Thursday, 3 October 2013

Oct. 3, 2013

Today was another fun-filled doctor today.  Although, to keep completely up to date, I should start at the beginning of the week.  (It's been a long week!)  On Monday Katha's teacher called in the middle of the day to let me know that they have been having issues with Katha's behaviour lately.   Apparently she hasn't been listening, getting very frustrated and crying a lot.  She also hit her EA.

If you have ever met Katha you will understand why I was shocked to learn this.  I could probably count on one hand how many times she's hit her brothers and she has never hit anyone else.  When I asked about it when Katha got home (after trying to lie about it) she finally admitted it by starting to cry and PROMISING never to do it again.  I told her the next day she must apologize to her poor teacher and promise her never to do it again.  She agreed and I was hoping that was that.

Long story short, it wasn't and we now have a system in place that will hopefully curb this behaviour quickly.  It involves her teacher or EA giving her a rating on her behaviour that day and putting it in her agenda.  Then I will reprimand her or reward her based on that rating. 

At the doctor today we learned several things.  He is going to refer Katha to the Children's Hospital Psychologist.  This is because of a few things.  First, the "panic attacks" at the pool.  Second, I have suspected for a while that Katha might have dyslexia, so they will look into that more.  Third, her drastic change in behaviour.

He also mentioned that just because she is doing so well on her medication it doesn't mean that it will improve the quantity of her expected life-span.  He reminded me that when she went on the medication he advised that it wouldn't quantity but quality of life.  In other words, the life expectancy he gave us as 3-5 years is down to 2-4.  Yes, on October 24th it will have been a year since her diagnosis.

But, Katha continues to do well.  Which we are thankful for everyday especially since realizing we've already gone through a year.  The great part is that this disease is so unpredictable that we have every hope that Katha will prove all of the doctors wrong and far exceed their expectations.

Onto the symptoms:

Enlarged Liver and Spleen:  Katha's liver is still normal sized.  However, according to the last ultrasound her spleen has actually grown slightly which has led the doctor to believe that maybe the medication isn't doing as much for Katha as we had previously hoped.

Ataxia (unsteady gait):  Katha has refused to use her walker at school lately (which has been part of the behaviour problems).  She falls down approximately once every other day which is better than the several times a day it was.

Dysarthria (slurred speech):  Katha is still difficult to understand, however, today at the doctor she was in a very talkative mood and I never had to translate for her once.  She would even clarify her stories (when telling a story about her cousin Emma she would stop and explain who Emma was to her).

Dysphagia (trouble swallowing):  Katha hasn't choked in a while.  According to the doctor this is one of the things that the medication is supposed to specifically help with.  It seems to be working.

Basal Ganglia (holding limbs at awkward positions):  Katha still does this but it is very subtle most of the time.  She also has a slight tremor but it has actually gotten better in the last few months.  This mostly effects her with eating.

Dementia (memory loss):  Katha will still forget what she is saying mid-sentence but generally she just laughs it off.  I haven't noticed a drastic improvement in her memory but it's not getting worse either.

Seizures:  Katha still has not had any seizures.

Gelastic Cataplexy (falling down in response to a large emotional outburst): This still happens when Katha is getting tired and being silly.  They are very aware of it at school and are constantly on the lookout for it.

Sleep related disorders:  Katha still has a hard time getting to sleep and generally wakes up in a panic.  However, she does seem more energetic more often.

Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down):   She looked up today!  It was really noticeable and very exciting.

So, yeah, I'll probably think of more later because there has been a lot lately.  I'll try to include whatever I think of on the next update!