Discussions By Condition: I cannot get a diagnosis.

any help would be great

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: 1koolteacher
  • July 7, 2008
  • 01:13 PM

My daughter is 11 years old. She has a stomach tic, spasm, movemment. It has been called many things by different doctors. I would like to believe the doctor but my daughter has also lost 27 lbs (Nov 07-Feb08). Since Feb, she has kind of leveled off with the weight, gaining or losing a pound or two here and there. The neurolgist say a tic would not affect appitete. She has had a lot of tests done through the GI department and they say she has nothing related to gastro stuff. She has been seeing a pscyhatrist since May, since her mood got really sad (not eating enough). They put her on Prozac and that has definately helped with her mood. I have also taken her to see a therapist and she thinks I should be looking at another hospital for medical reasons as she doesn't believe it is eating disorder. My daughter swears she is not trying to lose weight as well and that she just wants to be average weight. She doesn't pass up sweets or count calories either. Her current symptoms are stomach hurting, more when she eats and getting full quick. She doesn't eat much and I usually have to remind her to eat. She also has headaches and dizziness but I think that is from not eating/drinking enough. I am so worried the doctors are missing something as something is not right with my daughter. Any ideas from anyone would be great!!

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10 Replies:

  • I forgot to mention that one of the doctors my daugher is seeing says she just needs to eat to make her stomach feel better. He says we don't need to know how the problem started. It is frustrating that he thinks there are no other medical reasons for this problem and simply says she needs to eat. Does anyone have any experience with this?
    1koolteacher 14 Replies Flag this Response
  • does she ever have really bad "stomach cramps"? is her urine ever a weird color?
    dizzy lizzie 192 Replies Flag this Response
  • she complains of a stomach fullness and/or nausea (sorry spelling) but never any vomiting....she has not used the word "cramps" but i don't know if she knows what cramps are? her urine seems to be normal color except sometimes dark in color and/or less urine because i know she doesn't drink enough fluids...she says it hurts to drink as well as eat can i ask what you are thinking?
    1koolteacher 14 Replies Flag this Response
  • It doesn't seem to fit but I was wondering about Purphorya (sp?). It is genetic and tends to show up in young girls as gastrointestinal but the characteristic symptoms are severe "stomach cramps" with heart racing and urine that turns a dark purplish red. So I have serious doubts that that is it b/c you'd know if she had those kinds of cramps. She'd be doubled over.Could it be food poisoning or a new development of a food allergy? You should try to keep a food diary for a few weeks. Have her eat something with just a few simple ingredients at a time and see if everything makes her sick or just certain foods.Hope that helps.
    dizzy lizzie 192 Replies Flag this Response
  • Thanks dizzie lizzie. yeah, i agree i don't think she has what you had thought. how long would food poisoning go on for? isn't there usually vomiting with it? i have thought about allergy although her doc says no bc she doesnt have normal symptoms. she complains of stomach hurting no matter what she eats and/or drinks. she says everything hurts all the same. i had an allergy appt made but i have to reschedule asap...long story about that
    1koolteacher 14 Replies Flag this Response
  • It depends on what kind of food poisoning it is. If it's food that has gone bad you'll have a different reaction than bacteria carrying food. Usually food poisoning induces nausea and diarrhea and sometimes other symptoms like fever, headache etc. Some fish contain toxins that can make you sick more long term but it will generally go away on its own. I was thinking if it's food poisoning from something that she only eats a little bit of at a time it could be making her sick again every time she eats it. Or the same deal with a new food allergy. The thing with doctors and allergies is that they tend to have a very narrow view of what symptoms can be - in fact that goes for other causes too. It's why so many people go so long being misdiagnosed- b/c they didn't have the one characteristic symptom that usually defines that disease in their mental diagnostic files.Just for example, my mom all of a sudden developed horrible food allergies to most food. Through keeping food diaries and doing simple eliminations she was able to narrow the field down to the 6 foods she can eat without getting sick. These foods randomly change and she has to start again. She has had to completely cut out all dairy products and wheat/gluten products as well as a list of random things like apple juice, turkey, broccoli & cauliflower etc. You'd be surprised how many things have hidden parts of dairy or wheat products in them. She cannot eat most marshmallows, salad dressings, soy sauces, etc etc. She's had every test there is for everything anyone can think of including a body scan and nobody can find the source of her problem so she avoids what makes her sick, does yoga to manage the stress and lives life as much as possible. It may not be necessary for your daughter to live that way but it may help her feel better in the short term until they figure out what else is going on.
    dizzy lizzie 192 Replies Flag this Response
  • I Would Rule Out Food Poision. I'm A Cook In A Resturant And Have Been For Over Ten Years. Im Certified By The State In Food Saftey. If She Had Food Poision She Would Feel Very Ill Want To Vomit,cramps,diareah,symptoms Just Like The Flu. And The Chances Of You Or Someone Giving Her Bad Or Under Cooked Food For Months Is Very Slim. Some Fish Do Have Toxins But Most Are Rare Verieties And Some Even Have To Be Cleaned By Specialy Trained Chiefs. Now Most Fish From The United States Do Contain Low Amounts Of Mercury An Dioxens. I Hope This Helps And She Feels Better. One Last Thought Seeing She Is 11 Could The Have Some Thing To Do With Her Possible Getting Ready To Start Having Her Cycle I Dont Know Im Just Throwing Out Ideas. Best Of Luck.
    jhopkins 24 Replies Flag this Response
  • Thanks so much! I am desperate to solve this as I feel absolutely helpless in the sense that I can't help my daughter! Lizzie, you are right about doctors and thier ability to look outside the box and have any answers other than what is in the typical medical files. I live in Michigan and have been going to U of M. They are suppposed to be the best...but I don't know...I feel like I am at a dead end and the docs are not trying much more to figure this out. I was trying to give the Prozac some time to work but I am really afraid of side effects as I read a lot of threads under the mental conditions and have done other research on Prozac. Does anyone know of another place to go? I have heard about Cleveland and Mayo Clinics...any experience on either? I have been on their websites but that is it so far.
    1koolteacher 14 Replies Flag this Response
  • You need to see a really good GP that can oversee her care, if you aren't already. That way, if the GI people say there's nothing wrong, you won't have hit a dead end. Also, you should get the GP to do some basic blood work-up, just to try to find the source of the tic and appetite loss. Blood work can show (or signal) if she has an infection, if this problem is putting any stress on other organs or systems in the body, and it would be helpful to see if her under-eating is causing any malnutrition problems. At least you will know where to start. I know it is not what you want to hear, but if nothing comes up abnormal, you shouldn't worry too much about it as long as it is not negatively affecting her life too much. It might be annoying to have to eat when she's not hungry, but it's not an urgent medical problem in itself. Sometimes it's better just to cope with what she's got (maybe her body just doesn't signal hunger, and that's as far as it goes) than to deal with the stress of going to all kinds of doctors who don't believe her. If these are symptoms of a more serious condition, she will almost certainly present other symptoms. Until then, you may want to speak privately with your daughter's psychiatrist to ask her if she thinks your daughter may have an eating disorder, just to be safe. I hope you figure out what's going on!!!
    fillingim24 6 Replies Flag this Response
  • I completely understand. Antidepressants are the fall back for Dr.s when they don't know what else to do. I have been told that I am depressed by 2 Neurologists. The first time I thought "I don't THINK I am depressed but maybe I should find out." So I went to a Psychiatrist very open-minded and we talked - in fact we spoke on the phone for a good 2 hours total before my evaluation. He agreed that I am not depressed. Yet every Dr who doesn't know what else to say tells me to try antidepressants. Every Dr who thinks they know what's going on (but it's outside of their specialty) tells me I'm not depressed. So I am caught in between the Dr.s who COULD diagnose me if they were willing to spend the time figuring it out but won't and the doctors who would be willing if they COULD but they can't. Grrrr. I would say if she tells you the Prozac doesn't make her feel better, take that to heart.Personally I don't know of any Pediatric Specialists who could help. If I hear of anybody I will post though. I hope they figure it out soon. I can only imagine how hard it is to be the parent in this situation. I know MY Dad is going a bit stir-crazy.
    dizzy lizzie 192 Replies Flag this Response
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