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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 of God go I." These are both highly respected hospitals that have treated my son for POTS, and in fact one of the doctors involved (one of the good guys) is still his gastro. I can tell you that there were times when I was very aggressive in getting my son the treatment I felt he needed, and I'm sure every parent of a sick child can relate to that. The article also mentions that the girl acted sicker when her mother was around. What kid doesn't behave that way?? This story is heartbreaking and confusing. I'm grateful that my son is now legally an adult so this is not something I need to worry about as I continue to aggressively advocate for him. I wonder if any of you agree that it would be less likely for doctors to be so quick to put a teenage boy in a psychiatric ward as they did with a teenage girl. You can't log into the article without a subscription to the Globe, so I copied it onto a Word file and put it on Dropbox. You can read it by clicking on this link. It's a very long article, with part 2 coming on Monday. https://dl.dropboxusercontent.com/u/24675071/A%20medical%20collision%20with%20a%20child%20in%20the%20middle.docx
  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, he was able to take SATs, pass a GED exam, get a part-time job, apply for colleges, and now he is a straight A student in his sophomore year (living in a dorm) at a prestigious university. He still has POTS, but Losartan makes it possible for him to function. He has now been on Losartan for more than 2 and half years. Losartan is not a good drug for everyone, but it is a good drug for SOME. No two people have the exact cases of POTS and what works for one person may not work for another. Blanket statements that a drug is bad are not helpful.
  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 University in England, obtaining her master’s degree in Celtic language and literature. In 2010, she was awarded a scholarship at a prestigious Massachusetts university based on outstanding academic performance, strength of character and potential for leadership in the field. The plaintiff had informed the local university of her various medical conditions that qualified her as a handicapped student. Specifically, she suffered from Postural Orthostatic Tachycardia Syndrome, or POTS, a malfunction of the autonomic nervous system that causes rapid heart weakness, fatigue and a severe drop in blood pressure. Sudden fainting spells, migraines and fibromyalgia, among other afflictions, are also associated with the disorder. The school advised her that student health care coverage would pay for her medication and for administration of the medication, which costs $2,000 per injection. Later, the university reversed its decision. After several communications, the plaintiff was forced to obtain the medication on her own in England; however, she continued to ask for assistance with the administration of the medication. In response, the university and its physicians, who were employees of the Student Health Care Clinic, advised the plaintiff that they were not able to help her with the administration of the medication but offered to train one of her friends, who was not a health care provider. The plaintiff subsequently used Skype to consult with her cardiologist in Great Britain in an attempt to administer the medication herself. She failed and, within days, collapsed in an MBTA subway station. She was taken to a Boston hospital, where she was admitted and remained hospitalized for five weeks. Unable to return to her academic studies, the plaintiff was transported by medical flight to Great Britain, where she was re-hospitalized for another two weeks. Thereafter, she remained under the care of multiple medical providers, including mental health workers who were able to stabilize her condition. Plaintiff’s counsel discovered that there was a provision in the student health care plan that specifically covered the plaintiff’s medication and its administration. That contradicted a statement made by the university’s medical services chief, who at one point visited the plaintiff in the hospital and advised her that the university and insurance provider had “changed their policies” and would be able to provide payment and administration of the medication in the future. As a consequence of the university’s conduct, the plaintiff suffered a significant setback in her condition, as well as her academic and professional achievement. She lost the opportunity to complete her fellowship. However, once her condition was stabilized, she was able to complete her education at Oxford. The plaintiff filed suit against the university and several of its individual representatives, alleging discrimination, retaliation, violation of Title III of the Americans with Disabilities Act, violation of Section 504 of the Rehabilitation Act of 1973, breach of contract, retaliation, and breach of covenant of good faith and fair dealing. The defendants presented evidence of reasonable efforts to meet the plaintiff’s requests for reasonable accommodations, questioned whether the provision of medication fell within the realm of a reasonable accommodation, and presented causation issues related to numerous prior flare-ups of the plaintiff’s medical condition in Great Britain. Action: Civil rights Injuries alleged: Discrimination, resulting in setback of medical condition Case name: Withheld Court/case no.:Withheld Jury and/or judge: N/A (settled) Amount: $1 million Date: June 12, 2013 Attorney: David P. Angueira of Swartz& Swartz, Boston (for the plaintiff)
  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 doctor and am waiting to hear back. Trying not to panic... Is anyone else having trouble getting domperidone? Can you IM me with the name of your pharmacy if you're getting it somewhere?
  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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