Christy_D

Can you locate the doctors email address? By googling and searching on the internet, I could find most of my son's doctors email addresses and that was how I communicated with his doctors. This way, I got straight through to the doctor and no miscommunications took place.

Christy

My son took fludrocortisone for over 2 years and it took his dizziness away. After stopping it, the dizziness did not return. He currently takes Propranolol which decreases his b/p(which is now high) and his tachycardia.

My son's serum tryptase test came back fine, but his heparin levels and PGD2 levels were both high. Like Katybug said, it is hard to catch high tryptase. So, based on symptoms and the high levels of PGD2/heparin, plus the dermographic test done on my son's back, he was given the diagnosis of MCAS.

We have three dogs, german shepherd/doberman mix, jack russell terrior, and a rat terrior(my daughter saved the two terriors when their owner was dieing of cancer). The german shepherd/doberman won't leave my son's side when he feels his worst. The rat terrior lays on his lap when he is gaming or takes naps with him during the day. The jack russell doesn't give a hoot...he only wants to play fetch. They keep him company and give him comfort. I couldn't imagine my son going through this without our dogs.

Christy

My son went through a weekend of DHE through an IV a couple of years ago. He felt a little better with it, although it may have been the IV Saline that perked him up. Since it might have helped, his neurologist then prescribed DHE shots that were daily. After two weeks we decided it wasn't helping him. My son's local neurologist was the one who prescribed it for him thinking he was having silent migraines. It is apparently old school migraine treatment.

What are they prescribing it to your daughter for? Hopefully it is helpful.

Christy

I emailed many doctors (hematologists) with the specifics of my son's issues and diagnosis when I needed someone local to help treat him for his MCAS. I found emailing the doctors directly was best rather than talk to the nurse and have her relay the info and probably get it wrong. One doctor emailed me back saying she would ask her colleagues and help find me the right fit. She did find us a good doctor willing to treat my son based on the recommendations of an out of state doctor more versed in MCAS. It saved a lot of time rather than making an appointment and going through doctor after after doctor.

I first googled the type of doctor I was looking for in my city, and it came up with a long list of hematologists(one hospital in particular that contained their email addresses). Hope this info helps.

Christy

Hi June,

My son originally had low bp when it all started and now he has high bp. Things change up and symptoms cycle around, My daughter has always had low bp.

Glad you had a good visit and hopefully are able to find help at home.

Christy

I received a letter from Dr Afrin today. He is moving from MUSC in Charleston, SC to University of Minnesota in Minneapolis, MN. He will only be in SC until May 2nd and start in MN in July. Just thought I would let those with MCAS or interested in MCAS know.

Christy

My son is treated by a hematologist for his MCAS, but never saw one for his POTS.

My daughter was diagnosed by a geneticist.

Here is a link to a EDS forum. My daughter has EDS hypermobility type and O.I.

http://www.inspire.com/

Christy

June,

I forgot to mention, a side effect of doxepin is weight gain. So it might help your daughter there as well.

Christy

We got very lucky, in that the first specialists we saw for my son for POTS prescribed him doxepin. Doxepin is prescribed for POTS and MCAS and Insomnia. It is also prescribed for restless leg syndrome, which he also has. When we didn't think the doxepin was helping him we took him off of it, everything spiraled out of control, the POTs or MCAS symptoms(hard to tell which is which) and the. sleep issues got worse. So the one medication we know helps is doxepin. We give it to him at bedtime and it definitely helps him sleep. Dr Chelimsky was the first to prescribe it to him and I think they picked it in particular because they knew it would also help with the terrible insomnia he was experiencing. He even went through a sleep study to try to figure it out, but it is just a symptom of POTS.

Christy

My daughter was diagnosed with small fiber neuropathy from a skin biopsy on her thigh and near her ankle.

My son had one done in Cleveland at Case Western University Hospital and it was 45 minutes and tracked minute by minute, and that is where he got his official POTS diagnosis. He had another TTT done 2 years later at the Mayo in MN and it was only 10 minutes and they manually tracked bp/hr at the beginning, and 5 minute and 10 minute mark. They pronounced he no longer had POTS based on that 10 minute TTT(FYI-he still had POTS). So, I much prefer the longer version that tracks minute by minute.

My daughter also had a TTT done her neurologists office which was 45 minutes and tracked minute by minute.

Same for my son, bp/hr and had no correlation to how he was feeling. I had a chart, tracked it daily, but it did not provide any insight. Symptoms could be horrible and vitals just fine, no rhyme or reason.

My son is doing much better, and I'm not sure he even has POTS anymore. His heart rate does not go up 30 beats any more, no more dizziness or lightheadedness. He was diagnosed at age 14, but it took us a couple of years to get that diagnosis. He is currently 19. He was also diagnosed with MCAS and I think the lingering symptoms are attributable to that and will probably be a life long issue. He may also be doing better due to the medications he is taking as well, finally finding the right blend...cocktail of meds..to take care of the symptoms.

Christy

My son takes 150mg twice a day.

June,

Just for clarification, I didn't homeschool Cody. He was on homebound school. The school sent a teacher to our house in the evenings when I was home from work, someone 21 and over had to be present when the teacher was there. Plus, he felt best in the evenings so that worked out better anyway. He received 5 hours per week, and if we cancelled because he was too sick we were able to bank those hours for additional hours in a week he was feeling better. We set up for the teacher to come 3 nights a weeks for 1.5 hours to 2 hours per night. We were very fortunate in that the homebound teacher was extremely flexible and would come whenever he was up to it(including weekends). Going to school was just not an option at that point in the illness. Of course the medication that helped him most and got him functional again was started the month after he graduated.

Christy

Sleep issues have always been a problem for my son. His hours flip/flop and he experiences insomnia. Doxepin has helped with the insomnia somewhat, but his hours still like to flip.

My son was unable to attend school starting midway through 8th grade, of which he missed 1/2 the days before that. He was able to attend 1/2 days for 6 weeks of his sophomore year when medication had a really positive effect on him..then abruptly stopped working. He is one of those that really never looks sick and he has a great poker face when he is really ill. So I have to ask how he is feeling in order to know what he is dealing with.

For a while, I would pester him to go to school, telling him he looked like he could attend an hour or two. He explained that while that might be true, that hour or two would take a tremendous toll on him afterwards. By having to sit up in a hard chair, florescent lights overhead, not being able to control the room temperature and trying to focus on a teacher, books, the hallway walk to another class,etc(all while dealing with some degree of nausea and hoping not to vomit)... would make him spiral down worse than had he been able to stay at home and 'maintain' a level of sickness ....if that makes sense. So I didn't make him expend that energy that he was saving to maintain his level and not feel worse/bedridden the rest of the day. So we ultimately chose the homebound/on line class route for his education. This also caused him to be very isolated and he still is since his friends all moved on. He does have contact with a friend with on line gaming. He is feeling much more functional now; we are going to have to light a fire under his xxxx to get him to start socializing again.

Hope that helps,

Christy

I had the testing done for my son as well. He was originally diagnosed with 'autonomic dysfunction' without any testing done based on symptoms. Without the sweat test we would have never known he didn't sweat anywhere on his torso, which explained why he would cramp up when he was able to play soccer. My thought is...the more you know..the more you know. Plus, actually seeing a specialist in the autonomic dysfunction opened up the door to many other medications used to treat POTS.

We went through a trial and error with medications before finding the ones that work or at least helped him. If she isn't having any or much improvement on the med's she currently takes, maybe it is time to try new ones. Midodrine didn't help my son at all, but florinef did.

Christy

My son takes Zyrtec (10 mg 2x day), and Zantac (150mg 2x day). He tried Quercetin, Gastrocrom, Singulair, and aspirin but got no relief. The final medication that really helped him was clonezapam(5 mg 2x day). He is also taking Doxepin(75 mg) that we have tried to eliminate twice, but found he spiraled down further without it.

I had a cough for a couple of months that wouldn't go away and the doctor couldn't explain. I found out I was vitamin D deficient and the cough cleared up a couple of days after starting a vitamin D supplement.

I hope you finally get some answers and the much needed help your daughter needs. How long of a wait do you have for your appointment? Hopefully not too long,

Christy

Both of my kids much prefer salty foods (chips,etc.) to candy or cake. Candy has always been available to them and they snub it, I never understood it until the POTS diagnosis.