> > >was the break that caused a lack of routine or structure but its been a

month

> > >and he is well into the school routine.

> > >

> > >

> > > I took him back to neurologist. He says it shows the Ritalin just isnt

working

> >

> >

> > >for him anymore at 15 mg. I said well we cannot crank up the Ritalin dose

again,

> > >

> > >

> > >the eye tic will come back (Donovans tic was his eyes ROLLED up leftward

about 2

> > >

> > >

> > >times a min) We decided lets try a longer acting but slower to peak and

slower

> > >to disappate rx like Concerta. First week on Concerta 18 mg and not so

good...he

> > >

> > >

> > >hit at a teacher and a girl this week. If he continues to hit people they

will

> > >suspend him or expell him. We moved to this town in July 2010 JUST to get

him

> > >into this excellent school district. Neurologist increased Concerta to 27

mg

> > >daily yesterday.

> > >

> > >

> > > Ok I am at my wits end. Going to get a hold of holistic pediatrician today

but

> >

> >

> > >any suggestions ?? What is diet ? donovan was on a modified GAPS diet

for a

> > >

> > >

> > >while but is now just as I mentioned above.

> > >

> > >

> > > I think my son needs the Concerta right now so be it. I dont like him on

> > >stimulants but getting expelled is NOT an option. I work full time and make

the

> >

> >

> > >money, my husband makes less than $20,000/year so I cannot stay home. I

work for

> > >

> > >

> > >a wonderful MD who lets me take off when I need to get him to appointments

and

> > >my hubs does the rest. My husband is usually home when Donovan gets off

school.

> >

> >

> > >Donovan goes to a daycare latchkey. The school latchkey kicked him out 2

weeks

> > >ago for this horrid behavior.

> > >

> > >

> > > My goal is to get to the bottom of this big change in him. I appreciate

every

> > >one who has read this far and all your suggestions !!

> > >

> > > Donna Gilliam, mom to Donovan age 7

> > >

> > >

> >

> >

[Guest guest]

> >

> > Interesting the point about Soy Protein. What milk do you use as a

substitute?

> >

> >

> >

>

Donna

I thought Dr. G says no coconut or nuts & rice has whole grains in these

milks.Let me know if I am wrong. Hopefully this site could update the whole diet

protocol that would be great for these parents.

Thanks

Carole

[Guest guest]

Is Dr. G good with coconut milk? I noticed that our grocery store is carrying it

and would like to try it

Robyn

From: chocolatiluv <chocolatiluv@...>

Subject: Re: Hello New Here - **LONG**

Date: Sunday, February 6, 2011, 5:24 PM

 

> >

> > Interesting the point about Soy Protein. What milk do you use as a

substitute?

> >

> >

> >

>

Donna

I thought Dr. G says no coconut or nuts & rice has whole grains in these

milks.Let me know if I am wrong. Hopefully this site could update the whole diet

protocol that would be great for these parents.

Thanks

Carole

[Guest guest]

When I asked if my son should drink coconut milk, Dr. G. said, " if it's

something thing he grows up with " . So I didn't start my son with coconut milk

as he doesn't grow up with it and it contains sugar.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Sun, February 6, 2011 5:30:51 PM

Subject: Re: Re: Hello New Here - **LONG**

Is Dr. G good with coconut milk? I noticed that our grocery store is carrying it

and would like to try it

Robyn

From: chocolatiluv <chocolatiluv@...>

Subject: Re: Hello New Here - **LONG**

Date: Sunday, February 6, 2011, 5:24 PM

> >

> > Interesting the point about Soy Protein. What milk do you use as a

>substitute?

> >

> >

> >

>

Donna

I thought Dr. G says no coconut or nuts & rice has whole grains in these

milks.Let me know if I am wrong. Hopefully this site could update the whole diet

protocol that would be great for these parents.

Thanks

Carole

[Guest guest]

Huh?  I don't understand Dr G's comment....

I did try coconut milk.  I also did coconut oil.  I'd get a burst of energy

(nice if you have CFS) and be able to clean my house and cook dinner.  I even

lost weight like very suddenly - both times I did it.  But after a couple of

weeks, I started to feel wierd, and it went away after I stopped the oil. Came

back again a couple weeks after the next time I tried it.  I really miss being

able to choke down a tablespoon of that nasty stuff and then feel it kick in in

the next hour, but ultimately it turned out to make me feel worse...

I never figured out why it bothered me, but something I read said it was high in

something that (while usually good) turns out to feed a virus - can't remember

but probably HHV6.

________________________________

From: Lucy Town <lucy1628@...>

Sent: Sun, February 6, 2011 7:37:32 PM

Subject: Re: Re: Hello New Here - **LONG**

 

When I asked if my son should drink coconut milk, Dr. G. said, " if it's

something thing he grows up with " . So I didn't start my son with coconut milk

as he doesn't grow up with it and it contains sugar.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Sun, February 6, 2011 5:30:51 PM

Subject: Re: Re: Hello New Here - **LONG**

Is Dr. G good with coconut milk? I noticed that our grocery store is carrying it

and would like to try it

Robyn

From: chocolatiluv <chocolatiluv@...>

Subject: Re: Hello New Here - **LONG**

Date: Sunday, February 6, 2011, 5:24 PM

> >

> > Interesting the point about Soy Protein. What milk do you use as a

>substitute?

> >

> >

> >

>

Donna

I thought Dr. G says no coconut or nuts & rice has whole grains in these

milks.Let me know if I am wrong. Hopefully this site could update the whole diet

protocol that would be great for these parents.

Thanks

Carole

[Guest guest]

Rice krispies are acceptable... and they're fun dry too.  It's just great to

eat

something that sticks to your tongue and makes noises lol.  You can eat them in

the car.  Is there anything more perfect than that?  Of course, there's

nothing

of substance to them ...

How about bacon?  A couple strip of that choked down will last till lunch...

Now my son just dropped all his breakfast choices (like grits, cereal) and wants

meatballs and rice or cold hamburger for breakfast.  He wanted macaroni, but I

draw the line there...

If Bill hadn't already said they do dinners for breakfast too, I might have

freaked out about it.  I mean - it's breakfast!  How do you eat in the morning

period?  It's just wierd. 

________________________________

From: chocolatiluv <chocolatiluv@...>

Sent: Sun, February 6, 2011 4:45:12 PM

Subject: Re: Hello New Here - **LONG**

 

> >

> > > Hi, I am new here and greatly interested in your group. Let me fill you in

>on

>

> > >us. My husband and I have a beautiful 7 year old boy, Donovan, who has

>severe

>

> > >ADHD. I had been following , with a bit of resentment, conventional

>medicine. I

>

> >

> >

> > >am a nurse practitioner (adult acute care) and in my soul I knew this was

>not

>

> > >the answer on its own. I took a leap of faith after doing much reading and

>went

>

> >

> >

> > >to see a Holistic MD Pediatrician, and switched his medication

>dosing/management

>

> > >

> > >

> > >to a wonderful neurologist who specializes in ADHD and who HAS ADHD himself

> > >(there's someone you dont find every day - he can EMPATHIZE with my son

>easily).

>

> > >

> > >

> > >I had bad experiences when trying to allow a psychiatrist do his meds - he

> > >wanted to put him on things like Risperdal and such....uhhh NO WAY !

> > >

> > > Anyway the holistic pediatrician tested him for food allergies, (igG) and

>did

>

> > >stool, urine testing, a myriad of blood tests. Findings show gluten

> > >intolerance(high Gliadan antibody) and casein intolerance (casein peptide

in

>the

>

> > >

> > >

> > >urine) stool showed much bowel inflammation but not signif yeast and no

> > >parasites. His thyroid was stressed, his Vit D level very low. He showed

> > >positive for a genetic problem with folate metabolism.

> > >

> > >

> > > She put him on a new diet. He is on a gluten and casein free diet. We

>elimated

>

> >

> >

> > >ALL processed foods. All preservatives and dyes. We eat organic only and

>mostly

>

> >

> >

> > >fresh. We get grass fed beef and organic poulty from a local farm now. His

> > >behavior and allergy symptoms improved 100%. She placed him on high dose

>fish

>

> > >oil, and a dopamine uptake supplement called Lumina by Metagenics. He has a

> > >genetic deficiency in Folate metabolism and she put him on Fola-Pro by

> > >Metagenics to help methylation. He is on HMF Neuro probiotics twice daily.

>He

>

> > >takes 6, 000 units of Vit D daily. He was on Ritalin XR 40 mg daily at this

> > >time, he developed a severe eye motor tic. I held my ground with

neurologist

>and

>

> > >

> > >

> > >weaned that Ritalin down to about 15 mg daily...The tic RESOLVED ...and

>Donovan

>

> >

> >

> > >did fine in school, still talked a bit too much but generally his behavior

>was

>

> > >acceptable and actually showed improvement. Fast forward to now.

> > >

> > >

> > > Since return to school after Christmas break, he has done a 360 on

>behavior. He

>

> > >

> > >

> > >is easily irritated, talks incessantly, doesnt follow direction without

>repeated

>

> > >

> > >

> > >coaching, gets up in class, interrupts class, argues with adults, etc AND

>has

>

> > >actually hit people once last week and once this week. Interestingly, his

> > >allergy symptoms (sneezing, congestion, bed wetting are all reappearing) We

>are

>

> >

> >

> > >certain he is not getting gluten anywhere.

> > >

> > >

> > > Thank GOD his teacher and principal are amazingly patient, working with

him

>but

>

> > >

> > >

> > >they are getting a bit frustrated. I communicate constantly with them so

>they do

>

> > >

> > >

> > >know we are trying to get him back to where he was. At first we all thought

>it

>

> > >was the break that caused a lack of routine or structure but its been a

>month

>

> > >and he is well into the school routine.

> > >

> > >

> > > I took him back to neurologist. He says it shows the Ritalin just isnt

>working

>

> >

> >

> > >for him anymore at 15 mg. I said well we cannot crank up the Ritalin dose

>again,

>

> > >

> > >

> > >the eye tic will come back (Donovans tic was his eyes ROLLED up leftward

>about 2

>

> > >

> > >

> > >times a min) We decided lets try a longer acting but slower to peak and

>slower

>

> > >to disappate rx like Concerta. First week on Concerta 18 mg and not so

>good...he

>

> > >

> > >

> > >hit at a teacher and a girl this week. If he continues to hit people they

>will

>

> > >suspend him or expell him. We moved to this town in July 2010 JUST to get

>him

>

> > >into this excellent school district. Neurologist increased Concerta to 27

mg

>

> > >daily yesterday.

> > >

> > >

> > > Ok I am at my wits end. Going to get a hold of holistic pediatrician today

>but

>

> >

> >

> > >any suggestions ?? What is diet ? donovan was on a modified GAPS diet

>for a

>

> > >

> > >

> > >while but is now just as I mentioned above.

> > >

> > >

> > > I think my son needs the Concerta right now so be it. I dont like him on

> > >stimulants but getting expelled is NOT an option. I work full time and make

>the

>

> >

> >

> > >money, my husband makes less than $20,000/year so I cannot stay home. I

work

>for

>

> > >

> > >

> > >a wonderful MD who lets me take off when I need to get him to appointments

>and

>

> > >my hubs does the rest. My husband is usually home when Donovan gets off

>school.

>

> >

> >

> > >Donovan goes to a daycare latchkey. The school latchkey kicked him out 2

>weeks

>

> > >ago for this horrid behavior.

> > >

> > >

> > > My goal is to get to the bottom of this big change in him. I appreciate

>every

>

> > >one who has read this far and all your suggestions !!

> > >

> > > Donna Gilliam, mom to Donovan age 7

> > >

> > >

> >

> >

[Guest guest]

.

Thank you, I agree your posts are very helpful. Do you know what the

hopkins study was that confirmed the immune activation. I feel confused as to

why Immune problems rising from viral (or some pathogen) isn't more public

information or why they wouldn't be researching this area more.

[Guest guest]

One other thing to mention with regard to coconut milk- the so delicious brand

with probiotics has strep probiotics. Some won't care, but for any PANDAS folks

this will matter.

Sent from my iPhone

On Feb 6, 2011, at 9:46 PM, <thecolemans4@...> wrote:

Huh? I don't understand Dr G's comment....

I did try coconut milk. I also did coconut oil. I'd get a burst of energy

(nice if you have CFS) and be able to clean my house and cook dinner. I even

lost weight like very suddenly - both times I did it. But after a couple of

weeks, I started to feel wierd, and it went away after I stopped the oil. Came

back again a couple weeks after the next time I tried it. I really miss being

able to choke down a tablespoon of that nasty stuff and then feel it kick in in

the next hour, but ultimately it turned out to make me feel worse...

I never figured out why it bothered me, but something I read said it was high in

something that (while usually good) turns out to feed a virus - can't remember

but probably HHV6.

________________________________

From: Lucy Town <lucy1628@...>

Sent: Sun, February 6, 2011 7:37:32 PM

Subject: Re: Re: Hello New Here - **LONG**

When I asked if my son should drink coconut milk, Dr. G. said, " if it's

something thing he grows up with " . So I didn't start my son with coconut milk

as he doesn't grow up with it and it contains sugar.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Sun, February 6, 2011 5:30:51 PM

Subject: Re: Re: Hello New Here - **LONG**

Is Dr. G good with coconut milk? I noticed that our grocery store is carrying it

and would like to try it

Robyn

From: chocolatiluv <chocolatiluv@...>

Subject: Re: Hello New Here - **LONG**

Date: Sunday, February 6, 2011, 5:24 PM

> >

> > Interesting the point about Soy Protein. What milk do you use as a

>substitute?

> >

> >

> >

>

Donna

I thought Dr. G says no coconut or nuts & rice has whole grains in these

milks.Let me know if I am wrong. Hopefully this site could update the whole diet

protocol that would be great for these parents.

Thanks

Carole

[Guest guest]

Hi Robyn,

Coconut milk is considered tropical and therefore, for most of us in North

America, a forbidden food on the diet.

There were some recipes circulating a few years ago containing coconut milk,

as I believe it is highly used in the formerly popular SCD. Quite a few on

the list started trying it before Dr. G chimed in that coconut anything is

highly allergic and not to be used with his patients.

Sorry for the bad news. I know how it is to get excited about trying

something new.

Warm regards,

Lori

_____

From: [mailto: ] On Behalf Of Robyn

& Greg Coggins

Sent: February-06-11 8:31 PM

Subject: Re: Re: Hello New Here - **LONG**

Is Dr. G good with coconut milk? I noticed that our grocery store is

carrying it and would like to try it

Robyn

From: chocolatiluv <chocolatiluv@... <mailto:chocolatiluv%40>

>

Subject: Re: Hello New Here - **LONG**

<mailto:%40>

Date: Sunday, February 6, 2011, 5:24 PM

> >

> > Interesting the point about Soy Protein. What milk do you use as a

substitute?

> >

> >

> >

>

Donna

I thought Dr. G says no coconut or nuts & rice has whole grains in these

milks.Let me know if I am wrong. Hopefully this site could update the whole

diet protocol that would be great for these parents.

Thanks

Carole

[Guest guest]

I figured as much. Thanks, Lori. I appreciate the reply!

All the best,

Robyn

From: chocolatiluv <chocolatiluv@... <mailto:chocolatiluv%40>

>

Subject: Re: Hello New Here - **LONG**

<mailto:%40>

Date: Sunday, February 6, 2011, 5:24 PM

> >

> > Interesting the point about Soy Protein. What milk do you use as a

substitute?

> >

> >

> >

>

Donna

I thought Dr. G says no coconut or nuts & rice has whole grains in these

milks.Let me know if I am wrong. Hopefully this site could update the whole

diet protocol that would be great for these parents.

Thanks

Carole

[Guest guest]

Carole,

We just saw him a week ago (our first appt), and you are right. he wants no

tropical fruit, that includes coconut and coconut milk. He wants no rice

milk or ANY whole grains. So you could make it from white rice, but not

brown.

Hth,

Kathi

From: [mailto: ] On Behalf Of

chocolatiluv

Sent: Sunday, February 06, 2011 8:25 PM

Subject: Re: Hello New Here - **LONG**

> >

> > Interesting the point about Soy Protein. What milk do you use as a

substitute?

> >

> >

> >

>

Donna

I thought Dr. G says no coconut or nuts & rice has whole grains in these

milks.Let me know if I am wrong. Hopefully this site could update the whole

diet protocol that would be great for these parents.

Thanks

Carole

[Guest guest]

,

I am so bummed that we can’t use refined extra virgin coconut oil, it’s so

darn healthy. It has a lot of natural antimicrobial and some say antifungal

properties, so maybe using it a lot caused a die-off OR it was too much using it

every day.

I am going to stop it for my son b/c he’s 5 and can’t tell me how it feels

and we just started with Dr. G, but if I had CFS and it helped a little, I’d

check into it more, but that’s just my humble opinion. Sometimes I’m

finding that the reason why DAN! doesn’t work for our kids is b/c it’s too

much of too many things, in high doses and every day. Like we may try a supp

and my son has brighter eyes and seems more ‘clear,’ but then using it day

after day after day…it’s just too much for his little body to deal with and

we lose the gains. MY son can’t tolerate the high dose supps and there’s no

info or studies on many of them and no one knows –well, how long should they

be on them to help an issue?

Just a thought, as an adult if you got a good reaction from it. Maybe you could

try it a couple times a week. Also, my understanding is that you want unrefined

coconut oil, but that’s based on SCD which we’ve been on for 1 ½ years. I

don’t remember what the refining process did that Elaine Godshall found

wasn’t good for the gut/brain connection.

http://www.breakingtheviciouscycle.info/knowledge_base/kb/coconut_oil.htm

http://www.coconut-info.com/

some links, in case you haven’t read about it b/c if it helped you that much,

it’s worth really checkin’ it out! J

kathi

From: [mailto: ] On Behalf Of

Sent: Sunday, February 06, 2011 9:46 PM

Subject: Re: Re: Hello New Here - **LONG**

Huh? I don't understand Dr G's comment....

I did try coconut milk. I also did coconut oil. I'd get a burst of energy

(nice if you have CFS) and be able to clean my house and cook dinner. I even

lost weight like very suddenly - both times I did it. But after a couple of

weeks, I started to feel wierd, and it went away after I stopped the oil. Came

back again a couple weeks after the next time I tried it. I really miss being

able to choke down a tablespoon of that nasty stuff and then feel it kick in in

the next hour, but ultimately it turned out to make me feel worse...

I never figured out why it bothered me, but something I read said it was high in

something that (while usually good) turns out to feed a virus - can't remember

but probably HHV6.

________________________________

From: Lucy Town <lucy1628@... <mailto:lucy1628%40> >

<mailto:%40>

Sent: Sun, February 6, 2011 7:37:32 PM

Subject: Re: Re: Hello New Here - **LONG**

When I asked if my son should drink coconut milk, Dr. G. said, " if it's

something thing he grows up with " . So I didn't start my son with coconut milk

as he doesn't grow up with it and it contains sugar.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...

<mailto:rngcoggs%40sbcglobal.net> >

<mailto:%40>

Sent: Sun, February 6, 2011 5:30:51 PM

Subject: Re: Re: Hello New Here - **LONG**

Is Dr. G good with coconut milk? I noticed that our grocery store is carrying it

and would like to try it

Robyn

From: chocolatiluv <chocolatiluv@... <mailto:chocolatiluv%40> >

Subject: Re: Hello New Here - **LONG**

<mailto:%40>

Date: Sunday, February 6, 2011, 5:24 PM

>

> We only drink almond, rice or coconut milk. All are calcium fortified.

>

> Donna

>

> --- In <mailto:%40> , Kay <kp_mlist@>

wrote:

> >

> > Interesting the point about Soy Protein. What milk do you use as a

>substitute?

> >

> >

> >

>

Donna

I thought Dr. G says no coconut or nuts & rice has whole grains in these

milks.Let me know if I am wrong. Hopefully this site could update the whole diet

protocol that would be great for these parents.

Thanks

Carole

[Guest guest]

I wonder if virgin cold pressed coconut oil is forbidden also. It is high in

lauric acid and is said to be a very good anitviral

 

Petra

From: chocolatiluv <chocolatiluv@... <mailto:chocolatiluv%40>

>

Subject: Re: Hello New Here - **LONG**

<mailto:%40>

Date: Sunday, February 6, 2011, 5:24 PM

> >

> > Interesting the point about Soy Protein. What milk do you use as a

substitute?

> >

> >

> >

>

Donna

I thought Dr. G says no coconut or nuts & rice has whole grains in these

milks.Let me know if I am wrong. Hopefully this site could update the whole

diet protocol that would be great for these parents.

Thanks

Carole