Christy_D

Sorry to hear of the rough time the school is giving you! We have been quite lucky to have a school and counselor who have bent over backwards to get my son what he needs, including paying for online classes when the state funded seats were already taken. I hope the meeting goes well tomorrow. My son is a senior this year, and while he was ahead 1.5 credits at the beginning of the year, he may still have to go through the summer to get done since this year has been his worst feeling year yet. I can't wait until he is done with school to take some of the stress off him. College will have to wait until he is more functional. Christy

My son was also told by several doctors, 'anxiety, or he doesn't want to go to school or depression.' Even after being given an "Autonomic Dysfunction" diagnosis they wanted to say his nausea was anxiety or depression. We left those doctors behind until we found those doctors who knew what was going on. My son is very laid back and nothing rattles him, not even being sick for the last several years has made him anxious or depressed. So I knew their label was wrong. Keep looking for the doctor who doesn't dismiss your symptoms. You know yourself better than they do.

I think that POTS has a genetic predisposition to it. Certain things can happen to trigger POTS. Other family members might be also predisposed but without those triggers, they never have a problem. My son has POTS and MCAS, while other family members have had mild POTS symptoms. My daughter is my fainter, but her symptoms aren't on a daily basis like his. So, no I don't think genetic dysautonomia is caused necessarily from MCAS. That is my take on it.

That is my son's neurologist! He also used to work with The Chelimsky's in Cleveland.

You sound a lot like my son. He was diagnosed with POTS in Cleveland, but at the Mayo they said he only had POTS symptoms..not POTS, because a 10 minute TTT didn't catch the POTS. The TTT he had in Cleveland was 40 or 45 minutes tracking minute by minute. The TTT at the Mayo, they only checked his hr/bp every 5 minutes, not very thorough. They also didn't catch his mast cell activation syndrome at the Mayo. His tryptase levels were fine. Dr Afrin in South Carolina did more extensive testing to catch the MCAS diagnosis. We have a local neurologist to handle the POTS and a local hematologist who communicates with Dr Afrin in SC for the MCAS. This was all way over the pediatricians head as well..

What is the advantage of getting this diagnosis? My son has POTS and MCAS. A doctor at the Mayo said his elbows were slightly hypermobile, sprained his ankle easily. But, my daughter who had a TTT didn't show POTS(she is my fainter) but was diagnosed with O.I. She is hypermobile and has a lot of joint pain and muscular pain. She has a lot of the EDS symptoms, as does my sister and her kids and my mother did as well. While my son is housebound, my daughter is my fighter and lives her life as full as she can. I guess what I'm wondering is, what does getting this diagnosis add to your treatment plan for POTS? She has already been given pain medication. Is is just the knowledge of it or changes in life routines she would need to make etc?? I've flip flopped back and forth on this. Thanks, Christy

That definition has changed over time. Functional for my son used to be... able to leave the house, socialize. Now functional means he is able to get out of bed and leave his bedroom to socialize in our living room. Also, if he is able to have his school teacher come is a functional day.

Winters used to be much worse for my son, but now he is housebound 12 months a year. He at least used to get a break during the warmer months.

My son's symptoms have changed since the beginning of all of this, with the exception of the nausea(has been there since day one). He, too, had low blood pressure, low bp at the beginning and now both are on the high side. He no longer gets migraines that would send him to the ER to get rid of, no longer has 'licorice' legs or 'heavy head'. His dizziness is almost non-existant. So I think for some people the symptoms cycle through. If we could only decrease the severity of his nausea he could be a functioning person.

Fludrocortisone is the generic(if I'm not mistaken). Have you checked the cost of that, I thought it was fairly inexpensive when my son was taking it.

My son sees Dr Afrin..he had us wean up slowly. One vial twice a day for a week, then four vials a day the second week. For the second week, it didn't matter if it was 2 vials twice a day or 1 vial 4 times a day, either way. Third week was 6 vials a day and the fourth week was 8 vials a day. And yes, it was very expensive. Unfortunately it didn't help him. I still have a lot of that left, it is quite an expensive waste!

My son has the same issues, we can't tie his symptoms to his bp/hr. He can feel horrible(which is always these days) and his hr/bp are fine. There is no rhyme or reason.

bebe I did the same for my son. I have several worksheets in Excel...Medical history, list of tests and results, list of symptoms every medication he has ever taken, why and why it was stopped. It is just easier to have a doctor look at these at a glance, plus I don't want to leave anything out. Also, Achilles, my son's doctors didn't push the MCAS diagnosis, I did. So do as much research as you can and email doctors with questions, etc.. I emailed Dr Afrin presenting my son's symptoms and asked him questions. He agreed it was worth looking into. I don't let the doctors dictate to us. If I left it all up to the doctors my son would still be labeled with anxiety or depression,etc..

My son's was a very gradual onset, sick a day here and there(missed 20 days of school in 5th and 6th grade). Then, he started being sick for 2 to 3 days at a time(missed 30 days of school in 7th grade). But in between being sick he was perfectly fine. Until midway through his 8th grade year, it became a daily event and severity sky rocketed. We never knew the cause, thinking a large growth spurt and puberty caused it. Those two factors probably still play a role in all of this, but this year he was also diagnosed with MCAS. His MCAS doctor thinks this may have all been triggered from an abcessed tooth he had in grade school, just his theory can't prove it. You may never know the cause but I do know this whole time we were only trying to treat the POTS and the MCAS wasn't being addressed so I think we weren't making any progress on the POTS.

When my son's illness started he had very low blood pressure. For the last year or two it has been high now. I think, perhaps, that when the illness started he was a very athletic 12 year old and now he is a very deconditioned 17 year old. Since he is no longer in shape(far from it) his blood pressure went up with the deconditioning. Other factors from the POTS are probably also playing a role, but that is one reason for him.

Yes, my son was at first told he was trying to ditch school(even in the summer?) or it was anxiety,etc..We did not go back to those doctors. Even with his POTS diagnosis, one doctor said the nausea wasn't related to the POTS that it was depression, so we never went back to him. I didn't want to waste our time or make it more upsetting for my son by seeing those doctors. FYI- Nausea and vomiting were his first two symptoms. He no longer(or rarely) vomits, but the nausea is a constant. While he doesn't have seizures, he has terrible tremors in his hands. Just keep looking for that one doctor that gets the whole picture. Christy

My son see's Dr Afrin, oncologist/hematologist. We also now have a local oncologist/hematologist to work with Dr Afrin so we don't have to travel as much. As for triggers, we have never been able to figure it out. Dr Afrin said some patients will never be able to figure out what causes their issues. It could be our local environment since he does better sometimes when we travel. He did really great at the Mayo in Minnesota. Dr Afrin said some patients have to relocate.

Unfortunately, so far the H1 and H2 combos aren't helping my son yet either and he has been on them since last May. We are just working our way through the long list of medications for MCAS. He is currently on Singulair which we've noticed him being a bit more social, getting out of his bedroom more. While he still feels horrible, I think he feels a step up from terrible. It has only been a couple of weeks on it.

Based on the results from my son's QSART test done in Oct 2009, they did a Thermoregulartory Sweat Test. His QSART showed reduced sweating, the TST showed he didn't sweat at all on his Torso and most of left arm and had reduced sweating in other areas. I think it only adds evidence to the diagnosis and really didn't change the treatment plan.

For my son, he is sick all the time...not virus sick, but symptom sick. He is nauseated 24/7 in varying degrees and he deals with fatigue/exhaustion and sleep issues. Dr Afrin said it could wax and wane, so people aren't necessarily sick all the time. He said some people feel better for periods of time. Like POTS, MCAS varies from person to person.

My son didn't drink a chalky substance. He had to drink several doses of Miralax and take ducalax the day before.

We take my son to Dr Afrin in SC. We are real pleased with him. He is very knowledgable and has great bedside manner.

When they did my son's they turned up his IV to make sure he was really hydrated. It was done in Cleveland so they were well aware of the POTS related issues. They informed us beforehand that his heart rate might drop,etc...The doctor said she stopped at one point when his heart rate dropped into the twenties and restarted when it came back up. So make sure your doctor knows all the issues with the dysautonomia. Other than that, it went off without a hitch.

Jangle, He was on it from June 2009 until September 2011. It was the first medicine he took once he got the correct diagnosis of POTS. It took away his dizziness and it is now only an occasional issue. He takes Thermotabs for salt increase and increased water as well. With the nausea he has, I know he doesn't drink as much as he is supposed to. Christy

My son initially was on .2 mg daily when he was 14. It worked really well and the doctors thought a lower dose on him might have been as effective, so we took him down to .05 and he was getting dizzy. We found the perfect dose for him was .1 mg, but .2 mg didn't hurt him. After being on it for 2.5 years with no dizziness he was taken off it and the dizziness has not been much of an issue since.