Christy_D

My son was diagnosed with POTS in June 2009 and just continued to get worse and worse and time went by. He was unable to attend high school, lost friends, etc... I kept looking for more answers, his main symptom being debilitating nausea. Finally, in May 2012 he was diagnosed with MCAS. The doctor believed my son's POTS was a symptom of the MCAS. Finally, in June of this year, 4 years after the POTS diagnosis, he was prescribed a medication that has given him much relief. While he still has daily nausea, it is at a functional level and he isn't spending most of his time in bed.

So in our case, continuing to search for answers paid off. While MCAS will probably be a life long issue, at least we have the full picture.

Christy

If you go to the topic of discussion titled:

Dr Chelimksy is one of the speakers, his name is listed several times. Dr Chelimsky did not think my son's POTS was from deconditioning, my son was a very fit athlete at the time. When Dr Chelimisky was in Cleveland(Case Western University Hospital), they not only diagnosed patients but treated them as well. We also had testing done for my son at the Mayo Clinic in MN and I found the testing that Dr Chelimsky did was much more thorough.

_{I'm not sure if he takes the holistic route. The first medication he prescribed for my son was Doxepin which was very helpful, but he also prescribed supplements such as COQ10 and L Carnitine(sp?). He is extremely thorough and did a lot of testing. Our experience with him and his wife Dr Gisela Chelimsky(pediatric GI dr) was very good...especially loved Dr Gisela...very caring doctor. Since each POTS patient presents differently, I'm sure the treatment plan is varied. I can only say good things about him.}

_Christy

Dr Thomas Chelimsky is in Milwaukee. He is an autonomic neurologist. He was my sons doctor when he practiced in Cleveland.

Clonazepam has been extremely helpful to my son. He started taking it in June and his nausea has significantly improved. He is starting to get his life back. Dr Afrin, his MCAS doctor, prescribed it, so it must also help MCAS patients as well. Ativan, which is in the same drug class, did not help at all, but Dr Afrin said some patients see positive effects from clonazepam when Ativan wasn't helpful. I don't know what makes it help his nausea or MCAS issues, but it has certainly made an extreme difference in his daily life.

Christy

My son's vitamin D level, a couple of years ago, got down to 7. He could barely get out of bed. He takes a supplement daily(2000 IU) and he saw improvement quickly.

My son takes Doxepin, which is a tricylic(sp?) Antidepressant. It has been very helpful. I think we got lucky when his first POTS doctor prescribed it because it also treats MCAS which we discovered 4 years later he also has. It is also prescribed to help people sleep and people with restless leg syndrome, which my son also has. So this med treats many of his issues.

My daughter had a negative TTT but was prescribed fludrocortisone for the dizziness and it has been helpful.

Christy

Andy,

Re MCAS

FYI my son doesnt have skin issues either. I put off testing him because of that and it turned out he has it. His vitamin D levels were at 7 one point, so he was very ddficient in VitAmin d as well.

Hi Andy,

Sorry for all you are going through. Perhaps you should investigate MCAS(mast cell activation syndrome) and also have they checked your B12 levels?

Christy

Sarah,

1. My son had biopsies done in 2010 in Cleveland. They still had the slides in 2012. I had to fill out a form and had Cleveland send them to MUSC. My son's slides did not show too many mast cells. It is just another test to figure out what is going on with the mast cells. Dr Afrin was glad he had access to those slides. So I guess it is a good idea if you can get them tested.

2. The lab tech wasn't offended, but he worked on the same floor as Dr Afrin so I'm sure he was used to patients watching him put the samples in the refrigerator since the doctor is the one who instructed us to do so.

Christy

If they did any biopsies from your endoscopy your doctor can have them stained checking the number of mast cells. I had my sons sent from Cleveland to Dr Afrin in SC. They came back fine but it is another test that can be done.

She was at Case Western University Hospital in Cleveland but has since moved to Milwaukee, Medical College(something like that). She is a pediatric gastroenterologist who has written papers and done studies of POTS and the GI system. Her husband is Dr Thomas Chelimsky who is a neurologist who has done studies with the autonomic nervous system/POTS. They were both great.

^{In 2009, after several doctors telling me they couldn't find anything wrong with my son and telling me it was anxiety, school avoidance,etc, we took him to see Dr Gisela Chelimsky in Cleveland. The first words out of her mouth were, 'You've probably been told this is all in your head and there is nothing wrong with you. We are going to get this figured out.' She immediately gave me her game plan and told me what tests would be run and for what reasons. At the end of the appointment she gave me a big hug. She has been my favorite doctor through out this whole ordeal. While we no longer see her since we found a local doctor, she gave me back my faith in doctors.}

SarahA,

My son see's Dr Afrin, he is an oncologist/hematologist at Hollings Cancer Center in SC. Then we also have a local oncologist/hematologist at Siteman Cancer Center who treats my son through direction from Dr Afrin. We were very fortunate to find a local doctor willing to treat the MCAS to save us from a 14 hour drive to SC. We now only see Dr Afrin twice a year.

Christy

The urine must be kept cold at all times. Even the container should be refrigerated before using it. When we took it to the lab for drop off, we had to keep it on ice. Once at the lab, Dr Afrin told us to make sure it was refrigerated immediately, so we stressed to the lab tech the importance of refrigerating it immediately.

My son was diagnosed by a cardiologist, but has always been treated by neurologists. His pediatrician has been very 'hands off'. He used to see a gastroenterologist who was up on dysautonomia as well. He now also see a hematologist for MCAS as well.

We have a PPO insurance plan.

Finally after 4.5 years of debilitating symptoms my so is becoming more functional. He has POTS and MCAS. He takes:

Doxepin

Klonopin

Propanonol

Vitamin D

Zantac

Zyrtec

I'm 48, but my son was 10 when it started and 14 when he got diagnosed. He is now 18. My daughter has increasing symptoms/severity and she is 21.

Dr Afrin thinks my sons MCAS was caused from an abcessed tooth that made all of his lymph nodes swell. He cant prove it, it is his best guess as to the cause.

Also. Dr Afrin is very willing to instruct doctors on how to do the testing properly. We chose to have my son tested by him personally to make sure we got it done correctly. We are 13 hour drive but found it well worth it. We now have a local hematologist who handles my son through instruction by Dr Afrin. We still see Dr Afrin twice a year.

Here is also a good link:

http://www.mastocytosis.ca/signs.htm

And this link has been posted before, it is a lecture with slides that Dr Afrin gave. Very informative.

http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf

I put off having my son checked for over a year because he didn't have some of the symptoms that I thought were a must. He didn't get rash/hives, or flush. But he would get itchy and had dermographism(sp?). He was diagnosed in April '12 by a hematologist who specializes in MCAS (Dr Afrin in SC). His main symptom is nausea, so I can't tell you if it was the POTS or the MCAS causing it. Most doctors are not that familiar with MCAS, and the testing has to be done in a precise manner. It was the mast cell doctor who prescribed the medication that is finally making a huge dent in my son's nausea, so I'm glad we pursued it.

_{Hi and Welcome to the forum. My son was diagnosed over a little over 4 years ago (took over 2 years to get the correct diagnosis) and my daughter is also having issues(she is my fainter). Since June of this year, with the right combo of medications, my son is feeling much better. His was so bad, he did not attend school his entire high school years. While it did take over 4 years, he is doing much better. He still has daily symptoms, but he is sooo much more functional. I was beginning to think he would never get relief. So keep your spirits up, it may take awhile, but believe that you will get better.}

_Christy

My son is prescribed Tramadol for headaches since regular meds don't help. He used to get horrible migraines that would last for days and like Sarah said above, he would go to the ER(sent by neurologist) and get an IV of Toradol, Benedryl and Reglan. That always stopped it.

Hanice,

My son has MCAS and doesn't have skin issues, nor does he flush. My son takes a beta blocker-propanonol(sp?) and it works for him. Everyone is different. Before I started him on it, I checked with his mast cell dr. and he said to give it a try, some people have issues and some don't.

Christy

Midodrine was not helpful at all for my son either. It didn't hurt and it didn't help. It just gave him annoying side effects(itchy scalp).