Is being in the IVIG study a good thing?

[philamom]

Bulldog- Maybe you could check out "Lyme Aid 4 Kids" for help with lyme testing. It sounds like you may be eligble. Sending prayers!

[T_Mom]

I think at some point you have to trust your mom instincts. Despite your fears or the words of the nay-sayers (whoever they may be in your family/friend circle.)

 

Do YOU think your child has PANDAS or PANS? If so, then one way or another you need to get treatment for this autoimmune illness. Have courage and let us know what happens--all the best to you!

[nicklemama]

I agree w/ DCMom....do it and don't look back. We are 6 months post IVIG. I would have given anything to have qualified for the NIH study. This is an opportunity that has been handed to you. Take it....for your child's sake.

 

Cindy

[bulldog24]

Thanks everyone. We are going for it! we leave in 6 days. Hopefully we dont get rejected when we are there.

 

I started a blog to document the journey. Not too much there now, byt will be working on it.

 

http://www.caringbridge.org/visit/JourneythroughPANDAS

[airial95]

Good Luck!! We are evaluating the possibility of the study for my daughter, who was just recently dx. She goes to see Dr. Murphy on Jan 4th for a confirmation of our pediatricians dx, and my husband and I have been discussing the study for her.

 

When I contacted them earlier this year about my son, he was too young, but they thought he might be a good candidate when he turned 4 (which happened last week). They asked me to follow up with them after his birthday to see if he'd still be eligible, but he's going for T&A next week, so we don't want to muddy the waters.

 

As for deciding if we would enroll our daughter if she's eligible, we've gone back and forth on that. She's not as severe as our son, but has trouble functioning with strep. ABX worked for her the previous two infections with a single 10 day course (when I was the only one who suspected anything was up.) The infection she got in September was by far her worst PANDAS-wise (which is why the doctor finally acknowledged it) and the 30 days of abx he gave her helped, but didn't get her back 100% like I had seen the other two times on a shorter course...so she's getting worse.

 

It's a big decision, and I'd be lying if my husband and I haven't discussed the implication of enrolling her for the benefit of other children - including our son. If by including her in this research, IVIG becomes more readily available and accessible for other suffering children, that's a benefit we're willing to weigh with the risks. Especially considering both of my kids will likely need IVIG at some point in the future anyway.

[Dedee]

I think you are doing the right thing. Glad that Burnell replied. Listen to what they say because that is first hand information. Best of luck to your family. Sending prayers.

 

Dedee

[Minnesota Mom]

We are in the research study and has been a great experience. You have the leading doctors researching and treating PANDAS working with your child. We got placebo the first time. I am a firrm believer that IVIG works. Within days of treatment I saw huge changes and the recover after IVIG was rapid. We are 3 months post IVIG and my son is 95% back. Look beyond the tests and procedures, they do a great job of comforting you and your child through all of this. The spinal tap really was no big deal. I think you will be grateful you enrolled. I got cold feet right befor our first visit, but once we got there I felt like I finally had someone that truly understood all that we were going through. Good Luck!

[bulldog24]

Thank you for sharing your story, its reassuring. How old is your kiddo?

 

My main issue right now is that I am afraid that between now and sunday, something is going to happen that will keep us from going into the study. It could take something as minor as a cold. Also my son is slightly better than last week. I dont want to get there to be turned away and sent home. Part of the reason is that my back up plan is that we go to see Dr. B on monday tonsils out wed. SO I dont have a lot of time in between to play with if something happens.

 

I am a worrier anyway, but I am trying to remain hopeful.

[Burnell]

Bulldog - NIH will pay your travel expenses and give your child a stipend for food while you are there. The parents food is at your won cost. That said, the Children' s Inn , on the NIH campus where u stay free, has a church provide a free evening meal 6/7 nights a week. Sometimes there are free lunches for emplyoees and familes too. You can get by inexpensively in the NIH cafeteria. Children' s Inn has contiental breakfest too. There is a free library at NIH and another at the Inn for mags, DVDs, and books. This is a no brainer going to NIH. When you have doubts or worry, don't show them around your child. Stay positive. If things go well and you can leave, the national zoo is free a short red line metro ride away. The metro costs a few bucks for each person.

[bulldog24]

thank you. I appreciate the details. I am not a traveler and have no idea what I am doing!

 

I am going to pretend like I do!

thanks fo rthe zoo tip. Is there an aquarium near by. He loves sea creatures.

[bulldog24]

i am very anxious to get there. We leave on Sunday. Just want to get this going. Its the not knowing that is driving me crazy.

[kimballot]

Bulldog, Burnell, Minnesota Mom and anyone else who has enrolled his/her child in the IVIG study - THANK YOU for being in the study.

 

I wish all of our children who receive IVIG could be studied, but (unfortunately) most of our kids are pretty complicated cases by the time we discover the problem and reach the point of needing IVIG, so we really rely on the kids with newer cases to provide the data.

 

I look forward to the day when kids with PANDAS can receive early diagnosis and proper treatment so families can avoid the complicated immune-system tangles that many of our children experience. I hope that your children experience quick relief with their IVIG treatment and I hope they are able to stay healthy and sustain the benefits.

[tpotter]

I know this isn't pertaining to your thread, but I just had to comment on kimballot's tag line at the end of her post. Wow...if that doesn't speak to what we are all about, I don't know what does!

 

Love it.

[bulldog24]

Thanks everyone!We leave for the airport in an hour and a half. yikes! so nervous. please send us good vibes. check out the caringbridge site will be updating everyday.

 

thanks to you all