You might want to check out www..angiomaalliance.org.
It is a very active website.
Kaye

--- moonbeam611@... wrote:

> Thank you so much for your thoughts, it would be
> nice to have answers but this seems extremely rare
> in pediatrics. Hopefully I will learn something
> that our docs aren't considering from what the rest
> of the list members are going through.
>
> Thanks
> Darla
>
> ---- neurovascular@yahoogroups.com wrote:
> >
> > There are 3 messages in this issue.
> >
> > Topics in this digest:
> >
> > 1. new to this group -- 2 year old son with
> vascular malformations
> > From: "moonbeamdarla"
> <moonbeam611@...>
> > 2. Re: new to this group -- 2 year old son
> with vascular malformations
> > From: "Sandi" <sandi@...>
> > 3. Re: new to this group -- 2 year old son
> with vascular malform...
> > From: kidro85@...
> >
> >
> >
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> > Message: 1
> > Date: Fri, 19 Aug 2005 01:28:26 -0000
> > From: "moonbeamdarla"
> <moonbeam611@...>
> > Subject: new to this group -- 2 year old son with
> vascular malformations
> >
> > Hi, my name is Darla. My story is about my son, 2
> year old Trent,
> > the sweetest little pumpkin head I know. When he
> was about 9 months
> > old I started to notice he did not use his right
> hand and mentioned
> > this to anyone who would listen though I was
> repeatedly told not to
> > worry about it. Around a year of age the docs
> started taking me
> > seriously and he saw a neurologist who was certain
> he had a stroke
> > at birth and wanted an MRI to confirm this, I told
> her I was sure
> > that the problem was progressively getting worse
> and that didn't fit
> > with a stroke but she blew me off and we waited a
> month for the
> > MRI. They found a VERY large mass in his left
> fronto parietal
> > region (about the size of a fist, and his head
> isn't very large at 1
> > year). The next day they went in and his
> neuro-surgeon said blood
> > that looked like motor oil just started oozing out
> as soon as they
> > cut. Apparently, he has some kind of vascular
> malformation (they
> > have never been more clear than that, though
> cavernous malformation
> > has been tossed around) that had started to bleed
> and had been
> > bleeding in his head for a long time creating a
> calcified cyst
> > around itself and this was putting pressure on his
> brain leading to
> > his symptoms. They removed what they could
> without causing too much
> > damage and he functions quite well at this point.
> Trent still has
> > limited use of his right side, oral motor weakness
> on that side,
> > much difficulty using his right hand and he wears
> a brace on his leg
> > to help him walk, he has a lot of PT and OT
> services to keep us
> > busy. Cognitively he seems to be on target so far
> and he is usually
> > a very sweet and loving little person.
> >
> > We thought that we were out of the woods with the
> vascular issues
> > until recently when his regular MRI(every 3 months
> with sedation,
> > not fun!) found that the original area of
> malformation had begun to
> > grow again. They aren't sure whether to do
> radiation or another
> > surgery but at present they want to watch and see
> what it does
> > next. There are also concerns that malformed
> veins in his GI tract
> > might be causing some recent tummy troubles he has
> been
> > experiencing.
> >
> > I guess that is about it, sorry write so long! I
> am wondering if
> > anyone else has had similiar experiences? Also, I
> am going to start
> > a yahoo-group specifically as a support group for
> moms who's kids
> > are going through this, I know there aren't many
> of us but if any of
> > you have kids who are going through this I would
> love it if you
> > would join!
> >
> > Thanks
> > Darla
> >
> >
> >
> >
> >
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> > Message: 2
> > Date: Thu, 18 Aug 2005 21:34:58 -0400
> > From: "Sandi" <sandi@...>
> > Subject: Re: new to this group -- 2 year old son
> with vascular malformations
> >
> > Darla, I don't have children with this problem. I,
> myself, have a capillary
> > telangiectasis on the pons of my brain stem.
> >
> > I just wanted to tell you that my heart goes out
> to you and your son and I
> > pray for him and your family that all will go
> well.
> >
> > Sandi
> > ----- Original Message -----
> > From: "moonbeamdarla" <moonbeam611@...>
> > To: <neurovascular@yahoogroups.com>
> > Sent: Thursday, August 18, 2005 9:28 PM
> > Subject: [neurovascular] new to this group -- 2
> year old son with vascular
> > malformations
> >
> >
> > Hi, my name is Darla. My story is about my son, 2
> year old Trent,
> > the sweetest little pumpkin head I know. When he
> was about 9 months
> > old I started to notice he did not use his right
> hand and mentioned
> > this to anyone who would listen though I was
> repeatedly told not to
> > worry about it. Around a year of age the docs
> started taking me
> > seriously and he saw a neurologist who was certain
> he had a stroke
> > at birth and wanted an MRI to confirm this, I told
> her I was sure
> > that the problem was progressively getting worse
> and that didn't fit
> > with a stroke but she blew me off and we waited a
> month for the
> > MRI. They found a VERY large mass in his left
> fronto parietal
> > region (about the size of a fist, and his head
> isn't very large at 1
> > year). The next day they went in and his
> neuro-surgeon said blood
> > that looked like motor oil just started oozing out
> as soon as they
> > cut. Apparently, he has some kind of vascular
> malformation (they
> > have never been more clear than that, though
> cavernous malformation
> > has been tossed around) that had started to bleed
> and had been
> > bleeding in his head for a long time creating a
> calcified cyst
> > around itself and this was putting pressure on his
> brain leading to
> > his symptoms. They removed what they could
> without causing too much
> > damage and he functions quite well at this point.
> Trent still has
> > limited use of his right side, oral motor weakness
> on that side,
> > much difficulty using his right hand and he wears
> a brace on his leg
> > to help him walk, he has a lot of PT and OT
> services to keep us
> > busy. Cognitively he seems to be on target so far
> and he is usually
>
=== message truncated ===


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