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Calling Endocrine Experts


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So my niece posts on FB last night that her three y.o. presents with 3 days of sudden bedwetting, low grade fever and temper tantrums. She drags him to the pedi who initially says nothing to worry about but she insists on a throat swab - viola - strep. This is the second time in 3 months he's presented with tantrums preceding strep. Thankfully, she takes her crazy aunt (me) seriously and has Pandas on her radar.


She mentioned that her son also recently dropped from 50-75% for weight/height to 5-10% and the pedi tested hormone levels, which came back low. So they have an upcoming appt with an endocronologist. My niece didn't mention what hormone tests were done or the results.


I'm not up on my hormone or thyroid knowledge because it's never been an issue for us. But I know I've seen it discussed. For those who've been down this road, anything I should tell her to look into when they have their appt? What is the Pandas/endocrine link - any? Or separate issues?

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I don' think endocrine issues are separate from PANDAs issues, I think they are intertwined. That being said, the endo and pediatrician will look at them as separate issues. Not necessarily a bad thing. They may look at vitamin d levels, B12 levels, cortisol levels and most definitely should be looking at thyroid levels (TSH and T3 and T4). Also, with a drop in weight like that they should be looking at diabetes. For that, they would be testing blood sugar levels while fasting.


DS, was diagnosed with Metabolic Syndrome and put on Metformin because his body was not responding properly to the glucose in his system. It was not getting into all of the cells for energy. He is not diabetic, but is not drinking soda or juice. We are hoping to get his weight down. Although I am not happy about the diagnosis, I believe the Metformin will help him fight the Lyme better. So, it is win-win. Intertwined, but still two distinct things.


I hope this made sense, it is still pretty new to me as well.



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I'm certainly not an endocrine expert, but my son also fell off the growth chart at around age 5. He went from the 50th percentile to the second percentile by age 7. At the time our doctor didn't think it was a big deal, but I insisted we see a Pediatric Endocrinologist. The first visit was lengthy. They asked a lot of questions about his eating and sleeping habits and drew a lot of blood. We had to keep a diary of his diet for 10 days. The blood test revealed that he was IGF-1 deficient(which is the precursor to growth hormone). From there he had an MRI to rule out a tumor on or near his Pituitary gland and he also underwent a growth hormone stimulation test which took about 4 hours in the hospital. He's been on growth hormone for over 3 years now (daily injections)and he's now at the 25th percentile. The GH deficiency diagnosis preceded his PANDAS diagnosis, however we believe he has suffered from PANDAS since about age 3 or 4. I have no idea if the two are linked, but I've always suspected there must be some relationship. I recall reading an article somewhere that stated many PANDAS kids are small for their age, but other than that I have never heard of a link between the two. It would be interesting to know how many of our PANDAS kids are on the smaller side.

Edited by VickyLH
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