Friday, March 16, 2007

The last 2 month's Recap

I will try to be more regular for whomever is reading this.


Nicole B. said...

I'm reading it! :)Keep writing for us, I'm sure it's therepeutic!

in time out said...

Okay...found you. Phew. I bloggrolled you now, and will check back in. Updates...or move along. You would be a great blogger to follow. Hope all is well. I will send you an invite to the private blog through email. Then you can get to Kims through mine. Love ya. ♥


si tu veux said...

Hey. Are you still getting these comments? Hope you are well. Found the kids blogs. Fun...I hope to see you soon. ♥, stacie

Katie said...

My name is Katie and I live in the Milwaukee area. Our daughter Audrey also has Band Heterotopia. She is four almost five. e-mail me at

si tu veux said...

Miss hearing from you. how are you???

xoxoxxx ♥

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Ananda said...

My name is Ananda and I live in India. Our daughter Rai(Avanti) also has Band Heterotopia. She is 9months. e-mail me at

PML said...

Thank you for writing about your journey with this condition. It helped us better understand for our 10 yr old son, who performs at grade level in a regular classroom, just started getting seizures and MRI results show B-H. Either my son is truly rare, someone is truly wrong, or the med. comm. still has a lot to learn.

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Just wondering if you have any sites that you could recommend for my friend whose daughter has the same band heterotopia as your daugher? I would appreciate it very much.Thanks.I hope your daughter is doing well.

Michelle said...

I just found this site - thank you so much
I learned 3 weeks ago that my son (8 years) has BH. He has been having myoclonic seizures....Our neurologist (at my asking) said most children with HB will not drive, go to college or have a job that supports themselves.
I am looking for a group of people to "talk" with that will fight her stereotype.
I have so much to learn...we are starting keppra next week to help with the seizures but I am also going to try Cranial Sacral Therapy. My sister in law's, sister in law did this for a year and has controlled her seizures for over 3 years with no medication....
anyway - would love to talk more
ALSO - PML I would really like to talk with you - my son is a little behind grade level (3rd) but way ahead grade level in odd things - dates, maps - flags of the world...everything I read about boys with BH is, well, scary....
my email address is

Laura said...

Hi my daughter Autumn has BH, also. She was diagnosed at 11 months, and spent a week in the picu while they tried to get her seizures under control. My daughter has come a long way since then but she is still very delayed developmentally. She is about to turn 3 in September and does not yet walk or talk. Your blog gives me hope.

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Steve, Kent UK said...

Thank you for sharing your thoughts with us.

Our 8 year old daughter Helen had her first seizure out of the blue 3 years ago and she was subsequently diagnosed with BH.

Our main worry at the moment is to control her seizures which are increasing in frequency with age and her long term education. She has has mild learning difficulties, but we are finding it difficult to have her needs recognised. She also has problems with aggression, possibly exacerbated by sodium valporate.

You have done fantastically well with your care for your daughter. There will be challenges ahead for all of us caring for a child with BH, but also lot's of rewards as they grow up. Here's to the future!

Steve, Kent, UK.

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I have found your blog regarding your daughter with band heterotopia. The dates are not current. I am raising two granddaughters--one with BH.What is your progress? May I communicate with you? Linda Miller

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