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IVIG recommended, need to hear about success/failures


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My DS12 was diagnosed with PANDAS in spring '10. We seem to be stuck in cycle where he is good for a month or two and then has a flair. He just can't seem to stay at a good place despite 2 prophylactic abx, allergy shots, singulair,and on and on for meds. The only thing that brings him out of flairs is prednisone which he has terrible side effects from but when the smoke clears he is at 95-100%. I have my son back.

It is difficult to see that no matter what he doesn't stay at 95%, he sinks back down within a month or two. So the new rec is IVIG. I'm sick of false promises of 'this will be the magic bullet that fixes it all' so I want to hear the downsides, what didn't work, etc. I certainly also want to hear if you do think it is the magic bullet and proved to be so for your child.

 

Thanks!

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My daughter is 9 weeks post ivig. I will say is that I do not regret it. It was very expensive for the treatment and the traveling but I would do it again in a minute!! While my dd has a ways to go yet, it has been the only thing that has brought healing to her. After PANDAS hit she was pretty much nonfunctional and unable to leave the house at times, IVIG is the only thing that brought my little girl back to me.

 

I wish you well as you weigh all your options.... Shannon

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I will be in the minority, but since you're looking for both positive and negative stories...HD IVIG was a very negative experience for my DS. But I know we seem to be in the minority in this.

 

Like your DS, my son could not sustain remission for longer than 2 months. We did prednisone with success, PEX helped, but nothing "stuck". He had a clear link to several strep infections and I thought he was textbook Pandas. We thought IVIG was our last option. But when IVIG caused such a horrible backslide with no positives, we went on to find lyme. Once we started treatment for the right infection, he was finally able to find long periods of 100%. But the only role IVIG played in his recovery was that his negative reaction drove us to find the lyme. Aside from that, there were only negatives for him.

 

I know others feel very strongly that it is absolutely the way to go and for some kids, it is. But I think it depends on what's driving the flair and what other issues are (or aren't) under the surface. I think you'll hear a lot of encouragement to go ahead with it, and your insurance coverage will probably be a factor. But everyone's health profile is different. My son's negatives or someone else's positives don't necessarily mean much when it comes to your son. I think your best guide is your true gut feeling on the procedure and its financial impact on you (if it's going to be a hardship, don't feel it's your only option or that you're a bad parent for not doing it). If you have some sort of hesitation, I'd listen to that. If you're posting mostly to support a decision you're already leaning toward, then I'd follow that. Best of luck with your decision.

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I agree with LLM,might help to do a Lyme test first. We did lVlG and got 70% improvement. Then she started slipping to about 60%. We repeated lVlG 4 months later. We are now less than a week after second lvlG and she slept in her room last night . Now that may not seem like a big deal BUT it IS. DD is almost 18 yrs old and is usually in our room. Seeing shifts already. we are lucky ,our insur. covered both times. Good luck!

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Well, I can say with pretty good certaintly that IVIG is not "the magic bullet that will fix everything." If it were, all of our kids would be well. IVIG is a miracle for some, helps others, and doesn't do a thing for some. There is no way to tell beforehand. I would weigh my childs state of functioning and if it is just bad, and I had given the other treatments a fair shake, I am sure I would give it a try.....knowing that I may come out with no improvement for my child. But I would be hopeful. I was in that place of what to do at one point with my younger son....I understand it is a difficult decision for so many reasons...more so for me at that point because my son was doing fairly well when it was suggested for him. Now, if he had stayed in the bad place he was in....I be running for it.

 

Also...you may want to think about the allergy shots. You will hear different things from different people/docs, but... I personally have a strong conviction that allergy shots should not be given to a PANDAS/PANS child. Allergy shots are designed to stimulate the immune system......something, in my opinion, that is the very thing that needs to be avoided in these kids. Just like illness stimulates the immune syatem and causes a falir....allergy shots would do the same thing...and it is a purposeful, aggravated stimulation. I know allergies can be bad. My older son has pretty significant allergies to dang near everything on the panel. Pollen season used to cause a facial tic. Over the years, I only treated with Zyrtec when needed and Nasonex. He managed well. This year he has taken very little meds for his allergies. It seems as he is getting older and hit puberty, they are diminishing on their own and there is no seasonal facial tic anymore. I think as the PANDAS settled, his allergies settled...makes sense to me. So, even though I have heard some docs say allergy shots are ok for PANDAS kids, I could just never do it.....so much is still unknown and it just doesn't make sense to me. Just something to consider. Best wishes.

 

May I ask who recommended IVIG?

Edited by P.Mom
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I will be in the minority, but since you're looking for both positive and negative stories...HD IVIG was a very negative experience for my DS. But I know we seem to be in the minority in this.

 

Like your DS, my son could not sustain remission for longer than 2 months. We did prednisone with success, PEX helped, but nothing "stuck". He had a clear link to several strep infections and I thought he was textbook Pandas. We thought IVIG was our last option. But when IVIG caused such a horrible backslide with no positives, we went on to find lyme. Once we started treatment for the right infection, he was finally able to find long periods of 100%. But the only role IVIG played in his recovery was that his negative reaction drove us to find the lyme. Aside from that, there were only negatives for him.

 

I know others feel very strongly that it is absolutely the way to go and for some kids, it is. But I think it depends on what's driving the flair and what other issues are (or aren't) under the surface. I think you'll hear a lot of encouragement to go ahead with it, and your insurance coverage will probably be a factor. But everyone's health profile is different. My son's negatives or someone else's positives don't necessarily mean much when it comes to your son. I think your best guide is your true gut feeling on the procedure and its financial impact on you (if it's going to be a hardship, don't feel it's your only option or that you're a bad parent for not doing it). If you have some sort of hesitation, I'd listen to that. If you're posting mostly to support a decision you're already leaning toward, then I'd follow that. Best of luck with your decision.

 

 

We also found lyme after IVIG, but IVIG did help both my boys in the meantime. Plus, I know of at least one person on this forum who's son had a horrendous reaction to the IVIG the first time, but went on to improve after multiple IVIG's. For us, even with the IVIG and PEX, one of my children just kept getting sick every 3 weeks like clockwork. Then, people on the forum started mentioning Lyme, and I decided to pursue it.

 

Here's my opinion. IVIG truly helped my children...it took a huge edge off things, and helped the immune system. Could we get that from other immune treatments (such as acupuncture, chiropractics, supplements, etc?) Very possibly. We do that now. I do not regret the IVIG treatments we did in the least. After the first treatment, my children were amazing..."arguing" over the fact that the other could go first (they were so incredibly sweet to each other, and to everyone else.) After the 2nd treatment, my older son, who is also diagnosed with Asperger's (but who I now believe was lyme/pans all along) social skills jumped 7 years...overnight!. So,no I do not regret it at all.

 

But, now I know more. I would definitely pursue the possibility of lyme (and you really, really need to see an LLMD for this, because it's a clinical dx...just because the lyme test says "false" does not mean it is false.) You should test for MTHFR gene mutation. Sometimes simple vitamins and supplements may make a huge difference, as well. We are also really targeting the immune system with chiropractics, acupuncture, supplements, LDN.

 

With PANS, there can be so many things involved: immune system, nervous system, ability to detoxify, and who knows what infections (my children, for instance, turned out to have strep, bartonella, babesia, erlichiosis, lyme, and multiple viral infections. Who would have thunked that when I started.

 

If I had to do it over again, as much as I am very, very pro-IVIG, I would certainly try ruling out lyme & co-infections (from an LLMD, not just tests), MTHFR, and other issues, and then look at adding in alternative treatments. Give yourself about 1 month to see if it helps (some may actually help instantly). Then, if it doesn't work, my opinion would be to go for the IVIG.

 

I also agree to avoid the allergy shots. Personally, I think that's like giving immunizations to these kids...their immune systems are already a mess, and expecting that it will respond appropriately to some of the allergies, is just absurd (IMHO.)

 

Good luck with whatever you decide. We are all figuring this out together, so there are no wrong or right answers.

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My DS age 8, had HD IVIG a little over a year ago. It has helped tremendously. He's pretty much back to normal. He has some minor ocd left, he smells his fingers. His social skills have returned. He no longer is angry, irritible, inflexible, and ticcing. His sensory issues have greatly improved. He still does not like loud noises and crowds but he can go places and adjust. He now has friends again.

 

He is still on daily prophylactic augmentin. Before IVIG, he could not go more than a few months w/out a flair, either. He is now seeing an alternative/biomed physician to address some methylation issues we believe are at the root of his PANDAS.

 

We would do it again, in a heartbeat, and will if he ever flairs up severely again.

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