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Any success stories with IVIG


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Still dealing with my dd 12 having PANDAS. ABX no longer work. Has anyone had any success stories with IVIG that they wouldn't mind sharing? I keep reading and talking to others who have kids doing it but it doesn't seem like any of them are really cured or in full remission. Please share your story with me if your child is better due to IVIG treatment. It seems to be our last hope....

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Absolutely better after IVIG. I'll try to keep this brief and concise.

 

Had symptoms of PANDAS for 1.5yrs, w/ the last yr having every symptom in the book. It was awful. It seemed severe to us, but he could go to school and function. At home and socially, it was a nightmare.

 

Started w/ OCD, anxiety, severe separation anxiety, sensory issues, sleep disturbances, etc... then developed tics. Mild symptoms started after a double ear infection and then abated. Had FluMist about 9 months later and he had overnight severe exacerbation. Remitted. Came back after another double ear infection. No remittance. Finally diagnosed. Abx for 7 months. Improved about 70%. After IVIG 10 months ago, we saw 90% improvement. Had flairs while sick this winter and reacts to strep exposure.

 

Had allergy testing. Started allergy meds about a month ago. He's about 95% now. Doing better than we ever hoped for.

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Hi again,

Sorry so brief last time, but I was on way to work. My ds8 had ivig almost a year ago now. I wouldn't say he was constantly debilitated, but had mostly motor and vocal tics, some mild OCD, bed wetting, and separation anxiety.

 

He was diagnosed last spring and our pandas doc highly recommended ivig, so he had it in June. Within a few weeks we saw a huge improvement which kept improving over time. Honestly I feel it was one of the best decisions we ever made as it gave us our son back!

He was at 100percent untill he caught pneumonia and then we saw a rage flare, but we treated with abx and he was fine.

My husband and I decided that we would not wait until he was severely debilitated to treat him as his quality of life was not all it could be and we are very happy we did the ivig. I would not call it a cure as he still has flares after illness, but it is treatable with abx. He also did not have Lyme or co infections which I think can complicate things, but not sure.

 

Anyway, I know this is a Debatable topic on the forum, and I can only tell about our own experience. I am sure everyone has different experiences or feelings about the subject.

Best of luck to you and your family!

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Us too--IVIG made a world of difference. Our d had been doing alright with abx for about a year--then was exposed to strep during a playdate.

She started to flair with obvious OCD, dropped from A's/B's to D's and F's..School declared her ungrade-able. The OCD then morphed into SEVERE ODD. We spent time battling insurance and finally, after about 9 months of brutal OCD/ODD she had IVIG. Literally, within the first 48 hours she could be in the same room as us, looked at me and said "I feel happy again Mama"...(she had been so violently ODD that she had to stay with friends for the month prior to IVIG. Yes, IVIG made a tremendous difference--and continued to 'bring her back' for the next 6 months--

 

School work was a complete turn around. Some blips of OCD/ticcing when she has been exposed to others being ill (especially strep once in school!) But NOTHING like it was--and she is herself again. I only wish we had done this for her earlier--it was life changing.

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patric--how long had your ds had symptoms prior to IVIG? Can you share what doc did IVIG with a child with predominantly tics and not debilitated??? Thanks!

 

Hi again,

Sorry so brief last time, but I was on way to work. My ds8 had ivig almost a year ago now. I wouldn't say he was constantly debilitated, but had mostly motor and vocal tics, some mild OCD, bed wetting, and separation anxiety.

 

He was diagnosed last spring and our pandas doc highly recommended ivig, so he had it in June. Within a few weeks we saw a huge improvement which kept improving over time. Honestly I feel it was one of the best decisions we ever made as it gave us our son back!

He was at 100percent untill he caught pneumonia and then we saw a rage flare, but we treated with abx and he was fine.

My husband and I decided that we would not wait until he was severely debilitated to treat him as his quality of life was not all it could be and we are very happy we did the ivig. I would not call it a cure as he still has flares after illness, but it is treatable with abx. He also did not have Lyme or co infections which I think can complicate things, but not sure.

 

Anyway, I know this is a Debatable topic on the forum, and I can only tell about our own experience. I am sure everyone has different experiences or feelings about the subject.

Best of luck to you and your family!

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About 15 months - symptoms prior to IVIG.

 

ABX worked at beginning, ds established new baseline (better than before) and then he would catch a cold and have an eacerbation- but the reason we got hte IVIG was because his baseline when not in exacerbation was getting worse and worse.

 

Had virtually every pandas symptom to some extent when in an exacerbation -tics, sep anxiety, decline in work, irritability, ocd, body dysmorphism (slight), nightmares, frequent urination, bed wetting, insomnia, nightmares, obsession with death) . BUT - he was surprisingly high functioning. Missed some school, but only a handful of days over that year.

 

IVIG was the best thing we did. We did 2. Second one about 9 mos after first, after I could see him sliding back again. Since IVIG #2, we found mycpoP and are treating with different antibiotics (treating for Lyme too -test results equivocal, but similar to mycpP treatment and I figure since mycoP common in Lyme patients, he may have Lyme. Working very well. No exacerbations since last IVIG and new antibitocs. Still has instusive thought -OCD, and some irritability/inflexibility, but that is only symptom. May be what we are left with after 3 years of this just started some very, very low does SSRIs. I'm glad I waited until now for that. I don't think they would have done much of anything in exacerbation!

 

Good luck. It was a VERY stressful decision to do the first IVIG. The second time was soooo easy to decide.

 

The only thing I would do differently is we would get steroids a couple days before IVIG and a few days after. My son has horrific response to the IVIG (splitting head ache and nausea for days following).

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Thanks for sharing your stories! Surely there are more out there. Maybe I should have asked share you Ivig experience????

I am in the minority but my DS did not respond well to IVIG. Had 10 weeks of horrible increase in symptoms with no benefits. I kicked myself because I always had reservations about IVIG for my son. Something inside made me very cautious and we avoided it for a long time. The one upside was that his poor response led us to a lyme/bartonella diagnosis and subsequent treatment. This eventually gave him a 5+ month complete remission. He caught what was likely strep last month (didn't get him tested) and he did have a Pandas flair, but it was a 2-3 vs. previous episodes of 9-10. He is now 99%.

 

So my only point is that every kid is different and unfortunately, no one's response will let you know what sort of response you may see in your own child. If you feel it's worth trying, there are many stories to support that decision. If you have reservations, there are other ways to get to health. I think you have to listen to that voice inside and trust your instincts.

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