Post by delaney21 on Jul 31, 2010 15:02:00 GMT -5
We have been considering HFI for almost 2 years now and finally went to a pediatric geneticist (at The University of Michigan) this past week for an evaluation. He reviewed my son's medical records and we were told HFI was not possible because my son has never had liver failure. I questioned this because in my research I have found that liver failure wouldn't happen immediately by taking 1-3 bites of a food, would it? Wouldn't it take several days, weeks or months? Instead he came up with an alternate diagnosis that really doesn't make sense - we're waiting on the blood results for that one. He did say I may come back to him in 3 years and tell him we received the HFI diagnose from another doctor, but he doesn't think it's likely. Why not just test for it now to take it off the table? It's a simple blood test, right?
My son had the breath test 2 years ago (when he was 2) and it was off the charts high - the highest they had ever seen. Within hours of the test, he spiked a fever, was sweating excessively and was really sick for about a week. I was told it wasn't from the test. In addition to this issue (and to complicate things), my son was diagnosed with an eosinophilic disorder at 11 months old, so he was taken off all foods and put on Neocate via a g-tube. He has been doing food trials for the past two years and so far we have only found 5 foods that he can eat and he doesn't take more than a few bites of any of those foods per day - ALL of those foods are either no or very low fructose foods.
A couple of past experiences:
Last month he had about an ounce of coke around 2pm. At 9pm he started screaming in pain, spiked a fever and was vomiting. In the morning we went to his pediatrician and we were told if he wasn't better by 5pm to take him to the ER. The pain, fever and vomiting continued so we went to the ER. I mentioned the possibility of HFI, so they tested his blood sugar and it was down to 40. They set up an IV to regulate his blood sugar and he perked up, but then started complaining of chest pain. I asked for a chest x-ray, which showed pneumonia. He ended up being in the hospital for a week.
When he was on Neocate-only we were told he could also have table sugar. We gave him a sugar packet and a few hours later the screaming in pain, fever and vomiting started. He was sick for another week.
When we do food trials, if we do anything with fructose, it's an immediate failure (day1) with the same - screaming in pain, vomiting, etc. and there is usually a respiratory infection that follows. He also usually ends up in the ER needing IV fluids. The foods he reacts to from an eosinophilic aspect are delayed - usually on day 4. So this is a completely different reaction.
The only thing that doesn't seem to fit is the respiratory infections following fructose ingestion. One of his doctors said it could be an immune response due to the fructose hitting his body so hard. Something is wrong, I'm just trying to figure out what it is. Has anyone NOT had liver failure and received a diagnosis?
My son had the breath test 2 years ago (when he was 2) and it was off the charts high - the highest they had ever seen. Within hours of the test, he spiked a fever, was sweating excessively and was really sick for about a week. I was told it wasn't from the test. In addition to this issue (and to complicate things), my son was diagnosed with an eosinophilic disorder at 11 months old, so he was taken off all foods and put on Neocate via a g-tube. He has been doing food trials for the past two years and so far we have only found 5 foods that he can eat and he doesn't take more than a few bites of any of those foods per day - ALL of those foods are either no or very low fructose foods.
A couple of past experiences:
Last month he had about an ounce of coke around 2pm. At 9pm he started screaming in pain, spiked a fever and was vomiting. In the morning we went to his pediatrician and we were told if he wasn't better by 5pm to take him to the ER. The pain, fever and vomiting continued so we went to the ER. I mentioned the possibility of HFI, so they tested his blood sugar and it was down to 40. They set up an IV to regulate his blood sugar and he perked up, but then started complaining of chest pain. I asked for a chest x-ray, which showed pneumonia. He ended up being in the hospital for a week.
When he was on Neocate-only we were told he could also have table sugar. We gave him a sugar packet and a few hours later the screaming in pain, fever and vomiting started. He was sick for another week.
When we do food trials, if we do anything with fructose, it's an immediate failure (day1) with the same - screaming in pain, vomiting, etc. and there is usually a respiratory infection that follows. He also usually ends up in the ER needing IV fluids. The foods he reacts to from an eosinophilic aspect are delayed - usually on day 4. So this is a completely different reaction.
The only thing that doesn't seem to fit is the respiratory infections following fructose ingestion. One of his doctors said it could be an immune response due to the fructose hitting his body so hard. Something is wrong, I'm just trying to figure out what it is. Has anyone NOT had liver failure and received a diagnosis?
