I'm new to the site....forgive me if this topic has been covered in the past.  My 7yr old niece was diagnosed in Nov 04....had bil surgery Jan 25 in Boston by Dr. Scott.  She had a very complicated recovery.....including a large stroke (her left arm and leg are flaccid) and increasing intercranial pressure requiring  surgery to drain fluid pressing on her brain stem.  She has recently been transferred to St. Louis Children's for inpatient rehab (we are from central Il).   Thankfully she is recovering remarkably well.  My next fear is her chance of having recurrent strokes.  Does the surgery "correct" the problem or will there always be a high chance of further complications?

Thanks for all the great info on this site!
"Aunt" Lora

Lora,
The surgery helps correct the problem to a certain extent. There will always be precautions that will have to be followed, but most people have a "normal" life after surgery. Also, as this site stresses "everyone's case is different" so I will keep your niece in my prayers and hope all starts going well for her. Hang in there, this disease/disorder is a nasty thing to deal with.
Rena

P.S. Keep reading the infomation on this site and anything else you can get your hands on. Knowledge is definitely Power when it comes to MM.

Lora, My daughter Kathleen is also 7. She had surgery almost 3 yrs ago with Dr. SCott.She too had some severe complications.She suffered a stroke the day before surgery and 2 more between the 2 surgeries(they weren't able to do it all in one surgery).She was left with no use at all of her left side and limited use of her right.She spent a month in a rehab hospital near our home.Kathleen is now walking talking and doing great! She is in first grade and reading writting and doing math.Her left arm and hand is the slowest to coem back but she just started to move her fingers a bit. She can lift her arm to touch her nose.She also has down syndrome so this is just one more obstacle she has overcome to get this far.We are thankful every day that she has had no new strokes since the surgery!! I hope this help you.Recovery can be slow at times but even after 3 yrs Kahtleen is still making great strides forward. If I can answer any other questions please ask away.Prayers for your neice....
Mary Grace

Mary Grace,

What a challenge your family went thru!  We too have seen AMAZING strides with Lauren.....she has been in a inpatient rehab center for only 2 weeks (she is scheduled to be discharged this Friday).....she is walking with a cane.....her left arm remains flaccid; but  has regained so much with her left leg, we remain very hopeful.  She will be going for outpatient rehab at a local hospital....all this and she is only 1 mth post surgery/complications!  Children can certainly beat the odds!!

Thank you all for you well wishes and prayers.....they have obviously made a difference!!

Hugs~
Lora  

Lora,
Glad to hear Lauren is doing better. I am a strong believer that MM is harder on the parents than the kids, they just bounce through it while we pull our hair out with worry.

I'll keep you all in my prayers.

Rena

Lora, I'm so glad to hear Lauren is doing so well.Sounds liek she's up on her feet pretty quickly.Kathleen couldn't walk (and only with a walker) for about 6 months and even then for very short distances.Our goal in rehab before we would take ehr home was that she would be able to sit without assistance,she did it in about a months time.From what I understand it's typical for the legs to come back before the arm.We never give up hope that ehr left arm will be functional again.AS long as we see tiny bits of progress we're happy.Kathleen is amazing she never complains and she's become the queen of adaptions.(very good problem solver).She works soooo hard every minute of every day.I just don't think kids know how to "give up" they go after what they want with such a passion...... She's my hero! Please keep us posted on Lauren's progress.Is Lauren in first grade or second? Kahtleen gets her therapy at school now,and it's quite a busy schedule.She's exhausted at the end of the day and sleeps about 12-13 hrs at night.((((HUGS))) to your family sounds like Lauren has a lot of support.
Mary Grace

mg12061,
          I can't believe Kathleen is able to move her fingers a little, I was totally floored when I read that. I'm not so sure Mandy will ever move her fingers, that is really encouraging though she is much younger than Mandy though. Wow that is so great.
            Nancy
   

Nancy, thanks! We're very excited! Just when we were giving up hope she did it.We started realy forcing her to use it more.I asked the OT at school to work a bit more on this also.She does snack every day with her left hand.She can hold a cracker and bring it to her mouth.She satred moving her middle,ring and pinky fingers.From what the ot told me they are conected by tendons, the thumb and pointer are seperate so we're now working on some movemnet on those.It sems to take a LOT of concentration for ehr to do it and she can do it a few times in a row then that's it for a while.We all get ssoooo excited for her.I say NEVER give up there is just no end to what can be accomplished! Does your daughter ever have movement when she's sleeping in her hand or just as she's waking up?Kahtleen has for a long time.I can tickle her hand or when she's waking up and stretching her hand moves.This kinda led us to believe the "connection" is there so it's a matter of "working" at it.I also pray every night that Kahtleen will not have to go through life without any use of her left hand.I ask for guidance to help her.I will keep Mandy in my prayers...
Mary Grace

mg12061,
              I never really checked Mandy's hand out when she was sleeping believe it or not, I will be tonight and tickling it to see if it reacts. That makes so much sense about the tendons because from the botox injection Mandy's same three fingers are much, much straighter than her thumb and pointer finger. I might try the restraining today and see what happens. Mandy has started a day program Mon. thru Thurs. its for brain injury people only. She's only gone 2 days so far because of the snow here, she loves it, the socialization and they will see by her mental and physical level what type of job she can do....I can't imagine! She has put label on envelopes one day stamped them the next and worked a little on the computer, she is only part time so far as the women who works there is out on maternity leave and Mandy needs help with her pants after toileting. She loves it thinks she's hot stuff. It helps to get me a break to which I must say I don't mind, of course I cried the first day like when the little kids start school. She's so precious I'm so proud of her. I'm so happy for Kathleen tell her keep up the good work.
                       Nancy

Nancy, that sounds great about Mandy! I bet she's happy to be out working. Has the therapists worked with Mandy on dressing and such? Kathleen had a really hard time with dressing but she soooo wants to do it(sometimes).I had to ask the OT to help me to teach ehr because they really hadn't addressed it.It is sooooo much easier when you see exactly what the steps are to make it work with one hand.I never would have figured it out....She can now get her pull up  and pants on and off all by herself.I didn't know this until she was forced to do it.I was a t the market and Kahtleen's older brother was with her.She went into the bathroom,put her potty seat on the toilet pulled her stuff off and then when she was done put  her pants and pull up on(all with just one hand) When her brother told me wha tshe had done, I just about cried! She has a hard time wiht her shirt but we work on it when we can(if we're not in a hurry).To force her to use her left we just work on eating with it,and pulling and pushing things around.She ahs a harder timepushing than pulling.It's very slow but as I said if we see even the tiniest progress it keeps up our hope and tha's what counts.There are ways to help adapt cloths too to help like small loops on pants to help pull them up.I never buy pants with zippers not yet anyway....Our next "undertaking" will be buttons(theres actually a tool you can buy to help with those but her OT seems to think she will be able to do it with a little work.Seh can do snaps so I bought her a coat with snaps instead of a zipper. Thanks for all your encouragment .Sounds like you and Mandy are doing great!! We've all just had to get used to "slow and steady" I guess....
Mary Grace