One month post IVIG

[greeneyes48072]

Hey all, just posting for those considering IVIG or those who have done it and want a comparison. Sorry, I haven't been checking the forum that much lately, just tired out. Ok, so as of yesterday he is still ticcing every day, almost from the moment he wakes up. He is down to one primary tic, but it is the most intrusive one, his yelling loud talking...about every third word when he talks comes out in an ear piercing scream. The nose sniffle seems to be gone, saw it maybe once yesterday and the asthma like gasp seems to be gone. He seemed to have a few facial tics, but nothing continuous. He is very frustrated because of the screaming tic...he feels like he's not getting better. I'm feeling discouraged myself, but I know it can take time (thank you again for the pep talk Diana). He is still somewhat moody, but not AS nasty as he was a month ago. Not too hyper, but still super sensitive and emotional. Crys and gets hurt feelings from almost anything. He is still having trouble falling asleep and sleeping alone. The frequent urination is gone. I think that covers most of it. Dr K says that it is not considered a failure until the 12 week mark, so we still have two months to hope for good progress. I also heard from a parent that the healing can continue beyond that 12 week mark, and that it still may not be a failure even if we don't see the progress we hope for by that time...

[dee45]

Hi,

just a quick question. After IVIG are children on antibiotics or is everything stopped hoping the IVIG will eliminate the tics, behavior etc?? I do hope your son gets better hopefully you will see more improvement over the next few weeks. I appreciate you sharing your experience . I hope today is a good day.

 

Deanna

[P_Mom]

Deanna,

 

Dr.K, if you get IVIG from him, keeps his kids on preventative antibiotics for atleast a year post IVIG........some parents stop after the year mark...some feel they need to continue with it. I know I was told by Dr. Latimer that my kids will be on antibiotics "until PANDAS is a distant memory."...whether they get IVIG or not. Unfortunately, there is no set way to treat this yet, nor is there a universal response from our kids....it is all different.

[thereishope]

Hey all, just posting for those considering IVIG or those who have done it and want a comparison. Sorry, I haven't been checking the forum that much lately, just tired out. Ok, so as of yesterday he is still ticcing every day, almost from the moment he wakes up. He is down to one primary tic, but it is the most intrusive one, his yelling loud talking...about every third word when he talks comes out in an ear piercing scream. The nose sniffle seems to be gone, saw it maybe once yesterday and the asthma like gasp seems to be gone. He seemed to have a few facial tics, but nothing continuous. He is very frustrated because of the screaming tic...he feels like he's not getting better. I'm feeling discouraged myself, but I know it can take time (thank you again for the pep talk Diana). He is still somewhat moody, but not AS nasty as he was a month ago. Not too hyper, but still super sensitive and emotional. Crys and gets hurt feelings from almost anything. He is still having trouble falling asleep and sleeping alone. The frequent urination is gone. I think that covers most of it. Dr K says that it is not considered a failure until the 12 week mark, so we still have two months to hope for good progress. I also heard from a parent that the healing can continue beyond that 12 week mark, and that it still may not be a failure even if we don't see the progress we hope for by that time...

 

 

Did he have a sudden onset of tics as a result of PANDAS or did he have any that were already present and just worsened?As for him being super sensitive and emotional, well, that is hard symptoms to assess. It must be frustrating for him and that could be why he is still having the high emotional responses. That could also spiral into why he still needs comfort at night. It sounds like you've seen some progress so that's a sign of hope. Don't give up that hope!

[greeneyes48072]

About the abx: Yes Dr recommends for at least a year after...but we plan to continue past that.

 

About the tics: Sudden onset three days after a Strep Infection. No signs prior, though in hindsight, we think there may have been a prior occurance, just not noticeable (we get strep once a year in this household-have always ran to the dr at first sign). Tics have continued constant since that sudden onset in Nov '08.