Hi-
Does anyone know how to interpret results from a gastric emptying study?
My 8 yr old son only has 14% emptying at 2 hrs compared to 44% emptying at 2 hrs a few yrs ago. He is worse at night and can only eat a small amount of nonfat food throughout the day. We can not seem to keep up with his nutrition. He complains of nauseau, vomits 2x/wk usually at night and has chest pain (heartburn i guess). He is on 30 mg of prevacid and 17 gms of Miralax. My question is he going to have to go to a feeding tube? I am really scared. He is going to start Reglan today. I am worried about the side effects, but I have to give him something to get him more comfortable. Can I get doperidone for a child?
One more question, he is being treated at CHOP in Phildelphia, but I am thinking about getting a second opinion at Nationwide's Children in Columbus, Ohio. Has anyone seen Dr. DiLorenzo? He seems to be the expert in this country.
Thanks!!
revery
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gastric emptying study and results
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MiraLax Phenergan Tube feeding Zantac Prevacid Gastroparesis Beta blockers Pneumonia Probiotics Topamax Bronchitis Peripheral neuropathy Erythromycin Reglan Dizziness Lansoprazole Compazine Cardizem Fentanyl Diabetes Weakness Pain Memory Neurontin Heart attack Lyrica Heartburn Diarrhea
43 replies
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- Newest first
- By revery
- Posted December 29, 2008 at 9:52 am
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Is there anyone out there who can help interpret my son's results from above?
Thanks!!
revery
- By chewy1
- Posted December 29, 2008 at 1:32 pm
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Revery,
I wish I could answer your question but it has been so long since I have actually dealt with the numbers that honestly don't remember how the numbers all work. I do know that it sounds like his percentage is definitely very low right now.
I do know that the rate can change though and the percentage can be different from one day to the next so hopefully his may not always be as low as 14% but I'm not sure how you are to find out for sure.
There are many people on this site who do have feeding tubes. You might try posting a question asking for anyone who has experience with them in particular to respond. I know that Charity is very experienced withTPN and might be able to help with some of your questions in that area and has been dealing with these problems from a very young age too.
I'm so sorry your son is having to face so many problems at such a young age. I wish I could offer you some advice. My only suggestions would be to seek help at a large teaching facility like Mayo Clinic or some place where they specialize in pediatric care.
I know facing these problems at my age is scary and frustrating so I can only imagine how awful it must be for an 8 year old.
I will keep him in my thoughts and prayers.
Judy
- By revery
- Posted December 30, 2008 at 9:45 am
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Thanks, Judy. That was helpful. I didn't realize the results can change from day to day.
Thanks for your support.
- By chewy1
- Posted December 30, 2008 at 11:53 am
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I have had several scans done over the past 9 years and have had several different results but I have had two or three different GI doctors tell me that I could have a scan done two days in a row and have different results even having them that close together. I'm not sure how much difference it would be at that point though but I always thought that was interesting. Another thing that I found out last year was that in my case my stomach has actually switched for delayed emptying to rapid dumping which came as a big shock to me. I found this out at Mayo last Dec. I asked my GI doctor there about that and he told me that they were seeing that happen more often too but he wasn't sure if it was acutally that something was causing a change in people's stomach or if the testing changes were actually just catching the changing more often now.
Anyway, I still think it sounds like your son definitely has enough of a delay that he needs some help. I hate to think of him being on Reglan and I'm just basing that on my own experience with it. It caused me to have some awful side effects so I hate to think what it might do to a little guy.
Judy
- By screamer
- Posted December 30, 2008 at 12:18 pm
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Please know the side effects. I lost muscle strength on reglan it was scary. I would just drop. It is a scary drug. Liquid shakes might be an option for him for nutrition. If reglan doesnt have side effects it is great. Keep him eating or drinking a little bit several times a day but dont force him. I have had gastric emptying problems for years now and it comes and goes in severity. i might have had it a long time. I dont eat much at a time. Ensure makes good nutrition drinks. Chewable vitamins help me also. I cant imagine hving a child with these problems. I am sorry. I have kids and I know you must be hurting too. He probably sucks it up as kids do. Just keep an eye on him with the reglan it took a month before I reacted to it. It built up in my system. I would seek out the best if you can do it. Good luck and I will pray for you and your son.
Jeni
- By revery
- Posted December 30, 2008 at 1:43 pm
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Thanks, Jeni. I am scared b/c he was complaining about feeling tired and that his muscles hurt.
Rachel
- By lilpeggy
- Posted December 30, 2008 at 5:41 pm
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uugh... i can so relate to the feeling too :( of course, mine isn't as severe as your son's - but its just that in the afternoon or evening i'm basically scared of eating *anything* cause it just won't digest. its so weird. i can handle food in the morning to early afternoon but then thats it basically.
sometimes meds don't seem to work well.. and i agree with you, i really don't like sideeffects (whether they show or not) and the long term use from it
but i wishh you & your son good luck with the treatment :)
- By Novagrad
- Posted December 30, 2008 at 6:15 pm
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I think your son's results are pretty delayed. I have severe GP and a feeding tube and it's not the worst thing in the world. I have a "button" tube and it is unnoticeable to the outside world. It's well-hidden under my clothes. I feed at night for 12-14 hours so that may be an option as well. He would need a j-tube in order to bypass his slow stomach. I also had side effects of Reglan and it never did much for me. My doctor told me that domperidone would have the same side effects so it was not worth trying (I also tried erythromycin and Mestinon with poor results). CHOP is supposed to have some very good pediatric motility experts, but another opinion always helps. I went to the Mayo Clinic for another opinion. How old is your son? Was his poor motility with just food or liquid as well?
Mimi
- By revery
- Posted December 30, 2008 at 8:09 pm
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Hi Mimi,
Adin is 8 yrs old and was a colicky infant. He was given Zantac and levison drops as young as 6 wks old. He first test was an upper GI series when he was 2 with liquid and he had marked reflux and delayed emptying. Now at 8, he is on 17 gms of Miralax, 30 mg of Prevacid and 8 mg of Reglan/day. I am going to stop the Reglan and start on my own some digestive enzymes. Do you know anything about Digest Gold? Darla told me about CREON enzymes. I never asked Adin's GI, but I think I will at our next visit. Thanks for the info on the feeding tube. We may have to go down that road. Apparently at CHOP, they do not have the motility tests that Nationwide Children's Hospital has such as manometry and targeted therapies. I am just so frustrated. 8 yrs and we still have not made any progress.
Thanks for your thoughts.
Rachel
- By Char
- Posted December 31, 2008 at 11:14 am
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Rachel,
I hate to see that your son is having to deal with this at such a young age. As for the emptying scan, I've always been told that in a 2 hour scan anything less than 60% emptyed is considered delayed. I know my first one only 4% emptyed. I don't remember what it was the next time I had the test, but I know it was pretty much the same. The same day I had my first test I had my first feeding tube put in.
I'm allergic to Reglan, so I don't really have experience with that.
Tube feeds aren't as scary as they seem when you start them. Having the fluids and nutrition should help him feel some better. Tube feeds might not be my favorite thing, but it does help. I have a gj-tube so I can get feeds passed my stomach and can also drain my stomach. I'm currently back on TPN, but hopefully not for long.
I went to Mayo and had the monomatry test and a few others done. By the time I went to Mayo we had tried all the med options and had started the process of getting a gastric pacer approved, and after the test at Mayo they recomended the pacer, since I was out of other options. It was nice to know that we were doing all there was to do. It never hurts to get a second opinion.
I hope the Reglan will help your son and he doesn't have any side effects from it.
Charity
- By revery
- Posted December 31, 2008 at 11:56 am
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Thanks, Charity. I appreciate your reply. Wow, you were pretty young when this all started. Do you know why you have gastroparesis? Is it thyroid or diabetes or idiopathic like my son? This is such a tough condition as there is not much out there to help with the symptoms. Have you ever tried a combition of zofran and phenergan for nausea? Do you have the pacer now?
Thanks for your thoughts!!
Rachel
- By Char
- Posted December 31, 2008 at 1:39 pm
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Rachel,
My gp is idiopathic. While the doctors and my family would love to know what caused it, we have decided that unless they think of a reason and it would make things better (and not just giving it a name) I would not go though more testing. It is so hard when you can't really do a lot to decrease the nausea. Being nauseated can make you feel so miserable and then to not really get a break from it makes it even harder.
I do take Phenergan and Zofran round the clock. I also take Marinol and compazine when it gets really bad.
I love my pacer. The one I have right now is my 4th one. It took a while, but I was finally able to move back to tube feeds (hadn't been able to tolerate them, so was on TPN for a few years)and get off the TPN. I do still have bad spells where I can't tolerate the tube feeds, like right now, so I'm back on TPN until I can get back on the tube feeds.
I hope your son can get some relife soon,
Charity
- By Novagrad
- Posted December 31, 2008 at 2:00 pm
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Hi Rachel:
I understand being frustrated with your own doctors, no matter how good they are. Second opinions, and even third ones, can be so beneficial. I also take Phenergen and Zofran routinely. Since I'm NPO right now, I'm doing Zofran (which dissolves on my tongue anyway) and Compazine suppositories which help with the nausea. I'm also on TPN right now because of problems with my feeding tube (don't worry, feeding tube problems are very rare).
I have not heard of Digestive Gold or CREON enzymes, but it's worth discussing with your son's doctor. I've taken some enzymes without much help. I have absorption issues as well and I feel so much more energy on the TPN.
My GP is from autonomic neuropathy. I actually have slow motility throughout. Almost no colonic or stomach motility. I was told from some doctors that I may need a colostomy, but I don't really have much small bowel motility. The autonomic neuropathy started after my third anaphylactic shock (three different medications each time). It's so weird how that sparked it but it did.
Good luck with your son. I can't imagine going through all of this as a child. My nephew had gastroparesis that he recovered from after having RSV as a baby. His case was not that severe and he's doing great today.
Mimi
- By blackbear26
- Posted January 1, 2009 at 1:23 pm
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Hi,
I know so little about the feed tube but do understand the nausea. I have small fiber neuropathy that is idiopathic and I treat my nausea currently we reglan,mestinon and probiotics. The probiotics while expensive have been the most helpful. Maybe this is something that you could look into?
I'm just a few miles from Nationwide Children's Hospital and while my children our grown, I know that the hospital is expanding and is the number three hospital in the country for pediatrics. They must be doing something right there.
Oddly enough though I have a dignosis of EDS (Ehlers Danlos Syndrome) and I seek treatment at Cincinnati Childrens Hospital to the Genetics dept. there. I guess it depends on the field of expertise you are looking at.
Good luck with your son! This can't be easy for either of you. I hope that you find the right doctors soon, as well as the right medications.
Sherri
- By screamer
- Posted January 1, 2009 at 2:27 pm
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I am very glad to hear you are stopping the reglan. That is a good decision. I think it is a dangerous drug and the fatigue he feels is not good.
Jeni
- By revery
- Posted January 1, 2009 at 6:46 pm
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Thanks Jeni for your reply. I am now just giving a dose of Reglan at night. A very small dose just 2 mg and he is on the Digestive Enzymes by Enzymedica. They seem to be helping the most.
I appreciate everyone's input. It is so hard to see your child so sick at night throwing up. I wish it was me instead of him.
Happy New Year!
Rachel
- By revery
- Posted January 1, 2009 at 6:49 pm
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Hi Sherri,
Which probiotics do you take? Can you email the website?
Thanks so much!
Rachel
- By screamer
- Posted January 1, 2009 at 8:28 pm
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I thought you stopped it all. If he has any muscle weakness call your doctor right away it can become permanent. i am not trying to scare you just inform you. I hope it is working right. I am sure you will keep your ey on it. You have my prayers and I agree I would much rather be sick than see my kids that way. Mine are older than yours and i still feel that way.
Take care.
Jenni
- By revery
- Posted January 1, 2009 at 8:41 pm
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Ok, I hear you...I will stop it tonight and discuss with my doctor on Monday.
Happy New Year!
Thank you!!
Rachel
- By screamer
- Posted January 1, 2009 at 9:41 pm
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Yikes I dont know if you can stop that cold turkey. Call your or his doctor and let him know you want to get him off of it and why and he will tell you how to do it the right way. Some things you need to wean off of more slowly and i dont remember if this is like that but dont take a chance call his doctor to see how to do it so he doesnt have an unpleasant experience.
Jeni
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