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Trouble figuring out my son's diagnoses
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Trouble figuring out my son's diagnoses

My son is 17 and has had many stomach problems for years he now weighs 97.4 lbs and he is about 5'8 . the doctor has been very concerned with the weight. he had the colonoscopy and endoscopy done and the results from biopsies was E.E.ok well thats just to do with acid reflux basically and he said it was pretty bad. But this doctor is still pushing that my son has Crohn's so now is ordering for him to do the pill cam and my son can not swallow pills so they have to put him to sleep and then put it down him. How is this going to find what the colonoscopy and endoscopy could not? Why can't he just put him on the meds for crohn's and see if that helps? Is there anyone else that has had this with a child this age and this small ? BTW tested neg for crohn's and celiac and all the other stuff. Although we went gluten free and it did stop some problems but still lost more weight!.
3 Comments Post a Comment
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1340994_tn?1374197577
Does your son have diabetes?  What is his complete list of symptoms?  What does E.E. mean?  What did the reports say?  What is the diagnosis so far?  Does he have deficiencies in vitamins and minerals?  Does he have constipation or more diarrhea?  Did they do cultures for infection with endoscopy?

There isn't enough information here considering all the testing he has already had.  
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Avatar_m_tn
Im sorry about that , EE stands for EOSINOPHILIC ESOPHAGITIS. His symptoms are Diarrhea every time after he eats with bad stomach ache. Blisters in mouth, very under weight, loosing the enamel on teeth. Always has sinus issues every day 24-7. Bad head aches, can't sleep at night. No energy. He had complete blood work up and nothing came out of that. Just had the E.E. and acid reflux pretty bad, and a little gastritis . They did do biopsies in the colonoscopy and the endoscopy. Hope this helps.
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1974283_tn?1328326848
I watched my mom ask my doctors the same questions when I was younger. "Why can't more be done?" "What is this condition?" "Where do we go from here?" "Will she get better?".. My doctor, at the time, liked to reply with "we don't exactly know, not at this time, the condition is very different from person to person."

In the long run, taking medications you do not need is not a good thing. If he is given an immunosuppresant or a steroid it could cause more problems. There's steroids that help with the small intestine and steroids that do full body but are localized to colon and such.

In my experience, as awful as it is, the more time the doctor takes to figure out the problem and get an exact diagnsis the better chance you rson has of having a healthier life. I spent 10 years going through hell with diarrhea, vomiting, bloating, bloody stool, rapid weight loss, couldn't gain weight, bathroom 30-40 times a day, always fatigued. I went from being an honors student to not attending classes because I was always in the bathroom. Your son is going through a lot, but if I knew what I know now, I could have saved myself a lot more trouble and if I gave the doctor that time to search for the answers back then maybe I wouldn't be where I am now.

If you are unhappy with the time it is taking your doctor to get back to you or the answers he is telling you, tell him. If he cannot provide you with the knowledge and support for your son that you need, tell him you would like a referral to a new doctor. I went through 3 GI specialists before I found one that works for me.

(Keeping a side note that I am happy and healthy now. It took a long time and a serious surgery, after a ruptured colon, but I never thought I would ever be here.)
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