Hello friends. I need any advice u can give! My daughter is 3 & 2 years post surgery. She has had 6 ear infections in the last year. She has not slept through the night once in 6 months. I am on a mission 2 figure this out. It is crunch time now she starts school in three weeks! I took her 2 an ENT knowing her history with MM he met with us for2 min. & decided she needed tubes in her ears. I've heard its a fairly simple procedure and a quick dip under with anesthesia but we r still nervous. I'm waiting 2 hear back from her neurosurgion 2 find out if we should risk it? We think this tube surgery should be last resort. We want 2 know what could be causing the ear infections.  We have not made an appointment yet for surgery.  Has anyone w/MM had this done? Also even when her ears r fine she wakes up screaming multiple times in the night. She falls asleep great but wakes up any wear from 1 to 10 times a night. What could be waking her up? Like I said I'm on a mission. Have an appointment with an Allergist soon. Also is there anyway 2 find out if someone is having migraines if they can't speak. Any testing that could be done. We also tried elevating one end of her bed slightly in case of reflux.
I think I might loose my mind if we don't get some sleep fast. I feel so bad for her. Thanks Danielle

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.

Hi Danielle,

My oldest (not my MM kiddo) had tubes twice, first when she was around 20 months old, and then again about 18 months later she needed a 2nd set.  In her case, her eustachian tubes were very "flat" so fluid became easily trapped in her ear and made her prone to infections.  She has since outgrown this problem.   

It is a very quick procedure, but does require anesthesia and for that fact alone I think you are on the right path, considering it as a last resort for your child. 

Regarding migraines, I can share my daughter's migraine experience with you.  She began having migraines at age 3.5 (the first MM symptoms, but we of course didn't know it then).  In the beginning, they were always in the morning (sometimes very early in the a.m. - 2 a.m., 3 a.m., but most often on awakening at her regular time).  She would awaken, complaining of neck pain first and then later head pain.  She would be very light sensitive and could not get out of bed the pain was so bad.  She would always vomit (usually multiple times) and then fall asleep for 1-3 hours.  When she'd wake up, she'd usually be extremely exhausted but back to her normal self otherwise.

I wish you success in finding help for these issues with your daughter.

Jennifer

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

Danielle,
My daughter had her surgery last week and everything went great.   At my request then ENT's office sent my daughters paperwork over to the anesthesiologist so that he was aware of her situation before surgery.  The anesthesiologist spoke with us before the surgery about moya-moya and what he knew about it.   I don't know if he new the information before hand or did some studying but he was very well informed. He explained to us what he was going to do and why and the reasoning behind it.  I was very comfortable with the conversation.  Also he scooped her up and carried her into the surgey room which I thought was really great.  After she was put to sleep the doctor did a IV for the reason of moya-moya and also to give her fluids during the surgery.