#103 Saturday 27 November 2010

Did you read page 27 of this morning's West Australian? It was about the use of anti-psychotic drugs in our community. The article was mainly about one person who years ago did some questionable research ... but the article also touched on the movement to control "over use" of the drugs. For the first time in my life I was moved to put pen to paper in response to such an article.

I said:
"Hi Colleen

As a parent using several anti-psychotics (under close medical supervision) for my severely autistic six year old daughter I was very interested to read your article.

It is very easy to jump on the populist bandwagon and decry the over prescription of these drugs ...... however ....

Consider the other viewpoint.

For many children, these drugs offer their only realistic hope of gaining enough control over their behaviours that they can begin to learn and think.

The ability to think is something that most people take as a completely basic ability ... yet I have watched my daughter so lost in her self-stimulation behaviours (stimming) that thinking cannot even begin.
And I have seen the stimming brought under control by  Risperdone.  I have verified this by carefully regulating of the amount of Risperdone administered daily ... and I can see that drug is having the right effect for her.

I have watched helplessly as she is racked by anxiety attacks that mean that she is unable to function .... and I know that I can control the onset and severity of these attacks by use of a different drug.  Just a day without it and she sinks back into huge anxiety.

The combination of several different anti-psychotics in carefully monitored amounts has meant that our daughter has successfully completed Year One in a mainstream class!  And this is a girl  who was non-verbal to the point where she could not even say YES or NO correctly a year ago!  She can now use sentences to communicate!

The road to finding the correct drug combination is hard and it's painstaking ...... and from the outside it could well appear that drugs were being thrown at her!  Over-prescription!! Horror!

The process is of finding a drug that her body will react to in the right way ... and hence many drugs have to be tried.  There is no way to predict what reaction an individual person might have to a particular drug ..... so they have to be tried in minute doses till the right one is found.

Please lend your support to all the autistic children in our community. One day an answer to their nightmare will be found ... but till it is found, these drugs are our best hope.  Don't let a mis-guided popular crusade destroy that hope."

#102 Thursday 25 November 2010

The Ritalin seems to be doing the right thing at the higher dose .... Kaylia is calmer and largely free of the anxiety. She will need to be watched closely (as always!!) to see that the improvement continues.
The arrangements for next year at school are taking shape and the process of transition from Year 1 to Year 2 has begun. For Kaylia this process needs to be well managed if we are to avoid higher anxiety from the changes in her routine.
On the sleeping front, things are going well. She is now staying asleep all night most of the time. We're planning the next phase .... getting her used to sleeping alone. The strange thing about many of these issues is that she was coping OK with them a year ago .... then it all went backward!

Autism is a bugga!

#101 Tuesday 23 November 2010

The unusual swings in anxiety levels (that we experienced on the weekend) have continued and Kaylia spent half a day at home yesterday. Today, she is going to school but I'll stay home from work and be on standby to go to school if needed. She has started a higher dose of Ritalin today ..... the Ritalin may be the cause of the anxiety ..... or it may help remove it! We don't know and we'll watch closely over the next 24 hours to see which way the pendulum swings.

This uncertainty is the same as we had last year when we were trying different medications .... Risperdal was the 4th one tried. We can never rely on the medication effect being constant .... the way that the body reacts to the drugs can vary from day to day and the changes must be observed / assessed.

Later .... by the afternoon, the school had not called ... so fingers crossed - all may have gone well.

(Harry Potter tonight!!)


- Posted by the Kaylee Blogger

#100 Sunday 21 November 2010

The blog's centenary! That's a milestone eh wot? .... and we now have 11 followers .... but number 11 is a mystery! Who is "Copyboy"?

Today .... in fact all this weekend .... has been difficult again. Kaylia has been alternating between highly anxious and normal. We don't know why and it is really adding to our stress. One minute she is fine ... then she becomes anxious ..... then she settles down. We'll need to observe and try to see just what is going on.

Life for Naomi is still highly stressful .... with Kaylia stress, business stress and family stress .... it's all very hard to handle. Not long to go the Christmas break. This year we need it! (Zoe has just been looking at the photos from our trip to Bali in December 2008) ... it would be great to be heading off to Bali again now!
In the photos, we noticed just how much Kaylia has changed in the past 2 years ... appearance, behaviour .... lots of changes!