Find a Cure For Tyler

Cure Tyler, Stop The Attacks!

2009-01-11T21:04:00.000-08:00

October 11,2010 (updated)

Our son Tyler, has an undiagnosed medical condition which has been going on 4 years now. He suffers with severe intermittent abdominal pain located in the upper quadrant of his stomach, in the middle, just below the sternum. We call them “attacks”.

These "attacks" occur everyday now, at least 2 in one day, and sometimes he is in pain for a 2 day period of time. The "attacks" last from 6 to 10 hours or the pain is on going through the entire day, sometimes much more painful, other times the pain is always there but not as bad. He is in pain a minimum of 16hrs in a 24hr period. The "attacks" happen at any time of day or night. There are no triggers for the attacks. We have pain medication for him. Tyler can determine how intense the attack will be as it starts. Sometimes it is so bad that we use to take him to the doctors office or the ER for more pain medication. We are now working with a pain management office and only going to the ER as needed. Unfortunately his life has pretty much come to a stop. He isn't able to do much of anything or have any kind of social life.

He has been seen by over a dozen different doctors. He has also had many many many tests done and taken many different kinds of medications for different things. We have learned through trial and error that he is allergic to somethings and some medications. Up to now all tests have come back normal or unremarkable. Recently we did discovered in a MRI a small cyst in Tyler's right hepatic lobe.

Tyler has also done testing for over 6 months towards the alternative route seeing 5 of these type of doctors. He has been on a very very strict diets, including reverse osmosis water, other water solutions, and a lot of different herbs, minerals, oils, etc. Although he eats extremely healthy (not that he was ever a junk food or drink person before), there has still been no change. We do not think it has anything to do with this diet or an herb regiment. He has not gained or lost weight through this entire time other than his regular growth pattern of a young teenage boy to a young man.

If you look at Tyler he is the picture of good health. He is physically and mentally very fit and strong. At the young age of 20 he's made many accomplishments and is a very gifted athlete, specifically as a sprinter. Tyler started attending Brigham Young University the Summer Term 08' and in Fall Semester 08' he was on the Men's Track Team. He was on a medical release from BYU. His goal is to one day become an Orthopedic Surgeon. He had hoping to be able to return to school and to compete in track. Unfortunately the attacks have taken over his life and have prevented Tyler from realizing his dream of attending the University and running track at this time. He is in hopes of "finding a cure", a correct diagnosis, and treatment plan.

How you can help???

Please click on the "Who is Tyler" and "Tyler's Medical History" for more information. If you have any suggestions that may help our son or have heard of someone who has suffered the same symptoms or if you are a Doctor and could possibly treat Tyler please email us at curetyler@live.com - we would love to speak with you!

I feel we have exhausted our possibilities to find help for our son here in Utah and this is why we now turn to you (the internet) for help! Thank you for taking the time to read this post. Our son Tyler deserves a chance to "Live Life" and our family is willing to do everything in our power to give him that opportunity.

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Tylers Medical History

2009-01-11T21:03:00.000-08:00

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.

curetyler@live.com
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Who is Tyler Goodwin?

2009-01-11T20:56:00.001-08:00

October 11, 2010 (updated)

Tyler was born and raised in Provo, Utah. He was a very happy baby and is to this day a happy young man. From the beginning we called him "Tyler Smiler", because he was always smiling and so happy. He has grown up to be a great person. He is always one who volunteers to help and he does it with a big smile.

He has always had very good comments from all his teachers and coaches. He is very eager to always do his best. Tyler has a lot of friends young and old, he is very sociable. Through his participation in sports throughout his life he has met many people with whom he is still in contact with. No school rival or state boundaries can keep him from friendships. He has many friends which span across the state of Utah as well as in other states. Many he has met through track.

As a young boy he started sports by playing soccer, then baseball, basketball, football, and track. It was in baseball that we finally realized that hey this kid has speed, not to mention he hits hard too. In 7^th grade he hit a record of 16 home runs, in a 8 game season, two were in the park. In 8^th grade he had a record of 19 touchdowns, in a 8 game season. He started track in 9^th grade as the football coaches at "Timpview High School" (THS) told the football players to do track. That's all it took. In 9^th grade he was the fastest kid at THS and continued to be the fastest through 12th grade. He currently holds the record for the fastest100m and 200m, and the state record for the fastest 4x100m relay.

We do enjoy having all our children involved with sports, but also we value academics, he graduated THS

with a great GPA, as well as receiving the following:

Clubs: HOSA

Educational Awards :Received

Utah State Office of Education - Career & Technical Education Skill Certificate:

Anatomy & Physiology: Medical Terminology

Anatomy & Physiology

Exercise Science / Sports Medicine

Utah State Medical Assistant Certification

Athletic Letters Received:

9^th Grade 2005 Track

10^th Grade 2006 Track

11^th Grade 2007 Track

12^th Grade 2008 Track

11^th Grade 2006 Football

12^th Grade 2007 Football

2007 All-State Utah Track 100m, 200m, 4x100

2008 All-State Utah Track 100m, 200m

Jr. @ State Track for Utah 1^st 100, 2nd 200, 1^st 4x100 (new record since 17yrs, still stands)

Sr. @ State Track for Utah 1^st 100, 2nd 200, 2^nd 4x100

Timpview High School Men's Varsity Track Team – (4yrs)

Men's Track Individual 100mm 10.72 2008 Great Southwest Classic

(this is the THS record)

Men's Track Individual 200mm 21.89 2008 Utah 4A State Championship

(this is the THS record)

Other Track Accomplishments:

4x100 Relay 42.41 Utah 4A State Record

4x100 Relay 40.68 2008 Great Southwest Classic, Albuquerque, Nm

Sprint Medley 3:43.44 3^rd2007 Simplot Games, Pocatello Id

1^st Region 4A 2006 Men's Track Team

1^St State 4A 2006 Men's Track Team

Timpview High School 4A Football Teams – (4yrs) (Nationally Ranked)

Positions-

Running Back, Wide Receiver, Kicker/Punter, Kick Return

Region & Utah 4A State Champions 2004

Region & Utah 4A State Champions 2006

Region & Utah 4A State Champions 2007

Some of you who know Tyler personally have some knowledge of his "attacks", and less of you have actually seem him have an "attack". For our family, his sister (and her family), brothers, and other extended family members this has become a serious problem and we all want to help Tyler. As a parent, it is the most heart breaking thing. You can't imagine just how hard it is to watch and try to help him not really knowing what to do. The physical pain and mental pain that Tyler goes through no one can ever understand what it is like. This has taken over his life, he can't attend the university or even work since we never know when an attack will happen.

Well yes we are may be a little bit prejudice, he is after all one of our kids! I almost feel like saying, Tyler, This is Your Life, and I guess for now it is, we just hope and pray for a better healthier pain free life for our son, Tyler. We do believe that with all your help we will be able to cure Tyler so that he will be able to have a "Life", and a life full of the dreams he so desires and he so deserves.

Tyler was attending Brigham Young University here in Provo, Utah starting Summer Term 08' and in the Fall Semester 08' he was on the Men's Track Team which he is very proud of. He was also receiving help through the UAC program at BYU because of his unusual medical issues and they have been great. He is on a medical release from BYU (and BYU Men's Track Team). However he was not been able to complete most of his classes. Everyone at BYU has been very helpful and understanding to Tyler's situation.

We want to thank all his coaches and teachers and administration at THS and at BYU, and all the doctors, nurses and other medical staff, and all of you out there who have helped and are helping Tyler.

curetyler@live.com

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