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Oh, Tenacity what you and your family have been through. Are things any better? Thank you for your post. Would you recommend Plasmaphoresis? I'm hearing that yes it definitely works but once another illness comes along, the kids are back into PANDAS. Do they keep some of the gains? I wish I could go with someone, but I don't have anyone that can come. My fiance works alot and my son's father passed away 2 1/2 years ago. We did 3 IVIG's so far, it is quite the challenge going on my own, I guess I'm getting use to it though.

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Oh, Tenacity what you and your family have been through. Are things any better? Thank you for your post. Would you recommend Plasmaphoresis? I'm hearing that yes it definitely works but once another illness comes along, the kids are back into PANDAS. Do they keep some of the gains? I wish I could go with someone, but I don't have anyone that can come. My fiance works alot and my son's father passed away 2 1/2 years ago. We did 3 IVIG's so far, it is quite the challenge going on my own, I guess I'm getting use to it though.

 

Joan,

 

My heart goes out to you. What grief -- and extra hardship. . . .

 

I know we've communicated a little in the past, and I tried to poke around on the forum and piece together your story, but I guess I only have snippets. I see your son is a teenager who has been sick for a long time. Did you see some positive changes after the IVIG treatments? . . .

 

Of course no one has all the answers, much less a crystal ball to see into the future. But if you trust the doctor, it seems to me it makes sense to go with the recommendation for plasmapheresis. Even if it's not the last treatment your son will need, it could be a step further in the right direction.

 

Here's what I recently wrote to another PANDAS mother about my impressions of immuno-modulatory treatments:

 

Lately, I've been thinking about IVIG and plasmapheresis and post-infectious autoimmune disease of the brain in war terms. (And, come to think of it, maybe "brain" would be a more apt adjective than "neuro-psychiatric" for this illness!) The disease is a terrible host of enemy troops -- the precise number and nature of which are unknown. . . . Plasmapheresis wipes out some of those enemy troops, but you can never manage to get them all, and sometimes more are unexpectedly sent in! . . . And IVIG is the home troops marching into battle. . . . But will there be enough of them? . . . Casualties? . . . Friendly fire? . . . Will they be lucky? . . . Will they win? . . .

 

(My husband compares this ordeal of multiple treatments with progress followed by backsliding, to pushing a boulder up a mountain -- making it up a ways, only to slide back again, but perhaps not all the way back, then making it up a ways further, backsliding a bit again, over and over, til (hopefully!) at last you get that boulder up to the top and it stops slipping back down on you. . . .)

 

I'm beat up, and scared to death that some permanent damage may have been done to my son's brain. However, I have seen distinct improvements following every immuno-modulatory treatment he has received to date. The improvements have not been nearly enough, and each time my son has peaked and then begun to backslide. This is psychologically agonizing to watch -- as I know you know. Still, the fact that any improvements, however limited and short-lived, occurred at all suggests to me that there is still a chance we might win the "war."

 

One of the tiny handful of doctors I actually respect and trust once expressed the unknowns we are facing by means of analogizing the brain to a factory. There is the factory building itself and there are all the workers and the work that goes on inside the factory. We pray that the structure of the building itself has not been compromised, and that if we can only manage to straighten out whatever's wrong with the workers and their work, the factory will run better again -- run as it was meant to. . . .

 

Tenacity

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Has anyone had PEX? Was it helpful? We are seriously considering it. How do you get home after the PEX? I feel like the airport must be a big germ incubator once the antibodies have been removed. Any advice, help, suggestions? Thanks. Joan

 

 

Hi Joan. My son had PEX November 2009. Please note that we had PEX before we had positive tests for Lyme bacteria, bartonella, and possibly babesia.

 

I emphasize that as PEX had minimal to no effect on my son positive or negative. The only improvement that I could point to was that his almost always dilated pupils became less dilated over time. Now that we are using multiple antibiotics for Lyme (& friends), his eyes have really improved. My son also has generalized dystonia and we believe we noticed some improvement in one foot/ankle but nothing sure. Again, now with multiple antibiotics we are really seeing some improvement with the foot/ankle.

 

The process itself was not too bad. As others have noted, removing the bandage is a pain and really hurt! We were close enough to drive so can not comment on other choices for transport.

 

Do I think PEX was worth it? I don't know. We made the best decision we could with the information we had at the time. PEX ultimately may have done more for my son than we realize. Perhaps w/o, we would not be seeing the improvements today.

 

Good luck. bill

Edited by Bill
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  • 2 weeks later...

We did PEX July of 2009. We had immediate results with complete resolution for 4 months. We had it two weeks after Latimer's husband passed away. I thought we would have to cancel but Georgetown let us come anyway. I did call the pediatric intensivist at the hospital where I work and he said he would do it if he had a recommendation from Latimer. He said the red cross comes every Friday to do PEX on the severe sickle cell kids and they could get them to do it Fri and over the weekend. We never did it but it was nice to hear it was an option and that the red cross can come do it at a hospital if the hospital does not have a team.

We did relapse 4 months later after sickness came through the household but then had IVIG and were back to baseline in 7-10 days. I think our turning back the pages was not as severe because we did PEX before IVIG. I have nothing to base that on but that is just my theory. We are now doing IVIG every 4-5 months for a year to see what happens. Each time our symptoms are gone within 4-5 days and return 4-5 months later. Each time they return though they are less. It is like the body is loosing it's ability to attck like it did before.

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My ds has had pex twice. Within 3-4 weeks after the first one we started seeing huge improvements, and he was 95% back to his old self within 6 weeks. That held us for about 3 beautiful months until another illness...mycoplasma pneum. It was totally worth it though...just to see him normal again. And it made me feel better to know I wasn't crazy, and in the end, helped me deal with symptoms when they came back. I was really able to separate the boy from the pandas. We are about 6 weeks from the second pex, and so far not much. Unfortunately, we have had smaller illnesses come through the house so that isn't helping matters. Still waiting patiently...

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No, they came back slowly. I did get to see that sudden-onset a little bit that I never had. That was interesting!! One minute he was fine, and the next he was screaming.

 

I also thought of something else...in those 3-4 months he was better, he grew tremendously. He hadn't grown a pants size in a couple of years, and I had always been able to see his ribs...even before pandas dx. He just never seemed to grow like other kids. Shortly, after the pex, once his body stopped fighting itself, all that energy went into growing. One day I looked at him at I couldn't see his ribs. I was so excited!! Over that short period, he grew 3-4 inches, and gained 15 lbs. And I really don't think it was a normal growth spurt...the timing was too perfect.

 

Good Luck!!

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