Hi Susan and Miranda! 

I agree that it stinks that we need to pay for our medical care by paying for medical insurance or pay out of pocket, but at the same time we have the freedom to see who we want depending on our medical plan.  I honestly would not the USA government involved in making ANY decisions about my medical care.  I truly believe in the USA anyways, a lot of people would die before they got the treatment they needed b/c of bureaucratic red tape!  On other hand, I think it really stinks that you have to fight so hard for your children with regards to support in school.  The legal hassles and issues (the IEP the statements, tribunal etc…) that Miranda has told me about are mind boggling.  It is like they don’t want to provide the help the kids need in mainstream, but yet don’t want to provide the special schools for them either.  I know there are many families here in the US who have had to fight as well, I guess we are lucky our small town and our state (MA has stricter rules than the federal laws) and they have been very easy to work with overall so far that is!  I will write to you off list this weekend Miranda, Kevin is on school break starting this afternoon.  Hopefully we will have fun?! 

Take care both of you! 

Pam J

Gotta run Jamie just woke from his nap! 

-----Original Message-----
From: UndiagnosedOvergrowthSyndromes@yahoogroups.com [mailto:UndiagnosedOvergrowthSyndromes@yahoogroups.com] On Behalf Of susan smith
Sent: Friday, February 17, 2006 11:59 AM
To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
Subject: Re: [UndiagnosedOvergrowthSyndromes] Re: new to group

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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