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Dear
Editor
(Your
article on Epilepsy and SUDEP (Sudden Unexpected Death due to Epilepsy)
Issue 36)
My
16 year old son, Keenan had his first seizure on 1/31/03. His teacher
witnessed it and it was classfied as tonic clonic (grand mal) lasting
almost 3 minutes. The final diagnosis on 2/18/03 was unprovoked single
seizure (after negative CT scan at ER on 1/31, negative EEG and MRI
in the weeks following). The neurologist listed options and meds were
an option. My son did not want to take meds and said no. A few weeks
later (3/1) he said he had a 'funny feeling' while lifting weights
and wanted to start on seizure meds. He was prescribed Dilantin and
developed a rash. He was then prescribed Tegretol and after a while
complained that they made him hear things in a weird way (people sounded
as if they were talking out of a radio). The neurologist said that
she had never heard of this side effect. It was a battle from the
start to get him to take his meds, I would even find them stashed
under the sofa, chairs, etc., The neurologist ordered blood tests
to check Tegretol level and it was low. It was decided that since
the diagnosis was an unprovoked single seizure, no "funny feelings,"
no additional seizures, poor medication follow thru, meds were stopped
(mid May 03). My son was found dead on the floor in his room on 9/3/03-
24 days before his 17th birthday. The medical investigator has not
been able to find a cause, but believes that since he had the one
seizure that is what caused his death.
We
are in shock and disbelief that only his second seizure killed him.
From the research I have done on SUDEP I have not heard a story such
as my son's. Most people seem to have a diagnosis of a seizure disorder
(epilepsy) and have experienced many seizures before SUDEP.
My son did have learning problems (he was bright-IQ 120 but was not
able/ unwilling to produce work) and his teachers have always described
him as spacy/unfocused. Keenan described himself as 'lazy.'
I apologize for my rambling, thank you for your time. I wanted to
let you know of our story. Thank you for your interesting article.
A grieving mother (name
supplied)
We offer our sympathies to our correspondent and her family. We have
to acknowledge that, despite advances in medicine, we still have a
lot to learn, and we still have to face pain and loss at times. If
there are other readers who have faced similar problems, you are welcome
to use these pages to share your experiences. This letter refers back
to an article which appeared in our December 2002 issue. [Click
here]. At the end of the article there are helpline addresses
for the United Kingdom. We would be pleased to publicise helplines
in other countries.
Dear
Editor
I
work in a City Learning Centre in Bristol and have the responsibility
of setting up projects using IT for schools in the North Bristol area.
I
am hoping to run an electronic chess club as of October this year
and would like groups of children from each of the world’s continents
to partake. I already have a group here and one in the US ready to
go and I now seek groups or classes of children from Asia, Africa,
South America and Austral Asia.
There
are websites through which chess can be played online and the plan
would be to avoid time-zone constraints by playing cross-continental
games on a one-move-a-week basis. Chess, being an international language,
could form the starting point for many future world-wide projects
via the Web.
I
understand that the Webmag may have links with International organisations/schools
and I wondered if you could suggest any that I might be able to contact
with the idea?
Many
thanks,
Neil
Dennison
If
you can help Neil, please click
here to send him an e-mail
Dear
Editor
Re
the poem by Kathy Winters - Sounds almost like my son who is almost
12 years old. I wrote something like this to my own cousin this morning
but not in poetic form. As a mother my heart aches because as a mother
you protect your child and this is something I can not fix or control.
All I can do is observe while I see a going of backwards instead of
forwardness. Ones call it a learning disorder right now I feel helpless
in not being able to correct this condition for my son so others won't
hurt and make fun of him for being different . I myself is having
anger because I cannot correct this for him and need help in understanding
and being patience with him all the time. How can a child appear to
be doing okay then later in his years seem to be reverting backward
like he is in a 3rd grade mind mentality. What has happened?
Name
and e-mail address supplied
Click here
to read the poem in the March 2003 issue
Dear
Editor
I
am very interested in your site...I have been working to change laws
and to hold social service and judges accountable for the continued
reunification of abused children after they have sufficient evidence
that the child is in danger. As a Crime Analyst with over 20 years
law enforcement experience, I have researched hundreds of cases and
found an alarming number of children returned only to suffer more
abuse and in many cases death. I also adopted 3 such severely abused
children and have lived their night terrors, food hoarding, rage,
etc. Please check out my web page and book, BLINDERS. Also, we are
launching another new website in June 2003, www.American Child.org
It will detail: AmericanChild - The Injustice Files and will profile
cases of child abuse from each State to raise the awareness level
of child abuse to citizens. Many people are simply not aware of the
epidemic level of child abuse....
Name
supplied - you may contact the sender by clicking
here
Dear
Editor
I
am trying to find out some information on the effects of institutionalisation
on children and young adults in the UK. Specifically in relation to
children with learning disabilities if possible.
I am at a loss of where to look for this as a search of likely places
and the internet has produced some wierd and wonderful results to
say the least!
Any help, information, or points in the right direction would be gratefully
appreciated.
Thanks
Lucie - you may contact the sender by clicking
here
Dear
Madam:
My name is Elena Sanchez and I am interesting in knowing about the
reports before The Radisson Report. I knew about the Radisson Report
from the web site of the webmag "Children". In this site,
I found that the Last Report which explain the present situation ot
the Social Pedagogy and Social Education (and the Chidcare workers)
is the Radisson Report. From this Reporta I was able to read that
before it, it was made the Waterhouse Report. But also, it names other:
I think the first one is the Pindown Report (1991), after, The Wagner
Report, Warner one, Kent (1997), Waterhouse (2000), Radisson (2001).
Is this the right order?
And where I can find information about this Report? On the webmag?
Also I am interesting in the RCCI (Residential Child Care Initiative).
I hope you can help me.
Thank you very much for your kindless.
Sincerely.
Elena
Sánchez Martínez - you may contact the sender by clicking
here
