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Medical Forum / Diseases and Disorders / Epilepsy / April 2006

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Angelman Syndrome

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gmikota@comcast.net - 07 Apr 2006 08:36 GMT
My daughter is 6 years old and started having seizures at 4 months. We went
through all the drugs and are currently on Keppra and the Ketogenic diet.
Our Neurologist told us Thursday that the blood test showed a mutated gene
which was the last marker for Angelman syndrome.
Does any one have any experience with Angelman Syndrome? We have never
heard of it and our girl is globally delayed and still does not talk.
Please help if you can.

Thank you

Joe
G. - 07 Apr 2006 16:27 GMT
Did you try a search under Google?
( http://google.com ? and search for that name), or on this group's
history if you can find it?  A woman who used to post here about 1997-9
had a son who had it.  When I wrote her (on an older computer) when
someone else posted here, she sent me a list of sites  specific to
discussion groups for Parents.
 If you've a Local chapter of an Ep. Association they might know of a
link or there might be one via Ep.Foundation of America http://efa.org
or someone might list one here shortly.
 Julie and Howdy both have detailed websites (www at end of their
posts) that also might have links to some further information or
groups?   G./
Julie - 07 Apr 2006 20:40 GMT
> My daughter is 6 years old and started having seizures at 4 months. We went
> through all the drugs and are currently on Keppra and the Ketogenic diet.
[quoted text clipped - 7 lines]
>
> Joe

Hi Joe, welcome to our group.  I don't think I have heard of this
syndrome.  (But then I can't always remember everything).  I did a
search on ask.com and found this organization.
http://www.angelman.org/angel/

BTW how is your daughter doing on Keppra?  I am taking it now and am
doing great as far as side effects.  I am still on phenobarbital, which
I will be slowly going off, so I do find that I feel drugged, at times,
but I expected that.

Take care,
Julie Walton, Volunteer Webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org
G. - 07 Apr 2006 23:52 GMT
Welcome Joe.
  Hi Julie. Were you around when 'Lulu' was still posting here? (98 or
99? --> her Eml address and posts are somewhere on disk of my Win.95
computer :-< ).
 Her *son had that syndrome, and at the time she forwarded me about 2
Parent's Groups she was on (that I don't have here), for a woman who
posted about a son who had it, also, back then after she had stopped
posting here.
 I wondered if they did a Google search on that **name (angelman, not
Lulu), and discard our 2 posts here, if they'd find the Groups' Names?
I think they were more active than here, so likely would have e.g.
8-12+ posts a day, and a Google Search would find it more easily.   G./
Julie - 08 Apr 2006 03:27 GMT
> Welcome Joe.
>    Hi Julie. Were you around when 'Lulu' was still posting here? (98 or
[quoted text clipped - 8 lines]
> I think they were more active than here, so likely would have e.g.
> 8-12+ posts a day, and a Google Search would find it more easily.   G./

Hi G.R., I did a search on google groups for alt.support.epilepsy
angleman and it didn't come up with anything.  I would have been around
here during 98-99, but like you I have moved on to new computers.  We do
need to keep better track of info. like parent support groups.

Take care,
Julie
G. - 08 Apr 2006 04:37 GMT
 *I hoped you had a Different search engine than I.  **Note to Julie,
you might have spelled it  'angleman's ' ??  You might have found a
bunch of Fishermen... :-<   If you used other than Google, see below.
(It told me at Google it found a bunch more hits at Angelman when I
typed Angelman's .   Then most of the sites used the first spelling,
but some had a  's  too. )

  I went to http://google.com (I think, I went through my bookmarks),
and when I typed in angelman's syndrome, it said 'do you mean angelman
syndrome?' ,  I clicked Yes, and it brought up about 459 references !!

  For the **Original Poster, if you can find that, the First one (most
likely to help according to Google Search Engine characteristics), it
wants you to REGISTER.  Go ahead and *do that. I think I did that
before about 1999 with another group.  What they do is send you an
Email back with a LINK and possibly a Password, and they might ask for
additional information about you and your family.  *They do that to
keep their Group Clean from Trolls and Robots.   Go ahead and Register
and you might find many Families there who can answer questions for
you.

 Under that google No. 1, are the rest of messages it has found,
sorted in the **order it thinks might be Most Helpful to you, to Least
likely.  It does that by searching the groups it will show you, so even
if someone mentioned it on e.g. an Astronomy group, the post might turn
up as number 321 from 1 to 459.  (460 now !! with mine here )
  *I found when I used Google a few times for other things that you
only have to look at e.g. Number 1 to 20 or 25, then the Posts might
start to get less useful or less what you're seeking. But that *First
group I mention above *might be the Parent's Group that Lulu gave me to
pass on to the woman in the UK? back when I did that.  Since I knew her
Son had that type of syndrome (one note I saw said it might be related
to Down's? or some kids with Down's can have that syndrome too? ), Lulu
(my other computer)  said that I'd have to tell her first to Register,
then when she got a Confirm Email, it told her how to Reply to get on
the "Train",  and she then had the support group to use.

 *One other group I saw under Google was in Australia.  I think it
Also had a Register step, but if you want you could have a look at
http://australianholidays.com/asa/asahome.htm  and see what they have
too.   Don't be concerned about the Country.  While some posts there
might be specific to what's Available in Australia, many sites let
international people on-board who have similar needs and interests.
(*This group at one point had about 6 countries in Europe, Canada, US,
New Zealand, Australia, The Netherlands and UK all active at one time.)
 That's one advantage of the Internet as a Message and Support source
for you.
  If you have time, come back and let us know how you made out.  And
if you find some other www addresses that may not require the extra
registrations, you could post a list here too.  Only about *20% of
people who read this group actually Post here.   But it is read or
searched from time to time by others looking for help.  If you put the
Name in your Subject Line, any googles they do will pick up Helpful
stuff for them too.

  If it's like some other Search engines I've used you can use an &
symbol on the search if you want to retry and refine the search to get
less hits to read.  So if e.g. you wanted to know if anyone was using
vitamins for Angelman, you could enter in Search box Angelman&vitamins,
and it'll only bring you messages that contain Both those words
somewhere in the Text of the messages.  It sure saves a lot of looking
around, if there are specific things you wonder about but don't want to
read all the messages to find something minor. //  G.
  (I forgot to look at your Timezone before I came here-- I'm on
Eastern Time, and Julie is on Mountain,  U.Time-5? and 7 hours.  So you
can correct relative to whatever your timezone is. If you post
something in e.g. 4 hours, you won't get a reply until Daytime here.
The advantage of this group though is that someone will see your
replies over next 24+ hours and might have other links for you. )
G. - 08 Apr 2006 04:40 GMT
> gmikota@ wrote:
>
[quoted text clipped - 23 lines]
> Epilepsy Foundation of Idaho
> http://www.epilepsyidaho.org

*** I see now you *both spelled it Correctly 'angelman'.  It was only I
who tried to search on angelman's .... :-<  G./
Lewis - 10 Apr 2006 10:08 GMT
I searched with Yahoo for Angelman Syndrome and many
matches came back.  The first two are

www.angelman.org/angel
www.asclepius.com/angel

> My daughter is 6 years old and started having seizures at 4 months. We
> went
[quoted text clipped - 8 lines]
>
> Joe
G. - 10 Apr 2006 23:04 GMT
> I searched with Yahoo for Angelman Syndrome and many
> matches came back.  The first two are
[quoted text clipped - 11 lines]
> > Thank you
> > Joe

 Hi.   There were 1-2? people who posted on that thread (with first of
your 2 sites you list above, as their link they used).   Hopefully
they'll see your note over next few hours or I'll look into my Archive
and see if I can decode an Email address for you.
  (If you keep older messages, Google keeps mine back about *7 !!
Days, whether I'm done with them or not... :-<  and sometimes it hides
any AntiSpam stuff in mid address, where I don't always see it.
Hopefully someone else can find an address or 2 for you and post them
on their Thread for us.    G./
 (**IF I can open the older posts at my end I'll add their address,
possibly munged if they have an antispam addon, below here too.  )
  Note *I've already been into and out of the First One, without my
Anti-Viral or Anti Spam (Norton) software getting upset at anything,
going either way...   G.//
> > --
> > ----------------------------------------------
> > Posted with NewsLeecher v3.0 Final
> > * Binary Usenet Leeching Made Easy
> > * http://www.newsleecher.com/?usenet
> > ----------------------------------------------
partials - 11 Apr 2006 01:13 GMT
><snipped>
>
[quoted text clipped - 7 lines]
> Hopefully someone else can find an address or 2 for you and post them
> on their Thread for us.    G./

Another poster today also mentioned old messages on a different thread, so I
thought that people would like to know about Google Groups. They have an archive
of newsgroup postings that goes waaaay back and with Google's recent aquisition
of DejaNews (another archiver) it will become even more complete. Search fields
include the poster's name, poster's email address, date, keywords in subject,
and body andsoforth. To find your hidden posts, just plug your email address
into the author field and click Google Search. Have fun!
partials - 11 Apr 2006 21:26 GMT
>> <snipped>
>  >
[quoted text clipped - 16 lines]
> your hidden posts, just plug your email address into the author field
> and click Google Search. Have fun!

In another display of my memory, I forgot to post the address
http://groups-beta.google.com/advanced_search?hl=en

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