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Food as a cure for PANDAS - any success?


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Our son has been GFCF for about 4.5 years now, and we know that dairy is a huge issue for him along with a couple other allergens, soy, peanuts, and shellfish.

 

Lately I've been really thinking about taking him completely off all sugar, fruit's etc. and even thinking about trying the GAPS diet or a Raw food diet. Intuitively it just seems to make sense that these diets will help heal the body and should also impact the inflammation in his body.

 

Does anyone have any experience with diets that have made a difference with their PANDAS kids?

 

Thanks in advance!

 

Julie

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Hi Julie!

 

We were GF for a number of years but didn't make a dent in things for my daughter with PITANDS until we implemented the GAPS

diet and started homeopathy. Our homeopath is Joette Calabrese and she's helped us a great deal. After day 3 on the intro for the

GAPS diet I saw signifigant improvement in DD's handwriting. Now after a few months of homeopathy things are so much better! Very few

tics and some liveable OCD, but the rages are SO reduced. Things are much more peaceful around here. We are all doing GAPS as a family

because we are all gluten-intolerant. We've been on GAPS since last March. Full-GAPS is much easier than intro. I had the added bonus of

not gaining as much weight as usual with baby #6 and he's gaining weight just fine while nursing with me doing GAPS. My daughter has gone through

6 rounds of IVIG (the last one was in May) and has been off of any antibiotics since March. We are very grateful! Just using probiotics, Omega 3s, Vit. D, Fermented Cod-Liver oil. I intend to continue to update the group on her progress.

 

God bless,

Holly

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  • 4 months later...

Just wanted to chime in here. It's been a while since I've posted.

 

Zithromax was doing nothing for us, so I took the plunge after a year and took him off, and our family has' beenon Gaps now for 6 1/2 months. Improvements with our Pandas son started around 3 weeks in (he majorly detoxed on day 3 through 7 with fever and vomiting even chicken soup). Now it has gotten to the point where the rages have pretty much gone. If he does get angry, it does not escalate into abuse, just moodiness. Just began probiotics, and by the 2nd week on biokult I started to notice a definite increase in moodiness, frustration, sobbing about insignificant things, etc. These are the same type of behaviors, on a lesser level, but the same as when he was in Pandas mode. I am going to switch him to another probiotic (Gutpro? any ideas?) and am hoping he will normalize soon because my nerves can't stand it anymore. Once you have seen improvement, it makes the regressions so intolerable even if it's on a lesser level than before.

 

This negative reaction kinds of seals the deals on his having Pandas for me (not that I didn't have other proofs before, but he has never had classic tics/ocd, so I always wondered if it was truly pandas). He has reacted in the past to sick family members (sometime a day or two before we knew someone was sick), and now a probiotic strain with strep...done deal.

 

What happens when I introduce yogurt - that also has streptoccus thermophilius in it...anyone have feedback on that?

 

Thanks and good luck to everyone with their healing.

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Just began probiotics, and by the 2nd week on biokult I started to notice a definite increase in moodiness, frustration, sobbing about insignificant things, etc. These are the same type of behaviors, on a lesser level, but the same as when he was in Pandas mode. I am going to switch him to another probiotic (Gutpro? any ideas?) and am hoping he will normalize soon because my nerves can't stand it anymore.

 

i'm so sorry b/c i am in a bit of a brain fog and can't remember things to tell you correct terms -- last year, i began my son on a high level probiotic -- he intenesified the behaviors you are talking about. our dr believed it to be due to the probiotic -- likely one of the strains just wasn't good for him. it's not due to a strep strain -- i can't remember what it's called but it is something that can happen commonly in short-bowel resection patients that do not metabolize the bacteria correctly. you can try to research under my name from last spring. it may not be your issue at all, but if you started seeing the trouble close to when you started the probitioc, it should be something to be aware of.

Edited by smartyjones
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I tend to think diet has a role to play in terms of eliminating or at least reducing those foods which are inflammatory to the gut. If there are gut issues, it make sense that there will be immune issues.

Any of the diets will probably help to some extent - we just kept it simple and eliminated those foods to which DS was sensitive (casein - milk protein) and really reduced gluten, sugar, all grains and potatoes. Given that we ate lots of fresh meat, fish and vegetables and far less refined food, we also eliminated alot of food additives. He's even put on weight which says alot about his improved digestion. After 17 months on the diet, he's done so well we've started to challenge him with dairy and he's had no problem so far.

 

I also think sorting out the balance of the good bugs in the gut is also part of the equation. Supplements, probiotics and a good integrative dr all help.

 

Edit just to say, our cleaned up diet has been a life style change and though we will reintroduce those foods, it will be in moderation only.

Edited by Ozimum
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