Glucose Transporter Type 1 Deficiency Syndrome 5/6/07

[Carak83]

Thanks for your videos - I am studying neurology in my medical degree currently and being able to see the symptoms of diseases really helps me to understand and remember all the things we need to learn.

You have the most precious little girl and hope she is doing you proud!

[rachkuyps]

You can go to glut1ds.org for more detailed information. Is your baby having issues similar to my daughter in the video? It's a genetic disorder not something acquired. You can message me if you need more information.

[2markdave]

hi i need help to understand what is glocose deficient will do to my bby.... help

[333pinkitty]

shes so petite and adorable..I just want to hug her..

[foreverilive]

I apologize for any comment..i did the research and i see what you meant..they have been working on it for 21 years and they do have something to start off with but there is not enough funding..well this is my last i will not bother nomore and thanks for the feedback.

[rachkuyps]

You clearly didn't understand what I wrote before & like to leave comments on videos to further some sort of anti-medication platform. She isn't "the girl" she's my daughter & her diet is 100% natural & IS her medication. She's missing a gene for a receptor or transporter PROTEIN on the Blood Brain Barrier that lets GLUCOSE into the brain. Google GLUT1 DS to learn more about it. These videos helped a few kids get diagnosed & lots more learn about GLUT1. Further comments will be removed.

[foreverilive]

you know csf has to be pure of any drugs to be allowed to touch the brain..Remember the heart pumps it up to the chroid plexus where it is filtered of all PROTEIN, LIPIDS, and heavy ions..why protein?.You must find out what unpure medication the girl is using and eliminated and replace it with something organic or 100% pure..naturally she was born without it then naturally you must make it..medicine=more side effects.

[foreverilive]

anytime i see the word glucose anywhere the word sugar pops up..i see 3 things to look up.if sugar up or down take cinnomon bark and organic glucose and make a tea to balance the blood sugar naturally..or if she lacks oxygen to her brain take hydrogen h202 therapy..a flyer got hit on his head with hockey puck and went hydrogen h2o2 and was cured.

[rachkuyps]

@foreverilive It's not a blood sugar issue but a CSF glucose issue due to a genetic defect that damaged her glucose transport system. Her body and brain use glucose correctly it's that the glucose needs receptor proteins to get INTO her brain so she doesn't get as much CSF glucose as she needs. We use a ketogenic diet allowing her brain to use ketones to make neurotransmitters rather than using glucose. There is very promising research being conducted on different treatments and even a cure!

[ashleyjuliette22]

Her "meow" sound was so cute. I wish her well. <3

[1993melymely]

she is so cute and sweet but what is it that she has?

[ericravn]

She is so sweet!

[Denae1977]

It is heartbreaking to know something is wrong and not know what... Have they ruled out seizures 100% sure? A simple partial seizure is a possibility- what about cortical visual impairment?

My daughter has seizures and has since just before she turned 2- sometimes it is hard to determine just WHAT is a seizure and what is other stuff she does, my heart is with you guys...

Denae