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Hello all, my DD8 has PANS and also CVID. Her IgG overall is very low (low 400s) and two subclasses are also very low. She has not gained weight in a year and a half. In fact she has probably lost one or two pounds here and there but has literally stayed the same weight since at least Sept of 2011. She has always been very tall for her age, in the 90 th percentile but now is hardly growing in height either. She's only grown an inch in the past year instead of the normal 2.5 inches for her age. She is now in the 80th percentile for height. She is a very picky eater, but DOES eat and has a good appetite. I'm getting really worried and honestly don't know what I should be looking at right now.

 

Should we be doing some kind of metabolism tests? Metametrix? Our pediatrician has offered up nothing in this regard. Dr. B has said she needs IvIg but will this help with weight gain?? We have been waiting since November for them to submit the preapproval paperwork, so I don't even know when/if this will become an option.

 

Thank you in advance for any advice!!

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Is she on Aderol or Ritalin or a similar drug? These stimulants can really diminish appetite. For 3 years when starting when she first got PANDAs, we could not get our now dd7 past 50 pounds. No one seemed worried. Be persistent and careful in getting help regarding eating issues. Too often health care personel view these problems as an eating disorder and want to go the psychiatric route.

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Our DD sounded similar and had dropped to 7% for weight. Very low IgG 1s and 3s. Became a picky eater and self regulated to vegan diet with emphasis on carbs. She has a twin who was over 100% for height and weight. The direct comparison had me very worried because I felt they ate similar amounts.

 

What turned it around for us was focusing on her gut. We tested via Metametrix for both food allergies & comprehensive stool. Genovia for vitamin & mineral deficiencies. She had no digestive enzymes,,, so no absorption of what was eating. She had low zinc, d, b, magnesium, iron, high copper, yeast, decent 'good' bacteria. She was not KPU positive.

 

We currently give her glutamate, probiotics, digestive enzymes prior to each meal and supplement for all deficiencies. She is now in 40% for weight.

 

I am very greatful we did those tests and continue to use comprehensive stool to track progress. With our co-pay all three tests were probably in range of $500 to $600 but well worth it to discover what she specifically needed. I feel like she has the 'fighting' power to deal with her chronic issues. We have not done IVIG with this particular child and she continues to make progress even in her IgG subclasses, WBC and RBC, etc.

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I should add she is also being treated for multiple chronic infections and viruses with multiple antibiotics and anti-virals.

 

She also has a heavy metals issue of lead which may have caused stripping of her digestive enzymes. I recently posted a great link about copper toxicity which covers heavy metals and how they are all interconnect. Please check my history for link. It's worth the read. Even discusses self limiting diets due to these deficiencies.

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I was going to mention heavy metals too. When I had mercury poisoning some years ago, I dropped a lot of weight and couldn't gain it back even when I worked with a nutritionist. Once I went through chelation I naturally popped back up to my normal weight. It was, as SF Mom mentioned, an absorbtion problem caused by the mercury.

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We have similar issues - my 5 year old has been 36 lbs since I can remember. He's very tall for his age, but still wears size 18 mo pants (thank heaven we live in Florida where he can wear shorts 11 months out of the year - other wise he'd always look like he's waiting for the floods!) He has sensory issues, so he won't wear the pants that have the buttons on the inside to size them. (On the plus side, haven't had to shop for clothes much for him, just new shirts now and again!)

 

Our pediatrician did run a full metabolic panel on him to rule anything else out (came back clear), but acknoledged that while my son was underwieght and it was worrisome - there were 2 underlying causes for it. 1) His OCD is tied to food much of the time. He will go days without eating anything it it's not "just right", or will go days eating only one thing (currently it's Resses's puffs cereal) for all meals. When he's doing better between infections - he eats well and is an adventurous eater, but during high OCD times we struggle. The other reason - his body has constantly been fighting infection over the past 3 years (dozens of strep infections since Jan 10). When he had his T&A surgery in Fall 2011, he was 100% for 6 weeks post op (until he tested + again!) and in that 6 weeks he gained 8 lbs (but has lost 2 since).

 

Our ped has suggested using things like pediasure or even carnation instant breakfast in his milk to help boost calories and stimulate weight gain. It's one of the main reason we haven't made any dietary changes in our PANDAS fight - because we can't get him to eat much as it is - we don't want to limit the few things he DOES eat at the risk of him not eating anything at all.

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My middle son who is PANS and has CVID had always been very small and thin. We kept thinking he would get a growth spurt when he hit puberty but that didn't happen. We started all of our children on camels milk 5 months ago and all of the sudden he started to gain weight and grow like crazy. Maybe it was coincidence, but I don't think so because my daughter hit a growth spurt at the same time. His growth has been amazing since the camels milk. I have heard similiar stories from others who had small children. It's also good for the immune system. Of course it isn't cheap, but we just use a minimal amount, but it has worked for us. Hope you find some answers.

 

Dedee

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Hi, just wanted to add a bit about my daughter. She is very petite, always has been. We did a series of 7 hd ivig 2 years ago. She did very well until she got sick about a year ago. We restarted ivig this past August. She had not gained any weight since stopping, after the first ivig she gained 5 pounds that month and kept it on! She only weighed 50 lbs, so that is quite the gain for her. She also has CVID. I think that her body was so busy fighting the germs that she could not take the energy to put toward growing. She looks great, and relatives that have not seen her in a few months commented on the difference that they could see. Her igg levels are also in the low 400's.

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Thank you to all of you for, as always, the invaluable experiences and insight! Hopefully we will get some help from IvIg eventually. In the meantime I awaiting to hear from our pediatrician regarding checking Thyroid functions and for Celiac disease. I am also going to look into Camels milk... What is the big difference with that particular milk? Would it be similar to having raw cows milk?

Thanks again!!

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  • 2 weeks later...

How do you check the thyroid? Just interested because I've always been ridiculously skinny myself, even though I eat plenty - although it is in the family, in my case; my dad's exactly the same way. A couple of times recently I've had to make a special effort to put on a few extra pounds because my periods had stopped.

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One of our PANDAS kids has this issue (the most severe, DS14), the other does not. DS14 is about 80 lbs, 4'11". He also has delayed puberty. Endo doc says they can give testosterone shots to start puberty, but we are hesitant b/c not sure what it might do to his PANDAS/PANS symptoms. His appetite is low, but he will eat, as long as we remind him to, but very picky eater. I, his dad, am not large or tall, and our family doc says not to worry. His sister who also has PANDAS, is now 17...and even on ADD meds with a low appetite is normal height and weight, 5'5", 130 lbs. we are hoping once puberty kicks in, he will grow, but it is a worry. Dr Latimer thinks he has some OCD eating issues. He doesn't want his food to touch, but otherwise has never complained about it not being right. He can put down a happy meal with the best of em...it just might take an hour. Thyroid tests, celiac, etc have always been negative. So, I don't know what the problem is...just another mystery with him.

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I've recently been to a seminar which focussed on malabsorption in the gut, so that's what I would be considering. Most doctors have no clue about the gut brain axis and that many neurotransmitters have their origin in the gut. For us, seeing a Biomed dr has been the BEST thing we did for DS. Until then I had no idea he had gut issues!

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You absorb calories through your gut, which is teaming with microbes. It's the microbes that regulate body fat. Remember all that news about bacteria contributing to obesity a few years back? The reverse is also true. You probably can get skinny by changing your gut bacteria too.

 

Or, to quote Time magazine in 2009:

 

"That suggests that factors like gut microbes, which scientists traditionally would not think exerted influence on genes, may have a surprisingly powerful effect, changing how a body's genes would normally control the way the body digests food and breaks it down into energy. It makes sense, when you consider that the great majority of the cells and genes in the typical human body belong to the microbiota."

 

I'd look into this angle in addition to whatever else you're doing.

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