Christy_D

What about local nursing homes? Maybe visiting with people who don't get visitors?

My son had his done in Cleveland where they know all about POTS. They upped his IV before the procedure and watched his bp/hr throughout. They said at one point his heart rate dropped into the twenties and they stopped until it came back up. Other than that, he had no issues.

I've read an article, can't remember where, that is connecting to much PGD2 to hair loss. Unfortunately my son's PGD2 levels were 2.5 times to high. Thanks Issie, I do love his hair. I can't picture him without it.

I won't mention this to my son, he is 18 and has hair like he should be in an 80's hair band. His hair is long and wavy. He would not be happy to hear this.

My son calls it 'licorice legs'.

He is not one to get side effects. Things either work or they don't for him. The only medication that he can't take because of side effects are Nortriptyline(sp?) and Topomax.

Issie, With GastroCrom he was still severely nauseated 24 hours a day and really never left his room. With the ketotifen, he is leaving his room more often(in the evenings) and being more social. He jokes around a bit more. We can tell by his behavior and interactions with the rest of the family. While the nausea is still there 24/7, he has a block of hours that he is more functional. While he still isn't feeling great enough to go out, it is a step in the right direction. Christy

Unfortunately, with MCAS, even if all the tests are negative it isn't ruled out. There are so many receptors they can't even test for yet. So, even if the tests come back negative doesn't necessarily mean you don't have MCAS. There is still a lot of research that needs to be done in this field. Dr Afrin said it is still 10 years out before they will have tests to know which receptor(is this the right term?) will react to which medication.

Hi Issie, We thought we were seeing a little improvement on the ketotifen, but not so much the last couple of days. I'm hoping maybe just a set back because of the weather change. Any change at all seems to knock him down. He isn't on full dose yet. It will be about two more weeks before he is on full dose, so hopefully this is going to help. We see Dr Afrin again at the end of April. Christy

Good luck, we travel 13 hours to see Dr Afrin. We have found a local doctor to help treat the MCAS through Dr Afrin, but he still wants us to go to SC every 6 months. So twice a year is better than 4 trips we made last year. We chose to travel the 13 hours to make sure the testing was done by someone who knows all about MCAS. The testing has to be done a very specific way, ie cold test tubes. Once we got the testing done, Dr Afrin also preferred us to find a local doctor to work through that he would advise.

Dr Afrin is in Charleston,SC and he is an Oncologist/Hematologist. Here is a link to a powerpoint presentation he gave in Canada, plus a link to a good site. http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf http://www.mastocytosis.ca/peliterature.htm

Dr Afrin diagnosed my son. He took 11 or 12 viles of blood and a 24 hour urine test(kept cold the entire time, including in transport). They checked his tryptase levels, prostoglandin D2, histamine and heperin. Those are the specific ones I remember, probably more since so many viles were taken. My son's heparin levels were the highest Dr Afrin had ever seen (8.5 times to high), which explains why when he gets a bloody nose it runs like a faucet. Dr Afrin also scratched my son's back and red welts remained for 10 to 15 minutes. Based on all the test results, history and symptoms he was diagnosed with MCAS.

Hate to say it, but my son would love to go weekly as well!

I get the records from all of my son's doctors/visits/tests. Frequently they email me a form to authorize it and I email it back along with a copy of my drivers license. Then they mail me the records. So far no one has charged me. I have the MRI's he has had done on CD as well. I keep all of these in a three ring binder, labeled in sections by doctor. Christy

For now, he is supposed to start out really slowly in the exercise department. He is supposed to just do a couple of minutes, 3 to 5, on the recumbent bike every other day. Slowly increase how much he can do, not pushing it to quickly. He is to wear a heart rate monitor. He was prescribed propranonal also. Issie, I will definitely look into what is does to MCAS. This doctor doesn't believe in MCAS. I'm not going to start it right away because he just started ketotifen for the MCAS on Tuesday and I want to watch that first and wean up. He was on a beta blocker when he was in the 7th grade, as a migraine preventative. At the time, his symptoms were not so bad and he did really good on it as a preventative. The only problem he had then was it made him a zombie. He slept all the time.

This was his first and only time to(so far). Since my son is so homebound and deconditioned, the doctor said the symptoms of his autonomic dysfunction are worsening. He is putting him on a beta blocker, and gave us paperwork to read through on Dr Levine's exercise program. We are going to get a recumbent bike so he can try to start exercising again. The doctor is also ordering bloodwork to check for sjorgens(sp?) and will move on from there. The doc wants to rule out an underlying autoimmune disease.

At my son's neurologist appointment this morning, they did the poor man's TTT like they always do. This time the results were not what they usually are; his heart rate usually goes up 30 or more beats and his bp rises somewhat as well. Today, his results were: Lying down: 130/79 hr 97 Standing up 1 minute: 135/89 hrt 110 the next minute or two not much change Then minute 5 he looked distressed, almost vomited and passed out and his vitals were: 75/42 heart rate 50 His vitals have never plummeted like that, especially so drastically. The nurse had him lay down immediately. The doctor diagnosed vasovagal syncope. It's always something new. Anyone else have their heart rate plummet instead of increase?

dynakids.org has a good list of printouts/resources.

It runs like clock work there. My son was in the pediatric division, so can't compare with the adult side. I wasn't impressed with the TTT they did there. It was only 10 minutes and manually monitored his BP and HR. When he had a TTT done in Cleveland, it was 45 minutes and he was hooked to machines that monitored his BP and HR and put it all on a print out. His testing was done early one afternoon so we headed up to the Mall of America. It was about an hour and a half drive from there. Good Luck, Christy

My son frequently walks into the wall(drifts toward it) or cuts corners to sharpe and walks into the corner of the wall. When he was younger, he used to get sick and throw up every time he got in the car. Thank goodness that is no longer an issue. He does have to pay close attention to the road though.

GI issues are common with dysautonomia. My son had gastropareisis, but his last test came back fine. Whether it is still fine I wouldn't know. He is very severely constipated and doctors never seem to care much, they just ask what we do for it. He will go 2 weeks without a bm when he doesn't take either a stool softener or laxative. Even laxatives take longer than they should. Some he just won't take because of the cramping. His softner/lax. of choice these days is Perdiem. He didn't like Miralax, plus it works by pulling liquid from the body and I figured that might dehydrate a little.

Wow, that is great. Gastrocrom didn't help my son at all. Doxepin helped tremendously 2 years ago, then upruptly stopped after 6 weeks. Our next med to try is ketitofen, waiting to hear from the compounding pharmacy.

When I went to the website, there was also another video on POTS. It showed more how debilitating this womans life had become.

When I first contacted Dr Afrin about my son, he said we could either make an appointment to see him or he would guide our local doctor through the tests. So, perhaps your doctor could get in contact with Dr Afrin. For example, the 24 hour urine sample had to be kept cold the entire time. We even had to transport it to the lab on ice. Christy

My son tried it. It did not help, nor did it hurt. Like Issie said, you should probably start at a low dose and wean up slowly.