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
> 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
>
>
>
>
>
> Community email addresses:
> Post message: neurovascular@onelist.com
> Subscribe: neurovascular-subscribe@onelist.com
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> List owner: neurovascular-owner@onelist.com
>
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> http://www.onelist.com/community/neurovascular
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>
>
>
>
>
>
>
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 3
> Date: Fri, 19 Aug 2005 02:25:53 EDT
> From: kidro85@...
> Subject: Re: new to this group -- 2 year old son with vascular malform...
>
>
> Darla,
>
> Your Son is in my thoughts & prayers.
>
> Tony
>
> In a message dated 8/18/2005 6:32:05 P.M. Pacific Daylight Time,
> moonbeam611@... writes:
>
> 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
>
>
>
>
>
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
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