Rare medical disorder (Methemoglobinemia: Blue people)

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 sometimes.
methemoglobinemia

here is a previous ATS thread that has talked about a family that has suffered from it.
Blue people

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 all)

Very good thread and thanks for informing us about methemoglobinemia (snf) .Here is something I would like to add:-

Parents may have difficulty in recognizing the signs and symptoms of methemoglobinemia when using these products at home, the FDA says. These symptoms may not always be evident or attributed to the condition. They include:

pale, gray, or blue-colored skin, lips and nail beds
shortness of breath
fatigue
confusion
headache
light-headedness
rapid heart rate

LINK

reply to post by inj3ct0r

Yeah we have been warned to keep here away from benzoates and nitrate because they cause the condition so it would only add to what she had.
Its amazing though benzoates seem to be mostly in dilute pop and it is in our water supply too I mean the amounts in our drinking water is very minor but just goes to show that we dont know what we drinking

Cheers for link though I've met children suffering from the specific type luckily if it's through ingestion they can treat quite easily

Hey there Honkwoo1486
I wanted to share with you there is still little research out there but I have Type 2 Methemoglobinemia and I am 36 and still fighting for my life! I have a blog www.blogger.com... most of it is about dealing with the depression of being sick all the time and selling makeup to help support my family but the one link I really wanted you to read is this one. www.blogger.com.../target=post;postID=5312595211275956268;onPublishedMenu=posts;onClosedMenu=posts;po stNum=0;postname
Don't be discouraged, I know I was and still can get very frustrated at times but I am still living and breathing and I think your little girl has a chance. Your attempt to reach out and find answers speaks volumes. I will be adding more blogs and eventually add some informative YouTube videos on my channel. For know it's mostly makeup tutorials and trying to keep upbeat and positive. Make sure to cherish every moment you have with your little girl!! Thanks Zet