Well, we had an appointment today. It was with ACETS, which is a communication device that Katha can use as her symptoms get worse. It will be a great help but this was just the first step in several. All of which we're hoping to complete by the end of June.
So, Katha has her medication and the pharmacist assured me that she has never heard of anyone being denied coverage after getting on the compassionate grounds program with any medication, not just this one. Which was great to hear that it's more than likely that we won't have to worry about this medication again.
We talked briefly to the doctor about trying medications with the Zavesca. However, because there has been no research done on how anything else will react with her current medication he doesn't feel that's a risk we should be willing to take. Considering how much he goes above and beyond for us, I was more than willing to take his advice on the subject. Also, he knows a lot more about it than I do.
Katha has show signs of regression again. She has started falling down a lot more again, her speech is slurred and she is having problems going to the bathroom on time. She has also had a couple more panic attacks.
We are hoping she is just having a bad few weeks and will bounce back better than ever. This probably isn't going to happen but it doesn't mean it's straight down hill from here either. She will have good days and bad days like she always has.
With any luck we will hear from the psychologist soon so that we can at least have some idea if we can do anything to help her with panic attacks. Simply because they are so draining on her and when she has them it's impossible to send her to school because they usually end with her getting physically ill.
With the other issues, unfortunately there is nothing the doctors can do but sit back and see what happens. We could put her on medications for the cataplexy (which is when she falls down because of an emotional outburst) but I have asked that we wait and see because it's not happening enough to put her on another medication.
Katha is continuing to draw back into herself like she always does when her speech slows down again. It's sometimes hard to remember that she won't include herself in anything unless you make a point to get her to participate. Even then, she doesn't often have the energy to participate long. I find she has the most energy right before bed and then ends up staying up later than she should.
Enlarged Liver and Spleen: As far as I know this hasn't changed.
Ataxia (unsteady gait): Katha uses her walker now whenever we leave the house. Although, when out, if she finds something that excites her, she will run off, leaving her walker behind. When this happens it's kind of fun to watch other people's faces. I think that they think they just witnessed a miracle, ha ha ha.
Dysarthria (slurred speech): Katha has started speaking very quietly and slowly again. Because of this she doesn't like talking to very many people unless they are willing to take the time to listen to her. (If they can understand her at all).
Dysphagia (trouble swallowing): When drinking Katha will often choke briefly. However, this hasn't effected her eating at all.
Basal Ganglia (holding limbs at awkward positions): Katha sometimes does this. You can see it if you're looking for it but it is far from constant.
Dementia (memory loss): Katha still forgets things but is easily reminded. If she hasn't seen you fairly constantly, she won't remember you. So, don't take it personally, it's just part of the disease.
Seizures: Still seizure free!
Gelastic Cataplexy (falling down in response to a large emotional outburst): She has had a couple really bad falls, not always from this, but this doesn't help. However, it is not frequent enough that I feel she needs to be medicated for it.
Sleep related disorders: Katha loves to sleep, however, she has a tough time going to sleep and a rough time waking up.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has a difficult time looking up and I'm starting to wonder if when she does it can cause a panic attack. (Her last panic attack was after she had fallen down the stairs and then after recovering looked up to take her ski pants down and then started screaming "MOM! I'M FREAKING OUT!" Which scared me but made me giggle when I though about it later.