Christy_D

My son's doctor is always open to suggestions that I bring him, especially if I bring in articles, etc... See link below. http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/ The doctor arranged for a nurse to come to our house set up the IV and showed me how to switch out the bags. We did a five day trial(1 bag per day), but for my son the improvement wasn't enough to warrant continuing. We tried this before we got his diagnosis of MCAS, so I don't know if that has anything to do with why it wasn't as helpful. I hope this helps.

My 20 year old son has POTS and MCAS. As SunshineGirl pointed out, many men don't seek help. I wish my son would join the forum, but he doesn't like to discuss his illnesses. I have done all the research on his behalf, granted he became ill in middle school. He just pushes through and doesn't like to talk much about it. When I find new studies, etc. he just doesn't care to know. It might be his age, I'm not sure. Christy

I don't know the Geographic's of Wisconsin, but a very excellent doctor is in Milwaukee. Dr Thomas Chelimsky is at Medical College of Wisconsin. If you ever read studies and research papers being done on POTS, his name pops up frequently. His wife is Dr Gisela Chelimsky and is a pediatric gastroenterologist. She also does research on dysautonomia. They were my son's first set of doctors and gave him his official diagnosis. Christy

We have three dogs. A German shepherd/Doberman mix, a rat terrior and a jack Russell. The german shepherd/Doberman mix will not leave my son's side when he is feeling his worst. He keeps my son company. He prefers the indoors, but does enjoy running the backyard from time to time. It is cute to see him laying next to my son taking naps. The rat terrior is a lap dog and also a calm inside dog. The Jack Russell however requires a lot of exercise. Every lab I have come across has been very high energy. My daughter works at a kennel and the labs drive her crazy.

Dizzygirls, I'm sorry to hear your daughter is going through this. Regarding the migraines, has the neurologist recommended sending her to the ER and getting an IV of meds to break the migraine cycle. When my son had migraines that would not go away and migraines meds wouldn't help, his pediatric neurologist would send us to the ER. He would call ahead and order an IV of toredol, relgan, and benedryl. It would knock him out and he would wake up migraine free. I know the reglan can cause issues, but I think it is more so for people who take it often. Just a thought. Also, my daughter was diagnosed with EDS, hypermobility type, and there is no genetic test for that one yet. She also has POTS. My son has been diagnosed with MCAS and POTS (probably has EDS as well). Keep pushing for answers, Christy

We took my son to Dr Thomas and Dr Giesela Chelimsky when they were in Cleveland. They have since relocated to Milwaukee, WI. He is a neurologist and she is a gastroentrologist(pediatric). They were both awesome and quite helpful.

My son always got sick when he was in the car, short and long trips. He is better now, now it is hit and miss whether or not a car ride will make him sick.

I have provided my son's doctor print outs from Dr Santa Maria's website about IV Therapy. See link below. We have not seen him personally. http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/

My son's symptoms started when he was in the fifth grade, but he wasn't diagnosed until the 8th grade. My daughter was diagnosed at 19 with O.I. It can run in families. I had symptoms as a teen, but a very mild case.

My son's neurologist is in charge of his doxepin and propranolol, prescribed for his POTS. His hematologist prescribes his clonazepam for his MCAS. His specialists were always willing to change and try new things when things weren't going well.

My son takes Doxepin, not for depression, but for his POTS and MCAS. It is a tricylic anti-depressant. It has antihistamine in it, so it works well for MCAS as well. Taken at bedtime, it also helps him sleep. Doxepin is the only antidepressant that relieved any symptoms of POTS. He tried Cymbalta, Zoloft, Nortriptyline, and more with no effect. I think it was helpful for him because of his MCAS diagnosis. It is also prescribed for sleep issues and restless leg syndrome. It helped him with many issues. Good luck in finding one to help. Christy

My son had his done in Cleveland and they knew to hook him up to an IV first to get fluids running in him so he was fully hydrated. Second, they told us because of the POTS they would monitor his vitals closely. At one point his heart rate dropped down to the 20's, so they stopped until he rebounded. Other than that, he felt okay afterwards.

My son's main issues were GI related, nausea, etc... Dizziness was there sometimes, but was never his main complaint.

My son took erythromycin(sp?) 3 times a day. It is supposed to agitate the stomach, making things move along,

Yes, my daughter had a skin biopsy to confirm small fiber neuropathy and has also been diagnosed with EDS.

My son tried a very old school migraine medicine, DHE. He first got an IV of it, then had to do daily shots at home. We tried it for a month, and I was kind of glad when it didn't work because he wasn't liking having to do daily shots in the thigh.

My son's doctors, GI and pediatrician, were telling me nothing was wrong. A diagnositician said it was depression. They said it was anxiety or school avoidance , etc... So, knowing they were wrong, I took him to a psychologist anyways. After the third visit, the psychologist told us this was not a mental issue, but a real physical issue. She said she researched the symptoms he was telling her and thought it was some type of orthostatic intolerance and that we should see a cardiologist. She said she had to frequently research her patients symptoms, because many people are written off with mental issues when their doctor can't figure out what is wrong with them.

It sounds very possible that you have EDS. My daughter was diagnosed this year with EDS by a geneticist. She has also been diagnosed with OI and small fiber neuropathy. My son has MCAS and POTS and the geneticist said (without examing him) that it is very likely he has EDS as well. My daughters ribs pop out of place frequently, that is her major pain/complaint. She went through PT and it helped her strengthen muscles and deal with some of the EDS issues.

Like Katie said above check out MCAS, my son itched a lot and found cool showers helped him. He was diagnosed with MCAS in May 2012. He takes Zyrtec and Zantac twice a day, plus he takes Doxepin which also has anti-histamine in it.

This post reminds me of a T-Shirt I bought my son...he has severe constipation...so I bought him a t-shirt with a stick figure on it, and it said " I Pooped today". For him, that is a good day.

In regards to the number of doctors, I was always happy to see our autonomic specialists always had interns with them training them about autonomic issues. Every appointment we had with Dr's Chelimsky (when they were in Cleveland), they had trainees following them. They always asked us if it was okay to let the other doctors listen in, and we always replied with 'Absolutely!' The last couple of visits with our local specialists, he too had interns he was training.

My daughter was recently diagnosed with EDS. The doctor said she had never seen it skip a generation, so I must also have it. I can't remember if I was hypermobile when I was young, not overly so anyways. I have neck and shoulder issues though. My daughter couldn't do some of the tests for the Beighton scale but was able to do other tricks that weren't on the list that the doctor asked her to do. I think some doctors are more strict when using the Beighton scale and some look more at the entire picture and symptoms occurring.

My son tried it for his MCAS, didn't help...didn't hurt.

My son gets frequent nosebleeds and it has been attributed to his MCAS, because his heparin levels are extremely high.

My son tried Nortriptyline as a migraine preventative when he was in the 7th grade. He only took it for 3 days and we had to stop it because he became an emotional mess, couldn't stop crying..which is so out of character for him. He doesn't usually have problems with medications, but this one really messed with his emotions.