Prenatal Stroke Survivor - Where do I start?
 

I am the blessed mother of an incredibly wonderful and beautiful prenatal stroke survivor. My daughter suffered a stroke when I was pregnant with her. We found out when she was 6 months old. Since her diagnosis, she has gone through 1 1/2 years of physical/occupational therapy, however once she reached the age of three, we were told that "there was nothing more they could do for her" yet gave us no other alternatives.

I have done some research on my daughter's condition and realize that this is something she will most likely struggle with for the rest of her life. However, I am also a mother who doesn't believe in settling for what her previous doctors/therapists have told me as far as her treatment goes.

I have looked online for resources in my area, but unfortunately have been unsuccessful.

Does anyone know of a website or physical location I can go to to gain more resources in regards to treatement/therapy options for my daughter?? I am in Sacramento, Ca.

Thank you, thank you, thank you! =0)

Stay blessed!
Megan L.

Your NOT ALONE!!!!
 

WOW!! My little brother suffered a MAJOR stroke at just 6 weeks old. he was infant which is why it was incredibly difficult to tell. He cryed and when we took him to the doctor he said it was normal. Then of course we took him home. This is the part i will never forget he began facing one side and stop crying. When we took him to the ER it was late. They said he suffered a major stroke. He is now 3 yrs old. He cannot walk,talk,eat thriugh his mouth, little noises scare him because his nervous system isnt alert. He gets speech, physical, occupational,vision,and a teacher to the house. he also gets a nurse like once a month to check up. But its extremely painful for my family and I. My mother is constantly crying and we're all (my bros and sisters , and dad) are suffereing in our own way. Some of them are giving hope being as the doctors told us that 80% of his brain was damaged. I, just like you, have not given up on my little brother. I do wish for a better life for him. So im also doing a little research myself and i PROMISe when i find somethig i'll let you know. I also have been researching stem cells ,as you know it may be a cure for more then 70 major illnesses, including brain damage, strokes, paralysis, spinal cord injuries, alzheimers, etc. The list goes on and on. However President Bush disapproved of stem cell research and i find it to be nothing but a show of ignorance. I mean we're talking a cure for more tHAN 70 MAJOR ILLNeSSES.WHERE CAN U GO WRONG!! THINK ABOUT HOW MANY LIVES WE CAN SAVE AND IMPROVE. However obama and hillary clinton approve so im jus going to be patient until then. I do have hope that stem cells can cure my bro and i will never lose hope. JUST AS YOU SHOULDNT EITHER. DO NOT BELIEVE WHAT THESE DOCTORS TELL U. TRUST ME THEY TOLD US SO MUCH CRAP THAT ALL ENDED UP TO BE FALSE. YAH THEY ARE DOCTORS BUT THERE NOT GOD AND SEEING AS IM A STRONGER BELIEVER I DO BELIEVE THAT GOD IS by my side and that there is a guardian angel with ur daughter and my brother seeing as they were both put in such tragic situations at such young age and both made it. GOd Bless u, your duaghter, your husband, and your entire family. My God protect you and keep you strONG in times where negativity surrounds YOU. Like i said When and if i found a good doctor out there i will keeep u informed.

Ok now. Take care. Give ur daughter a big hug from me.:hug

--Jess--

Hey i am prenatal stroke survivor. My 19th birthday is coming up here in a couple of days. I have about 25 percent use of my right hand and about 75 percent use of my right leg. I don't know your exact situation but if i could offer help on procedures or how to function with this disablilty i would be glad to do so.

My cousin's son had a prenatal stroke. He is two years old. He is missing about 30% of his brain. He has trouble with his right hand and his right leg. He had surgery on his brain when he almost a year old, because the lining covering the brain had sliped into the nasal cavity, because there was no bone there. He has also had surgery on his right leg to stretch the tendon and will need more as he grows. I was wondering Brwilley7 how you have dealt with this, what procedures have you had and have you had any surgeries and how many? Thank-you

my sister had a prenatal stroke and with her they used dance as therapy it teache s very good control over the body and she now teaches dance

You didn't mention any speech/language/cognitive issues. Has she been evlauated by a speech pathologist, or are her problems only physical in nature? Also, public schools are required by law to have children assessed and treated, if they qualify. Have you looked into your school system?

Megan

I had a massive stroke when I was 10 months old. I am now 54. There is a lot of websites to look for information.
Google search: infant stroke or prenatal stroke

There also a lot of groups and pages on Facebook.

Find some things she can use to strengthen her hand with at home. Like a squeeze ball, silly putty, puzzle type boards (for hand coordination).

I too do not have full use of my right hand, and had the same prognosis as you. Never had speech issues when I was young and always did very well in school. I like the sciences and arts. Have a computer tech certification and love photography.