Hi, my 13 year old son has G6PD Deficiency. We found out he had it when he was 18 months old. Actually, that's when he had his first hemolytic crisis. We didn't know it was G6PD for another few months. Since then, he's had a couple more blood transfusions. I've been stunned at the lack of knowledge by ER doctors about G6PD deficiency. My son's pediatrician is extremely knowledgable now about it. I would suggest you always keep a print out with you when you go to the ER for anything or fill out forms for school when they say "list allergies". You can just say "see attached" and include the laundry list of stuff they can't take.

Let me know if you have any questions and I'll try to answer them.

All we have is a list of things he cannot tolerate which includes broadbeans, quinine based medication and a few other medications. Can't really see many day to day things on it. Wonder if there are different lists?

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Hi my 3-month old son was recently diagnosed with G6PD Deficiency. Is there anyone who has a baby or child with the same?

My daughter was diagnosed to have G6PD when she was 3 months. i am still looking for different list or additional list other from www.g6pd.org... i am from philippines, beans have a different names from different places (countries).
I have been feeding my daugther with chocolates and these contains LECITHIN. I have been obseving her if she would manifest signs but her eyes doesnt look pale to me, her lips aren't pale as well so as her fingernails doesnt turn pale. Thus i was adviced not to take easy and should not feed her with foods that should be avoided.
To other parents out there like me, we should still be vigilant about the foods we give to our kids because our enemy is the kind of love we have for our children. i was wrong giving my daughter foods with chocolates thus there are no manifestations, i was careless not knowing the lecithin is killing the red blood cells of my daughter.
there was this time when she sleeps all day, cant eat and was not even playing i get jumpy till her doctor explained and went further everything about her condition.
xe_fourteen@yahoo.com

My son was diagnosed with G6PD when he was born he is now 9 months old. I must say he eats every thing and anything and I have yet to see any manifestation of anything Thank God. I observe him when I do give him something on the long no no list but as for right now he is as healthy as an ox.

Yes, I have three boys and the oldest has G6PD... i remember when he was three and ate fresh fava beans from the yard, then hours later had to be rushed to the hospital because his urine turned black and his blood was deteriorating quick. Basically he has 72 hours to get a blood transfusion or else he's a goner. Its sad to say it that way, but it's true. I've learned as much as I can about it. It's a strange deficiency... it has something to do with the meditterainian, and malaria. Like for example, for my kid, due to G6PD, he can never get malaria. Just keep them away from fava beans, certain blue food dyes, asprin, and moth balls. It's sad to say, but when you meet any new doctors for your kid, you actually have to sit there and expain to them that your kid has G6PD and they have no idea what it is. You would think they are familiar with it, but here in the USA, they aren't familiar with it. I've actually talked to a nurse who was stationed in the Iraq war back in the 90s and she told me ALOT about it because it was one of the tests they had to perform on US soldiers out there. But don't worry, your child will be fine! Just no fava beans and aspirin! I used to go to all his teachers and educate them by telling them "if he eats any fava beans, he has 72 hours to get a blood transfusion or he's dead!"... so they listened. Plus, make sure it's written down in large bold letters in his school medical reports. If you have any other questions, you can email me at steve94621@ymail.com

It is true that so many people know nothing about G6PD. Almost no doctors and nurses that we have been to know anything about it. So one of the things we did from the beginning is to educate our son all about it. He was 5 when we discovered it and from then on we trained him to avoid broadbeans. Often at school if they served food with broadbeans he would tell them "I am alergic to them and cannot eat them..." Even the school kitchen staff did not believe him and told him to eat it. He remained firm and did not eat them. Then there it the usual letter we have to write to the school to educate them. Every year or so the whole thing repeats simply because people do not believe he can be allergic to a bean. Sometimes when at the doctors and they ask if he is alergic to any medication, I am tempted to answer with "just the usual medication a G6PD deficient child must avoid. Can you remind me of which medications he cannot have?..." Then see the look when they cannot answer without reaching to a book. So in summary, when you have something rare, you have to almost be the specialist (and your child). Now our son is 10 and educated enough to know himself what to avoid.

@freedspirit... trust me, what i do is tell the office staff and the cafeteria staff that my son is FATALLY allergic to fava beans, which is true. Plus, i mention that if he ever did eat them, he would need a blood transfusion within 72 hours or he's a goner... which is also true. Fava beans to my child is just pure poision and they need to be educated at the school. Even if it has to do with actually handling the plant or sniffing the pollen. I've noticed some elementary schools will have gardens outside where the children go and harvest certain plants and herbs. Once i told my child's teacher, she took out the fava plants. I just don't want anything to happen to my child or another child who's parents might not know their child has it as well. Good luck!

Hi. I have a 16 year old son with 0% G6PD deficiency which was found at birth after he reacted to a Vitamin K injection, after which we spent 29 days for the doctors to get it under control. We have been blessed that he has had no other reactions since because we have been very careful. We have found out the things to avoid most are: Mothballs (Napthalene) is the MOST dangerous as it is designed to go into the air and cannot be controlled (is also known to cause Hemolysis in non-G6PD sufferers) as is some Viruses have been known to cause Hemolysis in G6PD sufferers too so best to keep clear of people that are sick (which is a normal practice anyway). Also Aspirin (use Paracetamol instead), Abscorbic Acid (Vitamin C in natural fruit and vegies is ok), Vitamin K, Beans and Legumes (in particular stay away from Broadbeans i.e. Fava Beans), Peanuts (it is actually the mould on the raw peanut that is the problem, not the peanut itself, so doctor suggests to avoid peanuts just to be on the safe side), Blue food colouring (be careful of Blueberries because most have been treated with blue food colouring), Sulphas, and check all medications and other things used for chemicals on the Contra-Indicated "Avoid" List before you use them.

Although on the "Avoid List", my son has been able to eat peas, green beans (flat and round - BUT NOT BROADBEANS), dried peas and lentils, soya sauce, biscuits and sweets that have traces of soy and peanuts without any reaction. However, IF IN DOUBT .. DON'T!! And always check with your doctor if not sure. Also find yourself a good Hematologist to keep contact with and to keep abreast of the condition.

Recognizing Hemolysis Signs in G6PD Deficiency:

Red blood cells carry oxygen to all parts of the body. When they undergo hemolysis, or die, the person will have hemolytic anemia. . The signs and symptoms of hemolytic anemia are:

Abnormal paleness or lack of color of the skin or underside
of eyelids.
Grayish-blue coloring to fingernails or tongue.
Jaundice, or yellowing of the skin, eyes, and mouth.
Fever
Dizziness
Confusion
Headache
Weakness
Intolerance of physical activity
Difficulty breathing
Tea-colored urine, Black faeces
Rapid or strong heart beats (tachycardia)
Heart murmur
Abdominal or back pain or both

Hemolytic anemia, when very severe, can end in death. Destroyed red blood cells are brought to the liver to be broken down to smaller pieces for disposal. One of the end products of this process is bilirubin, a yellowish substance that accumulates in different parts of the body when too much of it is produced. Quite often, bilirubin accumulates in the skin and causes it to appear yellowish. In the worst cases, bilirubin accumulates in the brain and causes mental retardation or death.

Hope this helps.

Sorry forgot to add, if symptoms present, get to hospital asap. I was told we have approx 8 hours max if hemolysis occurs for transfusion.

Bit scarey but if you get onto it asap I would think that you can get to a hospital pretty much from anywhere within that time.

I am looking for info on what my six-year-old son CAN eat, that will not cause him to be sick. Most of the lists available, list things that he should not eat; however, he is having problems eating most foods (stomach and head aches). He was just diagnosed a few months ago.
He will be starting school in a week, and I will need to prepare his food. He was sick at school last year, and missed a lot of days. I don't want him to suffer the same problems again.

hey,My long awaited baby has arrived .and diagnosed with G6pd .please brief me how to raise my child who is having constant jaundice uptill now which is 37 day of him
Thanks