Connie Posted August 12, 2011 Report Share Posted August 12, 2011 Today my son received a new diagnosis - mast cell activation in addition to POTS with hypermobility. I am certainly hoping we can turn the corner after a long ride. In addition she thinks a lot of his "brain fog" is called by Topamax. His cardiologist prescribed 400 mg a day. She want him off of Topamax totally since he is having so many memory issues. She wants him to see a Neurologist who specializes in migraine treatment to work with us on his migraines and daily headaches. She wants him to see a physical therapist for exercise therapy so they can monitor his vital signs - long haul. Looks like our work is cut out for us finding the different medical staff and my son's work in getting more active. But I am very pleased to start down a different path since the other path was not working. Will try to keep everyone informed. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted August 12, 2011 Report Share Posted August 12, 2011 My son was on Topomax for migraines 3 years ago. It really caused a lot of brain fog. He was on it for 5 months and stopped having migraines immediately, but the side effects were too much so he had to stop taking it as well. He was in middle school and sometimes couldn't even spit out a small sentence. He said words on paper would jumble and he couldn't read them. The nickname for Topomax is Dopamax, and we found that to be so true.As far as physical therapy goes, we are going to the Mayo Clinic in October to a physical therapy program for teens with POTS. It is a 3 week program and hopefully it will help my son get back to school.Christy Quote Link to comment Share on other sites More sharing options...
Connie Posted August 13, 2011 Author Report Share Posted August 13, 2011 Christy,Good luck with getting your son back to school. I hope you have success at the Mayo clinic October. Sometimes it feels like a long haul.Hope Quote Link to comment Share on other sites More sharing options...
kclynn Posted August 13, 2011 Report Share Posted August 13, 2011 Hi Hope,Where did you have him tested? I totally agree with you about changing directions when one isn't working. Will he be able to attend school? My son is going to try. He is pretty up and down but his recovery time has been consistently good the last couple of months (consistent isn't a word you usually hear with pots is it?) I don't expect it will stay that way but trying to live in the moment to enjoy what we have now. He is out at an RC track with his Dad and last week went to ride on a BMX track which he has always wanted to do. Never would I have guessed we would have this level of activity from last winter but it was finding the right Dr. and medications. Keep the faith. He has to work hard on moderating how much he can do. He had physical therapy today and she worked him pretty hard. He came home and put his feet up till it was time to go tonight. When I say he put his feet up, what I mean is he did that but every once in awhile he gets up and moves his body (even had him walk around and dust). We figured out too much of ANY position is a negative for him.Hope this helps, I tend to ramble on... Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted August 14, 2011 Report Share Posted August 14, 2011 Hope, can I ask who gave you this diagnosis? I recently saw a doctor who told me he had seen three patients with MCAD/POTS and EDS/hypermobility in the past two weeks.I really hope you can find some meds that help him - the MCAD meds have helped me quite a bit, but I still really struggle with OI. Quote Link to comment Share on other sites More sharing options...
issie Posted August 15, 2011 Report Share Posted August 15, 2011 Hope, can I ask who gave you this diagnosis? I recently saw a doctor who told me he had seen three patients with MCAD/POTS and EDS/hypermobility in the past two weeks.I really hope you can find some meds that help him - the MCAD meds have helped me quite a bit, but I still really struggle with OI.Were you at Mayo in AZ? I'm one of those with EDS/POTS and probable Mast Cell Activation and I've been there off and on for the last two months. They also have figured out autoimmune issues and genetics are playing a big part in my issues. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted August 15, 2011 Report Share Posted August 15, 2011 No, I was in Toronto. Word seems to be getting around, though! Quote Link to comment Share on other sites More sharing options...
Connie Posted August 16, 2011 Author Report Share Posted August 16, 2011 We are in NC. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.