<p>Hugs to you and her. There are many who are handicapped in a number of ways, who are supporting themselves and making their own lives. With the internet, so much more is possible.</p>
<p>EPTR–very possible. When no obvious answer presents itself, sometimes you have to start looking outside the box a bit. One saying I’ve heard with DD’s condition is “think Zebra”, meaning when you hear hoofbeats, instead of thinking horses, think Zebra’s.</p>
<p>Yes. That’s what I was thinking. I mean vomiting is one thing but nausea is another related thing. Often, doctors are too quick to start treating the symptoms and aren’t very creative about looking for the cause.</p>
<p>dkitty - What a frustrating situation. Is your D keeping a diary of her daily food and meds? </p>
<p>I used to be able to eat/drink anything and after a simple surgery I developed allergies to any food containing preservatives. (specifically sulfites) I also developed strong reactions to drugs and the fillers they use in vitamins. I was gene tested at the Mayo and interestingly there are 4 large categories of drugs that my body does not properly metabolize.</p>
<p>Even if she had a negative test for Celiac, she could still suffer from a gluten intolerance.</p>
<p>Keep advocating for your D and I am sending good thoughts her way. It can be difficult to keep a positive attitude when things keep going wrong. I find the Cleveland Clinic has a great website.</p>
<p>Thanks for all of your replies. I am keeping a list of all the possibilities that have been thrown out here and will try to address them one by one. I have noticed that a lot of doctors grab onto a diagnosis and try to twist everything to fit that diagnosis. One even told my daughter that she was fine as she had not lost any weight at that time. Really? Fine? Puking every day is NOT fine!</p>
<p>I thought they had a new way of diagnosing UC that didn’t involve any kind of prep and was very minimally invasive (I’m assuming you mean she can’t prep for a colonoscopy). I’m not sure how Crohn’s is diagnosed tbh… let me try looking for it.</p>
<p>Oh gosh OP, that’s awful. Chronic illness is a full time job all on its own. As someone up thread said, you are constantly recalibrating. The modern family is all about planning, and chronic illness makes its hard to plan at all. No one has mentioned eosinophilic esophagitis yet? Has she been evaluated for that? Food allergies? Celiac? Autoimmune enteropathy? I’m not a doctor…, but EE presents with lots of reactionary vomiting.</p>
<p>If you can go see anyone at Johns Hopkins, their GI department is fabulous and comprehensive. S2’s second evaluation was there. She needs medical attention from doctors who find her illness compelling. We actually cold called, and got in fairly quickly. Do not be afraid to rattle cages and stress how unsolved and debilitating this has been. Go ahead and say life-threatening. Cite her weight loss as a percentage , or her weight as a percentage of healthy weight.
All our best hopes go to you both. Hang in there. School will wait. All is not lost. Help will arrive.</p>
<p>Darn, I can’t find it. I know that lab tests can point to UC/Crohn’s but not make a more “definitive” diagnosis. I wonder if that would be enough to try treating it. I am absolutely no doctor though. </p>
<p>Again, just good luck.</p>
<p>My first thought was celiac, too, which I see has been mentioned. </p>
<p>Have you tried a elimination diet for her? Cut out everything except a few foods, then add things one at a time to see whether something makes her sick? </p>
<p>And what you said about a doctor getting fixated on a diagnosis and twisting it to try to make it fit… I hear you, totally. Went through that with my son; the diagnoses given just didn’t seem right to us and left his dad and me scratching our heads. Finally we got a diagnosis that OMG fit our kid. </p>
<p>I trust you’ll find the one that fits yours and I wish the best for her.</p>
<p>For nausea, I’d suggest you try candied ginger–sold at health food stores, baking sections and in “oriental markets.” It can really make a difference and was the best treatment on Mythbusters.</p>
<p>I’m so sorry, OP, that your D has been through so much. Our kids suffered chronic health issues for the past 11 years, all through HS and now even in college. In fact, our D was asked to leave HS after her JR year due to frequent and prolonged medical absences. She did enroll in CC & commute (actually I served as her chauffer/shuttle driver). She was able to transfer to her dream U which is 2500 miles from our home & mostly doing better now, maybe up to 75%.</p>
<p>Our S was having a LOT of nausea in HS for a while. He had a brain MRI and abdominal ultrasound and saw a pediatric GI doc. Fortunately, after about a year, it finally went away–never got a diagnosis and the GI was convinced it was psychosomatic, even tho S loved school & was equally ill when lying at home.</p>
<p>Good luck!</p>
<p>I read an article, “Welcome to Holland.” It described being the parents of a kid with chronic condition as having prepared extensively & packed & boarded the plane for London but landing in Holland. Everything is unfamiliar and different from what you planned and prepared for but can have it’s own bright spots. Somehow, that helped us feel a bit better. I am grateful that now, both kids live FAIRLY “normal” lives, even tho sadly, neither has the stamina they had when they were 10 years old.</p>
<p>Sorry. Wish I had something to offer. Marinol is the pill someone mentioned instead of marijuana. A fellow pharmacist’s wife tried it and it was no help. Honestly, I haven’t heard that Marinol helped anyone for nausea or to increase appetite.</p>
<p>My mom tried whatever the supposed alternative was to marijuana when she was undergoing treatment that had very similar side effects as chemo. Did nothing. Pot was the only thing that helped her keep food down and get an appetite. Her doc said that they haven’t really discovered what it is that works in marijuana.</p>
<p>Our son had terrible nausea and vomiting for months when he was 5 years old. Poor kid, he’d be hungry and eat and then just be so sick. There was no reason to suspect giardia, but after he was treated for it he was fine. Just a thought.</p>
<p>OP: I have a suggestion for your D. Would she consider acupuncture? It can be helpful with conditions that are not responding to traditional Western medical treatments. I have been treated for years by a wonderful Chinese woman who was a surgeon in China and who now does acupuncture here. I also get massage and reflexology (foot massage) treatments from someone else at her office. Those treatments have helped me a lot. </p>
<p>Acupuncture in Chinese medicine can help with any sort of condition, and it will not interfere with her other Western treatments.</p>
<p>Another suggestion if you do not get adequate diagnosis is to go to the Mayo Clinic. My childhood friend had a D with very serious medical issues in high school due to side effects of an experimental drug for seizure disorder. Downward spiral of complications, long story, very serious, multiple specialists and hospitalization. They went to Mayo and they sorted it all out and stabilized her and have supervised her care over the past 20 years. (She is now married and the mom of twin girls!) I just mention this because this young woman really was a medical mystery but she did receive help.</p>
<p>It’s interesting that you mention acupuncture because I was just thinking the same thing. Another thing to pursue is “Atypical migraine”. I have two friends who have been affected by them. One of my friend’s son, when he was little, would get sick about once a month with a mild headache, fever and nausea. He was missing a lot of school. They diagnosed atypical migraine and he saw an accupuncturist for years and got relief.</p>
<p>Another friend had the same thing as an adult but her symptoms were different. Sometimes migraines can present as something else.</p>
<p>I still keep think inner ear rather than gastro, though. Not that I know anything about medicine.</p>
<p>If she is drinking Gatorade to replenish her electrolytes from vomiting, please have her switch to Smart Water. There are too many things in Gatorade that can affect a sensitive system. Like citric acid and brominated vegetable oil (BVO - which is banned in Japan and Europe from their Gatorade).</p>
<p>At this point I will try anything. She is going to a chiropractor to see if maybe her vagus nerve is the problem. I am trying to find an accupuncturist and reflexologist in my area. I will look into Hopkins today. I sat down with her pediatrician yesterday to try to come up with a game plan and she also brought up Meniere’s disease, which is an inner ear abnormality. I will be calling ENT today as well.</p>
<p>Thank you so much for all of the ideas and strategies you are giving me. I am a fixer by nature so it has been frustrating to not be able to fix her. You all have replenished my strength and I will continue to fight to find a diagnosis. </p>
<p>She really can’t eat so an elimination diet won’t help. But I will do the Alcat testing to see if she has food sensitivities that could have triggered this.</p>
<p>She has confessed to trying marijuana and lo and behold, those are the days that she can tolerate a small amount of food and actually function without nausea. I am torn as I really struggle with the legality.</p>
<p>Has your daughter been tested for H. pylori?</p>
<p>A friend’s daughter went through something very similar to your D in high school. She suffered from such severe nausea and vomiting that she had to drop out at the end of her junior year. Her docs performed comprehensive medical tests, but all were negative or inconclusive.</p>
<p>It was only due to the persistence of my friend, a nurse, that her daughter’s good health was restored. Her research led her to suspect that H. pylori might be the culprit. Although tests were inconclusive, my friend insisted that her D’s doc treat her for this bacteria with antibiotics. Within a month, her D’s nausea and vomiting vanished.</p>
<p>It’s all a distant memory now. Friend’s D hasn’t had any health issues since high school, and she’s now a senior in college.</p>
<p>Good luck in getting to the bottom of this. Hope you can find some answers soon.</p>
<p>D1 suffered from stomach problems for 5 years. She complained of severe pain starting freshman year in high school. Tried some medications (one for GERD, one to help the stomach contract and move the food). Finally had an endoscopy. No ulcer, no ulcer-causing bacteria. GI determined she had IBS. For the next 4 years we were pushing fiber. For the next 4 years, d1 suffered the gamut of GI symptoms (all the fun ones – gas, diahrrea, constipation, nausea, occasional vomitting). Bottom line, she never felt good. </p>
<p>Last summer, at her physical, her NP said, “Why don’t you give up gluten for a couple of weeks and see how you feel?” Two weeks later, the kid is pretty much pain free. We did not pursue further testing as the NP said that with or without a specific diagnosis, the treatment is the same. Don’t eat gluten. </p>
<p>Someone mentioned celiac’s, but there are a number of other ubiquitous foods (soy, corn) that can make a person pretty sick. Allergy testing on the skin doesn’t always give an accurrate reading for a food allergy. Try the elimination diet suggested. Can’t hurt.</p>
<p>Try looking at Harrisonspractice.com and search nausea. The site lists causes and differential diagnosis with possible treatments. Since your D has had many test already, you may be able to see new directions to go. Many of the suggestions people have listed here are on their lists.</p>