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Gi Dr Is Done With Us, No Help, So Bummed


kclynn
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He gave my son Erythromycin, then Bethanechol, I also said no to Reglan. They made no difference. Then he had done an EGD scope and Colonoscopy. They did biopsies. Every thing is normal but my son has exactly the same trouble, can't eat and too much BR time, WAY too much, daily. He gets nauseous thinking of eating sometimes, sometimes forces himself to eat, usually nauseous with that, feels full very soon, sometimes he can eat a lot and this is usally late, in the early evening and 2 hours later he has to go with varying results.

So now what, they have written him off. The GI Dr. was nice and he did say he knew nothing of Dysautonomia, but that his problems would probably resolve when the rest of his symptoms do. That's great but he has to live like this for several more years?

Now the GI doctor says his issues aren't GI so he is done. So frustrated! What are we to do now? I know so many of you have been here, I have read your posts so mostly I am venting :(

The local Cardiologist we use who does understand pots/dys won't treat anything other than the cardiac symptoms (no neuro or GI symptoms)

We dug out an old scrip for Zofran. It seems to help some with the nausea but too early to tell. I don't imagine it will help with the BR issues though.

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Hugs .. This really *****. Fwiw tho I went thru a very similiar experience. When my gi was done with

all his tests on me, my gp finally told me about food intolerances. I was po'd at the time because she'd known

for years that foods could cause my symotoms but chose to send me to a gi for months of testing instead.

If you have an hmo and a gp, yours might do this too. I'm assuming this is how it works. If not, imho, a functional

or integrative doc would be a good option now. Otherwise, you could try changing your son's diet on your own.

Btw, lemon juice in warm water helped my nausea when I had h pylori. It worked better than pepto.

Has he been tested for h pylori and parasites ?

Tc .. D

Ps. This idiot gi didn't find my celiac disease either and I'm fairly certain it was there.

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Domperidone and doxepin are on my list to ask about.

Dizzy, they did test and biopsy for celiac and h pylori, negative.

Issie, I will have to get some new probiotics. We have used them in the past and didn't really notice any help but no they won't hurt. Maybe a different brand will help.

Dizzy, while I do feel that for some diet changes can help a lot I can not do that right now, nor get him to an integrative Dr. We tried one last fall, but she just wanted to refer us to another Dr. an hour in the wrong direction. There was more to why I didn't pursue it, though. I don't know of any others around here.

The main reason I can't do diet changes right now is that I broke my leg badly 3 weeks ago and am non weight bearing for the next 2 months at least and so am at the mercy of the folks from church who are bringing us food. I can't even get to my own kitchen, much less cook. Hubby is doing all he can to keep the house running and keep his job. I so appreciate the suggestions, though. Sometimes ones you have heard before make sense at a different time.

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kcmom,

I take a very good probiotic and enzyme and order it from a place that gives 30-50% off retail. If you'd like to know what I use, PM me.

Sorry to hear about your break - I'm still recovering from a horrible break of about a year ago. Of course, I have a plate and 10 screws and it will never be quite right again. Hope you recover fast and have good sucess in your rehab. That's the most important thing - work with PT and get it back strong again - do what they tell you and the results will be so much better. I did exactly what they said and thankfully - I can walk without too many issues.

Issie

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Kcmom,

Sorry to hear about the broken leg! Owwww. Do look into the doxpein, it helped Cody for a short while and then stopped. But it has been the only medicine that has helped and it still does help some of his other symptoms. Cody no longer sees any GI doctor either, he was dismissed by the local GI and we stopped traveling to Cleveland to see our all time favorite doctor(who is moving to Milwaukee,WI next month).

Cody just got diagnosed with MCAS and that doctor is going to look at the biopsies from previous endoscopies to see if mast cells are in the GI tract. Have you looked into MCAS as a possibility? Dr Afrin believes it plays a large role in many people with POTS.

Zofran never helped Cody, and we just tried phengran(sp) and ativan with no help from them either. If you find something to help the nausea let me know.

Christy

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Christy, I will look into Doxepin. Dr. is now looking into domperidone. I started a new thread, apparently I took the word of the nurse but have since talked to the Dr. I wonder how many patients are sent on their way on the word of nurses when the Dr. might have been willing to try more.

Send me an email and let me know how you are doing :)

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Christy, I decided to call and ask and they said they do look for Mast Cells during the biopsy. What the nurse said is "If they see them they usually count them out and note them on the report" for what its worth. So no mention of mast cells, does that mean no mast cells? Hmmm...

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Thanks, Issie, I had 3 breaks, 2 pins, 5 screws, 2 plates :( Nothings guaranteed, but I will do what they tell me. Already have home health coming for pt. Can you PM with the name of the site and brand of probiotic?

I know they have to do a special type of staining procedure to look for mast cells. Did they do it that way?

Sorry about your leg. It does sound bad. Where did you break it? I broke my foot off my leg and broke both ankle bones off and shattered the side leg bone into bits and tore all the ligamants off. They got everything re-attached and back on - still have pain from it and swelling - but, all in all - feel pretty lucky. I had a really good surgeon and he did a good job. Real important the PT.

I will PM you the supplement info.

Issie

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Issie, O my Gosh! That sounds horrible! Mine is bad enough, 3 breaks and a dislocation. 3 months no weight bearing, I did have surgery. I think he is a good surgeon, know others who he has done surgery on and everyone loves him, including the hospital staff, I have 2 pins (will remove) that are holding the tendon, bunch of screws and hardware, and two plates. Lucky me. One of those things that really sets you on your butt when you think everything is so bad. Now I know, things stink (the fibro/cfs mom taking care of the potsy teen) but really, could be worse. AND it is amazing how many people have broken their leg at some point in their life and had to be non weight bearing. This is my right foot so does make it so I won't be able to drive the entire time, but my son got his DL which we had put off and it really has had an amazing impact on him to be needed and have that trust and freedom, too. He has lots of limitations with it, of course but he feels awesome about it.

I do not know if they did any special staining.

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It really set me back - was in a wheel chair for almost 6 months and it messed me up royally with POTS - not to mention the weight I gained from not being able to move around and then that didn't help when I started to move around. One thing it did for me - made me realize not to go into a chair - if there is ANY possible way to avoid it. It has taken me so long to just get back to a smililance of a baseline with my POTS and endurance being in that chair. You realize how hard it is for handicapped people that have to be in a chair. Since I have EDS - I couldn't use crutches - but, had to use a walker and that nearly killed my shoulders alone - not to mention my hip on the other side that was taking all my weight. It wasn't a fun time.

I'm sure your son is happy to have his license and I know mom is going to be glad to have the help in the next few months. Hang IN There! You're going to have a lot of ups and downs. Just PM me and I'll try to cheer you up. Been there - done that! Hope to NEVER do it again.

Issie

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