Hi everyone,  I just found this sight and hope I will use it.  This is a very frightening and isolating place to be.  My daughter was born 14 years ago w/ massive cysts on her brain, had two craniotomies (shunt was placed) before she was 6 months old.  This was difficult enough.  She has an inoperable cyst on her brain stem.  With all the problems and worry this brought - fast forward to June 18, 2001 when she had a stroke in front of me in our kitchen.  Four days, many tests and a neuroangiogram later, she was diagnosed w/ moya moya as well.  Surgery is not an easy answer for her since  her brain is already built like a "house of cards".  Her doctors feel she has "sufficient collateral flow" for now and will not operate unless they are forced to do so.  Two years ago she had her first grand mal seizure and is now epileptic.  She has always been an exceptionally bright child.  This has been alot for her to absorb, especially given her age (she will be 15 on Hallloween).  I would appreciate any kind of feedback anyone would be kind enough to give.  This is my first time "reaching out".  Thanks.      

Hi Jaimesmom,

Welcome to our family. I’m sorry you had to find us this way, but under these circumstances, we’re glad you did. There is no one who understands what you’ve been through better than the many here. We’ve all traveled this road, one way or another, and want to be there for you in any way we can, to answer any questions, lend support and friendship. There’s so much information on this website, and my advice is always to read all you can. Knowledge is everything with a rare disease.

I’m so sorry to hear of all the problems your daughter has had. God bless ya’s! I have to mention something though. I’m no doctor, and I know nothing about the specifics in your daughter’s case, but I’m still compelled to tell you the main thing we’ve all learnt here, and that is… NEVER say surgery is out, until you get a second opinion from a MM specialist, one who deals with MM on a daily basis. I don’t know if you have or not, and I’m not contradicting anyone’s opinion. I’m just saying, we’ve seen all too often, the devastating results of the many doctors who have said to wait, and heartbreaking outcomes. They may be excellent neurosurgeons, but many are not experts with MM the disease, and because MM is a progressive disease in most cases, with life changing results, and because of the lack of knowledge with MM, many suffer strokes; when perhaps there is in fact help before that happens, IF a second opinion is sought by an expert on moyamoya, the disease. So, I had to mention this fact, just incase you didn’t know there is a difference, because many have been surprised to learn, MM is NOT a death sentence, but waiting unfortunately, could be.

Please feel free to talk to any of us, at any time, and about anything. You both are in my thoughts and prayers.

Mar

Jaimesmom, I'm so sorry to hear of all the hurdles you and your daughter ahve been through.But as everyone ahs stated we're gald you found this group.There is a wealth of support and information here.
   It's wonderful to hear that your in contact with Dr. Scott he really is"the guy" to talk to. I speak from experience.My daughter Kahtleen had several strokes(one very severe and left her wiht no use of her left side) from the mm. Shehad surgery in Boston with Dr. SCott.This was 3 yrs ago she's now 8 yrs old.Kathleen was also born with Down syndrome.After a lot of hard work she has regain much of what she lost, her speech is much better, she can walk, and she's doing great in school.She still doesn't ahve much use of ehr left hand and arm yet.Can I ask where in NY you live? We too live in NY just outside of Albany.Please know your family is in my prayers.Keep us posted I'de love to hear more about your daughter.
Mary Grace

Hi Jaimesmom,

Yes, I would have to agree you’ve sought the leading pediatric MM specialist for your daughter. God bless you! It sounds as though you’ve been through it all, and are doing the best you possibly can for your daughter. Just take it day by day, and please know your daughter is in our prayers. I too believe in miracles. There’s nothing stronger than our prayers, in that they do advance with more progress with this disease.

We’re here for you and your daughter anytime, if not just to talk to.

Mar

To Jill, Mar, Mary Grace,

Being able to speak w/ you (to you) and knowing you understand where my thoughts are coming from is great.  There are many days where I live in a state of denial because it's too emotional to truly "live" it day in and day out.  I try not to let my mind go to the "what ifs" but they are always there.  I heard someone say once that when you are a mother, you are only as happy as your least happy child.  Jaime is by nature a happy child, but I know her road will never be an easy one and it's a given that she will have pain and heartache peppered thoughout her life.  Just beneath the surface for me is a broken heart and unless someone could snap their fingers and take this all away from her, that will never change.  I know that all of you understand what I mean - how do you handle it?  I wanted to mention that I have two younger children, as well.  They are 8 and 10 years old - healthy.  They have seen more than their share and are great kids that love their sister.  Thanks for listening.   xoxoxo

Jaimesmom,

As you see, you have found great support here. We all have been through MM, in one way or another. MM is a very scary thing to have to face, let alone in your circumstances.

I just wanted to say I understand how hard it is to know your child has a lot of heartache in their future, but I feel their attitude will make all the difference in how it affects them. Your daughter has been through so much and still finds things to make her happy, she is a fighter, she will always find happiness, even if it isn't what we would expect it to be.

I have learned by watching my son that there is happiness all around us, if we choose to see it. Even as I write this I see him laughing and being silly. I have learned to do the same, because it gives me something to think about when times get hard. It sounds as though your daughter is blessed with the same ability to see the happiness all around her.

I will keep your family in my prayers.

Rena

Thanks guys,

It helps to keep it all in perspective - and you're right - this was not mine or my husband's plan, but I do believe everything happens for a reason.  There is a purpose to all of this, for sure, and a special place for all of you who take the time to read what I have to say.  "Venting" it helps tremendously - hopefully, I'm finished "venting" for a while.  My 8 year old is making her communion on the 16th of April and we are having it at home (30 family members) - the cleaning alone will keep me busy - lol!!  I plan on checking in daily, even if it's just to say hello - I enjoy our communications.  You're all amazing - xoxoxo

CarasMOM - what a beautiful girl Cara is!  Thank you for reading my posts and sending your response.  Your life has been touched with so much adversity and you can still find the time to reach out to me - I'm truly moved by the amount of love and compassion for others that is given by those on this sight.  I plan on staying here and sharing / giving as well.  I think the world in general would be a much nicer place is it took a cue from the people I find here.  xoxoxo

Jaimesmom,

Wow, your poor daughter has been through a lot.  It sounds like you and her doctors have done everything you can right now.   Have they told you under what circumstances they would operate?


My daughter, Daphne, is 17 months old and just had indirect bypass surgery, done by  Dr. Steinberg in Stanford, CA.   She has had epilepsy since she was three months old (infantile spasms), and we did not find out about her Moyamoya until about two months ago, after she had two strokes.

How bad are the seizures?  Have you had to put your daughter on any medication?    I know how hard it is to watch your child have seizures, and how difficult the different seizure medicines can make things.

Please feel free to email me if you ever want to talk.  My email is moyer305@comcast.net.

Jenny

Hi-

Veronisi - thank you for your prayers.  Jenny - Jaime's doctors will operate when they absolutely have to.  She had a blood flow base line study done after the decision to pull her off the schedule for a revascularization.  Her blood flow is monitored and she is on aspirin therapy.  We all know what the risks are to wait on the surgery, however, because of her "initial" problem, the arachnoid cyst and cyst between her brain stem and cerebellum, that have been shunted, if the "house of cards" situation that has been the case since she is 3 months is disturbed, the "preventitve" surgery alone could tip the scales the other way, meaning for her - c.p., loss of certain functions e.g. walking, talking.  No one w/ Moya Moya would or should accept having to wait on the revascularization being done - but Jaime has continued to grow and progress in a way that defys even her doctor's logic.  They feel that in her particular case, that is so not the norm, that waiting until there is no other choice is necessary for her.  I live with the risks of that.  As for her seizures, they are grand mals and she has been on Topomax since last July and so far, it's working.  Prior to that, she had been on Trileptal and it did not work for her.  I also have Lorazepam to give her if she feels one coming on and Diastat (in syringe form) if they do not stop.  I know that our case is not the usual kind.  I have to believe that Jaime is not singular in this and that there are other children out there in a similar "boat".  I hope my writing about this helps someone else.  I read most of the posts regarding who is having surgery, when and who from this sight (Jill in particular and Mar) is there to lend support to them and their families.  There is such a bond here and hopefully Jaime's story will help others as well.  xoxoxo

Jamiesmom,

I am glad that you found a medicine that works for Jaime's seizures.   We tried about five different medicines, as well as the ketogenic diet, before finally finding a non-FDA approved drug that worked!   It was so frustrating.

Jaime sounds like a very special girl... it amazes me when I hear about what some people are able to go through and overcome.   I wish you and her the best... it sounds like she's getting great care

As for Daphne, we think she is doing really good following her surgeries.  She is very happy and is back to moving both arms pretty well after her strokes (shaking rattles, etc)... she really seems to be recovering well.

The type of seizure disorder that Daphne had, though, causes developmental arrest and regression, so for many months before we found seizure control Daphne just didn't develop at all... at nine months old, she was more like a two month old.  Then, we got control and she started to make progress again, but at fifteen months old she had those two strokes.    We're not sure what the future holds for her.   It could be that the Moyamoya surgery fixes the problem that was causing Daphne's seizures, and it's possible that she could "catch up" to her peers.   It's also possible that she could have any range of disabilities.

Right now, though, we are very content because she is so happy and seems to be making progress every day.

Jenny

Jaimesmom,

Just goes to show you that the doctors don't know everything. When Tyler was born they had to recesitate (sp?) him and then they couldn't get him to gain any weight. He was born with no muscle tone and a cleft palette, so it took him an hour to get an ounce of formula from his bottle, and then he would sleep for an hour. They had sent him home to die. He is now 13 and still has mild CP and a few learning problems, but other than his hand, that he is still regaining use of from his stroke in Dec 2002, he fits in with most other kids he's in school with.

I understand what you say about people being drawn to some children, It seems everyone falls in love with Tyler on sight. Everyone wants to help him to the extreme that I have to warn them that he can do some things on his own and they need to think before helping him.

These children are truely blessings, for without them we would never know how blessed we are. Their strength and fight brings out the best in everyone around them and we, as parents have a front row seat in seeing the miracles they live.

Rena