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PEX next week...advice?


forjpj
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Thanks...we'll need it! A little over a year ago I started to notice issues with my son 9 ...mostly behavior. By spring, the behavior issues had grown and his tactile defensiveness had also increased. He was diagnosed with sensory integration disorder when he was 5 so some behaviors we were use to and could write off as that, but when they didn't go away...I knew something else was wrong. He had been sicker than ever last school year with frequent sinus infections and sore throats, but they never tested positive for strep. In April/May, I began noticing compulsions, and I remember saying "uh-oh". When he was 5, we saw a 6 week spell of compulsions, which was considered ocd caused by the stress of the upcoming kindergarten year. At the end of May, he had a strange rash in the groin area which was dxed as bug bites with impetigo. The day I kept him home from school for that was the first real day things were bad. He wanted to go play catch with me, but he couldn't because he couldn't get his shoes on the exact same way on both sides...we now call this "being even". I had seen info about PANDAS on the ocd web site, so when I mentioned it to the doc who was treating him for his sick visit she told me there wasn't really much treatment different than normal ocd especially if it wasn't affecting his daily activities of living. It was of course...not to the same extreme as now...but I wasn't vocal enough. He had seen a behavioral therapist when he was 5, so I figured we would go back and see her. So we struggled through the summer with behavior and the compulsions...not really realizing they were compulsions yet...and by July I was ready to revisit the PANDAS info thanks to a chiropractic neurologist. Our pediatrician started him on Lexapro for the behavior/anxiety and ordered blood work. We found out the strep came back negative, so once again I was disillusioned. Then Saving Sammy came out and my mom saw the interview on the Today show. She called me to tell me how much this looked like my son, so we were more convinced now than ever. My ped. said okay when I said I really felt like this was it and sent us to a neuro. His bloodwork also showed possible celiac, so we went to a gastro doc (he felt there was a slim chance he had celiac.) By the end of Oct. we saw Dr. Latimer. He was treated with steroids and Augment 475mg with not much improvement. She ordered more blood work, but I not sure if our local lab sent it to her. My ped. office told us it was negative, but I have never seen any numbers. (This drives me crazy.) Dr. L also recommended his tonsil/adenoids come out, so that was done at T-giving. We went a few weeks without abx, but by mid Dec. he was back on them. We saw some improvement after the surgery, but at Christmas he caught a cold and things got worse. He has pretty much been washing his hands ever since. Dr. L. saw him at the beginning of Jan. She didn't like the looks of his hands, and the fact that he has lost weight. Food makes him "sticky", so he doesn't want to eat. In the past week, his compulsions have quadrupled, probably for a number of reasons...slight cold, stopped Prozac due to lack of inhibition, and we sent our daughter to live with my sister (the strain had gotten too much for her). I am lucky to get one meal in him (usually soup), and we are attempting to keep weight on him with unlimited milkshakes. He was going to school, but hardly in the past 2 weeks. Luckily, I took a short leave of absence from work for the pex because otherwise, I would be able to go. I hope we can make it to Tues....I'm afraid if we can't do the pex we might end up at a psyche hospital. We had to call the on-call doc on Sunday, and she gave him Ativan, but I can't say it helps. Benedryl does just as well, and I feel safer using it. His psychiatrist gave him Depakote to start after the pex, but I'm tempted to go ahead, especially if the pex isn't happening on Tues. Ugh...now I think I have moved from his history to complaining. Sorry!!

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I really hope your insurance comes through. I know how you feel- my dd (age 6) had pheresis this fall, and we are now considering it for her sister (age 9), but have to get through a lot of insurance hurdles.

 

I will say, for my dd, it gave her instant and total relief from all of her pandas symptoms. It was a miracle. It was not a cure, she had a relapse a month later post H1N1- but with the FAST use of steroids, she has now maintained a 90% remission for over 2 months. Every day I feel she is stronger!

 

In my opinion, the pheresis is a stressful few days, but unbelievably worth it compared to what these kids go through.

 

Advice: Hmmm- first of all, feel free to PM me with any questions you have.

 

I assume you are staying at the hospital with him? It isn't luxurious (rather bare bones and old), so if you could, I would consider bringing yourself a blanket and maybe a pillow, and flip flops for the shower.

 

My dd was a really picky eater- so I brought some of her favorite foods- which was helpful.

 

Make sure they run an IV of fluids at least the few hours before the pheresis, each time. They were a bit haphazard with this for us, and when they didn't, she started to crash and we had to halt the procedure to give her fluids.

 

Ask them if they can do her vitals and blood test (or whatever they need) at 9pm and in the morning, so as not to come in during the middle of the night. Only the nurse the last night thought to do this for us.

 

Calcium is good for them- so while you are there continue loading up on the milkshakes.

 

They have very useful child life specialists- make use of them to entertain your son during the pheresis, and if you need a break.

 

Although the doctors didn't request it- I kept my dd home for 2 weeks after the pheresis. If I did it again, I might even keep her home longer. She was very pale and tired after. But happy.

 

Good luck- please keep us posted.

I used benadryl for a few nights after the procedure to get her to sleep on time.

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forjpj,

sorry, you've been thru alot.

could I ask why they recommended the T&A, you didn't mention sore throats or strep, does he get that? or is it mostly other illness that seems to trigger? Is Dr. L. the only doctor you've consulted with? may I ask why she recomended PEX first, will that be the only treatment right now?.... my son is quite thin and Dr. L. commented on that as well. my son is mostly tics and some ocd. does your son have/had any tics?

 

Faith

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Hi

 

My son had PEX last August. He saw great results for a few weeks and then had pretty much a complete regression, so your question is near and dear to my heart. If I had it to do over again, these are the things I would do. I'm not sure that all of these are necessary or beneficial, but since we don't exactly know why he regressed, if I could go back in time I would make sure to cover all my bases.

 

1. Full strength antibiotics leading up to, during and after the PEX for an extended period of time. A year? Until puberty? Adulthood? Don't really know.

 

2. Get teeth checked prior to PEX to make sure no cavities or infections, and to avoid needing a cleaning for 6 months or so after PEX. My son had a tooth infection that was discovered a few weeks after PEX and conincided exactly with his backslide. I've gotten differnt opinions on whether or not it was a contributor, but personally I am convinced it played a role.

 

3. No vaccinations for an exteneded periord of time after PEX

 

4. If at all possible, follow up PEX with IVIG. We did a phone counsult with Dr. Kavocevic out of Web Pediatrics the other day, and although I'm convinced that even he states some of his opinions as fact, he was adamant that without IVIG, no cure for PANDAS. Also, and I hate to say this, he does not believe that PEX is the correct procedure for OCD predominant cases. He says for TIC predominance it is good, but only if followed by IVIG. The thing I will say is that from our own experience, and others I have seen on the board, even for the OCD kids you get a quick resolution of symptoms via PEX. Just make sure you do everything you can to keep the benefits.

 

In hindsight would I do PEX over again? Tough, tough question. To be honest, I think I would becasue of the quick dissappearence of symptoms (still took a week or so for us) but I would do the above items as well. Also, it might be worth a few e-mail exchanges with Dr. K even though I have no doubt he will say PEX is the wrong move, you could at least get his perspective on when and how to do IVIG. I hate to add stress here or cloud your decision but I wanted to give you an honest answer.

I posted a description last August or early Septemeber about our experience in the hospital. You can use the My Assistant search to look for it, or just scroll thorugh old posts from that time frame if you'd like to read our description. Good luck and please PM me if you want to ask any questions.

Alex

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Thanks everyone for the information! I think I will start writing it all down so I can organize it in my thoughts.

 

Faith - you asked about sore throats....I forgot to include he had scarlet fever when he was 2. And last year, he had recurrent sore throats which never tested positive for strep. He also had a history of snoring and waking up very tired in the morning...so the ENT decided to remove the tonsils/adenoids. Dr. L is the only doc we talked with. She felt things were getting too bad too fast...and since the antibiotics and tonsil removal didn't help...she felt pex was the way to go.

 

 

More and more, I'm thinking I want to follow-up with an IVIG. I hadn't talked with Dr. L about it. Do you think she will even consider it or will we see another doc for that? My son is definitely more compulsions than tics, but he has had both.

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My son has had two rounds of plamaspheresis. The first time was in the summer of 2008 through Dr. Elia at CHOP and the second time was in October of 2009 through Dr. Latimer. I strongly agree with what Alex says about the importance of full strength antibiotics before, during, and for an extended period of time after the procedure. We saw partial results both times, and it did seem to be somewhat helpful with OCD, mood, attention, and most of his other issues. If I had to do it over again, I would have had him on full strength rather than just prophylactic antibiotics, and I would have considered following up with IVIG within the first month after the plasmapheresis. Dr. Latimer may be willing, and I think it is worthwhile to have a conversation with her about it. In our case plasmapheresis has been helpful but not a cure and our next step will be monthly IVIG (hopefully starting in February) with Dr. Bouboulis. In my son's case the OCD is not gone, but he complains about it less. I think the plasmapheresis played a role in decreasing the intensity of his OCD and other symptoms, but there was a much more obvious improvement once he got on full strength Zithromax in early December. I just keep wondering if we would have seen even better results if he has been on this dose immediately following the procedure.

The hospital staff at Georgetown was very helpful and attentive during my son's entire stay. He liked the docs and nurses very much, and the child life specialist was frequently checking in on him to see if he need anything.. There was one day when she brought a dog into his room and that was a real highlight for him. Also, we were allowed to bring food in for him from outside the hospital, which was very helpful since he is on a gfcf diet. Overall our experience with the hospital was positive, and I appreciated that the doctors and nurses believed in PANDAS and were good about explaining things and addressing our concerns. Best of luck.

 

Ellen

 

Thanks everyone for the information! I think I will start writing it all down so I can organize it in my thoughts.

 

Faith - you asked about sore throats....I forgot to include he had scarlet fever when he was 2. And last year, he had recurrent sore throats which never tested positive for strep. He also had a history of snoring and waking up very tired in the morning...so the ENT decided to remove the tonsils/adenoids. Dr. L is the only doc we talked with. She felt things were getting too bad too fast...and since the antibiotics and tonsil removal didn't help...she felt pex was the way to go.

 

 

More and more, I'm thinking I want to follow-up with an IVIG. I hadn't talked with Dr. L about it. Do you think she will even consider it or will we see another doc for that? My son is definitely more compulsions than tics, but he has had both.

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Hi, my son had PEX through Dr. L in late October and like others on this board I saw immediate obvious improvement that restored peace and hope to our household. I would do it again in a second. I had the benefit of hearing about others' experiences with setbacks/relapses following reexposure, so I took the following steps:

-- daily antibiotics (which at the time Dr. L was not recommending, she thought prophylactics were enough... she may have changed her procedure)

-- removed him from school.

 

By keeping him isolated, we prevented a relapse (except minor behavior changes when exposed to a cold).

 

A few months later we consulted with Dr. Bouboulis (in CT) for IVIG.

 

He did his first IVIG 3 weeks ago and is doing another next Wednesday.

 

The IVIG completely destabilized him. That's been hard to watch. But it's worth it if it leads us to a real cure.

 

Good luck. You can also PM me if you have any questions about the hospital experience. My biggest problem with it was the guilt at consuming that much health care, but then I have a guilt problem. (I am PANDAS too.)

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My biggest problem with it was the guilt at consuming that much health care, but then I have a guilt problem. (I am PANDAS too.)

 

You would consume more health care/resources if you didn't treat and your son ended up in a mental institution (or jail).

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Unlike some others, we saw destabilization for the first few weeks following PEX in August 09. He was way worse at first and I was beside myself. But then he greatly improved and (knock wood) we haven't seen any tics since. (he had horrible motor and vocal tics).

 

He has however, had one minor and one medium exacerbation since. Neither one was because he got sick, but because he was exposed to someone who was. After the first post-pex episode, we went to a permanent higher-dose abx. But that didn't prevent him from being exposed to others. We brought the second episode under control with prednisolone. He now appears to be so "allergic" to strep that he's like a kid with a peanut allergy who needs to sit at a peanut-free table - that even being near strep causes issues. IVIG is a consideration, but there've been so many mixed results on the forum lately that we're waiting to see how things shake out. We're very encouraged to have the doctors starting to consult with one another.

 

Post-pex, our major issues have been OCD and ADHD but no tics, anxiety, mood lability or muscle/joint soreness. So pex did help. I have no regrets. But it was not a cure (but my son was also constantly sick for almost a year, so that could be a factor). I agree that the steps you take post-pex are important to how effective it may be longer-term. I think your biggest challenge in doing Pex in February will be trying to keep your child healthy afterward.

 

I wish you all the best - please PM if you have any questions.

 

Laura

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Our 11 year old son returned from Georgetown plasmapheresis treatment on 1/28. I was not there, my wife and her mother were with him...but I kept up with all the details. Everything went really well and we were very pleased with the staff at Georgetown. His consultation was last Monday at 11:00. They drew blood to get a baseline for proteins and calcium. These 2 elements were monitored over the next three days. If proteins are too low, they will choose to wait a day for another treatment. On Tuesday, he was sedated for about an hour while the central line was put in his femoral artery. After about 3 hours of recovery (around 3:00), they started the first treatment. The pheresis treatments take about 90 minutes. He did not have any reactions, all went well. They drew blood at 5:00 am the next morning and blood proteins were checked again. They were a little low, but were enough to do another treatment on Wednesday. All went well again. He said he could not feel anything during the treatment...was even trying to teach his mother how to play chess during the treatment! Drew blood again 4:00 am on the 28th...all good, had another treatment that morning. His central line was taken out around 2:30. They had to monitor him for 4 hours for bleeding...so, were not able to leave until 6:30 (in DC traffic)...got home around 11:15 Thursday evening.

 

Getting the line taken out was the worse part my son said. And he has had to take it easy with his leg over the past few days...we're snowed in anyway (no sledding for him).

 

His main issues are tics and chorea like movements, especially in the evenings. We already estimate a 50% reduction in tics since plasmapheresis. And his personality and sense of humor are back 100%. The treatments were definitely worth it...and we are hopeful his symptoms will decrease even more. We are a bit unsure what to do next...as parents have posted, may be best to keep him home for a while, (snow will close schools around here for next 2 or 3 days). He is on 250 mg penicillin a day, but nothing stronger. Will he need IVIG in the future? Not sure.

 

Further note...we inquired into the type of "plasma" that is used at Georgetown...a pheresis nurse even gave my wife the literature that was with the plasma bag. It is called AlbuRx 5, "albumin (Human) 5% solution". So, from my understanding, it is 95% synthetic, 5% sterilized human albumin. The plasma that is spun out of the patient's blood is the same volume that goes in from the AlbuRx 5 solution...so it is an "exchange" of plasma, but is mostly synthetic.

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Further note...we inquired into the type of "plasma" that is used at Georgetown...a pheresis nurse even gave my wife the literature that was with the plasma bag. It is called AlbuRx 5, "albumin (Human) 5% solution". So, from my understanding, it is 95% synthetic, 5% sterilized human albumin. The plasma that is spun out of the patient's blood is the same volume that goes in from the AlbuRx 5 solution...so it is an "exchange" of plasma, but is mostly synthetic.

 

I'm glad you saved your questions for the Georgetown staff and were successful with obtaining treatment and benefits.

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