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Post by Christina on Oct 30, 2018 3:04:56 GMT -5
Hi Alisha, how is your little girl? I know these posts are very old but as we are going through the same thing right now I would love to hear from you. Best regards and I hope to hear from you xxx |
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elise
New Member
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Post by elise on Oct 30, 2018 12:16:50 GMT -5
Christina, I’m reaching out, because my little one (only one year old) was diagnosed by genetic testing and one of her variants is very rare. She has been on a special formula that the Mayo Clinic confirmed her body was processing safely. She sees a metabolic geneticist who is the one who wouldn’t give up and who helped finally get a diagnosis. I tried to message you personally but wasn’t able to.
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Post by ukbill on Nov 5, 2018 17:07:52 GMT -5
The key point to make here is the diet i.e the safe Fructosemia diet is safe for all the main types of Fructosemia. There are uncharted genes in play the effects of we do not know yet. This confuses people a lot.. me not the least  However one thing seems to be universal we do a lot better on a very low Fructose diet! It may be we need low fructose and no cows milk products, or low fructose and avoiding gluten and wheat or some other mix.. the universal thing is LOW FRUCTOSE. It seems we all do best on as low a fructose level as it is posible to achieve, I do not think it is really practicable to get to absolute zero, however we need to be in the milligrams a day range. This means less than 1/10th of a teaspoon full a day! So if something has 2g of sucrose in it that is 10 days worth! Or 1g of Fructose. Given the contamination of solid Glucose which we know is there 5g of solid glucose (in sweet form or as an ingredient) a day should be the aim. Glucoses's are likely to have different contamination levels so this is just a suggestion to stay safe, some might be so contaminated only 0.5g a day is safe for a long term amount. Unfortunately we simply do not know and these low levels will not bring about a "reaction" but can damage a liver just the same.. long term constant damage to a liver is what we must at all costs avoid! I would rather the amount of fructose ingested came from eating carbohydrates like rice, pasta etc. than from a single sweet. |
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Post by christina on Nov 6, 2018 4:01:27 GMT -5
Christina, I’m reaching out, because my little one (only one year old) was diagnosed by genetic testing and one of her variants is very rare. She has been on a special formula that the Mayo Clinic confirmed her body was processing safely. She sees a metabolic geneticist who is the one who wouldn’t give up and who helped finally get a diagnosis. I tried to message you personally but wasn’t able to. Hi Alisha, I would love to speak to you. Maybe you can find me on facebook? Christina Diamandis Demetriades |
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