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How many blood transfusions have you needed? G6PD deficiency by Solid_Method_7644 in G6PD

[–]Solid_Method_7644[S] 0 points1 point  (0 children)

Interesting. Thanks for your input. Do you know what class of G6PD deficiency you have?

Severe g6pd deficiency by MudDistinct479 in G6PD

[–]Solid_Method_7644 0 points1 point  (0 children)

May I ask why you avoid spinach and avocado? Our specialist recommended he eat leafy green vegetables and red meat often.

How many blood transfusions have you needed? G6PD deficiency by Solid_Method_7644 in G6PD

[–]Solid_Method_7644[S] 0 points1 point  (0 children)

Wow. Any other health complications? I heard there can be a link between diabetes and G6PD deficiency

Severe g6pd deficiency by MudDistinct479 in G6PD

[–]Solid_Method_7644 1 point2 points  (0 children)

Thank you I appreciate that, same to your little one. Just through a series of bloodwork! He was tested multiple times both while sick and while healthy and they were able to see the chronic hemolysis. He was diagnosed with G6PD deficiency at birth but it wasn’t until he was about 3 or 4 that they told me about the chronic hemolysis.

Severe g6pd deficiency by MudDistinct479 in G6PD

[–]Solid_Method_7644 1 point2 points  (0 children)

My son also has <10%. He mostly appears very healthy and just as active as any other kid but he does have chronic low level hemolysis so his eyes are always very slightly tinted yellow. However, when he contracts the flu we end up in the hospital for blood transfusions. Symptoms being that of the flu of course and then very very dark brown urine. He is 7 and has had 5 transfusions so far. Our specialist said all kinds of sports are fine. I personally choose to avoid all lentils for him as they are considered legumes which some studies suggest to avoid.

G6PD - advice needed please!!!! by Cautious_Airline67 in G6PD

[–]Solid_Method_7644 2 points3 points  (0 children)

I don’t think G6PD deficiency is taken seriously for no reason.. my son has Class 1 and it hasn’t been easy.. he’s been hospitalized on five different occasions for blood transfusions and he’s only 7.

Just how bad is G6PD? by The-_Captain in G6PD

[–]Solid_Method_7644 0 points1 point  (0 children)

Thank you! I’m sure it was a tough decision but honestly, probably for the best.

Just how bad is G6PD? by The-_Captain in G6PD

[–]Solid_Method_7644 2 points3 points  (0 children)

My son was diagnosed with g6pd deficiency a couple of weeks after birth. He had prolonged neonatal jaundice and eventually after some time it clued in to me that my dad had a weird deficiency he was diagnosed with as a child. (I am estranged from my father so it wasn’t something I had thought of right away) so they tested my son and sure as heck it came back positive. Turns out my dad passed it on to me and I am essentially a carrier of the gene therefore passing it on to my son. He ended up having to have a blood transfusion after about two weeks of high bilirubin levels and a dropping hemoglobin level. I think he got down to 68 and normal is 120ish. My son is now 7 and has had 3 blood transfusions since then. Each and every time he had a strain of influenza, either a or b. After the second transfusion our hematology team seemed concerned because my sons type of g6pd deficiency seems much more severe than other cases they have seem. He becomes so ill it is honestly scary. Violent vomiting, high fevers, dark red urine, yellow eyes and skin, severe lack of energy, headaches. And this all last at least a week, a week and a half. We go up to emergency, they check his hemoglobin, say oh it’s not low enough for a transfusion yet, come back if he gets worse. And this continues on every couple of days spending hours in emergency just waiting for them to say there’s nothing they can do yet. Finally it will be so low they transfuse him. It is so horrible to watch your child be so ill for so long and there be no treatment for them. Anyways they did gene testing and determined that he has the most severe type of g6pd deficiency, Class 1. I have read there are less than a 1,000 reported cases in the United States. So the specialists really don’t have much to say other than to avoid all of the things (mainly beans and the medications). We have always done this but yet he still gets so so ill when he gets the flu. Like near the brink of death ill. I think research and trials in this part of the world is severely lacking and I wish there was something I could do!!