What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Thursday, 24 July 2014

Diagnosis - 2014, the Big Setback

2014 was always going to be a difficult year of big changes. 

We just hadn't quite appreciated how big they would be.

All three children were starting at new schools. Beaver was off to High School, and was glad for it, as the last two years of Primary School were unpleasant to say the least. The small independent school we had sent the children to had gradually been changing, and I felt our two special needs children were not really welcome there anymore. When you get a sense everything is a "management problem" and you spend lots of cash on fees and special lessons and aides and their education does not advance, even goes backwards, you know something is not working. I was taking the kids to an outside reading program called "MultiLit" and our oldest advanced a year in reading age in just one term! So we decided to send BooBoo to the local primary school where she can be part of the local community and we spend our money on MultiLit and private tutoring instead. As it turned out, our sensitive little Possum was not really happy at school either (apart from his classmates, who were a super bunch) and decided to follow his sister to the local school for his very last year of Primary. Always the strategic chess-player, he also worked out that this was good preparation for going to the local High School next year. And there is of course always Skype and MineCraft to keep him connected with his old buddies....

By April, all the kids were settled into their new schools. Possum and BooBoo took to their local school like ducks to water,and even Beaver was starting to feel comfortable in the Special Support Unit (for kids with mild to moderate intellectual disabilities) at his High School. The only issue was his discomfort in using the toilets - grubby and far away, only reachable after navigating a throng of rowdy kids, so he tended to hold on too long and had the odd accident.

Things were getting easier.

We should have known better.

We noticed Beaver's gait changing in early April. This is not an unusual thing. Every time he has a growth spurt, it takes his body a while to "catch up" and his walking deteriorates. We didn't think too much off it. He certainly was growing rapidly.

Then he got a blister on his toe. A nasty blood blister, which kept growing and got infected. It turned into a pressure sore which needed specialist care. Towards the end of April Beaver needed to stay off his foot completely. Luckily we managed to get hold of an old wheelchair from a friend of ours so we  were not entirely house bound. School was off, though, as most of Beaver's school is housed in old buildings on a sloping site - including his Support Unit!

After rest and specialist care, the toe improved. But Beaver was not getting back on his feet easily. He seemed to have lost lots of muscle, and his balance seemed have gone missing. We bought him a walking frame and started a program of exercises to get him walking again.

At the same time, we were still tweaking his Bipolar medication. Beaver was stabilizing, but there were some serious side-effects to be dealt with, most notably significant weight gain.  We trialled a new medication, and the day after we introduced it, Beaver lost control over his bladder. We took the medication off, but the incontinence remained. 

All this made alarm bells ring and our psychiatrist decided the neuro-genetics team needed consulting. 

They came, and they did not like what they saw.

Some eyebrows were raised, some brows were furrowed, and some tests ordered.

Two days later Beaver went to bed shivering and shaking, as if he was in shock. The next morning he woke up and fell out of bed. He had lost control over his left leg.

We made a video and send it to the neurology team. Within days Beaver had an MRI of his brain and spine under a general anesthetic, a bladder ultrasound, a nerve conduction test. And then some.

We learned the meaning of some new words. Degenerative. Peripheral neuropathy. Demyelination. Neurogenic bladder. Intermittent self-catheterization.   


Glee said...

Farkenell Heike! Give that young man a hug from me. That is just SO unfair.

Alison said...

I'm guessing degenerative is one of the most horrifying of the horrifying new words you've had to learn.

That really sucks.