Gastroparesis

[Laura]

Help !!!  My son has suffered with severe vomiting on and off Since October 99.  He has seen three dr's and was rushed to the ER due to dehydration and not eating for 5 days in a row.  He has been hospitalized one week and I don't feel the dr did enough tests:  The following tests were done:  ultrasound of liver, gall bladder, and pancreas.  Another dr. did the endoscope all met with negative results.  He will be ok for around 2-3 weeks then suffers again with constant vomiting.  The dr. has concluded this is Gasteoparesis but I think it is something more.  He is also very slow to have BM's will go once every 3 days or less without the aid of stool softeners or laxatives.

Does this dx sound right?  The dr. expects him to continue school without homebound even on the times where he is very bad.  He has also had Elavil for one year due to migraines and I not discounting if this is gateo that may have caused it.  He is l7 now and had a reflux history when younger.  How long does gaseoparesis last before he will be 100% again?  Anything else possibly causing this?  Should other studies have been done because is bilrubin was up to 3.4 in hospital.  Thanks again.

Any answers or suggestions would be so appreciated

[to: HFHSM.D.-Gastro-RF CAN U SEE GASTRO]

It would be appreciated if u could comment on the gasteoparesis post. Please.

[Jeannine]

Laura,

Im sorry to hear about your son.
I have Gastroparesis and my Dr did a Gastric Empty Scan to
see how long it takes for my stomach to empty.Having reflux
can go along with gastroparesis.For some people thats how
it starts. I have the same problem with BM's, I have been taking Miralax and it is very helpful.It may be worth trying just
to get things moving regular and then try switching back
to a more natural way.
I find its imperitive to keep the bowls moving or things
just stop and then its reverse gears.
I have also had a EGG-Electrogastrogram,this measures the
pacemaker activity in the stomach. If it is slow/abnormal
this may cause slow emptying/vomiting.Not all people with
Gastroparesis have abnormal pacemaker activity.

There are other conditions: Abdominal Migraine,this can cause
vomiting and abd. pain. Cyclical Vomiting Syndrome (CVS) is another condition that causes repeated bouts of vomiting.
It sounds like a motility disorder of some sort for sure.
Some people have Viral Gastroparesis and this may resolve
over a ........period of time. Ideopathic Gastroparesis
means= no known cause, the outlook from what I've read and
have been told personaly is symptoms are often more severe
and can take a long time to resolve if ever.I would see a
Motility Specialist. Try a major teaching hospital in your state.

I get migraines and my Dr had tried migraine meds to see if it
helped.(no luck there) I also have chronic upper abdominal pain,worse after eating.Oh, sometimes there can be a Neurological cause for vomiting.
All Dr's have different experience and diff. ways of looking
at an illness so a second opinion is always good to get.
I strongly reccomend a Motility Doc.

Motility Med's that mayhelp: Propulsid,
Domperidone-only avail in Canada & was not
given FDA approval for the USA,so you can order it and have
it Fed-x to you & Reglan.I have taken Domperidone for about
a year and had to discontinue,I had to keep increasing the
dose over time and ended up having side effects.
I hope this info is somewhat helpful to you. I feel for your
son and you, its a very frustrating situation.Hang in there!
Feel free to e-mail me if you need.

Jeannine   ***@****

[Jeannine, I forgot....]

This web site is worth checking out:

www.dailyfutures.com/gastro.html

when you get to the bottom of the first page
"click" to see info and helpful
hints re: gastroparesis

[Mary]

I"m writing to let the persons family that is concerened about gas starting a chane reaction to make the heart beat faster. Your the only one i ever found that has the same symtoms as i have. I have a pounding in my stomach that isnt there all the time but when it seems to get gas in my somach i have pounding in my heart that makes me lay down( i can feell the pounding coming from my stomach and going to my heart) until i pass gas usually. I cant figure it out maybe we could get together and email and see whats up if any doctors out there can figure it out please let me know i have a lot of heartburn and a soreness in my middle back. Been for a ultrasound nothing there one doctor even sugested that i could have an anerisum. What to do? Dose anyone else have this?
Mary ,michigan

[Cyndi]

Dear Mary - I have been having simialr problems - stomach discomfort, gas, belching, that causes heart pounding and racing.  Still undiagnosed, but going thru testing of liver, pancreas, etc. and taking med for possible parasite/bacterial infection.  But have been told there's not a real link between GI stuff and heart palpiations.  Don't know what to think.
Cyndi

[Eva]

Hi Laura,

I feel for your son.  I started with stomach troubles when I was 12 years old and was not diagnosed properly until 15 years later.  I too am rushed into the hospital sometimes twice a week.  You should find a gastroenterologist who specializes in this problem.  I found one in Hershey, PA.  If your son is not emptying enough acording to his EGG they might suggest giving his stomach a break. They might suggest a feeding tube that will let him live at home, attend school, have a life! Then he would hook up for then hours or so to an iv machine.

[Eva]

Hi Laura,

I feel for your son.  I started with stomach troubles when I was 12 years old and was not diagnosed properly until 15 years later.  I too am rushed into the hospital sometimes twice a week.  You should find a gastroenterologist who specializes in this problem.  I found one in Hershey, PA.  If your son is not emptying enough acording to his EGG they might suggest giving his stomach a break. They might suggest a feeding tube that will let him live at home, attend school, have a life! Then he would hook up for then hours or so to an iv machine.

[Eva]

Hi Laura,

I feel for your son.  I started with stomach troubles when I was 12 years old and was not diagnosed properly until 15 years later.  I too am rushed into the hospital sometimes twice a week.  You should find a gastroenterologist who specializes in this problem.  I found one in Hershey, PA.  If your son is not emptying enough acording to his EGG they might suggest giving his stomach a break. They might suggest a feeding tube that will let him live at home, attend school, have a life! Then he would hook up for then hours or so to an iv machine.

[Eva]

Hi Laura,

I feel for your son.  I started with stomach troubles when I was 12 years old and was not diagnosed properly until 15 years later.  I too am rushed into the hospital sometimes twice a week.  You should find a gastroenterologist who specializes in this problem.  I found one in Hershey, PA.  If your son is not emptying enough acording to his EGG they might suggest giving his stomach a break. They might suggest a feeding tube that will let him live at home, attend school, have a life! Then he would hook up for then hours or so to an iv machine.

[Eva]

Hi Laura,

I feel for your son.  I started with stomach troubles when I was 12 years old and was not diagnosed properly until 15 years later.  I too am rushed into the hospital sometimes twice a week.  You should find a gastroenterologist who specializes in this problem.  I found one in Hershey, PA.  If your son is not emptying enough acording to his EGG they might suggest giving his stomach a break. They might suggest a feeding tube that will let him live at home, attend school, have a life! Then he would hook up for then hours or so to an iv machine.

[Eva]

Hi Laura,

I feel for your son.  I started with stomach troubles when I was 12 years old and was not diagnosed properly until 15 years later.  I too am rushed into the hospital sometimes twice a week.  You should find a gastroenterologist who specializes in this problem.  I found one in Hershey, PA.  If your son is not emptying enough acording to his EGG they might suggest giving his stomach a break. They might suggest a feeding tube that will let him live at home, attend school, have a life! Then he would hook up for then hours or so to an iv machine.

[Eva]

Hi Laura,

I feel for your son.  I started with stomach troubles when I was 12 years old and was not diagnosed properly until 15 years later.  I too am rushed into the hospital sometimes twice a week.  You should find a gastroenterologist who specializes in this problem.  I found one in Hershey, PA.  If your son is not emptying enough acording to his EGG they might suggest giving his stomach a break. They might suggest a feeding tube that will let him live at home, attend school, have a life! Then he would hook up for then hours or so to an iv machine.
    Laura the other thing that you need to know is certain medications and foods can start to shut you sons stomach down.  My nuerologist said Elavil slows the motility of the stomach which is something you don't want.

Good luck!

My e-mail is ***@****

[margaret]

I recently had an endoscopy done and the doctor
put me on prevacid and another medication that
I take before lunch and dinner.  So far it
has helped, however, I had a visit to the doctor today and he did say that if I should
start having problems again he would send me
to Boston for another test to look down the
esophogus again.  He mention the possibility
of a rare disease, but I have forgotten the
name of it.  I do have a sliding hernia and
he did stretch my esophogus.
The reason for the endoscopy was because of
a lot of heartburn and stomach discomfort.
Would you know the name of the disease?

Thank you

[margaret]

I recently had an endoscopy done and the doctor
put me on prevacid and another medication that
I take before lunch and dinner.  So far it
has helped, however, I had a visit to the
doctor today and he did say that if I should
start having problems again he would send me
to Boston for another test to look down the
esophogus again.  He mention the possibility
of a rare disease, but I have forgotten the
name of it.  I do have a sliding hernia and
he did stretch my esophogus.
The reason for the endoscopy was because of
a lot of heartburn and stomach discomfort.
Would you know the name of the disease?

Thank you

[Allen Young]

Laura-

As others, we are sorry to hear about your son.  It appears that my wife has diabetes-induced Gastroparesis (self diagnosed), and we are trying to establish a dietary regimen for her.  One website with some rather specific help is "www.gicare.com/pated/edtgs08.htm".  This is from an organization called "Jackson Gastroenterology", and what they say seems to make sense.  One further note, my wife regularly uses MAGNESIUM CITRATE as a laxative to keep things moving.  The one from Walgreen's is the best tasting.  For her, about 1/2 bottle per night keeps things going.  The specialist she has consulted thus far on this issue is head of Digestive Diseases at Baylor Medical Center in Dallas, Texas.  She has been using Propulsid in combination with the Magnesium Citrate, but has recently switched to Erythromycin (2cc 30 minutes before every meal and once at bedtime) because of renewed concerns about Propulsid.  We wish your son the best.
                            Regards,
                                Allen Young

[angela]

I have been diagnosed with Gastroparesis and I vomit after I eat.  I have had numerous tests done that reveal I have delayed emptying.  I have tried all of the medications usually prescribed to treat this but none have worked.  I am now taking Kytril which is used for chemo patients and this doesn't seem to be working.  I have lost 18 pounds in 3 months and now weigh 100 pounds.  Does anyone have any suggestions on the next step I should take?  I have been seeing my physician for 2 years and he is great but I'm getting desperate.

[Dina]

Could someone please please help!!  My 6 yr old has had problems for 3 yrs now. He has been diagnosed with heat exhaustion, (wrong), CVS, hiatal hernia, and his nissenfundiplication he had done at 10 mths of age has come undone.  They have done test after test after test!!!  He is going in next week for a ph probe. He had a endoscopy done, Upper GI, gastric emptying study, heart card,.... etc.  With the nissanfundiplication, they took a piece of the top of his stomach, and wrapped it around his esophagus and sewed it shut, to keep him from refluxing his food.  He had a severe case when he was a baby. Now, they think he does not have CVS, nor heat exhaustion, but reflux again, and he does have a hiatal hernia, (moderate size).  However, when he gets an episode, which is about once or maybe twice a mth, he will turn pale, crawl up on the couch, say his stomach hurts,  sometimes to the point where he feels like someone is stabbing him in the back, go to sleep for a few hours, and wake up and everything is fine!!   Once in a while, he will vomit after the episode starts.  I am lost for words and also lost for an answer!  This has been going on for 3 yrs now and has progessively gotten worse, not with vomiting, but with more frequency and pain.  Please, if anyone else has this problem or knows of anyone, please e-mail me at ***@****.   Thank you very very much

[Mary]

Cyndi well if you figure out what our problem is let me know at ***@****. if you want to email just to talk about our problem let me kno. If anyone else has any of our symptoms let us know im getting tiered of haveing a stomach that is pounding all the time its now like gas pain its like gas moving around and not going out the right way. You get so much of it that it pounds back up. Wish there was a cure ive been taking gasx how much if anyone know can a person really take of that? I would like to know maybe I could stand a higher dose. Well everyone keep in touch. Hope are stomachs all get better. Be waiting for your emails

[Kathy]

My son has a number of unusual medical problems for which we have been seeing physicians over the past 6 months. Since the beginning of September 1999, he has lost 45 lbs. A 48 hr. stool collection at Mayo Clinic at the first of this year indicated that way too much fat, calories, vitamins, etc. was passing straight through without being absorbed. Also, he did have a gastric transit time, which I see some of you mention. He had EGD with biopies the previous day so there was nothing in his stomach prior to the transit test. He was fed a few bites of scrambled eggs, 1/2 piece of toast and 4 oz. of milk, followed by a radioactive contrast material, and x-rayed every hour for 7 hours. At the 7th hour, only 26% of the food had made it to the small bowel. Therefore, they diagnosed him with gastric dysmotility.

We know his autonomic nervous system was ravaged by something. One possibility is a pheochromocytoma tumor, too small to be located, and quiet at the present time. This would explain 100% of what has happened to him. However, despite an exhaustive work-up, one cannot be found, at least not yet. A second alternative we were told was that the Epstein-Barr infection he contracted in August of 1998 caused his autoimmune system to attack his autonomic nervous system. This would explain everything BUT the weight loss.

He does not gag vomit, nor does he have diarrhea. However, he now eats a bagel with stawberry cream cheese during the day (and forces himself to do so) with a carton of milk. He is not actually hungry until at night for dinner. His appetite has decreased by I would say 80%, at least. He weighed 210 lbs. on 8-23-99; by 9-20-99 he was down to 190 lbs. and yet was eating like a pig (football, basketball and baseball player, in addition to weight training). He was a big kid, typical football player (quarterback) at 5'11. Now he looks like a very thin tennis player. Went from extra large shirts and 36 in. waist pants (typical slightly baggy as teens wear) down to medium shirts and his waist is just under 31 in.  If he eats what for him is now a rather large dinner (1/3 of what he used to consume for dinner), he isn't hungry again until the next evening.

I have read about some medications, etc. that can be used to help with these problems. Any suggestions from anyone?

Thanks!

[Joey]

23YRS. AGO I BECAME PREGNANT WITH MY FIRST CHILD,AND WITH WHAT WAS THOUGHT TO BE HORRID MORNING SICKNESS. AFTER DELIVERING I CONTINUIED TO HAVE PROBLEMS WITH VOMITING AND STOMACHE PAINS. I SAW DOCTOR AFTER DOCTOR, WITH ALL OF THEM TELLING ME THAT THEY COULD FIND NO PHYSICAL PROBLEM. I WAS TOLD THAT I WAS DOING THIS TO MY SELF AND THAT I WAS BULIMIC! IN MY HEART I KNEW THIS WAS NOT TRUE SO I CONTINUED MY QUEST FOR A ANSWER. I COULD NOT BEGIN TO COUNT THE HOSPITAL VISITS OR THE MANY MEDICATIONS THAT I HAVE BEEN ON. AFTER 23YRS. OF PAIN,EMBARRESSMENT AND TO MANY NEAR DEATH EXPERIANCES CAUSED FROM ELECTROLYTE IMBALANCES, I HAVE BEEN DIAGNOSED WITH GASTROPARSIS. OVER THE YEARS I HAVE TRIED ALL THE MEDICATIONS THAT ARE USED FOR THIS AND NONE HAVE HELPED.I TRULY THOUGHT THAT I WAS ALONE WITH THIS DISEASE,I NOW SEE THAT THERE ARE MANY OF US WHO SUFFER. I GUESS THATS ABOUT ALL FOR NOW.
              DON'T ANY OF YOU LOSE FAITH THAT WE WILL FIND A CURE.                      GOD BLESS,
                                    JOEY

[Joey]

23YRS. AGO I BECAME PREGNANT WITH MY FIRST CHILD,AND WITH WHAT WAS THOUGHT TO BE HORRID MORNING SICKNESS. AFTER DELIVERING I CONTINUIED TO HAVE PROBLEMS WITH VOMITING AND STOMACHE PAINS. I SAW DOCTOR AFTER DOCTOR, WITH ALL OF THEM TELLING ME THAT THEY COULD FIND NO PHYSICAL PROBLEM. I WAS TOLD THAT I WAS DOING THIS TO MY SELF AND THAT I WAS BULIMIC! IN MY HEART I KNEW THIS WAS NOT TRUE SO I CONTINUED MY QUEST FOR A ANSWER. I COULD NOT BEGIN TO COUNT THE HOSPITAL VISITS OR THE MANY MEDICATIONS THAT I HAVE BEEN ON. AFTER 23YRS. OF PAIN,EMBARRESSMENT AND TO MANY NEAR DEATH EXPERIANCES CAUSED FROM ELECTROLYTE IMBALANCES, I HAVE BEEN DIAGNOSED WITH GASTROPARSIS. OVER THE YEARS I HAVE TRIED ALL THE MEDICATIONS THAT ARE USED FOR THIS AND NONE HAVE HELPED.I TRULY THOUGHT THAT I WAS ALONE WITH THIS DISEASE,I NOW SEE THAT THERE ARE MANY OF US WHO SUFFER. I GUESS THATS ABOUT ALL FOR NOW.
              DON'T ANY OF YOU LOSE FAITH THAT WE WILL FIND A CURE.                      GOD BLESS,
                                    JOEY