Watching and Worrying

More hard news. More difficult days. We get only glimpses of who Morgan is. Morgan was diagnosed with Infantile Spasms last month. Infantile Spasms are a very particular type of epilepsy. They look as though she is flexing her arms out and then bending forward simultaneously. They last for only 1 second but they happen in clusters, so she may have 5 to 23 spasms in a single cluster lasting for 1 to 2 seconds a piece. She started these in December. They are very hard to recognize and very subtle so it took me a little time to see her spasms before realizing they were involuntary movements. There is a couple reasons they are difficult to identify. The first is that Morgan has hypotonia, or low muscle tone in her arms and neck, so her spasms are not very pronounced. The second is that they could, and were at first, mistaken for voluntary movements done during play. But I know that seizures are a big part of her Idic15 Syndrome so I was very much on the lookout for any odd behaviors. When seeing these, I suspected they were some kind of seizure but truly hoped I was wrong. The neurologist and an EEG confirmed that they were what I feared.

They treated her with a very high dose of daily steroids and that certainly helped but did not get rid of them altogether. It was something that we could try for only a month. After that, no matter what, we had to get off them. They are not safe long-term. So we started a different drug, Topomax, to bridge her as she came off the steroids. Well, that was less than a week ago and her spasms have been increasing.

Not only increasing, but changing in nature. They have been getting longer and the look of them have been changing. When she has them she looks "frozen." It's unbelievably disconcerting. I've timed them to last up to 2 minutes. Way too long in my book. If we ever hit 5 minutes we have to call 911.

We were back at the neurologist yesterday and I'm happy with how he is handling Morgan's case. He listens to what I have to say and seems to have a certain amount of humility, freely admitting that he doesn't know everything. But he is approaching Morgan's case as a puzzle that needs to be solved. So far, it has been this type of approach that we've seen in other doctors that has yielded the best results. I hope he can find an answer for us. He did confirm that the seizures were looking more like tonic seizures than spasm. I don't like the sound of that. I don't like watching them. I don't like what they do to her.

I hate the seizures. I absolutely hate these seizures. Watching Morgan go through this is... I'm at a loss for words. I struggle not to panic every time I see her having one, which happens daily. I try to concentrate on how long they last, how many she had, what the circumstances were, all so I don't panic and loose my mind. I fear so much for her that the stress and tension has built up so that I find my jaw hurts from clenching, by shoulders hurt from tension and I seem to have trouble getting to sleep (a new thing for me, I usually fall into bed and that's that, of course until one of the little ones gets me up in the middle of the night).

I had to take Morgan in today for her 4th EEG and the nurse presented us with the "epilepsy bear." A very cute little bear donated by a certain epilepsy foundation. It was a gift made to comfort. Honestly, the angry part of me wanted to say keep the damn bear. I don't want to be a part of this epilepsy community. I have a lot of anger and sadness at times. I thanked the nurse for the bear. I know it was a very kind gesture. 

I don't want these seizures for her. I hate seeing her development further delayed, her amazing personality further out of reach. I feel so helpless. All I can do is watch and wait.