Angelman Today November / December edition 2013 | Page 39

problems.
I worked hard to educate him, especially
because I was a teacher, I could not imagine
that my child would not be educated. He had a
trotter before walking then a
tricycle when he was 2. When he was 2 and a
half, he was able to used pedals.
Each year on holidays, I gave him a bicycle,
first with training wheels and later we went to
two wheels. He had one bike with training
wheels so he can freely ride in the garden, and
one without training wheels to start learning.
And everyday, I made him practice ten minutes
on the road around the village. I held the
handlebars and saddle it so it did not fall and I
ran! I was soaked in sweat! But after two
weeks I stopped, little by little, holding the
bicycle and he got to do it alone. The bet was
won betweem his uncle and I. Each summer
holiday, we go for rides, more and more.

In winter, with me, he bikes on Bois de
Vincennes near our home. Sometimes he does not
want to continue or he will stop suddenly and
turn to see if anyone was behind him.
In short, learning was long. He was taught
braking, stopping remaining on the right side of
the road (it is the hardest but he gets better and
better ).
Now, he loves all terrain bikes but also, he enjoys
the road, remaining on the correct side of the road
when a car arrives . Although, we are vigilant and
warn him in advance of the crossings, stops signs
and when cars arrive. He can ride several hours
without fatigue. In the beginning, he played with
the derailing and we had to block it. Now, for 2
years, he does not play with it any longer. We
settle (adjust) the derailing so that he cannot go
too fast. I have difficulty in following him now
but fortunately, his uncle still can but soon the
pupil is going to exceed (overtake) his teachers!

Clinical Trial Begins on a New Treatment Using
Cannabis for Intractable Seizures in Children
There is a study underway to test the safety and
efficacy of Cannabidiol (CBD), the nonpsychoactive compound of cannabis. Some of the
experts involved are the Angelman communities’
very own specialists Dr. Elizabeth A. Thiele and Dr.
Ronald Thibert of Massachusetts General Hospital.
Both Physicians are members of the Scientific
Advisory Committee of the Angelman Syndrome
Foundation.
The study will provide a better understanding of the
maximally tolerated dose and potential side effects
of CBD as well as display its efficacy in two welldefined childhood epilepsy syndromes, Dravet and
Lennox-Gastaut, which are very difficult to control
even with medication.

CANNABIDIOL (CBD), the nonpsychoactive compound of cannabis

Angelman Today will be following this study closely
and will keep you informed.

For more info about this study go to:
http://www.gwpharm.com/Phase1Epilepsy.aspx