Christy_D

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

I think it might be important to figure out if the nausea is related to POTS bp, tachycardia and such or related to his gastroparesis. I had really bad nausea and zofran worked wonders. BUt the past month or so I have nausea and vomitting that the zofran hardly touches along with other symptoms. I'm having a stomach emptying test done tomorrow morning so maybe I'll have something new to deal with tomorrow I think if nausea is pots/nerve related it is treated differently than GP related nausea/vomitting. I think if the nausea/vomitting is GP related that dr's don't usually try to masked it with medicines because then you can't tell if something is really wrong with your stomach. For example if you have undigested food in your stomach that is there for hours on end then you need to do something to get rid of the fermenting food or help move it along otherwise you risk bezoars forming and other stomach scariness.

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

Christy,

I hung around the Yahoo Gastroparesis support group (when my son was his sickest) and learned more about delayed GI emptying than I ever wanted to know . My information comes from the patients themselves (and their parents ). The tablets rarely work and that dose is HUGE. It could actually be making him more nauseous. See his GI and ask if you could try a liquid form called Ery-Ped 200. Just a 1/2 tsp in the AM before breakfast & a dose at night could make a huge difference.

I think the liquid "E" will help with the constipation too. It did for me & my son. It should calm the nausea, make him more hungry, and able to eat more. If he still needs extra help, consider Miralax. It might be difficult for him to take as it's dissolved in water, juice, gatorade- he has to be able to drink it. Any back-up anywhere in the GI tract (even constipation) can make nausea worse. Also, whether he feels it or not, he's probably dealing with reflux. Make sure that's being treated too. I have my fingers (and toes!) crossed that he's feeling better soon.

I have one other quick question. The doxepin caught my eye. It's a weird med for your son to be taking. I took it when my chronic urticaria was at it's worst and I was actually having some anaphylactic symptoms. Does your son deal with allergy-type issues of is he using it for the antidepressant effect? It's also heavily sedating and made me so HUNGRY I could eat a car. That's probably helpful for him now Just curious, because if he's got allergy symptoms....he might be dealing with something else.

Julie

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.

Christy,

I hung around the Yahoo Gastroparesis support group (when my son was his sickest) and learned more about delayed GI emptying than I ever wanted to know . My information comes from the patients themselves (and their parents ). The tablets rarely work and that dose is HUGE. It could actually be making him more nauseous. See his GI and ask if you could try a liquid form called Ery-Ped 200. Just a 1/2 tsp in the AM before breakfast & a dose at night could make a huge difference.

I think the liquid "E" will help with the constipation too. It did for me & my son. It should calm the nausea, make him more hungry, and able to eat more. If he still needs extra help, consider Miralax. It might be difficult for him to take as it's dissolved in water, juice, gatorade- he has to be able to drink it. Any back-up anywhere in the GI tract (even constipation) can make nausea worse. Also, whether he feels it or not, he's probably dealing with reflux. Make sure that's being treated too. I have my fingers (and toes!) crossed that he's feeling better soon.

I have one other quick question. The doxepin caught my eye. It's a weird med for your son to be taking. I took it when my chronic urticaria was at it's worst and I was actually having some anaphylactic symptoms. Does your son deal with allergy-type issues of is he using it for the antidepressant effect? It's also heavily sedating and made me so HUNGRY I could eat a car. That's probably helpful for him now Just curious, because if he's got allergy symptoms....he might be dealing with something else.

Julie

My heart breaks for you & your son. This was my son's biggest problem as well when he was 12 y/o. He missed a whole year of school. He is 17 y/o now and back full-time. Have hope!

I have a few questions for you. How much erythromycin does he take and when? Often pediatric GI's (even the best!) prescribe this in too high of a dose. It ends up actually nauseating the patient. The trick is to irritate the tum just enough to get it to empty more quickly. Just a tiny, tiny amount can sometimes do the trick, like 1/4 to 1/2 tsp about 15 mins. prior to breakfast. It's also important to take a dose before going to bed in the PM to try to move any food that's left in the GI tract through to prevent morning nausea.

Propping up the head of his bed with a few bricks might also be helpful. My son also kept pretzels in his pocket and ate them throughout the day to calm things down. Make sure he bathes or showers the night before as that heat in the AM will worsen things and make him more nauseous.

I notice that your son hasn't tried phenergan. It has a strong sedating effect, but works as the patient sleeps off the worst of the nausea. Might help at night. Kytril is another one, but we found zofran to actually be a little more effective. Any anti-nausea med will worsen his motility so it's a trade-off.

I'll never forget the wristbands. My son even put them on his ankles, trying to help- so sad I hope he's better soon.

Hugs-

Julie

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 sons GP has just prescribed this med to help reduce sons morning vomiting etc. was on Erythromycin(sp?) but Dr. does not want son building up antibiotic resistance. So have any of you good folk used this?

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.

I'm like KitsaKatsa, nothing hits the nausea where it hurts better than compazine...

if you can let us know what you've tried so far, I might be able to help with alternative pills?

Janey

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.

Brye is on the same page as my daughter Chrissy. Zofran is the drug of choice and I don't know what she'd do without it!

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

its one of my main symptoms too. i was on a brand of domperidone which seemed to do the trick. then the pharmacy changed them.

at the moment im back to my own tricks until i can find the brand i was on.

i slowly chew peppermint gum, sea bands for your wrists, the accupressure points, small portions.

i cant want to get the nausea tabs back!

can i ask what thematabs are?

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.

Hi! I was seriously considering taking the Zoloft that my doctor suggested several months ago. As always, I'm very scared of taking new meds....especially ones that change your brain chemistry! If you have taken Zoloft please tell me your experiences. I want to feel like the "risk" is worth it if you know what I mean!

Thanks!

KC

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.

I've heard of the tall, thin POTS description, I guess that's me: 5' 9" at 128lbs. But clearly, POTS seems to come in all sizes. My 14 year old son's dyautonomia and motility problems started during a RAPID growth spurt. He went from 5' 7" (100lbs) to 6' 1" (145lbs) in a year! His docs have even theorized that with the incredibly fast growth spurt, his vagus nerve hasn't quite caught up. I, also, had a major growth spurt around 13-14 years old. I guess my vagus nerve still hasn't caught up!

Julie

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.

Went to the cardio today and we had a long discussion about salt. I had just been into Boston to the new neuro ( the top one where you wait one year, but because of my tilt table test they took me right in and used my case as a classroom project. They had never seen a heart in such tachy and for so long. They also think something else is wrong with me and we are now redoing all plummy tests) where all they want is to have everyone take salt tabs and water. My doc, said that would be great if you were the normal case. Then he took out a graph of my activities around the house and showed me what my heart is doing. I had just told him how after hydration I went to a Christmas party and dared to dance and thought I would die as I started to collapse walking off the dance floor. I downed every water I could get and someone had to escort me out of there.

The graph made me and him understand why I can't dance and why I had so much time trying to teach my aerobics classes in the past. Boy did I fake it good back then. LOL! He then said If I had the time I would write a book about you. The new docs Neuro want if he would allow to take me off all heart meds and get a baseline and start from there. He understand why but he needs to make them see just what happens to me heart of mine. When he drew the line across the graph, I felt sorry for me the first time.

So I wondered more about if I was getting all my salt and how people buy theirs and where they buy it from. When I priced it out at my pharmacy it was very expensive and I didn't get it and my 4 year old grand daughter took out a dollar five and said I'll buy it for you cause you need it, you have to have it. LOL! The doc said it's rough on the tummy also and I have tummy problems so any input would be helpful.

Thanks, I'm all over feeling sorry for myself now because my cab driver was a young disabled vet who served 8 years and just before he came home got blown up and when I got out of the cab I told him he was my hero and could I hug him. I could feel the LOVE. Now that should have never happened.

Blessings and Love to all of us~

Bellamia~

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.

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.

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.

Has anyone here had weird reactions to this antibiotic? I took part of a pill about 1.5 hrs ago & I still feel weird. When I first took it when I shut my eyes I had strange thoughts & my vision wouldn't focus. I can't imagine what would have happened if I took the full dose of 2 pills. My DH says it not possible that the little amount I took could cause anything. If he only knew how my body works or doesn't work.

I had a strep test which was negative but the dr said it looked like strep. Can a strep test be wrong? thanks.

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.

How many times a day did/do you have to take the tabs for, (son has loads of GI issues) my son has just been put on these to try and reduce his morning vomiting and diarrhea, lovely locum Dr. explained to my son that given all his ANS stuff she would like to treat him as she would some of her diabetic patients that present with this problem. Wow, she told my son not to worry if this did not work as their are other meds out there that might well help him. It is such a pity that this GP is only a locum, she put my poor old son at ease.

Anna

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.