Hi... I am new to the group, and thought I'd introduce myself... if any of you have any advice/insight/experiences to share, I would very much appreciate it.

My daughter, Daphne, started having seizures at 3 months old.   She also has a coarctation of the aorta (narrowing of the aorta in the heart).   About two weeks ago, following repair of her heart defect, she had a stroke.   An MRI revealed a severe moyamoya, and the neurologist was very pessimistic about Daphne's outcome.   She had a second stroke two Sunday's ago, and was sent home from the hospital under hospice care -- they had prepared us that she would eventually have more strokes and, inevitably, die.

We contacted Dr.  Scott in Boston and Dr. Steinberg in Stanford and sent them Daphne's MRI films.  Today, we got a call from Dr. Steinberg's nurse, Teresa (who is wonderful!!), and were told that Daphne was a surgery candidate, and that they'd like to do her surgery as soon as early March.

Dr. Scott is supposed to get back to us in the next couple of days.

We've just been on this tremendous rollercoaster ride  --- from having a "healthy" baby with developmental delay and a seizure disorder, to having a baby whose had two strokes and was expected to die, to having a baby that is making a decent stroke recovery and who is now a surgery candidate.

I have not seen anyone on this board (granted, I've only been looking for a week or so) who has had a child with symptomatic moyamoya at such a young age.    I would just love to hear other experiences, especially with the two neurosurgeons, Dr. Steinberg and Dr. Scott.

Thanks so much... this board is a great resource!

Jenny

Jenny,

I have a son who has had two strokes and had surgeries.  He is now 19 months old, but he was 7 months old when he had the first stroke and almost 10 months when he had the second.  He was a week from being one when he had his surgeries.  We didn't see Dr. Steinberg or Dr. Scott, but our Neurologist here and the Neurosurgeons thought Trey's surgery was needed ASAP.

When Trey had his second stroke we were told he might not make it out of the hospital.  He did and he is doing great.  He is in OT/PT for his left side, trying to get it to work like it is supposed to.  He is delayed only in mobility at this time.  He does see a speech therapist just because he isn't talking yet, but he can say words and does and I know children who don't have MM that don't talk at this age.  Trey is doing really well though.

I know that it is scary right now.  I am sure that you have already been through so much before all of this.  I am so sorry that you have had to.  The only advice I can give you is to turn to the Lord and give Him your child.  He will take care of her.  He will also take care of you.  I am glad that you are here.  This is a wonderful board and there are so many wonderful people here.  I am sorry that you have to be here though.  Get all of the information that you can and don't give up.  If there are any specific questions that I can answer or try to, please let me know.  I will be praying for your little one and you and your family.

Michell

Dear Jenny,

Welcome to our MM family!  I am sorry that circumstances with Daphne brought you here, but am very happy you found us!  As you continue to read, you'll find this board to be full of information.  Also important, the people here are compassionate, supportive, wonderful people who have traveled this road in one form or another, and love to offer shoulders to lean on.

I can't imagine what you've already endured with Daphne's illness.  Good for you to seek another opinion for her Moyamoya!  Unfortunately, most of the medical profession is not familiar enough with the disease to know to advise treatment options.  You've taken the right steps in contacting Dr. Scott and Dr. Steinberg.  They are by far the most experienced neurosurgeons with this disease, and I would trust either one of them with myself or a loved one.

I will speak from personal experience regarding Dr. Steinberg.  My daughter was 17 when she was diagnosed.  Dr. Steinberg advised surgery within 30 days, as Tara's MM was pretty severe.  She had both sides done, a week apart, last June.  Our experience with Dr. Steinberg, Teresa, and the entire Stanford staff was nothing short of incredible.  While we hope to not have to go through it again, we feel very blessed to have had their expertise and compassion available to us.

As Michell offered, I too am available to try to answer any questions you might have.  Please don't hesitate to post again here or to send me a private message if you wish.  We live about 1/2 an hour from Stanford, so if you end up coming out here, we'd love to meet you and be of support to you during your stay.

For now, we'll add you and Daphne to our prayers.  She sounds like a fighter, and obviously you're not a parent willing to give up!  Know that you're on the right track, and don't hesitate to come back here for support, o.k.?

[smiley=hug.gif], Jill  

Hi Jenny,

Welcome to our mm family! I’m so sorry to hear your precious little one has had so many problems; it breaks my heart!  But I can assure you, if anyone can help; it’s Dr Steinberg or Dr Scott. They’re the leading MM specialists in the country. Dr. Steinberg saved my niece’s life; she had 4 devastating strokes and thanks to him she’s recovering better than we ever expected. He and his staff at Stanford are IMO, the best there is.

May I suggest you look at the Stanford video (The Matthew Wong story)?  It helped us tremendously, and also, learn all you can about moyamoya, the knowledge is comforting for your road ahead. We're also here to help you in any way we can. Please feel free to ask us anything or contact us.

Please know your daughter will be in my thoughts and prayers.

God bless,
Mar

Hi Jenny -

I'm sorry you needed to find us, but I'm glad you did.  I had my surgeries with Dr. Scott (just passed my one year anniversary!)  and he is wonderful!  And you are headed down the right path consulting a MM specialist.  My one advise to you is dont give up hope!  If there's anything I can help you with regarding Dr. Scott or if you want to know about my experiences, please PM or e-mail me.  We are all here to help!  Good luck!

-Shari

I am so sorry that you have been on this rollercoaster ride but it's wonderful that you have found this family. Also that you have already contacted 2 of the MM specialists.My experience started when Kahtleen was diagnosed at 4 yrs old.She had surgery with Dr. SCott in Boston.We live in NY so it really wasn't very far to travel.Dr. Scott and everyone at BCH where just amazing. It was such a relief having nurses and staff who knew soooo much about MM.Dr. Scott is not only an amazing surgeon but a wonderful and caring person.He is respected by the staff more than any other Dr. I have met.I think this really is a reflection of what a great but careing profesional he is.Kathleen had several strokes one very severe.It left her with no use of her left side.No speech and a very weakened right side.Her recovery has been amazing.Children are just so resiliant,she works so hard every day.It's because of this surgery that she is still here today.I'm so glad you didn't settle for the prognosis given to you and found specialists.Please keep us posted.Know that you are in our prayers.
Mary Grace

Like everyone else sorry you and your daughter are going through so much but you are definatly in the right place. I found this website and wonderful family by pure luck after nine months of trying to find information. I did not even know surgery was an option til i met Dj and everyone here. Three weeks after finding this site I went to Stanford and had both of my surgeries by Dr. Steinberg. Dr. Steinberg and his staff are absolutly wonderful people. I have not dealt with Dr. Scott but heard he is great too and you did the right thing contacting them very quickly. I will keep you and Daphne in my thoughts and let us know how things go!

Christy

Hi Jenny...welcome to MM.com !!!!  good to have you here. Cara's adventure with MM started at 2.5 but must have been brewing way before that.  While she did not go to either Dr. Scott or Dr. Steinberg as I wasn't in on this website yet...she was well taken care of at the Mayo in Rochester by Dr. Meyers....and I see you are on the right track...I felt what helped me the most was all the "reading and researching on MM" I did...looking into all of DJ's links, the more I read, the easier the medical terms became...and it got to the point I knew more about it than the local doctors who examined Cara in emergency situations...so that was a good thing...plus you get to know what to ask (trust me I was so worried about Cara that it wasn't until after her surgeries I learned much more and continued to ask)...we are all here and have been through it at different levels.  Will keep Daphne and your family in our prayers...hang in there....keep asking....so glad you kept searching for more answers especially when the doctors gave you the "hospice care" recommendation...but your heart told you differently, you as a Mom only wanted the best for Daphne and heading towards it.

Tight Hugs,  CarasMOM

Jenny,

Just wanted to welcome you to our wonderful and growing family of MM.  I'm sorry you have had to go through this with Daphne, but you are on the right track by consulting a MM specialist like Dr. Steinberg and Dr. Scott.  They are both excellent neurosurgeons in the field in my opinion and from what I have heard about both of them.  So, I would like to reiterate what others have already said, and that is, make sure you respond quickly to this disease as time is of the essence!

In my personal experience, I was diagnosed with MM at 33 years old and thanks to one of my bosses at work, I found this website which helped me tremendously in research and finding a wonderfull support group.  I had surgeries on both sides in November at Stanford with Dr. Steinberg and have no regrets.  Dr. Steinberg and his entire team were very professional.  

Please feel free to contact me if you have any questions.  But please know anyone on this board is here to help.

I will add Daphne and your family to my prayers and hope that you find our family here of comfort to you.

God Bless and contiued  [smiley=hug.gif]

Michelle