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Friday, November 2, 2012
Thursday, November 1, 2012
The Annual MRI
The Annual MRI…
Every year Claire has an MRI to check the development of her brain and to see if there are any changes that may lend an answer to Claire’s condition. I must admit that if it were up to me, Claire would have had a zillion MRI’s in the first year of her life…I was hurting and confused and wanting answers. Claire’s last MRI was around 18 months old and in September, 2011. The result of the 2011 MRI was that Claire’s brain had grown a little, there was some spike in her lactate levels (non-significant), and there was possible Leukodystrophy. What is Leukodystrophy…here is an excerpt from the National Institute of Neurological Disorders:
“Leukodystrophy refers to progressive degeneration of the white matter of the brain due to imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fiber. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least ten different chemicals. The leukodystrophies are a group of disorders that are caused by genetic defects in how myelin produces or metabolizes these chemicals. Each of the leukodystrophies is the result of a defect in the gene that controls one (and only one) of the chemicals. Specific leukodystrophies include metachromatic leukodystrophy, Krabbé disease, adrenoleukodystrophy, Pelizaeus-Merzbacher disease, Canavan disease, Childhood Ataxia with Central Nervous System Hypomyelination or CACH (also known as Vanishing White Matter Disease), Alexander disease, Refsum disease, and cerebrotendinous xanthomatosis. The most common symptom of a leukodystrophy disease is a gradual decline in an infant or child who previously appeared well. Progressive loss may appear in body tone, movements, gait, speech, ability to eat, vision, hearing, and behavior. There is often a slowdown in mental and physical development. Symptoms vary according to the specific type of leukodystrophy, and may be difficult to recognize in the early stages of the disease.”
As you can imagine, I took the time to look up each of the disorders listed in the description, and of course none of them are pleasant or something you “want” your child to have. Waiting for the 2012 MRI was a test in patience. Most days I didn’t give it a thought, but on the bad days…well it’s hard to not think about what Claire may or may not have.
Claire’s MRI was on October, 17, and let me tell you…Claire was having a rough day of seizures and it was scary to step foot into OHSU because I always have a nagging feeling we will never leave once there. I know that is a silly thing to fear, but after the amount of time we have spent there, and knowing the fragility of Claire it just sometimes consumes my thoughts. The MRI itself went pretty well. The anesthesiologist didn’t give Claire quite enough sedation to keep her asleep through the whole test and as Claire started to wake up she had a seizure and they had to repeat the last portion of the MRI, which of course was the longest portion. Claire mad it to recovery and instead of the sedation giving Claire a break from her seizures, it just caused extra seizures as Claire fought harder to wake up from sedation. Claire had a seizure in recovery where her oxygen saturation went down to 22 and let me tell you, I thought they were going to admit her. Thank goodness I got them calmed down and let them know her saturations would get better as the sedation wore off.
Friday, October 19…missed a call from Claire’s neurologist. I was so bummed but I was in the middle of changing Tristan’s diaper when the phone rang…not much I could do at that point. Dr. Wray left me a message stating that Claire’s MRI showed no real change and quite frankly he was surprised and stumped. Because I am overly protective and cautious about all things Claire, I emailed Dr. Wray just to confirm the findings and to make sure I had understood his voicemail correctly, and I had.
So…no change is actually really good news! For now, though there was no positive change to Claire’s brain, there was also no negative change and the Leukodystrophy conversation can go away (at least for now). We of course delight in the Lord for keeping Claire’s brain as healthy as possible right now. We are in the midst of a drug wean and the hope and prayer is that Claire will be less doped up and be able to learn. Who knows…maybe by her 2013 MRI there will be change and it will be GOOD!
Thank you all for following our story and for praying for Claire. The love and support is wonderful.
James 1:12- Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.
Every year Claire has an MRI to check the development of her brain and to see if there are any changes that may lend an answer to Claire’s condition. I must admit that if it were up to me, Claire would have had a zillion MRI’s in the first year of her life…I was hurting and confused and wanting answers. Claire’s last MRI was around 18 months old and in September, 2011. The result of the 2011 MRI was that Claire’s brain had grown a little, there was some spike in her lactate levels (non-significant), and there was possible Leukodystrophy. What is Leukodystrophy…here is an excerpt from the National Institute of Neurological Disorders:
“Leukodystrophy refers to progressive degeneration of the white matter of the brain due to imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fiber. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least ten different chemicals. The leukodystrophies are a group of disorders that are caused by genetic defects in how myelin produces or metabolizes these chemicals. Each of the leukodystrophies is the result of a defect in the gene that controls one (and only one) of the chemicals. Specific leukodystrophies include metachromatic leukodystrophy, Krabbé disease, adrenoleukodystrophy, Pelizaeus-Merzbacher disease, Canavan disease, Childhood Ataxia with Central Nervous System Hypomyelination or CACH (also known as Vanishing White Matter Disease), Alexander disease, Refsum disease, and cerebrotendinous xanthomatosis. The most common symptom of a leukodystrophy disease is a gradual decline in an infant or child who previously appeared well. Progressive loss may appear in body tone, movements, gait, speech, ability to eat, vision, hearing, and behavior. There is often a slowdown in mental and physical development. Symptoms vary according to the specific type of leukodystrophy, and may be difficult to recognize in the early stages of the disease.”
As you can imagine, I took the time to look up each of the disorders listed in the description, and of course none of them are pleasant or something you “want” your child to have. Waiting for the 2012 MRI was a test in patience. Most days I didn’t give it a thought, but on the bad days…well it’s hard to not think about what Claire may or may not have.
Claire’s MRI was on October, 17, and let me tell you…Claire was having a rough day of seizures and it was scary to step foot into OHSU because I always have a nagging feeling we will never leave once there. I know that is a silly thing to fear, but after the amount of time we have spent there, and knowing the fragility of Claire it just sometimes consumes my thoughts. The MRI itself went pretty well. The anesthesiologist didn’t give Claire quite enough sedation to keep her asleep through the whole test and as Claire started to wake up she had a seizure and they had to repeat the last portion of the MRI, which of course was the longest portion. Claire mad it to recovery and instead of the sedation giving Claire a break from her seizures, it just caused extra seizures as Claire fought harder to wake up from sedation. Claire had a seizure in recovery where her oxygen saturation went down to 22 and let me tell you, I thought they were going to admit her. Thank goodness I got them calmed down and let them know her saturations would get better as the sedation wore off.
Friday, October 19…missed a call from Claire’s neurologist. I was so bummed but I was in the middle of changing Tristan’s diaper when the phone rang…not much I could do at that point. Dr. Wray left me a message stating that Claire’s MRI showed no real change and quite frankly he was surprised and stumped. Because I am overly protective and cautious about all things Claire, I emailed Dr. Wray just to confirm the findings and to make sure I had understood his voicemail correctly, and I had.
So…no change is actually really good news! For now, though there was no positive change to Claire’s brain, there was also no negative change and the Leukodystrophy conversation can go away (at least for now). We of course delight in the Lord for keeping Claire’s brain as healthy as possible right now. We are in the midst of a drug wean and the hope and prayer is that Claire will be less doped up and be able to learn. Who knows…maybe by her 2013 MRI there will be change and it will be GOOD!
Thank you all for following our story and for praying for Claire. The love and support is wonderful.
James 1:12- Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.
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