Christy_D

They refrigerated my sons. He had to stay in the hospital for other tests and they collected there. The nurse kept it refrigerated.

My son was prescribed them for nausea, didn't help. He didn't experience any side effects either.

My son had that test done in March. He had to spend the night in the hospital with tube/probes in nose/stomach. When they went to do the test the next morning the probes had moved out of the intestines and into his stomach, so they had to scrap the test. He had to start over the next day and respend the night in the hospital. This was the first test he has had that he finally was tired of being a 'lab rat' as he put it. The good news was, everything was fine, so there was no nerve damage in the intestines.

Since my last post to this question in March, my son is doing ALOT better. His blood test came back extremely vitamin D defecient. After taking vitamin D supplements for one week, he is now sleeping through the night on a regular schedule. His other symptoms are less severe as well. My son had barely gone outside for over a year. If your son isn't getting vitamin D from the sun, maybe have his blood check.

My son had a capsule endoscopy in January. He had to swallow a camera the size of a large pill Then we left and had to keep him up and walking around for several hours while the capsule traveled through his intestines. He had wires hooked to him and a "fanny pack" like contraption that captured all of pictures. We went back to the hopsital, they took off the wires and fanny pack, and we were done. There was nothing too it really. For my son, they were checking the small intestines for Crohns Disease. They were unable to get into his small instestines during a regular colonoscopy. Everything checked out fine. It was one of the easiest tests he has had to endure.

I can't comment on Cleveland Clinic since we never went there. My son sees Dr Chelimsky(and his wife) and he has been great. They have a full autonomic lab for testing. They also treat. Whenever I have questions, I call his office and speak to his nurse and she is quite prompt about getting the info I need from the doctor. I am not sure about a cardio, as we didn't need one.

That was very touching. It made me teary.

Some medications can cause it. Check the side effects of the medications you are currently taking. My son had it bad when he was taking Topamax.

My son also has brain fogs, not daily though. It was really bad when he was taking Topamax-he could barely get out a complete sentence. Some medications can cause it, if you're taking any meds, see what side effects there are. Maybe it is making it worse for you.

The stomach moves the food out too slowly. The nerves that make the stomach contract to push the food into the intestines don't work properly. My son takes medication that irritates the nerves(that's how it was explained to me) to make the contract to push the food into the intestines. My son's intestines contract fine, they tested him for that, so it is just his stomach. If the food sits in the stomach too long, it can ferment and make you nauseas.

This is my son's main complaint. He wakes up every morning nauseated and can not get out of bed. It has gotten better recently though, he is able to get out of bed around noon now instead of late afternoon - til early evening. He does have gastroparesis and takes medication for it. They have done alot of GI related tests and are now believing his nausea in neurological. He may be having silent migraines or it is just part of the migraineous process. He used to have terrible migraines that would end him up in the emergency room with IV painkillers.

My son had taken Topamax to stop his migraines a couple of years ago. The day he started the Topamax, he has not had a migraine since, BUT, the side effects of Topamax can be terrible. We had to take him off because he had trouble speaking complete sentences, bad brain fog, and his nausea got worse. He was on it for 5 months. Since he is still in school, the brain fog issues was terrible. But like I said, he has not had a migraine since, even though he hasn't taken it for 1 1/2 years. The nickname for Topamax is Dopamax and he surely knew why. Just moniter the side effects, I'm sure they're not that bad for everyone.

My son took it 2 years ago, but it brought his resting heart rate down to 46 so he had to stop. He actually was up to 100mg a day, and he was, symptom wise, much better. The problem was he wanted to sleep all the time. His grades plummeted even though he was able to attend school, his "lights were on, but no one was home". The lower doses didn't seem to help his symptoms.

Dr Thomas Chelimsky is a neurologist, who sees people I think 12 and over. Dr Gisela Chelimsky is a pediatric gastroentrologist. Since my son's main symptoms at first were mostly GI related, we were referred to her, but we get to see both since he also has other symptoms as well(migraines,etc) They not only test, but they treat, which is great since we were unable to find a doctor here(StL) to help. They are both so nice, on our last visit she could see I was worn out and she just gave me a big hug. She said she was chronically ill as a child and knows what we are going thru. (fun trivia fact- Dr Thomas Chelimsky was in the movie Charade with Audrey Hepburn and Cary Grant when he was a child)

I loved the doctors at University Hospital, since they not only diagnos but treat. Do you see Dr Chelimsky? We see both Chelimsky's for my son. They have been great. They even did an office visit in his hospital room so we didn't have to come back for another visit. We live in St Louis and I call her(Dr Gisela's) office for updates on how he doing on different meds. They are both very compassionate doctors.

I guess I should add, that we drove to Cleveland so we weren't having to take taxis or anything like that.

We have been to Cleveland four times and we stay at the Holiday Inn in Mayfield Heights on Beta Dr. It is 8 miles from University Hospital which isn't far from the Cleveland Clinic. We could stay closer, but we kinda like being out in the 'burbs. There is shopping not far up the highway with a cinema,etc. Plus the hotel has a really good Italian restaurant in it. There are closer hotels but we liked the area. You can google earth to look at the area or mapquest from the hotel to the hospital to see how far it is.

We take my son to University Hospital in Cleveland, which has a full autonomic lab. His doctors scheduled several tests for our trip there. They organized it all to squeeze in as much as possible. We were told to stop medications before we came, I think like 5 days prior, in order to get accurate test results. My son was treated by a neuro and gastro dr. I would think if you're traveling that far they would get done as much as possible to avoid repeat visits. Our doctors, after our visit, were also able to order some of his GI tests through our local hospital once we got back home.

My son takes ibuprofen for headaches and he has not had any problem with it.

My son had a sleep study done last September. They diagnosed him with Restless Leg Syndrome. They also did not take his POTS into consideration, but they also wouldn't give him any medication that they normally give for it because of the POTS. They had my son going to a sleep psychologist trying to get his insomnia and eratic sleep hours turned around, but she wouldn't listen to the other symptoms he also had to deal with. The psychologist wanted him up and out of bed every day at the same time. She didn't understand how he wakes up nauseated every day and can't get out of bed. So I stopped taking him. Starting 2 weeks ago, his sleep completely turned around though once he started taking vitamin D. He falls asleep every night by 11:30 and is waking up in the morning. It has only been 2 weeks, but I'm hoping it holds out and hopefully doesn't revert back. So basically the sleep study just added another diagnosis, but they weren't really able to help. My sons POTS doctor took the route of giving him a medication for his POTS that also had a sedative in it to try to help him sleep (Doxepin). It worked for a couple of weeks but then stopped helping him sleep. So, now it's the vitamin D.

My son had the TST test done in January. With that test they also diagnosed him with small fiber neuropathy. He did not sweat on the entire midsection of his body or on his upper left arm. This helped explain why he hates any heat on his stomach, abdomin area(doesn't even like the heat from sunlight through a car window).

Several doctors before my son was diagnosed blamed it all on anxiety. Once he was diagnosed by a cardiologist(who still didn't know much about it), they still wanted to blame it all on anxiety. My son is a mellow as they come, so I knew they were wrong. We finally decided we had to go to Cleveland to get help. We go to Case Western University Hospital. The first thing they told my son was, "this isn't in your head". They kept reinforcing this, to let him know it was definitely a physical problem. We travel 9 hours every 3 months, and I don't mind it, because of the care and great treatment they give my son. I just got fed up with every doctor that was local. They weren't interested in evening reading anything I had, close minded.

My son had the thermoregulatory sweat test, plus the Tilt Table Test, along with MRI and several gastro tests at Case Western University Hospital in Cleveland. They have a full autonomic lab there. The sweat test showed that my son has small fiber neuropathy. I asked the doctor the significance, and basically it was for further diagnosis. My sons main problem symptom is nausea. They did lots of gastro testing to find the cause of the nausea, and were able to rule out GI related. They have determined the nausea is neurological. This helps in what drugs to try to help eleviate it. We have had a great experience there. They are not giving up on trying to help my son. They are very caring doctors. We have made progress with my son. We just got back blood results a couple of weeks ago showing his vitamin D is very low. He is showing improvement with the vitamin D supplement. On our last visit there, the doctor came and evaluated my son while he was in the hospital to save us time and a trip to his office.

So far it is helping my son. For several months through the winter until now he had gotten so much worse with his symptoms lasting much longer and more severe. I hope the vitamin D gives you some relief as well.