npbarr2 Posted February 13, 2014 Report Share Posted February 13, 2014 My son was diagnosed with POTS and Mast Cell Disease last month. We were told to do the cardo and strength training, increased fluids and salt, low carbs and sugar, and started him on Midodrine. I haven't found many stories or information on boys with the disorder. I'm wanting to see if there are any differences. He is having such a hard time, even with all the changes above. Having, Tourette Syndrome, Asthma, Aspbergers, Acid Reflux, etc., etc., etc., too, is really bringing him to breaking point. Also, one thing that is really bad on him is a rash that covers his face, chest, and arms. Does anyone else deal with something similar to this? They have been trying several creams at the dermatologist, but none have helped yet. Thank you for your responses, and I am happy I have found you guys! Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 13, 2014 Report Share Posted February 13, 2014 Yes! I have a son that was diagnosised with POTS in October 2011. He was 11 years old at the time. He will be 14 this coming April. My son has not responded very well to the POTS medications. My son has low blood pressue and is on 40mg of midodrine to keep it up. This last year our cardiologist started looking for other underlying causes. He was seen by an immunologist last October and we discovered while he had a high white blood count that his T helper cells were low. We have found an immune connection. My son's symptoms have progressively gotten worse. He is wheelchair bound due to an extreme tremoring condition. My son was seen by a pedatric immunologist in Texas this last Decemember 2013. I recently made a post on some of the testing that has been done it's called neurotransmitter testing. I will bump the post up for you. My son does have a rash that comes and goes on his face and arms. I visited with the doctor about this and he thinks it may be MCAD. He is going to do some more testing. He has not recommended any creams for my son yet. His rash does not itch but the arm rash is warm to touch. When the rash occurs on his arms, he get very hot and uncomfortable.I have a blog called survivingpots.com. His story is written in diary form on this blog. It is heart breaking but it may be of some help to you. I would not wish our nightmare on anyone. Please feel free to private message me if you like. Due to my son's medical condition, I do online schooling with him.Rachel Quote Link to comment Share on other sites More sharing options...
corina Posted February 13, 2014 Report Share Posted February 13, 2014 Welcome to the forum! I'm glad that you've found someone in the same boat as you're in. Of course I don't wish this on any one else but I know that recognition can be quite comforting! Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 15, 2014 Report Share Posted February 15, 2014 My son was diagnosed with POTS when he was 14 and MCAS when he was 17. After five years of being extremely ill and nauseated, homebound the entire time, we found medication to help him last June. He is much more functional but is hesitant to start living his life again. What have they started your son on to try to treat the MCAS? I think, had we had we known he had MCAS from the start, it wouldn't have taken so long to get him feeling better. So, it is a good thing you know right up front that he has both issues.Christy Quote Link to comment Share on other sites More sharing options...
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