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We got a referral for the Neuro Psych exam through the pediatrician and insurance due to her fructose intolerance. Thank you for the recommendation to seek it. Hopefully they are listening to the part I requested of experience with highly gifted girls.

AtSouthDam, does your DD have HFI or is it fructose malabsorbtion?

Her file has it listed as Dietary Fructose intolerance, I assume fructose malabsorption.

Which comes to a question that I have struggled with all day; the referral list HFI as the reason for the referral. I am constantly correcting medical staff as to which one she has, which I think is ridiculous as they should have the report from the gastroenterologist.

I want to correct it but at the same I feel like I'm finally getting somewhere to getting her some help. I'm getting so tired of hearing that she tests low average so she must be fine. I've been looking for help since she was two years old and stopped looking at me.

Is correcting this likely to cause them to retract the referral?

Is correcting this (again) going to cause me problems?

ETA: I've had an email open to her pediatrician for 30 minutes now and am in tears. I'm so afraid that is will retract the referral and yet another door will be closed to us. I've been trying to get her help for nearly 5 years now and every time we're turned away because she'll test "average". She struggles with so much and knows she does, it's hard for me to watch. I just want help, always have, but no one seems to be around to give it.

AtSouthDam - I am in Australia, I have no idea how your health system works so I can't help you there. I am so sorry. But Dietry Fructose Intolerance is Malabsorbtion yes. Really there should be no confusion, HFI is far rarer and more serious, if she had HFI you would surely have known that with absolute certainty yourself.

But my understanding is that even malabsorbtion can be severe and cause huge problems. For us dietry intervention has had a profound impact on our DDs functioning. I wish I could help you. I understand trying and trying to get help for an odd child and not being able to find it.

It's not updated very often any more, but one of my favorite parenting bloggers has multiple kids with fructose malabsorbtion. She doesn't have the problems that you have the with the school system, but you still might enjoy reading some of her archives. (I particularly remember the one where the other parents were giving her the hairy eyeball when she was telling her daughter that she could not have any strawberries until she ate this roll of Smarties.)

Elizabeth I am the mother in the supermarket saying to my kid "NO! Don't touch the fruit! It will make you sick, her have some crisps." And yes I get the looks. My dd has just discovered the sweets and chocolates at the cash register and is asking for them and now I get the "why lie to your kid?" Look when I tell her they will all make her sick but I have something for her at home.

I think I may need a new pediatrician. This one just emailed me back asking if I had not heard the term hereditary in reference to Ciara's fructose intolerance. I had not. I distinctly remember, though, being told not to let food become a battle because it only makes her feel bad if she eats, not slowly kill her. That would imply she doesn't have the hereditary form, right? I don't think she knows the difference. On the plus side we haven't lost our referral yet.

Thanks for the blog link, I'll have to check it out. I used to keep smarties in my bag for that exact same reason but as DD gets older she needs them less and less. She simply has no taste for things that make her feel bad. It does upset me that McD's feels the need to put apples in the happy meals now. I get really funny looks when I ask them to switch them out because they make my child sick. Just add more french fries.

AtSouthDam you really really need to know which your child has. If she has HFI and you have been given inadequate advice (which I would guess is unlikely but possible) then diet may be a very real player in her issues.

Can you go back to whoever diagnosed the fructose intolerance?

Not quite the same thing, but perhaps it will make you chuckle-- I certainly go that particular hairy eyeball in my very granola town when I read the label on the back of some particularly heinous kid-junk-food item when DD was around three... and handed it to her in the shopping cart, smiling, saying "Nope, it looks great! Just sugar, artificial colors and all-artificial flavors!"



Hope that you can get some good answers from your medical providers. It's very hard not knowing what to do.

I can't due to insurance change but the pediatrician said she had the GI's file. I really don't think it's HFI, nothing matches up and the test done are wrong for it. She had diarrhea and stomach cramps after eating fruit; no jaundice or vomiting. The test done was a hydrogen breath test after consuming fructose and it was positive very, very quickly (12 to 95 units within 60 minutes).

A chronic care nurse will be calling me and hopefully we can get this cleared up. This is NOT what I expected from asking for a Nuero-psych referral!