Christy_D

Angelloz, The doctor in St Louis is Dr Laurence Kinsella at St Clare Hospital in Fenton, MO. We like him a lot and he has even been willing to try my suggestions when I ask him about them (ie-IV Saline,etc). Christy

CarrieJessica, I live in my Missouri as well, St Louis. My son's neurologist is an autonomic specialist who used to work in Cleveland with Dr Chelimsky. If you ever feel you need someone closer to home let me know and I will forward you his name. Best of luck with Dr Thompson, I hope he can help with a good treatment plan. Christy

Lemons, My daughter is hypermobile, but I don't know if she has EDS. She also has low bp/hr. At her last neuro. appt her bp was 90/56 and hr was 56. But she is also very physically fit, so the doctor attibuted the low numbers to being in good shape. Since passing out last week she has been exhausted/fatigued. Christy

My son has POTS/MCAS and my daughter has had symptoms for quite a while as well but not officially diagnosed since she is so functional. After fainting while sitting down last week and now dealing with severe fatigue/exhasution ever since I have made her an appointment with my son's specialist. Her symptoms now seem to be esculating unfortunately. As a teen I had very mild symptoms and my mother did as well. We would have never known what it was until my sons diagnosis, he just happens to be very severe. Christy

Sorry, can't help. My son's nausea is 24/7 and we have found nothing to help. It is the symptom that keeps him homebound. We have tried every over the counter med, wrist bands, and prescriptions. Dr Afrin just gave us another prescription to try, Emend. It is used for chemotherapy patients so we don't know if insurance is going to cover it, supposed to be real expensive. Christy

Sorry, I can't add any help about the seizure/odd behavior. My son talks incoherently when we try to wake him up. He has complete conversations with us, but they aren't anything we are asking him. That is only when he is coming out of sleep when we have to wake him up though. My son was also a select soccer player, played year round, outdoor soccer, indoor soccer, futsal. His main love though was baseball. When he had to quit that is when his life as he knew it changed. He had to quit in the 8th grade and he will be a senior this year(homebound schooling). We will keep your daughter in our prayers! Christy

My son went through the PRC program last October. He made many friends that he still keeps in contact with there. Be aware they are very strict with what they want the kids to accomplish there and also what they expect from the parents. I did not know that the parents would be going through 'parenting' classes for parents with sick children. I listened to what they had to say and decided for myself what we would implement once we got home. (ie-No consequences if my son is not able to do what they expect him to be able to do). Also, they want kids to stop seeing specialists and stick with their primary care doctor. If I had done that, we wouldn't have gotten my son his MCAS diagnosis. I think the program was harder on the parents and what they wanted us to do, than it was on the kids. Most of the kids stayed at the Ronald McDonald house, but we stayed at the Staybridge right across the street from the hospital. My son spent most of his time at the Ron.McDon House though. Even though my son was still unable to attend school after completing the program, it was a positive experience for him. He has a support group that he texts and talks to daily from there. Also, his school gave him a 1/2 credit for the physical therapy he did there. If you need credits it might be something to look into. Good luck, Christy

My son does have small fiber neuropathy but I don't know if my daughter does. She hasn't been tested for anything since her symptoms have been much less severe than my sons. She had been out at the zoo that day and was sitting outside with friends and said she was very warm. Also, she had her wisdom teeth pulled 2 weeks ago, so maybe it triggered symptoms. Unfortunately, she fainted Thursday evening and we had to leave on Saturday to take my son to see Dr Afrin in SC. I was uneasy going out of town and leaving her home, but my mother in law does live really close to us. She can call her or stay with her if she needs to. Thanks for the replies Christy

Has anyone fainted while sitting down? While all of my prior posts have been about my son since his symptoms are so debilitating, this one is about my daughter. She has had POTS symptoms for a couple of years as well, but hers aren't severe. She had only fainted a couple of times prior to us knowing what was going on and has since learned to prevent them by sitting back down or squatting immediately. She fainted a couple of weeks ago and again two nights ago but this time she was sitting down. When she was sitting she said she got tunnel vision and then lost hearing before passing out. She didn't know how to stop it since she was already sitting down, she didn't expect it. Has this happened to anyone else? My son is not a fainter, so I don't know as much about this symptom. Her other symptoms are: pupils will regularly fully dialate, palpatations, weight loss that she is finally being able to put back on after 3 years, joint and muscle pain. She is also hypermobile and suffers from headaches and migraines. I have made her an appointment with my son's neurologist but it isn't until October. She is still able to function and attend college and work part time. She is a real fighter. Any input? Christy

My son's are constant as well. Some days are a little better than others, unable to attend school for 4 years now.

That's great Zofran worked for you. We tried it for my son, in varying doses and even IV and it didn't help his nausea at all. Christy

I know how you feel. My son is 17 and we were excited last week when he went to 7-11! Seriously, the fact that he left the house for 10 minutes made us giddy. Christy

My son's doesn't go up, it goes down. His will drop to 93/94 degrees. Even at the lower temp, he says he feels hot, so that is the odd point for him.

Alot of the symptoms overlap for MCAS and POTS. From what I understand POTS is secondary to MCAS. My son was just diagnosed in April with MCAS. He has the usual POTS symptoms, plus itching when he gets warm. When the doctor scratched my sons back if left red welt lines for several minutes, that was a sign. But the blood/urine tests confirmed the diagnosis. Christy

Pam, That is great she had a positive response from the anti histamine as short lived as it was. Hopefully finding the right combination/brand of medications won't take too long. It is so frustrating when they can take one step forward and then have to go back again. Christy

HyperPOTS8, At one point we pulled all medications and started from scratch. Without the doxepin he did so much worse, so I do think it is helping. When he started taking it some symptoms stopped and did not return (ie-licorice legs, heavy head). Also for a 6 week period right when we upped the dose to 175 mg he was doing awesome, even able to attend school for 4 classes a day. Unfortunately it abruptly stopped working. His original doctors in Cleveland (Dr Chelimsky) was the one to prescribe it and he is a autonomic specialist. The main symptom we are battling is nausea, his dizziness is pretty much under control. Thanks for your input! Christy

My son takes Clariton (10 mg 2x day) and Pepcid (40 mg 2x day). So far not helping. We stopped the aspirin therapy, wasn't helping and he had side effects. We will be seeing Dr Afrin again next Monday, so I'm sure something else will be tried. He said there is a very long list of things to try and could take quite awhile to find the right medication. My son has also taken Doxepin for almost 3 years now, it has antihistamine in it. That is prescribed for POTS and MCAS. It has been helpful, when he stopped taking it to try other meds he got even worse so we know it has some effect on him. It doesn't help on a low dose for him though; he takes 125 mg right now. It was most effective at 175 mg but then it abruptly stopped. Christy

My son has a small cyst on his brain that doctors also dismiss. He also had an MRI myelogram from his head and down his torso where several cysts were found on nerve endings. These were also dismissed as not being anything important, but I often wonder since POTS/MCAS is still having research done to figure them out. Christy

We have taken my son to Cleveland and Mayo in MN and neither could 'for sure' say what caused his POTS. Although, now MCAS is probably the culprit which they believe may have all been triggered by an abssessed tooth, but still that is not definitive.

I hope you guys get some of the answers you are looking for tomorrow! As the mother of a sick child(son), I can definitely sympathize with you. Keep pushing for answers. I also agree that this forum is invaluable. Another member on here nudged me to look into MCAS in my son, and I just didn't think it was an issue. Once I finally took him for evaluation...Viola! He has MCAS. Good luck on finding those answers, Christy

My son took it for quite awhile with no effect. The doctors at the Mayo said to stop taking it since we could not see any benefit from it.

If I'm not mistaken, with MCAS there won't necessarily be too many mast cells which is what they will be looking for in the bone marrow. It is just that the mast cells 'behave' badly. So they still might rule out a mast cell issue if they don't know much about MCAS. Is there any way you could get to see Dr Afrin? He is so knowledgable and thorough.

Yes, my sons MCAS diagnosis was based on PGD2 being 2.5 times too high. He was taking aspirin to suppress the PGD2 but wasn't having any benefit and was having issues, ie worse chest pain. He also said he could feel his blood moving in his veins and felt his heart beating all over his body. So we stopped the aspirin (very high dose) last weekend. Also, his heparin was 8 times too high. Higher than Dr Afrin had ever seen in any patient.

My son's friend he met at the Mayo program did those treatments and were helpful to her. She had many issues though and I'm not sure why she was doing it. She had some autoimmune issues.

The only symptom we have ever been able to control for my son has been dizziness. He took fludrocortisone for it.