Is IVIG the best choice?

[ZaxMom]

Is anyone out there sorry that they chose IVIG treatment for their PANDAS child? We are scheduled for our second two day treatment with Dr. L next Tues. & Wed. We did our first IVIG 2-1/2 years ago with Dr. K. Our DS 8 who was 5 at the time, immediately went into a severe flare-up. I never truly thought that the treatment helped him.

 

After speaking with Dr. L, we decided that some of our DS symptoms did eventually lessen in severity and some disappeared completely. Dr. L feels that another round of IVIG would definitely be beneficial. Since it has been almost three years, it would be like starting over. Our DS has never been completely PANDAS free.

 

Sadly, we have learned to "live with it". But as all of you know, living with PANDAS is not truly living at all. We have decided to give IVIG another try. Dr. L would also like to do once monthly treatments after the two day infusion. Has anyone had any luck with this? He has been on daily antibiotics for almost three years.

 

I was just reading a journal that I had kept at the time of his previous infusion, and I'd forgotten what a nightmare that was for my DS to go through.

 

What are your personal experiences with IVIG? Pros & Cons.

 

Thanks!

[nicklemama]

We just did #2 w/ Dr K two months ago. Both times we have seen an increase in symptoms that are not easy to live with in the first place, as in raging. Both times we have seen a slow improvement. We went 19 months between the two. Needed number two after a bout of pneumonia in early Nov.

[mpsloan]

Is anyone out there sorry that they chose IVIG treatment for their PANDAS child? We are scheduled for our second two day treatment with Dr. L next Tues. & Wed. We did our first IVIG 2-1/2 years ago with Dr. K. Our DS 8 who was 5 at the time, immediately went into a severe flare-up. I never truly thought that the treatment helped him.

 

After speaking with Dr. L, we decided that some of our DS symptoms did eventually lessen in severity and some disappeared completely. Dr. L feels that another round of IVIG would definitely be beneficial. Since it has been almost three years, it would be like starting over. Our DS has never been completely PANDAS free.

 

Sadly, we have learned to "live with it". But as all of you know, living with PANDAS is not truly living at all. We have decided to give IVIG another try. Dr. L would also like to do once monthly treatments after the two day infusion. Has anyone had any luck with this? He has been on daily antibiotics for almost three years.

 

I was just reading a journal that I had kept at the time of his previous infusion, and I'd forgotten what a nightmare that was for my DS to go through.

 

What are your personal experiences with IVIG? Pros & Cons.

 

Thanks!

[mpsloan]

I am curious as well. We just saw Dr. L a few days ago. "officially dx of PANDAS' she recomends antibiotics and IVIG. So much to take in.

but finally a dr. who "hears" me!

[tpotter]

I'm not sorry we did it (we also had PEX for both my kids.) But, both were extremely severe, and it clearly helped tremendously take off a lot of their symtoms.

 

That being said...having been at this for 5 years now (diagnosed 5 years ago, but sick a lot longer), I can honestly tell you that if you are still having flareups like this, you need to look at what else might be going on.

 

Keep in mind this is an autoimmune disorder, so these kids are susceptible to so much, and so many of our kids have way more than one infection or trigger. You really should look at viruses, parasites, mycoplasma pneumonia, staph, and lyme at the least (there are a lot of co-infections of lyme, too.) Also, is there any chance of mold in your home. Then there's gene mutations, such as MTHFR, and pyroluria, where zinc and b-vitamins are the culprit. We had no clue that any of this was going on, and my children turned out to be affected by all of the above (except pyroluria, which we haven't tested for yet), and then some.

 

The immunomodulators (IVIG and PEX) are not going to be the only thing that works if there is underlying infection, environmental problems, etc. We use supplements, homeopathy, chiropractics, accupuncture, and all kinds of things I never dreamed I would ever do with my children (and myself, for that matter), and I feel finally like we are stable. And, that's saying a HUGE amount.

 

But, again, I am not sorry we did it.

[beeskneesmommy]

We did our only one in Sept. w/ our 6 year old son. We are not at all sorry. He is still flaring when exposed, but to a more manageable degree and in between flares things are pretty good. We want to do another in the spring when school lets out. BTW, we will be at Dr. Latimer's tomorrow (Wed. 1/30) for an 11:30 appt. If you want to chat, my name is Kathy

[LNN]

I agree with T Potter - if you've never gotten back to 100%, then there may be something in the way. We found lyme, then pyroluria. It was only by treating these things that we saw lasting gains. Pex was temporary (tho I was hugely grateful for it at the time) and IVIG was a 10 week nightmare - probably because there was undiagnosed lyme. Sorry I did it - yes (I am in the minority on this), except that it led to the lyme diagnosis, so for that, I'm grateful. But I don't think the IVIG itself helped my son.

 

But if I've learned one thing, it's to listen to your own gut. The experience, knowledge and broad perspective of the doctors is very valuable. The input and support from other parents is helpful. But it's usually your own voice that has the right answer.

[ptcgirl]

My daughter gets IVIG every 8 weeks and it is a crucial component to getting her well. I say component because I don't think for mine that just IVIG would have worked. She is on abx and goes through ERP/CBT. Both of these are just as important as the IVIGs for my daughter. Also, be sure to check for Candida (yeast). It was the missing puzzle piece for my child. Given the long term history of abx use for your child, it may be part of the puzzle for you.