My son is 10 yrs. old and was diagnosed with
moyamoya when he was 3. He had a massive stroke, which led
to 2 brain surgeries at Mayo in Mn. He than
continued to have more strokes and more trouble which led
to even more surgery, this time in Stanford, CA. He
has been doctoring with Dr. Steinberg and we are due
to go back again with more trouble this time it is
CSF leak, trouble with his blood pressure, bad
headaches, and being really dizzy. They want us out there
ASAP, but I am unable to till Dec. or early Jan. There
is absolutely NO help in ND with this and the
doctors here are afraid to do anything for my son. Sure
would like someone to chat with sometime or e-mail. My
e-mail is: barbisaak@...

Hi Barb...<br> I would love to chat with you
whenever you need someone to talk to...I have been trying
to work out a time for everyone to come on line and
chat together...It seems like it will probably be
around 9 pm est on a weekday when we do set up the
time...My email addy is Leilei543@.... Feel free to
write to me whenever you need to chat...That is why
this group is here...You have been going through this
longer than I have but I do feel and understand to some
extent your frustration and I am sure that one of the
other members who have been going through this for some
time and have had some of the same struggles will be
of some help to you. I have had similar problems
with some of the doctors who are local not wanting to
help with my son when he is having problems...It is
amazing how unfamiliar most GP's and pediatricians are
with this disease...Most that I have come across have
not even heard of it...I know that you are on the
west coast but if it is possible for you to
travel...The doctor that I took my son to is named Dr. Michael
Scott...He is with Children's Hospital in Boston MA and he
is terrific...I would suggest that you even try to
talk to him or see if he may talk with one of the
doctors you are working with....He has a webpage on the
children's Hospital site and lists his email address there.
You may be able to reach him that way. The site is
listed here on the links page. Take Care and I will keep
you and your son in my prayers.

Hello Everyone,<br> I received a very informative
email from a woman named Seaneen...She is the mother of
a 17 yearold who was diagnosed with Moyamoya at the
age of 5 1/2. It is a very touching story and I would
love to share it with all of you...Unfortunately it is
too long to post on the message board...All that
would like to read the email(That Seaneen wanted me to
share with all of you) please send me an email at
leilei543@... and I will forward it on to you.<br> <br>One
thing that she did mention in the email that I would
like to post is the use of Robitusin DM to block
the<br>cascade-effect damage to the brain cells during TIAs. She states
that anyone who's child has not regrown new blood
vessels should take two tablespoons a day for preventive
measures. I had never heard of this treatment and was
curious to know if anyone else had heard of this
treatment??

I have an 8 year old girl with moya moya. She was
diag. at 6. She had surgery in Boston with Dr. Scott.
She also has williams syndrome. She is doing well.
She just had a fall in feb. and had bleeding on the
brain with it and is now having post concussive
disorder. She has headaches some--but doing well. I can't
wait to hear each of your stories

Hi! I'm new to this "club" and although my son
does not have moyamoya, the surgery commonly used for
treating kids with moyamoya(pial synangiosis) has been
recommended for him. My son had a stroke in March, and has a
narrowed middle cerebral artery with restricted blood
flow. A neurosurgeon and our neurologist in Washington
DC have recommended this surgery. We are seeking a
second opinion from Dr. Michael Scott at Boston
Children's hospital, as we have been told he is the best in
the country. I would love to hear from anyone whose
child had this, or other, surgery, especially if you
had experience with Dr. Scott, Dr. Philip Cogan in
Washington DC, or anyone at Johns Hopkins or at CHOP in
Philadelphia. Thanks so much.<br><br>Sue

My daughter had surgery with Dr. Scott
twice.(once on each side of the brain) He is awesome. We
first went to Duke, who because of her Williams
syndrome(they have very small blood vessels and many times very
stenosed) they would not touch her. Dr. Scott said he
thought he could do it--honestly appeared never to
question it working. It has worked and she is doing great.
He always has time if I call with a question--has
even taken several calls when I call in--which from
the neurosurgons I have met that is rare. When you
talk to him he explaines things like a friend. For
everything I could find when I was looking for someone I was
always directed back to Dr. Scott . If you have any
other questions feel free to contact me. Hannah's last
surgey was 1 year ago 9/12. First one was 11/99. Hope
this helps Mandy

Sue, my daughter -- now 9 -- also had surgery
with Dr. Scott when she was 6. She is doing really
well. If not for the strokes she had prior to surgery,
I don't think she'd have any issues at
all.<br><br>The other plus about having Dr. Scott as your surgeon
is that Boston Children's hospital really knows how
to take care of children who have had this surgery.
The anesthesiologists there developed the protocol
that is used in all the other hospitals that perform
surgery on moyamoya patients. I'm not sure that this
would be the same for your son, but it makes sense that
it would for anyone with compromised blood
flow.<br><br>I can't say enough good things about Dr. Scott and
Children's. He returns phone calls as well as e-mails and he
really cares about children.<br><br>Hope this helps.

Thanks for the replies about surgery with Dr.
Scott in Boston. What surgeries did your children have?
The pial synangiosis surgery has been recommended for
my son, but I've heard talk about a bypass also.
Others say a bypass is technically very difficult with
kids, since their arteries are so small. Also, which
arteries were involved? My son's is his middle cerebral
artery. Thanks for your information.<br><br>Sue

My son also went to Dr. Scott and had the Pial
Synangiosis. His surgery was in August and so far so good. I
have even noticed that there is very little scarring.
I, like many of the other parents, have nothing but
wonderful things to say about Dr. Scott. My son's right
Carotid artery is closing due to Moyamoya and was causing
TIA's and severe headaches prior to the surgery.
Although about 75% of it had closed he was able to
function until earlier this year when he first started to
have problems. Now about 3 months after the surgery he
has stopped having TIA's completely and is down to
about one headache a month(which comapared to the
frequency of the headaches prior to the surgery is a huge
success). If you have any questions or want to chat feel
free to email me Leilei543@....<br><br>Leigh

My daughter had the pial synangiosis surgery on
the middle cerebral artery. First the left then the
right. Normally both are done at the same time but her
right side did not need it when we had the first
surgery done. Scarring with Hannah is also unnoticable.
We went back to see Dr. Scott after her first
surgery and I had to show him the scar for the burr hole.
He even commented at how the scarrs healed so well.
<br>Hope this helps. Mandy

Mandy--<br><br>Thanks for the information. Do you
live in the Boston area? We're in Washington DC and
I've been wondering what it would be like to travel to
Boston for neurosurgery. How long were you
there?<br><br>Thanks.<br><br>Sue

Sue, HI,<br>We were in Boston the for one week.
She went in on Mon. and the fist time was out Thurs
the second on Fri. (she had and arteriogram as well
as surgery the second time) We stayed in town a few
days after her release. We even took her sight seeing
the day after she left the hospital--just for a short
time. I was amazed how fast she seemed to do better. We
actually love Boston. We have traveled up there since to
visit. This Jan. we will be back-my husband is in a dr.s
program in Hamilton, MA and we will go there for 2 weeks.
Hannah's first surgery we drove, the second we flew. She
did fine both ways. As long as no one was in her room
both my husband and I stayed with her. The nights he
could not stay because of a roomate he used the hotel
next door. The "mall" next door had several places to
eat. <br><br>The one thing I was not prepared for that
I wish I had been, was the swelling the day after
surgery. No one had told me-I guess I did not think about
it. However it went away as quick as it came. There
were no rooms on 9 north after her surgery and she had
to stay in icu for an extra day and a half. Surgery
was tues. evening by thurs. lunch they had to get her
a wheelchair and wheel her around icu to entertain
her. The "play" lady was making visits to her there!!
It is amazing how fast kids recover from things like
this. <br><br><br>Let me know any other ways I can
help. Mandy

Sue feel free to email me at harmonmandy@... if you would like,  Mandy

Sue, My son and daughter have both had pial
synangiosis at Children's in Boston and are doing very well,
they both have Moyamoya. We were very pleased with the
results, Erik has just had his one year angiogram this
last October and everything looks wonderful. Katie
will be 2 years post surgery at the end of December
and is doing excellent as well, she suffered two
major strokes before surgery, but none after. She is
recovering very well. Dr Scott is our hero. He is wonderful
to work with and easy to talk to. We have recently
moved to the D.C. area and Dr. Scott recommended Dr.
Cogen if we ever needed anything. We have our first
visit with Dr. McClintock, neurologist,this week, just
a check up. If you would like to contact me with
questions my email is chbrigger@.... We have been
through this difficult process twice. If you need any
advice on the stay in Boston let me know as well.
Heather

Hello,<br> I am in the need to vent so here it
goes...I am starting to get a little discouraged around my
son's progress. I am aware that it can take almost a
year for the surgery to help and new blood vesels to
form but it seems like my son who was doing very well
is starting to do worse. Slowly but shorly he is
starting to go back to the way he was (headaches coming
very frequently) I am starting to get nervous because
he is making a turn for the worse and I am worried
he may start having TIA's again.<br><br>My question
for some of you who's children have needed more than
one procedure done is how long did the doctors wait
before they felt that it was necessary to do something
else??<br>My second question is how have you treated your
children's headaches. My son has been prescribed Tylenol
with Codine and it doesnt seem to help.

Leilei, I know just how you feel. My daughter had
surgery when she was six. She was going along fine until
8 to 9 months post surgery and then she started
having terrible migraines. She would literally lie on
the couch and scream. Dr. Scott told me these
migraines are difficult to control. My daughter's
neurologist tried an experiment with diamox. Diamox attaches
oxygen molecules to the blood stream. She only had to
take 250 mgs a day and it worked. She took it daily
for a couple of months and then we stopped and the
headaches never came back.<br><br>I would ask your
neurologist about it. It has no side effects. If that hadn't
worked then she was going to try calcium channel
blockers which do have side effects. My daughter does
still get a bad headache once in a while but she rarely
even asks for tylenol.<br><br>Then last December she
started having TIAs again. It got to the point that even
my older daughter thought she was having a set back.
We increased her aspirin by a half, she now takes
one and a half children's aspirins a day and that did
the trick. She still does have one once in a while,
but dare I say it, not since the beginning of
October. I probably just jinxed her!!!!<br><br>I hope this
helps. I know how hard it is to see your child suffer.

I have been checking two or three times a day to see if anyone is chating.....i
haven't seen anyone yet...i was just looking for someone to talk to about our
children....Melissa

hello...my name is melissa....i have a daughter
jessica who has moyamoya....she is 7 now but was
diagnosed at 10 months old...she had her first and only
surgery at 14 months...we had no warning signs of what
was comming...she woke up one night very fussy and
could not sit up or use her left side...we ended up at
childrens hospital in little rock arkansas...her doctor was
dr boop...we came to find out that she had 4 or 5
strokes and two seizures before her surgery...she has had
neither since...they tell us that the right side of her
brain is compeletly dead except for a spot about the
size of a quarter...all in all though she is doing
very well...She has some problems with her left side
because of the strokes...she is a little clumsy sometimes
and her left hand is not a lot of use to her but she
is very smart...she scored the highest in her class
on her sat test....we are very proud of
her...Jessica has never had TIA's but just this past year she
has started to have very bad headaches...no one can
tell us why these are happening....well thank you for
letting me get this out to someone who might understand
what life is like with a child with moyamoya...not
many people know what it's like....i'd love to hear
from any of you at any time.

Hi Melissa,<br> I would love to set up a chat. I
was going to try to set it up after the holidays
since everyone is so busy right now. Hopefully we will
have a day once a week that we can all get online and
chat about our children. <br>-Leigh

My son also has the very severe headaches with
his Moyamoya. The doctor has told me that even with
the surgery he may always have these. what do you use
to treat her headaches. My son takes Tylenol with
Codine and that barely helps so I can only imagine how
intense the headaches must be. It is very hard having a
child with Moyamoya. The most difficult part in my
opinion is the lack of knowledge that the local medical
facilities have on this condition.

Looking forward to chatting with
everyone...Melissa emailed me at my email address asking about
having siblings with moyamoya and I thought others might
be interested so here is what I wrote back:<br>Dear
Melissa,<br>I am not sure I can completely answer your
question, but here is our story, Katie our youngest is 4
1/2 was diagnosed with moyamoya 2 years ago after
suffering a stroke. She was scheduled for surgery with Dr.
Scott in Boston 8 weeks after the stroke to give her
brain time to heal and settle, she unfortunately
suffered another stroke 2 weeks before surgery, which hit
the other side. She became a 2 1/2 year old infant
physically, but has recovered remarkably. She continues with
PT, OT, and speech, but is up walking and her speech
is coming along. She has the most difficulty with
speech and fine motor, but she is a determined little
girl and happy. 4 months after katie's surgery her
older brother Erik had a TIA, after everything we went
thru with Katie we knew something wasn't right and
immediately called Dr. Scott in Boston, we had Erik in for a
MRI/MRA two days later, thanks to Dr. Scott's pushing and
a wonderful pediatrician...it showed that Erik had
moyamoya also and had infact had suffered a silent stroke
at least a month earlier...we were shocked. When
Kate was diagnosed we had asked all the Drs. what are
the chances our other kids could have this, they all
said it is so rare they couldn't..we now know better.
Erik is doing very well and has had surgery also with
Dr. Scott. We are so thankful we saw the signs, signs
we didn't see in Katie because she was so little.
<br> <br>Dr Scott recommended that Ellie our oldest
have and MRI/MRA shortly after Erik was diagnosed just
as a precaution and she shows no signs of
moyamoya....we will continue to monitor her and if she ever
shows symptons she will be in for another MRI/MRA and
they have an old one to compare it with. It is
unlikely she has it also, but can't be ruled out....I
think it is very rare for siblings to have it, but
there are other cases. I think they now think there is
some genetic reason for moyamoya, they just don't know
what it is.....hopefully further research will give
them the answers...if I can answer any other questions
please email me. I am so happy to hear you daughter is
doing well....we are hopeful Katie and Erik both
continue to do well. Erik just had his year angiogram and
is should excellent new collateral vessels as did
Katie's at a year. We are celebrating Katie's two year
since surgery on Dec. 28th....a yearly ritual to give
thanks for all we have. Hope to talk to you again and
hoping we can chat on the website. Heather Brigger

I just wanted to say Happy New Year to all of you.  I hope that you and your
families had wonderful holidays and I look forward to chatting with all of you
soon.<br><br>Leigh

Hi I'm new to this site. I have a son with moyamoya.I would like to chat with
other about moyamoya

Hello "idagirl2". My name is Melissa. I"m sorry i
am just now getting back to you. I have not been on
in a while. I don't have long now either but i would
love to hear from you. E-mail me sometimes with your
story and i'll e-mail you back with mine. My daughter
is 7 and was diagnosed at 10 months. Please feel
free to e-mail me anytime but use my hotmail
address...miska_33@.... I don't check this one very often. Nice to hear
from you. Melissa

Hello Ida,<br>  I too would love to chat...You can email me here at
Leilei543@....  I have a 5 year old son with moyamoya.  He was diagnosed
last spring and had surgery this past August.

Does anyone see learning problems/temper tantrums along with MM? Does
your child take dilantin? Problems with wound healing? Please e-mail
me at lovemom355044@... if you would like

Hi, My name is Rhonda. I have an 8yr old daughter who was diagnosed in Jan. and
has had 1 surgery. I have known something was wrong for 2 years-but had
diagnoses of ODD (oppositional defiant disorder), mood disorder and learning
problems. Any of you had any of these symptoms?  I'm trying to get second
opinions and find a good Dr. I'll go anywhere. We have a good surgeon in MN. but
am looking for other information. I feel so alone and can't believe I found
you!!


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Hello Dear friends, I can't believe I've found someone to talk to. My
8 yr old daughter had surgery Jan 02 on one side. The next surgery is
scheduled for June. She has had headaches, learning probs and
tantrums for 2 years. Has anyone else had these? I also am looking
for good Dr.'s to get a second opinion from. We are from Mn but I
will go anywhere! Many questions, but will see if anyone answers
first.

--- In parentingchildrenwithmoyamoya@y..., "lovemom355044"
<lovemom@w...> wrote:
> Does anyone see learning problems/temper tantrums along
with MM? Does
> your child take dilantin? Problems with wound healing? Please
e-mail
> me at lovemom355044@y... if you would like

My 9 year old daughter had surgery on both sides of her head 3
years ago.  She has had several small strokes which have
caused some learning difficulties.  We are working around them
and just this past year she has made some great strides.  I
really think it takes a long time.

I'd be concerned about the wound not healing.  Are you talking
about the surgery site, or does she bruise easily.  My daughter is
on aspirin so she bruises easily.

She does not usually have temper tantrums, but she has had
terrible migraines which could certainly effect behaviour.

You might want to contact Dr. R. Michael Scott at Boston
Children's if you need a second opinion.  He is an expert on
moyamoya.

You can e-mail me at DAReinhart@....

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