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Post by vintage1935 on Aug 10, 2011 20:34:19 GMT -5
Hello everyone,
I am new to this forum, have HFI, and almost 8-months pregnant with my second child. My daughter who is almost nine is also very fructose-sensitive, but not nearly as much as I am.
I wanted to find out how to get a newborn HFI screening done. By the way, we have Kaiser, but I would definitely consider going outside of it to get the proper testing.
Does anyone have any suggestions?
I am pretty sure it is not a part of the regular newborn testing.
Thanks in advance!
Beth
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Post by ukbill on Aug 11, 2011 5:18:30 GMT -5
mmm not sure what Kaiser is.. presuming you are in the USA and that's a medical insurance company? Genetic testing is the only safe test for a new born. If you have HFi and your daughter is showing signs of it also .. why bother? You will identify the condition far faster than any Doctor could anyway. To be safe keep new baby on HFI safe foods just to be sure. I did not react noticeably to the first Sugar I was given but rejected everything other than mothers milk that tasted sweet afterwards. Its that that kept me safe.. hence my advice not to give Glucose to HFI children. Wishing you all the best with your new delivery.. and welcome to the forum to both you and your daughter.  |
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Post by vintage1935 on Aug 11, 2011 10:38:48 GMT -5
Thanks for the prompt response! It does make sense, of course, but I need something official for the extended family and the future school(s), otherwise they will feed my children fruit and sweets regardless of what they're asked (just like they do now with my daughter, so it would be good to get her tested as well soon.)
I will call the genetic testing counselor to schedule this. Thanks!
Yes, I am in the US and Kaiser is a health plan which limits you to something like four doctors to choose from in your state and only one hospital many miles away.
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Post by colormist on Aug 12, 2011 10:58:45 GMT -5
Vintage,
When I had my testing done, my geneticist said insurance would not cover the testing if it was just to discover if I had HFI (they prefer to do all over manner of dangerous tests first that are cheaper). He knew the dangers of testing for DFI before HFI, so he said we would say the test was to evaluate my hypoglycemia.
Keep this in mind when you visit your geneticist.
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Post by ukbill on Aug 12, 2011 11:53:05 GMT -5
Yes Yes I agree with Colormist, DFI test is dangerous for HFI it should only be done if all other tests for HFI prove negative. There are usually wordings that can get round Insurance Companies restrictions if your Specialist is willing to play ball. |
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Post by nlfitness on Jan 9, 2012 22:02:57 GMT -5
We had my sons blood tested at birth per request of our Pediatrition. We sent it of to Dr. Tolan along with my wife's blood, to see if she happen to be a carrier. It took a few weeks to get it back but she was solely breastfeeding at the time so the delay was ok.
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Post by julienc on Jan 19, 2012 21:13:17 GMT -5
If you have HFi and your daughter is showing signs of it also .. why bother? You will identify the condition far faster than any Doctor could anyway. This was the path we took with my daughter. The odds are so very remote, and at my geneticists recommendation we did not do the genetic test when she was born. I probably knew better than anyone what signs to look for once starting solid foods. It looks like this is an old post - I hope everything turned out okay for you! |
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