Update on my appointment

[julienc]

Well, it went about as I had expected. The doctor was a GI, and he seemed to have some idea of HFI. He was a bit skeptical that I actually have HFI rather than Fructose Malabsorption. He said that if I did have it, then I would have been a very sick baby and in the hospital quite often as an infant/toddler. I guess he has a point to some degree - both my brother and I as babies didn't like the fruit, but it wasn't as if we were vomiting constantly when we consumed small portions of it. My mom just didn't push it on us since we ate the veggies and other things. For as long as I remember we just didn't eat the sweet things.

He said the fact that my brother is the same way makes him think that it could be HFI - the hereditary part and all. He referred me to a genetisist but went ahead and did blood work to check my liver and a couple of other things. He was very much in agreement that pursuing a diagnosis is the way to go.

I didn't exactly learn anything new at the appointment, but it was a good first step. He printed out the sugar table from Dr. Tolan's site for me, so that was good. I have seen it, of course, but I was glad he at least had that information. The killer is that the first available appointment with the genetisist is the day after Thanksgiving. The doc may call to "rush" me in, but I doubt they can move it up. I've already waited 30 years, what's another 6 months? It is annoying, though.

For any of you who were diagnosed later in life, as an adult, were you mysteriously sick as babies? Or is your history like mine, where your parents didn't push sweet stuff on you and you stayed away from it as long as you can remember?

[colormist]

After reflecting on it, I remember having an inordinate amount of tummy aches as a kid. My mom didn't remember me having them, but then again she had two other kids to deal with and my younger brother was a heathen.

As a baby, when I refused the sweets, she just didn't force them on me (like some babysitters did--I hate poptarts and spaghettios even MORE than I should). I got my way with the foods I wanted. My mom generally didn't put much sugar into her food to begin with (corn, shake 'n bake chicken, baked beans--I didn't eat the baked beans). I might have just become accustomed to the constant illness and learned to deal with it.

Of course, I gradually gravitated towards unsweetened breads (french!), unsweetened peanut butter, unsweetened soups... I thought my favorite foods were my favorites because I liked the taste--but rather, it was because I didn't get sick. lol

And I still have an unhealthy addiction to Sour Cream & Onion Lays potato chips. I can't figure that one out.

My geneticist seems to insist that I would have jaundice as a baby if I DID have HFI. Heck, I look at my skin now and it's yellow. Maybe they just thought it was my normal skin tone?

Good luck on the appointment! I hope they can get you in sooner, and, well, it's not like your life depends on the diagnosis. You're already doing everything right.

[julienc]

Good news - they were able to find an earlier appointment for me. I'm signed up for mid-July. A whole 4 months earlier than my other appointment.

I hope I can get some resolution on this.

[Gretchen]

My son is only 7 and only got his diagnosis last year. So far we're on the malabsoption therory because he does tolerate small amounts of fructose. Anyway, as a baby and toddler, he screamed constintly. He never refused any food so of coarse I kept right on feeding him things and he kept right on screaming in pain. He has reflux even now and was hospitalized a few times for the uncontrollable sceaming. Until we met our most recent GI doc, all we got out of all the stays was meeting with developmental peds because of his "behavior". It kills me to think that this might have been why he was screaming all along.

Gretchen