Hello friends and family,
We wanted to take a moment to give each of you an update on Tyler's health. Many of you know that he started having what we thought were gastro-intestinal problems last September. His symptoms began with constant belching accompanied with lower abdominal pain. Over the following months, his symptoms continued and worsened through multiple trips to the ER, an overnight hospitalization, one scary episode when he blacked out, and every GI test you can imagine, which all showed that there was really nothing wrong with him other than occasional gas, constipation, and acid reflux. When his symptoms started to improve over Christmas break, we began to wonder if they were emotionally based, for there seemed to be no other explanation.
At the beginning of March, our entire family got strep throat. Along with the strep, Tyler's burping started up again full force. (During January and February, they had continued, but at a decreased frequency.) We wondered if it was a reaction to the antibiotic, so we switched antibiotics. After the antibiotics were completed, his strep symptoms were long gone, but the belching and abdominal pain were worsening. Over the last six weeks since then, he has shown a steady decline. The belching has become progressively louder, more intrusive, increasingly painful, and accompanied by a jerking motion of his neck. Eventually, he began missing more school than he was attending. When he did attend school, he had to spend much of the day in the nurse's office because he was either so distracted by his own belching that he couldn't concentrate or he was so loud that it was becoming a disturbance in the classroom to the other students.
Last Monday, we met again with the GI specialist, who immediately noticed the difference in Tyler's "belching" and said he had never seen anything like it and it no longer looked like a GI problem. He suggested we take him to a pediatric neurologist because the belching might be a tic. On Wednesday, we took him to the pediatrician to discuss a neurological referral. When she walked in the room, we could see the look on her face change. Though she had seen him only three weeks earlier, she quickly observed, "This is different. This is much worse. This looks like a tic," she said. "He can't even go to school like this," she continued. We were so relieved that doctors were finally recognizing what we've been trying to tell them for months. Something is wrong with our son.
We were told that a pediatric neurological referral may take several weeks, but the pediatrician promised to do her best to pull whatever strings she had to get him in sooner. A new but very dear friend of ours happened to have connections with the head of pediatric neurology at Children's and arranged for us to get in to a neurologist, Dr. Chrusciel, the very next day. (Praise God, for that was a true divine connection, and we are so grateful!) Dr. Chrusciel was wonderful. She did a really thorough job of explaining tics, their possible causes, and available treatments. She was also very open to our input and spoke to us in a very understandable way.
Tyler's condition boils down to this: Dr. Chrusciel really thinks Tyler has Tourette Syndrome. There is also a very slim chance that his tics are caused by a strep infection. Believe it or not, strep causes tics in a small percentage of the population. Once the strep is treated with antibiotics, the tics leave. We did bloodwork and found that he does have an elevated strep count, but probably not enough to require antibiotic treatment. Strep is unlikely to be the cause of Tyler's tics for several reasons, including the fact that he's had the tics for over eight months (long before he contracted strep in March) and he's been on 3 rounds of antibiotics during that time. So he may still do a round of antibiotics to rule out strep (she's consulting another doctor to determine that), but she feels it's not very likely to be the causal factor in his tics. Tourette's isn't diagnosed until a child exhibits tic symptoms for a year, so he hasn't been diagnosed with Tourette's yet, but it really looks like that is what we are dealing with.
Tourette Syndrome is basically a problem in the brain that produces tics elsewhere in the body. The tics are involuntary movements and/or sounds that are outside of the person's ability to control or prevent. Tourette's usually first appears in kids around Tyler's age, worsens through adolescence, and improves in late teens or early adulthood. Adults with Tourette's are usually able to live normal lives, often without the assistance of medications. Tyler's tics are particularly bad because, unlike a twitching eye or an urge to touch things, Tyler's tics cause pain, interfere with his ability to live his normal life, and are a disruption to the people around him.
There are a large variety of medications that are used to treat Tourette's and tics. They range from less effective with few side effects to highly effective with high occurrence of side effects. It's just a matter of finding the right combination that works well for Tyler. The problem is that we have no idea how long it will take to find the right meds. So far we have tried 3 different medications in the last week, and none of them have worked for his tics at all. It is very discouraging for him and us.
During the last week, we have continued to see a steady decline in his situation. His tics are getting louder. His jerking often involves his whole upper body, not just his neck. He struggles for 3-4 hours at night to stop convulsing enough to just get to sleep. Then he often wakes during the night with the tic and has to try to settle down once again. He doesn't want to eat anything at all because eating tends to make the tics worse. His pain, which used to be limited to his abdomen, has now extended to neck pain and headaches from the constant jerking. We have also come to the realization, quite sadly, that until a good medication is found, he can't go out in public. He causes a big disruption, and we don't want him to become embarrassed or ashamed. School is absolutely out of the question for the time being. (The school is being wonderful in how they are dealing with it and offering assistance.) Our previous family favorite outings to restaurants or movies are completely out of the question. We can't even go to church right now.
Last night, we tried a new medication for Tyler, hoping it would help the tics and help him sleep. However, it had the opposite effect on Tyler. He became highly agitated and his tics worsened to the point that it became difficult for him to even catch a breath between the ongoing bursts of tics. We took him to Children's ER, and he has been admitted to the hospital until they can find a medication that will calm him and reduce the tics. Right now it is 8:00am and he has yet to fall asleep and is continuing his painful bursts of tics. He is miserable and hurting.
Needless to say, we need prayer. Tyler needs healing. Many of you know that healing is a gift and ministry God often uses our family in. We see healings and miracles happen regularly when praying for the sick and doing evangelism. It can be hard at times to see so much happen for others when you pray for them but don't see it when you pray for your loved ones.
We know there is a battle. We live in tension. We know God is good and healing is his will. We are grateful for however healing comes. We won't back down from evangelism or ministering healing to others just because Tyler is sick, because we believe this is the call of Jesus for every believer. We also believe if our family is going to get hit this hard, we will hit back just as hard. This has made us more determined to go after the commissioning of Jesus. We will celebrate all the healings we see, mourn when we don't see them because we know we will be comforted, and continue on no matter what. We have a deep conviction and we know the kingdom of God is at hand no matter what. Our job is to simply look, listen, and respond to Jesus, and not let sickness or circumstances blur our vision to follow Jesus. So we will continue doing outreaches, living out our day to day life responding to Jesus' commission and training others. We don't believe we earn something for doing this, and we know we will all suffer in this world, but we don't stop responding to Jesus' commission. We are learning to lean into the pain and learning to mourn, knowing we will be comforted.
If healing for Tyler comes instantly through a miracle, we would be grateful and in awe. If God desires to bring healing to Tyler through doctors and medication, we will be grateful! Please pray that we find the right combination and dosage of meds that works for him soon. Pray that the expected side effects would be non-existent. Also, please pray for God's comfort and encouragement during this time. That we wouldn't give room to hopelessness, fear, or discouragement. That we would continue on with God as our focus, not Tourette Syndrome. That all eight of us would come to know the goodness and mercies of God in new and amazing ways every day. That we would continue to have the needed support of the medical community, our faith community, and our family.
We thank you all so much for loving us. We believe in the power of prayer, and we know that each of you care for us and are willing to stand with us as we journey through this situation. Thank you for loving our Tyler and our family.
Much Love and Blessings,
Brian and Jeanine Blount
PS-If you want to see what Tyler's tics are like, here's a short clip of what he lives with around the clock: http://www.youtube.com/watch?v=7jVKEiqGkJk. Also, Jeanine has started a blog. If you want to read it go to http://simplyjeanine.blogspot.com
Sent from my iPhone
Brian Blount
Praying for you all.
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