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Asking questions for a parent of a POTS patient


Guest Julia59
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Guest Julia59

Hi everyone,

I spoke with a gentleman yesterday about his daughter who is pretty sick. She has gut motility issues and is sick with nausea and vomiting almost on a constant basis. She also suffers from disabling fatigue, tachycardia, OI, low blood pressure, and more POTS symptoms.

I told him I would be happy to ask our discussion forum on POTSPLACE about her gut issues.

She is also on B complex 50mg, and they are thinking about putting her on a beta blocker---lopressor--(spelling?)

She is also on Zelnorm 3 times a day-(very high dose), but she has gastroparesis/stomach---not in the bowel. And i'm thinking the nexium they have her on may make the "motility " worse. I have read a couple of medical journals on acid blocking drugs----and it stated that your acid reflux can actually get worse creating a vicious cycle.

They said the "acid reflux" is actually a sign your stomach is not producing enough acid for digestion, thus slowing the digestion process, thus the back up of the acid. If you think about it---what did they do before these drugs were invented---people got by from taking antacids and other drugs. Actually stopping the process of acid production can have adverse affects. She is also on B complex 50mg and they are thinking about putting her on a beta blocker---lopressor--(spelling?)

Stomach acid is NEEDED to digest. The reason she has the heartburn is because the food is sitting in her gut too long----if they can find a way to move it through faster, then the acid wouldn't back up. I wish I would have saved the one article---i'm going to try to find it in the archives in our newspaper---it was several months ago, maybe more. She is seeing Docs at the Cleveland Clinic, and so far they don't seem to have helped her much---one of them is a gastroenterologist, the one who is prescribing the drugs for the "motility" problem.

Don't quote me on this at all---i'm just saying it makes a lot of sense, just my opinions based on what I read, this doesn't mean those journals/articles are right, but it is something to think about. It seems the pharmaceutical companies are creating drugs that cause so many side affects--or adverse affects that they have to create more drugs to alleviate those. That's a lot of revenue----------hmmmmm

And furthermore, this poor girl isn't getting any better with the treatments she is getting...........sooooo

The motility has to be secondary to some type of autonomic neuropathy.

They did discuss a abdominal pace maker which is invasive---but maybe the only thing that will truly help. At least until they find an underlying cause for the neuropathy that is causing the gastroparesis.

Those of you who have "gut motility issues"-----------what is the treatment plan they gave you, and does it work to your satisfaction?

I told him he should take her to an Autonomic Nervous System expert. I told him that Dr. Grubb is only two hours away, and also said his nurse practioner BEV is great. He is also trying to find a good neurologist----you all know how hard those are to find, as most of them have very little knowledge of the ANS----which is shameful as this is an integral part of our nervous system.

Dave, Dr. Grubb's address is 3000 Arlington Ave. Toledo, Ohio----Ph# is 419-383-3963.

Please, can anyone help? When I was sick with motility issues in the beginning, I refused to take the acid inhibitors, and just broke down my meals to very tiny amounts of food several times a day to keep my stomach moving. I believe my issues were mild, and they corrected themselves, but I rarely have a "good" day with gut issues, I still struggle with bowel motility. I just feel blessed I don't have the nausea and vomiting that many of you have.

Thanks to anyone that can help.

Julie :0)

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I'm so sorry to hear about how much trouble she is having.

I also have gastroparesis and gut motility problems. I wish I had a magic pill, but I can tell you what has helped for me.

First, I had Metamucil everyday for a couple of months, and it did help. I got some ginger tea that is supposed to help, but I just don't like tea much, so I had trouble talking myself into it. When I had a spinach salad everyday and some metamucil, the problem was under control most of the time.

Regular, mild exercise helped sometimes, if I was well enough to do it. Sometimes, though, especially during flare-ups, my food would just sit in my stomach all day, and nothing seemed to help. BUT, the motility problem just stopped, all by itself, sometimes, too.

I was on Nexium for a few days, and that caused diarrhea with me, which was welcome!

I hope that your friend improves and this becomes a non-issue for her soon.

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Hi,

The only thing I can help with is a pediatric neurologist. Are they from the Cleveland area? The Dr. we know is in Mentor, which is about 30-40 minutes east of Cleveland. He's fabulous. He's with the UH system however, I don't know if he refers to the CC or not. His name is Dr. Morris Levinsohn 440-946-6725.

Patti

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Guest Mary from OH

Julie,

It sounds like this person's treatment is right on target. My daughter's case is similar, but more involved. In addition to having GERD and GP, my daughter has MAJOR colonic motility issues.

The meds the child is on seems to be correct. The Zelnorm is the med that is "pushing" the food through their digestive tract. The Nexium is a PPI (proton pump inhibitor), but does not stop all acid production. From the meds you listed, she is not on any meds to neutralize the acid. The reason the PPI has to be used with GP is because with the GERD, the acid will cause permanent damage to the stomach and esophagus.

The Zelnorm helps move the food contents along in the digestive system, empty the stomach etc...

My question would be is: has she ever had COMPLETE motility testing? By this I mean tests called for the upper GI area - an anteroduodenal motility test and for the lower GI area - a colonic motility test. For these tests the catheter is placed under sedation (upper during fluoroscopy and lower during genreal anesthia). You are then hooked up to a supercomputer, etc.... One remembers this test.

Let me know if I can be of further help. This happens to be an area of my "specialty". I have been dealing with it for my daughter for the past 6 1/2 years.

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Guest Julia59

Mary, the treatment you talk about makes sense---but unfortunately they need to get to what's behind the motility problem. PPIs are not helpful for her and do nothing for the motility so far. I think her father said she is getting worse.

I know he said they did some test to check for the GP-------but i'm not sure which one, or they probably would not have recommended the gastric pace maker.

I'm looking into some studes on PPI----

http://jama.ama-assn.org/cgi/content/short/294/23/2989

http://www.mercola.com/2005/mar/16/prilosec.htm

http://www.mercola.com/2002/dec/18/nexium.htm#

I think there is a place for them---like with acid reflux, but some studies are showing problems with long term use----or that can can even further aggravate a problem-----even acid reflux. I'm just concerned-----and for sure i'm no expert on this.

He does not believe the Zelnorm has helped either. She sounds pretty severe---and I think in need of a very good neurologist who actually knows something about anutonomic neuropathy with associated gastroparesis.

I just think Gastro Docs need to look at this with a different angle---and work with an ANS specialist or a neurologist who has experience with autonomic neuropathy affecting the digestive process.

Thanks for the information---I will be e-mailing this link to her father and he can read the responses, and maybe sign up for the forum himself. it sounds like he will need you help Mary----I just don't have a ton of experience-----and you have first hand experience. I am concerned that they just mask the symptoms and don't reat the actual problem---thus making a vicious cycle on one problem feeding the other.

Take Care,

Julie

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Julia,

I've had pretty severe problems with this in the past 12 months and spent a week at Mayo recently doing the tests Mary mentioned and more. I wanted to establish just what you said - what the root cause was and they confirmed that everything is OK structurally, but it's the autonomic system that's malfunctioning. I too would advise your friend to seek this out. The doc I saw at Mayo was Dr. Szarka and I was very happy with him and his understanding of it all.

I am not young, so Mary may actually have better advise, but I will tell you that for me the treatments that have helped...Protonix, and Reglan until I had a bad reaction to reglan. Now I'm on Protonix and Domperidone which is working great! Still occaisional nausea, but really pretty normal stomach wise for me. Zelnorm did not help me and actually made things worse because my lower gut was working fine (unlike Mary's daughter) which again speaks for the testing because it can different parts of the gut for different people.

Hope this helps or at least gives them something else to look into.

~Roselover

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hi julie -

i've been pretty quiet on here as of late but wanted to chime in at least briefly, particularly as i gather the fater/daughter you're speakinf of are in the cleveland area. as i think you know i had MAJOR motility issues last year (we were discussing the gastric pacemaker as well as feeding tubes) and thankfully now they are at least quelled; i have discomfort & can't eat large meals but have gained weight back and only get sick (throw up) a few days a month.

i do have slow motility from my stomach down rather than just my stomach so that does change things a bit, but like mary said zelnorm is not just for slow intestinal motility; it has been shown to increase stomach motility as well. this of course does not mean that it works for all (as nothing does, unfortunately).

so....what has helped me?

mestinon - it's "side effect" of speeding up the GI tract (due to increased nerve transmission/activity) has been a HUGE help to me GI-wise. actually more of a help to me in this realm than for any other issue(s). my neuros, docs at vandy, GI docs, & dr. grubb have had this success with some others.

reglan - some help but i started having scary neuro side effects after about 2 months. i take it now intermittantly without trouble.

zelnorm - was the first thing that "got me going" from top to bottom again last year...before i started the mestinon it allowed me to keep some solids down.

protonix - i know you're concerned about reducing the acid, but like mary mentioned the point of reducing acid is not for the motility but to deal with troublesome issues that can accompany it. for me without the protonix i have reflux b/c even at my best my food stays in my stomach WAY longer than the norm...and if/when reflux kicks in it often triggers my actually vomiting. and reflux can do major damage to the esophagus. i do think meds are prescribed a bit too much at times but this doesn't mean they're always the wrong decision.

erythromycin - i haven't given this one a shot yet but have the Rx on hand for my next flare-up. generally the "consensus" on it among docs/patients seems to be that it is often helpful in the short-run but not long-term. as an antibiotic the motility help is again a "side effect".

i'm sure i'm forgetting something(s) but those are the "biggies" for me. i am on all of the above now either regularly or as needed. dehydration can also make nausea/vomiting even worse so it can become a nasty cycle. the moment i have trouble keeping things down i find getting IVs for me is more helpful then than trying to wait it out. but honestly when i was at my worst last year it wouldn't have made a difference (other than hydration obviously being a good thing in general).

last but not least a few things regarding specific docs. without knowing how old she is (even approx.) i'm not sure whether she is limited to only peds or can also see an adult/general specialist. obviously i don't know who she is seeing at the clinic but i do know when i thoroughly looked into setting up a GI appt there for myself when i moved to cleveland i essentially found out that they currently have no one (for adults at least) that specializes in motility issues...other than esophogeal. this doesn't mean they can't be helpful but for me meant i wasn't sold on it being the best place for me. they used to have a gastroparesis specialist but he's no longer there.

on the other hand i have found a GREAT GI doc at university hospitals (also in cleveland, associated with case western) who is very familiar with motility & autonomic issues, works with dr. chelemsky (the neuro who is an autonomic specialist at the same locale), etc. i was even asked to participate in a research survey re: autonomic issues at my first GI appt. so...i'm not sure how young of patients he sees or if there's any chance she's old enough but he's not TOO long of a wait (compared to many specialists) and is a really nice & knowledgible doc. even though i'm hanging in okay these days we've already discussed a few other options to try if things act up again for me...

his name is Gregory Cooper & the appt. # is 216-844-5386. his office # is 216-844-8500.

hope this helps. feel free to let me know if i can be of any other help...

:) melissa

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Well I have Autonomic Neuropathy (autonomic dysfunction) which caused POTS and Gastroparesis. I basically got all these conditions over night so we are unsure of the cause.

I do know that things got alittle better once I stopped my PPI. I was on it for 1 year and heard it slows digestion. I believe it does to some degree.

I just started on domperidone and it seems to be helping with the nausea which was my main symptom of GP.

I think if you address the autonomic issues it might help the GP. But I do know with Autonomic neuropathy, even though it might resolve on it's own, there is no cure so symptyom management is key to helping the symptoms.

My GI said he thinks if we address the volume it might help with the stomach so they prescribed Florinef but due to migraines could not tolerate it.

I really hope she finds answers or help because I know first hand how this illness can alter a person's life.

I find alot of support at a gastroparesis at yahoogroups. I think he can access the site by going to www.G-pact.com or just duing a search.

Alot of people on that site find relief from their vomiting and nausea with domperidone or reglan.

If you have any other questions he can email me personally at DSM3kidz@yahoo.com

Dayna

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Guest Julia59

Thanks so much everyone----all of you have been so helpful---I can't say it enough...

Melissa, I think they are going to The University Hospital, but I can't remember what Doctor they said she will see, but the information you gave me will assure they go in the right direction if they haven't already---- :) .

Dayna, thank you for the information on support groups for gastroparesis patients----- :)

Thanks again to all the rest of you for being so caring and supportive of this girl and her Father.

Julie :0)

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