Danielle,
My daughter is 3 and has down syndrome. She already has had 1 set of tubes put into ears in 2008 and that was before she was diagnosed with moya-moya. She is scheduled for her second set of tubes this Monday and a audiologist will perform a ABR hearing test while she is still under.  Mattie does have a sleepless and restless routine but some nights are better than others. She does wake up in the middle of the night crying and she kicks the side of her crib.  When either my husband check on her there is nothing wrong and she is still asleep. I have no idea why she does it.  Her problem with her ears is the fluid build up and not ear infections.  Her ear tubes are straight and small which does not work well with drainage.  Every 3 months we see the ENT for a follow up and once a year she has a hearing test done.  She always fails the hearing test because of the fluid in her ears. So then we start he process of antibotics and allergy medicne (Zyrtec) and during the high allergy season I keep her on Zyrtec.  This seems to help her because I think it helps relive that pressure in her ears.  The tube surgery is simple and normally they don't have to use a IV but can just use gas. Know that Mattie has moya-moya things are different.  The neuro-surgeon is requesting a IV line to be put in a hour before surgery to make sure she is hydrated.  I also requested the ENT's office to send the note from the neuro-surgeon to be sent to he anesthesia's office so the the doctor who puts her under is familar with everything before the surgery.  Has your daughter had a hearing test done?  Like I said before my daughter does the routine of sleepless nights and i noticed you commented about raising the mattress for acid reflux.  Mattie has had acid reflux since she was about 3 months old.  Have you tried any acid reflux medicine?  We started out on Zantac and know do Prevacid.  It took about a good 2 weeks before he medicine really worked.  I tried everything with my daughter.  I did the humidifer, a blue light, music, turning the ceiling fan off, turning it on because of the hum. There were nights and still are nights were  I make a little bed on the floor next to her crib and hold her hand to help her sleep.  Have any of the doctors mentioned sleep apnea or maybe night terrors.  I think night terrors occur around the same time every night.  I think it is wise to see an allergist just to get their opinion on it before the surgery.  I know eventually this is a path that I will have to take with her.  I feel your pain and understand the frustration.  I have to say that this past weekend my husband and I went out of town and left the kids for the first time. It has been the first time in who knows how long where one child has not woken me up during the night.  I"m sorry this is long and I'm sure I did not help you but I just understand.  If you have any other questions please let me know.

Best wishes,
Tish H.

Thank you so much for the advice. It was very helpful.  We r still waiting and can't make a decision. Adriana has had a hearing test done every year and it has always been normal. It was interesting 2 hear about the migraines, I have always been worried about it & with the lack of communication how would we know. She has never vomited or seemed sensitive 2 light so I'm beginning 2 think that's not it. Yes still looking into reflux, night terrors, allergies, & sleep apnea. I'll keep u posted. Thanks again, what would I do with out my MM family. Dani