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Tyler's Story

 

I wanted to share our story with you.  My husband Shaun and I have been married 25 years. We have 2 older sons, Scott (age 24) and Josh (age 21) and our youngest son Tyler (age 6). Tyler was born following 12 years of prayer after we had been told that we could not have any more children.  We feel that he was a miracle and, of course, he is adored by his older brothers. Tyler was born healthy and went everywhere with us. He was exceptionally smart and had amazing fine motor control- at the age of three he could recite and write all of the letters of the alphabet and many numbers. He loved to read books with us and write letters and color. 

    Then, on September 11, 1998, when he was 3 1/4 yrs., Tyler began to act different-we thought he had an ear infection or the flu.  He just wasn't his usual happy self-he was a little bit cranky and stuffy for 2 days and on the 3rd day he seemed to lose his balance.  He fell several times, but he laughed about it.  I called the pediatrician, who had me check for neck stiffness and several other signs of meningitis, but all were negative.  An appointment was made for the following day, Monday. During that visit, I was told that Tyler most likely had a virus and to just observe him. Two days later we were back at the office with a very lethargic child who was not eating or drinking. His eyes were glazed over and his color was very pale. The pediatrician wanted to perform a spinal tap in the office, but called the hospital emergency Room first and spoke with Dr. Ben Guedes, the pediatric intensive care pediatrician who insisted that we come to the ER for a CAT scan first.  When he saw Tyler he was very concerned, although the initial CAT scan was inconclusive. At this point, Tyler was not drinking, eating, walking, talking and was not reactive to light, touch or sound of any type. He was a slight step above comatose. He was admitted to the pediatric intensive care unit for what would become a 3 week stay. Initially, Dr. Guedes gave us no hope. Of course, we stayed with our son in the hospital and I slept in the bed with him, snuggled up to him, holding him close as if that would prevent anything bad from happening. I soon found that not to be true. 

    The next day Tyler had the first of 14 MRI/MRV studies-he was so out of it they did not have to administer any sedatives to perform the MRI. My husband and I sat in the small waiting room and prayed and cried.  During that time we actually were embraced by a sense of complete peace from God- we knew at that point that He was in control-not us- not the physicians.  We were ready to accept whatever God had for us and for our precious son- even if His plan meant permanent disability or even death. For some people that is hard to understand, but I am sure some of you will understand our feelings. Tyler survived the next 2 days and we were told that he would live, however, the physicians could not predict the outcome. After 6 days, Tyler was diagnosed with meningitis and encephalitis, along with 3 blood clots in his brain. He had EEG's, MRIs/MRVs, ABR, CAT scans, X-rays, spinal taps, Echocardiograms, pain meds, blood tests and more IV lines than I want to count. There was immediate concern about the blood clots moving to his lungs/heart and we were told that it was good that the clots were located in his brain-how could that be good? Further testing revealed that Tyler had experienced a deep vein thrombotic stroke and the prognosis was not good. We were told that Tyler may never walk or talk again. My husband and I cried and prayed all night long.  Tyler's brothers were as heartbroken as we were and family and friends were in shock. Tyler was not improving and blood tests revealed that he has antiphospholipid syndrome (APLS) which is a blood disorder that causes the body to produce blood clots.  It is very rare for a young boy to have this disease without an associated autoimmune disease such as Lupus (for which he tested negative).  His pediatric hematologists had seen only 1 other case prior to Tyler's case and that was in medical school 20 years ago. (Typically APLS affects women of child bearing age and may cause miscarriages.)  Friends and family prayed and we continued our vigil, asking God for a healing. 

    We began to see some signs of recovery-Tyler began to track people with his eyes and smile weakly. Finally, Tyler talked-slow and slurred-but it was my baby's voice. He said 10 words the first day, ending with the words any Mom would long to hear-love you. His speech was sometimes not easily understood- but we knew we were on the road to recovery!  Several days later Tyler walked for the first time in almost 3 weeks-very wobbly and dragging one side of his body. He began to eat and drink, started laughing and giggling-Praise God!  We were released from the hospital on aspirin therapy only to return 4 days later.  Tyler's neck was stiff, he was vomiting and his eyes were crossed.  There was concern that one of the remaining blood clots had moved, but tests revealed this not to be true. Tyler underwent many more tests and nothing found could reveal an answer.  One of his eyes straightened out, but one eye remained crossed during our week long stay in the hospital. After consultation with a pediatric neuro-ophthalmologist Tyler was fitted with glasses pending surgery to pull his eye back into place. He had outpatient OT and PT for 4 months and a speech evaluation showed that he did not need therapy. His fine motor skills were lacking-he did not even want to pick up a pencil/crayon for over a year. He could barely draw a line and coloring was like torture for him. 

    We saw some behavioral changes in Tyler which we attributed at first to steroid withdrawal.  He had been on steroids in the hospital to reduce brain swelling.  Tyler would have fits of rage where he would throw things, bite, scream, kick, etc.  Prior to the stroke, he was a very active, sweet little boy. During these fits of rage he was very strong and I experienced his wrath many times.  We began to avoid public places for fear of an attack of rage. We experienced many looks of disgust and disapproval from people who had no idea what Tyler had been through and I am sure that they thought he was just having bad behavior. These attacks were uncontrollable and lasted for about 10-15 minutes after which Tyler would be drenched in sweat and weak and very sorry for his behavior.  No matter what we tried (discipline, bribing, ignoring) he could not control himself. Tyler was afraid of taking a bath, haircuts, certain foods, certain people (especially anyone in a white coat), new situations, etc.  His immune system was suppressed so he got colds easily even though we did not go out often.

    After a year I began to correlate his behaviors with milk and then, sugar consumption.  I read an interesting article about cerebral allergies to milk and wheat in children who have been diagnosed with autism. I figured that autism is a brain disorder and that it wouldn't hurt Tyler to take him off of milk (then sugar) even though he loved milk. The change in his behavior has been phenomenal. He reacts mostly to sugar (within 10 minutes of intake), however we also limit his milk to about 4-5 oz. per day. He never had any reactions to food prior to his stroke. A friend at Tyler's preschool tested the milk diet with her autistic son and his behavior changed within 2 days. 

    There is so much more to our story, but I fear this is already too long.  Today, Tyler is completely healed, his APLS is in remission and a pediatric neuroradiologist who reviewed his case could not see any evidence of his stroke on his last MRI/MRV. She said she would not have ever believed that Tyler had had a stroke until she saw how bad his brain looked on the initial tests. Tyler is in first grade and is working above level-his handwriting is beautiful and he is reading very well. More importantly, he again loves to read, write and color and is a joy-filled precious gift to us. His eyes are back to normal (95 to 1 odds) and he does not wear glasses anymore. He no longer drags one side of his body and last year in Kindergarten he won several ribbons during field day, including 7th place (out of 56 children) for the 50 yard dash.  Tyler continues to amaze all those around him, especially us, with his progress, attitude and happiness. Most of all we are amazed at God's grace and through this ordeal we know, 'We can do ALL things through Christ who strengthens us'. We continue to keep each of you in our prayers.

 

Thanks-

 Marcy G. O'Brien

 

 

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