Anyone have PEX?

[Joan Pandas Mom]

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

[MMC]

Hello Joan. Our son had plasmapheresis last January, 2010. I think this is considered the same thing as PEX or plasma exchange. This was ordered by Dr Latimer at Georgetown. My wife and her mother drove up from Raleigh, NC area. I did not go, so don't have all the details as my wife would. She could PM you if you like. Here is what I know...

 

The folks at Georgetown are great. DS had no complications and did not complain at all about the process, said he couldn't even feel it when the exchange was happening. I know the removal of the artery catheter was uncomfortable, but this is the only thing I remember he had anything negative comments on. He was 11 at the time. He had 3 exhanges over 3 days and they then drove home. So, did not have to deal with an airport. I don't think we were given any instructions about keeping him quarantined. The wound took a while to heal, but he was up and around before long.

 

PEX is expensive, but insurance covered most of this for us. But, they do not cover IVIG. Although, he has had one HD IVIG since then, back in April...and this had many more bad side effects. We may never do IVIG again.

 

Results were good. We noticed immediate improvement from tics and reduction in other symptoms...but his main symptoms are tics. But, this was short lived. He got the flu in February. Tics came back. We wonder about doing pheresis again, because tics are everpresent. We are in the process of searching out a Lyme doctor. Don't know if he has Lyme, but he has enough symptoms to fall under a PITAND diagnosis. Maybe there are co-infections. My thoughts are to clear any co-infections, then have PEX again if needed. We haven't found a doc that can help us and lead us in doing this yet, and this is why we are heading towards a Lyme specialist. This has proven challenging, NC is not friendly to Lyme docs from what I have found. I wish you the best in your treatment decisions.

[Joan Pandas Mom]

Thanks for this MMC. It is so hard to figure out what to do. I wish you the best of luck in your decision too. What did you experience for bad side effects from the IVIG? We had HORRIBLE turning back the pages with all three. We had bad headache and a little vomiting with 1&2.

[MMC]

The IVIG was a 2 grams / kilo over 2 days. And on the 2nd day, he became violently ill...vomiting, fever, rapid heart rate, rapid breathing, so they stopped the drip. So, he only received 1.5. They got him stable, but kept him overnight for observation. During the night, he had a bad night terror and his hear rate went way up again...glad he was in the hospital b/c my wife was terrified. And his side effects have continued after he got home for the next several months. Most of which we knew would happen...flushing, fatigue, rapid heart beat. But the worse was the night terrors. He has probably had half a dozen of these or more since then. Had one about a week ago. He will get up from sleeping, sleep walk, and then get this crazed look like someone is about to kill him. Screams, goes crazy for several minutes, then calms down and goes back to sleep...doesn't remember any of it. He never experienced anything like this before the IVIG. Maybe the side effects mean the IVIG is still working, not sure. I have heard it can do its work for up to a year, and this was last April. He was tested as immune deficient in addition to PANDAS. But, BCBS still denied paying for IVIG. How we got he first one done and paid for is a long story. But, b/c of his side effects and not much improvement (that we can see, hoping for immune system improvement that we can't see)...that's enough IVIG for us at this time.

 

We saw more improvement from PEX and no side effects, but unfortunately, as I said it was short lived.

 

I just made an appointment for him today with an LLMD in MD...Dr B. That's our next step, look for Lyme or co-infections.

[lismom]

The IVIG was a 2 grams / kilo over 2 days. And on the 2nd day, he became violently ill...vomiting, fever, rapid heart rate, rapid breathing, so they stopped the drip. So, he only received 1.5. They got him stable, but kept him overnight for observation. During the night, he had a bad night terror and his hear rate went way up again...glad he was in the hospital b/c my wife was terrified. And his side effects have continued after he got home for the next several months. Most of which we knew would happen...flushing, fatigue, rapid heart beat. But the worse was the night terrors. He has probably had half a dozen of these or more since then. Had one about a week ago. He will get up from sleeping, sleep walk, and then get this crazed look like someone is about to kill him. Screams, goes crazy for several minutes, then calms down and goes back to sleep...doesn't remember any of it. He never experienced anything like this before the IVIG. Maybe the side effects mean the IVIG is still working, not sure. I have heard it can do its work for up to a year, and this was last April. He was tested as immune deficient in addition to PANDAS. But, BCBS still denied paying for IVIG. How we got he first one done and paid for is a long story. But, b/c of his side effects and not much improvement (that we can see, hoping for immune system improvement that we can't see)...that's enough IVIG for us at this time.

 

We saw more improvement from PEX and no side effects, but unfortunately, as I said it was short lived.

 

I just made an appointment for him today with an LLMD in MD...Dr B. That's our next step, look for Lyme or co-infections.

 

I am in the process of testing for lyme for my son. We've been on the PANDAS road for almost two years. The visible sypmtoms are tics. My son has other internal physical symptoms though. If I could ask, what type of tics are you dealing with? Thanks, Kathy

[KeithandElizabeth]

I am so sorry that your son is not doing better!

 

I know you have done the IGENEX testing, but I would recommend meeting with an LLMD to rule out ALL possible infections before doing the PEX. I think that PEX may give you temporary relief, but if there is still an underlying infections, I am not sure it will bring your son to 100%

 

We have not done PEX so I am not speaking from personal experience. I know that there are many families that had great success with PEX and then there are some families whose children did regress post PEX.

 

I guess I am only suggesting ruling out all possible infections before proceeding with PEX.

 

Elizabeth

[LNN]

We had a positive experience with pex - very effective. Yes, expensive, but with insurance coverage, no more expensive for us than IVIG (we've done both). The process was uneventful, the staff and PICU setup was awesome. The worst part was when they removed the adhesive bandage that held the central line in place (use LOTS of adhesive remover and it won't be an issue - we should've asked for a whole box of remover wipes and not settled for the 10 1x1 squares we were given). But overall, a very good experience.

 

Like you, we had a horrible experience with IVIG. But that's probably because we had undiagnosed lyme (which may be why the pex results didn't hold and we turned to IVIG). So I agree - make sure you screen for underlying infections first. Then, if you are "just" Pandas (ha - like it's "just" a heart attack), I think pex can offer very positive benefits.

 

As for airports - we drove. It was 10 hrs, but in a nonsensical way, I felt more in control bringing a canister of clorox wipes into McDs and rest stops than I would've if we had flown. If you decide to go ahead with pex, feel free to PM me, or I'm sure any of us, and we'll walk you through the whole process.

[GraceUnderPressure]

I haven't had time to do a whole lot of digging with all that we have going on over here, but from the little bit I've done, it looks like it is almost impossible to get PEX unless your child is completely incapacitated. (At least over here in the Houston, TX area) My ds18 is close to incapacitated, but technically still functioning so I don't know that I would be able to talk anyone into approving it here & we can't go to DC. (My DH is being treated for a blood clot in his carotid artery & may have to undergo surgery in 6 wks)

 

I've been wondering - is anyone doing PEX besides Latimer? How did she get Georgetown to cooperate with her on it? And now that she's not taking new patients, there's no options left apparently. Or will Georgetown do it based on other dr's orders? The little bit of research on this has been inconclusive so it doesn't look like we'll be able to persuade anyone to change unless there is more research on this. Someone please tell me that it's not as impossible as it looks from here?

[T_Mom]

I haven't had time to do a whole lot of digging with all that we have going on over here, but from the little bit I've done, it looks like it is almost impossible to get PEX unless your child is completely incapacitated. (At least over here in the Houston, TX area) My ds18 is close to incapacitated, but technically still functioning so I don't know that I would be able to talk anyone into approving it here & we can't go to DC. (My DH is being treated for a blood clot in his carotid artery & may have to undergo surgery in 6 wks)

 

I've been wondering - is anyone doing PEX besides Latimer? How did she get Georgetown to cooperate with her on it? And now that she's not taking new patients, there's no options left apparently. Or will Georgetown do it based on other dr's orders? The little bit of research on this has been inconclusive so it doesn't look like we'll be able to persuade anyone to change unless there is more research on this. Someone please tell me that it's not as impossible as it looks from here?

 

 

Hi Grace--

I have heard of others getting plasmapheresis over the years for severe cases (as noted on the NIMH website). I know I have heard of DAN doctors here and there who have access to pheresis labs. The key is to find a doctor who is treating Ps and has admitting ability to pex lab.

Edited January 21, 2011 by T.Mom

[MMC]

The IVIG was a 2 grams / kilo over 2 days. And on the 2nd day, he became violently ill...vomiting, fever, rapid heart rate, rapid breathing, so they stopped the drip. So, he only received 1.5. They got him stable, but kept him overnight for observation. During the night, he had a bad night terror and his hear rate went way up again...glad he was in the hospital b/c my wife was terrified. And his side effects have continued after he got home for the next several months. Most of which we knew would happen...flushing, fatigue, rapid heart beat. But the worse was the night terrors. He has probably had half a dozen of these or more since then. Had one about a week ago. He will get up from sleeping, sleep walk, and then get this crazed look like someone is about to kill him. Screams, goes crazy for several minutes, then calms down and goes back to sleep...doesn't remember any of it. He never experienced anything like this before the IVIG. Maybe the side effects mean the IVIG is still working, not sure. I have heard it can do its work for up to a year, and this was last April. He was tested as immune deficient in addition to PANDAS. But, BCBS still denied paying for IVIG. How we got he first one done and paid for is a long story. But, b/c of his side effects and not much improvement (that we can see, hoping for immune system improvement that we can't see)...that's enough IVIG for us at this time.

 

We saw more improvement from PEX and no side effects, but unfortunately, as I said it was short lived.

 

I just made an appointment for him today with an LLMD in MD...Dr B. That's our next step, look for Lyme or co-infections.

 

I am in the process of testing for lyme for my son. We've been on the PANDAS road for almost two years. The visible sypmtoms are tics. My son has other internal physical symptoms though. If I could ask, what type of tics are you dealing with? Thanks, Kathy

 

Kathy, he has multiple tics head to toe. Thankfully, the severity is less these days...maybe PEX or IVIG has helped to diminish them, or just maturing with age, as he will be 13 this year. They have always been worse in the evening, but doesn't have the episodes he used to have. But he still deals with...a torso tic, like a hiccup...head jerk tic...multiple facial tics, eye blinking is the worse currently...hand tics, fingers curl up...toe tics, his toes have to be touching the floor when he sits so he can do a twist type tic, and this affects his walking, he stops every few steps and does a toe tap. This is almost OCD-like, but does involve this physical tic. He has learned to suppress this one to a certain degree b/c he doesn't want to scuff his new shoes he got for Christmas. But suppression makes things worse in the evenings. He still develops new tics or they move around. We have been dealing with this for almost two years as well...our daughter has PANDAS w/ lesser severity, for the past 10 years...so it was not a complete surprise when he got it.

 

He's not really had any verbal tics, although I sometimes hear a lip flutter, like a motor boat sound. And we have seen a coughing tic when things were really bad with the evening episodes.

 

He takes Amitriptyline for IBS and we had to add Clonidine in the evenings to help him get to sleep. And sometimes Benadryl. Without these drugs, he would have a tough time going to sleep...we don't dare miss a night's dose, I start prompting him to take his meds around 7:30pm. I am looking forward to the day when we don't have to drug our child to get him to sleep. He tried the Clonidine patch during the day, but it made him sleepy and we chose to stop this b/c it didn't reduce tics enough anyway.

[Joan Pandas Mom]

Thanks for this. It is sooo hard to decide what to do. MMC I'm so sorry your son had to go through all of that.

[GraceUnderPressure]

Hi Grace--

I have heard of others getting plasmapheresis over the years for severe cases (as noted on the NIMH website). I know I have heard of DAN doctors here and there who have access to pheresis labs. The key is to find a doctor who is treating Ps and has admitting ability to pex lab.

Any idea of how one would go about finding this information? Does ARI track it like they track (or at least used to) who does IVIG? Or do one of our P's sites keep track of it?

[rockytop]

We just returned from PEX recently. the staff was great and I cannot report either way on success yet (too soon)

 

I think Dr L WILL take new patients eventually- her office was creating a waiting list. Give them a call and see.

 

For what it is worth- both of the pheresis nurses said that if it were their child, they would do plasmapheresis first for sure and that IVIG would be their last choice. Granted, 1. they do not have children with PANDAS & 2. apheresis is their specialty and area of interest , but I will consider their advice as I progress with my children. I did not ask their opinion- they actaully offered it. I imagine after talking with parents during the muti-hour exchanges over 3 days they have learned alot about what we are doing for treatment.

 

Our experience with PEX was similar to what was already posted, except that our child was not in ICU- but on a general peds floor.

 

There are different techniques (namely central vs. peripheral line & number of exchanges) I think that for this purpose (and the nurses verified) that central accesss and mulitple exchanges in a sequence are superior to one exchange through a PICC line. Maybe that is something to consider when you are attempting to find another pheresis option.

 

Also we live locally (fairly) so we drove and stayed in a hotel about 1 mile form georgetown the night before. Also, the hem/onc doctors confirmed that one is NOT immunocompromised after pex, as (adding my own dumbed down understanding here) your plasma is not some static entity, that is there one and minute and gone after pex. Your body replaces it (and replaces the filler added during pex)easily and the immune system is not affected by this-- not in an "immunocompromised way" at least.

Edited January 22, 2011 by rockytop

[dcmom]

My kids both had pex- they both had an amazingly positive response to it. It is not without risks however.

 

I was recently trying to figure out if I could find an option closer to home. I even spoke with the pheresis/transfusion dept at a major local hospital. The doc there was familiar, and believedvin pheresis for pandas- she said their dep would do it- but I needed a doc to Rx it. She said NONE of the staff docs will treat pandas, so I would need a doc in private practice with hospital priveledges to rx. There is no one.

 

Insurance covg is a whole other issue.

 

E

[Tenacity]

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 is gravely ill with some version of this hideous post-infectious neuro-psychiatric autoimmune disease, which started at least four years ago, and may even have started as long as six years ago (following a mycoplasma pneumonia infection). Among other things, he is currently mute, cannot read, write or draw, and cannot be touched without having reactive abnormal movements. He had plasmapheresis in Georgetown in mid-October. Within the first two weeks the abnormal touch-reactive movements stopped. (One of the plasmapheresis nurses had predicted that this might be the first change we would see.) It was quite dramatic and unmistakable. By about two months post-plasmapheresis, he had become noticeably more relaxed and socially interactive, and he used a pen for the first time in over a year -- though not to write or draw exactly, just to cross out some pictures on a list. It was exciting to see these positive changes indicating healing, and, of course, we hoped and prayed the healing would continue. But just before Christmas my younger son came down with a head cold, my husband and I had some sort of low-grade virus, and a neighborhood playmate had strep throat. Shortly thereafter, although he never had any temperature or congestion as his little brother had had, my PANDAS/PITAND/SC son abruptly worsened, with nasty old neuro-psychiatric symptoms returning or ramping up again. The doctor now recommends IVIG, which we are trying to schedule.

 

Our pre-plasmapheresis consultation was a terrible ordeal. My son has a long, incorrect psychiatric record indicating that he has bipolar disorder and conversion disorder; he's on the brink of puberty (a physically mature 12-year-old); and he's been so sick for so long that now he's long-haired, pale, can't speak or even write in order to express himself (even though his essential intelligence is still there and he understands everything going on around him very well). All these things make it harder to get past all the prejudice and suspicion. We were told the meeting would take about an hour to an hour and half. We were there for five and a half hours. We were interrogated like criminal suspects. Even had a medical student scold me for failing to bring test results for illicit drug use. When my son first fell seriously ill about four years ago he was a star of his second-grade class and not yet even eight years old. Illicit drug use?! . . . It was bad.

 

I fought -- as politely and firmly as I could -- and somehow we prevailed. In the end, my son was given the O.K. to receive plasmapheresis.

 

The procedure itself went very well. The sedation team, the unit nurses, and the plasmapheresis nurses were all first-rate -- professional, respectful, gentle and kind. Of course, it's no fun for anyone to be in the hospital, and harder for a child suffering an array of debilitating neuro-psychiatric symptoms than for the average person with a healthy brain. But my son was brave and cooperative. He made it through just fine, and we were proud of him.

 

Traveling with a child sick with PANDAS/PITAND is always tough. I have no particular tips to make it easier, except to say both parents should be there (or a parent and another adult close to the child), so that they can help each other, spell each other, and so that at least one adult can stay with the child at all times.

 

With Hope for Healing,

 

Tenacity