<p>I would really strongly encourage you to go to the Mayo. She will be seen by a team of doctors from several areas of practice and they will review EVERYTHING. It’s a pretty unique system. You show up for your first appointment and after that initial appointment they discuss your case and set up a schedule of follow-up appointments to get you to the people you need to see. Typically you spend a week or so seeing dr’s, getting tests done, etc. It sure beats running from dr to dr to dr at home, waiting to get into a specialist only to find they can’t help, etc.</p>
<p>Well, I am sorry for you and your daughter. My D had a condition relapse this fall, and I know that ‘how much more can she take’ feeling.</p>
<p>She underwent workups by alternative docs who helped restore her gut flora to normal. This relates to the H. pylori comment above. Your D should try taking lots of supplimental probiotics, capsules or powders mixed with a little pear baby food.</p>
<p>I would do two things simultaneously. One, get a full workup at Mayo or similar place. (My cousin did this after local docs said they could do nothing, had a piece of her illium removed and recovered.) Two, get off all gluten and dairy, preservatives, any migraine trigger foods. Drink filtered water. If you remove offending foods plus restore gut flora, you might see improvements if this is her problem.</p>
<p>I will add that my son never tested positive for giardia, but the treatment for it is what helped him. Sometimes you just have to try stuff.</p>
<p>Marijuana for medical reasons is legal in VT and several other states. It is a shame that so many sick people can’t legally use this powerful remedy.</p>
<p>I agree with you, Beth. Docs tend to test to death, then when all tests come back negative they say ‘i’m done - good luck’. That is why trying things on your own, plus having a team workup, is so essential in difficult cases.</p>
<p>I would suggest that she not stop eating anything if she is going to go to Mayo or similar because it may change test results (Celiacs especially). It sounds like she isn’t eating at all, which is dangerous in itself. Losing that much weight that rapidly is not good, obviously.</p>
<p>If you do travel to Mayo, keep in mind that your travel costs, food, etc. are deductible on your taxes if they go over the 10% of your AGI. If you have a HSA, many of these costs are an allowable use of HSA funds too.</p>
<p>I disagree Steve, only because working on one’s own with elimination diets and supplementation to restore gut health may fall to the family alone and may be what finally helps the kid. (my experience). Plus it takes time for a gut to heal, and from what the OP says, this sounds like an emergency.</p>
<p>Gosh, I hope she gets better soon!</p>
<p>I don’t have any insight as to what is going on with your daughter, but I agree with those who suggested Mayo or Hopkins (or a similar place), that have departments devoted to unsolved medical mysteries and will take a holistic approach to diagnostics. </p>
<p>I wish you and your daughter all the best and a quick diagnosis and cure.</p>
<p>Treetopleaf–specifically talking Celiacs–if you stop all gluten before testing your test will often show a false negative. Even the dr’s will tell her that if she sets up an appointment for this testing. It may very well be a case where an elimination diet does come into play but right now, she can’t eat anyway and is actively seeking treatment for her D. Changing her diet, what there is of it, can hamper that search.</p>
<p>OP–I am a nurse and we used to give compazine or phenergan for acute nausea. They are not a cure for an underlying condition, but can calm things down. I guess your D’s doc would have recommended this if he or she felt it appropriate. Marijuana would be safer for longer term usage, imo, but of course the main thing is to try to get a grip on what is causing this. It sounds dreadful.</p>
<p>Stevema, I understand that eliminating gluten may yield a false negative on a celiac test. I also know that people can be told that they do not have celiac, yet some find, if they take the initiative to do a gluten-free trial, that their symptoms improve and eventually disappear.</p>
<p>My SILs boy was throwing up. He spent 2.5 weeks in the hospital. They ran tests and got his gut cleaned out. Then they brought him solid food - Mac and cheese and fried chicken strips. It boggles my mind that they would not even consider gluten as a source of his problems. He got home from the hospital and started throwing up again, at which point I strongly suggested that he get off gluten. He did, and is fine so long as he stays off of it. Two and one half weeks in the hospital did not yield this solution; his moms decision to experiment on her own did.</p>
<p>It may be that this poor young lady is fine with gluten, but so many people are not that it makes sense to give it a few weeks trial.</p>
<p>Man, that hospital meal does not seem like a great re-intro to solid food. Cheese and products that contain ANY milk in ANY form can also set off sensitive people. Gluten, as has been stated can be a trigger to even more people. Someone hopefully will set that hospital straight, especially their nutrition/dietitian department. I know when S was having a lot of nausea, we did experiment with trying to take out ALL forms of milk and all forms of wheat (more than just lactose and obvious forms). It was VERY challenging, especially for the kids who were teens.</p>
<p>Since symptoms did NOT improve and it was so hard to eliminate these products for very long (especially socially), we gave up and let them eat it again.</p>
<p>I agree that it can be very worthwhile to have several week trial of eliminating gluten in all forms and see if that creates any improvement in symptoms.</p>
<p>It boggles the mind, doesn’t it, what they feed people in hospital?! i love mac and cheese, but…</p>
<p>Really. Even school cafeterias are doing better than hospitals these days. Mine even has a salad bar.</p>
<p>Yes, that re-introduction to solid food was spectacularly bad. I can still see the food sitting there, i was so shocked. What makes me mad to this day about that boy’s experience is that, when I asked the doc-in-training if she would recommend that he take probiotics, dark storm clouds crossed her face, but when I quickly interjected ‘like yogurt’ her face brightened and she said, oh yes, yogurt is good. WELL, as HImom says, dairy can be a huge problem for some people. Good grief. HImom, what helped your son in the end? I have forgotten.</p>
<p>Hi, please check gastroparesis more thoroughly. A motility test will give good info.</p>
<p>I know this does not at all solve the problem, but please make sure she is seeing her dentist regularly. The acid from all the vomiting can wreak havoc on her teeth. At the least they can seal her back molars to keep the back teeth healthy. They can also give her a rinse to use. Most people like to brush right away after an episode, but it is not wise because it “brushes” the acid at contact. Swishing the mouth with water before is much better but a dentist can create a game plan for her while you are waiting for diagnosis.</p>
<p>Treetopleaf–it may very well be a gluten sensitivity, that isn’t the point. The point is CHANGING what she is doing while undergoing testing to find out what the problem is. That change may prevent the dr from finding out what is wrong.</p>
<p>Have they checked for a hernia? Sometimes the bowel can get tangled up and cause a partial blockage resulting in vomiting.</p>
<p>A sibling works at a medical marijuana clinic which came in handy when our mother was vomiting due to a prescription allergy. She took two capsules of dried marijuana and her vomiting stopped almost instantly.</p>