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Hi, my 7 year old daughter hasn't been officially diagnosed with PANS but I am pretty sure she has it -- I am her mom and I have chronic Lyme, so it makes sense. Anyway, I wanted to ask if others have had problems with stomach aches? She has always been constipated but after a very long protocol for that (mostly magnesium), her constipation is better, but she has a lot of stomach aches. I am wondering if anyone has gotten to the root cause of stomach aches in this group of kids? We are currently doing some testing through a mainstream GI specialist but am wondering what more alternative tests and protocols have helped. Thank you! 

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Hi there,

Ahhh, it sounds so familiar, like a trip down memory lane. :) My daughter, now 16, had stomach aches and constipation her entire life. She had seen numerous GI docs, nutritionists, etc, to try and treat it to no avail. We found the combination of Magnesium Citrate and buffered vitamin C to be the most effective for the constipation; we played around with the amount to get it so it worked, but not too well. Her PANS doc expressed that the buffered C really needs to go with the Magnesium Citrate to be most effective- and she was also particular that we get the Citrate form of Magnesium.

For the stomach aches - and they were bad since she was old enough to tell us about them - what helped the most was putting her on a Low-FODMAP diet. You can google it, but essentially you remove the foods that contain high fermentable carbs (certain fruits, onions, garlic, dairy, wheat - it's not the gluten but the sugars, and a long list of other foods) that take too long to break down in the gut and cause trouble. It has helped her TREMENDOUSLY - especially the onions, garlic, apples. She's 16 now and old enough to make her own choices, and sometimes she'll indulge in some store-bought salsa and at least now knows what to expect. For us, the low FODMAP diet was the single most important thing we did to help her feel better. I'm used to cooking that way now too, and it's really fine once you get used to it. And if you stick to it, and eliminate everything, and then begin the reintroduction phase, you can a sense of what the biggest culprits are.

She also takes a probiotic her PANS doc recommended, I don't know if it helps, but whatever we're doing is working so we'll stick with it. Master Supplements Children's Theralac, Multi-Strain Probiotic for Children, 30 grams

The other thing I might suggest, have you had your daughter allergy tested? We didn't test out daughter until we found our PANS doc and she recommended it - and when we did (my daughter was 12 at that point) we learned that she was allergic to EVERYTHING. ZERO outside symptoms, but probably lots of inflammation and reactions on the inside, and since it seems that the gut is always involved, I wouldn't be surprised if addressing the allergies also helped to quiet the gut troubles.

I hope you are able to find something that helps. At 16 our daughter now feels great - when she makes good choices - and I can't tell you what a pleasure it is to NOT hear the words, "Mom, my stomach hurts". Hang in there, and I hope that relief comes your daughter's way!

 

 

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Wow thank you so much for your reply and all of the detailed information you shared! What type of allergy testing did you do? And did you do it with your regular doctor? I am definitely wanting to investigate food allergies. As for the low FODMAP diet maybe I will look into that. I have of course heard of it but I have been hesitant to take the plunge and do a big dietary change -- but knowing how it helped your daughter definitely tips me more towards trying it. Thanks again for your kind reply!! 

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  • 3 weeks later...

 

 

My daughter gets the stomach aches and the headaches. I use Alka-Seltzer "GOLD" as my magic trick for the stomach aches. But she is on a daily dose of Miralax. This seems kind of tricky to find off line but someone recommended it to me a couple of years ago. I just got my new case of 4 boxes.

The stomach and brain are connected through a large nerve called the vagus nerve. What the brain is feeling, the stomach is feeling, or should be. I've found through research that kids with PANDAS tend to have a deficit connection between the stomach and the brain. The nerve is a like a set of monitoring cables and if certain information is traveling cross the line one or the other, or even both can become upset.

What brought my daughter back from being a wraith (little lord of the rings reference) was what is called "psycho-biotics." They are a special of set pre/probiotics that keep the stomach/brain connection. The nightmare episodes of horrible mood swings almost disappeared to what could be excused as typical pre-teen age girl tantrums might start with slammed bedroom door and an apology 30 minutes later. She is on a OCD med, but minimum doze.

I can recommended the probiotics, but every kid is different not always agreeable to the same probiotics.

Alka-Seltzer Gold.jpeg

Edited by LordChallen
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  • 1 month later...

Sorry for the late reply! My daughter will get an occasional headache, but nothing that I would call a pattern with the stomach aches.( I however get terrible headaches that I can trace to things likes MSG and chocolate, just to mention it.) We did allergy testing through her allergist - it was the skin testing - and we've also done the food sensitivity test through a naturopath, though we didn't learn much from that test. We know she has the gene for celiac - but we've never done the official celiac test - she feels better when she doesn't eat gluten, and in order to do the official test she'd have to go back on gluten for a month, which would most definitely mean a month of pain, so it doesn't make sense to us to for an official diagnosis. I will say that her stomach feels much better when she takes her probiotics - and I'll be looking into the psycho-biotics that LordChallen referenced. I was nervous about the dietary switch too, but it's been manageable, and there's even an app to help until it's all ingrained in your brain :) And my grocery store - even in the small rural area I live in - carries some FODY products and Rao's sensitive marinara sauce! and you can get so much online to make it easier, garlic and onion oils, boullion cubes, etc.

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Maybe have an IgG blood test done for food sensitivities/intolerances. It’s a finger poke and tests a large group of food. We had it done thru our naturopath, but I do know Everlywell has one you can order online directly. We did it for my child and removed the listed foods and the stomach aches and vomiting went away. Not saying this works for everyone though. Good luck!

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