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]](http://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.
Cara and The Littlest 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.