IVIG

[Doug]

We are on the 7 week mark of IVIG with Dr. K

I know that I need to let her be a kid but...

how long should I wait untill I get her more involved with other

kids that she dont play with alot..like girl scouts,dance class ect ect?

I am seeing 3 months that people are waiting she is only 5 1/2 so school is not a problem

we took her out (we had to) I hope to restart her again this year

Dr .K said just to let her go but I am just scared to do that

So what do you all think??

Thanks

Tracie&Doug

[thereishope]

I have not had IVIG so I can't give an opinion on timeframes. But I'm bumping this up so hopefully others will answer.

 

As for my son, he kept getting sick over and over for awhile so I was very overprotective of him. For my own mental health, we did baby steps. First it was meeting elsewhere (so I didn't have to worry about kids picky their noses and touching our stuff), then it was only one friend over, and now we are back to our social involvement pre-PANDAS. I still keep him away from people if I know that the possibility of illness is there and I still avoid closed in play places like McDonald's. Places that area breeding ground for bacteria.

[Joan Pandas Mom]

We decided to have IVIG. Dr. K told me this AM there isn't any recovery time with IVIG and my S could return to school immediately. Could it be because he is 15 1/2?

 

I have not had IVIG so I can't give an opinion on timeframes. But I'm bumping this up so hopefully others will answer.

 

As for my son, he kept getting sick over and over for awhile so I was very overprotective of him. For my own mental health, we did baby steps. First it was meeting elsewhere (so I didn't have to worry about kids picky their noses and touching our stuff), then it was only one friend over, and now we are back to our social involvement pre-PANDAS. I still keep him away from people if I know that the possibility of illness is there and I still avoid closed in play places like McDonald's. Places that area breeding ground for bacteria.

[Worried_Dad]

Hi, Joan:

 

I think Dr. K was just implying that the IVIG procedure itself is "non-invasive" and does not require much time for the patient to recuperate physically (vs. after surgery, for example). Worst case, the child may have headache and nausea for a day or two (although I've read a few posts where the child had a tougher time). We've had 3 rounds of IVIG with Dr. K for our almost 14-year-old, and the "recovery" from severe PANDAS symptoms during exacerbation is definitely not immediate.

 

So if your son is already managing his PANDAS well enough to attend school, he will probably be able to attend pretty soon after IVIG. Just make sure he's on high-dose abx (like augmentin or zithro) to shield him from strep!

 

Is that what you meant?

 

 

We decided to have IVIG. Dr. K told me this AM there isn't any recovery time with IVIG and my S could return to school immediately. Could it be because he is 15 1/2?

 

I have not had IVIG so I can't give an opinion on timeframes. But I'm bumping this up so hopefully others will answer.

 

As for my son, he kept getting sick over and over for awhile so I was very overprotective of him. For my own mental health, we did baby steps. First it was meeting elsewhere (so I didn't have to worry about kids picky their noses and touching our stuff), then it was only one friend over, and now we are back to our social involvement pre-PANDAS. I still keep him away from people if I know that the possibility of illness is there and I still avoid closed in play places like McDonald's. Places that area breeding ground for bacteria.

Edited April 8, 2010 by Worried Dad

[Joan Pandas Mom]

Yes, that is what I meant, Thanks. My son is managing ok to be back in school and playing lacrosse although his rituals have increased like crazy over the last 2 days. Dr. K wrote, "there isn't any down time. He can return to school immediately." I hope and pray my son isn't too old and IVIG works.

 

Hi, Joan:

 

I think Dr. K was just implying that the IVIG procedure itself is "non-invasive" and does not require much time for the patient to recuperate physically (vs. after surgery, for example). Worst case, the child may have headache and nausea for a day or two (although I've read a few posts where the child had a tougher time). We've had 3 rounds of IVIG with Dr. K for our almost 14-year-old, and the "recovery" from severe PANDAS symptoms during exacerbation is definitely not immediate.

 

So if your son is already managing his PANDAS well enough to attend school, he will probably be able to attend pretty soon after IVIG. Just make sure he's on high-dose abx (like augmentin or zithro) to shield him from strep!

 

Is that what you meant?

 

 

We decided to have IVIG. Dr. K told me this AM there isn't any recovery time with IVIG and my S could return to school immediately. Could it be because he is 15 1/2?

 

I have not had IVIG so I can't give an opinion on timeframes. But I'm bumping this up so hopefully others will answer.

 

As for my son, he kept getting sick over and over for awhile so I was very overprotective of him. For my own mental health, we did baby steps. First it was meeting elsewhere (so I didn't have to worry about kids picky their noses and touching our stuff), then it was only one friend over, and now we are back to our social involvement pre-PANDAS. I still keep him away from people if I know that the possibility of illness is there and I still avoid closed in play places like McDonald's. Places that area breeding ground for bacteria.

[sf_mom]

I wish you the best of luck with your treatment.

 

I will add that our son's recovery really took off when we kept him at the higher dose antibiotic. Since your child is older and probably much bigger..... push for being on an antibiotic that can really protect him post IVIG.