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lfran last won the day on May 17 2013

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  1. www.genomind.com offers a saliva spit test that will test for your likely response to SSRIS. At least, it did in the past. Also, after battling this for years for my son, trying just about everything that was offered, I can say that the very best response was from a clinical study at UCLA that, of all things, is a 4-week attention retraining program. The hypothesis is that OCD is at least partly based on paying too much attention to your triggers. The UCLA program is/was based on research in San Diego (http://nas.psy.sdsu.edu/index.php) by Dr. Najmi that showed this was an effective protocol for adults, and UCLA wanted to study it in kids. Totally noninvasive -- you make a list of trigger words and then you do a computer task (sort of game-like, but not really) that actually trains your brain to pay less attention to the triggers. I saw a huge decrease in symptoms a couple of weeks after he finished the program. It can be done at home with a computer and the proper setup. (The UCLA program requires weekly visits, but they said they might be changing that). The CUTA people used to offer this program for sale/rent where you could use their technique in your own home. I can't find that reference any more, but if you called them (USA: 619-229-3740) they might be able to tell you more. Wishing you the best.
  2. I have a clotting disorder of pregnancy also, which was diagnosed after I had my pandas son. Took heparin with my pregnancy for younger son and he is not pandas.
  3. Also, you can stay in the local Ronald McDonald house and that is free (or extremely low cost -- I forget which. Like $10 a day or something?) And it is walking distance to Rothman. And the airfare and lodging can count as medical expenses on your taxes, although you have to have a lot of medical expenses until the deduction kicks in -- it used to be 7.5% of AGI but I think they raised it to 10%.
  4. Have you called the Rothman Center to see if they handle eating-disorder OCD? They are really some of the best in the country. Even though they are in St. Petersburg, Florida, and it seems ridiculous to have to travel to Florida to receive good ERP, that's what many of us on this Board have found out from trial and error. Many of us have tried one or more local therapists only to go to Rothman and have them make more progress in a few days than the local people made in months. Rothman runs intensive OCD programs -- they meet with you every day (or sometimes twice a day) for one or more weeks. They take most insurance and they were wonderful for us, after we had tried 4 local therapists who didn't really do anything. I strongly urge that you at least call them and see if they can help. Unfortunately, right now it is spring break time so everyone wants to vacation in Florida and airfares and hotels are high. But prices will go down after the rush, or it may be worth it to go anyway, if they say they can help. I personally would not be enthusiastic about a therapist who knows how serious your child's situation is and who keeps putting you off. And I have personally met with several therapists who were local to us who assured me they knew all about CBT and ERP and they really couldn't hold a candle to the people who really *do* know what they are doing. And it is so sad, because all the literature says this is the gold standard for OCD. Why can't the therapists do it successfully???? So sad. This is a *!*&% disease. We all know it.
  5. We just went a Pfeiffer clinic. The histamine they test for is the "whole blood histamine" and only Labcorp does it -- not Quest. Don't have results back yet. Will post when we do.
  6. Bumping this because I omitted the link in my previous post. http://www.genomind.com/products/assay I'm pretty sure it was covered by insurance.
  7. There is a saliva spit test from a company called Genomind that will very quickly tell you if your genetics make you a good or poor candidate for SSRIs and other neuropscyh medications. Here's the lnk. Turnaround is very quick. At least one of the originators of the test has written textbooks on neuropharmacology. Sorry -- here's the link. http://www.genomind.com/products/assay
  8. What is methadextrone? if it is related to metotrexate, then it has major implications for folic acid metabolism, which as you know has been a problem for a number of the kids on this forum. Take a look. I couldn't find anything by googling, though.
  9. I seem to recall that a lot of people have posted that when their kid's tonsils are removed, the ENTs say something like, "Wow, these are the most cryptic tonsils I've ever seen!" My question: does cryptic always seem to indicate bacteria and infection? I myself have very cryptic tonsils, but I have had them cultured (and have even had the tonsil stones cultured -- I know, TMI -- sorry!) and they don't show strep or other pathogens. Just wondering about this. Thanks.
  10. I was told to always take the thyroid meds in the morning, as they can keep you up if you take them later in the day. Also, take away from calcium and similar supplements (probably Mg/Iron/Zn, is my guess) as that can interfere with absorption. r
  11. Quest and labcorp won't usually draw for igenex but hospital labs will and they will also do quest or labcorp as well. Just call around to see if they will do it and be aware of shipping issues re timing for igenex if you do it yourself. You may need their kit but if you call and get their instructions the local lab may have all the necessary tubes.
  12. DS12 is sick, probably strep. I will be taking him in for a swab, and wanted to ask if anyone knows the CPT code or Quest Test Code for the throat culture where they also test for which antibiotics will be useful. Is it this one? ANTIMICROBIAL SUSCEPTIBILITY, STREP MIC PANEL [51315] Test Code S51120 CPT Code 87186 Thanks!
  13. If it's the coating, you can always wash it off. That's what we were told to do -- because apparently some kids are sensitive to the blue dye. However, I think then it tastes a lot worse!
  14. I second (third) all the advice to line up legal counsel now, just in case. If Beth can't be your attorney, I would definitely put someone else on retainer. Also, what are your options regarding inpatient treatment at a place like Rogers Memorial in Wisconsin, or hopefully someplace closer? And...since his main OCD is that he won't leave the bathroom, what happens when another family member needs to use the bathroom? Do you have other facilities? If so, and they suddenly became inoperable (because you removed the plug or some other interference), would he get himself out of the bathroom so his younger siblings or parents don't have to go to the neighbors? Would that be a way to start to break the grip that particular OCD has on him (with his therapist's agreement to the plan, of course). Or would it be more likely to backfire? So very sorry this is happening. And with your middle child ill with strep, too. Hugs and prayers.
  15. Great idea to see if the lab will hold onto the sample. If you can't find a doctor ASAP to call the lab, I would try calling them yourselves to ask, explaining that one of your other doctors wants to look at the sample, and that their clinic will be contacting them ASAP with a lab order. (They'll probably like that -- it's more money for them anyway!) Probably any doc can help with this -- even a PCP, if they're willing.
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