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Everything posted by tpotter

  1. If it lowers testosterone, should it be given to a teenage boy (like mine...I know your children are younger)? (Just a thought :-)
  2. Is anyone else having trouble with voting? It says the password or email address is wrong for my husband and children. I sent in yesterday to reset the passwords, and never got to vote yesterday. I reset them this morning, and it's STILL telling me it's wrong! But, it's taking mine!
  3. I'm praying for you. I went through something similar, but nowhere as bad, with my, then 15 y/o DS. But, we didn't know until several months later that it was even PANDAS. Became suicidal (he's had other outbursts, where he wanted to kill us, and the rest of the family had to leave the house overnight.) After the 1st hospitalization (anxiety meds did nothing), we got very lucky, several months later, and found Dr. K (we use Dr. L. now, because she is so much closer, and both are equally great.) We found him because of our other, more "classic" PANDAS kid. Because of him, we finally have a dx, and are being treated properly. Good, good luck.
  4. I don't care what others say, but this is exactly why this country needed health care reform. Unless you find yourself in these kinds of problems, you can't even begin to imagine what it's like! And, I know my children are going to be very difficult to insure when they are adult. They'll be able to get insurance (because of reform), but, again, at what cost? Good luck. Keep is informed.
  5. Dr. Bouboulis ( is not a neurologist. He is an immunologist, and has a very good reputation from others who have used him (we haven't.) I have had experience with Dr. T, and although he is really very smart, we have had a major problem with him, one of which was being unable to get hold of him at all afterwards, and my son went for months with no tx (I understand others are having some problems with the same thing.) Personally, I prefer Dr. Latimer in the Washington, DC area, and Dr. Kovacevic (in Chicago). Dr. L. is a ped. neurologist and Dr. K. is a general pediatrician, who has been working with PANDAS longer than just about anyone else we know. But, as I mentioned, Dr. B. has a very good reputation. You may want to confirm for PANDAS by sending away for blood testing from Dr. Cunningham in Oklahoma City (BTW everyone reading this...I just checked with her assistant after the tornado, and they're fine.) She is doing research on a test that shows how blood from a child with presumably PANDAS (it's still in research) interacts with CamKinase (a protein) in the brain. It's believed to be quite definitive. If you look at the beginning of the forum (top, above the line,) there is a list of all the drs. who have been identfied by other parents. Dr. C. is on the list with contact info. Good luck with this. It does get pretty daunting. Good luck, and keep us posted.
  6. If she has PANDAS, you will probably want to do a T & A, because the strep can get stuck there, and not be visible. All our PANDAS docs that we've been to said to do it, and we did.
  7. My younger son is the one with "classic" symptoms...came on suddenly post sinus infection, tics, ocd, rages, anxiety, etc., etc., etc. When his older brother had severe psych symptoms last year (hospitalized), and all they did was put him on anxiety meds that did nothing, that was our first indication that there was a problem. BUT, we still didn't suspect. doctors thought he was bipolar at that point (he's also dx with Aspeger's, and HAD been tested by Dr. T....ASO and AntiDnaseB previously...not high). Things got worse that year. Then, we found Dr. K, and his paper which talked about PANDAS in adolesc, and adults. One of them sounded just like my son. We were on a plane shortly thereafter to Chicago. He confirmed the dx of PANDAS. Then we found Dr. Cunningham, had BOTH kids tested, and, yes, he's positive. Had PEX in September. Doing infinitely better, but symptoms starting to come back (he's on the list to repeat.) He had strep constantly as a young child, and also had an allergic reaction to the Mumps vaccine (broke out in hives.) He did not come on suddenly, as far as we know, but then again, the dx of Asperger's, positive hx of strep infection, family hx, and family hx of autoimmune illness, pretty much confirms it. Also, since symptoms are returning, and there is a question again of whether or not it is PANDAS, I repeated Dr. C's test. CamK is about 134, which is in the PANDAS range. So, no, didn't test younger sib, but did test older sib, and he is positive. Good luck
  8. Typically, we are told to give our children benedryl (oral) with IVIG. This will help keep down any allergic symptoms. Even if it is a contact dermatitis, it can't hurt to give him benedryl. I would also recommend giving him the stuff without dye (the dye in regular bendryl can cause reactions, itself.) I don't know how old your son is, but I suspect young, because you mentioned the recall, and I think it was just the pediatric formulations of medications. Anyway, I believe that the pediatric bendryl is just 1/2 the dose of regular bendryl. I remember seeing today, in fact, that children's benedryl is 12.5 mg, whereas the adult dosage is 25 mg. If the pediatric formula is recalled (I don't think it is, though), just cut a regular dye free bendryl in 1/2. We've actually been doing that for our dog, because he gets too drugged up with full strength, and needs it. Keep in mind that this time is year is "murder" with allergies. So, whether it's IVIG or something else causing it, Bendryl is usually the tx of choice for allergies (our doc has always said to keep it on hand.) BTW, you said it didn't seem to be doing anything yet. What was the dosage of IVIG? Let us know what happens.
  9. This is awsome. I just voted for my entire family! Anyway, could you please keep bringing this up to the "head" of the posts, so it reminds us to vote each day (I didn't see it yesterday, and forgot to vote.) Thanks.
  10. I can't agree more with getting him to one of the PANDAS docs. I now it may be a bit overwhelming if you don't live near them, BUT, trust me...it is very well worth it. BECAUSE, if you get it early, it usually responds beautifully to the right antibiotic, and the proper dose (you can't just assume it is gone, and these docs know what they are doing!) PANDAS is caused by the same bacteria as Rheumatic Fever, only it affects the brain. The fact that you caught it early, and had the advantage of getting right on it is huge. As another parent has already noted, many of us have been dealing with it for years, had no dx and/or improper tx, and we are dealing with a whole different ballgame. When I finally found a doc from this group who knew what he was doing (Dr. K, who is in Chicago...an airplane ride away), I immediately made a phone consult with him, and after which, he was willing to consult with our local doctor. But, our doctor was not willing to keep prescribing antibiotics (which other families have found happen), and I immediately booked 3 tickets (both of my children have PANDAS...Dr. K. figured out the connection with the older one, who looked like he had Bipolar!) We now use Dr. L, because she is only a 3 hour DRIVE. Trust me, and all the other parents who have commented, don't wait. The OCD and tics very well may be PANDAS, particularly in light of the fact that there was a strep infection. If that's the case, you my not have to deal with the psych drugs (they don't tend to work on PANDAS cases, anyway.) Good luck.
  11. Thank you so much for sharing this. This gives me such hope for my 14 and 17 year olds, and I will share your post with them. I remember my 14 year old, after PEX last year, had a serious anger episode. I say anger, because in the past it was always a rage. Even though it looked the same to me, and I ended up with a possible fracture in my arm from it, he said afterwards that it was really different. He said that he had never felt that way before, and although he got really "angry" (his words), it was one he knew he could control. He said the rages in the past (and recently showing up again) were "adrenaline rushes." So, you're very right that there are differences...some you can control and others not.
  12. Write a letter to your state insurance commission with all supporting documentation. The 2 times I have had a serious problem with our insurance company denying something that shouldn't have been denied, I wrote a letter to the State Insurance commission (happened to be in 2 different states, and nothing to do with PANDAS) and as soon as the insurance company heard from them, they (the insurance company) called me, and said something like: "You will be very pleased to know that we have changed our mind!" Let me know if it works, because we are still needing to do IVIG on both our boys, and we have BCBS, as well (haven't started the insurance process yet, though.)
  13. Yes...I suspected we have ALL felt that way (certainly speaking for myself, I was jumping for joy that it was something that could possibly be treated, and that my son finally had something we could identify!) If you suspect your younger child might have PANDAS symptoms, I would get him to the doctor extremely fast, and make certain that the proper abx are started immediately, and continued until it is gone! Good luck.
  14. Both my DS have had that chatter, and upping the abx has helped them both at those times.
  15. Since I don't have an account with Facebook (and don't really want one...I have enough to do already), I'm not sure what this is. Can you please explain?
  16. Check this website: http://www.stopcallingitautism.com/ It has a list of immune tests to ask your doctor to order. It was posted on the PANDAS/Pitands side. Also, the fact that he has tics (although dx as tourettes) may be indicative of PANDAS. Check out that forum, and see what you think. Was he sick a lot (Strep, Ear Infections, Sinus Infections, etc?) Did the symptoms come on suddenly (not always a requirement...one of my kids did, and the other has probably had the symptoms for years...both are diagnosed?) Check out the website: www.pandasnetwork.org (set up by a parent, with contributions from parents for parents.) In addition to having my own child dx with Asperger's syndrome, I work with a lot of children with Autism. Recently, I have started recommending that they see a Pediatric Immunologist, as I am so convinced it is related. And, for the record, almost every parent I have asked in the past month, who has a child dx with Autism has a family hx of Autoimmune illness (others are being ruled out as having a genetic disorder, such as Fragile X.) Many of the families contributing on the PANDAS/Pitands section who have children dx with PANDAS also have a family hx of Autoimmune Disorders (personally, I suspect that there are more, but the other family members may not, yet have been diagnosed...my husband, for instance, was just dx with RA!) Good luck.
  17. I also quit my job last year when things got their worst...no choice, I was constantly calling in to leave early or take the day off. I now work as an independent contractor (with children) who's parents totally understand if I have to take off time. Also, my husband takes some occasional days off (he actually gets paid for) when I am taking off too much time, and having trouble making up the visits (yes, I have to make everything up...I work in Early Intervention.) Luckily, things have calmed down a lot, (the crisis was last year), and I can finally work at least some. But, honestly, there were times last year that I didn't know how we would pay the bills, because I did quit my job, and my husband's salary, although high, was not enough to pay them. Good luck. It is a very trying time, particularly in the beginning.
  18. Thank you so much for sharing this. It is wonderful to know that you got to the bottom of it. And, hopefully, even though they didn't respond, maybe someone at Children's Hospital will actually have "heard" what you wrote, and possibly catch that next child who comes through. It does make me wonder, though, if Anorexia may be a type of OCD? I have read some information in the past that correlated possible too MUCH seratonin, and Dr. K. has told us that PANDAS/Pitands kids tend to have their seratonin levels drop due to all the stress on their bodies (so there may be a seratonin connection.)
  19. I would ask Dr. Cunningham that question. She knows better than anyone else.
  20. I can't go, but I was just looking through the presenters list. It's in Chicago, and Dr. K. isn't listed (or did I just miss his name?)
  21. I was drawn into the Autism section this morning (I also mostly hang out on the PANDAS site, because both my children have it.) My 17 year old son is also diagnosed with Autism, but many of his symptoms are PANDAS (tested positive.) He also frequently appears bipolar, but again, his tests always come out high, and tx works. We just found out last year, and only because my younger son has classic symptoms of PANDAS (but still took 4 years for dx, and 5 years for tx.) We have used antibiotics (which stopped his very severe symptoms 3 times last year...overnight), and plasmapharesis (which removes the toxins from the blood), and plan to either do that again or IVIG (plus he continues on the antibiotics.) He still has the social skills problems of an "Aspie", and has difficulty with writing certain types of essays, but I do believe that the vast majority, if not all, were probably started with PANDAS and/or Pitands (he had an allergic reaction to the MMR, and had strep repeatedly when he was younger.) I have started talking to many of my friends, and clients who's children have Autism, about having their immune systems checked, as well as testing for PANDAS. Again, it's one more thing that can be ruled out, before just assuming that there's no way to tx it. And, just like Sensory Integration, it works way better if the children are started on tx immediately (my children will probably have problems the rest of their lives, because dx and tx started so late, and they are both post-puberty.
  22. I'm a bit hesitant about soy, only because there can be problems from it (hormonal, and such.) Personally, I really like rice milk (I'm lactose intolerant) when I drink it. There are cheeses made from rice milk, also. Good luck with this. He will get used to it (my kids did, until my older son decided he didn't want to anymore...and of course there's no way to "police" a 15-year old, so I pick my battles.)
  23. We're still here, too. One of my kids got IVIG last June, and then PEX in August (Did PEX after IVIG stopped working, instead of doing more IVIG.) The other got PEX in September. Both did incredibly better, but both starting to have major problems again. One is scheduled for PEX in the next few weeks, and I need to schedule the other for PEX or IVIG. She has been incredible. Even testified (by telephone) for my son's Due Process hearing (spent 1 1/2 hours answering tons of questions.) She was incredible (the school district didn't believe that he was really sick, and that PANDAS exisited...thought I made it up!) Boy, she set them straight! As far as I know she is the ONLY one who does PEX. Does anyone know anyone else who does it?
  24. Have you had a full immuno workup? I would start there. If you need to, try Dr. B., because he knows about treating PANDAS, but maybe get the workup before you go. If the immuno workup turns out positive, this might help some of the problems. Good luck.
  25. Sounds like there probably is sensory integrative disorder. But, before you start buying a lot of things and just try to figure it all out on your own, find a really good Pediatric OT who specializes in Sensory Integrative Disorder (not all do, and ask them what kind of training, how much experience before using them) to do an evaluation. The evaluation should consist of standardized testing (there are multiple assessments that can be used, as long as the OT knows how to interpret them, rather than just reporting on the results), plus a really good observation should be done by the trained OT. More than likely, the OT will find what you have found, BUT, there may be more than one thing contributing to the problem, and it is also possible that one SI problem, such as treating tactile/(touch) could help speech, for instance. So, my recommendation would be to get the assessment, before trying to treat individual parts of the entire disorder. Trudy
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