Christy_D

For gastroparesis my son took erythromycin(sp?). Have you tried that? The liquid form is supposed to work better than pill form. It irritates the stomach making the muscles contract to push the food out, is what the doctor explained to me.

My son's issues began in grade school and started out as GI problems, stomach ache, abdominal pain, vomiting...The older he got the more frequent the issues became until it became daily in middle school.

The problem with the side effects of Reglan is that they can become permanent. There were class action suits and commercials from lawyers asking people if they took Reglan and listed a long list of side effects. My son was on it for a short while but I pulled him off once I researched it more.

I would bring some type of brochure with info about dysautonomia with you. Your issues sound like my son's issues. Unfortunately, no GI doctor has been able to help. Maybe ask for a gastric emptying test to make sure your stomach is emptying properly.

We are currently in South Carolina, we saw Dr Afrin yesterday. He gave us a prescription for this, 2nd in line to start when we get home. My son has never been prescribed this by his POTS doctor, this is being prescribed by the MCAS doctor. It is being prescribed for his nausea. My son has a tendency to have high bp/hr but can dip low upon occasion.

My son was dismissed by doctor after doctor, told he didn't want to go to school, anxiety,etc...Finally a psychologist researched the symptoms and put us on the right track, thinking it was some form of OI. That was 3 years before we got the correct diagnosis and that was 4 years ago. It took until this year to get the additional diagnosis of MCAS.

Robert, I have found all of my son's specialists via email. Sometimes it takes some digging(ie articles on line) to find an email address. I would research their bio's through what hospital they were affiliated with. When I was looking for a local doctor to help treat MCAS through Dr Afrin in South Carolina I emailed a lot of doctors, finally one of them emailed me back and said she would help with the search and presented it to her colleagues. So, email is a very good route to take. Instead of a GP, maybe see if you can find a local neurologist to help. Christy

Most of my sons issues are GI related. We were never able to find the trigger foods. He used to have severe abdominal cramping/pain, but that has subsided for the most part. His main complaint is nausea, but he is also severely constipated. He, too, has had a lot of GI tests, 2 endoscopies, capsule enoscopy, upper GI, colonoscopy, ultrasound, antroduodenal manometry, and two gastric emptying tests. He had gastropareisis, but the second test 1.5 years later was negative. He may still have it though. We have been told his GI issues are autonomic dysfunction related.

My son is supposed to be graduating in May but may not be done with his classes in time. After he finishes his current classes he will have enough credits to graduate, but may have to complete one or two in the summer. I was not aware that because he has an IEP, he can still participate in the graduation ceremony. The school will just hold his diploma until he finishes up. This is good news, that has been his goal all along, to be able to graduate with his class. Now we just hope on graduation night he is able to pull through and attend the ceremony. Christy

Sorry to see your son is still suffering. My daughter has back pain, she is hypermobile. She takes Tramadol for her pain without any problem. It is really tough trying to get high school boys to do stuff that is good for them at home much less in public. Christy

Your first paragraph somewhat describes my son, except his illness started when he was in the 5th/6th grade(slow progression). He is now 18. He played soccer 11 months a year, and his first symptom was stomach pain/abdominal pain. He has been diagnosed with POTS and MCAS( as Issie described above.) I agree with Issie, that autonomic testing , Tilt Table Test, would be beneficial. Through testing, they also discovered he does not sweat anywhere on his torso. I sometimes wonder if that could have been caused from goalie training(back up goalie, usually a forward), where the soccer coach continually kicked a soccer ball at him and he had to stop it, usually with his torso. Impact after impact. This is a good place to gather information and get support. Christy

One more: He takes pill after pill Yet he remains so ill He takes them all day Quite a colorful array

I wish my son could go to school That would be really cool I wish the POTS would go away Nothing yet has saved the day

Hi Kelly, My daughter is 21. She has recently had to reduce her hours at work from full time to part time. It is not the best job for someone with dysautonomia, she works at an open boarding kennel. The barking and dogs running around overwhelms her at times. They have accommodated her though by letting her sit down whenever she needs to. Christy

Rich, My son has MCAS and has not responded to Zantac, Zyrtec, Pepcid or Claritan. He has also tried gastrocrom with no luck. He is now trying Ketotifen. Dr Afrin said there is a very long list of medications to try. Not everyone responds to the basic anti-histamine regime. Also, now my daughter (who I don't mention on here much because her symptoms have always been mild) symptoms are ramping up. She is my fainter or near fainter, while my son is the nauseated one. She is scheduled to have a skin biopsy done in May. The doctor might do one on my son in the future. My son had the thermoregulatory sweat test done in Cleveland and he did not sweat on his torso or left arm and had reduced sweating elsewhere. From that test, they presumed he had small fiber neuropathy. So a skin biopsy would be more conclusive. Christy

My son had a spinal tap in February and one of the things they tested for was MS. Thankfully it was negative.

So Happy you made it today! Christy

My son had the abnormal Qsart (Case Western University Hospital, Cleveland) and they followed that up with the thermoregulartory sweat test. He never had a skin biopsy. The thermo sweat test showed he didn't sweat at all on his torso and most of his left arm. He had reduced sweating in other areas.

My son's POTS dr is also a neurologist. He has never had a memory test either. Like the others said, mainly coordination tests, ie. touch every finger to thumb, touch finger to nose, walk on tip toes, walk heel to toe, etc.. Checked reflexes...While a cardiologist diagnosed my son, that was the extent of our cardiology experience. In Cleveland we saw a neuro and we have a local neuro.

Yep, my son is currently taking ketotifen. He just started full dose last week. We have to wait 30 days to see if it helps. He hasn't had any bad reactions to it, but he tried Gastrocrom and didn't have any bad reactions to that either(it just didn't help). He had a great day today, those are far and few between. It would be great if it was the medication and not just a random good day. I'll let you know if the ketotifen pans out. We head back to Dr Afrin in SC at the end of April.

My son was diagnosed with gastroparesis in Nov 2009 and was retested in early 2011 and the stomach emptied fine at that time. I wonder if it can come and go. He still has GI issues and the nausea is a constant. Christy

I was watching some of the videos on Prettyill.com by Dr Diana Driscoll and one was about the fingernails moons, or lack thereof. So I looked at my son's fingernails and he has no fingernail moons. The video didn't really explain what that meant, she states she now has her moons back. Anyone else not have their fingernail moons? And can anyone explain what that means? Is it tied to POTS or MCAS? I googled it and it said underactive thyroid. Is this something I should point out to his doctors? Just curious..... Christy

Doxepin was the first medication that my son was prescribed for his POTS by an autonomic specialist. Every time we increased his dosage, his got more relief. Like I said above, at the maximum dose for him, he did great for 6 weeks and it then abruptly stopped. It still helps to some degree though. He has also tried Zoloft, Cymbalta, Citalopram in the past. None of them were helpful and at the same time he didn't feel worse on them either. He doesn't usually have bad reactions to medications, they either help or they don't.

Doxepin is prescribed for both POTS and MCAS. My son had great results for 6 weeks, a couple of years ago, but then it stopped. It still helps keep some symptoms at bay so he continues to take it. When he has weaned off completely he does worse. Doxepin has antihistamine in it.

I was told my son also had an "Intraventricular conduction delay" after an EKG. Apparently, it had showed up before and no one told me about it until one nurse mentioned it like I had already been told that. I was told it is nothing to worry about though. I did mark it in my records of his medical history.