How long after IVIG are the kids "good to go?"

[tpotter]

Both my sons are getting ready to have IVIG with Dr. K. One is scheduled at the beginning of July, and the other will not have it until the beginning of August, hopefully, because he has a summer program at one of the universities that he doesn't want to miss. But, we have a family vacation scheduled at the end of August (the last week of summer break,) and I really don't want to cancel it.

 

My younger son had IVIG last year with Dr. L, and he was "good to go" within a week. But, I keep reading everyone's posts that allude to the fact that they have problems for weeks/months afterwards.

 

My older son will be getting the IVIG approximately 2 weeks before the trip, if all goes well. What do you all think? Do you think this will be a good idea? I don't want to wait until school starts, because he will be a HS senior, taking a bunch of honors, AP, and even 1 college course, and he can't miss school.

 

What would you all do?

 

Thanks.

[norcalmom]

I'm wondering the same thing. I think we may be doing IVIG, and want to try to do it before school starts up (to avoid all the germs) but we also have a vaation house we've rented, and a 2-week camp scheduled (a very expensive camp that he's begged to go to for the past 3 years)...I am sure some thing will have to go.

[Doug]

Our dd had IVIG with dr.k 18 weeks ago and still doing great

But,3 day's after we got back home she caught H1N1

So we kept her away from as many people and inside for about 6 weeks

BUT it was still winter and she is only 5

I know Dr.k said that she was good to go and do whatever she wanted to do

but when she caught H1N1 we changed our minds..

Why 6 weeks?? we just felt like it just gave the ivig more time to work

without catching anything.. but that was just us being parents

She was living mostly in a bubble anyway

so she was use to us keeping her away from other kids

But as of now I can't keep her inside at all

and our ture test will be getting her back into school

and staying there

 

Tracie

[tpotter]

Thanks for your insight.

 

Trudy

[P_Mom]

Tracie...any increase in PANDAS with H1N1???

[Doug]

Tracie...any increase in PANDAS with H1N1???

No thank goodness!

[bubbasmom]

My issues with IVIG are not so much how long afterward do you see full recovery. Its the fact that both times my son has had IVIG he has actually gotten WORSE immediately following for about 3 weeks the first time, 2 weeks the second. The first time 'full' recovery took about 6 weeks, the second time only less that 3 weeks before we were good to go.

So confusing to everyone and I think its so different for every child. Just like with a cold, some kids get different symptoms, and different meds work for different people. PANDAS varies so much.

GOOD LUCK.

[tpotter]

Thanks for the good luck wish.

 

Also, yes, after H1N1, and after really any time my kids get sick, they do have an increase in PANDAS symptoms. That's why we're now doing IVIG.

[Stephanie2]

Personally, I would rather deal with the IVIG side effects while on vacation than sending my boys off to school like that. You make a lasting first impression on the teacher in August/Sept, ya know? But that is just my preference, everyone is different, everyone here is dealing with different severities of this disease. Also, as I have found with my boys, they both respond so differently to treatments. I am planning to possibly do IVIG for both sons this summer, as well. It will be intersting to see how they each respond.

 

I know with the one IVIG tx we have done so far with ds5, he did get worse for 3 weeks then we saw a sudden drastic improvement at 3.5 weeks (1 mg/kg). Next will prob be higher dose.

 

Best of luck and keep us posted!

 

Thanks for the good luck wish.

 

Also, yes, after H1N1, and after really any time my kids get sick, they do have an increase in PANDAS symptoms. That's why we're now doing IVIG.

[tpotter]

Thanks. I will.

[Joan Pandas Mom]

We did IVIG 4 weeks ago. My son is still doing a ton of compulsion and I'm happy we have the summer to see how things go. I know how you feel with having to let some things go. It has been so long dealing with this and I'm finally realizing I just have to say no to some things until he is better. Good luck and please keep us posted.