Cured response in IVIG Pool

[P_Mom]

Could the two people that declared their children cured from IVIG PLEASE chime in and tell us your story! We would all LOVE to hear about it!

 

Kelly

[Stephanie2]

If I remember correctly, I think I voted that my ds5 has had a 50% improvement and I consider that a cure! LOL! Both of my children are quite severe (also had/have ASD issues). So a 50% improvement for either of my boys is a miracle in my book. But let me explain...

 

As many of you know, recovery is not always cut and dry, a straight and narrow path. And neither is it permanent for many. I kind of look at it like diabetes, needs constant management with multiple drugs/interventions. I am constantly checking my sons' "sugar" by watching their behavior and intervening at the first sign of pandas relapse.

 

My ds5 had IVIG (1.0 gr/kg) late March. It seemed to have kicked in at 3.5 weeks (but still not certain how much my increasing spironolactone plays into that). At that time there was a sudden, dramatic improvement in OCD and a decent improvement in tics. Then a few weeks later he had sudden onset pandas symptoms coupled with fever, sore throat, etc. I immediately increased his zithromax for 5 days. During that time he went back to baseline, but baseline improved!! His tics were 99% gone!

 

After the 5 days of zithro, he started to slip, so our DAN practitioner put him on 30 days of tx-dose augmentin. His symptoms remitted again, but not like when he was on zithro. He had some tics and some hyperactivity (you may call me picky, but I am a 100% kind of girl!!). I called our DAN and asked to do a steroid burst. The steroid brought an immediate, full remission of symptoms. On day 4 (first day off steroid) I started holding my breath, as you can imagine. Now one week later, he is still holding strong and has full remission of symptoms (OK, 99% remission. He still has a few strange verbalizations in his room as soon as he wakes up before he comes out, but only lasts about 30 seconds...whatever, ya know?).

 

He is really amazing right now, better than I have seen him in about 1.5 years. Not to mention, my husband has been out of town and my 2yo has been ina terrible exacerbation (which I think he is coming out of as we speak), and my ds5 has been helping me manage my crazy ds2!! I mean seriously helping me!! Never thought I would live to see the day!!!

 

When my husband left town (Jan 29) my ds5 had pandas, yeast, klebsiella (which was making his psychotic/aggressive). He was a complete mess and we thought for sure he would end up having to go to a special school for kindergarten. My husband is coming home today (after 5 long months) to a whole new child!

 

BTW, in the time since IVIG, he has learned to add and subtract and sound out 3 letter words! His grandparents say that he is a whole new child and his teachers are amazed at the progress he has made (even socially with the other kids). I can finally say that he is academically and mentally/emotionally prepared for kindergarten!

 

I do realize that he could slip at any moment and we will gave to go backt o IVIG, but I am so much better at managing his symptoms and getting on top of it the moment things start to slide. We have such a great/accessible physician assistant that we work with who has 2 pandas boys of his own. I am finally feeling very optimistic about my sons' futures...

 

Hope that helps!

Stephanie

 

Could the two people that declared their children cured from IVIG PLEASE chime in and tell us your story! We would all LOVE to hear about it!

 

Kelly

[P_Mom]

It is always GREAT to hear good news about PANDAS kids...always! I hope it continues for you, Steph!

 

So, just to clarify things...were you one of the people that voted cured?

[Doug]

We diden't vote ivig as a "cure" as of yet

but at 17 weeks post ivig it is looking good

for our dd but as we all know that can change

in the blink of a eye..

I am not sure there is a "cure" but ivig could be a very good treatment??

at least for us it has been.

[Fixit]

it may well be...

how old was your dd again...

i think it was pacific dad... ..did ivig 1 time for his child and no relapses and its been 2 or more years...i think...

lets put out the good vibes for your daughter too!!!

[Stephanie2]

No, I did not vote cured...just 50% improvement (actually I think it was more like 80% within 4 weeks).

It is always GREAT to hear good news about PANDAS kids...always! I hope it continues for you, Steph!

 

So, just to clarify things...were you one of the people that voted cured?

[P_Mom]

Bump.

 

Sorry , guys, But I would really like to hear from the people on here who have cured children! They must be on because it did not take long for them to answer the pool. If my child were cured (in the true sense of the word) from IVIG, I would be shouting it from the rooftops and helping other people out by doing so. It would really help to hear the stories! I know, at the crossroads I am in right now regarding IVIG....I really need to hear it.

 

By the way....to those that mentioned I just ask Dr. K, well, I did....he responded..... "yes", he still holds by his claim IVIG is a CURE! Complete and lasting CURE of the condition.

 

Kelly

[Doug]

it may well be...

how old was your dd again...

i think it was pacific dad... ..did ivig 1 time for his child and no relapses and its been 2 or more years...i think...

lets put out the good vibes for your daughter too!!!

She will be 6 this month

I hope 1 ivig will do it.

but noe we have some dental work

that she needs done..

so we need to watch that

it never stops!!

[P_Mom]

Bump again.

 

I am becoming suspicious of the "cured" responses since no one wil come on here and fess up to placing those votes and tell us their story!

 

Sorry, everyone! I just REALLY wanted to hear about it.....don't we all??!!

 

I'll leave it alone now........

[amy s]

Bump.

 

Sorry , guys, But I would really like to hear from the people on here who have cured children! They must be on because it did not take long for them to answer the pool. If my child were cured (in the true sense of the word) from IVIG, I would be shouting it from the rooftops and helping other people out by doing so. It would really help to hear the stories! I know, at the crossroads I am in right now regarding IVIG....I really need to hear it.

 

By the way....to those that mentioned I just ask Dr. K, well, I did....he responded..... "yes", he still holds by his claim IVIG is a CURE! Complete and lasting CURE of the condition.

 

Kelly

 

I don't know what post you are referring to but anyway, I thought I would jump on here and say that I don't consider my dd 'cured', although she is 19 months post IVIg and doing great. I am constantly in fear of things going bad again.