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momofsaa
30-01-09, 09:09 AM
Is there any natural way to remove iron build-up? Beth receives monthly transfusions so her iron is at 1500 last check. I'm not sure the scale but I believe the high end of normal is 700 or 750.
Momtezuma Tuatara
30-01-09, 06:13 PM
What has the hospital said about that?

Other than what's in food, don't give her extra vitamin C.
deesalie
30-01-09, 08:43 PM
Are we talking haemachromatosis?
momofsaa
30-01-09, 11:29 PM
What has the hospital said about that?
They don't start the process to begin removing until it reaches 2000.

Does Vitamin C help bind the iron? Should I cut back on the Vitamin C for myself since I'm bf'ing?
momofsaa
30-01-09, 11:31 PM
Are we talking haemachromatosis?
They don't really call it that. I'm not sure if that's actually a disorder or a symptom. She receives monthly transfusions because she doesn't make blood. With the transfusions comes the iron but then it stays in her body.
Lexie
31-01-09, 05:47 AM
Thalassemia?
momofsaa
31-01-09, 05:53 AM
She has Pearson's. It's a mitochondrial disorder.
Lexie
31-01-09, 09:07 AM
Oh...ouch. That's sad. :(
Momtezuma Tuatara
31-01-09, 07:07 PM
It's hard to say why. Given that her other minerals have the potential to be severely messed, it could just be the Pearson's. Vitamin C increases the absorption of iron by six times, but obviously, this has been going on for a while.

do they give her the blood with the lowest iron rating?
momofsaa
02-02-09, 12:13 PM
do they give her the blood with the lowest iron rating?
I'm not sure they have a way to do that. I've done a lot of research and it seems to be the side effect of frequent transfusions. Chelation is done but it's not a 'nice' procedure as I understand it. I thought I would, as with everything else, seek out another way.
Momtezuma Tuatara
02-02-09, 12:44 PM
I'm not sure there is another way, and I don't know if "Detoxamin" can be used on children, particularly children with mineral issues in general...
momofsaa
02-02-09, 11:09 PM
What about nutritional liver support? The iron build-up is tearing down her liver maybe if I help her liver while we deal with the iron issue.
Momtezuma Tuatara
03-02-09, 12:24 PM
That's where I'm stumped because the best liver support is selenium, vitamin C and milk thistle, but I'm not sure about the vitamin C. You really need to make these doctors sit down and talk all the issues through instead of leaving you hanging like this.