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We really didn't need yet another issue... feeling a bit beat down by everything in spite of the fact that sure, perhaps this is an angle we might find helpful to address. So far just poking around here, possible causes could be things like pyroluria, gluten issues, something about zinc... any one of which might make sense.


If you have a child with slow growth issues, please pipe in about what the problem was, how you addressed it and whether that had any impact on the PANS/PANDAS symptoms (and specifically any impact on OCD). Thanks!


Adding: anyone experience slow growth due to an immune deficiency and did IVIg "fix" it?

Edited by jan251
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My son dropped off his growth curve around age 10. It wasnt dramatic. His weight curve dropped from 75th to 25th and his height dropped from 80th to 45th. The doctors told me it was not that unusual around the time of puberty and to not be concerned. At age 12 he continued to stay in the lower percentiles and he had delayed tooth eruption. Prior to this he was one of the early ones to get teeth -- yet now he was late to lose them. Age 12 was also one of the worst years for his PANDAS - it was manageable with antibiotics prior to this. Age 12 was awful.


Eventually, he was screened for celiac and his tissue transglutaminase was very elevated. This is a marker specific to celiac in about 95 percent of cases. It could have been a false positive or a problem with another autoimmune condition -- but it was enough to go gluten (and dairy) free.


Within 6 months, he lost all the teeth he was supposed to lose and launched into his major growth spurt - grew 5 inches that year and is still growing. His PANDAS issues resolved but sadly returned a year later. He still suffers as a result of gluten/dairy/soy contamination/infection (strep) and he's allergic to a host of other things now. We continue to work on gut issues and methylation (some of his supplements we discovered were doing more harm than good). We are in a better place as we get older -- but not healed by any means.

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DD was in the 7% for weight and at one time her Dr.'s would have classified her with an inability to thrive.


The thing that has helped her the most with proper growth is IVIG for Selective Immune Deficiency. She is currently in the 59% for weight and 71% for height. We also put her on a low dose of DHEA. It is a regulating hormone and children with chronic infection are often depleted due to adrenal fatigue. A 'very' low dose has definitely helped her grow. She has put on some weight recently in preparation for another growth spurt.


Our older son had also not put on weight for almost 2 years. Similarly he was treated for Selective Immune Deficiency and is now in the 64% for weight and 95% for height. He is also on low dose DHEA.

Edited by sf_mom
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sf_mom, Would you mind sharing if the IVIG was covered by insurance because it was for Selective Immune Deficiency? What tests and what kind of doctor gave that diagnosis? And was it the same doctor that prescribed the low dose DHEA


Our 10 year old PANS (and Pyro) daughter has been has also been diagnosed with Idopathic Short Stature . She hovers about the 2nd % for height. She just doesn't grow much and prognosis for her adult height is severely, severely low.


I am wondering if your treatments for Selective Immune Deficiency thru IVIG/DHEA would be a direction for us to go in. Do you have links/recommendations what I should do next to pursue this. THANKS!

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The way we qualified for Selective Immune Deficiencies was to track our children's IgG Subclasses over time. Every two or three months we tested CBC, CMP, Subclasses 1 to 4, Total Serum, IgA and IgM. Over 1 to 2 year term we had regular testing that showed their subclasses as deficient and dropping in all categories. DD had very low immune function.


We have a team of Dr.'s that all have in-depth knowledge of Lyme et al..... so, we divided approval amoung Dr.'s. Our DD has a pediatric neurologist, an integrative LLMD, an integrative Dr. that specializes in Autism. Our neurologist submitted for approval, our LLMD currently oversee and prescribes. We also have a local immunologist that would have prescribed IVIG for Selective Immune Deficiencies and a recommendation to that immunologist from her other Dr.'s. All her Dr.'s agreed she needed IVIG. She also just had a peer to peer review and qualified for extended treatments as her immune function is still low even after 2 years of IVIG treatments every three weeks.


You can purchase DHEA over counter at 5 m.g. Our LLMD prescribed compounded version at 2.5 m.g. and she currently weighs 69 pounds.


I would highly recommend you test your DD for immune deficiencies as her % are indicative of an inability to thrive. I think she could be helped tremendously if she is deficient.

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  • 3 weeks later...

For my PANS kids, a completely different cause was chronic sinusitis. + sleep apnea. Neither snored, but neither could quite shake their sinus infections... it's like they were always smoldering, ready for a fresh cold to wake them up.


It turns out that the deep sleep (stage III, IV) are needed for growth hormones as well as all sorts of memory consolidation, immune system modulation. My kids had apnea/hypopnea episodes 11-27 x / hr, some wheezing, and restless legs from low serum ferritin (<50 is enough to raise the risk of sleep apnea). Together the result was that he kept bopping between brief periods of awakeness and stage I and II sleep. Not a refreshing night's sleep.


Once treated, their emotional resilience, motivation, attention, and growth all improved. Especially my 2nd one, who at 13 was nowhere near puberty, at ~2nd percentile, and waking 19x/hr. He had had 0% stage III sleep. And kept getting ill. In 8th grade he was mistaken for a 5th grader.


Once he began using a CPAP his social/emotional growth blossomed, and colds no longer all became bouts of sinusitis. They say it takes months to catch up on the chronic sleep deprivation, but eventually he also entered puberty (in 10th grade), and in 10th and 11th caught up in height.


He's now around the 50th or 60th percentile. I think it took being on the CPAP (now he wakes ~2/hr), and also getting antibiotics so he wasn't in a constant state of fighting a smoldering sinus infection.


Your mileage may vary, but it's worth looking at things like the serum ferritin and sleep apnea as well. Especially if you're also seeing ADHD, with yawning or paradoxical hyperactivity (if your kid is small).



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