When I last metioned other meds to Dr Scott he said he prefered the asprirn.
   Other meds have diffrent side effects and that is what he prefered .  That
was a few years ago so he could have changed since then.

Mandy


>From: mdkempes@...
>Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
>To: parentingchildrenwithmoyamoya@yahoogroups.com
>Subject: Re: [Parenting Children with Moyamoya] What Medications Is Your
>Child On Afte...
>Date: Wed, 31 Mar 2004 20:59:01 EST
>
>Annette,
>
>I haven't posted much in quite a while.  My daughter Allison was diagnosed
>last summer (July) and operated on in early November on the right side.  So
>far,
>there are no symptoms
>on the left side.  She has been on 1 baby aspirin per day since her initial
>diagnosis.  According to Dr. Scott, she will be on the baby aspirin for the
>rest of her life.  It sounds like either different doctors prescribe
>different
>follow-up meds or perhaps, the meds are prescribed depending on the history
>and
>severity of the condition....would be interesting to ask Dr. Scott for his
>thoughts....
>
>Good Luck,
>
>Julia
>
>
>[Non-text portions of this message have been removed]
>

_________________________________________________________________
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Ok, Well I guess we are set for Monday, April 5. Austin's surgery
time slot is 7:40am, and we have to be there at 6:00. We are
spending the night at the Ronald McDonald House in Macon on Sunday
night, and then we will have a room while Austin is in the hospital.
I will stay in the PICU with Austin and Doug will stay at RMcD at
night, and then we will have somewhere to eat and take showers, etc.
Austin is excited about staying at Ronald's new house. We have
stayed at one at Egleston in Atlanta before, so he likes to visit
Ronald's house. I hope staying there Sunday will help Austin and let
him not be so nervous.

I spoke with Dr. Troup today, and he said he made sure yesterday the
anethesiologist scheduled for the surgery knew ALL about Moya
Moya :0) so we should be ready to go on Monday.

I will try to post and let eveyone know how he is doing. Please keep
us in your prayers.

Danette

We are keeping Austin and you all in our prayers.  Please keep us
posted.

Heather and Family
--- In
parentingchildrenwithmoyamoya@yahoogroups.com, "dmvcpa_drogers"
<dsrogers93@b...> wrote:
> Ok, Well I guess we are set for Monday, April 5. Austin's surgery
> time slot is 7:40am, and we have to be there at 6:00. We are
> spending the night at the Ronald McDonald House in Macon on Sunday
> night, and then we will have a room while Austin is in the
hospital.
> I will stay in the PICU with Austin and Doug will stay at RMcD at
> night, and then we will have somewhere to eat and take showers,
etc.
> Austin is excited about staying at Ronald's new house. We have
> stayed at one at Egleston in Atlanta before, so he likes to visit
> Ronald's house. I hope staying there Sunday will help Austin and
let
> him not be so nervous.
>
> I spoke with Dr. Troup today, and he said he made sure yesterday
the
> anethesiologist scheduled for the surgery knew ALL about Moya
> Moya :0) so we should be ready to go on Monday.
>
> I will try to post and let eveyone know how he is doing. Please
keep
> us in your prayers.
>
> Danette

Good luck
Jane and family
xxxxx

chbrigger <no_reply@yahoogroups.com> wrote:
We are keeping Austin and you all in our prayers.  Please keep us
posted.

Heather and Family
--- In
parentingchildrenwithmoyamoya@yahoogroups.com, "dmvcpa_drogers"
<dsrogers93@b...> wrote:
> Ok, Well I guess we are set for Monday, April 5. Austin's surgery
> time slot is 7:40am, and we have to be there at 6:00. We are
> spending the night at the Ronald McDonald House in Macon on Sunday
> night, and then we will have a room while Austin is in the
hospital.
> I will stay in the PICU with Austin and Doug will stay at RMcD at
> night, and then we will have somewhere to eat and take showers,
etc.
> Austin is excited about staying at Ronald's new house. We have
> stayed at one at Egleston in Atlanta before, so he likes to visit
> Ronald's house. I hope staying there Sunday will help Austin and
let
> him not be so nervous.
>
> I spoke with Dr. Troup today, and he said he made sure yesterday
the
> anethesiologist scheduled for the surgery knew ALL about Moya
> Moya :0) so we should be ready to go on Monday.
>
> I will try to post and let eveyone know how he is doing. Please
keep
> us in your prayers.
>
> Danette



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[Non-text portions of this message have been removed]

Danette, I was just going through some e-mails and wondering how  is Austin
doing?? I hope all is going well.
Mary Grace


[Non-text portions of this message have been removed]

Wow  I was just going through old mail, and thinking about Austin.I  wrote to
you and asked how Austin was. Then I got to this post......I am so glad that
things are going well and Austin is scheduled for surgery.Your family is in
our prayers.By now I'm sure surgery is over I will pray for a speedy
recovery.Please keep us posted.
Mary Grace


[Non-text portions of this message have been removed]

Good morning everyone. Austin went thru surgery well yesterday, and
is finally resting after a long night. We had not had his DDAVP, so
he was needless to say, drinking and wetting all night long. I
finally convinced the nurse to give it to him around 2 or 3AM, and
not wait until the this morning. They thought they would wait and
get him back on "schedule" @ 7, but he REALLY needed the DDAVP. He
is swollen alot on the right side, and he says his eye feels funny.
He keeps on touch it...but that was expected with the surgery.

Dr. Troup was only able to do one side, the right side. His temporal
arteries were not usable. He immediately consulted with Dr. Scott,
and they decided on another procedure. We will wait 3-6 months, do
another arteriogram, and see if collaterals are growing, and make a
next step decision then. At that point we will know what to do about
the left side and the right side, if collaterals do not grow, and
Dr. Troup said he would be in continuous contact with Dr. Scott.

I am at the Ronald McDonald House now, about the "freshen up", and
when I left, Austin was drifting off to sleep. I left him with Doug,
Gran and Papa.

I will try to post later, to let you know how he is doing.

Danette

Glad to hear that things are going well.  The swelling and 'funny' feeling on
Austin's eye should abate in a day or so.  I think Will's swelling lasted about
36 hours -- it did get worse before it got better.

It was just a year ago that we got the original MM diagnosis for Will. He is now
swimming and taking karate.  T-Ball is next. His only lasting memory of both
hospitalizations was that he got to have ice pops for breakfast.

What a difference a year will make for you guys as well.

All the best,

Ginny
   ----- Original Message -----
   From: dmvcpa_drogers
   To: parentingchildrenwithmoyamoya@yahoogroups.com
   Sent: Tuesday, April 06, 2004 10:38 AM
   Subject: [Parenting Children with Moyamoya] Austin update


   Good morning everyone. Austin went thru surgery well yesterday, and
   is finally resting after a long night. We had not had his DDAVP, so
   he was needless to say, drinking and wetting all night long. I
   finally convinced the nurse to give it to him around 2 or 3AM, and
   not wait until the this morning. They thought they would wait and
   get him back on "schedule" @ 7, but he REALLY needed the DDAVP. He
   is swollen alot on the right side, and he says his eye feels funny.
   He keeps on touch it...but that was expected with the surgery.

   Dr. Troup was only able to do one side, the right side. His temporal
   arteries were not usable. He immediately consulted with Dr. Scott,
   and they decided on another procedure. We will wait 3-6 months, do
   another arteriogram, and see if collaterals are growing, and make a
   next step decision then. At that point we will know what to do about
   the left side and the right side, if collaterals do not grow, and
   Dr. Troup said he would be in continuous contact with Dr. Scott.

   I am at the Ronald McDonald House now, about the "freshen up", and
   when I left, Austin was drifting off to sleep. I left him with Doug,
   Gran and Papa.

   I will try to post later, to let you know how he is doing.

   Danette



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[Non-text portions of this message have been removed]

Hi everyone hope your all well,
Just a quicky, I was watching tv this morning it was about ventouse
birth deliveries, just wondering if any one else gave birth this
way?????
GREAT NEWS ABOUT AUSTIN, HE IS IN MY THOUGHTS ALWAYS, HOPE HE IS
FEELING BETTER SOON     JANE     XXXXXXXXXXXXXXXXXXXXXXXXXX

So glad to hear the good news.

dmvcpa_drogers <dsrogers93@...> wrote:Good morning everyone. Austin
went thru surgery well yesterday, and
is finally resting after a long night. We had not had his DDAVP, so
he was needless to say, drinking and wetting all night long. I
finally convinced the nurse to give it to him around 2 or 3AM, and
not wait until the this morning. They thought they would wait and
get him back on "schedule" @ 7, but he REALLY needed the DDAVP. He
is swollen alot on the right side, and he says his eye feels funny.
He keeps on touch it...but that was expected with the surgery.

Dr. Troup was only able to do one side, the right side. His temporal
arteries were not usable. He immediately consulted with Dr. Scott,
and they decided on another procedure. We will wait 3-6 months, do
another arteriogram, and see if collaterals are growing, and make a
next step decision then. At that point we will know what to do about
the left side and the right side, if collaterals do not grow, and
Dr. Troup said he would be in continuous contact with Dr. Scott.

I am at the Ronald McDonald House now, about the "freshen up", and
when I left, Austin was drifting off to sleep. I left him with Doug,
Gran and Papa.

I will try to post later, to let you know how he is doing.

Danette



---------------------------------
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    To visit your group on the web, go to:
http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

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[Non-text portions of this message have been removed]

I didn't - I had a c-section
Nancy Mc


>From: "Jane" <ginger090177@...>
>Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
>To: parentingchildrenwithmoyamoya@yahoogroups.com
>Subject: [Parenting Children with Moyamoya] ventouse
>Date: Tue, 06 Apr 2004 22:37:15 -0000
>
>Hi everyone hope your all well,
>Just a quicky, I was watching tv this morning it was about ventouse
>birth deliveries, just wondering if any one else gave birth this
>way?????
>GREAT NEWS ABOUT AUSTIN, HE IS IN MY THOUGHTS ALWAYS, HOPE HE IS
>FEELING BETTER SOON     JANE     XXXXXXXXXXXXXXXXXXXXXXXXXX
>

_________________________________________________________________
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I had a csection
mandy


>From: "Nancy McStravick" <nancymcstravick@...>
>Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
>To: parentingchildrenwithmoyamoya@yahoogroups.com
>Subject: RE: [Parenting Children with Moyamoya] ventouse
>Date: Wed, 07 Apr 2004 07:22:50 +0000
>
>I didn't - I had a c-section
>Nancy Mc
>
>
> >From: "Jane" <ginger090177@...>
> >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
> >To: parentingchildrenwithmoyamoya@yahoogroups.com
> >Subject: [Parenting Children with Moyamoya] ventouse
> >Date: Tue, 06 Apr 2004 22:37:15 -0000
> >
> >Hi everyone hope your all well,
> >Just a quicky, I was watching tv this morning it was about ventouse
> >birth deliveries, just wondering if any one else gave birth this
> >way?????
> >GREAT NEWS ABOUT AUSTIN, HE IS IN MY THOUGHTS ALWAYS, HOPE HE IS
> >FEELING BETTER SOON     JANE     XXXXXXXXXXXXXXXXXXXXXXXXXX
> >
>
>_________________________________________________________________
>Sign-up for a FREE BT Broadband connection today!
>http://www.msn.co.uk/specials/btbroadband
>

_________________________________________________________________
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Hi Nancy
Hope everythings okay, Was it this Monday you went to the hospital ?????
I still havnt heard anything, Chloe is well, it is the holidays so been really
busy with Chloe and Thomas   aaaaargh
No there no trouble its just annoying when the weather is rubbish as it has been
all week not much we can do really.
I am learning to drive, failed my test twice though, wish I  could just pass it
would make our life so much easier what with hospital appointments.
I was just wondering about ventouse deliverys as I saw it on a programme other
morning, they were just saying it could cause bleeds on the brain, I gave birth
to Chloe and this procedure was used.
Hope the twins are okay and not causing too much havoc !!!!!!!!!!!!
How are you feeling??????    I enjoyed being pregnant, apart from towards the
end, do you like it ??????   Are you eating anything weird, coal or dirt ??????
With Chloe I was craving salad cream all the time, I ate it on anything,
sheperds pie and salad cream was a favourite.
Chloe got her new splint today it is bright red, it makes a huge difference, so
thats good .
Anyway hope to hear from you soon, have a lovely Easter, hope Emily and Natalie
enjoy lots of yummy eggs
Lots of love from Jane    xxxxxxxxxxxxxxxxx

Nancy McStravick <nancymcstravick@...> wrote:
I didn't - I had a c-section
Nancy Mc


>From: "Jane" <ginger090177@...>
>Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
>To: parentingchildrenwithmoyamoya@yahoogroups.com
>Subject: [Parenting Children with Moyamoya] ventouse
>Date: Tue, 06 Apr 2004 22:37:15 -0000
>
>Hi everyone hope your all well,
>Just a quicky, I was watching tv this morning it was about ventouse
>birth deliveries, just wondering if any one else gave birth this
>way?????
>GREAT NEWS ABOUT AUSTIN, HE IS IN MY THOUGHTS ALWAYS, HOPE HE IS
>FEELING BETTER SOON     JANE     XXXXXXXXXXXXXXXXXXXXXXXXXX
>

_________________________________________________________________
Sign-up for a FREE BT Broadband connection today!
http://www.msn.co.uk/specials/btbroadband



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[Non-text portions of this message have been removed]

Austin update:

We are HOME!!.... and we are so glad. Britleigh,8, was very glad to
have us home, too. Austin's swelling has done very well, and he can
now open his right eye. He still has some swelling around his cheek,
but he looks great.

Thank you all for your thoughts and prayers. We really appreciate
everything you have done. We go back to Dr. Troup for a check-up on
April 20th, and then we will schedule his next arteriogram for 3-6
months. Troup will let us know where in that range he wants to do
it. After that test, we will evaluate and discuss the next step.
Please continue to remember Austin in your prayers. He is still at
risk to have a stroke.


Danette

I am curious....
How many of you have had the Japanese procedure done instead of the
pial? Austin had one of the Japanese procedures done where a strip
of muscle with an artery is used and placed in the brain. I will
have to do my research again to find the name of the procedure,
since we were planning on the pial procedure that Dr.Scott performs
the most.
One great reason, of many, I can commend Dr. Troup for is when he
realized the pial procedure would not work, he immediately pulled
off the surgery, and called Dr. Scott to see what he recommended.
Dr. Troup will be in contact with Dr. Scott over the next couple of
months to decide what step is next for Austin.

Please continue to remember Austin in your prayers.

Danette

Glad to hear Austin is doing well. I will keep you all in my prayers.

dmvcpa_drogers <dsrogers93@...> wrote:

Austin update:

We are HOME!!.... and we are so glad. Britleigh,8, was very glad to
have us home, too. Austin's swelling has done very well, and he can
now open his right eye. He still has some swelling around his cheek,
but he looks great.

Thank you all for your thoughts and prayers. We really appreciate
everything you have done. We go back to Dr. Troup for a check-up on
April 20th, and then we will schedule his next arteriogram for 3-6
months. Troup will let us know where in that range he wants to do
it. After that test, we will evaluate and discuss the next step.
Please continue to remember Austin in your prayers. He is still at
risk to have a stroke.


Danette



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[Non-text portions of this message have been removed]

We are so happy to hear you are home and Austin is doing well.  We
will keep you all in our thoughts and prayers.

Heather
--- In
parentingchildrenwithmoyamoya@yahoogroups.com, "dmvcpa_drogers"
<dsrogers93@b...> wrote:
>
> Austin update:
>
> We are HOME!!.... and we are so glad. Britleigh,8, was very glad
to
> have us home, too. Austin's swelling has done very well, and he
can
> now open his right eye. He still has some swelling around his
cheek,
> but he looks great.
>
> Thank you all for your thoughts and prayers. We really appreciate
> everything you have done. We go back to Dr. Troup for a check-up
on
> April 20th, and then we will schedule his next arteriogram for 3-6
> months. Troup will let us know where in that range he wants to do
> it. After that test, we will evaluate and discuss the next step.
> Please continue to remember Austin in your prayers. He is still at
> risk to have a stroke.
>
>
> Danette

my 9 yr old daughter was just diagnosed with moyamoya yesterday.
they say she needs surgery within the next month, this has been very
scary for us and we are looking for support from others that have
gone through this.  we live in california, in what they call
the "central valley".  we were going to valley childrens hospital in
madera, but trying to get her case transferred to Stanford.  does
anyone have any suggestions or recommendations on anything?

we are thankful that she has not had a stroke, but has the signs or
the "tia's" that go along with it.  they did the angiogram yesterday
and told me it was much worse then what they thought it was, its
affecting both sides of her brain, more so on the right side.

can anyone help??

Hi,
My niece has Moyamoya but the gorup here are mainoy parents.  they
are mostly in the US, so will not be logged on for a while.  They
will give you all the detaisl you need.
It does seem however that Dr. Steinberg and Dr. Scott are the two
most experienced surgeons in the US.  I beleive Dr. Steinberg is in
Stanford, so maybe you should check that out.

It's really good that your daughter has not had a stroke yet.


--- In parentingchildrenwithmoyamoya@yahoogroups.com, "mislittlefoot"
<mislittlefoot@y...> wrote:
> my 9 yr old daughter was just diagnosed with moyamoya yesterday.
> they say she needs surgery within the next month, this has been
very
> scary for us and we are looking for support from others that have
> gone through this.  we live in california, in what they call
> the "central valley".  we were going to valley childrens hospital
in
> madera, but trying to get her case transferred to Stanford.  does
> anyone have any suggestions or recommendations on anything?
>
> we are thankful that she has not had a stroke, but has the signs or
> the "tia's" that go along with it.  they did the angiogram
yesterday
> and told me it was much worse then what they thought it was, its
> affecting both sides of her brain, more so on the right side.
>
> can anyone help??

You are very lucky to get a diagnosis before a stroke. I am in CO and took my
son to Stanford for surgey last June, he was 11 then. Make sure the doctors
answer all the question you come up with, and let your daughter know that the
surgey might seem scary, but she will heal fast from it. Feel free to email me,
I will try to help all I can.
My son had a stroke in Dec and we had to wait till June for the surgery, I know
the fear you are dealing with.

mislittlefoot <mislittlefoot@...> wrote:
my 9 yr old daughter was just diagnosed with moyamoya yesterday.
they say she needs surgery within the next month, this has been very
scary for us and we are looking for support from others that have
gone through this.  we live in california, in what they call
the "central valley".  we were going to valley childrens hospital in
madera, but trying to get her case transferred to Stanford.  does
anyone have any suggestions or recommendations on anything?

we are thankful that she has not had a stroke, but has the signs or
the "tia's" that go along with it.  they did the angiogram yesterday
and told me it was much worse then what they thought it was, its
affecting both sides of her brain, more so on the right side.

can anyone help??



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[Non-text portions of this message have been removed]

thank you for the reply, i'm curious to what doctor at stanford did
the surgery on your son?  how is he doing now?  what type of surgery
did he have, and how long was the recovery period for him?

--- In parentingchildrenwithmoyamoya@yahoogroups.com, Rena
<oneofakindco@y...> wrote:
> You are very lucky to get a diagnosis before a stroke. I am in CO
and took my son to Stanford for surgey last June, he was 11 then.
Make sure the doctors answer all the question you come up with, and
let your daughter know that the surgey might seem scary, but she
will heal fast from it. Feel free to email me, I will try to help
all I can.
> My son had a stroke in Dec and we had to wait till June for the
surgery, I know the fear you are dealing with.
>
> mislittlefoot <mislittlefoot@y...> wrote:
> my 9 yr old daughter was just diagnosed with moyamoya yesterday.
> they say she needs surgery within the next month, this has been
very
> scary for us and we are looking for support from others that have
> gone through this.  we live in california, in what they call
> the "central valley".  we were going to valley childrens hospital
in
> madera, but trying to get her case transferred to Stanford.  does
> anyone have any suggestions or recommendations on anything?
>
> we are thankful that she has not had a stroke, but has the signs
or
> the "tia's" that go along with it.  they did the angiogram
yesterday
> and told me it was much worse then what they thought it was, its
> affecting both sides of her brain, more so on the right side.
>
> can anyone help??
>
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
>
>    To unsubscribe from this group, send an email to:
> parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
>
> ---------------------------------
> Do you Yahoo!?
> Yahoo! Photos: High-quality 4x6 digital prints for 25¢
>
> [Non-text portions of this message have been removed]

Dr. Steinberg did the surgery. My son has regained 70% use of his left arm, he
lost all use with the stroke. I don't know the technical term, but my son had
the direct method done, it seems to be the best one for children. The first
surgery went well and he was out of the hospital and site seeing 3 days after
it. The second surgery was a week later and he had a few complication, so he was
in the hospital for a week. My son also had mild Cerebal Palsy so I don't know
if that has slowed the recovery of his arm, but he is doing great by my
standards.

mislittlefoot <mislittlefoot@...> wrote:thank you for the reply, i'm
curious to what doctor at stanford did
the surgery on your son?  how is he doing now?  what type of surgery
did he have, and how long was the recovery period for him?

--- In parentingchildrenwithmoyamoya@yahoogroups.com, Rena
<oneofakindco@y...> wrote:
> You are very lucky to get a diagnosis before a stroke. I am in CO
and took my son to Stanford for surgey last June, he was 11 then.
Make sure the doctors answer all the question you come up with, and
let your daughter know that the surgey might seem scary, but she
will heal fast from it. Feel free to email me, I will try to help
all I can.
> My son had a stroke in Dec and we had to wait till June for the
surgery, I know the fear you are dealing with.
>
> mislittlefoot <mislittlefoot@y...> wrote:
> my 9 yr old daughter was just diagnosed with moyamoya yesterday.
> they say she needs surgery within the next month, this has been
very
> scary for us and we are looking for support from others that have
> gone through this.  we live in california, in what they call
> the "central valley".  we were going to valley childrens hospital
in
> madera, but trying to get her case transferred to Stanford.  does
> anyone have any suggestions or recommendations on anything?
>
> we are thankful that she has not had a stroke, but has the signs
or
> the "tia's" that go along with it.  they did the angiogram
yesterday
> and told me it was much worse then what they thought it was, its
> affecting both sides of her brain, more so on the right side.
>
> can anyone help??
>
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
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i just wanted to say thank you, for the replys here as well as to my
email.  you all amaze me, its been very scary for us, and im worried
about losing my job and insurance, but they keep assuring me it will
be there throughout all of this.  last week they sent me home with a
really cute stuffed kitty for my daughter, and a card with over
$500.00 that was collected for expenses from some of my co-workers
and they tell me there is more to come, to just hang in there and
they are here for us.  my friends and family have been very
supportive.  does anyone know if this is heriditery between
siblings. i have an older daughter that doesn't show any signs but
wonder if i should have her checked out.

thanks again and i'll keep you all posted on her progress, not sure
if i had mentioned this...but her right side is 99% blocked, and the
left is 20% blocked.

take care
hillary

Unless your daughter shows signs there is no need to get her tested. The doctors
haven't decided if there is a genetic link or not. You and your family are in my
prayers.


mislittlefoot <mislittlefoot@...> wrote:
i just wanted to say thank you, for the replys here as well as to my
email.  you all amaze me, its been very scary for us, and im worried
about losing my job and insurance, but they keep assuring me it will
be there throughout all of this.  last week they sent me home with a
really cute stuffed kitty for my daughter, and a card with over
$500.00 that was collected for expenses from some of my co-workers
and they tell me there is more to come, to just hang in there and
they are here for us.  my friends and family have been very
supportive.  does anyone know if this is heriditery between
siblings. i have an older daughter that doesn't show any signs but
wonder if i should have her checked out.

thanks again and i'll keep you all posted on her progress, not sure
if i had mentioned this...but her right side is 99% blocked, and the
left is 20% blocked.

take care
hillary




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[Non-text portions of this message have been removed]

we go monday to stanford for a consult with Dr. Steinberg.  Its a
bit of a relief knowing that we will get to see him soon and see
what he has to say.  i'll keep you all posted.
hillary

Hello Hillary
My names Jane my Daughter Chloe 6, has Moya Moya, and she has had 2 lots of
surgery.
Just a short note to let you know I am thinking of you and your family at this
time.
Please feel free to ask if you have any questions. I cant really help with
advice on Drs and hospitals as I live in the UK, but if you need to ask anything
else thats fine.
This group is a godsend I have spoken to other parents and it has really helped.
Take Care
All the best
Jane

mislittlefoot <mislittlefoot@...> wrote:
we go monday to stanford for a consult with Dr. Steinberg.  Its a
bit of a relief knowing that we will get to see him soon and see
what he has to say.  i'll keep you all posted.
hillary



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>hillary, i just got back from vacation so am just
reading your e-mail.  my daughter was six when she was
diagnosed after nine months of trying to figure out
what was wrong with her.  She's had several small
strokes on both sides of her brain, but has had no new
strokes since surgery.  She was back to school three
weeks after having surgery on both sides of her brain.

Dr. Scott in Boston is her surgeon.  Dr. Steinberg has
a wonderful reputation -- i'm glad you were able to
see him.

I have read that the heredity rate of moyamoya is 10%.
  Last fall my older daughter was having migraines and
altered vision.  Our pediatrician ordered an MRA just
in case.  Fortunately, she does not have moyamoya.

Hope all went well with your appointment at Stamford.

Denyse

  i just wanted to say thank you, for the replys here
> as well as to my
> email.  you all amaze me, its been very scary for
> us, and im worried
> about losing my job and insurance, but they keep
> assuring me it will
> be there throughout all of this.  last week they
> sent me home with a
> really cute stuffed kitty for my daughter, and a
> card with over
> $500.00 that was collected for expenses from some of
> my co-workers
> and they tell me there is more to come, to just hang
> in there and
> they are here for us.  my friends and family have
> been very
> supportive.  does anyone know if this is heriditery
> between
> siblings. i have an older daughter that doesn't show
> any signs but
> wonder if i should have her checked out.
>
> thanks again and i'll keep you all posted on her
> progress, not sure
> if i had mentioned this...but her right side is 99%
> blocked, and the
> left is 20% blocked.
>
> take care
> hillary
>
>





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Hi Denyse,
Can you tell me where the 10% rate came from?  Do you have a pointer
to a website or did this come from Dr. Scott?

Thanks,
Olive.


--- In parentingchildrenwithmoyamoya@yahoogroups.com,
<dareinhart@y...> wrote:
>
> >hillary, i just got back from vacation so am just
> reading your e-mail.  my daughter was six when she was
> diagnosed after nine months of trying to figure out
> what was wrong with her.  She's had several small
> strokes on both sides of her brain, but has had no new
> strokes since surgery.  She was back to school three
> weeks after having surgery on both sides of her brain.
>
> Dr. Scott in Boston is her surgeon.  Dr. Steinberg has
> a wonderful reputation -- i'm glad you were able to
> see him.
>
> I have read that the heredity rate of moyamoya is 10%.
>  Last fall my older daughter was having migraines and
> altered vision.  Our pediatrician ordered an MRA just
> in case.  Fortunately, she does not have moyamoya.
>
> Hope all went well with your appointment at Stamford.
>
> Denyse
>
>  i just wanted to say thank you, for the replys here
> > as well as to my
> > email.  you all amaze me, its been very scary for
> > us, and im worried
> > about losing my job and insurance, but they keep
> > assuring me it will
> > be there throughout all of this.  last week they
> > sent me home with a
> > really cute stuffed kitty for my daughter, and a
> > card with over
> > $500.00 that was collected for expenses from some of
> > my co-workers
> > and they tell me there is more to come, to just hang
> > in there and
> > they are here for us.  my friends and family have
> > been very
> > supportive.  does anyone know if this is heriditery
> > between
> > siblings. i have an older daughter that doesn't show
> > any signs but
> > wonder if i should have her checked out.
> >
> > thanks again and i'll keep you all posted on her
> > progress, not sure
> > if i had mentioned this...but her right side is 99%
> > blocked, and the
> > left is 20% blocked.
> >
> > take care
> > hillary
> >
> >
>
>
>
>
>
> __________________________________
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> Win a $20,000 Career Makeover at Yahoo! HotJobs
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holly is scheduled to have surgery on her right side on may 18th and
on her left side on may 26th with Dr. Steinberg at Stanford.  He
says she is in good health and doesn't expect any complications and
thinks she will have a good recovery.  We have to do a couple more
tests in the next couple weeks, everything looks good so far.

hillary

Thats great!  You will be in our prayers. Keep us posted.
Mary Grace


[Non-text portions of this message have been removed]