Christy_D

I know exactly what you are saying. My son will be 15 next month, and I constantly clear his desk of plates,cups, empty snack bags, etc.. I also feel like because of his sickness and everything he deals with (he hasn't been able to attend school for a year now) that I am helping him, but at the same time spoiling him. I've said I feel sorry for his future wife, since I wait on him so much. I bring him food on trays and wait on him(escpecially in the morning thru midday when he is sickest). But I wouldn't do this if he was a healthy child. Even his sister waits on him, and I feel he is probably taking advantage. It is a fine line, I am helping him because he is sick, but on his good days I should make him do more. Also, what is small bowell dismotility? Next week we are going back to Cleveland for further testing, and they are going to do a capsule endoscopy to look at the small bowell better. He has been diagnosed with gastroparesis, but is still nauseas daily. He is also constipated, going once every 3 or 4 days. Christy

The day my son had his, he was having a good day, so his came back borderline. His legs did turn purple though. They had him take off his shoes, and he said his heals were killing him.

I asked a doctor near me if he would see my son, even though the doctor is a neurologist who treats adults. He said since there is a lack of autonomic specialists in our area, he is willing to see children with autonomic issues. Perhaps, your doctor would make an exception and see your child.

My son's bp doesn't drop, but his heart rate jumps from 20 to 50 beat from lying to standing. His main complaints are GI related. He complains of abdominal pain on the right side. All tests came back fine. At his appt with the autonomic dr., they noticed he no longer has reflexes on the right side where he complains of the abdominal pain. His main complaint now is nausea that lasts most of the day. He was also diagnosed with gastroparesis in November.

I live in St Louis and currently take my son to Cleveland for treatment. Let me know who you see in St Louis, every dr. we've seen here thinks it's anxiety, so we gave up getting help here. They still think it's anxiety even though the psychologist said "not anxiety or depression." Very frustrating. It would be great to not have to travel 9 hours(especially during snow season). Thanks, Christy

My son was diagnosed with gastroparesis in November. He is taking erythocin(spell?). So far still nauseated. I left a message with his doctors office, but they must be gone for the holidays-they said they would email her. I'm sure she will need to see his file, list of all meds he is on and has tried. We go back to Cleveland in 3 weeks. Hopefully he will get some relief soon. He did have a good Christmas, was functional earlier than usual. Maybe mind over matter since it was Christmas.

When my son has a migraine, there is usually no stopping it with oral medications. His neurologist sends us to the emergency room and he calls ahead with instructions. They give my son an IV of Toredol, Reglan and Benedryl. He falls asleep due to the Benedryl and 4 or 5 hours later we go home- migraine all gone. Nothing else seems to work. His prescribed migraine medication is Tramadol. If we give him this for a headache it works, but not for migraines. Christy

He does take a glass of gaterade with Miralax daily. He doesn't have a problem with it(he doesn't like generic brands though). The doxepin was prescribed I believe for his other autonomic issues. They chose doxepin because he also deals with insomnia. When he first started the doxepin it knocked him out and he was sleeping good, but not anymore. He is back to dealing with insomnia also. He was also diagnosed with restless leg syndrome. The doctor's plan B is Cymbalta instead of Doxepin. I've read that works well sometimes with Abilify(spell?). Since he started the doxepin he rarely has body temperature issues, which he used to deal with alot. He was constantly taking his shirt off and saying it was hot. His abdominal cramping has been decreased. He also would sometimes have legs so weak, he couldn't walk. That too has gone away. So, we are left with this dibilitating nausea.

My son takes 250 mg tablet in the morning and another one before bedtime. Since taking this for the last month, his nausea hasn't gotten any better or worse. No effect really. We are also tracking how often he goes to the bathroom, (BM). He is still constipated. So his stomach might be emptying quicker, but he only has BM's every 3 to 5 days. Sometimes only after giving him a laxative(which he hates!). As for the head of his bed, we bought him an adjustable bed(like in the hospital). Although, frequently, when I go in his room in the morning he is still laying flat. I guess I should prop up the head of the bed and then take the remote with me so he can't flatten it back out. Thanks for the input, Christy

My son tried this under the name of Reglan. It didn't help. He currently takes the Erythrocin. He started taking this in November for gastroparesis. He is still nauseated though.

He has taken reglan, zofran 8mg, diazapam 5mg, periactin 4mg, trimethobenzamide 300 mg, meclizine 12.5 mg. We have tried everything over the counter, including the wrist bands. His physical therapist showed him on his hand where to apply pressure to reduce nausea, nothing works. We go back to the doctor in January, and I would like to show them a list of other possibilities that have helped other people.

He has already tried Zofran, and no luck. Thanks though.

Salt tablets. His nausea predates any of his current medications though.

My son was diagnosed with autonomic dysfunction in June. We went to Cleveland in October to seek help from the people who know about it. He used to experience abdominal cramping, weak legs, body temperature too hot, migraines, nausea and dizziness. He was diagnosed with POTS, autonomic neuropathy and gastroparesis. With medication, we have been able to get all of the symptoms under control, except for the nausea. He wakes up every day nauseated, and he is unable to get out of bed until about 2:00 in the afternoon(on a good day). He is 14 and has not attended school since last February. He in on homebound schooling and is taking on-line classes. We go back for further testing in January. He has tried every over the counter medication for nausea, no help. He has also been prescribed several medications, no help. What does anyone else do for their nausea? This seems to be the last stumbling block we have in getting him back to school and having a social life. He is currently taking Fludrocortisone, Doxepin, Erythocin, and thermatabs.

My son feels awful every morning and cannot get up and function until about 1 to 2 in the afternoon. Sometimes, like yesterday, he was in bed all day. He did not get up until today. But usually by 2 in the afternoon he is functional. We have his homebound teachers come at 5:00 in the evening, as he is usually better by then.

My son took Zoloft for 5 months. It didn't hurt or help him. He had no side effects, but none of his symptoms got better either.

My son's problems also became much worse when he grew 7 inches in 15 months. He used to be very thin, but now that he is sick daily, he doesn't exercise or play sports any more. He over compensates with food in the evenings when he is no longer nauseated. He is probably a normal weight for his height 153 lbs for 6 feet tall, but he is out of shape.

I buy them for my son at Walgreens-100 tablets for $5.99. You have to ask for them from the pharmacy. They keep them behind the counter.

Aha, that may explain a lot. I do think it's gotten worse since adding the mattress topper. Mack has oodles of aches and pain & the tempurpedic helps tremendously. It even came with an "iso-Cool" mattress pad- further corroborating your take on things.... Thanks- Julie My son's room also has male odor. He is almost 15. FeBREEZE! When I take the sheets off of his bed, I also Fabreeze his mattress. This seems to help alot. My 18 year daughter rides him relentlessly about this, but she doesn't understand the difference between a teenage boy and a teenage girl.

My son has a temperpedic adjustable bed. Temperpedic mattresses are so dense that they do not breath and people sleep hot with them. (I also happen to work for a bedroom furniture/mattress retailer) The sales person warned me that the mattress didn't breath and people complain of sweating when they sleep.

Every time my kids are tested for strep in the doctors office(the quick test), it comes back negative. The doctor always sends it out for complete testing and it comes back positive.

My son started taking erthromycin last Thursday for gastroparesis. He takes a pill twice a day with food. We are hoping this helps with his nausea. He wakes up every morning with nausea, sometimes with abdominal pain. He has not gone to school since last February. He was diagnosed with POTS and autonomic neuropathy in October and with gastroparesis last week. He does not have any reflexes on the right side of his abdomen where he has his abdominal pain. We are in St Louis, but are seeing doctors in Cleveland for his treatment.