oivay
-
Posts
157 -
Joined
-
Last visited
-
Days Won
1
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by oivay
-
-
We had very good results from PEX, which we did through Dr. Elia at CHOP about 2 years ago. We also used Dr. T. You could absolutely see a difference by the 2nd treatment. (She was diagnosed with both Pandas and Sydenham's chorea, but the majority of her symptoms were debilitating chorea.)
My daughter has been symptom free since, although she's still on abx, but it's getting to the point where she is refusing to take them due to gastro issues.
We had tried pretty much everything before that, abx, steroids, all sorts of drugs, etc., and then tonsillectomies on both kids.
We also did some physical therapy afterward as her leg had become kind of twisted from all the choreiform movements.
I'd do it again in a second if we had to. It was covered by insurance (Cigna).
-
Just kind of tossing this out there....
My daughter got way worse on augmentin.....within about 12 hours her tongue started swelling, throat started to close. It turned out she was allergic to it. I don't think the augmentin actually made her worse, I just think it was completely ineffective, so things just kept progressing.
She responded very well to zithromax, and then when that stopped working, prednisone burst and clindamycin, which worked very well the next two times. Biaxin/medrol combo gave her truly horrendous diarrhea, so we had to stop it within about two days.
I've never seen this mentioned here, but she'd also had a history of cat scratch disease when she was much younger, which cleared up with a round of zithromax.
-
Oivay
Did you mean to say "some overlap"?
yes....oops!
-
My daughter was diagnosed with both Pandas and Sydenham's. (We used Dr. T, although she saw a few others too.)
She had a fairly long history of documented strep infections (at least 2 years). Cunningham test showed Pandas, not Sydenham's, but almost all of her symptoms were chorea. I think the more educated doctors realize that at minimum there is so overlap between the two. She has been fine since Pex, almost two years ago, but still gets pretty severe headaches from time, which seems to be common for SC kids.
-
It is interesting how it happens about two weeks after they start school. Maybe it's just because they're all together and swapping germs in such a communal setting.
I totally agree that the response would be different if they were all boys.
Looks like Mechtler is on the case again and misdiagnosing.....
-
Mechtler really is a one-trick pony, isn't he?
I'm honestly shocked that parents will still take their children to such an idiot. And that he gets paid for it.
-
It looks like things may be starting again upstate.
My mom called me to tell me that apparently some more kids have been diagnosed with a "mysterious tic like illness" as it was on the news up there.
It should be interesting.............
-
Both kids were on zithromax for about 10 days prior to surgery and 10 days after. As soon as we stopped the abx to go back to the twice weekly routine, she had a major relapse and antoher episode of debilitating chorea. Her neuro said it was the result of bacteremia from the tonsillectomy. Her symptoms were almost always more chorea-like than Pandas, although she had some Pandas symptoms too, but the Cunningham test showed Pandas. Her tics/chorea were so bad that she was unable to walk or read. Her neuro said the inability to read was because her eyes were oscillating in a different direction than her head/neck area was. It was horrendous, to the point where she was using a walker and wearing a neck brace.
During her severe episodes, we also tried clindamycin and steroid bursts, which did work the first few times. We also tried depakote, which actually made her worse, and tegretol, which helped slightly but made her sleep literally all day and put on 12 pounds during the 2 weeks she was on it (and she only weighed 85 pounds at the time). We also used valium, which would take the edge off the tics enough for her to sleep and not jolt out of bed. Also used biaxin & medrol at one point, but it gave her such severe diarrhea we had to stop.
She never really had any OCD, but she did have one episode that was almost like paranoia when both of them got sick. This resolved with a double daily dose of zithro for about a week.
She is still on zithromax, although she is very resistant to taking it because it gives her gastro issues, but at this point, we don't really have a choice.
I would absolutely do it again if necessary. We did it on an outpatient basis at CHOP via arm veins.
-
We did PEX at CHOP for my daughter, who was 11 at the time, a little over a year ago. It completely got rid of her tics/chorea, and was noticeable by the 2nd treatment. She has been symptom free since (over a year ago).
We had tried just about everything before that, including tonsillectomies on both of my kids. Their tonsils also looked normal, but were riddled with puss when removed.
I would do it again in a heartbeat. It was the only thing that worked. We did not do IVIG at all, and no one even suggested it. She is still on zithro 2x/weekly, they said for at least another 8 years or so.
She was dx'd with Pandas and Sydenham's chorea.
-
Let me just share my menigitis vaccine story with you.
My daugther had to get it before entering 6th grade. I was ok with it as I felt the need to "protect her brain" after she'd had a severe pandas/chorea episode and had been symptom free for about 3 months. She got the vaccine, and in less than a week began showing symptoms of another pandas/chorea episode, which got rapidly worse within a week. To be fair, at this point, within a week of her getting the vaccine, both of my kids tested positive for strep, which was quite obvious at that point, even before they rapid tested them, which were both immediately highly positive. Ped immediately put them both on suprax, which cured little one, but older pandas kid declined rapidly to the point where she was immobile with severe almost total body chorea. Neuro immediately put her on clindamycin and prednisone, and ped threw in some valium. She was back to normal within a week.
I'll never know if it was the strep that touched off that episode, but the timing was so coincidental I still wonder about it. Dr. T said absolutely no more vaccines, which is a moot point now as she's had them all, but I'd never get her another vaccine.
-
My daughter was ultimately diagnosed with Pandas and Sydenham's chorea.
During the first episode, she had mitral valve regurgiation. They said there was no way to tell if it had been present before the health issues started as she'd never been tested for it before she got sick. We went to the cardiologist several times over the next two years. After the first two or three visits, cardio said "she's a perfectly healthy child" and we went back about 8 mos. later for a check up. We weren't going to go back, but got a letter from her office that she should come in for a checkup. (We hadn't seen her for over a year at that point.)
We just saw her again in April and she said my daughter is perfectly fine and doesn't need to come back anymore. (My daughter has been symptom free since getting plasmapharesis in 2011 and is still on zithromax, probably for at least 8 more years.)
-
Our pediatrician was initially very sceptical too. We also went through all sorts of testing and they diagnosed her with everything from a UTI to a conversion disorder.
It was only after the Cunningham test results that her regular doctor came around. It also helped that saw not one but two Pandas experts who said she absolutely wasn't crazy. She now watches my daughter like a hawk every time we go there. If you're in NJ, I can tell you that there is one children's hospital you absolutely should not go to (It's in Morristown).
This is one situation where you really truly need someone with experience and intelligence and who won't just allow the kid to fall through the cracks.
-
My daughter did have what I guess you could describe as hallucinations one night. Both kids had just had some sort of viral thing, and she suddenly became obsessed with the idea that the stripes on the floor were going to get her. (We have hardwood floors.) She was absolutely terrified of stepping on the floor and made me carry her, which wasn't easy. I had to spread comforters to make paths for her to get to her room. We doubled her dose of zithromax so she was on 2 per day for about 10 days and loaded her up on motrin. The hallucinations had stopped by the next day, but then she began stuttering, which lasted almost a week.
I have heard of one other kid who also had pandas & sydenham's having pretty severe hallucinations. Both of them are pretty much normal since having PEX.
-
It's been a long hard road for us, but my daughter has made pretty much a complete recovery.
We went through h*ll and back though for about 18 months straight. Initial diagnosis of mesenteric adenitis, then ticking which rapidly became severe chorea. Tons of visits to various ERs, tranquilizers, abx, depakote, tegretol, valium, zithromax, clindamycin, biaxin, medrol, prednisone, PT, a few psychiatrists, cardiologists, gasroenterologists, tonsillectomies on both kids, brain MRI under general anasthesia, several bouts of severe and debilitating chorea (to the point where she was unable to walk or even read) , various blood tests, including the Cunningham test, and finally plasmapharesis. She was diagnosed with Pandas and Sydenham's.
She missed so much school they almost held her back, but didn't because she was in the gifted program.
I think the hardest part for me was when the kids in her class made her a bunch of get well cards, and when I asked about one of them that was from a kid I didn't know, she said "that's from Cameron, but we don't talk anymore." When I asked why, she said "because when I went back to school, she said 'Hey, your're back! We all thought you were gonna die."
She has been pretty much fine since the PEX. She's still on zithro 2x week, and still gets headaches, but otherwise seems healthy. This is the first time in almost 2 years that she has only missed a couple of days of school and is going to try out for track next week and then swim team. She has finally gotten her grades back up to where they were before it all started and is quite a social butterfly.
It is possible to survive this mess. I still run her to the doctor for a strep test everytime something goes wrong, but so far they've been negative. I practically go into crisis mode every time she sneezes, but I'm getting better about that.
-
The dental stuff is interesting. My daughter had all sorts of dental issues, including a root canal at 8.
As far as the tartar control toothpaste goes, years ago my brother had a nasty problem with his gums. He was in his 20s at the time. His dentist told him absolutely not to use tartar control toothpaste because it sometimes produced a reaction in some people. He stopped using it and his gums went back to normal.
-
I just wanted to add that I also work in schools, and the few times I have been in the kids' bathrooms, they were far cleaner than the teacher's bathroom.
The teacher's bathroom is probably cleaned once a day, and sometimes overlooked!
The kids' bathrooms are usually checked at least a few times a day and restocked, mopped, etc.
And the bathrooms I have seen in disabled classrooms were usually immaculate.
I have never seen a kid allowed to use the teacher's bathroom, and I don't think they'd even want to. Principals (at least in the schools I've been in) usually use the nurse's bathroom.
I understand why you don't want your child around other sick kids in the nurse's office. In our case, the school nurse was actually familiar with Pandas and was one of the first to suggest it. She tried to keep my daughter as far away as possible from anyone she thought was infectious (she got to know all of the diabetics in the school), and if she(nurse) had any suspicion that something was going around, she would call me and tell me to come get her.
-
I know exactly what you mean.
I remember seeing a flier for a Pandas support group when we were in the midst of horrendous problems, and thinking "How in the world can a parent of a Pandas child possibly find the time to go to a Pandas support group?" although I thought that truly no one need a support group more!
-
Some of the tests come back quickly, maybe a day or two. Some take around a week.
My insurance paid for them all through Quest. We had the pediatrician do the blood when she could, but we had to go directly to Quest for some of them.
-
Yes, my daughter had pretty much only tics/choreiform movements, which later turned into full blown chorea.
-
In our case, each exacerbation was worse. The first one was pretty bad though, and lasted the longest. But by the time the second one rolled around, we and her doctors were better able to treat it and pretty much knew what it was.
The third one was pretty bad, but initially responded to treatment. By the fourth time (which was an extension of the third time), I think we were more "accepting", and knew what to do, but it was also clear that it wasn't going away this time. That's why we did the PEX.
-
I could actually pinpoint the day, the hour, and even the minute the severe symptoms started. It was unmistakeable. She was 10, in the middle of a restaurant, and starting "shaking", completely unable to stop. We immediately went to the ER. They gave her 3 shots of Atavan, which made no difference, and said they had absolutely no idea what to do.
But, in retrospect, there were all sorts of things that happened before that. Now, I know that these are consistent with Pandas, but at the time I didn't.
I think each presentation is different, but as a parent, you know when there is something severely wrong with your child.
-
I was always pro-vaccine before all of the Pandas stuff started. That being said, I would never let either of my kids get more than one vaccine at a time, long before I even knew Pandas existed. I just felt that there was enough controversy to take it slowly. The doctor would always give me some sort of lecture, but I blew her off and said "I'll just pay the extra copay, I don't care. But there's no way you're giving her more than one today." She gave me dirty looks, but oh well..........She pretty much thought I was crazy, but it wasn't her kid.......
My daughter's second episode of severe chorea/tics started less than a week after she rec'd the meningitis vaccine (which is required here for school,and at the time, I was ok with it). Both kids tested positive for strep that time. Was it a coincidence? I don't know. But she went from being symptom free for months to a guerney on the ER pretty quickly, and in the back of my mind, I will always wonder. Neuro said no more vaccines, ever. The timing was awfully suspicious, and there is now enough doubt in my mind that I don't think I will ever let her get another vaccine.
All that being said, I had to recently update my tetanus shot due to an incident at work, and did, and she was ok. I also have to update my hepatitis shots for the same reason, but I am waiting a little longer on that. I didn't notice any exacerbation with daughter when I did this.
Younger daughter will need additional vaccines in another year or so, but again, I will space them out.
Overall, I generally do believe in vaccines for overall healthy people, like me, but Pandas is a whole other ballgame, and I think it really, really, really, requires serious consideration. I totally understand your hesitation.
-
We do zithro 2x/week.
Had Pex last year.
I don't dare stop, but she does forget sometimes. So far, we've been ok.
Regular doctor and neuro both say abx. until at least the end of high school.
-
I was also unpleasantly surprised with the quality of the reporting.
They don't even mention Dr. T until almost the last page and basically discount everything he has to say. The completely overlook the blood work.
They also seem to be going out of their way to suggest that these kids had horrible home lives, live in a horrendously bleak town, have unbelievable amounts of stress, and with lives like these, it's no wonder they all have conversion disorder. Most kids in America have lives like this, and often far worse, and yet this is the only place on Earth where everyone falls victim to conversion disorder?
Are there any PANDAS kids thriving?
in PANS / PANDAS (Lyme included)
Posted
My now 13 year old daughter is now pretty much normal. It was sheer ###### for almost 2 years though, but the PEx made a world of difference for her.
Her grades never came back up to what they were though, but I think that's because she has become almost hypersocial lately, especially since she started middle school. I think this is because she missed so much school and social activities/sports, etc. Also, she spent most of last year "catching up". Her school nurse told her that they had actually considered holding her back in 6th grade because she had missed so much school (about 60 days), but didn't because she was in the gifted program and they thought she would catch up, which she did.
I probably should be more vigilant about monitoring her academics, but at this point I'm so glad she hasn't had an episode in a while, I've become far less diligent.