Plasmapheresis besides Georgetown?

[GraceUnderPressure]

Would like to hear from members who had PEX outside of Georgetown with someone besides Dr. L as we live near Houston, TX & that is a pretty long distance - you can pm me if you're more comfortable with that.

 

Thanks!

~Grace

[NMom]

Grace,

 

We are also patients of dr L. And live just north of Houston...and are considering pex. Did u get any feedback on your question?

[PowPow]

pm'd you--

 

but on why you SHOULD try for g'town-- not the info you were looking for, I know

[NMom]

Grace - I didn't get your PM...can you try again?

[NMom]

Sorry -meant PowPow - didn't get your PM.

[browneyesmom]

I agree with PowPow about trying for Georgetown. Just before our first appointment with Dr. L, a friend who also sees her for her PANDAS child, told me that Dr. L is so well respected at Georgetown that they do PEX the way she tells them to do it for her patients. Also, I heard Dr. Swedo say that she didn't used to like PEX for our kids... until she found out how they are doing it at Georgetown. She said that it's safer than IVIG the way they do it and that everyone should follow the same protocol that Georgetown does.

 

Sorry, I know this is not the information you requested, but felt compelled to comment.

Edited August 13, 2011 by browneyesmom

[NMom]

Thanks for responding! This is a hugely difficult decision and I so appreciate the feedback. I am absolutely convinced that if we do PEX - it will be with Dr. L at Georgetown. We are trying to determine right now whether to do IVIG, PEX or just stay on antibiotics....tough choices! My son is fully functional but definitely still struggling a lot mentally. He told Dr. L and then reiterated to me again this morning that he wants to go to the hospital and do whatever it takes to make this all stop. But it's never that simple, is it? Does anyone just do PEX or IVIG and it all just stops? I hate to put him through something so traumatizing if it's not going to be a significant improvement and he's already functioning..I hate this.

[T_Mom]

Thanks for responding! This is a hugely difficult decision and I so appreciate the feedback. I am absolutely convinced that if we do PEX - it will be with Dr. L at Georgetown. We are trying to determine right now whether to do IVIG, PEX or just stay on antibiotics....tough choices! My son is fully functional but definitely still struggling a lot mentally. He told Dr. L and then reiterated to me again this morning that he wants to go to the hospital and do whatever it takes to make this all stop. But it's never that simple, is it? Does anyone just do PEX or IVIG and it all just stops? I hate to put him through something so traumatizing if it's not going to be a significant improvement and he's already functioning..I hate this.

 

Yes, I can raise my hand on this one and say that YES we did IVIG and over the course of the last 12 weeks the OCD has virtually, "all" stopped -- I cannot say 100%, but she is very close.

 

I have known a number of families that have done either pex or IVIG and neither of the actual treatments strike me as traumatizing.

 

IVIG was not a bad experience at all in any way for us -- Our 11 year old d read books, watched movies, played with her computer game for 6-7 hours for each of two days, while hooked up to an IV and had no side effects (we used Gammunex, which I have heard has had very good effects.) We also were given IV steroids at the very end.

 

I can tell you that so far there is not one shred of regret for us. The change has been miraculous. Last year she was not "gradeable" as judged by her school. She will go back to school able to write and do math -- the dramatic effects have been amazing.

[oivay]

We did plasmapharesis at CHOP on an outpatient basis. Thankfully my daughter's veins held up.

 

They do it twice weekly, either mon/thurs or tues/friday for three weeks. It was a bit of a drive for us.

I think the risk of infection was actually pretty low as they throw away everything afterward. (The nurses showed us how it all worked.)

 

She was diagnosed with Pandas and Sydenham's chorea and had debilitating tics and chorea.

 

There was a noticeable difference after the 2nd treatment and she has been fine since. You'd never know how sick she was by looking at her now.

It made a tremendous difference.

[lynn]

Oivay, I hope you don't mind a whole series of questions! Who did you see at CHOP? Did the first treatment not work, and if so, how did you decide to do a second treatment instead of deciding the whole thing didn't work? Did your insurance pay? Is your DD on antibiotics now?

 

Sorry for the barage! We are looking into this as well!

 

Lynn

[oivay]

We saw Dr. Elia at Chop. Dr. T is her neurologist. They spoke with each other throughout the process.

 

They have to do a series of treatments, I think it is based on weight/blood volume? They will explain it all to you, but I really was in no state to process all the information. You can't do just one treatment. It has to be a series of treatments to make sure all of the blood is filtered. I think it's based on gas chromotography/filtration? Again, I probably should have paid more attention, but I just wasn't really focusing on the science involved at the time.

 

Yes, my insurance paid, or at least they're supposed to. Chop wouldn't do anything without an authorization code from the insurance co.

 

In her case, we were lucky that her veins held up. If they hadn't, they would have put in a subclavian catheter, which they do under general anasthesia.

They put one IV in each arm, blood comes out one side, and goes back in the other with the plasma/albumin etc. after going through the machine and a blood warmer. The nurses at Chop really go out of their way to make the kids comfortable, and they watch dvds, play games etc. while it's going on. Each treament took about two hours.

 

Yes, daughter is still on abx now, zithro twice weekly. She seems absolutely fine now,plays sports, runs around with her friends, but I don't dare skip the zithro, just in case.

 

she hasn't had any tics/chorea since. she did get a really bad cold right after pharesis, and she missed a lot of school during the process as it totally wiped her out, but it was the only thing that worked for us. and we tried it all before getting it.....abx, steroids, depakote, tegretol, valium, dexamethazone, you name it........

[PowPow]

Georgetown has a different technique. They use a central venous catheter (femoral or jugular)and there are 3 exchanges, done over 3-4 days. However, they exchange a volume equal to (I believe) 4 and a half total exchanges. I think (I am not a dialysis nurse!) that they can exchange more through the CVC than through a peripherally inserted line, simply due to the bore of the catheter.

That is AWESOME that it worked for your daughter! Georgetown's plasmapheresis worked amazingly for my 2 girls- one almost 9 months out and the other only 3 weeks. I would do it again in a heartbeat.

Another mom on here asked me (very thoughtful question, by the way)-- if another child had milder symptoms and was offered pex, in the mode of preventing the progression that we have seen in 2 daughters already, would I do it? I thought & talked to my husband at length about it this weekend.

We do have a 6 yo who was treated successfully with abx & steroids for vocal tics, sensory issues and fears. The answer to-- pex for "preventing progression" to chronic PANDAS devastation? YES.

If it is offered to us for her, if she relapses-- YES.