Christy_D

Yeah! Hope all goes well.

My son does the opposite. His temperature drops to 93 to 95 degrees and he insists he is burning up. He is very cold to touch as well. So my guess is, the opposite can occur.

Christy

I didn't think mast cell was going to be an issue with my son either, but a member on here encouraged me to check into it. I put it off for over a year, and sure enough he does have MCAS. You do need to see a mast cell specialist, it is even less known by doctors than POTS. Dr Afrin told us POTS is a symptom from MCAS. We haven't found the right medication to help my son yet, but there is a very long list of medications to try.

Doxepin is a medication that is prescribed for POTS and MCAS. When my son was first diagnosed with POTS he was put on Doxepin. At a very high dose(175mg), he saw great improvement but it was short lived(6weeks).

He is still on Doxepin because when we took him off of it, he felt even worse.

Christy

When my son saw Dr Afrin (mast cell specialist) the first thing he did was scratch my son's back. Dermatograhia is a sign of mast cell. The scratches on his back stayed there for quite a while. You might want to check into mast cell activation syndrome.

My son has had 2 TTT and both were done by neurologists, but both were specialists for autonomic issues.

Do you have an IEP? My son's IEP allows him 'Extended Year Services', meaning his homebound teacher continues coming in the summer until he finishes his classes. Soemthing else you might want to check into.

Your counselor is mistaken. My son has been on Homebound for 4 years now. He does not attend school. He does take some on line classes mixed with homebound. He took some on line classes over the summer to make up missing credits. As far as I know, there isn't a minimum number of classes you have to take. His school also gave him PE credit for physical therapy he did and for water jogging at home. Check to see if your school has an alternative way for you to complete PE. We just had to log his time and when he reached 60 hours he got .5 credits of PE. Then the Mayo sent a letter that he completed 60 hours of physical therapy.

My son took Spanish on line, as well as art, music appreciation and speech and debate. Look to see what on line classes you can take for your electives.

That was actually discussed by my son's neurologist, thinking a possible spinal fluid leak would be the cause of the symptoms. They did a MRI myelogram instead and didn't see anything unusual, thank goodness. I wasn't really wanting him to have to endure the spinal tap.

To get around the scheduling people I search the internet for the doctors email address and go straight to the doctor. I explain what is going on and if they can help. They have emailed me back saying yes and schedule the appointment with their scheduler.

The one scheduler kept telling me 'The doctor doesn't see patients under 18' , so I had to explain to her I had an email from the doctor stating he would see my son (who was 15 at the time). Email is my 'Go to' plan to get around the office staff.

Christy

I am in St Louis(Is Missouri in the five state area)? I don't think our specialist see's 12 year olds but you could ask, if it isn't too far. He used to work in Cleveland with the Dr's Chelimsky who are autonomic specialists. I got my son in to see our doctor by emailing him and bypassing his scheduling department. If you are interested, PM me and I can forward you his email address. He took my son at age 15, I'm not sure what his cut off age is.

Christy

I stumbled on the one here is St Louis by someone else's post on this forum. Perhaps start a post asking other members if they know of anyone and did you check the list of doctors on this site?

Get a second opinion by someone who knows about POTS/Dysautonomia. My son was also diagnosed by a cardiologist just by symptoms, sent us away with florinef and said that would fix it. Needless to say, that didn't fix it. That was in June 2009 and my son still has not returned to school. We followed up with specialists who know about POTS. His doctors filled out forms for me for my son to be on homebound school and on line classes. Granted my son is a severe case, so hopefully your daughter can get back to school soon. If not, you will need a 504 plan or IEP.

Visit Dynakids.org, there is a lot of info you can print out and give to the school. FYI, my son's POTS started with GI symptoms and nausea and is currently in bed sleeping for 16 plus hours a day.

Christy

Zap,

We saw both Chelimsky's (Dr Thomas and Dr Gisela) 5 times in Cleveland. They did my son's TTT, Thermoregulartory sweat test, MRI, and because of GI issues an endoscopy, colonoscopy, capsule endoscopy, antroduodenal(sp) test, gastric emtpying test and I know I'm missing some. They were very thorough. She (Dr Gisela) is the most caring doctor we have seen to date.

Our local neurologist used to work in Cleveland with them and has called them for advise on treating my son. Dr Chelimsky was highly regarded by our local doctor.

Christy

Wow,I just read a very interesting article on it after seeing your post. Where did you come across this? It includes POTS and mast cell issues in it.

http://autismapocalypse.com/

Didn't Dr Chelimksy move to Milwaukee? We saw him in Cleveland and he is great.

My son's worst symptoms are GI related, abdominal pain, nausea. He has MCAS and POTS. For a while he also had gastropareisis but the last time he had a gastric emptying test it was fine. So, yes it could be a mast cell issue or it could be the autonomic dysfunction in the GI area.

My son used to have severe migraines that always ended in the ER with a cocktail of IV meds. He used Topomax for 5 months and the entire time he didn't have a migraine, but the side effects were horrible. Sometimes he couldn't speak a coherent sentence, trouble thinking of the smallest words, major cognitive impairment all this while in the 7th grade and trying to go to school.

The long lasting painful migraines never returned, but he was then diagnosed with silent migraines, possibly the cause of his nausea. I would never put him back on the topomax, too many bad side effects.

My son was prescribed Ativan for his nausea....it didn't help. I also didn't like the amnesia effect it gave him.

My son did, but it didn't help. But give it a try since everyone seems to react differently to meds. And the cause of nausea can come from so many different sources, whether it is GI related or neurological.

Thanks for the replies. We are tapering up very slowly, 100 mg every 7 days until he is on 800 mg(200 mg 4x day).

We haven't figured what his triggers are, he is just in a perpetual state of sickness. When this ordeal started we did the food diary, eliminations, introducing of foods,etc..Dr Afrin said some people never can figure out what their triggers are. His mast cells dump too much heparin and PGD2. His histamine was on the high end, but they test was also done while he was taking doxepin(which has anti histamine).

My son is starting Gastrocrom tomorrow for his MCAS. Has anyone else tried it? Did you experience any side effects...negatives or positives?

So far nothing for the MCAS has helped. We first tried the aspirin therapy, then additional dose of doxepin, then quercetin. Now we are moving on to the Gastrocrom. Dr Afrin said there was a very long list of medications to try and this could take a long time to find the right one.

When my daughter was in high school she was allowed to wear sunglasses in class if she felt a migraine was coming on because the flourescent lights could trigger an make them worse. Those lights have a flickering that you can't see by the naked eye until they are starting to burn out. I find them quite annoying as well.

My son didn't see improvement until the third day of IV Saline. So one day might not be enough.

My son never had a potassium problem either. But do have it checked after taking the florineff.

My son's tryptase was normal, but he was diagnosed by Dr Afrin with MCAS. It is not a good test to rule out MCAS. I think Dr Afrin is the man to see. He is so knowledgeable. You could email him directly with questions and he will email you back answering them.(ie-regarding testing,etc.)