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PFAF: Seeking G6PD expert



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sidewalkchalk  




 
 
    
 

Post Thu, Nov 07 2024, 4:44 am
aside, so strange - if I search here in Imamother for g6pd, no results... but if I google "imamother g6pd" I find some old threads... strange!

Friend in Israel has a son diagnosed with G6PD, but she cannot find any expert willing to guide her on how to take care of him - what to eat, what not to eat. Online articles are all contradictory to each other or to her experience (e.g. article X says no peanuts but the kid eats Bamba every day and he's fine... another article says only avoid fava beans but the commenters say if you don't avoid soy you'll die, etc, etc...).

Can anyone recommend an expert in any country who is willing to consult on an individual case?

Thank you in advance!
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amother
NeonPink


 

Post Thu, Nov 07 2024, 5:05 am
I'm not an expert but I have a few boys that have a g6pd deficiency and it doesn't affect them at all.
They were jaundiced as babies.
Dr told them to stay away from feva beans, aspirin and sulfa drugs. (And quinine, there's a little bit in in Schweppes but it's not a very in popular drink anyway!)
We joke that they cannot go to Africa because antimalarial drugs are not approved for ppl with g6pd but that's about it!
Most drs do not make a big deal.
Tell her to relax . It's just something to know and mention to dr when they get prescribed some meds.
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amother
Darkblue


 

Post Thu, Nov 07 2024, 5:30 am
G6PD is a metabolic disease that affects the liver and the blood cells. So she should call any hospital with a metabolic disease unit e.g Sheba, Rambam, Hadassah.

Alternatively, she can call a pediatric gastroenterology office and ask them to recommend a hepatologist which is a gastroenterologist who specializes in liver disease.

Another option is a pediatric hematologist. It's easiest to find one at a children's cancer center since blood diseases and cancer are often treated by the same specialists.
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  sidewalkchalk




 
 
    
 

Post Thu, Nov 07 2024, 6:18 am
amother Darkblue wrote:
G6PD is a metabolic disease that affects the liver and the blood cells. So she should call any hospital with a metabolic disease unit e.g Sheba, Rambam, Hadassah.

Alternatively, she can call a pediatric gastroenterology office and ask them to recommend a hepatologist which is a gastroenterologist who specializes in liver disease.

Another option is a pediatric hematologist. It's easiest to find one at a children's cancer center since blood diseases and cancer are often treated by the same specialists.


Thank you! She's spoken to a hematologist who keeps telling her to look online...!
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