Hi again Miranda
Gosh how I can empathise with what you are saying. Dr Cole has now said
that Shannon is "probably Sotos-like" and like you I don't feel any comfort
from this. I thought Sotos-like was a syndrome in its own right, but then
he went on to say that it is a description for those with many Sotos
features but who do not have Classic Sotos and may well have another
overgrowth condition, so...back to square one. I often use the Asperger
Syndrome route to get the help we need and that works quite well because
everyone has heard of it.

I will also look into the Special Kids website, because as you say, in the
UK we have different issues with education and health than our friends in
the USA. I always feel sorry for them that they have to pay for their
medical care, but on the other hand I always feel that they have so much
more information given to them than we do here.

Hope Finn is well. Keep in touch
Susan


----- Original Message -----
From: "finnedward98" <finnedward98@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Wednesday, February 15, 2006 11:45 PM
Subject: [UndiagnosedOvergrowthSyndromes] Re: new to group


> Hi Maxine/Susan
> I'm guilty of being on here from the beginning and then going very
> quiet.
> I think I just got to a point with searching where Dr cole said yes
> to sotos-like and I had to then start concentrating on school
> stuff/therapy etc. It wasn't the 'relief' diagnosis I was looking for
> to be honest - far from it, but it helped me argue his case with the
> authorities and that was the stage I was at/have been at. I am in a
> situation where whilst I use Sotos-like to the LEA/medics etc and to
> argue for support and therapies, in my heart I wonder still what it
> really is IYKWIM, but I have just been concentrating on the day to
> day and let the medical search slide in order to be able to do that
> for Finn I guess. Sorry for not posting more often :) I vow to do
> more :)
> I post a lot on a group in the UK called Special Kids in the UK, but
> I also read most of the posts on the sotos group and here too as the
> group in the UK is for all/any children with any special need and is
> not specific to Overgrowth. However I have found it extremely
> helpful with stuff that is UK specific especially fighting for help
> at school, statementing, seating, piedros etc and their knowledge
> about various medics etc. The downside is that there is only one
> other person with a child with Sotos on the group and she never
> posts. And when you read the posts on the sotos group or here, you
> just know that everyone 'knows' what you mean instinctively in a btdt
> kind of way (although everyone is very very supportive anyway on the
> UK group).
> Anyway, just thought I'd say hi and that I will try and post more :)
> Miranda
> --- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "susan smith"
> <shannick@...> wrote:
>>
>> Hi Maxine
>> I'm on this site too!! It used to be really good but then went very
> quiet.
>> However there have been a couple of new people posting recently so
> lets hope
>> we can get it going again. I think it is so important for all of
> us without
>> a definite diagnosis to be able to relate to each other.
>>
>> Susan UK
>>
>>
>> ----- Original Message -----
>> From: "mxnpowis" <mxnpowis@...>
>> To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
>> Sent: Friday, February 10, 2006 8:42 PM
>> Subject: [UndiagnosedOvergrowthSyndromes] new to group
>>
>>
>> > hi,i thought id join this group as my son michael has an
> undiagnosed
>> > overgrowth syndrome,he was tested 4 sotos but it was
> negative,michaels
>> > 18 months old but he started puberty at 8 months, trying to find
> some
>> > answers but its so hard!!! i hope to make friends with others in
> the
>> > same situation,were going through a hard time right now michael
>> > suffers from severe reflu and also aspirates fluid into his lungs
> he
>> > has so many chest infections because of it its unreal,were
> fighting
>> > with the docs to sort it out,but they are useless,they dont even
> know
>> > my son!!! sorry ot vent ,just frustrated,hello to you
> all,mxnpowis,uk
>> >
>> >
>> >
>> >
>> >
>> >
>> > Yahoo! Groups Links
>> >
>> >
>> >
>> >
>> >
>> >
>> >
>> >
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