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twoplusone

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  1. I rarely visit anymore but read this and wanted to share my son's path. His tsh is low, but T3 and T4 have never been elevated. He had a radioactive iodine uptake scan and ultrasound and his uptake was increased so he was diagnosed with Graves disease. His antibodies weren't tested until after he already had IVIG and are positive but interpreted with caution because of his treatment. So an uptake may be the only way to definitively diagnose, however, my son's endocrinologist will not treat unless his T3 or T4 become elevated, which so far they have not. As for Vitamin D you need to take 8,000iu at least a day with values that low and monitor with bloodwork. Another supplement that helps with his thyroid is leucovorin, which is high dose Rx folinic acid. PM me if you need more info!
  2. We do HD IVIG every 21 days....every case is different. You can definitely tell when his infusion is wearing off starting at about 2 1/2 weeks.
  3. You absolutely have to be on mB-12 while taking folinic so that could be the issue if you were not.
  4. I can share my observations that (in people treating their children) most people are going very low and slow. Start with 1/8th to 1/4 dose (if sensitive) only once a day, then add same small dose for the second time and alternate raising back and forth those two times a day. My son is one of the people who doesn't find it particularly calming, even though it is supposed to be and I have heard this story in others. For some, it is a miracle but even some of them had to go slow. My son couldn't take it past noon at first and now can take up until 1 without sleep disturbance. You may need to divide your dose three times a day, but my son's reaction is very dose dependent. Higher isn't better here for him, and he usually can take massive amounts of a med. I would say it puts him in a better mood, he is more even, and he is finally able to remember what happened at school, the songs they sing and the routine. My son is not really able to articulate his OCD, I can just tell when it's better and it is. I wish you luck and hope you find a good dose. Some meds aren't for everyone. GABA, taurine, and magnesium are all calming for my son.
  5. Namenda increases cognition, memory and induces a better mood in my son. Decreases OCD a bit. It is a med that needs to be ramped up slowly to find the right dosing schedule and amount. We found out my son will not sleep if he gets his second dose after 12:30 PM. I am finding that the more IVIGs that he gets, the less Namenda he needs. Currently tweaking that dose and he may only need it once a day vs. twice, whereas when he first started it you knew when the first dose was wearing off as he would start to get mean again.
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