hello people this is my first thread on ATS after being a 6 year lurker i have decided to make a thread on something that i have to deal with day in
and day out i have seen some threads about but not many and they are old threads too.
my daughter was 5 3 month ago and she had been ill from the day she was born this went on for over 3 years till we got some answers but it wasn't what
we was hoping for, even though she was diagnosed we are still in the dark and the amount of information we have received about it.
it is called Methemoglobinemia:
My daughter suffers from the Congenital version of this disorder and from what i know as facts of it from the doctors we have seen is,
its a genetic disorder that causes an enzyme in the body to work properly what this does is cause her blood to not pick up oxygen properly so she has
basically suffers from being starved of oxygen this causes alot of symptoms
1) Cerebral palsy
2) Cyanosis (blue skin tone)
3) Acid Reflux
4) Muscle spasm
5) Brown blood
These are the top 5 symptoms of the disorder like with anything medical the list can go on for a long time but these are just the main points of it
that i would like to point out.
here is link to the wiki page about (waited till know because im not 100% sure if its right or wrong its wiki so got to take with pinch of salt
here is a previous ATS thread that has talked about a family that has suffered from it.
I have done research myself too about the condition but im limited to my knowledge all the technical details that they list on sites like the specific
genos it effects and everything are a bit out of my league to get my head around.
My goal is to hopefully get some more answers about the disorder and maybe if people have seen new upcoming medical treatments that could help with
this type of thing in the future (far as we know through doctor there is nothing out there really). At the moment the only treatment we have to give
her is vitamin C tablets, absorbic acid and lamsaprozol its just on a hope there is someone that visits this site that knows something about it.
Any links to other site's that people can provide or anything will be most welcome for all you parents out there you will know what i mean when i say
i feel useless i come to terms that there is no cure because it genetic she is doing very well though. We got told she would never walk or talk she
came second in her first sports day at school this year shes a proper little fighter amazing what kids can accomplish.
Im just trying to find out as much as i can so thank you in advance
(This is my first ever thread on any site never mind just on ATS something i never really done so hope its all understandable and easily read for
edit on 3-2-2013 by Honkwoo1486 because: fixed some errors