Update-Haven't Posted in a While

[CHRISTYDRAKE]

I haven't posted on here in quite a while and thought I would post an update about my son.  He was diagnosed with POTS in October 2009.  He has not been able to attend school for 3.5 years now(with exception of 6 week period when things were better).  He is still so very sick and medications don't help much.  His main symptom is debilitating nausea.  So far no meds have helped with that yet.

I believe we have finally got to the root of his POTS problems.  He was just diagnosed with MCAS(mast cell activation syndrome).  So while we have been trying to treat the POTS, the cause of it has remained unchecked.  His mast cells produce too much prostoglandin D2 (PGD2) and heparin.  His PGD2 is 2.5 too high and his heparin was 8 times too high(the highest his specialist as ever seen).  

The mast cell specialist believes that many patients with POTS may have a mast cell issue.  Like POTS, MCAS is not curable, only treatable and it is a trial and error with medications.  So it could take a while to find the right combination of medications and doses to help.

We are hopeful that we are finally on the right track and maybe he can return to school for at least a portion of his senior year in high school.  That is our goal anyway.

Christy

[LivingInHope]

Glad that's improved!

[CHRISTYDRAKE]

He was iron deficient last September and was taking iron supplement.  His recent blood tests were fine, probably because of the supplementation.

[LivingInHope]

Wow- with the multiple faucet like blood ynoses, has he developed iron deficiency anemia?

[CHRISTYDRAKE]

He doesn't seem to bruise to easy, but he gets bloody noses that run like a faucet.  So at least now we know the cause of those.

Itchy hives is a symtpom of MCAS.  My son gets itchy without the hives.  Hopefully, we can get some of this under control and give him a more functional life.  He rarely leaves the house, except for doctors appointments.  He spends a lot of time sleeping because the nausea is so bad.  Crossing our fingers.

Christy

[LivingInHope]

Thank you for the update!

It must be somewhat gratifying to learn more about what is wrong with your son!  I knew heparin was a medication administered for anti-coagulation but didn't know it was a substance naturally occurring in the body!  Does your son have problems with clotting and easy bruising then?

If it doesn't work out to go to high school for the senior year, know that I believe home school is better!  (Have you seen IndoctriNation documentary?)  I home schooled prior to taking my C.H.S.P.E., graduating that way and going on to nursing school.  I did miss a senior graduation, but got to enjoy my graduation from nursing school shortly before I turned 18!

When I asked to be tested for mast cell activation disorder, an internist told me the treatment for it would just aggravate my P.O.T.S., therefore, she saw no point in ordering the test.  Since I no longer seem to be having the heated red knees and feet symptom now-a-days, I wonder if I didn't have it anyway.  Lately, I've been having intermittant itchy hives with welts at times on my arms and haven't been able to pinpoint to cause.