We had a neurologist appointment yesterday. The first round of results from the muscle biopsy came back normal. She has some bigger fibers and smaller fibers than normal but that could just be due to lack of using the muscles, so he is saying that it is normal for Lila. We have to wait for the rest of the results to make a game plan going forward but we are tentatively thinking (if everything is normal) that we will send all her results to the mayo clinic for a fresh new look. We are also going to repeat her EEG next week to see if her medicine is helping at all or if we can take her off it.
Our doctor told us that he thinks that what is going on with Lila is definitely genetic. He believes that it is in the sporadic genetic category though and not necessary doomed to happen to future children.
He also told us that if Lila doesn't improve she will be diagnosed with Cerebral Palsy. That was quite the blow. He doesn't think that she has any progressive diseases, just that she will remain static. How awful. He said that there is some hope that she will improve but obviously as every month passes some of that hope is diminished.
The idea of my beautiful girl in a wheelchair not able to see or talk is quite simply more than I can bare.
As always we are praying for a miracle....
3 comments:
How frustrating to still be searching for a diagnosis and plan of action for sweet Lila. I hope a fresh pair of eyes will help. Love to you.
I don't know if you remember Mike Kernodle (a teacher from East) but he was losing lots of weight and they were doing all sorts of tests to figure out what he had and could not find anything out. Finally, he ended up flying back to the Mayo clinic and they had tests done and the Mayo clinic was able to get an accurate diagnosis and figure out what he was suffering from. It is an amazing place, so hopefully, if it comes to that, the doctors there will be able to help Lila. Lila will be in our family's prayers.
It is so hard not having a diagnosis, even if it doesn't change the treatment. We are in the same boat as far as needing to get solid answers. Its draining, discouraging and hard. I hope you get more evidence to lead you in a direction for treatment.
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