Anyone Else Have a Child That Has Suffered a Stroke as an Infant?

My oldest who is now 15 had a stroke inutero at around 3 months gestation. She was diagnosed with left-hemiparisis (a form of cerebral palsy) at around 8 months old. We did occupational therapy, physical therapy, speech therapy, and early intervention. We were fortunate that the damage done to her brain was minimal. If you haven't already, I highly suggest that you get involved with the Scottish Rite Hospitals. They lead the pack when it comes to care for kids like these, also any care that they provide is free of charge. My daughter will never be an athlete but she is very bright and does fantastic in school. Let me know if you have any other questions.

Hi L.!
My girlfriend has a daugher that had a stroke in utero. It was diagnosed at the baby's 6 mth checkup. Lily is now 23 months old and is walking. My friend found out she has Sjogrin's (sp?) disease (an autoimmune disorder) and that is what caused the baby to stroke. Lily had MRI's too. My friend makes sure her daughter is gettin physical therapy almost 4 times/week. It's very expensive but has made a tremendous difference with her mobility. I can't remember exactly how long it took Lily to walk...I'm sorry. Lily and my daughter are in the same Mother's Day out class. Lily's language seems to be affected too I notice but the extent of it we just don't know yet. My friend doesn't have email but if you would like to talk with her, email me privately and I can get you in touch with her.
B.

L.

when i had my son in 2000 we had a hard and long delivery and he was born with periventricular leukomalacia which is normally a preemie problem but my son was 40 weeks and still had it. it is caused by a brain bleed either in the womb or during or shortly after delivery. we started to worry after we noticed that he was late rolling and sitting up he rolled over at about 8 months and he didnt sit up till he was about 10 months and he didnt cruise until almost a year and didnt free walk till he was 16 months and that is after we had him in ot and pt therapy from about 5months on. he has weakness in his right side and walks with a slight limp after all the therapy and he also has sensory intergration disorder and tactile issues. he also has hyperspasticity in his legs and we have to leg stretches with him to help with that.he also gets upset really easily and he also had night terrors when he was younger(which by the way is very scary to see happen).we just put him therapy and worked with him at home and it was a slow process but it has worked out well for us and he still has bad days and i can always tell when he is tired because he limps more then when he isnt and things of that nature. he was affected in motor skills and not anywhere else thank goodness. i am gonna be putting him back in therapy i think cause he is showing signs of having muscle issues again and therapy seems to really help him.

My grandson had several little strokes when he was in Texas Childrens' Hospital shortly after his birth. He was 11 days old when we were told that he would not live through the night. Well, The Lord had different plans. He is now 8 and a normal little boy. You only notice it when he gets tired. His eye will start to droop and he will kinda drag his leg, but he is doing great. My thoughts and prayers are with you and your son.

Hi there.

I just read your post and although it is a few years ago, I still ewanted to write with some words of encouragement. My husband went through the EXACT same situation as an infant. He is now 34, a business owner, was class president in school and an all around AMAZING man! He still has a limp and weakness on one side but manages just fine and cute as can be! Anyway, if you have any questions about things that helped him, feel free to email me at ____@____.com care and God bless!
KK

L.,
My little man just turned 5 on April 1st. HE was born 3 months early and had a stroke shortly after birth. He is a right hemi. He walked with in a few weeks of turning 2. We use doctors from Cooks. He is doing great. We do OT and PT 2 times a week and speech 1 time a week at Camp Hope. I didn't think he needed speech but we have had some studdering problems. I have to tell you he runs and plays just like the other kids, maybe a little slower at times. He is very smart, but can get frustrated easy when he can't do what every one else finds easy. He always figures out a ay to do it. He just learned how to ride a scooter and swing by him self.
I joined an online support group at ____@____.com
You will get lots of support and tons of information.
I can tell you lots more if you want to e-mail me privately.

G.

Dear L.,

I am sorry to hear about your child's stroke. I would highly recommend that you contact Texas Parent to Parent. They are a wealth of information and will match you with another parent who has shared your experience. Best wishes to you and your family!

Texas Parent to Parent
http://www.txp2p.org/
Toll free:
866-896-6001
Austin:
512- ###-###-####

K.

I just read your post and realize that it was posted more then 3 years ago. I myself had a stroke at the young age of 18 months. It affected my whole right side. To this day I do not really know what caused it but as I get older I really would like to know what caused it and realize that I will probably never know for sure as I am 50 now and most of the medical records are long gone. I would love to chat with you more about this.

YES, I have. My son suffered a stroke in the womb-so I was told. I have my own theories about how it happened. My son is now 20 years old. We didn't find out what was wrong until he was 2 1/2 years old. When he was a baby, he cried excessively, day and night.Every time we went to the dr, he was treated with a cold. He walked by the time he was two, but potty training was a problem, he wore the largest pull-ups they made. He sometimes wanted to hit his head on the wall, we could not figure out why. Finally, it got so bad one night, we went to the ER. They did blood test, urine test, and other test. Then told us we need to see our pediatric dr. We made an appointment, then set up for a CT. It was then he told us our son had suffered the stroke. Both dr's blamed each other, and both dropped us like we had a disease. We took our son to a wonderful neurologist at Cook's Children's Hospital in Ft. Worth, Texas. His name is Mark Laney. My son went to him for 13 years. My son has A LOT of determination. He is very athletic. He played football, basketball and baseball while in school, he now loves weight lifting. He will be starting college this fall. My son is a gift from God. Even though there have been challenges for him. He has taught me more about life then anything or anyone else could have. If you would like more info, or I can help in any way. Please do not hesitate to ask. My email address is ____@____.com Bless.

I am a stay at home mom, with 3 son's. Two college bound, on in JH. I have a wonderful, patient husband.

My son was born with hydrocephalus and apparent weakness on his left side. He is now 9 1/2 and it took until he was 5 for me get the diagnosis of cerebral palsy. Although the possibility of an in utero stroke has not been ruled out, I needed a "label" so he could get services.

He didn't pull up until he was 18 months old, never crawled but scooted sideways like a crab. On his second birthday, he started taking his first steps. Talk about celebration! It was then that his pediatrician and neurologist recommended AFO leg braces to aid his stability since his feet and legs had finally become weight bearing.

He has come a long way since then. He still wears the AFO's on weekdays oon both legs and we give him the weekends off. He can walk without them, but he isn't as stable.

He gets PT once a week. We were in OT for a number of years, but stopped last summer. Our current OT facility focuses on the lifeskills of balance, climbing stairs, riding a bike, etc.

He has use of his left arm, but it is very obviously weaker than the other. He tends to hold it near his body in a way the neuro says is "Posturing". But if you didn't know of his issues and he was just walking or sitting, you probably couldn't tell. (It looks normal, not drawn up or anything when at rest.)

It is frustrating at times for us and him due to his mobility issues. Like when we are walking somewhere, I have to slow way down for him to keep up and his younger brother gets frustrated because he wants to go faster.

He takes his mobility issues in stride. At least on the outside. Once, I overheard another child at day camp ask him why he walked "funny" and he just simply said "I was born that way." The other child seemed satisfied with that answer and then it was talked about no more. I told him to say this if anyone asked and if they had more questions, then they could ask me.

Hope this helps. Feel free to email me if you have any questions or just need a supportive ear.

K. Howell