This is a follow up to EKG abnormality in teen posted 11/14...

  Sorry...I am having trouble with my text only browser and it is not letting me post a follow up right....I think my follow up question was intermixed with the regular post and some was chopped off and overall it was probably pretty unclear....the pitfalls of getting a free internet connection!
  Anyway, she did see a psychiatrist, both at age 8 and age 12....she received psychotherapy at age 8 for one year becasue they thought she was imagining illness, but it turned out to be Graves' Disease, by the time she was diagnosed it was extremely advanced and was affecting most of her organs, she also had protruding eyeballs and a very large goiter before they finally believed her that she was sick.  At twelve with the mystery illness that was the start of all these symptoms she was thoroughly evaluated by pediatric psychiatrist both while an inpatient at the hospital and later as an outpatient....he saw her both with me and also while alone.  He did not believe there was any sign of psychological trauma or precipitating event that would have led to the sudden and severe physcial symptoms she was having....for insurance coding he used conversion disorder BUT emphatically told me he believed it was a physical problem that would eventually be diagnosed...the only sign of depression he could note seemed to be
  related to her undergoing many invasive and painful tests, including barium swallows and colonoscopy, and two hospitalizations, and a host of other tests....she was disheartened that for the second time in her life it seemed that no one believed that she was really sick, yet she knew she was.  He told me that he was certain she would eventually receive a medical diagnosis.  She had many positive test results....including a positive for Lyme Disease, positive ANA, positive antidsDNA, two bulging discs, positive for sinus disease on brain MRI.  The Graves Disease has been well documented since age 8, and she has been used as a case study by the endocronologist and participated in a research project looking for genetic factors.  She has virtually every specialist you can think of and is sick to death of doctors and hospitals and tests....which is why it was really significant to me that she asked to go to hospital with her chest  pain....it must have been remarkably bad.  Even as a young child she was constantly
  sick...she developed infecttions at the drop of a hat, suffered a balance disorder, had constant ear infections and horrible skin infections....her eye got so badly infected within a 12 hour period they told us the infection was heading to the brain, we got her to the hospital just in time.  They called it an immature immune system.  So she went from immature immune system to Graves....she also has several medication allergies and has had anaphalactic reactions requiring IV Benedryl....somehow it seems to make sense that all this might be related to an immune dysfunction or autoimmune illness.  Currently the chest pain and shortness of breath are the predominant symptoms...it is interfering with her very active life.  She has a good attitude, and the only thing she gets upset about is when she gets sick....she doesn't ever want to get special treatment or anything....even though she has a documented learning disability she has struggled and overcome her problems without resorting to all the special adjustment
  she was allowed to utilize...now she is in honors classes and although she just recently was retested and still qualified as learning disabled doesn't even want her teachers to know.  She is highly motivated and just wants everyone to treat her as normal.
  Sometimes I worry because even when the chest pain starts hurting she refuses to stop....only when it gets so bad she can't breathe will she stop.  The psychiatrist said she needed no psychiatric medicine since she appeared to be both well oriented, and motivated, and just wanted to get better....since he didn't put her on medication the insurance company refused to pay his bills, but that was ok, I paid for them and even took her for followups because just as you suggested, I wanted to leave no stone unturned.  I don't know how to react when she gets the chest pain.  Taking ibuprofen helps....taking ibuprofen prophylactically helps prevent it but I have been on long term NSAID therapy myself for connective tissue disease and it has resulted in gastric ulcers, and now my colon is raw, red and bleeding as a result of NSAID use....I don't want that to happen to her.
  Number one...I want to make sure it is safe for her to exercise as much as she does despite the chest pain and shortness of breath....she is aiming for Junior Olympics and is swimming hard four to five times a week.  Number two...if there is any way to cure or prevent the chest wall pain, I would like to know.  Number three....how do I know when it is bad enough to go back to the hospital?  It seemed really bad the last time and she was having such difficulty breathing and seemed in immense pain.....but I don't like to use emergency services for chronic problems, only for true lifethreatening emergencies.  Thanks again for your help  Dee
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Dear Dee
If it is in fact chest wall pain, Tylenol may be easier to handle than the NSAIDs and is often as effective. If she is having lots of chest pain and shortness of breath [regardless of the cause] it may be impractical to pursue competitive sports. If she is having severe pain and you are worried about her, it is reasonable to take her to the emergency room. What connective tissue disease do you have?
I hope this has been useful. Feel free to write back with further questions. Good luck.
Information provided here is of a general nature.  Specific diagnoses and treatments can only be made by your doctor.  If you would like to be seen at the Cleveland Clinic, please call 1-800-CCF-CARE for an appointment with a cardiologist at Desk F15.