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Jtsmama

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About Jtsmama

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  1. Most Ids are not pandas friendly!! We have seen 6. Sounds like reactive arthritis, ask your rheumatologist about the possibility of that. Did you come back positive for hla-b27? We all have that & arthritis
  2. Cobbie, what state are you in? Who is the Immuno? I know a few of them from conventions. Go with the Immuno diagnosis if you have that. Then approach them about the Pandas. Most are not receptive to it. Fyi. You cab pm me if you want. My kids are both Immuno. One on ivig for years
  3. My son was on Risperdal & developed tardive dyskinesia, you thought normal tics were fun. Thus was mind blowing horrible to get rid of, we just had to wait. Made him psycho, all of those kinds of meds made him psycho. Abilify made him suicidal. I wouldn't do it, ever again. Dr M prescribed all of this, why I will never know. Antibiotics my son, has always responded to. Now Ivig. My daughter was on Wellbutrin and anxiety meds, same issues, weaned her off once we figured out she was Pandas. Now on antibiotics, much better.
  4. @Hayley cvid is a type of primary immunodeficiency. There are over 150. Cvid is combined variable, means there is more than one category involved.
  5. Sorry it took so long! I don't Ching on acn much. My son does scig weekly did his immunodeficiency because he gets aseptic meningitis from ivig. We do the scig weekly to keep his base levels higher, fewer reactions. He doesn't have the dips & spikes. When we started high dose Ivig for pandas, we were already doing it weekly felt that was the best option. He gets 1g m/kg every 4 weeks of Privigen
  6. Sorry it took so long! I don't Ching on acn much. My son does scig weekly did his immunodeficiency because he gets aseptic meningitis from ivig. We do the scig weekly to keep his base levels higher, fewer reactions. He doesn't have the dips & spikes. When we started high dose Ivig for pandas, we were already doing it weekly felt that was the best option. He gets 1g m/kg every 4 weeks of Privigen
  7. Any luck on getting a list of tests suggested for PANS?

  8. That's the PANDAS prickly rash. My son gets it every time with strep.
  9. Benadryl is ok daily. I take it for my allergies. So sites my Ds, knocks his insomnia self out.
  10. Its been a long while since I have posted. My DS12 has the Gtube, refuses to eat, also Immune Deficient. Has been battling PANDAS for many years. I just wanted to give other families a glimmer of hope. My son was on high doses if Clindamycin prior to starting HdIvIg in July. It was not working. After 6 months of Ivig, my Jt is motor Tic free! Coprolalia hasn't left yet. Darn. He is happy, playful, sarcastic! Able to do schoolwork. The fog has lifted. The most important part, he is eating!! For the first time, in 2 years! Has maintained his weight with no tube feeds over the last month. This is a miracle. He has grown several inches, now taller than me, and stronger. For all the parents out there struggling, I was there, I still am. I have a daughter that was diagnosed 6 months ago, that has been sick for over a year now. THERE IS HOPE!! YOUR CHILD WILL BEAT THIS!! Ivig for him was a "abx are no longer, lets see if this does" option. For all the naysayers out there, IvIg is a viable treatment option, it saved my child! A year ago, he tried to kill himself....in a few days, he will be opening Christmas presents with a joy this year, instead of rage. I would like to wish everyone a Merry Christmas. A special thank you to DrT for pointing us in the right direction. And our special Angel on Earth Dr Carl Barr, in Orlando, without you, we would be lost.
  11. My son also has Pidd, is doing Scig weekly, Started Hdivig monthly, just had his 6th dose last week. We have to do both because of complications, but it works for him. A whole new kid!! Definitely a miracle!!
  12. Unfortunately, these are all side effects of the IVIG, its worse with High Dose. My son has it happen everytime, with every infusion. What premeds and postmeds did they administer? Our trick seems to be lots of fluids prior and after each day of infusion. High doses of Solumedrol, Vicodin, Benadryl & Zofran. He goes home on a Medrol Dose pak each time. This has seemed to control most of the headaches, etc. We do medicate with Vicodin and Benadryl as well post infusion. We have completed 4 HDIVIGs since July, feel free to pm if you have any other questions. He is due to be infused again this weekend. Hope she feels better soon!!!
  13. I would like this list as well. We did tests with Dr T a year ago.
  14. Allergies definitely have an impact per DrT. Both my kids are now on Immunotherapy, allergy shots, due to severe allergies. Big difference. The last month no shots due to doc & our issues, both kids are struggling & have strep again. Major sinus problems. Also my son was taken off of Singulair by Dr M, she says it increases the Ocd.
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