Plasmapheresis next week

[Thesuzie]

DD13 is scheduled at Georgetown next week. We really have not gotten too much info regarding the process, side effects, supplements during the week, what to expect after? After so many disappointments, i am finding it difficult to be hopeful. I would appreciate any feedback. Thanks!

[T_Anna]

 

This is a video from Dr.Latimer at the Italian conference.

 

Ds16 had It done in 8/2013. It did help with some issues, but we think he may have gotten re-infected when he got home. The hospital stay is annoying, but the procedure itself is easy.

[PowPow]

My daughters both had it in 2011. One of them had it twice. All were at georgetown. The process at that time was that they had a central line place (once in the neck the other two times in the groin). The line stayed in the whole time, obviously.after they were sure the line was patent and the girls were ok, they begin the first exchange. During the actual plasmapheresis, the child had to stay in bed for several hours, usually about 4-5 hours . Once they were un hooked from the machine they were able to get up and move around. My girls were maybe 11 and 13 at the time, so they were glad that they were able to get out of bed. They were each there for about 4 days each time. We really did not do very many supplements at that time, but they were on their normal antibiotics and psych meds. One of my daughter improved dramatically 1 week post pex & the second daughter was greatly improved by 1 month. She relapsed, and had a second pex about 4 months later. She also improved at the one month mark but it also did not last. Since then she has had a much better response from oral immunesupresants, monthly IVIG and IV steroids and rituximab. She has since been diagnosed with another autoimmune disorder and autoimmune encephalitis.

 

logisticallly, Georgetown worked out pretty well. Parking was very expensive like $20 or so a day I think, and the food was really far away from the hematology unit at that time. if you can think of anything more specific you would like to ask, I would be more than happy to share with you. Feel free to private message me if you like.

 

the potential side effects of course have to do with the line, mostly- bleeding, infection, clot. Sometimes a child can have problems with calcium and magnesium during the pheresis, but they are transient and correctable. My children were not functional the time and did not attend school, so they were just home all the time anyway after.

 

I am very hopeful for your child that this helps. I can share more privately about the testing my daughter had that found the underlying disorder and her current tx regimen.

Edited February 27, 2015 by powpow

[3Peanuts]

Considering plasmapherisis for my daughters (3 with PANS 13,11,10), oldest dd worst rages. All homebound again after some IVIG success. Powwow, I would love to hear about the additional testing that led you to an additional autoimmune dx. I still feel like we have not gotten to the bottom of this nightmare we are fighting x 3!

 

Not sure how to private message.

 

Thank you for sharing your plasmapherisis experience.

[PowPow]

3peanuts, check upper corner for red flag or number and click. I sent you a private messagem. On mobile device click blue square in upper right corner with four white squares and it will shows messages. I hope that helps you find it!

[michelleb]

We are finally scheduled for IVIG but I heard at Rhode Island Conf that in the case of my son who is extremely depressed adn suicidal and who has not responded to antibiotics so far, that it would be better to go straight to Plasmaperisis. Hoping Dr. L will consider this. We are all on our last leg - my son in particular.

 

Did you have to go through any particaulr steps before getting plasmapherisis scheduled?

[PowPow]

Did steroids help your son? Do you have any idea what started this? The severity of my children's symptoms got pex going for us. Your son sounds very severe. What testing have docs done?

[trggirl]

My daughters both had it in 2011. One of them had it twice. All were at georgetown. The process at that time was that they had a central line place (once in the neck the other two times in the groin). The line stayed in the whole time, obviously.after they were sure the line was patent and the girls were ok, they begin the first exchange. During the actual plasmapheresis, the child had to stay in bed for several hours, usually about 4-5 hours . Once they were un hooked from the machine they were able to get up and move around. My girls were maybe 11 and 13 at the time, so they were glad that they were able to get out of bed. They were each there for about 4 days each time. We really did not do very many supplements at that time, but they were on their normal antibiotics and psych meds. One of my daughter improved dramatically 1 week post pex & the second daughter was greatly improved by 1 month. She relapsed, and had a second pex about 4 months later. She also improved at the one month mark but it also did not last. Since then she has had a much better response from oral immunesupresants, monthly IVIG and IV steroids and rituximab. She has since been diagnosed with another autoimmune disorder and autoimmune encephalitis.

 

logisticallly, Georgetown worked out pretty well. Parking was very expensive like $20 or so a day I think, and the food was really far away from the hematology unit at that time. if you can think of anything more specific you would like to ask, I would be more than happy to share with you. Feel free to private message me if you like.

 

the potential side effects of course have to do with the line, mostly- bleeding, infection, clot. Sometimes a child can have problems with calcium and magnesium during the pheresis, but they are transient and correctable. My children were not functional the time and did not attend school, so they were just home all the time anyway after.

 

I am very hopeful for your child that this helps. I can share more privately about the testing my daughter had that found the underlying disorder and her current tx regimen.

 

 

I would love to hear about the testing and underlying disorder and her current tx regimen.

[4Nikki]

What is the premise behind Plasmapheresis as a treatment? I don't see how getting rid of anti-bodies will help solve the problem unless what ever is producing the anti-bodies is broken like as an example dialysis when the kidney is broken. Perhaps the theory is to give the system a reset? I can certainly understand if the solution is to provide immediate relief from continuous raging like in our dd's case.

[PowPow]

trggirl--i pm'd you!

[pepper1]

Has anyone had luck getting Plasmapheresis in New England? My son, 16, has been daignosed with Autoimmune encephalistis by several experts but we still can't get someone to perform PEX. He's being treated in NH now, is very aggitated and difficult to handle so Doc here is concerned about putting in a central line. He's had multiple IVIGs and steriods without being able to return any quality of life. Have had misarable time with MGH and Boston CH and will not go anywhere near them now. Anyone tried Tufts? or any other providers?

[michelleb]

My son had PEX at Georgetown in May. The process was okay but they were pretty bad with the needles. My son has rolling veins and they were not good with that. They really poked him pretty mercilessly. He also still complains about the pain when they took the line out. Having said that - he complains about everything. day to day the process was pretty straightforward other that the needle issues. My son always has a great day after sedation so it was a treat to have my old boy back again for about 24 hours. We ended up having to stay an extra two days because his fibrinogen numbers were very low. I am guessing it is because we had him on some major ibuprofen before he went in - that is the only medicine that has ever made a difference with him. If you are using it I would recommend stopping until after the treatment.

 

Also re Georgetown - parking is expensive but I think you can use the valet at the Lombardi center. We discovered it with the Rituximab. We had to get a sticker on our parking ticket - but I bet they would do that for you in patient too - you might want to ask. It was only $7 a day that way (we were usually there about 7 hours).

 

There are mixed thoughts in our house on whether it worked at all. I think it helped but we area long way from home. After the PEX we eventually stopped all the anti-psychotics and antidepressants he was on and things got a lot better. rages and panic stricken looks stopped, constant pleading to let him die stopped. Some of it comes up again whenever he make him leave the house (which is rare but sometimes necessary), but not at the levels of before. After 5 months though he got sick and we had a few bad incidents with flares. We just finished Rituximab at Georgetown and are waiting.

 

I hope the PEX works for you.

 

Eager to hear from others who have responded on how they are doing now and how the Rituximab worked and the tests done after that. We are still in a very bad place. Dr. L said not to expect results for two weeks (it has been one), and I heard from another family that they sw no improvement for 8 weeks. I am a wreck waiting. In the meantime he seems to have a cold and is refusing to take any medicine at all - to even the prophylactic antibiotics.

[pepper1]

We tried Rituximab 2x. It didn't seem to help my son at all. He did show some improvement for awhile but I think that was due to the steroids. He always is resposive to them but the aggression is just getting out of control. Not sure if the violent behavior is due to steroids or the encephalitis.

 

I do remember DUKE telling us it could take a month to see benefits from Rituximab. We tried cellcept for 2 months with it but then he just wouldn't take it anymore. He frequently refuses meds so any therapy based on a daily dosing of anything is doomed to fail. That's one of the reasons we're looking for PEX. He so just so hostile that no one wants to deal with him.

I found all APs and SSRIs make him worse. Benadryl seems to work the best, if used sparingly so I've been researching other H1 blockers to see if that helps.

Hope the Rituxan works for you--everyone is different.

[nitshel]

Hi - we have a quick question. We've tried IVIG HD and have not seen improvement and we are thinking about Plasmapheresis.

 

We've been told that a tonsillitis (and adenoid removal) is needed before Plasma could be considered - to ensure that there aren't any "bad bacteria" lurking in there that could influence post-plasmapherisis (since the body is essentially immuno-compromised for a month or so after the plasmapherisis treatment)

 

How many people have had tonsils and adenoids removed before going down the plasmapherisis path? Is this necessary?

[michelleb]

To pepper1 - Thanks for the feedback on Rituxan. I am a wreck just waiting. Hostility and not taking meds is a big problem for us too. I have completely stopped everything especially the SSRIs and the antibiotics because he just won't take them and a pill once in a while does more harm than good. Benadryl and Advil seem to help when I can get him to take it - which is almost never these days.

 

​Our boy was so aggressive and suicidal when we went in for PEX the first time that they refused to do it. We ended up doing IVIG first and that helped a little - enough that I was able to convince the hospital that he would not pull the PEX line out. He ended up doing okay. For us being put under sedation (to put the line in and when in got his tonsils out) gave us our old some back for a few brief hours. After that it was rough. For the last two days I had to stand out side the room so he wouldn't throw things at me. I hope it works for you. It did help us - but not for long. I think if he hadn't gotten sick in the third month post it might have worked better.

 

Who is your dr? We got the PEX through Dr. L at Georgetown.

 

• Quote
• MultiQuote