I was wondering if somebody could tell me what the signs of moyamoya are in babies. My daughter is six weeks old and on Friday when I was laying her down on the sofa her eyes started going back and fourth, in a small range of motion but pretty fast. Her arms were to the side and her face got red. It only lasted a second and then it went away. It didn't happen again until later that night. She was admitted to the hospital that night. It happened six more times on Saturday, once on Sunday and none on Monday. Is this something that usually comes and goes or is it normally always there? She has been her normal self besides that. Everytime it happens, it lasts for a second and then that's it. It also only happens when we lay her down....but not all of the time. Thanks for any help you can offer!

Hi,

I would imagine it would be difficult to evaluate an infant for signs of MM, but the one that would know the most about it IMO, is Jenny. She’s been through so much with her precious Daphne, and she still comes back here to help others, God love her, and I know she’d help you in any way she could.

Her story was on the Discovery health channel, Mystery diagnoses, in Jan of this year. DJ downloaded it here if you’d like to see it.  It may answer some of your questions:
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1137005313

She also has a website about Daphne. http://www.daphnestory.com/

If you do suspect MM with your child, I’d like to advise you to seek a MM specialist immediately.

You and your little one will be in my thoughts and prayers.

Mar

 I'm sorry your daughter is having these episodes.It's jsut so scary when you can't figure out what's wrong with your child.I relaly can't add to what Mar has said.I totally agree with her advice. What you described sounds like what Jenny's daughter experienced,if you check out the link for the video you'll be able to see for yourself it's it looks similar to what your daughter is experiencing.Prayers for your daughter and a quick diagnosis.
Mary Grace

I am so sorry to hear about your daughter! That is heart breaking. The symptoms you discribe sound a lot like Daphne.

Where did you hear about moyamoya? Did someone tell you they thought she had it?

It is so unknown, I was just curious.

God Bless!

Sara

Aimee,

I just sent you an email response.  I also, after reading your post, wanted to let you know that the symptoms you describe, even if they were seizures, would not necessarily mean moyamoya disease.  Daphne had a seizure disorder called Infantile Spasms, and this type of seizure disorder can be caused by many different things.  Some of the things are actually curable, and some children actually outgrow the seizures and the parents never know why they occurred (although this is not the norm).

As I mentioned in the email I sent you, though, doctors should take parents' concerns seriously,  and your daughter's symptoms need to be promptly investigated.

Your daughter is in my prayers.   Sometimes the hardest thing is feeling like something is wrong, but not knowing.  Please feel free to email me any time.

Jenny (mom to Daphne)