Everyone,

My 2 year old daugher had a stroke at the begining of Dec 2005 that took out her whole right side-Im sure there were warning but she couldn,t tell me. Since then they think she has had another TA that took out her speach.  Her leg has come back quite a bit but her arm only seems a little better-I know this is difficult but will it come back? It nearly six months. Any her speach??

Ambers Mummy

I wish I could give you an answer to this.I am still new to Moya Moya.My 4 year old daughter also had a "mini"stroke in December of 2005 which also took out her entire right side.However hers came back within 20-30 minutes.Now she has some weakness with her right hand & leg & we have been told that she will more than likely need physical therapy to prevent permanent damage.Is your daughter in any type of physical therapy for this??I am sorry that I can't offer you any more info and I hope that she gets better.Kids are so tough and don't let things keep them down for long.
Take care & I wish you & your family all the best.
Jennifer

Hi Jennifer,

Sorry to hear about your daughter.  Amber gets physio once a week and their great but they have little exsperience of strokes in children and can`t tell me. So much not knowing whats going to happen with mm and the stroke just want some certainty I think. Thank you so much for replying

Avril

Avril,  It sounds liek your daughter is doing pretty well.My daughter had  severe strokes at 5 yrs old.She lost all use of her left side and had a weakened right side.She was like an infant.That's great that your daugheter's leg is a;ready coming back, it was about a year before Kathleen was able to walk again.We spent a month in a rehab hospital, and she gets a lot of therapy every week.She gets 3 PT,4 OT and 5 speech every week.Kathleen also has Down Syndrome so she had delays before the strokes.I'm happy to say that even after 4 yrs her recovery continues.she is wlaking with the help of an AFO on her left leg and an SMO on her right foot(braces to stabalise).In fact she's gettting pretty fast.Her left arm and hand is very slow coming back and she may not get everything back but I will never give up hope because there's always so amny new therapies and she continues to get stronger even though it's very slow.She has movement at ehr shoulder and some at her elbow,she can concentrate very hard,and open her hand and close it.We're doing Electrical stimualation right now, and I'm hoping to do a very modified version of constraint therapy.Basicall restraining her right hand(assuming she'll tolerate it I wouldn't want to get ehr upset) and having her "play" with her left starting with things that she can definatly succeed at.Kathleen's speech is coming back too,she is putting sentences together more spontainioulsly but still needs helpw with word recall.After the stroeks she couldn't even put together a 2 piece puzzle and now she's reading writting and doing simple math.Things that could have been difficult for her even without the strokes.If I can answer any specific questions just feel free to ask away.YOu can e-mail me direct too at mgrace5@nycap.rr.com I hope your daughter's recovery continues and she gets stronger every day.
Mary Grace

Hi.  My daughter is 2 and a half, and had two strokes at 14 months old.  At the time, she couldn't move her arms or legs, turn her head or suck her pacifyer.  She had issues before her strokes (probably due to chronic severely reduced blood flow), and had seizures and developmental delay (not walking, talking or crawling, but rolling and sitting some).  

Her left side came back first, then her right leg.   It was many months after her indirect bypass surgery before she was using her right arm again.  At first it was just the arm, then she started being able to use her hand to voluntarily grasp again.

It's been more than a year now, and she still is lacking in fine motor skills and still doesn't have speech.  This is not a big surprise to us, though, because she did have significant issues even before she suffered the strokes.  She does, however, move all of her limbs easily and she is beginning to imitate some words (says something that sounds like "mom", and "hi").

I don't know how helpful this is to you, since every situation is different.  But you should know that skills can come back, even many months after a stroke.  I definitely would not give up on her use of her arm or her speech.  Children at this age have so much plasticity in their brain... if one area is damaged, another can take over.  

What kind of services are you getting as far as PT and speech?   Lots of stimulation should help speed the recovery.  Also, has your daughter had surgery?

Jenny

My daughter had a stroke at 18 mos and lost the strength in her right arm and leg and face.  After months of OT she was right back on schedule.  The only after effect of the stroke (she is now 15) was she learned to be left handed.  Luckily she was diagnosed this year with MM and we now have hope that surgery will prevent the TIA's and another stroke.  This website is very helpful.  Good luck and know that small children have the ability to adapt and re-learn a lot better and faster than adults.

Avril,

My son Trey, now almost 3 has had two strokes.  The second stroke left him hemaplegic on the left side (unable to use the left side like the right--partially paralized).  He has been in Occupational and Physical Therapy since he was one.  He does really great with his leg, he does wear an AFO and has had to have botox injections in the left leg, ankle, heel chord, hamstring, arm, thumb, forearm, wrist.  We are currently doing a constraint induced therapy.  This is the second time we have done it.  The first time he had not begun to walk and we didn't have as good results as we have this time.  This is where they cast the good side so that he is forced to use the weaker side.  The first time we did this therapy he had a removable cast but this time he is wearing a permanent cast that gets changed weekly.  I think every case is different.  But with continued prayers and therapy the weaker side will get stronger.  I also think that age has something to do with it.  We were able to put Trey in a play group with other children that had some "disabilities" and also some children that had no problems at all.  After starting the play group he began to do more.  His vocabulary broadened and he started walking and walking better and he did try to use the left hand.  

Good luck, if there are any questions that I can answer or if you just want to talk please feel free to email me: mea_michell@yahoo.com.

Michell

Avril,

My daughter had several strokes at age 8, the day after her first surgery for MM.  SHe lost her speech, ability to swallow, and the use of her entire right side (and she's right handed).  We went to a rehab hospital, and three years later, she's back, but still has some weakness on the right side, and some word finding trouble.

The one thing they told me that helped in the hospital, with regards to her getting her speech back was this: there are two areas in your brain which control your communication.  One controls your ability to speak, and one controls your ability to understand speech, both your own and what is said to you.  The second is much harder to recover - the ability to speak much easier.  My daughter wasn't able to speak for a while, but would follow commands (blink, give me a        up, etc).  Once she started following commands, they all breathed a sigh of relief and told me not to worry.  If the ability to understand comes back, it's only a matter of time before the ability to speak comes back.  They were right for my daughter, but it was so hard to wait!!

Don't worry.  Just keep doing what you're doing, and have faith!

We're keeping you in our prayers!! [smiley=hug.gif]

Kristen

Kristen, our daughter lost her speech also after stroke from MM.  We were wondering, how long was it that your daughter did not talk?
Pat

It was a few weeks later that she started to be able to say a few words at a time, but it was probably a year before she could actually speak enough to communicate on her own.  It will be three years this coming November, and she's still getting speech therapy pretty intensely, as she can still have trouble finding words, and it can be very frustrating.

But remember, my daughter is only one example.  Everyone's brain is different, and will recover at their own pace.  

The other thing the doctor's told me with regards to speech, is that they've seen children who have been able to (and mind you, this was explained to me in very non-technical terms!) move their entire speech center to a different area of the brain, if the area of their brain that normally controls speech was injured beyond recovery.  It's amazing what the brain can do - noone can totally predict how it will react/recover from stroke!

So, have faith and give it some time!!  Believe me, I know how hard the waiting is, but thankfully you have your MM family to lean on!!

Good luck!  I hope that helped!

Kristen

Dear Everyone,

thank you so much for all your advice, help and prayers. Just got back from GOSH( Great Ormond street hostpital) The best known Childrens Hostpital in the UK. Dr Thompson did the left side on Friday-he did the right in April, It went really well and she was up causing trouble within hours-bless. Amber had a little speech before the stroke but it was delayed by the DS. I the last few weeks she has started to babble again eg bbbbbbmmmmmm. She can walk unaided, its very wobble, likes holding hand better,  and she is going into a brace on her foot next week, Little movement in sholder so far. Gets PT 1/2 per week. OT 1/ two weeks and ST 1/ week. Not enough I know realise.  Could someone tell me a little more about electro therapy(may have called it wrong) and contraint???
Thank you - all feeling a little better about it but there has to be a better way to learn patience?

Warmest wishes Ambers Mummy


PS All physios advised not to push walking as ceawling helps the arm/hand?

Everyone at GOSH was lovely