Tylers Medical History

October 11, 2010 (updated)

Tyler's "attacks" occur every day now, usually twice a day or lasting for a 2 day period with the pain never really subsiding, but usually the pain lasts 6 to 10 hours. He is in pain a minimum of 16hrs in a 24hr period. The "attacks" happen at any time day or night. They can happen when he is out with his friends at a movie, or just hanging out doing nothing, at church, at school, even during a football game, or track meet. There is no commonality, or food or drink, event, or person(s), which trigger the attacks.

We have pain medication for him. Tyler can determine how intense the attack will be as it starts. This is how I know just how much medication I need to give him. We used to (approx 2 times a month) as the attacks were worse, take him to the doctors office or to the ER for stronger medication etc. We are now keeping him at home as we feel the concern and care he is getting is more of none caring and disbelief that there is truly a problem. His condition over time has continued to get worse, some stronger attacks as well as more often occurrences. It is very difficult for him both physically and mentally. It has become a serious problem which has impacted his life in an adverse way. Unfortunately his life has pretty much come to a stop. He isn't able to do much of anything or have any kind of a social life.

Tyler describes his “attacks” as coming on sometimes slow other times very hard. He describes it as sort of like a hot serrated knife stabbing and twisting, it is not a constant pain. The pain is severe for a time then begins to subside, then starts up again to a hard pain and continues as such. Depending of the severity of the pain, amount of pain medication, and time of day of the attack, his recovery time is always different for recuperating.

During an attack Tyler’s breathing gets almost to a hyperventilating point, it becomes hard to breath, he holds his breath sometimes to help with the pain, he rocks bank and forth with pain (the doctors keep telling him to breath slowly, and stay calm, but it is so difficult for him because the pain is so intense). His abs get so sore and tight. He sweats a lot and feels sometimes like he is going to pass out from the pain. We give him large ice bags throughout the attack to help with the heat. We give him water with ice, and food so he has something in his stomach. He also gets itchy sometimes but we believe it is from the pain medication, we give him an allergy pill for this. He sometimes feels like he may throw up, but I believe only due to the pain medicine. This is an all day or all night event for us. During these attacks his blood pressure and heart rate go way up, and his oxygen goes way down. This of course concerns me, as I know he should be monitored to keep his vitals in check.

Tyler does not have fevers, throwing up, dizziness, constant diarrhea (although now after his gall bladder removal he does get diarrhea and takes one packet of cholestyramine for this but not always or regularly), no constipation, weird eating habits, no drugs, no drinking alcohol-coffee-tea, no weird pills or powered or otherwise mixes for enhancing his athletic abilities, no steroids, no weird sicknesses, no weird colds, no weird flu (doesn’t get sick very often), no sex, no steady girlfriend, not been out of the country, does drink very limited drinks with caffeine like soda pop etc. but not often, no blood pressure or heart problems.

He has been seen by over a dozen different doctors. He has also had many many many tests done. Tests on blood, urine, MRI's, CT scans, X-Rays, ultra sound, 2 endoscopy's, colonoscopy, food and other allergy tests, stress and psychological tests, as well as different GI problems testing for Porphyria, h-pylori, ulcers, gall bladder stuff, candida, crones, other digestive diseases, also kidneys, liver, pancreas, abdominal migraines, etc. His bowel are normal (except for sometimes loose or diarrhea only since the removal of his gall bladder), no heart burn, checked for pinching of the small intestines. Also biopsy's from the stomach and colon. He does at times have blood in his stool. Also tested for parasites, giaradia, salmonella, shigella, and campylobaeter.

Tyler has had removal of his gall bladder and appendix, and an exploratory surgery. Most recently he has had a Meckel Scan, Camera Pill, x2 MRI's/Brain-Neck, MRI/Spine, and x2 EEG's/Brain. Recently one MRI did show a cyst in Tyler's right hepatic lobe.

Tyler has taken many different kinds of medicines for GI problems, 5-HT receptors of the brain and pain receptors that may not be working right, and other medicines. We have found that he is allergic to some of these medicines.

So far most tests show everything as normal, or unremarkable. I keep saying that perhaps the normal, isn't the normal for Tyler. His body maybe different, I think this is the case, Tyler is different from others. Our doctors here in Utah have suggested that we take Tyler out of state to find a team of doctors willing to take his unusual case.

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