kos_mom

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.

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

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.

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.

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 her with having OCD. First she denies--for a second--then admits. Doctor tells her that OCD is genetic and her son has inherited it. Never mind that the son's problems seem to be tics. Mother then breaks down and says she'll agree to the procedure for the presumed perforation. They go out and talk to the father. Mother says she'll go with the procedure, and father protests how badly tics have ruined their son's life and they need to back to the PANDAS doctor for IVIG. Mother then confesses she has OCD and son's problem is inherited and not PANDAS. Husband is shocked; why didn't you tell me you had OCD? (He never suspected in ten plus years of living with her?) Because, she says, I didn't think you'd love me if you knew. Husband barks out to doctors to do the procedure and storms off in disgust at his wife.

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.

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.

I have private messaged you.

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.

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.

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 their study. I heard about exposure response therapy and he did that for two years. He was much better after but not 100 percent. He got strep again at the end of his freshman college year, and again last year. Abx his pediatrician gave him helped. This year he saw his first Pandas specialist, Dr. L and since has had his tonsils and adenoids removes and has just received IVIG. We are hoppeful he will be back at college this semester. Please encourage your friend to take her DS to a Pandas specialist. I am quite sure that his age would not be a barrier to Dr. L, Dr. T, Dr. K, or Dr. B. I don't know about Dr. M in Florida--they may have a strict definition of pediatric. There is also Dr. J at Mass General, who is an adult psychiatrist. He could be helped by abx/steroids, T and A, or IVIG. My son had extreme word OCD (not sure if your friend's DS has the same type--essentially he ticced whenever he heard certain word--close to 100 of them including really common ones like do and to and all their hononyms); this is quite amenable to exposure response prevention therapy. But it is tortuous diving right into it without some prior dampening of the symptoms with other treatments like abx. We had to do it that way in the absence of another approach so it can be done although the emotional price is high. If it is a long wait to see a specialist, she could get a phone consult with Dr. T and get a lab order for all the basic bloodwork and perhaps find a sympathetic doctor who would try a trial of abx if blood tests warrant.

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.

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

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

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.