Re: Fw: [mb12valtrex] Fw: crazy reactions to foods/

[Guest guest]

Hi

Again your supportive explanations do seem to make connections for me.

I think it is the sugar and sugar like substances that are causing the immune

reactions. The extreme behaviors came out after eating the brownies,

blueberries, gfcf midel ginger cookies and chicken suusage with turbinado sugar

in the ingredients.

When Jake was younger he was able to eat these foods. Since going gfcf  in

November and eliminating yeast/sugar foods he has less tolerance.It does seem

more extreme since starting Nids and adding valtrex and diflucan.

 

The diflucan he takes is actualy liquid fluconazole. It is a sweet smelling,

white not pink tinted thick liquid. He does not seem to react negatively when he

takes it daily. The only difference between now and pre Nids is that Jake took

zinc and vitamin D as supplements and tolerated them well. We stopped when we

started Nids.

I did a little research and those supps along with vit C,A, maganese B6 and

calcium are solid immune boosters and assist in absorption.

Do you think those 2 supplements made such a difference in calming some of his

food sensitivities?

, i just can't believe he has such food sensitivities/allergies and I

never realized.Did you or your kids take any supplements while on the protocol

that helped to calm the immune system? Do you think i should do IGG testing on

him? Will it be reliable since he has not eaten those foods in months?

I also noticed a new tic tonight. His pandas symptoms have been low in the past

few weeks but the tics tonight concerned me.

IS there anything else I should be doing to help him? Dr wants to start

celexa. I wanted to wait until this last fire was put out first.

Vicki

> From: Vicki Eisen <vickieisen@ . com>

> Subject: crazy reactions to foods/overactive immune system?

> mb12 valtrexgroups

> Date: Tuesday, August 5, 2008, 12:39 AM

> I read everyones posts each night but now I need this groups

> expertise.

> My son has been on gfcf diet/anti yeast diet since last

> November.In the first month we saw a major change. He was

> much calmer, focused less outbursts. He then has maintained

> even lost weight and has overall stayed healthier.

> While following the DAN protocol, he went on custom

> probiotics and started having major outbursts.As amatter of

> fact, all supplements made him react. After alot of testing

> and research we recognized an immune dysfuction problem and

> started the Nids protocol.

> He has been on valtrex since April and diflucan since June.

> We have seen very positive subtle changes. The medications

> seem to be helping and Jake is tolerating them well. The

> problem I'm having is with foods. Since going on the

> diets my son seems soooooooomuch more sensitive to foods.

>

> He used to eat everything. He never had any stomach issues.

> Now I recognize that he has enormous food sensitivities.

> Since restricting his diet, if I give him any extra sugars

> like any fruit besides one pear a day he is ballistic. An

> ice pop caused screaming yelling hysterics, and gfcfsf

> brownies caused aggressive freaking out in the classroom

> that I had to pick him up from school.

>

> He is on diflucan and it does seem that these behaviors

> have peaked since June when he started. Potatoes , rice, and

> meats , veggies , preservative free chips and pears seem to

> be the only foods he can eat without issue.

> Why would he be getting more reactive to foods? This kid

> used to eat gummies, candy, chips galore and tons of fruits.

> Is this a yeast die off issue because of added sugar on

> diflucan?

>

> I know this is the right protocol for Jake. He has high

> virus titers, pandas and now obviously extreme food issues.

> Has anyone else experienced

> food sensitivities increasing while trying to calm the

> immune system?

> Please share related experiences or advice!

> Thanks Vicki

[Guest guest]

Hey Vicki-

Sorry I'm just getting back to you  - just got back from TX .

I wish I really knew an answer for you re increasing food sensitivities.  It's

really all just hypothesis ... but sometimes we can get close.  Early on with my

boys - mainly my oldest - I constantly struggled w/trying to figure out his

sensitivities.  We were GFCF initially, and had better success switching to this

diet.  It has been noted in celiac disease (where gluten-free originates)

that some people experience an increase in symptoms when they go GF, even though

they have to.  You don't hear about that much, but it IS published in mainstream

journals.  I know Dr G has said time and again that GFCF can make kids more

reactive.  Then there's all the kids who have to stay gfcf 'cause they're too

sensitive.  My boys stayed gfcf for almost a year then went .  I felt like

gfcf helped initially but I just can't be sure.

BTW - blueberries are high allergenic. 

Re the IgG Food panel - I dunno if it's worth the hundred bucks right now ... I

doubt you've had him on the meds long enough yet to have gotten to that point

where things start to cool down. It could be an answer, so if you have an extra

hundred laying around, then sure.    I personally don't care to have one - my

kids were really low, and we didn't have to have a super strict diet, but

when my oldest reacted, he went nuts (on soy). They're not always so helpful in

targeting the specific foods - I've seen Dr G 'say' (on chat years ago) that

they're more useful in just identifying how reactive the immune system is to

foods overall, and that some people have had so many positives their kids

wouldn't be able to eat, yet he still had them mostly on the Do's and Don'ts...

but a few he has restricted the specific things ... I think he uses more than

just that panel for those decisions.  Anyway, you can ask to monitor the

eosiniphils on the CBC

(they need to be under 1.5 - I just discovered my son's was 3.5 so now I'm

right with you on having to hunt down foods - if the nizoral doesn't take care

of it - which it could - we'll see).  Also, monitoring IgE on the

immunoglobulins panel can sometimes point to an increase in food sensitivities. 

Those aren't usually done more often than 6 months apart, and aren't always

repeated unless there is something being monitored - you could ask Dr

when the last one was done and if/when he plans to do another.  It's an

expensive lab and not one to be doing often.

There are other issues associated with foods that can cause behavior changes

without actually causing immune reactions. One I cannot pull the word out of my

brain right now but it's something to do with ??? sulphates??? - help me out...

it's that thing you give them epsom salt baths for ....   My oldest was

sensitivie in the beginning.  Their ears also turn red on the outside - see if

that happens.  While in sucks for behavior, it isn't bringing any harm to the

child or having a negative reaction.  You can try warm baths w/a cup of epsom

salt a few times - I honestly couldn't tell you if it would help - but heck,

it's a nice bath and won't hurt as long as he doesn't drink it.  I did it and

they seemed to like it - I don't know if it really helped but it soothed *me* to

feel like I might be doing something helpful.   But don't go investing in the

creams ... and I promise you don't want to go investigating into it and reading

about it - it's bad

enough to have to restrict some things - go diving too deep trying to figure

out what's going on and you run the risk of making yourself as crazy as I've

gone! lol.  And it'll usually get better on it's own.

Re the supplements - you don't always want immune boosters.  They're not

necessarily benign.  You do want the daily multivitamin though.  Sometimes

things that are good for some are bad for us.  I can't even take calcium and I

really really can't take vitamin C supplements - they're the only thing that

will send me to bed - probably the citrus base.  B vitamins can be really

allergenic depending on where they come from, and I haven't looked into all the

choices - just do better not taking them.  I spent decades trying to find out

what supplements could help me.  I found that the answer was none before I ever

found Dr G - he was just the first doc to explain why in a way that related to

my experiences.

Tics are going to come and go w/PANDAS and you're not always going to be able to

figure out what triggered it unless it happens 3+ times.  If these food

sensitivites haven't been experienced 3plus times, I wouldn't label them until

they have.  

I'd go ahead and go for the SSRI.  They have immune modulating properties and

could help settle things too.  With PANDAS (and of course ) they can be

a very important piece, and it's definitely time to be starting that trial.  I

myself have a very hard time with them but I would urge you to go thru all the

trials - it's one of the best things you can do.  I looked back thru notes and

remembered the difference zoloft made for us w/my son.  There's no guarantee it

won't stir up the mix worse and really get confusing ... but you'll never know

till you try and I just say go for it and hate me later for my opinion.

One thing to remember.  When my son started " waking up " and getting better, he

started having some horrendous tantrums and meltdowns.  They can signal the

beginning of change.  That doesn't seem too fair, but it can.  I have many times

blamed a food reaction that was actually a behavior problem (often from a new

skill or new awareness).  That's why I have the 3+ rule - and sometimes if it

was an important food, I'd test it until I had 5 times behind me to be

absolutely sure.  But that was by having a very clean diet a couple of days,

then adding in something suspicious maybe twice a day for a couple of days and

see if our world fell apart.  But even then, my own anxiety and my anticipation

could change my own behavior and provoke a tantrum .  So it's rough.  I'd fall

back on checking eosinophils for a while, and maybe get a little white bread

going?  With doctor's approval first.

Wish I could help.  And watch out for other possibilities ...

HTH-

crazy reactions to foods/overactive immune system?

> mb12 valtrexgroups

> Date: Tuesday, August 5, 2008, 12:39 AM

> I read everyones posts each night but now I need this groups

> expertise.

> My son has been on gfcf diet/anti yeast diet since last

> November.In the first month we saw a major change. He was

> much calmer, focused less outbursts. He then has maintained

> even lost weight and has overall stayed healthier.

> While following the DAN protocol, he went on custom

> probiotics and started having major outbursts.As amatter of

> fact, all supplements made him react. After alot of testing

> and research we recognized an immune dysfuction problem and

> started the Nids protocol.

> He has been on valtrex since April and diflucan since June.

> We have seen very positive subtle changes. The medications

> seem to be helping and Jake is tolerating them well. The

> problem I'm having is with foods. Since going on the

> diets my son seems soooooooomuch more sensitive to foods.

>

> He used to eat everything. He never had any stomach issues.

> Now I recognize that he has enormous food sensitivities.

> Since restricting his diet, if I give him any extra sugars

> like any fruit besides one pear a day he is ballistic. An

> ice pop caused screaming yelling hysterics, and gfcfsf

> brownies caused aggressive freaking out in the classroom

> that I had to pick him up from school.

>

> He is on diflucan and it does seem that these behaviors

> have peaked since June when he started. Potatoes , rice, and

> meats , veggies , preservative free chips and pears seem to

> be the only foods he can eat without issue.

> Why would he be getting more reactive to foods? This kid

> used to eat gummies, candy, chips galore and tons of fruits.

> Is this a yeast die off issue because of added sugar on

> diflucan?

>

> I know this is the right protocol for Jake. He has high

> virus titers, pandas and now obviously extreme food issues.

> Has anyone else experienced

> food sensitivities increasing while trying to calm the

> immune system?

> Please share related experiences or advice!

> Thanks Vicki

[Guest guest]

Hey Vicki - 2nd email tonight - one other thought I wanted to add.

Yeast's function in the gut is to digest/process excess sugar.

It could be that now that your son isn't full of gut yeast, he's far more

sensitive to sugar that was already a problem but being gobbled up by yeast.

??

Possible?  Was he a very yeasty kid?  Did he have the sour milk breath odor (my

kids were big responders but didn't have that - but my sister did)?  Was he a

giggly 'drunk' before antifungals?

Just wondering....

crazy reactions to foods/overactive immune system?

> mb12 valtrexgroups

> Date: Tuesday, August 5, 2008, 12:39 AM

> I read everyones posts each night but now I need this groups

> expertise.

> My son has been on gfcf diet/anti yeast diet since last

> November.In the first month we saw a major change. He was

> much calmer, focused less outbursts. He then has maintained

> even lost weight and has overall stayed healthier.

> While following the DAN protocol, he went on custom

> probiotics and started having major outbursts.As amatter of

> fact, all supplements made him react. After alot of testing

> and research we recognized an immune dysfuction problem and

> started the Nids protocol.

> He has been on valtrex since April and diflucan since June.

> We have seen very positive subtle changes. The medications

> seem to be helping and Jake is tolerating them well. The

> problem I'm having is with foods. Since going on the

> diets my son seems soooooooomuch more sensitive to foods.

>

> He used to eat everything. He never had any stomach issues.

> Now I recognize that he has enormous food sensitivities.

> Since restricting his diet, if I give him any extra sugars

> like any fruit besides one pear a day he is ballistic. An

> ice pop caused screaming yelling hysterics, and gfcfsf

> brownies caused aggressive freaking out in the classroom

> that I had to pick him up from school.

>

> He is on diflucan and it does seem that these behaviors

> have peaked since June when he started. Potatoes , rice, and

> meats , veggies , preservative free chips and pears seem to

> be the only foods he can eat without issue.

> Why would he be getting more reactive to foods? This kid

> used to eat gummies, candy, chips galore and tons of fruits.

> Is this a yeast die off issue because of added sugar on

> diflucan?

>

> I know this is the right protocol for Jake. He has high

> virus titers, pandas and now obviously extreme food issues.

> Has anyone else experienced

> food sensitivities increasing while trying to calm the

> immune system?

> Please share related experiences or advice!

> Thanks Vicki

[Guest guest]

Hi friend,

I had to read your response to my husband tonight. He gets so frustrated as do

I, but my knowledge and research helps me stay focused. Having an email pal like

you and others helps me keep my sanity!

 

Everything you have said makes sense. I think Jake has always had these

sensitivities. But he ate all these foods and reacted I just didn't realize it

was the food from 3 hours before. Now since gfcf /nids diet it is so much more

pronounced. Yes, Jake was yeasty, giggled like a maniac and had yeast breath

every morning. You're right not anymore!!!

 

You're 3+/5+ rule is the right way to do it. He'll have a major reaction and i

play the guessing game. I have found that foods I thought were the culprit might

not

 be. How are you on spices? I think they do a # on him.

 

I can't believe how on target you are on the pandas/ tics/ and food reactions.

How are you and your family feeling these days? I am very interested in knowing

more about your experiences before and after nids. I have a 12 year old too who

is borderline asd, mostly language disordered he is in resource room and

mainstreamed for most of the day. He does not have an overreactive immune system

like his brother but I wonder how i can help him more too.

 

Thank you for all the info you give me. If you would like to email me directly

at vickieisen@... to give me more background on your travels thru

biomedical treatments for you and your family that would be great. I know you

are probably busy so whenever you have a chance.

Vicki

> From: Vicki Eisen <vickieisen@ . com>

> Subject: crazy reactions to foods/overactive immune system?

> mb12 valtrexgroups

> Date: Tuesday, August 5, 2008, 12:39 AM

> I read everyones posts each night but now I need this groups

> expertise.

> My son has been on gfcf diet/anti yeast diet since last

> November.In the first month we saw a major change. He was

> much calmer, focused less outbursts. He then has maintained

> even lost weight and has overall stayed healthier.

> While following the DAN protocol, he went on custom

> probiotics and started having major outbursts.As amatter of

> fact, all supplements made him react. After alot of testing

> and research we recognized an immune dysfuction problem and

> started the Nids protocol.

> He has been on valtrex since April and diflucan since June.

> We have seen very positive subtle changes. The medications

> seem to be helping and Jake is tolerating them well. The

> problem I'm having is with foods. Since going on the

> diets my son seems soooooooomuch more sensitive to foods.

>

> He used to eat everything. He never had any stomach issues.

> Now I recognize that he has enormous food sensitivities.

> Since restricting his diet, if I give him any extra sugars

> like any fruit besides one pear a day he is ballistic. An

> ice pop caused screaming yelling hysterics, and gfcfsf

> brownies caused aggressive freaking out in the classroom

> that I had to pick him up from school.

>

> He is on diflucan and it does seem that these behaviors

> have peaked since June when he started. Potatoes , rice, and

> meats , veggies , preservative free chips and pears seem to

> be the only foods he can eat without issue.

> Why would he be getting more reactive to foods? This kid

> used to eat gummies, candy, chips galore and tons of fruits.

> Is this a yeast die off issue because of added sugar on

> diflucan?

>

> I know this is the right protocol for Jake. He has high

> virus titers, pandas and now obviously extreme food issues.

> Has anyone else experienced

> food sensitivities increasing while trying to calm the

> immune system?

> Please share related experiences or advice!

> Thanks Vicki