Mom_md

[Suzan]

I saw your post about your son. I am SO glad to hear he is doing so well after his IVIG. This is fantastic news. I see Dr. C on Monday. Fingers crossed that he will work with us to my satisfaction.

 

Just wanted to tell you how glad your post made me!

 

Susan

[mom md]

We really are doing great. I almost hate to even say it out loud because I am scared I will jinx it! Please keep me posted!

[P_Mom]

Sauzan...who is Dr. C? (Referred to as male, so, it can't be Cunningham) Is there another doc out there??

[Suzan]

Sauzan...who is Dr. C? (Referred to as male, so, it can't be Cunningham) Is there another doc out there??

 

Oh sorry for the confusion! Dr. C locally here is Dr. Corbier in North Carolina. He is our ped. Neurologist and our new local hopful for pandas care.

 

Susan

[nevergiveup]

Mom Md and all other ivig parents, ,

 

What was the dose on IVIG in the end? And at what point did you start to see improvement? My dd gets two grams per kg next week and I am obviuosly worried about the side effects. (And the turning back of the pages). Also any advice on pretreatment? She gets extremely bad headaches at one gram, two grams is going to be tough.

 

Thanks

[Worried_Dad]

Man, I know that feeling! But sharing the success stories really helps. Thanks for ignoring the jinx!!!

 

We really are doing great. I almost hate to even say it out loud because I am scared I will jinx it! Please keep me posted!

[mom md]

We completed day two today and he did great. He did 2gm/kg total (1gm/kg x 2 days) of Gammunex. She ordered gammuguard but the pharmacy substituted gammunex. They did it without telling the doctor so she was pissed. No harm though, he tolerated it fine. He was well hydrated and I premedicated him with tylenol, benadryl, zantac, and 20mg of prednisone. He has not had any side effects either time. Not even a headache. He came home today and played outside afterwards. His mood is unbelievable.

Last time we saw some interesting neurological things come out (movements, irritability, OCD issues) which were mild but apparent for about the first week off and on. Then from day 7-10 he was basically back to normal. His eyes were very dilated for two weeks (his sympathetic nervous system was definitely working. At 5 weeks post-tx we saw some poor impulse control issues and very rude and out of character remarks to his teachers and then 5-6 days later they were gone. He is 8 weeks post the first treatment with IVIG and we did one more yesterday and today. We follow up with two local neurologists next month to come up with a long term game plan and we see the immunologist next week. In May we see peds infectious disease here to discuss antibiotics. I will keep everyone posted on what they say. They are by no means experts but very interested in this disease.

I know the turning back the pages is hard to stomach but I think of it like chemo and hair loss...it is a tangible sign the treatment is working!