Sunday, 1 September 2013

Sept. 1, 2013

So, in a couple days Katha starts Grade 2.  We had a very busy and fun summer.  Last Sunday we went swimming.  While there, Katha had 4 episodes.  I could only describe them as panic attacks.  Now, these panic attacks aren't uncommon for Katha.  However, these ones were completely unprovoked.  It finally ended with her vomiting in the pool. 

Honestly, they scared the crap out of me.  Especially since she had spent 2 days begging going to the pool and by the time she went through the fourth episode she cried and asked to go home "where it's safe". 

Monday morning I called both her metabolic specialist and her neurologist.  The nurse from her metabolic specialist immediately told me that it was probably nothing and to keep monitoring her in case it happens again.  The nurse at the neurologist told me she would speak with the neurologist on call (because Katha's neurologist has already left the hospital) and get back to me in a couple days.

In the meantime, the children's hospital called to ask if we could come on Tuesday for the swallowing assessment because there had been a cancellation and if we didn't take it, it would probably be another six months before we could get in.

So, by the time the neurologist nurse called me back I already knew I was spending Tuesday in Calgary.  I heard from her first thing on Tuesday morning and the neurologist wanted to do another EEG to see if the panic attacks were caused by a seizure.

So, Tuesday we headed to Calgary to do the two tests.  The swallowing assessment went really well.  We found out that she tends to let food sit on the back of her tongue and that is why she tends to choke went drinking.  There is not much we can do about that and will go back for another swallowing assessment when she starts to choke more.

Then we went over to the EEG.  Now, because we didn't know that she was having an EEG until that morning she wasn't properly ready for the test.  Usually they want her to sleep through the test and be very sleep deprived, which usually helps bring on a seizure.  They couldn't get Katha to go to sleep during the test, but still got pretty good results considering everything.

Katha's brainwaves are slow, which is to be expected.  However, her EEG looked exactly the same as it did a few months ago.  So, while they cannot guarantee me that she didn't have a seizure, it doesn't look like she did.

Going forward they want me to video tape an episode when it happens again.  But, it's been a week and it hasn't happened again.  In fact, she has been acting perfectly normal, which makes me hope that it was an isolated incident.

Other than that Katha continues to improve as she has been doing all summer.  While in Idaho and Montana she even started to jump into the pool all by herself.  It was amazing and we are so blessed to see the old Katha starting to re-emerge.  She hasn't been so "with-it" in years and we thank God everyday that we have been given the opportunity to make as many memories with her as we can.  We know it won't last forever, but we are so grateful to have this amazing time with her while it lasts.

So, we will go onto the symptoms:

Enlarged liver and spleen: Still the same.  Slightly enlarged but doing really well.

Ataxia (unsteady gait):  Katha has been walking really straight (for her).  Falling down isn't inevitable right now.  Don't get me wrong, she still falls down but it has reduced a lot.  Where she used to fall 4 or 5 times a day, now she only falls every other day.  In fact, while we were in Idaho this summer at an amusement park we were waiting to use a handicap entrance and they tried to tell us it was for people who were actually handicapped.  Amory kind of snapped at the guy that said it but the rest of us took it as a compliment on how well Katha is doing.

Dysarthria (slurred speech):  I find that a lot of people are understanding Katha more and more.  She still speaks really slowly (in fact one of my nieces was just asking my mom why Katha speaks so slowly) but the fact that almost everyone can get an idea of what Katha is trying to communicate is a huge accomplishment for her.  I even find she is speaking louder.  In fact, in the past few weeks I have said that she has two volumes whisper and ear drum shattering loud.  But, the fact that I have to tell her to stop yelling is amazing. 

Dysarthria (slurred speech):  As I mentioned above, she had her swallowing assessment.  She is doing well and hopefully that trend will continue .

Basal Ganglia (holding limbs at awkward positions):  I notice this every once in a while where a few months ago it was almost constant.

Dementia (memory loss):  We still battle with this and I'm sure we always will but we like to laugh at it.  (What else are you suppose to do with an 8 year old who forgets what she is trying to say in the middle of  saying it?!)  Katha's sense of humour has been an amazing blessing to help cope with everything.

Seizures:  We will continue monitoring for more panic attacks but hopefully there are still no seizures in sight.

Gelastic Cataplexy (falling down in response to a large emotional outburst):  This still happens quite a bit but she still catches herself most of the time.

Sleep related disorders:  Katha still has trouble getting to sleep a lot and gets up early.  On days that it's really bad she tends to have a pretty bad day that day.  The start of school will be interesting.

Sensitivity to touch:  This has all but disappeared.  I have not noticed any sign of this symptom in a while.  In fact, I will probably take it off the list until it starts reappearing.

Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down):  While this is still hard for Katha to do it is happening more and more.  In fact, at the neurologist she was mentioning that she blinks before looking up.  Which is apparently a coping mechanism for this particular symptom.  I found that interesting at least.