Monday, July 16, 2007

Lorenzo's Oil

I was watching the movie, Lorenzo's oil this weekend, for the first time. Wow. What an amazing (true!) story. Very inspiring, and at the same time, it really got me wondering what is the cause of apraxia of speech ? What is the cause for Liam ?

Internet research tells me there can be many different causes of apraxia, genetics, brain injury, cerebral palsy, genetic syndrome.. but what is the common thread? Scientists don't know. Some think that it may be a very specific and small injury to a specific part of the brain. This injury could be caused by many different things and accounts for the varying degree of severity, and the presence of other issues (being that a person could incur this specific apraxia brain injury as well as other brain injury in other places causing other problems.) Other theories are that due to some problem with myelin in the brain the impulses are not able to travel.

The movie Lorenzo's Oil was very interesting to me because the treatment they were able to develop was made of Essential Fatty Acids. Essential Fatty Acids can also be helpful for children with apraxia, though it isn't known why. It is very much a parent to parent word of mouth kind of thing, nothing like, a doctor giving a script for it. And the book The Late Talker discusses how EFAs can help apraxic kids. But it is all very mysterious.

Lorenzo suffers from Adrenoleukodystrophy a rare disorder involving the breakdown of myelin in the brain. Before Lorenzo's parents learned all they could, pressured the medical community and came up with their own (somewhat succesful!) therapy, little to nothing was known and being done about this disease. It was just too rare. The interesting thing too, is that apraxia is a symptom of adrenoleukodystrophy.

I wonder if one day there will be a definitive answer on the cause of apraxia. I wonder too... if I am doing all I can for Liam.


britmummybites said...

This is why my girls have taken part in this "An interesting opportunity to participate in research

As Clinical Researchers at Guy's Hospital we are looking for families where one or more children aged 6-16 has a persistent speech and/or language impairment to take part in a project looking for the genes associated with such developmental problems. Families will be seen in London where possible so living in the South of England will help! Oxford Wellcome genetics laboratory are involved in the genetics analysis part of the research. "

I grew up with a speech problem but was never diagnoised with anything. When was pregnant with my son had some genetic counciling and got told it was an autosommant domiant condition 1-2 chance of any children having the speech difficulties. It's been 3 for 3. It's different in each of them as well.

Annie D said...

interesting. when do you find out anything ?

britmummybites said...

Have to go back for some more testing.
"Wechsler Individual Achievement Test (WIAT). This is a wide ranging assessment of literacy and numeracy skills."

So far got Willow's results from the first tests that the educational psychologist did.
And from the speech therapist.

She still has quite a few specific problems which will be fun trying to make sure that those area's are worked on in the new school year.

Vera's i don't know, may get it when they go down.

The genetic side of things??????? So far genetic tests have shown up nothing would be nice to find the gene but i think that is going to take a long time.