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Everything posted by T_Anna

  1. Not sure, but we just had IVIG today (our 4th) and we have never given Tylenol. I believe you can ask the nurse to give ibuprofen. T.Anna
  2. Dr. Cunnigham's last study was conducted with Tel Aviv University. There must be a push for research there as the CNN Dr.Gupta Cannabis documentary also focused on a farm there. What does it mean if my DS's d1 and d2 were in the average? Our camKinaseII was very high at 209. T.Anna
  3. <<Is he going to be on propanolol long term, or is that a short-term treatment?>> We'll see, we haven't re-run the TSH numbers in a while, so cannot see if it's helping. Overall,somethings seem to be helping since we returned from the hospital and PEX. Since the PEX itself didn't seem to be a rest for us, maybe it just cleared things up so that these treatments are working (IVIG, Steroid, abx, anti-virals, propranolol, etc). By working I mean seeing more of our son and better attitude, everything else is still ruled by severe OCD. Today, the school's psychologist is coming
  4. I'm thinking it might be a combination. I definitely see him pull, but it also started after we added beta blockers for his thyroid issues. I took it down by half so we'll see if that has an impact. Having another HD IVIG tomorrow. Thanks all!! T.Anna
  5. We had TPO of 32, but the thyroid antibodies and SED and ACE rates were VERY high. T.Anna
  6. Irfan have you ever used a product like a Gaia Thyroid Support? T.anna
  7. Thanks Susie, he is also on Diflucan (fluconazole), but he has been on that much longer. It really could just be from the pulling, but DH observed that it seems really easy for the hairs to come out. T.Anna
  8. DS15 has been doing a tiny bit better (still far from functional), in the past month (month and a half) he has been twisting and pulling out hair, Trichotillomania, he now has a huge bald spot (like a balding male adult) on the top of his head. Is this a result of the meds? Plain anxiety (do they pick out SO MUCH hair?)? Nutrition? He just sits there and picks out hair, it's driving me crazy. As many strides as we've made forward this is really pushing my buttons. We added propranolol about a month+ ago for thyroid. I just saw that it can cause hair loss (rare side effect), doctor said hal
  9. No to MTHFR. We are in NY, so definitely a possibility, but even integrative doc thinks we'll have better luck first attacking on the AE front. T.Anna
  10. In the last radio pandas they discuss a study where Alzheimer's patients are given IVIG. T.Anna
  11. For example: Doxycycline was 200mg a day (prob should have been double) Azithromycin was 250mg a day (should have been 500mg as we did later with Dr.S). T.Anna DS is 5'6" is about120lbs
  12. I am listing our mistakes, because maybe this will help someone starting on the crazy PANDAS road. Since we have approached our 1 year anniversary, here's an overview of DS's (15) trek thru PANDAS #%^. MISTAKES: 1. In the beginning (November to January) We only did 10 days abx and antivirals instead of 30 days or more. 2. We tried SSRIs and created more rage as we upped dosage 3. We went to IVIG before being on abx/antivirals consistantly 4. Doses always started conservatively 5. We didn't know that we should ASK for higher & longer doses. 6. We blindly trusted our CBT therapi
  13. Hi PowPow, I hope I didn't make it sound better then it is. After the blood tests came back with Hashimoto's Encephalopathy and elevated SED and ACE (markers for Neurosarcoid), we decided to try another oral steroid burst, this time at 80 mg a day. He did well, he was in a better mood, able to discuss school and illness a bit (usually a taboo subject) and not fatalistic. We re tapering down now and it's still going well. And after this week's IVIG we hope to do an IV Steroid. Unfortunately, I still haven't found anyone in the area willing to treat this in a hospital setting. The doctor w
  14. Tu4four, recently they are finding that more and more severe PANDAS cases are testing for elevated ACE, SED and even Hashimoto's encephalopathy. My DS has been stuck in severe OCD since last Fall. Since last January we have treated with IVIG, PEX, abx and antivirals. Everything has brought him microscopically back to us, but he is still home bound and stuck. We are starting to treat this as AE and we have seen more of our son lately (past 2.5 weeks). The steroids have made a difference too and we hope that the IVIG this week will also help. We have added an integrative doctor who is also
  15. I certainly hope he is wrong. There are many here that are seeing success in older children with monthly IV steroids an monthly 1gram IVIGs and sometimes immune suppressants like CellCept too. My son also prob had this for years and we didn't notice until a year ago. We haven't been cured with PEX, IVIG or abx, but they have all helped, so we hope we will get him all the way back. T.anna
  16. So the ped would prescribe abx for all the kids if one tested + for strep? And for 30 days? Just curious as we seem to attend Strep Academy : / T.Anna
  17. We did it at home all three times. I spoke to a few doctors and a friend whose father had IVIG as part of his cancer tx. DS doesn't have asthma or any other complications so we felt secure having it done at home...especially since DS won't leave the house. T.anna
  18. Anyone else done the hair test? Due to trictollomania, hair test is an easy for us. T.Anna
  19. Qannie, I am so sorry about your experience. As if it's not hard enough to have a child who is suffering (no matter what the reasons), that there are institutions full of medical professionals without compassion is terrible. Living in NY, I think the hardest thing for friends/relations to understand is that there isn't some nice shiny hospital with a fancy name that WANTS to help our children. I constantly get calls of "you need to call my guy, he's so smart and I'm sure he knows all about this." Hugs, keep strong and be thankful for the rogue doctors who understand and want to help.
  20. Great video, thanks. Wish me luck. I'm going in without a real plan, just want to hear what they have to say and what options are available. Thanks for all the input! T.Anna
  21. DS is enrolled in a private school, so they have some flexibility as far as curriculum. Would it be better to hire my own teacher to come in and teach him a subject, i.e. math (his favorite subjects were math & science)? I'm sure NYC has a few options and he qualifies medically, but I don't want a history teacher when we should probably start with math (that's one of the few cumulative subjects). Thoughts? T.Anna
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