pepper1
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Posts posted by pepper1
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Anyone with a PANDAS teen with Severe OCD? My son has been suffering with PANDAS for 5 years, he's 18 (suddenly sick at 13 with a strep infection) and now living in a residential school. I thought we were finally on the right track..he started speaking a little more, and finally is taking his antibiotics but recently he started to decline more (he's already very disabled). Now he won't leave his room, has stopped eating and can't sleep. Stands all day. I feel that he needs to be physically moved from the room..just to help him get past this point but staff are hesitant. Not sure what other options we have but can't give up on him. He's had many IVIGs with no real lasting improvement. SSRI's did nothing but make him aggressive. Recently, we changed the antibiotic from Keflex to Zithromax, hoping for a faster improvement, and everything fell apart. He's back on Keflex and motrin for over a week and still no improvement. Very worried
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Your son sounds alot like mine—mine would definately pull the line out. We were hoping they would sedate him the whole time but I guess eveyone thinks that its too much time under.
We've been down to NYC to see Najjar. He recommended PEX but the neurologist in NH we're seeing isn't comfortable doing it. SO we're hoping someone at Tuft's or maybe Najjar will try. Initially, we saw Drs. Walters and Williams at MGH. They wanted to do PEX but the hospital said no, and, at that point he wasn't aggressive. In fact most of the treatment plan they had suggested was dienied by MGH. We should have left there earlier but at that point I didn't realize the politics invovled.
We've had some luck with Benadryl too. So, I've been thinking about trying another, longer term H1 blocker. I spoke with the nurse at Moleculara Labs (My DS did the Cummingham panel) She mentioned some folks are having luck with H1 and H2 blockers...so worth a try given our slim success with benadryl.
For Nitshel—Dr. Najjar, and Duke never said tonsillitis before PEX. I'd get another opinion if it was my kid before a surgery.... given the sensitivty of these kids and the difference in opinons of all the docs. weve spoken to. UGH
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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.
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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?
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Did you try Jennie Francovitch at Stanford? Shes done PEX for teens with PANS in the past. Read this link,
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Maybe your dealing with Autoimmune enchephalitis?? Have you looked at AEalliance.org? I think all of these PANs cases are some sort of subacute encephalitis...with the more acute cases involving a lingering encephalitis. Look at pandas network.org for their explaination on encephalitis.
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He did 60mg of Prednesone for 2wks and then tapered down for 2wks. He was positive for strep and had high b titers. Looked like hashimotos en. as well, but now its come down to borderline high-normal. He was negative for Anti-NMDA. Had west nile virus but only in blood not in the Spinal fluid so Dr. Pasternack said it's not an issue.
I just watched the video..maybe the PEX would be a good idea then? We tried through Mass General/Boston since Dr. Walters recommended it at first but she wasn't able to get it for us.
I've just started reading this forum--folks are trying so many different things. How does everyone learn about all of this? None of the Docs have even mentioned vitamins or probitics..ugh
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Thanks--nice to know there are other teens out there dealing with this. May I ask how many rounds of IVIGs did you try before you saw improvment?
We tried a course of steroids in August but only a tiny improvement. The doc is suggesting we try it again, maybe a different steroid. We're thinking about going down to Dr. L for plasamapheresis.
My DS dosen't really speak anymore (except to himself) and I can't tell if its "seletive mustism" or difficultly with forming words. He won't get dressed /washed up without a lot of help. It's about a 2 hour process just to get him down to breakfast . We think we have the right docs now but...its taking so long!
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searching for Help,
I was just reading about HPHPA yesterday for the first time. This is a simple urine test correct? Our pediatrician is very nice but not helpful --has told me "this PANDAS stuff is out of his league". Would an Infectious Disease doctor order this test? Can you tell me what type/specialty doc you are working with? My DS has many intrusive thoughts. It wasn't this way when he started, it was more chorea then but this changed around the time the Neuro tried Tegretol on him. They are recomending a 2nd IVIG. Insurance does pay but I'm worried about wasting time going down the wrong path.
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I've never posted before but DS14 had a very bad day...so desparately looking for answers. He's been sick for 9+ months now, not able to go to school this year.
He's 4weeks out from his first IVIG at MassGeneral (insurance covered it!) and not much better. Tics/chorea seems less but he's in another world. Curious if others with a teenage are seeing lots of intrusive internal thoughts. He was dx with Sydenham's Chorea--could be "on the pands-sydenham's spectrum" Swedo said she'd treat it the same anyway.
I'm interested in what you're doing for fish oil, C, E, folic acid, etc? Does Dr. K recommend vit B complex? We doing Aug 500 2x/day, multivitamin. Also trying to follow a gluten free diet but its VERY hard to get a teen to comply with that.
how do we treat my son if he can't leave my house?
in PANS / PANDAS (Lyme included)
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rhyanen, I've been reading your older posts..your son sounds like mine. He's 17 and won't leave his room, OCD and anxiety are so high. We're using antibiotics and ibuprofen. We tried Zoloft, made him aggressive and aggitated. We tried IVIG and IV steroids, didn't hold. Now I just want to get him out of the room to go for blood work. How did you finally make progress?