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Everything posted by kos_mom

  1. kos_mom

    Touretic OCD

    He did very well all through high school. However, college has been mixed. He had two strep infections, each leaving him with varying degrees of difficulty.
  2. kos_mom

    Touretic OCD

    This term was coined by Dr. Charles Mansueto, a psychologist who runs a center for treating OCD in Silver Spring Maryland. Here is a link to his first published article on it (this is the pre-publication version). My son is one of the case studies presented. http://www.behaviortherapycenter.com/tourettic-ocd
  3. I contacted PANDAS Network right after the episode. This morning I received this response from Diana Pohlman: "We heard from lots of parents and 600 innundated the producers email. We are following up with an email to the producers as well. Happily 20-20 is doing a great story on REAL TREATMENT mid May and that will be on ABC." NBC is the producer for Chicago Med.
  4. It aired last night as new episode. I caught it live--don't know how to locate otherwise but perhaps someone more TV tech savvy does.
  5. I did miss the beginning. Relying on my daughter's account and later references it appears that the boy's particular manifestation is a lot of tics. The parents talk about the PANDAS doctor telling them that they shouldn't take any of the recommended steps to prevent perforation, a life threatening event, and instead should do IVIG. Very strange to think that even the most committed PANDAS doctor would recommend risking death. One of the ER doctors notices the mother fiddling with her hands. She follows her into the ladies room and catches her over washing her hands. She confronts h
  6. My daughter alerted me to this. I missed the very beginning, but a boy is admitted to the ER with high fever and stomach pains. Parents say he has PANDAS and is taking antibiotics. Cut to the doctors speaking between themselves that PANDAS is quackery and not validated and that the antibiotics have brrought boy to the brink of a perforated intestine. From there it gets worse from the perspective of a PANDAS parent.
  7. My DS in his twenties has PANDAS but it was diagnosed when he was a child. Adult practitioners of any kind rarely are acquainted with this. To get titers it is often possible to a script for them at a CVS if you get a sympathetic NP. There are also on line labs that you can a script from but insurance doesn't pay. Another option is to go to an online doctor--Doctor on Demand or similar--and have them fax a script. I think it's a cheaper option than paying for the test yourself.
  8. DD has spasticity in her legs and takes baclofen, a drug most often used in MS patients. It allows her to walk almost normally, but she still has pain, mostly in her knees. We're still searching for solutions to this.
  9. Being stuck in the bathroom really is all too familiar. I hope that you were able to get some help. I agree with Nancy's suggestion. Minute Clinics are likely to be a far better choice than the ER.
  10. My DS had his first Pandas outbreak when he was 6--repetitive erasing of his writing. When he was 7 he broke out all at once in a huge nmber of tics and OCd behaviors all at once. I thought he had a brain tumor. He is now 22. When he was younger he recived only prozac. We thought it was working, and put up with some of the undesirable side effects, but it was really just the Pandas tapering down. When he was 9 and a half he had another huge exacerbation. They upped the prozac and everything became worse. After a year and some months he was dx'ed at the NIH but was deemed too chronic for
  11. We used to give it in the morning with the other meds, but on the threads I posted, as I recall, some people give it at night right before bed away from all meds. My kids are older and chasing them down for meds three times a day was hard enough without adding a fourth dose for pepcid before bedtime. I am not sure that it really matters.
  12. Landamom, A couple of threads on Pepcid. http://www.latitudes.org/forums/index.php?showtopic=17525 http://www.latitudes.org/forums/index.php?showtopic=17088 http://www.latitudes.org/forums/index.php?showtopic=15445 Xanax is not an SSRI but a benozodiazepine. This class of drug can be very addictive, but can be helpful if used on an as needed basis for extreme anxiety attacks. Ativan is a similar drug; some have reported very adverse reactions to Ativan (on an as needed basis) in Pandas children. Ko's Mom
  13. Some have found SSRIs helpful, but we tried them with both our DC and they didn't help. DS got new symptoms from them that took a long time to go away. Some have found that Pepcid and/or Benadryl (nightime) help. I would try those first. If SSRIs are going to work it takes quite a bit of time. Also, if you go that route, be sure to start with a very low dose and increase it very slowly. Ko's Mom
  14. An extremely small percentage of those who get IVIG may get aseptic (nonbacterial) meningitis. I monitor this board and other places a lot and absolutely the only Pandas child I know who has had this happen is my own. What I learned from this experience is that although it sounds very scary, medically aseptic meningitis is not considered a big deal as it is self-resolving.
  15. Nancy has given great answers. Re; antibiotics and weight gain. I recall Dr. T saying on one of his radio programs that there hasn't been a lot of research on the effects of long-term antibiotics and he ventured that perhaps weight gain could be one of them. I don't think, however, this would apply to a couple of months of abx use--I think he was thinking more in terms of years. Another natural remedy some use is olive leaf extract. it is said to have anti-bacterial and anti-viral properties.
  16. EBV is often asymptomatic, although people tend to feel very tired. He has a lot going on--cox sackie, strep, myco p--and that could make him more susceptible to catching other infections.
  17. Nancy, Fascinating article. This is the first time I have heard of a connection between strep and narcolepsy. DD was dx'ed with epilepsy when she was 14 (positive EEG), five years before dx with Pandas. She has been off medication for some time (basically she refused to take it any more--very unpleasant drugs) but occasionally has a seizure type episode. Since Pandas dx I've been wondering if seizures are connected to Pandas. T. Anna, With regard to difficulty waking up, are you sure he is sleeping well through the night. We are still trying to conquer the insomnia that so oft
  18. I don't know of any books personally, but my DD 19 spends an inordinate amount of time watching Monk DVDs. Amazon shows this: http://www.amazon.com/The-Ray-Hope-Teenagers-Compulsive/dp/0578070324/ref=pd_sim_b_5 Warning: This child's OCD had sexual overtones so you need to weigh that in you DS's case. There is also "Talking Back to OCD," which is billed as a handbook for children and teens. "Saving Sammy" by Beth Malone is not intended for teens, but I think it would be perfectly suitable fare. Some other choices are reviewed here: http://www.freewebs.com/annekeller/ocd.htm
  19. My DS recovered to about 90 percent of baseline on ERP alone. This was in the old days when almost nothing else was available. The bad news was that initially it was brutal and I was co-opted into the torture through homework. This was not good for the mother-son relationship! It also took two years of twice a week therapy with a 45 minute drive each way. The good news was that in the absence of any other treatment it saved our lives. Luckily, so much more is available now. Most will never need to do what we did. Rather, they can first treat with abx etc. to reduce the symptom level a
  20. I hadn't heard about this, but an internet search yields references to liver toxicity; most of the references appear to come from sites affiliated with law firms, but it does appear that there is supposed to be a label warning about this. Here's an example: http://www.drug-injury.com/druginjurycom/2011/03/zithromax-liver-failure-hepatic-necrosis-hepatitis-label-change-2011-february.html
  21. T. Anna, Welcome to the forum. It looks like the medication is finally working. A couple of questions--how long was your DS on antibiotics? Many do report rapid results with antibiotics, but often those are children having their first outbreak. From the sound of things, your DS has had this for a number of years and it usually takes longer to get results. My DD is 19--some of her symptoms resolved after a month on antibiotics, but others lingered on and did not resolve until after IVIG. She has some symptoms coming back--not as bad as before and may need to go back on antibiotics.
  22. dcmom, Does your pediatrician prescribe the contingency Zpacks in advance so you can spring into action quickly? Ko's Mom
  23. Did you find Hearbuilders? http://www.hearbuilder.com/ I have heard good things about their products. My DS had auditory processing problems long ago and only Brainbuilders and Earobics were available for home use. I believe Hearbuilders is more advanced in terms of graphics, etc. and the other two have remained rather basic. We ended up doing Fast Forward, which requires a provider. The progress he made with a month or so of that would have taken him two years to achieve in language therapy. I am a huge fan of Fast Forward, but it works only with certain sorts of auditory proce
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