To Do It Or Not?

[zazuk2010]

Hi. As many of you might remember, I have twin sons (6) with PANDAS. We did IVIG with both of them last Oct with great success. One son has gotten better and better since then and is leading a life with little evidence of PANDAS. The other son did benifit, He got worse for the first week then the horrible tantrums stopped. While still often defient and quick to get upset the most extreme symptom is the anxiety. It was so bad thru the last part of the school year he was unable to attend kindergarten without me (I was allowed to be there and we got thru it) We did find out a few months ago that he had a co-infection of mycoplasma. Changed antibiotics to Bioxin then Zith and he did improve (I was able to graduated from kindergarten thank goodness). Still not to the point that his life is not greatly affected by PANDAS. Up until the last two days I was convinced he would not make it to first grade without more help. Have an IVIG scheduled for this week. Suddenly he seems better than he has been in a year. I am so confused about what to do. When we did the first IVIG we kept the kids mostly home for several months (it was flu season) and I have always felt that it helped because they were not exposed to anything else during that important healing time. I had hoped to give him a least a few weeks after the planned IVIG before he is subjected to a lot of other kids etc. If I wait even another week he will not have much time to adjust. What if he has a bad reaction and we have to have time to get thru it etc.?

 

If I don't do it now and this is just a saw tooth temporary "summer" break from this terrible thing then I fear I will run into all sorts of other problems with school starting etc. If I do it and he has a reaction and gets worse It will be hard to forgive myself for makeing a decision that will hurt him. My husband thinks we have to do it. Dr. T feels that he has a compromised immune system so we should do it (although he has never been a kid who gets sick a lot)

 

I know so many of you have seen a backlash of symptoms following IVIG for some period of time. If it turns out he really is finally better and we do it do you think it might be less likely he will have a bad reaction?

 

I can't sleep worriying that whatever way we go it is the wrong way. Any suggestions will be so appriciated.

 

Best,

Kari

[Kristy S]

If it were me, I'd do it. I really think IVIG is the right thing to do. I'm going to do it if Dr. K will let me. I don't know if you're religious, but I usually pray that God give me peace with the right decision...then if I feel good about it, I know the decision has been made correctly. Good luck with your choice, I know it's never easy where kids are concerned.

[matis_mom]

If it were me, I'd do it. I really think IVIG is the right thing to do. I'm going to do it if Dr. K will let me. I don't know if you're religious, but I usually pray that God give me peace with the right decision...then if I feel good about it, I know the decision has been made correctly. Good luck with your choice, I know it's never easy where kids are concerned.

I was extremely anxious about having ds go through plasmapheresis this week. I prayed and prayed to God asking Him to not let it go through if it wasn't good for ds... His answer was this: even though CIGNA approves plasmapheresis for PANDAS, somehow they only approved it as out-patient, so it got delayed waiting for the appeal process, as the hospital will not do it as an ambulatory treatment. In the meantime, we found out both my husband and I have strep and are having a hard time clearing it, so thank God it was delayed!

 

So if Dr. T is recommending it, your dh thinks you should do it, and everything else is lined up, go ahead and do it. If you don't do it know, it will be a lot harder to get it done during the school year. Just pray that if this is not the right thing, something will come up to show you which way to go.

 

It's never easy. I spend many hours awake at night thinking about this thing, what to do, how much to do, which doctor to go to, which supplements to give, etc, etc, etc.

 

Good luck and keep us posted.

[dcmom]

Gosh that is a rough one.

 

I am going to go against the tide, and say- is there a way you could postpone, even for a week, to see what this recent change is?

 

My kids have had some sawtooth healing, but there was never major improvement overnight that was then lost.

 

I tend to panic, but with pandas, need to remember if things are going well, trending positive, I think it is important not to stir the pot.

 

There is a very real possibility he could have IVIG and it could turn things upside down for up to 6 weeks. That is impossible to prepare for.

 

You need to go with your gut, as a mom- you know your child best. I just wanted to add my thoughts, fwiw.

[zazuk2010]

Thank you all so much. I swear just knowing there are moms out there that know what I am going thru is a God send. When I read your notes I suddenly felt like I could breath a little better. In the meantime, my boys are sleeping at my moms tonight without me for the first time (a miracle really as even leaving them to go to the market is typically tramatic since PANDAS). My dh and I have never spent the night in our house without them. It's strangly quiet. I am going to go to sleep tonight just being thankful for the small steps to recovery and maybe tomorrow I will have a clearer idea of what to do.

 

By the way fcefxer I am going to look into what you said about the lower dose. Will let you know if I learn any more about this.

 

Thanks again,

Kari