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Posted

My son has been having nausea for months now, and it has gotten worse, also IBS like symptoms as well. He can spend 1 to 3 hours a day in the bathroom. The troubles there vary.

He is now hardly eating anything. His GP encouraged him to have at least some chocolate milk in the AM to help with his insulin (so he doesn't get nauseous from not having anthing and too much insulin). We have done Zantac, Prevacid, PrilosecOTC and nothing has made any difference whatsoever. I have written about his trouble breathing from reflux, and I should say that is better. He still will have an episode now and then but not nightly. Other than that, he wakes up nauseous.

I am pretty sure the GP will be referring us to a GI doctor. Hopefully it won't be 2 months but it wouldn't surprise me and it can take awhile. When my daughter needed a GI Dr. it was almost 3 months wait! I don't think he can wait that long. Besides that, though, it always scares me to go to a new Dr. who may not be familiar with POTS. And this facility is where we have gone previously through neurology and the old neurologist who should have retired long ago put that he was convinced my son's symptoms are psychological (even AFTER he had the dysregulation of autonomic nervous system diagnonosis and POTS from MAYO which he said he respected very much). I guess we will just have to move forward with it but I hate possibly subjecting my son, who has a hard time coping with this to begin with, to that.

Sorry this is so long. I guess I am wondering what kinds of test might be the most productive at this point.

Thanks :)

Posted

Just a thought and I know that everybody is different. We found with TLC that cold drinks on an empty stomach would cause her nausea. She now consumes most of her drinks warm and/or without ice. If she has to have it cold, she will be sure to eat before hand. This is from the mast cell problem she has. She rarely has the uncontrolled nausea now (mostly blood sugar related when she does).

Posted

As you know, my son's main problem since day 1 (5 years ago) has been nausea. He has been able to eat even through the worst nausea because of some of the meds he was taking. Doxepin and Abilify both made him want to eat a lot. He is still on doxepin, but a lower dose than he once was on. So, maybe they can put him on something that will create an appetite. The problem we had was he put on weight because of the eating and not moving.

I don't know if this is an option, but the first autonomic specialist we saw was Dr Gisela Chelimsky. She is a pediatric GI doctor who specializes in autonomic dysfunction. She has written some articles that were on dynakids.org. She is now located in Milwaukee. She is by far the nicest doctor we have dealt with during this long journey of POTS.

Christy

Posted

I'm 15 and I very similar symptoms- nausea every day and IBS. I've been going to a GI doctor for three years and have been diagnosed with GERD and a stomach ulcer. Has he had an endoscopy or colonoscopy? If not they may want to do one to rule out a stomach ulcer/ other problems I have also barely been eating and was put on Prevacid, Zantac, and Zoloft. Unfortunately none of them have helped me and we are going to try something else. I hope you can get an appointment soon! :)

Posted

Would an elimination diet be worthwhile? I have mast cell symptoms with my POTS and have tons of food triggers that I'm trying to sort out. Lots cause nausea. The top ones that trigger mast cells for people are chocolate, cheese, tomatoes and alcohol.

Good luck and keep up posted.

Posted

This is my most debilitating symptom. Has he tried anti nausea meds? I go through spurts where it's awful and won't eat or drink for 2-3 weeks but then it's somewhat tolerable for a few weeks. There are many times I will sit in the bathroom for hours because it's so bad. I went to a GI for the nausea and he's the one that diagnosed me with pots. I have severe reflux also but I'm not sure if the meds for that help with my nausea or not. I would be fully functional if I didn't have this nausea. I hope you find something that helps.

Posted

I know this is a tough symptom to have. I remember when I first started college I had extreme bouts of nausea where I couldn't anything all day. I didn't know what I had at the time but I remember just thinking to myself "You gotta eat something or you're going to have to quit school." I found that I could hold down apples.

Posted

Christy, I wish we could (even debated going to see them inst. of Beverly), but we can't travel right now. From what I hear they have a pretty long waiting list right now, anyway, too.

PL, Thanks for the encouragement. This has been one of his main symptoms for the last year, except for summer. Hope you get answers, too!

ana, an elimination diet might be a good idea. Thing is he eats very little. He actually didn't have any chocolate till recently when his Dr. told him to have it, used to eat a lot of spagetti (tomatoes), used to eat a ton of cheese but has had none for a few weeks, and no alcohol. Still, it wasn't any scientific measurable thing, so maybe.

Micheller, he has a scrip for Zofran but hasn't used it in a long time. Used to be we figured out his worst nausea would last maybe an hour or so and that by the time the med worked he would probably be improving anyway so we stopped it. I just asked his Dr. about it last week, but she said no, not right now because he already takes so many meds, didn't want to add that into it. She wants to see if the Prilosec is having any positive effect (not really, not enough). Now his nausea is all day, though, so will be having a conversation with her tomorrow.

Posted

I agree with doing an elimination diet but in order for this to be a good test, give him real foods only.

Plain meats, fruits and veggies. Easy on the fruit. Go slowly removing gluten and dairy tho as these

can be addictive.

Cara from gluten free and beyond went thru a similiar situation with her dd. Testing, etc proved negative

and finally the child was accused of doing it on purpose. Cara's dd responded to the gf diet. Her story

is on theglutenfile.

Tc .. D

Ps. Fwiw, I can't believ this doc recommended chocolate milk. lol

Posted

Sort of off topic but I also found that drinking beverages that are warm/ hot are much easier on my stomach than cold drinks. A cold drink almost immediately triggers my GI symptoms; it was too the point when I was little that even cool water would cause a POTS attack.

I've been nauseated every day since I was 8. (19 YEARS!) Nothing has relieved it for any length of time. Accupuncture / Accupressure helped for a little bit, but then insurance stopped paying for it. Sometimes ginger ale / ginger can help for a little bit. I found eating helps too even though that's the last thing one wants to do; small bites every fifteen minutes or so, just so my stomach is never empty. Also, a few drops of strong alcohol can sometimes short circuit the nausea.

I also never eat dairy in the morning - that will make everything much worse for me (I'm borderline lactose intolerant.)

Also, probably TMI but, keeping the bowels moving seems to make the nausea less severe. I'm always constipated, likely due to my EDS and when constipated, the nausea is SO much worse.

Sara

Posted

Ha, Dizzy, when she did that she acknowledged it would seem strange, but at the time he was doing chocolate protien drinks in the AM and she thought too much protien right off is hard to digest, so just chocolate milk, with a straw. I do get Nestle which isn't made with HFCS. Mostly it is to gently get some carbs into him early is the purpose.

Posted

kcmom,

I have periodic bad bouts of upper and lower GI issues (have spent many nights on the floor in the bathroom.) I have found that when I have these combination bouts, that I need to take both Belladonna and Promethazine . If I address only the nausea, and not the abdominal cramping and diarrhea, I can't get out of the cycle. The Belladonna alkaloid (Donnatal, Phenobarbital) addresses the IBS symptoms (and also helps relax my nervous system so my overall hyperPOTS symptoms let up for a few days). The promethazine then seems to have a chance to do its work. I don't take either of these drugs daily as they are both habit forming but it seems I don't need to. If I can get everything calmed down, I am able to stop taking them within a few days. I have defintiely found that the anti-nausea meds are not enough by themselves.

http://www.drugs.com/mtm/donnatal.html

Hope you can find something for him. I know that this set of symptoms is just horrible.

Katie

Posted

I just thought wow if anything would make someone puke, it would be milk. Lol

I eat part of a banana first thing in the morning, then some real food. I've been nauseas from

my h pylori tratments for 2 weeks now and found that lemon water helps. No sugar or other sweeteners tho.

Btw. He can add select processed foods back later. This is just so he feels better sooner. My gp did this to me because I was so sick. I just wouldn't make processed foods his norm.

Hope he feels better soon. Tc .. D

Posted

I weighed him today and he is down another 3 lbs. He doesn't throw up, just gets really sick feeling, can't eat. Then sometimes, almost always between 7 and 10 pm he can eat, then he ends up in the bathroom a short time later, and it doesn't matter if he eats bananas and applesauce or chili, pork chops or chicken and potatoes. He is about 50th percentile so still a good weight but it will get serious soon, when he first got POTS he was about 98th percentile, so he had it to lose, and actually way back some of the weight loss was through managing good food choices but that was almost a couple years ago. This fall he has probably lost 15 lbs just not eating.

Posted

Wow- it's like we have exactly the same thing going on. I just lost fifteen pounds from not eating, but I never throw up either I just can not stand the thought of food.

Posted

Do you have acess to an integrative doctor in your area ? They could help you sort this out. Fwiw,

I'd be nauseas too if I ddn't eat until 7 - 10 at night. Imho, Since he's not puking, he needs to try to eat

something throughout the day. Even if it's just a few bites. You may have to push him at this point

because he might be equating nausea with vomitting. As a mother who had morning sickness I recognize the difference.

Also, lemon water settled my stomach due to antibiotics. Some use ginger tea, peppermint tea or oil, etc. for some reason, I needed the lemon water this time. Maybe some charcoal would help too.

Bland foods are the easiest to digest. Lightly cooked veggies are ok but raw would

probably tear him up.

When I first came down with celiac disease in 2005, I lost a lot of weight. My stomach

or small intestines felt like I was eating glass with every bite. This lasted at least 6 months

but it was eat or starve. Peas, asparagus, chicken, fish, apples and pears minus the

skin were all I could eat without feeling horrible.

I went the traditional medicine route but my gastroenterologist didn't even check for celiac

disease. He's not my gastro anymore.

Hope he feels better soon .. D

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