Katha had her first appointment with the G.I. clinic in two years today. So, obviously, this was her first appointment with them since her diagnosis. They had really good news.
We had taken an ultrasound of Katha's liver and spleen back in October. Her liver was a normal size and her spleen had shrunk 2 cm. Katha didn't start her medication until December so that means we were seeing positive results even before her neurological symptoms were improving.
Also, her blood work showed that her liver is functioning near normal. So, her doctor feels that the disease is probably not affecting her liver and spleen at this point. It may in the future, so they will keep her file open, but for now they are completely handing us over to the metabolic specialist.
Then we saw the metabolic clinic. Her gaze has improved slightly, her speech is quiet and slurred, and she wasn't as interactive with the doctor this time. However, she had been sleeping in the car, not to mention she had some cataplexy in the parking garage. That always freaks her out quite a bit. Also, I had mentioned to her that she may have to get blood work because the G.I. clinic had ordered some to keep track of her liver functions. So, she wasn't really into trusting doctors right at that moment. (I find if I warn her she's getting blood tests she handles it better).
The metabolic doctor also advised us that Katha can slowly start re-introducing lactose into her diet. He said that a good place to start would be things like cooked cheese. He suggested pizza. THAT made Katha happy. She hasn't had pizza for 6 months. So, when we stopped for supper she almost jumped out of her seat when she saw pizza on the menu. I've decided to keep her home tomorrow just in case it was too much too fast. She ate most of the individual sized pizza.
Enlarged Liver: Is a normal size and functioning close to normal.
Enlarged Spleen: Is currently 13 cm and functioning well.
Ataxia (unsteady gait): Katha has started to walk without turning in her feet which has resulted in fewer falls. She has also started jumping on the trampoline again and running.
Dysarthria (slurred speech): Katha speaks very quietly and slurs. She is often very difficult to understand. However, she has started getting louder, sometimes even yelling.
Dysphagia (trouble swallowing): A clinic from Lacombe called to say that we have been referred to them for a swallowing assessment. They are sending out a bunch of forms to fill out before we can be booked in for an appointment.
Basal Ganglia (holding limbs at awkward positions): This is definitely one of the problems that the medication is not touching. Katha does this a lot.
Dementia (memory loss): Katha has recently started playing games that require some memory which has helped improve her memory.
Seizures: Katha still has not had a seizure. In fact, as I was unpacking our suitcases from Disney World I realised we had accidentally packed her seizure medication in the suitcase instead of the carry-on. Thank goodness she didn't have a seizure on the plane.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This still happens quite a bit. The doctor offered us medication to try to control this but I declined because it doesn't happen often enough for it to be a big enough concern.
Sleep related disorders: Katha has been sleeping in a little bit. Hopefully this is a sign of her getting back to her regular sleeping patterns.
Sensitivity to touch: Katha is not big on people touching her but that could just be her because as soon as an employee at Universal asked if she could hug her Katha hugged anyone who would stay still long enough to accept a hug.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): I have failed to mention this symptom before. Katha has trouble looking up. In fact, there are days she can't look up at all. Today, she looked up farther than I have seen her able to in months. Even the doctor was impressed.
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