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About Lenna

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    Wayland, Massachusetts

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  1. My adult son is hearing that Florinef is now unavailable, with no predictions about when it will be produced again. Are others hearing the same thing, and how are you dealing with this? I’ve read on this forum that you can’t just abruptly stop taking florinef...it sounds like you need to wean off slowly. He’s been on Florinef for years. He has POTS almost completely under control and lives a normal life, but takes medications. I’m so worried that this situation with florinef will cause him to relapse.
  2. Yes, my son has been told the same thing. He has enough to last him another 2 months, but then will have a huge problem on his hands. What are others doing about this?
  3. I haven't been on this site for a long time, because my son is about 85% recovered from POTS. But I logged on today and saw this post from last January. Losartan (or rather, the brand Cozaar) gave my son his life back. He is someone who is too vasoconstricted, so meds like Midodrine were the worst thing he could take. It took years to figure that out, and cost him his high school years, but I'm happy to say that he is now a Phi Betta Kappa college senior!
  4. There was an article today (part 1) on the front page of the Boston Globe that is a horrifying story of parents who have lost custody of their teenage daughter who has mitochondrial disease. The parents have been too "aggressive" in trying to get her the help she needs, and two hospitals are in a power play about whether the girl's issues are medical or psychiatric. So one of the hospitals filed a "medical child abuse" claim against the parents, took the girl off her meds and put her in a psychiatric ward, where she has languished for months. I read the article and thought "There by the grace
  5. I'm not a frequent visitor to Dinet anymore because my son is so much better these days, but I do occasionally check in, and saw this post today. Losartan has literally given my son his life back. He spent 3 and a half long years suffering daily with dizziness, fatigue, nausea, you name it. He went overnight from being a straight A student to being unable to attend high school. After 3 years of trying meds like Midodrine, Mestinon, beta blockers, Clonidine, etc., none of which helped him, we figured out that he has a nitric oxide deficiency and started him on Losartan (Cozaar). Within months
  6. I thought some of you might find this interesting. This case was written up in Massachusetts Lawyer's Weekly, September 30, 2013, page 6. I'm providing the link but I don't know if that will work, so I've also cut&paste the article. Sorry that it's not in the easiest format to read. What do you suppose the medication was? http://www.pageturnpro.com/Publications/201309/290/17516/pdf/130247014691290955_MLW%20093013_web.pdf Handicapped student sues college over meds, shots $1 million settlement The plaintiff was a 29-year-old female who had completed an outstanding academic career at Oxford
  7. Issie, actually, Danny did NOT do particularly well with Losartan,the generic version of Cozaar. It's only the brand Cozaar, made by Merck, that has been helpful. We don't know why.
  8. My son has low flow POTS, and is vasoconstricted. Doctors start out by assuming that POTS patients are vasodilated, and prescribe Midodrine. This doesn't work for everyone. Midodrine constricted my son's veins even further, and that was not what he needed! These days he takes Cozaar (Losartan) to dilate his veins, and he is doing really well. Not perfect, but he's enjoying life again.
  9. Ask your doctor if you can try domperidone. If you're in the U.S., you'll need to get it though a compounding pharmacy. This is the only thing that has consistently controlled my son's nausea. BTW, you can get it without a prescription from overseas (it's called motilium) but it doesn't work nearly as well for my son as the compounded variety.
  10. Oh yes, I know about the over-the-counter version. I thought you meant it could be compounded in Canada. For some reason, a compounded version worked better in the past for my son than Motiliu. Anyway, thanks!
  11. Can you IM me with the name of a pharmacy in Canada that will send it to my son in the U.S.?
  12. I was told by the Canadian pharmacies that I called that Canadian Federal law requires a prescription from a licensed Canadian doctor. Have your friends gotten it from Canada recently?
  13. Domperidone has been a miracle drug for my son's nausea for the past few years. He was getting it from a compounding pharmacy in Massachusetts until last month. At that time he was told that Massachusetts isn't being allowed to compound domperidone anymore. They referred him to a pharmacy in Maine that filled the prescription and sent it to us. When he tried to get another refill today, the Maine pharmacy said they are no longer allowed to compound domperidone for non-Maine residents, and they are not sure how much longer they'll be allowed to compound it at all. I have a call in to my son's d
  14. My son is believed to have "low flow" POTS, based on the fact that he was shown to be deficient in nitric oxide during a clinical study at Beth Israel Deaconess. That means he is vasoconstricted, and Midodrine is absolutely the wrong medication for him. He is now on Cozaar (Losartan), which is a vasodilator, and Florinef, and his POTS has improved to the point where it is an annoyance but no longer rules his life.
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