Jtsmama
-
Posts
64 -
Joined
-
Last visited
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by Jtsmama
-
-
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
-
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.
-
Welsh just saw your msg, that list is accurate
-
@Hayley cvid is a type of primary immunodeficiency. There are over 150. Cvid is combined variable, means there is more than one category involved.
-
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
-
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
-
That's the PANDAS prickly rash. My son gets it every time with strep.
-
Benadryl is ok daily. I take it for my allergies. So sites my Ds, knocks his insomnia self out.
-
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.
-
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!!
-
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!!!
-
I would like this list as well. We did tests with Dr T a year ago.
-
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.
-
You need to put an Iep in place to protect your child from discipline & harassment due to his medical condition. We have one with accommodations for both of my pandas kids.
-
Anyone know the dosage in the Zith study? Read it once, can't seem to find it again. My dd14 is on 250 mg, thought I read 500 was recommended.
-
MdMom...Ivig is considered standard treatment fir Cvid I thought. My son is Immuno and has been on for 4.5 years.
-
The RMH West house is the quietest. Ppl tend to keep to themselves there. The East is lively. We live in Florida & have been staying there for years. The staff are amazing, fine volunteers but some need work. If you are staying for Weeks & are going to hibernate in your room, they will check out a tv to watch videos on. If any questions ask me, I literally lived there 5 days a week for almost a year. Love them!!
-
The RMH West house is the quietest. Ppl tend to keep to themselves there. The East is lively. We live in Florida & have been staying there for years. The staff are amazing, fine volunteers but some need work. If you are staying for Weeks & are going to hibernate in your room, they will check out a tv to watch videos on. If any questions ask me, I literally lived there 5 days a week for almost a year. Love them!!
-
Another option you have is the Hospital/Homebound Program through your local School District. They send a teacher to your house a few days a week to work with your child. That is what we do with both of my children. My DS is FT with the program, my DD is PT, goes to school when she can.
-
Just completed 1st round of HDIVIG in ICU over 5 days. Ran Privigen 15 gms/12 hrs each day to prevent Aseptic Meningitis. Yes my son is one of those lucky ones! Things went pretty smooth while in hospital. Didn't have issues until 24 hrs after being home. Gave him Vicodin, Zofran, Benadryl then added gobs of Prednisone to the mix, that seems to be keeping it under control.
The Neuro took my son off of his abx, Clindamycin, for the time being, to see what results we gain from the IVIG, and how soon we need to do it again. Anyone do anything similar to this? How soon after IVIG do you see changes? How long do they last? We have seen changes in him already: major tics have disappeared, his irritability is gone, he is snuggly, doesn't mind being touched, less sensory, HAPPY, much calmer. Amazing differences! So glad that we finally were able to do this!
Jt also is infusing SCIG Hizentra weekly 6gms...anyone else doing HDIVIG and SCIG?
-
Just did 2gm/kg of Privigen this week for the 1st time. My son is also Immuno, on SCIG weekly
-
Hizentra is weekly ivig given subq, small doses to keep the Igg levels from dipping & spiking. The total monthly dose is only equal to 0.5g/kg, which is the recommended dose for Pidd patients. HdIvig would probably be the product Gamunex.
-
Neuro & Immuno have finally agreed ds needs HdIvig, abx are no longer the fix. Because he is Immune Deficient, already infusing Hizentra 6gm/wk. Dr recommended staying on Hizentra & infusing HdIvig at 1.5gm/kg every month. History of aseptic meningitis with Ivig at low doses, thinks this might prevent this from happening. Anyone else infusing this way? I called docs, centers, ivig providers, insurance..etc. No one has ever heard of this! Also what do you bill under? Any info greatly appreciated!!
-
Can you tell me what code? We are applying for it now...
infectious disease doctors?
in PANS / PANDAS (Lyme included)
Posted
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