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Does anyone regret doing IVIG?


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As all of us do...i am planning 3 steps ahead.....

 

we are closer to doing ivig.....does anyone REGRET...doing ivig or the other procedures and why?

 

Postive aspects....helps with allergies...relief in or remiison in ocd/tics...

are there more positives i am missing.

 

Did anyone do these procdures...regret it....no postivie outcome....came to the conclusion that it needed to be repeated and then had a positive outcome???

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I am one of those parents who is trying to heal and have purposely limited my time on the forum. I have been extremely worried for our son and found it even harder to go to bed nightly worried about everyone else's child too. I do plan to share our story on regular basis and be very specific about our choice of treatment to help others and hopefully provide hope in the future. I will be forever grateful for those who shared their stories and provided hope and direction for our family.

 

Currently, our son is 98%. I am uncomfortable claiming 100% until we are much further out from any IVIG treatment or symptom or perhaps 'jinxing' our current recovery process.

 

Our son has had 3 IVIG treatments, 2 m.g./kilograms over two days. Primary presentation: TICS with mild OCD. Sudden on-set June 24th, 2009 (probably sick 1 1/2 years prior and didn't realize it was PANDAS). First IVIG treatment Sept. 2009 and each succeeding treatment approximately 8 weeks apart. He is currently 12 weeks out from his last treatment.

 

WE HAVE ABSOLUTELY NO REGRETS.

 

 

 

 

 

 

I was also interested to see replies to this. I guess that no replies means that no-one has regrets - which is great news!
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So far so good!!!!!...i would like to see this thread drop off the face of the earth

maybe rebump it once or twice to make sure.

 

GOOD BYE THREAD!!!

 

 

 

As all of us do...i am planning 3 steps ahead.....

 

we are closer to doing ivig.....does anyone REGRET...doing ivig or the other procedures and why?

 

Postive aspects....helps with allergies...relief in or remiison in ocd/tics...

are there more positives i am missing.

 

Did anyone do these procdures...regret it....no postivie outcome....came to the conclusion that it needed to be repeated and then had a positive outcome???

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No regrets. We may have to repeat IVIG as we did 2gm/kg in August and have a recent exacerbation which we're hoping will be controlled with increased Azith and 5 days of pred (we just finished that). But, definitely, it helped and would do over if needed.

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EAMOM,

 

I am bummed out to hear of your daughter's recent increase in symptoms. Can you elaborate?

What do you think it was from? How bad is/was it? Prednisone working yet?

 

Thanks! Hope to hear of a speedy recovery!

 

Kelly

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Currently regret it, but too soon to look at the 'big picture'. My son, who is 13, had it 3/22. Prior to it his symptoms were good for a week or two but we went through with it anyway. Two days following all of his symptoms returned. Back in the fall there was a lot of people talking about saw tooth healing, and maybe that's what we're seeing. But this increase in symptoms blindsided me. Maybe had I know I would been better prepared.

Following his first IVIG 10/27 we had from 12/10 until 2/10 fairly good.

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Currently regret it, but too soon to look at the 'big picture'. My son, who is 13, had it 3/22. Prior to it his symptoms were good for a week or two but we went through with it anyway. Two days following all of his symptoms returned. Back in the fall there was a lot of people talking about saw tooth healing, and maybe that's what we're seeing. But this increase in symptoms blindsided me. Maybe had I know I would been better prepared.

Following his first IVIG 10/27 we had from 12/10 until 2/10 fairly good.

 

So, it took about 6 weeks after the 1st IVIG to see improvements? Was he in exacerbation when you did the 1st one?

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I havn't had this for my son, but I'm going to chime in here....

 

I'm not sure if asking if anyone regrets it, is going to solicit the responses you are looking for, but I understand what Fixit is trying to get a sense of here.

 

Again, I can't answer that question because we hve no experience, but just judging from all the reading here, I see it helps some, but some obviously not have such a great time at that dance. ... my feelings?.....and take them for just what they are, 'my' feelings......but I do think anyone doing research for pandas treatments and such, should make sure they know what the possibilities are and weigh that all in. too many variables, here, and I don't care if there are many who have benefited, not ALL do. If there are side effects to contend with, however long they may last, and especially if one of the effects is having a young child who wants to die or is threatening their own life, well, that possibility should certainly be taken into consideration......I am frightened and amazed at some of the recent reports, not to mention past ones.

 

I know someone here is probably gonna beat me up for putting out these thoughts, but I think everyone's opinions, fears, and doubts should be entertained. I'm not saying IVIG is not a good thing, if I had a child with severe symptoms, I would probably go for it more readily, but I guess I am just wondering if it is the right thing for those with more manageable symptoms. I have up til now, even refused meds for my son for just that reason, don't want to deal with any side effects or possibly having the drug bring about new problems or even alter his brain metabolism (if that makes sense)......things are not great here, but we are not in crisis, so I feel I'm better off just waiting, watching, and learning.........

 

Just saying, for those that are considering it and feel it is something that will help their child in the long run, great, but pleas do your homework and know that there may be some really rocky times with no guarantees. I guess I'm just thinking that it is not good, responsible, to 'tout' these treatments as tho they are a peice of cake and the answer to everyones prayers........ :( ... maybe it is, maybe it isn't..... I don't know, I'm just learning like all of you here.

 

 

Faith

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My son was DEFINITELY at the height of his exaberation when he had the first IVIG. This second one he was withing a week and a half of one but maybe on the up side.

 

Currently regret it, but too soon to look at the 'big picture'. My son, who is 13, had it 3/22. Prior to it his symptoms were good for a week or two but we went through with it anyway. Two days following all of his symptoms returned. Back in the fall there was a lot of people talking about saw tooth healing, and maybe that's what we're seeing. But this increase in symptoms blindsided me. Maybe had I know I would been better prepared.

Following his first IVIG 10/27 we had from 12/10 until 2/10 fairly good.

 

So, it took about 6 weeks after the 1st IVIG to see improvements? Was he in exacerbation when you did the 1st one?

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Faith,

 

In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

 

I'll use my girl as an example. Court, 10, has really bad behavioral regression, so I might prepare myself to see that amplified and for her act like a 4 y.o. if she had IVIG, temporarily. But she has never exhibited raging, throwing, violent outbursts.

 

Do you recall any incidents of "activiation" of never before seen behaviors?

 

Thanks,

Jill

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Currently regret it, but too soon to look at the 'big picture'. My son, who is 13, had it 3/22. Prior to it his symptoms were good for a week or two but we went through with it anyway. Two days following all of his symptoms returned. Back in the fall there was a lot of people talking about saw tooth healing, and maybe that's what we're seeing. But this increase in symptoms blindsided me. Maybe had I know I would been better prepared.

Following his first IVIG 10/27 we had from 12/10 until 2/10 fairly good.

 

 

Who did the IV? What kind and at what dosage?

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these are kind of questions i am looking for....Ds has moderate to severe tics...compulstions???...some tridkkl...(hair pullilng)

is there a possibilby of exchanging these problems for more ocdish stuff/etc

 

I noticted Lauren on the today show,,,post ivig has a slight eye twitch???

very very mild and better than the perpetual sneezing....

I would take the eye thing in a heart beat for what is going on now....

 

And with bubbasmom.....it hasn't been 4-6 weeks yet.....

so I am hopeing she will report in a couple of weeks that things are better than when she startd

 

 

 

 

Faith,

 

In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

 

I'll use my girl as an example. Court, 10, has really bad behavioral regression, so I might prepare myself to see that amplified and for her act like a 4 y.o. if she had IVIG, temporarily. But she has never exhibited raging, throwing, violent outbursts.

 

Do you recall any incidents of "activiation" of never before seen behaviors?

 

Thanks,

Jill

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EAMOM,

 

I am bummed out to hear of your daughter's recent increase in symptoms. Can you elaborate?

What do you think it was from? How bad is/was it? Prednisone working yet?

 

Thanks! Hope to hear of a speedy recovery!

 

Kelly

 

She got a 1 day Fever and cough in February, that's when the symptoms started coming back. We've increased the Azith (to 500mg/day) in the past couple of weeks as well as recently finished a 5 day burst (and got crabbiness from the pred!). Last time we did a burst it took us 2 weeks to see improvement, so it is too early to say if the that helped. Mood is somewhat better on the higher dose of Azith. A couple of days after the increase, she told her father that she hadn't been happy in a long time, but she was feeling better. The symptoms we're still seeing are "measurement rituals" (maybe tics, maybe compulsions...she touches her ribs and back, to check for fat I assume, does this more when eating, nervous). THese "measurement rituals" had disappeared post IVIG. She also hasn't wanted to play with the neighbor's kids since the Fever. And is concerned about food (what her sister is eating, etc.). Nothing is full-blown, she's still functional, going to school, but definitely noticeable. Her teacher also noticed she was less social.

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After our son's 1st round of IVIG, we saw significant improvement - probably 70% better overall within 1-2 months. But we did also see a brand-new symptom: his 1st vocal tic, which grew progressively worse from a seal-like bark to a high-pitched screech. The new symptom surprised us. Didn't seem like "turning back the pages."

 

 

Faith,

 

In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

 

I'll use my girl as an example. Court, 10, has really bad behavioral regression, so I might prepare myself to see that amplified and for her act like a 4 y.o. if she had IVIG, temporarily. But she has never exhibited raging, throwing, violent outbursts.

 

Do you recall any incidents of "activiation" of never before seen behaviors?

 

Thanks,

Jill

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