My three year old daughter was diagnosed with MM in December 2009. Since then we have had EDAS surgery done on both sides but she has also suffered 6 strokes now since December with the most massive one being after her second surgery. We are still in the hospital (after checking in 2/15 for her second surgery). My daughter is not able to move any of her limbs, does not communicate and is basically dependant for everything. We have had to have a feeding tube placed as well as a trach. Is there any hope? has anyone out there experienced to this level and have any positive outcomes at all as far as healing after strokes?

  I'm so sorry to hear about your daughter's strokes. I would like to share our experience and give you some hope. My daughter survived several strokes. Her most devestating was after her first surgery. She was like an infant, she could not talk or move the while left side of her body and her right side was very weak. She couldn't even hold her head up. She did not need a feeding tube or trach. She was able to eat (with some help) soft food. She was 5 yrs old at the time. She spent a month in a rehab hospital and then very intense therapies at home. She started Kindergarden 5 months later. She was still in a wheelchair but was happy and starting to communicate. Being wirh the other children (she was in a reg. kindergarden) really helped to motivate her and really made her happy. She still get's lots of therapy. She was also born with Down syndrome so Kathleen was no stranger to the therapy and hard work. She was back on her feet a bit with the help of a Rifton gait trainer (fancy walker) after abiout 5 months. We were told that weight bearing was the key to getting movement back. She was out of the wheelchair after about a year. We still have one for longer distances.It's been 8 yrs and I'm happy to say that she's walking(with the  help of leg braces),talking, reading and writting. It may seem like progress is slow at times but looking back she has made some great gains. Some things that helped Kathleen were aqua therapy ( I saw the very first movement after her strokes in a theraputic pool). It loosened her muslces and made movement easier but it needs to be a theraputic temperature. Music was always positive. A big change I saw was the need for sleep. She needed about 12 hours of sleep every night. She still needs lots of sleep at least 10 hours in order to make it through the day. She tires easily and needs frequent breaks and she overheats more easily. The ehat really wipes her out. In fact I had to have the school put air conditioning in her classroom. If I can answer any other specific questions please let me know. Children bounce bakc so much better than adults and I think they have a motivation that won't quit. Feel free to e-mail directly if you wish. I will keep your family in my prayers.
Mary Grace
mgrace5@nycap.rr.com

Thank you both for the encouragement. It is so good to hear that there is some hope. The doctors never seem to have a whole lot of positivity so it is nice to hear directly from people in the same situation. We had a surgeon here in MN who has done quite a few of these surgeries we were told but I am also trying to get in contact with Stanford to get a second opinion to see if the surgeries were a success or what are our options.

I am so sorry to hear about your daughter. I also had my surgery done in MN at the Mayo clinic. I have had only one stroke which lead to my diagnosis of the MM. I agree that expessialy i your case you should see what Standford has to say. Not saying that the doctors in MN are not knowledgeable but they are not known super specialists.

She should bouce back but it may take a while so hang in there. Since she is  yourng she has a highter probablility of recovering.
I will pray you find your answer, and for her speedy recovery.
Becky

THanks to you all for the postings and encouragement. I sent off Addi's info last week to Stanford and just trying to patiently wait for a reply. In the meantime the doctors are telling me that I should prepare a living will for Addi in the chance that she would continute to stroke. I don't know what to do with that or how I am supposed to just make a decision like that. I just keep expecting her to get better and I don't know if that is a realistic or unrealistic goal. I just want my daughter back.

Hi Ishafer,

don't lose hope. We are the parents of a 4 years old baby girl who is diagnosed with moyamoya disease. We come from Poland where the incidence of moyamoya is extremley rare. Our daughter Hanna experienced two ischemic apoplectic strokes within a period of a month (on 12/2008).. As of today, months after Hania's surgery, our daughter feels much better but unfortunately Hania still suffers from very strong body spastic. She doesn't speak or move and she is dependant for everything She can't sleep at night (shy cries a lot). We also have had to feed her by tube but we can feed her by a spoon know  Hania has laying only by long time but now we can seat her in special chair. Your baby girl need time... Hannah also....We know the consequences of the strokes can be sever for her, but we hope that young children come back to their shape very fast. We do everything to help her become independent.  Don't give up although it's very difficult. We often lack power but Hania began to smile and it gives us hope!
Our prayers are with you. Don't give up!

We are now 4 months out since the last stroke and we have yet to see any real improvement. I know they say that stroke recovery can be a long road but wouldn't we have seen at least small signs of improvement by now? My daughter does not move anything unless it is a direct result of the tone that she experiences. She does not respond to any request, shows no signs of expression, can't eat on her own, and the list goes on and on. Finding myself depressed with all that is going on and not knowing what to do or what to expect. Still trying to keep hope but it is very hard at this point to not give up. At what point do you accept what is as how it may be going forward...and how do you deal with basically the loss of everything you had in your child???