<p>Hi everyone, I hope it’s okay but I need to vent. I’m so sad and frustrated.
My daughter has battled medical issues for many years. She was off to college, happy and well adjusted, and here we go again! She now has stomach issues, vomiting in the morning and nauseous all day long. (No, she is not pregnant, this has been going on for 7 months already) She had to withdraw from college last semester after being hospitalized for a week for vomiting and dehydration. She is now home and is going to take classes online at the local community college.
How much more is this poor child supposed to take? Her whole high school career was tarnished by her bone tumor (benign, thank god). And now, she had to leave college. I feel so bad for her and so overwhelmed. No one seems to be able to help her. I am so stressed I can feel my blood pressure going up.
Does anyone have experience with intractable nausea? She takes Zofran and it doesn’t help. They put her on Reglan which seems to have stopped the vomiting, but she can’t stay on it because of the possibility of really bad side effects. I don’t understand why some people have so much suffering.</p>
<p>Has she ever had migraines? migraines and cyclical vomiting sometimes go hand in hand (had a good girlfriend with this). If so, the newer migraine medications (she uses Inderal now) have helped my friend greatly. She also for a while took antidepressants and that seemed to help lesson the frequency of the cycles. The thinking was that stress and anxiety (about feeling the nausea coming) was increasing her symptoms.</p>
<p>No migraines. At this point I would take cyclical vomiting syndrome. At least she would have periods of wellness.</p>
<p>So so sorry. I feel especially sympathetic today because I feel like I’m coming down witht he flu. It is a horrible feeling, and I can’t imagine suffering for months. The only idea I can think of is a controversial one, medical marijuana, if it is legal where you are. I have actually never ingested it, but if I were suffering like that, I would seriously consider it.</p>
<p>She actually suggested that. She is going to start the “jumping through hoops process”, but it will likely take a while. Why can’t they come up with a medicine that acts on whatever marijuana acts on to stop nausea.
And while that will treat the symptoms, I want to find the cause and fix that.
It’s so hard to watch your child suffer. And she has been suffering with different ailments for 7 years. Enough already</p>
<p>Have you ruled out anxiety as the cause?</p>
<p>I have a chronically ill child. I get where you’re coming from. Mine had to drop out of high school. I get the helpless feeling. I get the exasperation, and the wondering, “How much longer is this going to go on?” </p>
<p>I imagine this may be easier to do with my high-school age daughter than with your college-age one, but the thing that relieved the stress for us most of all was completely giving up on timetables. This was hard to do. My wife said, quite aptly, that it’s been like driving with a GPS, but getting off course. First the lady in the box tells you, “Return to the highlighted route.” And you mean to do that. You fully intend to get her patched up and back to school. But the illness interferes, and you stray farther from the highlighted route. The lady in the box comes back, but she sounds a little more tense: “When possible, make a legal U-turn.” And you really mean to turn this thing right around, so you can at least get back to where she was before. But the illness gets in the way. Eventually, the lady in the box gives up, and with a note of resignation in her voice, she says, “Recalculating.”</p>
<p>That’s where we are–all the darn time, it seems like. Constantly recalculating. We’ve let go of a lot of the expectations we had when she was little. Some of them are just unattainable with her illness; others might be attainable, but the cost of attaining them would take too great a toll on the family. So, we try to make sure she’s continuing to move forward, and we figure, wherever it is that she’s headed, she’ll get there eventually.</p>
<p>dkitty, do you have a satisfactory diagnosis, and a prognosis? Is your daughter expected to recover (at least mostly, if not completely) some day?</p>
<p>Have they screened for other types of cancer? A friend of our’s had non-Hodgkin’s and initially presented with severe vomiting. He is 15 years cancer free now. Not to scare you but something to look into.</p>
<p>Our DD has chronic medical issues as well. I can offer sympathy. We are hoping she gets through college without major issues but we will have to wait and see.</p>
<p>Has she been tested for Crohn’s, Ulcerative Colitis, etc? Those are the symptoms that people going through flare-ups get, although I can’t imagine it lasting for months on end. </p>
<p>I would 2nd the medical marijuana. Whatever your feelings on it, it generally works. It does not need to be smoked. It can be ingested in any number of ways. </p>
<p>Good luck- I hope they figure out whatever it is.</p>
<p>dkitty hang in there. My wife first got sick in grad school and it was a long drawn out process to identify what her illness really was. Never doubt her and never let her doubt herself. The medical field is not perfect and she will most likely get both good and bad doctors on this journey. Fire the bad ones.</p>
<p>To add on to what tom said- tell her to TRUST her body. She knows it better than the doctors. I went for years without an accurate UC diagnosis because the doctors didn’t really, truly listen to my symptoms. Be persistent. She will beat this!</p>
<p>While she was hospitalized they had neurology and psychiatry come see her. Psych said she was the least anxious person they had ever seen. 
We have a possible diagnosis of gastroparesis. Prognosis? No one knows. Some people get better, some struggle their whole lives. They can’t tell who will recover and who won’t.
Your analogy of GPS is spot on. We are constantly “recalculating”. I just want her to be normal.</p>
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They do have it in a pill form. I can’t offhand remember the name of it. You can also eat it instead of smoking it. I would seriously consider it.</p>
<p>My daughter has chronic gastritis and from a very young age would vomit all the time. She has grown up with near chronic nausea, burning, hiccuping (trust me once or twice is funny - this is painful), vomiting, etc. </p>
<p>Has she had an endoscopy recently? We ended up taking her to a pediatric gastroenterologist and she’s been with them for about a decade now. </p>
<p>I get it’s not as severe as what you deal with and a lot of my d’s issues need to be controlled on a regular basis or else she gets really bad flare ups. You know even as a baby she wanted to lay on her tummy or else she’d cry her eyes out. To this day she does it.</p>
<p>Is food an issue for her, or allergies? </p>
<p>My son has the drug they give chemo patients for nausea. He gets migraines and that helps him.</p>
<p>No suggestions, no ideas, but hugs and condolences to you.</p>
<p>I am sorry to read this. It is a heartache and I know you’d trade places with your DD in an instant. </p>
<p>I want to share a story that I know fairly well. I have a friend whose daughter suffers from anorexia. It was always an issue in high school, and it finally reached a point where she had to be institutionalized to save her life. She then seemed to be on fairly even keel. She was always an exceptionally good student and her test scores were way up there. The parents agonized all through the college process trying to decide whether to let her go away to school or not. In the end, they decided she had to stay home and commute. She had to turn down some highly selective schools in order to do this and instead stayed close to home. It was a difficult decison and the DD was not on board at all which made it even more tortuous. The deal was that if she could get through two years without relapse, then they would send her where ever she wanted and could get accepted. She relapsed. The parents have been in close contact with support groups, and found not only were they not alone, but some families lost their daughters… The success rate of a young person of that age going out on her own with that severe of a malady was very low. </p>
<p>Fast forward ten years later. Young lady is now in her 30s, graduated from college and is living in Manhattan after going to Columbia for grad school. Little steps it took. She knows she is always at risk. She still has eating issues and is undergoing therapy, and it is important for her to keep in touch with family and those who care about her and can intervene if needed. She has studied her particular ailment thoroughly, and now will ruefully say, she would likely have been in real trouble had she gone away in her younger adult life. Too many other issues. </p>
<p>The thing is, going away from home like going to college is a stressor and a heavy responsibility for anyone. To have a challenging medical issue makes it even more of an issue. To have to deal with alll of the things that anyone with a chronic medical problem has to do, and with severe relapses and compllications also in the picture, is a real ordeal. I would not want to support a young adult child of mine to do this unless s/he has shown very clearly that s/he is capable of dealing with these curve balls all alone in the familiar environemet wtth the doctors and networks in place. A few YEARS of standing back and watching your child deal with the issue alone but with you watching close by and interveining only when absolutely necessary is, IMO, very important. When you see that s/he can do this in the home environemet, then maybe an away environment can be tried but only after the medical plan is well in place with doctors and hospitals all lined up. </p>
<p>It’s not just the medical management of the issue your DD is going to have to master on her own, but also going on with her life despite the challenge of a complication or flare up , because in her case, ther reality is that this is likely., maybe inevetiable. If it is not possible for her to handle this alone in her home environment with friends, family and you around that she can direct and ask for help, then the chances of doing it away are zilch. It’s not a sink or swim question when the person can’t swim. My friends daughter was nearly 30 before she could handle curveballs and seek help and not botch up her commitments when she relapsed. She now has shown she can do this, because she has, all by herself. Also, as a very thin person who has damaged her health with her issues, she is highly susceptible to severe illness anytime she gets anything, and she has to deal with that as well. Has to do it whille working, taking high level courses and with all of life’s complications. Now she has demonsrated that she is capable, but even then her mother worries and will, for the rest of their lives. </p>
<p>Your DD is so fortunate to have you helping her through this. Keep her at home until she can be on her own locally. That may mean communtiy college, on line college rather than an away school. Finding and keeping a job with her health problems is going to be a challenge. That’ is a big, big step. Maybe living in her own place in time when she has mastered dealing with her health and her job, and everything while living at home. Little baby steps, and expect back tracking too. There are some good schools going on line these days, like UC. Harvard too, that involves only short spurts on campus to get the degree, most of it can be done at home. The opportunities are there for her to get an education that way. Looking into jobs and careers that she can do, given her fragile and unpredictable health. Being a teacher, for instance, is not a good choice as she would have to physically be there, unless there are venues in that field she can target that can be done at home. Being a researcher, a proof reader, accountant, statisticialn are some ideas of jobs that can be done without having to go into work each day. </p>
<p>Your DD faces enormous challenges to be on her own just locally. To throw going away to college in the mix is really too much, IMO. When she is pretty much totally in control at home, in the area, then perhaps she can contemplate going away to a whole other place.</p>
<p>CPT I totally agree. In my head, I have her doing community college, then maybe commuting from home and going locally to finish. She is on board with this because I think she knows she can’t handle it on her own. She wants to be an accountant so hopefully she will be okay.</p>
<p>Romani, she hasn’t been tested yet for UC or crohn’s because she can’t do the prep. She drinks 1-2 protein drinks a day and tries to keep down some baby food. She is really unable to eat. Thankfully she is a little overweight so, although she’s lost 10-15 lbs in the past month, she is not wasting away yet.</p>
<p>Steve-I looked up non hodgkin’s lymphoma. I think we are safe because her CT scan was okay and her bloodwork thus far is okay, but I will mention it to the doc.</p>
<p>We are essentially trying to go down the list of test and just keep checking them off. Hopefully, the insurance company doesn’t kick her to the curb. She has cost them a fortune already!</p>
<p>Possible oddball other things–immune problems, especially with a low IgG subclass 3, unlikely but you never know. </p>
<p>Have you asked that they bring in a multi-specialty clinic like John’s Hopkins or Mayo–or are you close enough to take her to one of those for an evaluation? They see so many odd ball things that they many have a better handle on this.</p>
<p>I know of three people who went through something very similar, OP. The first it did turn out to be Crohn’s. Isn’t there some way for them to test your D without the traditional prep? Otherwise, how can they possibly diagnose what’s really wrong?</p>
<p>The other person turned out to have celiac disease-a friend of D’s-he was really ill for a long time before they figured it out.</p>
<p>The third one was my nephew who ended up homeschooling for 2 years as they tested for all sorts of things. It turned out to be pre-diabetes, and would have been discovered much sooner but one of the tests had been mislabled so he was given the clear on that one. It wasn’t until my sister brought him to a specialist who had every test result from every doc they had been to sent to him and he had them re-do the mislabeled one. I hadn’t been aware that blood sugar a growth spurt and hormones could make a kid that sick. He lost some weight, got more active, began eating more healthy, and was closely monitored as he did. He is fine now, but they were really scared-and it took almost a year for them to find the mistake. </p>
<p>Good luck to you and your D-poor kid.</p>
<p>This is probably a crazy suggestion but could it be related to an inner ear ailment like a vertigo type of thing? The ongoing nausea makes me wonder.</p>