My 4 year old daughter,Paige,has never slept throught the night.She usually wakes up one or two times a night,sometimes 3.Does anyone know if this is related to MM?I have read about sleep problems with people who have MM but am curious to know if it has been linked with MM.She also cries alot about everything.I know alot of it has to do with her being sick most of her life,therefore she has been spoiled by alot of people but sometimes I think there's more to it than being spoiled.The crying has gotten worse since her TIA in December.She also complains alot about feeling sick.At first I thought it was just for attention but today she actually cried because she felt like she was going to vomit.If I remember correctly,this also started after her TIA.I appreciate any info that anyone might have.Thank you.

Hi,

After reading your post, it reminded me of another precious little girl on here named “Daphne”. I was wondering if you saw her story on Discovery health channel, Mystery diagnoses, in Jan. of this year? DJ downloaded it here if you’d like to see it. It may help you.
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1137005313

I think you'll get many answers if you talk to Jenny, Daphne’s Mom. Her ID is “Kotipup” I just read her post where they believe her Daphne also has Neurofibromatosis type I (NF1) like your Paige. Jenny is wonderful and has been through alot, and I know she will help you in any way she can. Perhaps you could PM her or e-mail her to get some answers. She would know much more than I would.

You're both are in my thoughts and prayers.

Mar

  I'm sorry to ehar your daughter's difficulties.As for the sleep thing I can realte to this somewhat.My daughter Kathleen was diagnosed 4 yrs ago(at age 4).We noticed sometime after ehr surgeries that she no longer cried in her sleep.From as long as I could remember she would cry in the early morning hours.This would happen when she was still asleep but almost awake.She would moan and whimper for quite some time befoere she actually woke up.We jsut thought it was her way of waking up becasue she did it for so long.Sometime after ehr surgeries we realised that she no longer did this.I'm assuming that it had soemthing to do with her blood pressure while she was sleeping.She actually had one of her strokes in her sleep,which I was told is common because of the blood pressure changes.Every once in a while she will wake up like this still(scares me a ltitle).She aslo cries when she gets upset or at times when I brush her hair.this can at times escelate to the point that she can't seem to stop or she just feels worse as she cries harder.She really can't seem to tell me what's going on and soemtimes it will make for a tired difficult day for her.She holds her head while she's crying and won't really answer my questions.I try to just hold her tight and calm her down when this happens.I wish she could tell me more that's why I depend on reading all the posts here about what people are experiencing to try and understand what kathleen may be experiencing.Not sure if this helped at all but I hope you can get some answers.
Mary and Kathleen

Sleep like a baby right? I don't know where that saying came from, but it sure wasn't from my house.  That bothers me alot my daughter has never slept well since she was born, after she had her surgeries I thought it would be better, but it didnt. She has bags under her eyes like a 50 year old woman, and she isn't three yet.  I have asked every doctor I come across, and they don't have a clue. Some of them think it is possible headaces, some nightmares, she has spent alot of time in the hospital. I am not sure, sometimes she wakes up in the middle of the night saying "nobody gonna hurt me" makes me think nightmare.  Which is not very often anymore,  but she still wakes up alot for water, but very rarely maybe a couple of times has she slept completely through the night. I wish I could help you with answers, but I can't. Just wanted you to know there are people with similar issues out there.

                          Megans Pop

I would guess her TIAs are messing with her emotions.  I know that there are certain areas of the brain that control emotions/emotional stability/emotional control.  Does she have any permanent damage to her brain and if so, where?  
As to her sleeping, I bet it is from being sick.

I don't know if someone already posted this, I sort of quickly read over the posts.  But I have read on the site that some people, alot of people, hear the blood pumping worse when they lay down and it could interfere with sleeping as well as the headaches.  

My son is almost three, he seems to sleep pretty well, but because of his age I have no idea if he hears the swooshing sound of the blood flowing/pumping or any other sensation that he may be having.  

I just thought that I would throw that idea out there.  

:)Michell

Hi, there.

I know you posted this question a while ago, but something recently changed in our house that might help you, as well.

My 11 year twins have MM, and one of them had several strokes following her first surgery.  She takes some medications that were keeping her awake - while I wanted to help her get some sleep, the last thing I wanted to do was try sleeping pills, and pump even more       into her system!!  However, she was only getting 2/3 of her normal sleep and after a few weeks, we were desperate,  the poor thing was a train wreck!!  

We spoke to our neurologist, and explained our reservations about adding another medication.  He told us to try Melatonin - melatonin is actually a chemical (a hormone, maybe, I'm not sure - chemistry is not my strong point) - that you already have - your brain releases melatonin from a pea sized gland, in response to the darkening sky - it's the way your body regulates your sleep cycles.  Apparently, some people need more melatonin than others, or maybe some medications interfere with or reduce the amount of melatonin your body makes, and they need to supplement it.

Anyway, we tried it.  Now, bear in mind, I know your child is little - mine is 11, but can't swallow pills, so we crush the melatonin and mix it with yogurt or applesauce.  Lo and behold, it works like a charm!!  20-30 minutes after taking it, she doesn't feel     ged, it's not like she feels out of control, she just feels tired, and like she wants to sleep.  She's back sleeping the 11 hours she needs, and feels great in the morning.  My daughter tends to be VERY sensitive to medications (they tend to make her BP and HR go way too high) - and she's not having any side effects from this.

Well, that's my  [smiley=twocents.gif].  I hope it helps.

Here's wishing you and your family sweet dreams!
Kristen

My Daughter Molly is 11 and we are one month post surgery and for the first time in her life she is sleeping through the whole night. Right before surgery it was really bad she was up 4-5 times a night. She used to wander in the house and go to the bathroom several times a night. The closer surgery came to worse the nightmares. After the hospital she was scared to death to sleep for fear of pain in the night. Over time I realized when reading your post she can now sleep through the night for the first time. Is your child afraid of something? I find my daughter has fears i did not even think of, sometimes by something i say. If that does not look better we will have to get it looked at! This can trigger panic in her hours later or even the next day. I do not know if this helps but I thought I would try to help! I do believe this is a MoyaMoya related condition. I have also heard of melitonin I have a sister that gives it to her kids. Check with your Dr. see if it is alright! I send you the best of luck, Charl and Molly! :-/

Thank you all for your replies.Paige still doesn't sleep through the night but some nights are better than others.Usually,she will use the bathroom or get something to drink & then go right back to sleep.I don't think that she is scared of anything,if she is,she hasn't told me about it.I am hoping that her sleeping habits and her crying all the time will get better after her surgery.Her doctor at St.Jude's and LeBonheur Children's wants to do the surgery asap because her condition has gotten worse.So we will see if all of her problems,that we have always thought was her acting out,is actually MM related.Thanks to everyone again.

Hi, I was reading the thread about melatonin, and wanted to comment that Natrol makes a liquid version that you can buy on amazon for only a couple of bucks (although it's only a couple of ounces!).   We used to use it religiously to help Daphne sleep, and I know it works (we used 1mg for Daphne).   Since then, she's gotten better about sleeping on her own, and we are able to give it to her only on nights when she seems to have a little more trouble sleeping... we never had to wean, or anything like that.   We also found, getting Daphne outside for part of the day was a big help --- I think sunlight helps regulate the sleep cycle.

Jenny