Hi Stephen,
I want to give you an update on how I am doing. I have been healthy for a little over a month now! I was admitted to the hospital (neurological department) on 12/10/2008 because of KLS. I stayed about 5 days in the Hospital. Before the stay, my mom had talked with a KLS mother that heard of a KLS girl trying Cytomel which prevented her from going into an episode. During my stay my mom asked the doctors to put me on Cytomel which they did. By the 2nd or 3rd day of the stay I slowly started to “wake up”! I was released from the hospital 5 days later and have been healthy ever since. I have had minor setbacks but much less severe. I believe that the Cytomel is helping me. This past month I have done more things than I have in the past 2 years. I believe the Cytomel is keeping me in reality, keeping my KLS symptoms light, letting me function through the day, giving me more energy, and letting me live the life I deserve. I feel better than I have in years. I feel like my body is on schedule now and my bodily functions (perspiration, appetite, digestion, autonomic system) are more normal and controlled. They aren’t nearly as out of whack as they were before the Cytomel. I was taking 10 mcg a day and just about a week ago I raised it to 15 mcg a day. I feel better on 15 and am able to do some things throughout the day and am not fighting to stay healthy. I think I’d even do better on more and would be able to get my full life back meaning school or work.
I am being monitored by a doctor for this medication. This medication is used to treat hypothyroidism. My blood work showed my thyroid functioned normal. However, I don’t believe it does function normally. The docs have said MRI scans are normal, CAT scans normal, blood work normal, EEG normal, etc. But come to find out by looking into the brain, they found a 15-30% loss of blood going to the thalamus region of my brain. I have learned that just because a test shows normal doesn’t mean the function is normal. My mom had read that it is possible for blood work to show normal thyroid levels but the hormones may not be metabolizing in the cells properly
and that can’t be measured.
I have a severe case of KLS (meaning my episodes are very frequent and last long). So for me to be awake for over a month, is a miracle. I know that many KLS patients are treated as psychological patients, but if your child is admitted to the hospital make sure they are in the neurological department if they have to be there. Of course, they should be at home with their families when ill but if they are at a hospital when ill hopefully they can stay in the neurological department. The neurological department was the best stay I have ever had in a hospital. I wasn’t locked up and treated like I was choosing to behave like that. They treated me how a sick person is supposed to be treated. They did have a sitter which was understandable but I was able to go to the bathroom by myself, they didn’t make me wake up at 7am to take behavior classes, and they let me walk around the hospital (with the sitter), which they do not allow in the psych wards. The first place a KLS person needs to be is at home with their parents but if they are in the hospital the neurological place is the next best place to be. I have a medical power of attorney for my mom or dad to be able to make decisions for me if I should fall sick.
My Beliefs: I believe that KLS is related to a comatose state and is possibly related to Myxedema coma. Cytomel treats hypothyroidism and Myxedema coma is a severe case of hypothyroidism.
Hope all is well!
Alanna
