Is being in the IVIG study a good thing?

[bulldog24]

my 6 year old is scheduled to be part of the IVIG study if the in person interview goes well, which they said they anticipate will.

 

I was all gung ho, but now i am second guessing my decision. I have weighed the pros and cons and i still want to go. I am just worried about a few things

 

first, he is going to be ttraumatized from the poking and prodding and testing. my husband will have to miss 1 week of work, I will be away from my 3 month old baby and my 10 year old daughter and hubby.

He is supposed to get his tonsils out but will have to postpone that and my daughters tonsils too.

pros are that we dont pay for testing etc. he will have some of the bestt doctors,a diagnosis,and possibly IVIG (50%)

 

So should I be thanking my lucky stars, or running away as fast as I can? WWYD? there is also a chance we dont get past the first day and will get sent home. What if he gets better on the abx he starts today? they do not use sedation for anything. soas an example- he would have a spinal tap w/o anything besides numbing medicine (topical, injectable)

and he isnt sick enough when we get to the study? I dont travel well. I am petrified about going on a plane, I am diasbled from chronic lyme etc.

 

I think its important to help the doctors learn about pandas and I want to help but I need to help my son first.

[tpotter]

my 6 year old is scheduled to be part of the IVIG study if the in person interview goes well, which they said they anticipate will.

 

I was all gung ho, but now i am second guessing my decision. I have weighed the pros and cons and i still want to go. I am just worried about a few things

 

first, he is going to be ttraumatized from the poking and prodding and testing. my husband will have to miss 1 week of work, I will be away from my 3 month old baby and my 10 year old daughter and hubby.

He is supposed to get his tonsils out but will have to postpone that and my daughters tonsils too.

pros are that we dont pay for testing etc. he will have some of the bestt doctors,a diagnosis,and possibly IVIG (50%)

 

So should I be thanking my lucky stars, or running away as fast as I can? WWYD? there is also a chance we dont get past the first day and will get sent home. What if he gets better on the abx he starts today? they do not use sedation for anything. soas an example- he would have a spinal tap w/o anything besides numbing medicine (topical, injectable)

and he isnt sick enough when we get to the study? I dont travel well. I am petrified about going on a plane, I am diasbled from chronic lyme etc.

 

I think its important to help the doctors learn about pandas and I want to help but I need to help my son first.

 

One thing that may help your decision is that you really have 100% chance of getting the IVIG. If it turns out that he is on the placebo, you can choose to get the real thing about 1 or 2 months later. Also, what many people are finding is that the abx helps only temporarily, because this is an autoimmune illness. What they discussed at the TX A&M conference is that it's the reaction to strep that is the autoimmune reaction to the strep that causes PANS.

[Kiera]

bulldog24, this is a hard one given all that you stated! I myself, am currently waiting insurance clearance for ivig, which I expect to be a fight! What I would give to be in the study, but my ds has too many comorbid conditions to even be considered, plus has it too long! However, my neighbor's 6yr old is just on the cusp of a pandas diagnosis and very classic so far, so I'm advising her to avoid steroids and keep the trial in mind, if things worsen. (She's waiting the screener to call back, and titers). It's so hard, she'll be in the same position as you, new onset, what will antibiotics do etc, but then for oldies at this who've been through the ringer, we didn't know at the start of this, which path our kids would take - improve to a manageable level or go down the chronic path of trying everything. No-one call tell the future for your child, only advise I can give you is to go with your gut feeling. My gut feeling would be go for it, in the hopes that catching it so early might arrest the onslaught in it's tracks, and put it into a long remission. IVIG does help tremendously with alot of autoimmune disorders. Just be advised, I'm looking at this through 9yrs of multiple health issues with my son, and not the typical kid one day/ psychiatric disorder the next day kinda kid! Let us know how it goes.

[norcalmom]

Are you kidding? Most people on this forum would give their right arm to have their kids seen by one of those doctors. Even TALK to one of them. You're going to have testing and care that most of us couldn't even imagine. They have a VESTED interest see that everyone of these kids gets better - and are going to spend the time and effort to do whatever they can to make that happen. Their entire careers depend upon it!

The only thing I would probably try to do it get your child on-going ABX after they are done.

 

Good luck. Its a lot to juggle, but at least you will have no regrets.

[Dedee]

There is another family on this forum who have been through the trial. Hopefully they will contact you......

[bulldog24]

I hope this wasnt offensive. I am just scared to death (but determined to help my son) and I am a worrier. I usually make decisions easily. I am overwhelmed,

 

 

I think I will start a blog for this experience.

 

thank you very much for your help.

[saidie10]

GO FOR IT! I couldn't agree more that your child will be in the hands of people who seriously want this trial to have the results they hope for...healing, healing, healing for the participants. Please go with your gut, do what is best for your family, only you can know.

[T_Mom]

Bulldog24--I know how scared you may feel, as I was terrified to do IVIG for our d last year. I can tell you that it made a WORLD of difference. Her OCD and severe ODD did a 180 degree turn around within 4 weeks. The year was essentially a total waste until we did the IVIG (we had used antibiotics continually--and these had "held" her for over a year...we also tried a steroid burst which did not help her.) Finally, finally we did IVIG. I was terrified, but would do it again if necessary. (We paid out of pocket and we are still dealing with insurance on it.)

 

My regret is that we did not do IVIG the very first time she got sick with sudden onset, illness triggered OCD. We would not have lost the last few years to the Ps illness, that will always be my heartfelt regret.

 

I wish you the very best in the study--and hope you get the IVIG right off the bat!! Spinal tap is often recommended and very understandable to rule out any other CNS infection, more scary in the "idea" of it more than anything else in my opinion--don't worry. Look down the pike 20 years and keep reminding yourself of your child's future.

[Kiera]

One more thing to consider - if you have the means to pay for ivig at a later stage, then waiting may be an option. However, if funds are tight (and who's aren't these days!) then you may be closing the window on this option and end up regretting it down the road, if antibiotics don't work.

[norcalmom]

I almost gave myself a nervous breakdown trying to make the decision to do IVIG. I was SOOOOOO nervous and went into an uber -protective mode. I cannot imagine what I would have been like if I had a 3 month old too (alll those hormones and lack of sleep). I thought people would like I was nuts going half way across the country to see a doctor becasue none of the local doctors believed in the diagnosis, let alone were willing get IVIG for him (we had on phychiatrist say she would see if an immunologist she knew would do it - but by the time I was ready to do it - I wanted to see the doctor that had done the most of them, not someone that had never treated a pandas kid with high does ivig before.

 

Best thing we ever did. Also, when Dr K looked at me and said - "Its time to run over the reins to me. You don't need to worry about him for the next two days, thats my job now" It was like a huge weight was lifted from me! It was the closest thing to a vacation I'd had since the thing began. After we were done, it really wasn't that big of a deal, and I wish I had done it earlier. I think most people are petrified,but its actaully very common procedure for other illnesses.

[Iowadawn]

You said 50% chance of IVIG. If you are accepted into the study, in the end it is 100% chance after 6 weeks if you happen to be in the placebo group. I would go for it.

 

The chronic lyme for you jumps out at me. Has that been ruled out in the kids?

 

Best wishes!

dawn

[dcmom]

Bulldog-

 

If finances are NO issue, and you can do IVIG whenever you want- then my personal preference would be to see a pandas doc (Dr L) and have the full range of treatments (abx, steroids, ivig and pex) at your disposal.

 

If finances are a concern at all (which they would be for me, and for most) then I think I would go for it. You know you are in experienced hands with Dr Swedo. You will get IVIG and some in depth testing. You will still most likely need to follow up with a pandas doc.

 

A high percentage of families on the forum have had to progress, at some point, to IVIG or pex.

[Burnell]

WE were in the Study

1. You will get an IVIG 100%. Just may have to wait an extra 6 weeks like we did after having a placebo the first time.

2. No trauma. Spinal tap is no big deal, I was worried it would be too. They numb the back and roll the kid on their side. The kid doesn't know what going on exactly, and they kick you out of the room.

3. Great Docs, if you have a chance, go for it. The tests and watchful eyes are reassuring,

4. They give you $ for food, lodging at the childrens inn.

5. I went for some of it, my wife went for all of it. Other than the ? the fist day and meeting the docs the first day, there is no reason to have both parents there. Really you both do not have to be there.

6. The NIH has free transit vans from BWi and IAD airports several times a day. Flying is easy, take an ipod - read a book - nap and you're there.

[bulldog24]

thank you everyone. No my kids have not tested for lyme. Its posiible but the timing is uncanny for strep. I supposedly didnt get lyme until my son was 1-2 years old, but who knows. I treated while preg with the 3 month old and my placenta, cord, cord blood are all pcr neg for lyme and babesia from clongen. Lyme and other tbi need to be ruled out for sure. That was my plan but then the study kinda fell into my lap.

 

Do they tell you if you get the placebo or IVIG when you are done?>

 

We are broke, like food pantry broke, so paying for IVIG and testing would be virtually impossible.

[dcmom]

Bulldog- I wouldn't even consider saying no in this situation. Go for it, don't look back...