causes for delayed gastric emptying, gastroparesis?

Hello, I am so relieved to find this group! My 5 year old daughter got very ill in mid-May, with what we thought was a stomach virus. It was just a 24 hour bug, but followed by increased intermittent stomach pain throughout the week that we thought was leftover from the virus. By the end of the week, the pain was so intense, and happened hours after she ate anything (she is very small btw) we went to the ER. She vomited two buckets of green bile, which began our frustrating week in the hospital. She was tested for many, many things, her catscan and ultrasounds were clear, but it wasn't until 4 days into our stay that the ped gastro diagnosed her with post viral parylitic ileus and said that it would clear up within a couple of days. Reglan seemed to work for a couple of weeks, but as we dosed down, as recommended, she relapsed and we ended up in the ER. She had a second relapse last week, and we kept her out of the ER by dripping bits of gatorade into her mouth every five minutes (which still caused her pain) increasing her reglan again, and have added prevacid and zofran. She is a very small child to begin with, and had food allergies as a baby---The results of gastric emptying studying showed that even with the reglan she has extreme gastric emptying. She is scheduled for an endoscopy tomorrow. We've been researching this, and feel so overwhelmed! I can't find many reasons for the cause of gastroparesis other than diabetes 2 and a few other rarer diseases. Her doctor said he will be looking for bacteria and inflammation, perhaps due to allergy. Any thoughts or other's experience is very welcome!! Our family is so worried about our little girl, and feel frustrated by the lack of information (and slow to figure things out) we are getting from the doctors. These are good doctors, but info. is limited. Thanks for listening!!

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hello ... i'm sorry that your little one has this illness. it must be so hard to watch her in constant pain ...
i don't know what your dr told you ... severity of her condition. one thing i do know is that if her GP was caused by a virus, it could be reversed. like i said, this is if ... and if she gets the right treatment. so, i hope she has good doctors. you'll find a lot of information on this site ... about diet, treatment options, support, etc ...
i'm also one of the lucky ones. western medicine failed me so i turned to eastern medicine. because my dr (eastern) was able to figure out the root of my problem, she said that i'll be ok after about a year of treatment. i'm in my third month and i feel that i'm getting better. i'm not saying you should run out and find an eastern doctor for your little one ... i'm letting you know that there is hope ... don't give up. most drs do not know much about this illness so you have to do a lot on your own. that's where this website will help you a lot.
i wish the best for your daughter ... i'll pray that she finds the right care and that she'll get better.

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Yes, it could certainly be post-viral gastroparesis and the good news is that is the one kind that can go away. Is she seeing a motility specialist? It is very important that you get to the bottom of this before too much damage is done.
I have suffered from dysmotility my entire life but never knew what it was. I have had so many different diagnoses over the years- IBS, colitis, food allergies, stress, etc. Finally at the age of 56 I got a diagnosis of small bowel dysmotility and colon inertia. Generally this is associated with lupus, scleroderma, or diabetes or other auto-immune disease, but in my case is it not (primary and idiopathic- which means not associated with another disease and of unknown origin).
My doctor now thinks the damage to my digestive system was the result of a bad illness or infection that I had as a child and was just never diagnosed.
So you are lucky that you are catching this early hopefully before too much damage is done. I really encourage you to seek out a motility specialist- generally you must go to a major medical center to find one.
Good luck- there is nothing worse than watching your child suffer! I will pray that you get to the bottom of this and find out what is causing it.

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By the way- just thought I would add two things: I know you are probably worried about endoscopy on such a small child. To reassure you- my daughter had a colonoscopy at the age of seven weeks! She had been passing blood- turned out to be allergic reaction to nuts and peanuts in my diet that was passing through the breast milk. She made it through the colonoscopy just fine.

The other thing is- I had colonscopy, endoscopy, CT scans, MRIs, sonograms, and all kinds of blood work and everything was always normal- yet I kept getting sicker. It wasn't until I had specific motility testing of my small bowel and colon that they were able to diagnose the dysmotility.

So you may be in for a lot of testing. The first tests are important to rule things out- but don't get discouraged if everything keeps coming back normal. If that happens- push for a motility workup.

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Thanks for both of your posts! choco130, I am curious about the treatments you are receiving from your Eastern med doctor--are they dietary, or supplement, or something completely different? Good to hear you are feeling better.

WendyRB, we don't live in an area where there is a motility specialist, though, we are close enough to a larger metro area where we could see one, if we have to. The gastro ped she sees is very good, but we are limited in our choices. After a month and half on the reglan, she does have side effects, dizzy and headaches, but for now, it is better than the alternative. I am hope that the endoscopy tomorrow shows something, but if not, we may have to seek a motility specialist--our doctor said that the post viral gastroparesis should have gotten better by now, if that is what it is. I don't know what treatment you give for that other than the reglan and dietary changes?

Thanks for your thoughts and prayers!

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I am worried about the endoscopy, though I know many small children and babies have them. I am sure all will be fine. Your daughter had an allergy as a baby? My daughter had bloody stool and stomach problems as an infant, we never had these studies done, but I eliminated dairy, soy, nuts and eggs (and wheat!) from my diet as I was breastfeeding. That seemed to make her better. She can tolerate some dairy, but still drinks soy milk. I am wondering if this has been brought on by an allergy.

The gastric emptying test she had last week (with the egg) showed that she had delayed emptying, even with the reglan. . . . so, if they don't find anything with the endoscopy, what types of things do they look for in the small bowel and colon? Thanks again!

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I am so sorry! I have 6 and 3 year old girls. I freak out when they get bruises and scrapes. This has to be so frightening. I hope so much you all can get through this quickly.

Endoscopy...it's not THAT big of a deal. The most dangerous part is probably the anesthesia. Otherwise it's a quick and simple procedure. I was kind of drugged the rest of the day when I had mine, but otherwise I would not have known anyone had done anything to me, much less stuck a camera down my throat and into my stomach. They didn't go past my stomach, though, so it might feel different if they go farther than that.

Anyway, I have GP most likely caused by a flu I got back in January. It wasn't even a stomach bug. It was classic respiratory influenza. I was in bed for 2 weeks just more ill than I had ever ever ever been, and I had H1N1 the year before--this flu was worse than that. I just didn't have much of an appetite during the illness and when I started eating normal amounts again I found that I was getting indigestion from it. That quickly escalated from indigestion to nausea and cramping and just inability to eat anything. So while this REALLY sucks, I do find hope in the fact that many people with post-viral GP do recover eventually.

Not to scare you, but if this were my child I would be very concerned about her taking Reglan. I have seen 2 Gastroenterologists and neither of them will prescribe Reglan because it has horrible side-effects. Your daughter might be fine on it and if it helps her that is great, but at least become informed of the side-effects so that if she starts getting weird you will know it's the Reglan causing the problems.

This community is wonderful and you should be able to get answers from people who are going through this, too. I love this place. We all come here for info and support and sometimes to just vent. It really helps.

Catherine

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I WOULD BE CONCERNED ABOUT THE REGLAN TOO. IT IS A GREAT MED WHEN IT COMES TO NAUSEA AND VOMITTING, BUT IT'S SIDE EFFECTS ARE NASTY.
I HAVE IT IN 5 MG -- BUT IT IS AN ABSOLUTE LAST RESORT (IF I HAVE TO USE I'M SUPPOSED TO CALL THE DOC. BUT I AM ALSO STUBBORN AND WILL NOT GO TO ER UNLESS UNCONCIOUS AND AFTER BEING IN THE HOSPITAL FOR ABOUT 9 MONTHS --NOT ALL AT ONCE I HATE HOSPITALS, SO IF I EVER HAVE TO TAKE TWO I WILL CALL.

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thank you ... i'm so thankful that i found a treatment that works for me. before i get into that, i want to agree with catherine that reglan is a very dangerous drug. yes, it helps with motility, but at great risk. i couldn't take it (thankfully) because i had a panic attack but many who have taken it for treatment, ended up with involuntary twitches and other muscle movements. another side effect is heart related. actually, there are hosts of dangerous side effects and i really do not know why it's still legal ... and i don't know why the drs prescribe them fully knowing the dangerous side effects. you should speak with your child's dr about other methods. ask him straight out what you should expect from taking reglan. you can just google reglan and you'll get a lot of info. sorry, i don't mean to startle you ...i have a 9 year old daughter so i completely understand that you want to make her more comfortable but the risk is too great.

ok ... about the eastern medicine ... i was really sick for close to 8 years after i had my gallbladder removed. drs couldn't figure it out until i was finally diagnosed with GP earlier this year. by then, my health was going downhill really fast. i was not able to get off my couch because of pain and fatigue. finally, i went to an eastern medicine dr. she told me that because i wasn't treated properly when it first started, my body was completely depleted from energy, and my organs were beginning to fail. it was scary ... and i knew she was telling me the truth bc i felt it happening. i'm taking herbal tonic, specifically designed for me (that's how most eastern medicine works ... there aren't too many one size fits all meds) ... it's mix of herbs that she brew and packaged ... each month, i get a batch. i see her once a week. she's great bc she explains and explains until i get it ... she calms my fears by making me understand. (something that's very hard to find in most drs) she checks my progress when i see her, gives me additional herbs (usually in a powder form) to take for immediate relief. tonic is something i take to cure the root of the problem so it's going to take a while. she changes the formula each month as needed.
i want to warn you that there are a lot of bad doctors (quacks) who practice eastern medicine, so it's essential that you get a referral from someone you trust.

for me, this was the path i needed to take ... i've read about others who've been cured from GP that took western medicine method of treatment. the most important thing is you have to start to treat it correctly asap. if too much damage is done, it's that much harder ...
western and eastern philosophy is so different that it'll take me pages to explain ... i just hope that you'll find a good dr who will get to the bottom of this and start treating her the best way possible.

if you have any questions, you can always ask ... good luck.

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thanks all, yes, we are very concerned about the Reglan--I know the drug well, and the side effects it can have, I actually had to take that drug years ago, and I had bad side effects. At this point, we have no choice, even a missed dose causes intense pain for her, and eventually the inability to even take drops of fluid. It seems the lesser evil than going to the hospital with IV and pain killer--that actually didn't work either . .. Her gastro hopes to get her off ASAP.

So weird if this is was caused by a virus, I've heard that it is usually following a long and hard flu, or viral illness, she literally had a 24 hour bug, with very little vomiting--I guess it does depend on the actual infection and what it actually is.

Choco130--I agree, we must be careful when getting referrals to such doctors (or any!) I am so glad to hear you are feeling better!! I am going to post after the endoscopy --- I hope to get some answers . . .

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I take domperidone instead of reglan and have literally no side effects other than a little lightheadedness for the first week or two. It is not FDA approved, but many of us here take it (and most of us tried Reglan first and hated it and couldn't tolerate it). You might ask about it- it is over the counter in England, but not FDA approved here. You can get it from compounding pharmacies, from Canada with a prescription, and from inhousepharmacy.biz without. I don't know about giving it to children, though, but it is worth asking about.

You might try cutting back on the soy for a week or so and see if that helps. I know she probably needs the protein but a week or so without it won't really hurt her.

My daughter was the first documented case of an allergen passing through the breastmilk. She saw a pediatric gastroenterologist at Children's Hospital in Oakland who wrote the case up for some journal of pediatric gastroenterlogy. People had suspected it but she was the first confirmed case of it. She's fine today, by the way, did not go on to develop the severe anaphylactic reactions to nuts/peanuts that some people have. We kept her off of nuts and peanuts until she was grown (she is now 23).

The other things you might think about are Cyclic Vomiting Syndrome (there is an excellent website about this: http://www.cvsaonline.org/resource.html . Lots of good information, a forum where you can ask questions, etc.

You might also ask about autonomic dysfunction too.

Good luck, please keep us posted and let us know how she's doing!

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I can't imagine a little child suffering with GP. It breaks my heart!
Keep talking to your doctors and try to find a specialist. Keep encouraging her that she can get better. Don't let her lose hope.
Tell her people like me are praying for her. And for you as well :)

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I'm so sorry for you. It's hard as a parent to watch them go through this. My 16 year old son has been dealing with what we have now found out is, post viral gastroparesis. He was sick with stomach flu last August and that is what the drs blame it on. As of the middle of June, it has reversed itself and he is off all medications (took Reglan for 4 months before it quit working and Zofran-still as needed on that one but hasn't taken it lately)! He is finally eating pretty much whatever he did in the past and feeling ok most of the time. He had been on liquids pretty much 4 or 5 days out of 7 in the week for the past 6 months. Our problem was the weight loss and nutrition. He didn't vomit very often, but anything he swallowed caused pain and major nausea. Ensure, gatorade, carnation breakfast and soup kept him going when he could tolerate it. The motility specialist we worked with, told us in April after his testing, that it was returning. The original GI dr had said it could reverse in 2 or 3 years if it was caused by a virus. I just wanted you to know that it really can happen that way and did in his case!! You are in my prayers!

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Oh it sounds like what happened to me. My doc tested me for all kinds of possible causes for the gastroparesis, but I didn't have any of them. So he concluded that it probably came about "post-viral". And I actually did have a bad virus, so that's probably what happened. It's a crappy explanation, though, becuase there is nothing to do to remove the cause. The only thing to do really is to deal with the symptoms and adjust her diet accordingly. Most of us have better days and worse days, or better weeks and worse weeks. My gastroenterologist told me that this disorder can get better on it's own, and can even go away. I have yet to see that happen, though - but it's good to know that's a possibility.

Please be careful with the Reglan. Dompeirdone is a safer alternative that worked well for me. I hope you get the answers you need soon - it takes a while to figure out what will work for each specific person.

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Thanks all!! It means so much to me to read about everyone's experience, and not that I WANT people to be going through this, but we were feeling so alone . . . . Yes, "post viral" gastroparesis is a difficult diagnosis to hear--on one hand, you hope it clears up on its own and goes away, but how long will it take? Will you always be worried it will come back? Oh, and WendyRB, thanks for link to cyclic vomiting, our doctor mentioned this as a possibility too---though, now that he has confirmed delayed gastric emptying, I wonder if that is still on the table?

My daughter had her endoscopy yesterday, and is doing well. Everything looked good, but dr. said that more often than not, things show up on a biopsy, that are not seen by they eye. I feel like he will diagonose this a post viral gastroparesis if the biopsies look good--I am worried about keeping little girl on the Reglan, but I don't think that there is an alternative available in the US? We are keeping a food diary too . . .

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Hello! I want to post an update -- results are back from my daughter's endoscopy and she has been diagnosed with Eosinphilic gastritus and Eosinphilic esophagitus. We have an appointment with the allergist in two weeks. After she sees the allergist, and we can figure out what her allergies are, she will need to begin a steroid treatment. Her gastroparesis is a symptom of the EoG disease. Many thanks for all of your support and suggestions!!

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hi ... i'm glad you got a clear diagnosis, although i'm sorry that your daughter is sick. i want to mention that if you run out of options with the western medicine, please check out eastern medicine. with something like what she's been diagnosed with, one can definitely be cured. like i said, you just need a right doctor. and i asked my doctor about little kids with gi issues and she said that it's much easier to treat when they're young. i don't want to push you into anything but i wanted you to know that there's an option out there. best wishes with the treatment ... i hope she feels better soon.

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thanks--it is nice to have a clear diagnosis---I don't think you are pushing! I have had several people suggest looking at alternatives, to include eastern medicine. Actually, I am going to start researching this option now, as we have a long road ahead and I am open to anything that will help my daughter.

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if you decide to try ... my dr also travels to that area every couple of months. she has patients all over the place. if you're interested, I'll let you know the next time she goes out there. to diagnose someone, altis he does is feel your pulse on your wrist ... that's it! so your daughter won't have to endure any tests ... and amazingly enough, she and all the good drs can tell everything from that ... and if you decide to go with the treatment, it's usually a herbal tonic specifically formulated for each patient.
I have a 9 years old daughter so I can kind of imagine how you must feel, which is why I wish I can be of any help. it really breaks my heart when a child is in pain ... hang in there ... I'll be praying for both you and your daughter.

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My gastroparesis seems to be caused by something called Arucrate Ligament Syndrome, which is the strangling of the major artery (celiac ) leading to the stomach (blood supply) by an out-of-place ligament. Not only is the artery cut off, but a bungle of nerves which help control stomach function is also caught up in the tangle.

It is inoperable.

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My GP would not put me on Reglan because it is "blackboxed" now. However, when I had to go to the hospital, the ER doctor insisted that I go on it, he said " my doctor was too cautious, that he prescribes it like water". Well, I didn't let them give it to me and then I got a miracle ... it seems that Gastro centers can prescribe Domperidone and in our city, 3 of the drugstores in town can make it. So, one week ago, I started on it, and yesterday, I had the best day in months.

Maybe you can ask in the hospital where the nearest place to get it prescribed in your area is, and have them try it instead. Apparently, they can prescribe it in large medical centers.

I can't believe how much better I feel. Not my old normal ... (but, I can live with this new normal). I am also new to this site and it has already given me much hope and support. For months, my main thought was "I don't know what to do". God bless your daughter with complete health restoration and strength for you and the family.

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