Anyone else have an LO that had a massive stroke before 1 year old?

[HappiestMom]

is so how are they recovering and what did the Drs say their prognosis was? Also what complications did the stroke cause?

Our little girl was 10 months when hers happened due to extreme pressure from hydrocephalus caused by her brain tumor which was due to be removed only a few days later she just didnt make it until then

she has a trach because her vocal cords were paralyzed...shes blind as far as we know..her hearing is perfectly fine except for some of the higher frequencies and then she has a g-tube because of the trach...

just wondering if anyone can give us some hope for the future since the Drs told us that babies brains are amazing and they dont know how much she'll recover....

 

[Eccleston2011]

First I want to say sorry for your horrible experience.

My daughter had two strokes in utero. We were lucky as they were both small and superficial. When she was born she couldn't move either one of her arms and had a weak leg. They told us they don't know what her outcome would be and it could be anywhere from her not being able to walk or talk to her having a full recovery and functioning normally.

Eight months later Grace is able to army crawl. She has gained full control of her left arm. She is starting to gain control of her right arm. She is able to bare weight on both of her legs and just recently began sitting on her own.

There are many different therapy options and traditional therapy even though its great is not the only way. We take our daughter to a therapy called the Feldenkrais Method or Anat Baniel Method. We are also looking into a therapy called the Snow Drop Program. I would just look around and find something that makes since to you and give it a try, there is no clear cut therapy that works with every child.

There is a wonderful group here in the US called the Children's Hemiplegia and Stroke Association ( CHASA ). They have a wonderful website that has lots of information, and they also have very wonderful Facebook pages that parents ask questions and share stories. I greatly recommend checking it out. There are plenty of families there that have children with severe stroke that can be of more help than I am.

Good Luck!!

 

[HappiestMom]

well we ordered the anat baniel special needs children dvd but it doesnt really help as she doesnt show you specific things you can do and if you arent a physical therapist you dont know what your child needs to work on or house to do it so it was really no help...I would love to go to someone that practices her style but we are in the south east usa and there are not a lot of them and since she has a trach and gtube and all that travel is very hard and not worth hours of driving for one session...

congrats on your little girls recovery though...sounds like she is on her way to great success! B had her first smiling session since before her stroke and surgery and it was just amazing to see...every little improvement counts!

 

[Eccleston2011]

Have you ordered her book? It talks about the nine essentials and how to apply them. It does not give specific examples though because every child is different. We recently took Grace out of the therapy and Im doing everything from home.

There is also a wonderful support page for the Anat Baniel Method. Two actually one is public and the other is private and they have been a huge support for me.

Look for a Feldenkrais Practioner in your area there seems to be more of them than Anat Baniel ones. We took Grace to a Feldenkrais. Anat Baniel was a student of Moshe Feldenkrais and she just expanded on his work a little bit to make it specifically for children.

If you want you can PM me and I can tell you more about what we do with Grace what I've learned through studying different therapies and offer support for you.

I wish you the best of luck with your daughter and please keep me updated!