kos_mom
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Posts posted by kos_mom
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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.
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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.
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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.
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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.
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I have private messaged you.
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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.
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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.
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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.
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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.
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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
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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
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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.
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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.
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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.
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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 often accompanies Pandas.
Ko's Mom
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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
(These include: Kissing Doorknobs, Multiple Choice, and Not as Crazy as I Seem)
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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 and get their child to a good percentage of baseline and then use ERP to mop up the excess.
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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:
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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.
Have his tests been re-run to ensure his infections have cleared? You may need to consider having him on prophylactic antibiotics to help prevent future infections.
I hope he has been on probiotics--you do not want to add a yeast infection to everything else.
Sleep does miraculous things. Unfortunately, insomnia plagues many of our children. Many here use melatonin or benadryl.
Ko's Mom
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dcmom,
Does your pediatrician prescribe the contingency Zpacks in advance so you can spring into action quickly?
Ko's Mom
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EBV and Cox Sackie. Anti-DNase B.
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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 processing deficits. When we did it, if the child didn't meet certain levels of improvement in the first few days, they would advise stopping and refunded your money.
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Kath--My sentiments exactly!
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There are computer programs that work at improving short term memory and processing speed. An old one for memory is Brain Builders. You might google to see what is available.
Tonight's Chicago Med episode
in PANS / PANDAS (Lyme included)
Posted
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.