Gastroparesis: Always Feeling Like You Just Ate Thanksgiving Dinner
In my post a few weeks ago about The Littlest Apple’s picky eating, I mentioned that he has something called delayed gastric emptying. The medical term for this condition is gastroparesis. The most common cause for gastroparesis is diabetes, but many people also have idiopathic gastroparesis, meaning the cause is unknown. We don’t know what caused The Littlest Apple’s gastroparesis. Gastroparesis is a chronic condition caused by damage to the vagus nerve that controls the movement of food. (Blah, blah, medical jargon…stay with me, folks!) As a result of the nerve damage, the stomach empties reeeeeeeeeally slowly, meaning that someone with this condition almost always feels full. As The Littlest Apple’s dietician said on our recent visit, “He’s walking around all the time feeling like he just ate Thanksgiving dinner.”
Dealing with The Littlest Apple’s gastroparesis is our biggest battle right now (and that is saying something, given that we’re in the midst of the “terrible twos”). It is an all day, every day kind of battle. His pickiness doesn’t help, but even when we offer his favorite foods, he rarely takes more than a few bites because he always feels full. He just isn’t hungry. And he REALLY needs to eat, because he’s currently not getting enough calories. There also seems to be absolutely no predicting the times when he actually IS hungry, so we’re just offering up food as much as we can throughout the day. It is very reminiscent of the frequent and all-consuming feedings of a (very opinionated) newborn, with perhaps a little less screaming (I’m thankful for that, at least!). Our schedule still revolves around feeding opportunities, and that can be very exhausting at times.
There are only a few treatment options for gastroparesis, and these treatments only offer some relief (no magic cures), if they work at all. There are a few more experimental options available to adults (botox injections, gastric pacemakers, etc), but most of those remain untested on children, especially toddlers. There is very little information available out there about gastroparesis in children, and that’s one reason I’m discussing our situation here. I approach problems in life by learning everything I possibly can on the subject, and in this case, the available information is seriously lacking.
We’ve already tried several of the medicines that make the stomach empty faster with no luck, including the dreaded Reglan (with its new black box warning from the FDA…yikes!). We’ve tried appetite stimulants too, with no improvements.
Another recommendation for gastroparesis patients is to change their diet. Changes to diet are tricky for The Littlest Apple, because the advised diet for gastroparesis (avoid high fat foods) is the exact OPPOSITE of the recommended diet for a child diagnosed as Failure to Thrive (feed him all the butter and ice cream in the land!). Because of The Littlest Apple’s small size, our feeding team is focusing more on the high fat, high calorie diet, and trying to treat the gastroparesis with medicine.
We had our checkup with the Feeding Team last week, and The Littlest Apple only gained 2 ounces since his last visit earlier this year. That came as no surprise to us since we’ve been weighing him at home on a weekly basis. Needless to say, the team is concerned (again) about the lack of weight gain. They seem to be running out of other things to try and are discussing feeding tube options once more. It’s never a good thing when you’ve stumped the feeding team at the hospital with the #4 Digestive Disorders Clinic in the nation. That’s how tricky gastroparesis can be. What works in one case might not work for everyone, and clearly, what we’re doing isn’t working….yet.
We’re giving a couple of the medicines a second try. I’m not inclined to think they will work this time since they didn’t before, but the last couple of days The Littlest Apple has been drinking more of his Boost 1.5 (high calorie nutritional supplement) than normal. It still isn’t as much as he needs to drink, but we’re hoping this is a trend in the right direction! If the medicine doesn’t help (or if it doesn’t help enough), then The Littlest Apple will be getting a feeding tube. More specifically, he will be getting a jejunostomy, which bypasses the stomach completely and goes directly to the small intestine, so as to avoid the stomach emptying issues that got us here in the first place. Drastic yes, but nothing else is working. People tend to get really freaked out when I tell them about the possibility of a feeding tube…because this is a very active, otherwise healthy and developmentally on track, intelligent little boy, and most people have the impression that feeding tubes are for “really sick kids.” I know that used to be my thinking, too. The Picky Apple and I are coming to terms with the feeding tube, and in some ways, it might come as a welcome relief to our constant stress about whether The Littlest Apple is getting enough calories, but we’re still hoping it doesn’t come to that.
Our next checkup is in mid-January…that’s our “deadline” to see if the current medicine is working. Until then, I’ll be reporting in with the feeding team via email with weight checks and food journals. We’re pulling out all the stops and trying anything and everything we can to get some weight on this little boy of ours, including feeding him lots and lots of butter. I’m not just talking about butter on and in things. Been there, done that. Doing that. I’m talking straight up butter sliced by the tablespoon (dietician is all for this, by the way!). Oddly enough, The Littlest Apple loves eating butter straight up, and would be elated if I would just hand him the whole stick to gnaw on (eww!). Not that he would take more than a few bites. Loves the butter, but needs to eat more!
![Butter Eater[1]](https://www.thepickyapple.com/blog/wp-content/uploads/2009/11/Butter-Eater1.jpg "Butter Eater[1]")
I just wanted to share a little more about gastroparesis and give an update on The Littlest Apple for those family members and friends (and other parents out there) who might be interested! If you or anyone you know has gastroparesis (adult or child) I’d love to hear from you.
Trackbacks & Pingbacks
- Good Reads: Making Children Mind Without Losing Yours, by Kevin Leman | The Picky Apple
- Painting Our Master Bedroom | The Picky Apple
- Update on The Littlest Apple: GI Checkup | The Picky Apple
- GI Update: Running Out of Ideas. And Patience. | The Picky Apple
- Feeding Tube Awareness Week: Our Story | The Picky Apple
My husband has gastroparesis, and as hard as that is, I can’t even imagine being 2 and having it. My sympathies are definitely with you! His doctor talked him out of the gastric stimulator surgery as he hasn’t seen much success with it. So we are stuck with using medication exclusively to deal with the problem.
Wow, Cara! I am sorry your little guy is having to go through this. I know it is hard on you and your husband, as well. It sounds like you are taking the right approach, however. You have educated yourselves and are staying positive. I will keep your family in my thoughts and prayers.
Hey Cara. I found your blog through a comment you left on my friend Shawnie’s blog. My 4-year old son also has feeding difficulties. He hasn’t been diagnosed with gastroparesis, (just unexplained failure to thrive and dysphagia which means problems chewing and swallowing.) So I can defintely relate to the stress of trying to get a little one to eat/gain weight. All I can say is hang in there. At least in my limited experience, it DOES get easier, or at least not quite as scary as they get older. You don’t worry quite so much that they are going to be permanently damaged because they aren’t getting enough calories to support brain development (I actually had a pediatrician tell me that–she said that the reason he wasn’t saying any words by 18 months was because his brain was starving.) We found a new pediatrician, he learned to talk, and he keeps getting taller even though he’s still not on the charts for weight. These problems don’t exactly go away, but it’s a lot less scary now than it was when he was 2.
I just can’t imagine how hard this must be for all of you. Hang in there!
Thanks everyone for your kind words and encouragement! We’re really hoping that we see some major improvements in the next few months, but we’ll do whatever needs to be done to help The Littlest Apple to be NOT so little anymore! 🙂
Thank you for sharing your story, Cara. My 2 and a half year old grandson has been having problems and the GI is going to schedule him for a stomach-emptying test in the near future. He has a congenial brain malformation called Dandy-Walker complex and this may be the cause of his “possible” gastroparesis. I appreciate the Reglan warning—I will avoid that one. Our little grandson is on an organic nutritional supplement called PediaSmart, which he loves, but has only 237 calories per 8-oz serving. He can only take up to 4 oz at a time and often throws it up undigested after half hour. He is in the 15th percentile for weight…we fight for every calorie. Added to his issues are his tactile defensiveness in regards to his face and especially his mouth. He does NOT like to be touched on his face, but he’s getting a little better with therapy. I’ll be watching LITTLEST APPLE’s progress…thanks again.
Jeanne
I have gastroparesis, and as an adult, I can tell you it is HARD. So for a child – I feel so bad for little apple. I love your analogy to feeling like you just finished a HUGE Thanksgiving dinner. I will add on to that by saying, “And the turkey was a bit bad,” because the nausea that goes with GP is always there in the background. Full and sick to your stomach. It is like having a stomach flu all the time, or morning sickness. But I have got to give you a HUGE pat on the back for being such an AMAZING mother. You know everything there is to know about GP – you have done your research in a BIG way. He is LUCKY to have YOU as a mom. Hang in there. You are doing GREAT!!!
My son is 18 months old and we’ve been struggling with a) getting gastroparesis diagnosed and b) learning how to live with it for about 6 months now. My son is in the 10th percentile for his weight for his age. My question for you is: How long does it take to go away? The doctor has indicated that he will, someday, outgrow it, and we’ve been given vague time lines of 6 months (we’re at 6 months now) to a year (another 6 months of this…?). I would love to hear from someone else who is managing to get through this. I’m trying so hard to be positive, but it’s awful.
Meghan- I sent you a longer response via email, but I just wanted to answer your questions here for others who might be interested.
I am so sorry to hear that your son is suffering from gastroparesis (GP) too! It is SO frustrating to deal with, isn’t it?! I feel like I’m constantly worrying about how much my son is eating…our lives seem to revolve around food, or the lack thereof.
How long does it take gastroparesis to go away?
Well, that’s the million dollar question. No one really seems to know. Most adults with GP have it for the rest of their lives. In children, the answer is a little trickier. Children who develop GP after a virus (like the flu) often recover, with varying timelines. The Littlest Apple has had GP since birth or developed it in the first 6 months of life (though not after a virus), and we’re not really sure if he will outgrow it or not.
As I’ve said before, there is no “cure,” but there are various treatment options (more available for adults than kids) that have varying degrees of success. We’re still struggling to find something that works at all for The Littlest Apple.
He’s got an appointment with a pediatric gastric motility specialist on March 30, so I’ll definitely share an update next week. We’re hoping he has some new information to share.
Update on Kirk:
Since my post above, alot has happened. In order to get more calories into Kirk, we switched to the Boost 1.5 like the Littlest Apple. Kirk threw it up sometimes, but other times he kept it down. We found at the time that he kept it down better if we mixed it half-and-half with regular Boost, or Pediasure. We tried adding Benecalorie, but it is more meant to mix with a spoon-fed food like applesauce or mashed potatoes. It didn’t mix with the formula at all. Still, we had throwing up.
At he subsequent visit to the gastroenterologist, we were told he could go on Reglan (which I refused) and then erythromyicin. We tried that for a month…no effect. So, last month we returned and the gastroenterologist decided to try something completely different. Although Kirk had been tested for a specific milk protein allergy— he hadn’t been tested for all of the milk protein varieties. So, we took Kirk off of milk and put him onto soy. Dr. had said to just give him Silk and we did, and he would drink 4 ounces and then an hour later, he’d ask for a bottle and he’d drink another 4 oz. Now, he never could do that before—without throwing up. But he didn’t throw up. He just kept drinking record amounts…so the 2nd day, I got some Similac Isomil (infant soy formula) and mixed it with the Silk—that held him between bottles a bit longer. Then, I found Bright Beginnings Soy formula, which is like Pediasure and Boost—but has no milk in it. BINGO. It is still a bit too heavy for Kirk (he’s not throwing it up, but he doesn’t seem to be as hydrated ie: not wetting his diapers enough), so we started to mix it with some fortified “regular” soy milk (vanilla flavored—Pearl, by Kikkoman– it’s organic). NO MORE THROWING UP. It’s amazing. To add more calories, we have just started using Duocal powder and Kirk tolerates that as it mixes (dissolves) well with the formula.
So, it would SEEM, if recent history is an indicator, that his stomach was emptying slowly because of a milk-protein allergy. We’re not going to to through allergy testing to identify the specific protein because it’s a painful process and we don’t want to put Kirk through that. For now, he’s doing better and hopefully with the DuoCal, he will put on some weight. At our last check, he was down to the 9th percentile. Will keep you updated!
Jeanne (Nana to Kirk, 33 months and the love of my life)
Cara,
Thank you thank you for posting what you are going through! We have a 2 year old daughter who has been recently diagnosed with Gastroparesis. We have been dealing with her failure to thrive issues since she was teeny tiny. (not that she is much bigger now. lol) She has milk and egg allergies which has made it a challenge from the get go to get enough calories in her in the first place. I have been looking and looking to find someone who has a child with GP, so to find your site is a breath of fresh air to me!
Lilly isn’t even on the growth curve for her wt. anymore. The chances of having to get a J-tube seem to be more and more of a reality as we finally know what is going on with her. She is extremely picky as well which doesn’t help. At the same time, I can’t imagine what she must be feeling like all the time. Her little belly is constantly distended. She wants to eat what she sees her sisters eating and gets frustrated now that she can’t have a lot of that stuff anymore. (Lilly is the youngest of our 4 girls)
We are going to see if the doctor can check her for diabetes since from what I have read causes a lot of the GP cases in kids.
She has been on Prevacid for about a year, but we decided to take her off of that due to the side effects with the bones getting soft. Instead, we have taken her to a homeopathic doctor to see if she can give her more natural suppliments that will get her body and G.I. system back on track. That in itself has been a challenge because she doesn’t like the taste of the suppliments. The only way she will take them is in her Vital Jr. which is a formula that is non dairy and supposed to be for kids with malabsorption issues. The problem we are facing with this though is that the formula is FULL of sugar which isn’t good either. AAAHHH!
So, it is a balancing act of getting her at least SOME calories and trying to make sure she is getting the vitamins and minerals she needs, but then never knowing when she will actually feel up to eating anything significant.
It is just nice to have finally found a site where I can see first hand what someone else is going through and feel like we aren’t alone in this.
~Andrea~
Andrea- I’m so glad you took the time to comment on this post! Lilly sounds like she’s going through a lot of the same stuff as my son: teeny tiny from the get-go, FTT, threats of a feeding tube, milk and egg allergies, super picky, and worrying about formula full of sugar. It is all sounding SO familiar! I hope you’re able to find a formula that helps her to gain weight without going the tube route, but if you do wind up going down that path, I will say that it is nice to have that “safety net” of calories in place…takes the stress out of the situation a little. Not that I would wish that on anyone, though. Hope you’ll keep in touch!
Cara,
Thanks so much for writing back. I feel as though a weight has been lifted in just being able to see what you are going through. We are going to be getting some labs drawn soon to see if it is related to Diabetes. My prayer is that it isn’t, because that would just add a whole other aspect to this that I am not sure I am ready for. In my heart, I don’t think it is since she doesn’t seem to have any of the typical symptoms of Diabetes. More than likely it is idiopathic as well.
We finally have an apt. with the G.I. doctor to have a family meeting since the diagnosis. I have been talking to the nurses all along which has made me very frustrated. I really would have expected the doctor to have called us at least by now. But…we are moving on and finally have that set up. I am hoping and praying that she will be on board with our efforts to try a more homeopathic route as well. Lilly does seem to be doing better since being on the digestive enzymes and other vitamins and minerals the homeopathic doctor has her on.
Do you have any recipes that seem to work for the littlest apple? I am finding it so hard to know what to make for Lilly that will actually have decent calories. These 6 small meals a day has been a challenge too since there are three other kiddos who are busy and I am working full time to keep the insurance. Any advice or direction would be great!
I admire how you are advocating for your son, Cara, and are open to whatever options might be of help to him… medication, feeding tubes, etc. Since this condition is os individual, sometimes trying different things may allow you to stumble on a solution for your little apple.
Our daughter is 12, developed gastroparesis affecting her esophagus and stomach a week after a flu. We seem to have the vomitting under control right now w/meds. (erythromycin, tums, prilosec and miralax to counteract constapation). However, she cannot eat more than very small amounts of food, feels satiated quickly. At this age, so hard psychologically because socially everything they do w/friends is around eating.
Doctor initially said 2-3 months recovery, but we have long passed that. As parents, we recognize that this could be a long haul, but are very interested in anyone w/a pre-teen son or daughter who is managing this condition.
Thanks so much and best of luck to all of you!!!
Hi Cara,
I just wanted to drop a line to see if you would have time to email me personally. I have a lot of questions with what is going on with Lilly and we are now at the point where they are referring us to a motility clinic. If you have the time I would love to talk to you. My email is apgaines@cox.net. Thanks so much.
Daisy- I can only imagine how hard it must be to be dealing with GP at 12 or 13. That’s a hard enough age on it’s own, and food is such a “social” thing. I haven’t run across too many teens and preteens with GP….mainly adults (and one or two children). Since it seems your daughter has viral GP, I’m hopeful that she’ll still grow out of it! Best of luck to you and your family!
Andrea- I sent you an email today! I’d be happy to answer all of your questions.
I know this comment comes almost a year after the original post, but my 2 year old son has just been diagnosed with gastroparesis. He also has reflux, which we have known about for 2 months. The reflux meds don’t seem to be working much and now he is on erythromycin for the gastroparesis. So far there has been no improvement. We are fortunate that he does drink the supplements (pediasure, boost, ensure plus, etc). So 99% of his nutrition comes from the supplements. We are really quite concerned about him and scared about his long term health. Thanks so much for this very honest blog. I hope your son is doing better.
Janice,
Oh how my heart goes out to you and your son! My son was diagnosed with gastroparesis when he was about 18 months old, and honestly, it took a while for it to really sink in. Not sure if you’ve had time to read many more posts on my blog, but my son had surgery last week for a g-tube (after several months with an NG tube). We used erythromycin for a long time with no real results and are now using domperidone with minimal results. Going the feeding tube route is certainly not ideal, but it has been like a weight off of my shoulders knowing that my little guy is finally getting the calories he needs. (We avoided the feeding tube for about a year before going forward with it earlier this summer.) We are definitely relying primarily on those high calorie formulas right now, even though my son can eat orally during the day. Please don’t hesitate to email me with any questions you have.
Cara, I found your blog when researching gastroparesis for my 2yr old. She was diagnosed just a few months ago, however she has been batteling with reflux since infantcy. She has been on multiple meds for her reflux and then when we had the gastric empting test they placed her on errythromycin. This med is not working either, I am not trying to kill your hope but I am in the same boat. The one thing that we did do prior to finding that she had gastroparesis is we started her on carnation instant breakfast mixed in whole milk, it tastes better than the other premade protient high calorie drinks and it is complete nutrition when mixed with whole milk. My daughter likes it and she has been able to gain weight on this, she does not eat well at all so we supplement her with three packs of the carnation a day and she is thriving. I know there is not really a cure for the gastropareis but giving her an all liquid diet has helped her symptoms and to thrive. I don’t know what all you have tried but if your son will drink it, it is definately worth the try. Thank you for keeping this blog and letting me know that I am not the only one going through this with a 2 year old specifically.
Hi Cara, I just found out today that my 3yr old son Alex has delayed gastric emptying. We have been strugling with his weight gain since he was born! He has had tons of different tests done since he was an infant and they couldnt find anything wrong. He never had any symptoms, just not gaining weight and extremly picky!! At 3 and 1/2 he is just 26lbs. So i know how it is strugling with getting enough calories in everyday. He also drinks boost but i cant get him to drink more than 1 a day. Were gonna start erthromycin tomorrow i hope it works!! good luck!
What a strong little guy! I have GP, and it has been a very hard struggle for me in my 20s, I can’t imagine how your little one can manage. Children are a true symbol of strength 🙂
I feel like I have been reading about my life as I read this blog and all of the posts! My son, currently 21 months, has had eating issues since he was born. They got worse around 4-5 months as I began weaning him to formula (I was going back to work). We have been through tons of testing, medicines, eating “tricks”, feeding therapy, etc. etc! He was diagnosed with GERD at 6 months, GP at 15 months, food allergies (milk, egg, and soy) at 18 months, and we finally got the failure to thrive label (I was happy) at 20 months!
I have been dragging my feet with the Reglan and today we talked about possible appitite stimulants, but if he is full, why put more food in there? We focus on calorically dense foods-I puree everything to get more volume in there and make it easier for his tummy to break down. I am still nursing twice a day (out of fear). He typically only drinks 6-8oz of liquid per day. He is on Nutramagin AA, which we concentrate and add Duocal.
I totally agree with you Cara, our days revolve around offering food, watching his intake, hopeing he will be hungry, counting wet diapers, and checking the consistancy of the “dirty” ones. It is exhausting!
We have had a few good weeks now that I am pureeing his food. It does bother me that they are encouraging foods that are fatty and tend to have a lot of sugar. I am trying to balance that with what I would prefer.
It has been such a relief to read this and know that I am not alone!! Hang in there 🙂
I am so glad I found this website. My 2 year old son has been labeled failure to thrive for over a year now- he weighs 21 pounds. Besides having allergies to milk and eggs, he is a typical 2 year old.
We just got the gastroparesis diagnosis today. And now we have so many questions for our doctor- we just received the diagnosis over the phone. She is recommending the upper endoscopy with dilation and botox. I am having a hard time finding much information about this procedure except that it is experimental.
I just wanted to thank you for this website!
Any suggestions for talking with the doctors, would be appreciated.
Debbie,
I am so sorry to hear that you’ve been struggling with this too! Having a life that revolves around trying to get your child to eat can be so exhausting. I hope that you can find some combination of medicines that works. Have you tried Domperidone? That’s what The Littlest Apple is on now. It’s not a miracle drug by any means, but it may have helped his stomach empty just a teeny bit faster….
Dealing with GP in addition to food allergies is such an obstacle! As you know, we did that for a while too. Thankfully The Littlest Apple outgrew his allergies which opened up lots of new high calorie food options for us. I hope your little one will outgrow the food allergies as well (at the very least!).
If you read some of my more recent posts, you’ll see that The Littlest Apple is now fed via g-tube. (I’ll be posting an update soon…) As hard as that decision was to make, it was the right one for us, and the tube feeds have been SUCH a blessing! The Littlest Apple is now gaining weight (slowly!), and we don’t feel quite as much pressure at meal times.
Please don’t hesitate to email me with any questions or concerns you may have! I’m not expert, but I am a mom who’s been there, done that. Take care!
Julie,
Your little one sounds so much like The Littlest Apple with his failure to thrive diagnosis, food allergies and GP. I’m so sorry that you’re now dealing with a GP diagnosis as well. Since there are still so many unknowns about gastroparesis in children, sometimes you have more questions than answers!
When The Littlest Apple had his endoscopy, he had the dilation done as well, but no Botox. Our GI has mentioned Botox as a more experimental option that is available to us, but we haven’t gone down that road yet. From what I’ve read about it, Botox is used more and more in adults with GP, bit it is still fairly uncommon in children (particularly the super young ones, like ours!). I would certainly ask the doctors about it (side effects, use in kids, how many times they’ve tried it, etc). I’m very curious to see how it works, so please stay in touch! And don’t hesitate to email me with any questions or if you just need to chat with another mom who’s familiar with gastroparesis. Best of luck!
I am so glad to have found this blog. I have been feeling so alone with this. My daughter is 23 months old and we have been dealing with a sever case of Gastroparesis. She was officially diagnosed in October after a gastric emptying test confirmed it… but we believe that she has had this either since birth, or since a very young age as she has had food and tummy troubles since she was a tiny baby. She also had FTT issues at birth. This poor baby cant keep anything down. We have tried several different meds, Reglan was the WORST, on erythromycin and prevacid now. (along with zofran for vomiting) I am hoping this gets better, I worry about the quality of life she will have. My prayers are with all of you and your little ones! This condition is just horrible.
I am curious to hear about people’s experiences on reglan and erthromycin or having dilation done. Our doctor has given us those 3 options for our 2 year old and we are trying to make a decision. It is very hard to know what is right.
I would love to talk to you about this if you have time. Please email me: wehdostables@aol.com.
I’m always willing to answer questions! Just send me an email and I’ll try to get back to you as soon as possible.
Hi my daughter had gastoparesis 3 yrs ago when she was 9. At first it came on as a virus but never went away. She ended up taking domperidome (available in Canada). Her she was very nauseas and she missed alot of school, especially in the mornings. She finally got better, it took monthssssssssssssss. She was great for 2 yrs and this gastroparesis came back this july. We are all really upset.  I took her to a naturopath last week who has experience with gastroparesis. He has her on a 2 week strict diet. Gluten, wheat free, no red meat, no dairy or raw fruits and vegetables. It’s been tough. He also gave us homeopathic medicines as well. I dont see any improvement yet but we’re committed to give it 2 weeks. My daughter has a history of taking alot of antibiotics as a baby and I feel this could be a fungal condition.  If you have time go to www,knowthecause.com to learn about the relationship with fungus(what we eat) and many health conditions.
Lisa Toronto
HI, my daughter has had gastroparesis since birth, and it’s a constant struggle. She’s almost a year old now, and appears to me to be getting thinner and thinner, and I feel so helpless. She also has GERD, and it’s a struggle to figure out what foods she’ll eat. I dread every feeding and every doctor’s appointment. The GI doctor only wants to scope her, which I’m refusing at this time. I don’t know whether or not to try e-mycin, as she’s so sensitive to antibiotics (which I found out after her 5th ear infection this year). I’m so scared for her and am terrified of feeding tubes.
I just took my son to the er today because he is getting sick at least once a day and they said he has gastroparesis. i was googling it and found your page. and i read your page and it gave me alot of questions to ask the doctor when i get my son in to see her. my son is 2 and hardly eats and they say that is normal but since he had a problem going to the bathroom last month he has started to get sick at least once a day. when he was a baby i had to change his formula because after every feeding he would get sick and they blamed it on the formula but he still got sick but not as much. the er doctor told me today that its something he will grow out of by 6 or 7 years old and he doesnt want to put him one the med for it because of his age and it having so many side effects. Diabetes runs in both sides of his family both mine and his fathers so now im rather scared.
Hi, your not alone. Make sure your son has tests done as his symptoms can be many things. Constaption can cause fullness, nausea, and loss of appetite.  The meds for gastroparesis aren’t very good so don’t feel bad that he isn’t taking anything. Sounds like he has reflux as well, my guess he will grow out of it
Let the doctors scope her if they haven’t already. My daughter didn;t get scoped 3 yrs ago. She was told she had gastropareseis. It went away and she was great for 2 yrs and it came back in July. She has been scoped and they found 2 small ulcers and gastrits. She takes meds but they don’t seem to help much. Her gastroparesis is mild according to the doctors but she is full all the time and day to day life for her is tough, She can’t make school full time yet. We’re hoping this nightmare goes away soon
I can’t thank you enough for your blog. My son 3 has been batteling gastroparesis since birth. We just got diagnosed in July. Finally we have answers after we tried every formula and bottle in the book. We’ve been on eryped ever since. He has not gained much and they are giving us till april before we start appetite stimulant. If that fails they are thinking motility specialist who would probly put in J tube first. A little scary but your blog gives me hope and a feeling that I’m not alone in this battle. Thank you. .
I have Gastroparesis and have had it for almost 4 years now. I’m 19 years old and have idiopathic gastroparesis, which we think was caused from a stomach virus. I’ve had the Gastric Stimulator for a year and a half and have tried almost all of the medicines. Oh, and the youngest I have heard of a child getting a gastric stimulator is 3 years old. Not alot of places do children though. I would love to talk to you and be there for you if you have any questions. My email is: megan.kondilas@gmail.com  Also, have you heard of G-PACT? Its the organization for people with Gastroparesis. Here is there website: http://www.g-pact.org or facebook.com/GPACT There are so many support groups that G-PACT has on facebook and its a great way to connect with others that have the same disease. I hope your son is doing alright today! Sending good tummy vibes and prayers! I hope to hear from you soon! <3
Our little guy was failure-to-thrive for well over a year and went undiagnosed because of a pediatrician who insisted that we were simply too lenient with our son and allowing him to drink as much milk as he wanted. He would wander around with a single cookie ALL day long and not finish it! We had a GES done when he was just under two, and it showed some delayed emptying (27% after an hour, so mild) – and then a pH probe showed severe reflux. We treated the reflux, which worked initially, but now our son is 4 1/2 and nothing is working – the reflux is just getting worse. We saw a pediatric surgeon for a fundoplication, but after reviewing the little guy’s records, he’s concerned about motility again. So we’re back to the “is it just reflux or is it reflux/gastroparesis combined?” question. Nolan’s eating fairly decently now, but still prefers liquid foods to things like bread.Â
It’s possible to have reflux and gastroparesis. The reflux is usually caused by the gastroparesis becuase the slow emptying isn’t going downwards fast enough so it has to go somewhere which is upwards. There is nothing wrong with Nolan having liquids.  The body doesn’t know the difference between liquids and solids. Nutrition is nutrition and as long as the liquid has all the nutrients he needs. Try having him on pediasure. My daughter takes ensure plus to help boost her calories as she is underweight from her gastroparesis. (i really hate that word!).Â
My daughter, 2yrs old, just got diagnosed with this. We are trying to figure out what works for her. She too is on Reglan , just started a week ago. Life was looking up we had gone almost a week with no symptoms but now we are with the swollen tummy , the crying and the pain. I am expecting the vomiting soon.All she wants to eat is doritos and cheetos. I gave her an orange, no one told me this was a no no, and I am thinking this is what caused the recent mess. I am excited we are not alone and I am super glad to see your blog. Any info you have I am very interested and I would like to keep in touch! Thanks!!! LoriÂ
Hi Lori, sorry to hear about your son but I can tell you it will get better. My daughter has been very sick for 9 months with 2 small ulcers, gastritis and gastroparesis which she 3 yrs ago and got better. Why it came back we will never know. Perhaps the gastorparesis caused the ulcers. She is finally on the mend after such a long time. She just started back to school after so much time lost.  She still has mild gastroparesis and hopefully it will go away soon. Milk seems to settle her stomach and tums. Try staying away from heavy meats and raw fruits and veggies. Pediasure is great for the calories and you can add it soups ans shakes and even replace milk with it in cereal.
I just found your blog, and learned today that my 9yr old grandson has GP. I am 55 and was diagnosed with it 1 1/2 yrs ago. I believe my vagus nerve was damaged when my intestines was perforated during colonoscopy, though I have had gut issues since I was 17. We are searching for guidance, I can give pointers, but remind his parents that I am not a Dr. I can’t help but worry that he could have reflux, I suffer with it terribly and know that only a Dr can diagnose this. I hope only the best for your little one and all of those who haven’t been diagnosed. Thank you for writing this blog, it’s great!
I just came across your blog because my 3 year old has some digestive issues and we’re trying to figure out if it is this. My husband and I really think this is what it could be, but aren’t sure and have tried so many things. I think we’ll have to “convince” the doctors to test for this – how did a diagnosis come about for you? We first thought it could be some food allergy, then found something about whole grains..and most recently the doctor told us to give her more fiber – which made her stomach worse (which is why we were searching and came across Gastroparesis). Any help, suggestions, etc would be awesome. Thanks so much. Â
Hello, my name is Janette from Orlando, Fl. I was diagnosed with GP back in Nov. of 2009 when i had a gastric emptying study done. Just this month I had the same study done and it showed to be within normal limits? I’m confused? My symptoms are worse and just confused? I’ve changed gastroenterologist several times and still have alot of stomach issues and no true answers nor diagnosis. Anyone out there having my same problem? I would like to hear from you all.
You’ve described my 13 month old son word for word . We are experiencing exactly all of the above. He was diagnosed today hours after his gastric emptying study that he has a severe case of gastroparesis. They prescribed Reglan today and I’m truley scared to give it to my son because of the potential side effects. They mentioned surgery . Does anyone know at what age they usually outgrow this condition if it’s just an underdeveloped digestive ststem vs. chronic condition ?? I see his GI doctor in 2 weeks to follow up.
Hello, my son is 27 months and was just diagnosed with Gastroparesis. Weight gain has been a struggle always, lots of vomiting was present but he was diagnosed with Reflux at 4 months. Two weeks ago I told his GI that he continue to refuse meals acting like he was full even though I know is been hours since his last meal. He insisted that it was a behavior issue not a gastro issue since he has oral motor problems and Autism and he probably just don’t want to bother eating. However, to be save he still send him for a stomach empty test and was diagnosed then, was given Erythromycin 200mg 4x daily. I thought is was a simple problem, reversible and that after medicines for couple months he was going to be fine. However, after reading information online, including your blog is pretty scary. I’m already stress out to keep up with therapies due his Autism, this condition is making me now more nervous and worry. Now I’m trying to figure out what diet regimen I should do for my little one. Now I know is more common than what I thought and I don,t feel alone anymore ;). Thanks for posting your experience it was very helpful….Ln