Ethan again

Not only was Ethan still gaining a tremendous amount of weight, he seemed to be sleepier all the time and his eyes appeared to be more crossed. I forgot to mention, one of his listed special needs was strabismus, which when he was at the eye institute they said that he really didn't have strabismus, it was just that the way the skin was between his eyes it just appeared that way. We kept getting more and more worried and talked with the neurosurgeon frequently about it. He kept saying that if the hydrocephalus was getting worse, he would be complaining more. But what they didn't understand was that he was so used to pain from however long ago that it had started at the orphanage, and not having a Mama to help take care of him when he complained, he didn't complain about pain at all. His pain tolerance was amazing. Before his detether the NS said that he was probably in some discomfort. After surgery he said that Ethan had to have been in quite a bit of pain. Finally Ethan exhibited enough symptoms that they NS decided to place a shunt. September 5th he had a shunt placed. Again, the NS said that the pressure was higher than he expected because of the symptoms that Ethan had.

That night after surgery Ethan was galloping down the hall. We were amazed at the difference that we saw. He was speaking in more complex sentences, had more energy and stamina that before. A friend of mine commented a week or so later that you could see his eyes. Before his eyes looked more like slits, after the shunt was placed his eyes were wide and alert.

After the shunt was placed Ethan began to eat a more normal amount. Prior to the shunt, he acted like he was starving all the time. You could never feed him enough and wouldn't let you delay giving him food for even a few minutes.

Ethan seemed more awake . . . for a while. I continued to feel that something was wrong. He was 5 years old and would fall asleep every time he was in a vehicle. he would fall asleep sometimes several times in the morning, then take a good nap in the afternoon. After a lot of research on my part, I shared my concerns and what I thought might be wrong with the neurologist and they squeezed us in. I was right. Ethan has narcolepsy.

He has all of the classic symptoms, excessive daytime sleepiness, cataplexy which is where he will get excited, scared or laughing and he will loose muscle control and flop down. If he is standing he might flop down to the floor. He has disturbed nighttime sleep and night terrors, possibly more symptoms, but he really doesn't know how to tell us if he did. We started medication that has been adjusted about once a month from October until now in March.