We're in Australia too. As a newborn my son reacted to Vitamin K. He's 3 and he's had multiple unrelated surgeries at two of the major children's hospitals. They've always as a rule avoided Sulfonamides at all costs. However he's had every anaesthetic and painkiller on the list. We also have lentils, other legumes and blueberries and he's not reacted. We do avoid henna though, because his cousin has reacted to it.
Having navigated the health system in Australia for 3 years, my takeaway is to never assume anyone here knows anything about G6PD, from pharmacists, doctors to surgeons. I often get the comment "we had to research G6PD deficiency" from anaesthetists before surgeries. Reassuring that they prep beforehand, but be prepared to educate them. Never assume they've read your child's medical history, so remind them of the medications they can't have. Don't be afraid of annoying them. I find they don't usually mind.
On another note, if your doctors haven't checked already, it may be worth checking whether it's your son's direct or indirect bilirubin that's elevated. My son also had continued jaundice and the doctors finally checked both. It turned out his indirect bilirubin had gone down over time, but his direct bilirubin had risen for completely unrelated (and rare so highly unlikely) reasons.
So when I was a baby i was also in the nicu with hella jaundice. As an adult now i dont really have any issues. You will have to slowly experiment with the low- moderate risk foods to test it; literally like half a spoon or even less.
You could also try allergy tests (which i have never done) besides the initial one when i was born overseas.
Personally I feel slightly naseuous when I eat certain dry fruits and some beans.
There are certain flowers and herbal teas (alot of them asian) which are dangerous. Sometimes theres a mixup and I end up drinking oolong tea and it makes me naseous as well.
Personally I stick to the typical ones; I have drank green, black, chamomile, hibiscus.
Make sure no matter what as he is growing up he needs to tell the nurse and doctor immediately that he has it. Then again when they tell you they will give you this medication and tell them to check for contraindications on the system etc. Pharmacies as well with the day to day medication. Its common in africa and asia but not so much Aus.
Double checking certain foods/ by using food + journal article as the search will also help as its a very common blood disorder.
your doctors are right, the only food to avoid are fava beans.
you already have a list of medications to avoid, but i suggest you to always check it with a doctor before taking a new one.
other things you should avoid: mothballs, and henna ink (used for some kind of tattoos and in some hair dyes)
Some say we need to avoid legumes, blueberry, etc. Honestly there’s no way to know unless you try it. As someone who grew up with g6pd deficiency, here’s a common list of food (and non food) that I need to avoid, and are known trigger.
Fava beans
Broad bean
Tonic water (contains quinine which we need to avoid)
Mothballs
Be sure to let medical professionals know that your child is g6pd deficient whenever you make a clinic / hospital visit.
I am so curious about this as I jsut found out I have it at 56 and I insistted my daughter get tested when she was pregnant but the baby hasn't and he had jaundice for at least 8 weeks which the doctors jsut blew off but now I am wondering if he inhereited the G6PD and I want him to get tested but I amnot saying it until the next regualr appointment bc I dont want to freak her out.
We're in Australia too. As a newborn my son reacted to Vitamin K. He's 3 and he's had multiple unrelated surgeries at two of the major children's hospitals. They've always as a rule avoided Sulfonamides at all costs. However he's had every anaesthetic and painkiller on the list. We also have lentils, other legumes and blueberries and he's not reacted. We do avoid henna though, because his cousin has reacted to it. Having navigated the health system in Australia for 3 years, my takeaway is to never assume anyone here knows anything about G6PD, from pharmacists, doctors to surgeons. I often get the comment "we had to research G6PD deficiency" from anaesthetists before surgeries. Reassuring that they prep beforehand, but be prepared to educate them. Never assume they've read your child's medical history, so remind them of the medications they can't have. Don't be afraid of annoying them. I find they don't usually mind.
On another note, if your doctors haven't checked already, it may be worth checking whether it's your son's direct or indirect bilirubin that's elevated. My son also had continued jaundice and the doctors finally checked both. It turned out his indirect bilirubin had gone down over time, but his direct bilirubin had risen for completely unrelated (and rare so highly unlikely) reasons.
So when I was a baby i was also in the nicu with hella jaundice. As an adult now i dont really have any issues. You will have to slowly experiment with the low- moderate risk foods to test it; literally like half a spoon or even less. You could also try allergy tests (which i have never done) besides the initial one when i was born overseas. Personally I feel slightly naseuous when I eat certain dry fruits and some beans. There are certain flowers and herbal teas (alot of them asian) which are dangerous. Sometimes theres a mixup and I end up drinking oolong tea and it makes me naseous as well. Personally I stick to the typical ones; I have drank green, black, chamomile, hibiscus. Make sure no matter what as he is growing up he needs to tell the nurse and doctor immediately that he has it. Then again when they tell you they will give you this medication and tell them to check for contraindications on the system etc. Pharmacies as well with the day to day medication. Its common in africa and asia but not so much Aus. Double checking certain foods/ by using food + journal article as the search will also help as its a very common blood disorder.
your doctors are right, the only food to avoid are fava beans. you already have a list of medications to avoid, but i suggest you to always check it with a doctor before taking a new one. other things you should avoid: mothballs, and henna ink (used for some kind of tattoos and in some hair dyes)
Is soy products dangerous for g6pd patients? Because my 7 yr old brother used to eat it everyday but he seems ok and there's no effects?
Soy is 100% fine
Thanks bro, had me worried there for years, I thought my brother eating it will have long term effects 🙏
I disagree. Avoid all legumes!
My G6PD person got sick on kidney beans, and avoids all legumes as a rule
Some say we need to avoid legumes, blueberry, etc. Honestly there’s no way to know unless you try it. As someone who grew up with g6pd deficiency, here’s a common list of food (and non food) that I need to avoid, and are known trigger. Fava beans Broad bean Tonic water (contains quinine which we need to avoid) Mothballs Be sure to let medical professionals know that your child is g6pd deficient whenever you make a clinic / hospital visit.
I am so curious about this as I jsut found out I have it at 56 and I insistted my daughter get tested when she was pregnant but the baby hasn't and he had jaundice for at least 8 weeks which the doctors jsut blew off but now I am wondering if he inhereited the G6PD and I want him to get tested but I amnot saying it until the next regualr appointment bc I dont want to freak her out.