Christy_D

Finally! a medication is helping my son's nausea. While it is not completely gone, the severity is much less. After having nausea every single day for over four years, Clonazepam is helping. We will be adding one more dose to see if it further decreases the severity. This was prescribed by his MCAS doctor. Several years back, doxepin(at a very high dose) also gave him relief, but was short lived. After 6 weeks the doxepin stopped abruptly, so I'm hoping that doesn't happen again. Keeping my fingers crossed.

My son tries to do water jogging in the warmer months, recommended by a couple of doctors, and just started using a recumbent bike a month ago. His doctors want him starting slowly and working his way up. If he over does it, he will feel worse and unable to exercise which gets him no where. Also, he has MCAS, and exercise can make that worse. His MCAS doctor says my son does need to exercise, but he needs to find out at what point the exercise makes him worse. It is a fine line.

Here is a link to a brochure that lists the symptoms as well. http://mastocytosis.ca/MSC%20Information%20Pamphlet.pdf

My son's doctors are the ones who always intervene and communicate with the insurance company and explain the reason for the medications, or usually the odd dosages. Can your doctor speak with them? Once the doctor calls them, they have been approved for us.

My son has MCAS and H1/H2 antihistamines have not been all that helpful. Dr Afrin has a very long list of medications for him to try and he said some people get no relief at all. Although, doxepin at a very high dose was helpful for about 6 weeks(a couple of years ago). Doxepin has antihistamine in it. My son doesn't flush, but I think that is because of the doxepin which he has been on since Oct 2009 prescribed for his POTS. He takes a higher dose than anyone else I have ever spoke with. He was put on a beta blocker a couple of months ago by his neurologist for his POTS. Before starting it I checked with the MCAS doctor and he had no problem with it. He said many people with MCAS can handle beta blockers. Trial and error as with any medication. HIs blood pressure does rise when he stands, on average it is around 145ish/80 something. I need to actually see what it does now that he has been on the beta blocker. He was prescribed the beta blocker because he experienced near vasovagol(sp?) syncope at his last neuro appt. His heart rate went from the 90's then up to 110 before plummeting to 55 and nearly passing out during a Poor Mans TTT. HIs symptoms were a gradual increase in number of symptoms and severity. They started in the 5th grade for him and became a daily issue in the middle of his 8th grade year. He just graduated high school, so this has been going on for quite some time. His starting symptoms were GI related, nausea, vomiting, constipation. He later developed the dizziness, headaches, etc..

My son was able to get his PE credit by doing water jogging at home. He had to log 60 hours to get the .5 credit. After 60 hours, I turned in the time log to his counselor to get his credti. He was also given PE .5 credit for physical therapy he went through. He doesn't swim, so I'm not sure if he would have those issues. He just did the water jogging which was recommended by his doctor Is water jogging a possibility? .

You may be right about the center you see him at, all of our appointments are on Mondays which are near the airport. As far as the discount at the Holiday Inn, I didn't need anything from MUSC, Holiday Inn Riverview took my word for it and I did have the appointment paperwork with me when I checked in if they needed it. They have never requested it yet and we have made 5 trips so far. When making my reservation I asked for the MUSC rate, they asked the reason, I stated my son has a doctors appointment there and that was all they requested.

His office moved from where we originally saw him at the Hollings Cancer Center. We still stay at the Holiday Inn closer to that office because of the nice view of the harbor and the restaurant in the top of the hotel, the Holiday Inn Riverview. When I make the reservations, I ask for the MUSC rate. There is a Holiday Inn closer to his new office, I'm sure you could inquire with them about MUSC rates. The Holiday Inn Riverview is about 20 to 25 minutes away, but it is closer to the city for site seeing and has a nice view.

Got it, my son went through the PPRC(Pediatric Pain Rehab Clinic) where 80% of the kids had some type of autonomic dysfunction/POTS and only 20% had a pain issue.

When you say the 'POTS CLINIC' are you referring to the PRC(Pain Rehab Clinic that focuses on POTS)? It is separate from the autonomic testing/specialists.

Blue-Magna Cum Laude is a GPA of 3.75 to 4.0.

Thanks everyone. This has been a great achievement for him. A lot of his schoolwork was self taught. Since the eighth grade, he only attended school for 6 weeks his sophomore year. The rest has all been done through homebound teaching and on line classes. His school counselor said she never had a student who didn't attend school for four years graduate on time. This has been his goal the whole time so he took classes through the last two summers to make his goal a reality. I am very proud of him. He also graduated Magna Cum Laude! Christy

My son was able to attend his graduation ceremony this evening. It was so exciting to see him attend, just leaving the house is big, so this was huge! He had a mild headache and his nausea was also mild, so sometimes prayers do get answered! Now, he just has to finish up one lesson, take a final and he will be completely done with high school. I am very happy right now! Christy

The first thing the doctors told my son when we took him to Case Western University Hospital in Cleveland, was this is not all in your head. It is a physical issue, not a mental one. Those doctors (Chelimsky's) also do research on it, so at least there are doctors out there that get it.

Flatout, My son was tested and treated at Case Western University Hospital in Cleveland by Dr Thomas and Dr Gisela Chelimksy(husband/wife team). We thought they were great. They have now moved to Medical College of Wisconsin. Dr Thomas Chelimsky might be worth looking into (his wife is pediatric). Here are some links with info: http://www.mcw.edu/neurology/divisions/adult/specialties.htm http://www.mcw.edu/neurology/faculty/ThomasChelimsky.htm We also took my son to the Mayo in MN, I wasn't impressed, but it was the pediatric dept. Christy

My son did all of his initial testing at Case Western University Hospital in Cleveland. They were excellent and thorough, BUT the doctors who did all of his testing are no longer there so I don't know how that department works now. The doctors have relocated to Milwaukee, WI. I was much more impressed with the testing done at Case Western than I was when we went to the Mayo in MN two years later. Just my two cents.

KCmom is in Kansas City. Maybe PM her and she can recommend who her son sees. I am in St Louis if you can drive about 4 hours my son's doctor is pretty good. He has a youtube video out about POTS.

That is the same thing that happened to my son. The first TTT was done in Cleveland for 45 minutes with continuous monitoring with diagnosis of POTS, then his second TTT done two years later at the Mayo was only 10 minutes with manual monitoring at 0, 1, 5 and 10. They told us my son was getting better that he no longer had POTS, but actually after that he only continued to get worse. The doctor actually said he had POTS, he scratched out the T. I'm not real happy with the 'results' the Mayo gave us. They also proceeded to take him off all medications saying he didn't need them which caused a crash that he has never fully recovered from. Even after reinstating his medications, they don't have the same effectiveness that they had prior to stopping them. FYI- on poor man's TTT that he has done everytime he sees his neurologist, it shows POTS. The Mayo didn't take into consideration that he may have been having a good day, stat wise.

24 Hour Urine N-Methyl-Histamine Test

They also check PGD2 and Heparin, besides 24 hour urine tests. Even if those come back negative, you still might have MCAS because there are still so many things they don't have tests for yet. Dermagraphism(sp?) is another sign. When the doctor scratched my sons back, it left a red welt for approx. 15 minutes. Even if my son's tests came back negative, Dr Afrin was pretty sure he had MCAS based on the symptoms, the dermagraphism and history. His tests came back positive, so we had a definitive answer.

Davecom, Sorry I'm late to the party. I just read through your posts and the nose bleeds caught my attention. My son has frequent nose bleeds and his are caused by MCAS. His mast cells dump to much heparin, the most his mast cell doctor has ever seen in any of his patients. You may want to look more at MCAS. My son has POTS and MCAS. Even if your test results come back negative, you still might have it. Christy

My son took Topamax as a migraine preventative in the 7th grade. His migraines stopped immediately, but his nausea increased at that time and has never gone away. For a while they thought he may still be having silent migraines, but now I don't know what causes his nausea. There were many side effects from the Topamax so he had to stop taking it. He has had every GI test imaginable and they all came back fine, except the first gastric emptying test. The second test showed his stomach emptied fine. By ruling out the GI issues, they believe his nausea is neurological.

My son was given intranasal lidocaine by a pain management doctor for his migraines several years ago. For him, it had a temporary effect. It would cause the migraine to stop hurting for up to half an hour but then it would return immediately. The doctor explained that that happens to some people. I tried it on myself on a normal headache and it worked for that.

When my son experienced migraines in middle school the regular migraine meds didn't help but Tramadol(ultram) did help. He took 100mg. It took his migraine down to a headache. Prior to the tramadol, we took him to the ER usually on day 3 of a migraine and they gave him an IV cocktail of Toredol, Reglan and Benedryl. That always kicked it completely.

I, too, love imitrex while my daughter prefers midrin(sp? ..isometh is the generic). These are both prescription and midrin is really cheap compared to a lot of the other migraine meds. My favorite all time was relpax but insurance won't cover it any more, to expensive.