We had an appointment with Katha's neurologist on Thursday. Katha was having a bad day and was finally able to show the neurologist her Cataplexy. However, she also looked up really well. The neurologist was extremely pleased with Katha's progress since starting the medication. She is walking better, even her reflexes are better. She said that she believes that mentally Katha is stable and she doesn't need to see us for a year.
The bad news is that she is transferring hospitals and is not allowed to take any patients with her. Which means, that by the time we go back (as long as there continues to be no seizures) we will have a different neurologist. The reason this is bad news is this is the one doctor Katha would be excited to go see. I hope her new doctor will be as awesome as this one was.
Katha has finished school for the year along with Dominik. On Wednesday Katha and I went on her field trip. She had a lot of fun, but is definitely excited to be done school.
She has also been getting up really early and not going to sleep again until late. I thought this was straightening itself out as insomnia is a side effect of the medication like lactose intolerance which has been going away slowly but surely.
Katha is able to eat pizza again, along with pancakes and bagels. She is a very happy girl. I would like to try ice cream, but am a little worried on how her stomach would react. However, if we could do this, she wouldn't really have any eating restrictions anymore. It would make her very happy.
We leave for Manitoba on Friday or Saturday. Last year right after we got back from Manitoba was when they started testing for NPC. It will be the first time Don and Patty have seen her since she was diagnosed. We usually would let them come here this year, but we figure this will probably be the last time Katha will be able to make such a long trip, so we'd better do it while she still can.
Onto the symptoms:
Enlarged liver and spleen: Still the same, liver is good, spleen is slightly enlarged.
Ataxia (unsteady gait): Katha is still Katha. She falls down, and she gets back up. Her walk, I don't think, will ever be normal, but she makes do.
Dysarthria (slurred speech): Katha has good days and bad days. Sometimes, people seem to understand her, other times I have to translate for her.
Dysphagia (trouble swallowing): She still chokes on water. She has an appointment in mid-July with the people who will be doing a swallowing assessment.
Basal Ganglia (holding limbs at awkward positions): She still does this and still, unless your looking for it, I don't think you would ever notice it.
Dementia (memory loss): Same. We're continuing to play memory games, but her memory will still slip a lot.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This happens quite a bit, especially when she is tired.
Sleep related disorders: Like I said before, she has trouble going to sleep and is often up early
Sensitivity to touch: Katha doesn't show much signs of this other than the puppy. His general fluffiness doesn't sit well with Katha, but she does try. She still likes to cuddle Oreo if he is wrapped up in a towel or something.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has been doing fairly well with this. She looked up at an air balloon the other day and said there was two of them. So, even when she can look up, she sees double. She FINALLY has an opthamologist appointment in July.
Hearing: I still wonder if she has sensitive hearing. When I get the opportunity I will have this tested.
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