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My 15 Year Old Daughter Has Gastroparesis

Hi everyone. I do not have gastroparesis but my daughter does. Her gastro nightmare started when she was having odd once a month vomiting spells. I took her to my family doctor and she sent her to a pediatrician where they ordered tests. The found through tests that she has SMA syndrome. Her duodenum was blocked by an artery. She was vomiting quite often with this and her stomach was very bloated. After a few months of dealing with SMAS she was then diagnosed with gastroparesis. They had assumed it was from the fact her stomach and doudenum had expanded from all the food sitting in there all the time. So with 2 strikes against her I agrued surgery for her. There was nothing else that could be done for her. Last summer she went in for surgery. It was the only option for her, she was depressed, withdrawn and losing weight.  Everything was great after surgery. She was back to her normal self and could eat anything again. She had a great 6 months till January of this year. Suddenly the vomiting came back. This time is was with acid coming up, bad stomach pains, and no control over the vomiting. It was back to Dr appointments, babyfood and missing school and dance. I failed to mention she is a competative dancer. She trains long hours and mixing this with an illness is becoming harder and harder. This is an awful illness! Its so hard to watch such a smart and talented kid turn into an anxiety stricken vomiting mess. She fears going to school because she can never tell when vomit will just come out of her mouth in class. She has no warning...it just comes when it comes. Mornings are her biggest struggle...its a fight of do i eat today or not. She misses out on normal teenage life cause shes sick half he time. She is lucky to have good days I guess. She has maybe 10-15 bad days a month. I have heard stories of others having this every day. I can't imagine what you all are going through! As for medications she is on Omeprizol and donperidone. She is being weaned off the donperidone as her Dr  thinks after 5 months of it it should be doing something and its not helping her at all. She sees a pediatric Gasto specialist since last week. He is willing to try lots of different things to get her better. We are very very lucky to have him! Next step is to switch medications. Then will be to have her scoped. If that comes up with something and he thinks he can fix things she will go to surgery at Sick Kids in Toronto.
I have a few questions for those who are suffering with this awful illness. Are you taking vitamins? If so what kind? Are any of you athletes trying to keep up in your sport? How are you doing this? Have any of your Dr's mentioned surgery? Does stress and Anxiety make symptoms much worse?
I do hope that one day there will be a miracle pill for this or a surgery that fixes it all. Untill then please keep your heads up and my fingers are crossed that you will end up symptom free smiley
mom76 mom76 31-35 13 Responses Jun 14, 2010

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I can say this I know how your daughter feels I was 16 when I was diagnosed with gastroparesis that was three years ago. but I had been struggling with GERD and it since I was about 6. I wouldn't eat before I went to school too scared that I would throw up and that the kids would make fun of me, I missed out on many things and many friends I ended up having to do home schooling. I lost a lot of weight constantly I couldn't keep it on which forced me to stop playing basketball. Mornings were always hard I became so sick I spent nearly a year hospital that really didn't help, I fear throwing up it makes things hard really hard I myself tried donperidone and it doesn't help me. I found sticking to diets helped a little um trying to be around friends and support helped some. I hope things get better for your daughter since they are kind of looking up for me.

How does she go to school? My daughter's started at age ten and now she is 13. She has been home for most of her middle school years. Same thing, missing out on dance, school musical, soccer team, the list goes on.

I am so sorry to hear about this happening to your daughter.

I am/was in college when this occurred in me and I can completely empathize with the sudden and dramatic intrusion can have on your life.

I may be in the minority, but for me I've found that running helps with my nausea and pain. I'm an athlete and have always been and actually stopped for the longest time working out or engaging in physical activities for the longest time because I felt so sick/in so much pain and worried that I'd end up losing more weight. But I finally just decided to go running/exercise anyway, because it forces me to eat--you burn so much energy your body can't help but want to feed and nourish itself. It's helped at least keep me grounded during all of this because it's really easy to beat yourself up and slide into depression having your bodily autonomy stolen from you over an ailment you may have no idea how you came across in the first place.

For myself, I'd say encourage your daughter as much as possible to try and engage in as much physical activity as she can--if nothing else accomplishing just a little will be tremendously empowering and hopefully give her back some of the encouragement and confidence a thing like this can steal away from you.

Just take it one day at a time, and be as helpful and supportive as possible to her. Don't constantly comment to her on how it's difficult watching her diagnosis take its toll on her is affecting you--it's not helpful and it only reminds your daughter of how powerless she is in this situation. Listen to her, comfort her, and be the rock that she needs right now.

My best to you and your daughter :)

Wow, my daughters school recommended she be evaluated for anxiety. Not wanting to look like bad parents, we did this. No anxiety, just severe nausea that started when she was ten. She has missed most of her middle school years, it kept up with work from Homs on days she was able to. Now the school says no child should miss school for that long for just nausea, and told us they don't trust us or our decisions for our daughter. That is a scary place to be, wondering if we could be reported for her missing so much school. There is so little understanding. Something we just started that seems to help is making bone broth for her. Recipes online. Also takes liquid vitamin d, powdered vitamin c, a liver cleanse drop, and Byron Whites A-V drops which were created to draw virus out of the body. Her GP started with a long virus, so her doctor put her on these drops. We have seen improvement since taking them. Best to everyone suffering. It breaks my heart to see a child's life pass them by.

Mom76,
My daughter has had gastroparesis for over 6 years now. I am answering your question as to vitamins to take.... We take Green Pasture Blue Ice Fermented Cod Liver Oil...the best on the market!!! Cinnamon Tingle is our favorite. High levels of vitamin D delivered plus vitamin A. Omega 3's included. Pricey...but we value quality. We also use Liposomal Vitamin C...I make this with our Ultrasonic Cleaner...You'll have to google it! Absorbable @70% or more and it replaces all that fruit that ferments anyways.... Regular Vitamins just rot in the stomach like the food does...Coconut Milk & Oils are very beneficial also...Im sure you've done a lot of research as I have and it is heartwrenching.

I am a 33 yr old & I really understand what your inspiring daughters story! I to have this terrible illness, I am to very sick, the mornings are my worse. How I feel in the morning is a sign of what kind of day I will have. I gave up my schooling because of this illness. I'm a single mother of a 13 yr old and as we all know teenage girls are very active and my daughter is all about here friends, but she also wants to go places and do things with mom and i'm so sick so many days it's heart breaking to say sorry baby mom is unable to do these things with you because mom is unable to get out of bed. I was sick for a whole yr before any doctor told me what I had. I had so many people in that 1st yr said, thought and swore I was making my illness up except my mother and the twist on this is I'm my mothers in home caregiver. I've always took care of her cause she is very ill as well, so basicly the sick taking care of the sick, but my mother has been there and has never thought I was making these things up because she was there all the time and kept better notes on my symptoms, I would have certain symptoms and l would brush so many of them off. I have tried multiple vitamins and it made me really nauseated, so I stopped taking them. Ensure is a liquid supplement drink, I've tried it before and is was 50/50 with me, some times I would be able to handle the drink but then the other 50% I could would get sick. I'm allergic to regulin and the other medicine your daughter is getting weaned offed. I suffer all I have to help my illness and makes me feel at least a little better is my medical marijuana. I don't smoke it all the time I eat the medicine. It's the only way I am able to eat and the only way I get out off bed. thank you for your story it's very inspiring I send my prayers to your daughter to get better there for she doesn't have to suffer her whole life!!! God bless you and your family! P.S thank you for your story It really touched me!!!

dear mom 76, My 12 year old started vomiting after she ate in the evening immediately following her surgery to remove her tonsils and adenoids. They didn't relate the two, but prescribed omneprezole. After a year on this medication, her condition improved, but still had constant stomach pain and occasional episodes. On Feb 25th of this year(2012) she began vomiting uncontrollably, unable to make it to the bathroom. Couldn't keep a sip of water down. She was prescibed everything from nexium to antibiotics to cancer medication. Nothing helped. After missing two months of school, (and a few nasty meeting with state workers in my home) I finally took her to our family chiropractor. He worked on her tommy and gave her probiotics. We saw improvement, like night and day, and whe went back to school and finished the year. Summer had a few episodes, but nothing out of the ordinary. We always attributed it to something; pool water, funny food, something. Then when school started, it started again only worse. The school counsilor suggested a phych evaluation, (our gi refused to have any invasive testing ..if you can believe that). We switched gis, and finally they found she had delayed gastric dumping..which the cause is unkown but can be related to diabetes. She was given an antispasm med, to prevent the vomiting, but didn't fix the problem. I fianlly was referred to a more wholistic doctor, who ordered severeral tests, and we found that my 278 pund 12 year old, who was gaining weight at about 10 punds a month through all of this, was severely malnourished. Due to the high dose of ppi's she is on, she is producing 0 acid to process her food, and is now on lipids, protien supplements, niacin, HIGH doses of vitamin d, b-12(sublingual so it doesn't have to be processed, the d are drops for the same reason), and we recently got tested for Cushings and other genetic disorders. Her insulin cae back high, and now the GI has sent us to an endocronologist. The detective work continues. Come to find out from online research and our holistic doc, the Nexium has triggered all of this. The gastric dumping problem, the malnourishment, all of it. We will be weaning off of that and staying on the antispasm. We go today to see what else we can look for. Poor kid, she's running on / storing only glucose because that is the only thing her bdy can process without acid. And with missing school an the depression of the illness, she is still getting great grades. My suggestion for your daughter is to have a full nutrient panel done, and then tak the highest quality supplements she can, making sure they are already emulsified so they are absorbed under the tounge. Also, believe it or not, on bad days; Benedryl actually really helps stop the vomiting when given with her Levsin. Good luck to you, I know it is scary, I am terrified everyday wondering if we are going to make it today. Also remember that being malnourished makes us crave sugar and carbs, which just makes it all worse. have her insulin level checked as well.
Hang in there...prayers for all who are going through this horrible disease...

hi my name is jessie. first off i wanna say sorry for your daughter. i also have GP i was diagnosed back in March. I am 21 years old and i also am having bad days. my gastro doctor has put me on Reglan which is only approved by the FDA for 3 months of continual use. i also am very atletic but since diagnosed can no longer spend more than 20 minutes outside in the heat.. i get worse vomiting the hotter i get. being as i live in louisiana it hot all day. i just thought id give you a little insite to what i dealt with and to what she can expect to come. i havent found anything that helps yet but will continue to research.......

I have gastropa too. I had a nightmare . I was a competitive runner, and then I started feeling sicker and sicker, I lost 30 out of 92 pounds at five feet, because I was a runner, I was immediately diagnosed with an eating disorder, though I was involuntarily vomiting and wanted to gain weight! I was sent away to a treatment facility for eating disorders, but there they knew it was not an eating disorder, I got a pej tube one that goes to the intestines, gained all the weight and then some, but I still vomited anything taken orally. I was put on reglan and could eat small meals, but it was. Of quite enough. I have only lost 5 of the 40 pounds in six months. When everything was found out I also hAve severe anxiety. That made my gastroparisis worse. They feed each other. Try getting the. Book living well with gastroparisis I found it so helpful, also eating a low fiber low fat diet decreases emptying time. Liquid supplements as breeZe and enlive are very easy to digest are clear liquids( mening they empy fastest) they will empty by gravity alone and contain protien and vitamins. I still am not perfect but with this book I learned to manage my gadtroparisis so much better! Hope this helps!

Hi - my son has this too, does anyone know of a good specialist in Ontario? He is 14 and has the nasal feeding tube fitted 6 wks ago and his stomach still hurts, the vomitting still happens and he is now vomiting acid from his stomach. I have been giving him fresh squeezed juice to help him with his strength, he is starting to eat baby food..........Any suggestions would be great? thanks

I need to find away to talk to you! My 12 year old son has SMA and gastricparesis!

I was a professional dancer too and i wasnt able to keep up with it all.. i didnt have the energy to dance all day anymore. cyclosine helps me with sickness and tramadol is very good for pain. also tube feeding is a good way to get some restbite from it all. i would not recommend the peg tube which comes directly out of the stomach. this caused a lot of pain and for a dancer was not practical when doing lifts and rolling on the floor. naso tubes are the best way forward. they may not look very nice but they can be made to look as discreet as possible. also try and get the gastric pacemaker fitted. it didnt work for me but i know a lot of people it has done. i hope this helps in some way

I am a college athlete with gastroparesis. I was diagnosed when I was a sophomore in high school. The doctors thought I had asthma for the longest time and I was on the highest doses of the strongest asthma meds and still struggling to breathe. Then after constantly feeling nauseous and gagging all the time I had an upper endoscopy done along with a stomach emptying test and sure enough, I had GP. The reason for my troubled breathing was the GERD that accompanied my GP. Although I wasn't vomiting, both acid and non-acid were being refluxed into my throat, which irritated my vocal cords and resulted in vocal cord dysfunction. I really feel for your daughter. I sleep with the head of my bed raised 6 inches (i just put those nifty little bed risers under just the head of my bed). I have talked to my doctors about surgery but they don't think it will be beneficial. I have been on every medication. Reglan, domperidone, erythromyocine...at one point I was taking 5 different medications 4 times a day. I am now on Zegerid which I prefer to Omeprazole. My doctor writes me a sc<x>ript for the suspension form. I also take a supplement called triphala which helps empty my stomach. A protein powder that has been suggested to me but I couldn't find at my supplement store (I live is Massachusetts) is called Healthy and Fit. Regular protein powders hurt my stomach, but this one is different because it is made of short chain fatty acids which will digest more easily. A big help for me has been juicing. I bought a juicer this summer and when I'm having a flare up it's the best that I can still get nutrients when I can't eat. As for athletics, I am a freshman at Fitchburg State University and I play basketball. If I am having a difficult time at practice I will just step out and walk for a bit. My coach knows the situation and is very understanding. I stop eating 4 hours before I have practice or a game, and I stop eating 3 hours before I lay down. I also struggle with anxiety and depression and when those get worse my stomach can forget it. Stress definitely has a huge impact on my GP. I hope this was helpful and best of luck to you and your daughter!! You are so NOT alone!!<br />
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-Alyssa

I feel so for your daughter, and for you as you try to figure out how to help her.<br />
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Vitamins are a problem for me. I've tried all sorts and they all (so far) seem to increase the pain and sensitivity of my stomach, even the liquid ones. Since I started drinking Glucerna (beside the Ensure at Wal-Mart), I can tell I'm getting lots more vitamins/nutrition and it is soothing to my stomach. I am just beginning to investigate the protein powders that the body builders use, but am having trouble finding both vitamins and fiber in a gluten-free, dairy-free product.<br />
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I hope you and the doctors find what works for your daughter.<br />
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