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Total Entries: 42   Entries Viewed Per Page: 10
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Name Comments
22) Frances Moore 
Location:
managua, Nicaragua
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Tuesday, November 6, 2012 07:14 AM Write a comment

I'm a missionary in Nicaragua ministering to a baby boy of a 15 year old gal. We are pretty sure Matthew has infantile spasms and I'm pretty sure he's had them since birth. His 22year old aunt is doing most the childcare, but they have nothing. He finally has neuorology appt tomorrow. He did have lack of oxygen at birth and really that is the cause. He is now 4 months and the episodes are increasing. Thank you for the information on your site.
21) vanessa elliott 
Location:
nixa,mo
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Saturday, October 27, 2012 06:41 AM Write a comment

Hi I am a mother of four and my daughter that is almost 6 months old and was diagnosed with spasm seizures if you found write me I have many questions. Thx for reading.
20) hafneeda hashim 
Location:
india
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Tuesday, October 16, 2012 07:28 AM Write a comment

hello ,
I am a student of first year studying in India , i am working on a research project on the Neurological disorder West syndrome , for my project i require your help and support.will u plz answer my questions related to the diagnostic methods u adopted and ur xperiences with the child suffering frm west syndrome if there are other parents u knw with such children kindly ask them to contact me if u agree u can email me on hafneeda.alihaider@gmail.com or hafneeda.hashim.16@facebook.com
19) Stefanie Jackson 
Location:
Beaverton, OR
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Sunday, August 19, 2012 01:00 PM Write a comment

Hope you guys are having a great summer! Looks like you had a lot of fun at the cabin! :)
Evan's getting so big and more adorable by the day! It's great to hear he's still improving!
Take care! :)
18) Thuan 
Location:
St. Mary, Maryland
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Tuesday, July 31, 2012 05:39 AM Write a comment

Hi. Thank you so much for sharing these amazing information, photos and videos. I found you guys while searching for some info just to educate myself in case if anything happen to my 1 year old boy.I hope the best for you guys.
17) Erin 
Location:
North Bend, Oregon
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Sunday, July 29, 2012 11:04 PM Write a comment

Hi, I'm one of chandlor's friends who heard of this last year when we were in 5th grade! I'm glad he is getting better:) and hope evan is having a good summer:)
16) Holly G 
Location:
Houston, Texas
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Sunday, July 22, 2012 02:12 PM Write a comment

Thank you so much for sharing your story. My 5 month old was diagnosed with epilepsy a couple of weeks ago, and we are still in the early stages of testing and medication. At this time he is on 3 medications and is still continuing to have multiple seizures each day. I am in the process of researching all that I can, but wanted you to know that it was re-assuring to read your son's story and know that he is happy and doing well, considering all he has been through. I will keep him in my thoughts and will pray that he continues to do well.
15) Jennifer Huffman 
Location:
Corsicana, Tx
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Tuesday, July 17, 2012 06:08 PM Write a comment

Hi, you have a precious little boy. Im so glad he is doing so wonderful. I just want to say thank you because having this website to view has actually put my mind at ease, and gave me some hope for my son. My son was diagnosed with IS, and we have done millions of test,and genetic test, and tried every medication there is and he has not responded to anything. He is now 19 months old and is the happiest baby in world but is still functioning on about a 4-5 month level and not using his hands, and not talking, and can not sit up unsupported. It has been a long hard battle for him, but i can say he is my inspiration,and my little hero. He is the strongest person i know. We have recently found out that they want to remove the right hemisphere of his brain,and at first I told the doctors there was not a chance i would do this. After viewing Evans website and seeing how wonderful he is doing, i a very open to the idea, and now have hope that everything could get better. We have to go for further testing, but chances are he will have to have an operation. Please pray for us, and thank you for posting his story.


Shannon Psenicka Tuesday, October 1, 2013 04:51 PM
Jennifer,
I just wanted to let you know that my thoughts and prayers are with your family! My sister has epilepsy and although she received this at the age of 15 from being kicked in the head by a horse I can relate somewhat to your situation. I know you must be extremely worried and afraid for what will be in the future but God has a plan and I know that he his looking after your little boy as well as your family. Again I know it doesn't help but I will be praying for your son and your family!
14) Kelly Chamberlain 
Location:
Richmond RI
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Thursday, July 12, 2012 10:01 AM Write a comment

Hi,
Just came across your site after just finding out my son's 2 month old has West. just started him on the ACTH. He pretty much has been in the hospital since birth, so he's still like a newborn.
thanks for sharing your son's story with us and he is so cute smile
Kelly C
13) Lina Collier 
Location:
San Diego, CA
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Monday, July 9, 2012 05:10 PM Write a comment

Hello David,

Today my daughter is having her hemispherectomy surgery at Rady Children Hospital in San Diego. We are waiting at hospital lobby right now. She already had her subdural electrode on 7/2/12 but her brain won't respond on stimulation (two times at 6 hours per stimulation) and our last solution was this procedure to hopefully stop her intractable seizures.
We really appreciate your email and support at this difficult time in our live.
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