You'd think at a hospital ...

[meaniejean]

... they could get the fructose-free diet right. Ummm, sadly, no.

So, we let Calvin trial some potatoes and a safe hot dog on Thursday. He went to town on the homemade potato wedges. I know I should have stopped him after a couple, but I was just so happy to see him eating. He woke up in the middle of the night vomiting. He spent all of Friday sick and had major urinary ketones.

Fast forward to yesterday. He had managed to catch some respiratory bug while recovering from the fructose and he was now lethargic and feverish and coughing so we were told to bring him to the ER. They decide to admit him after doing some blood work because his white blood cell count is low and he is not immunized and they were worried he wouldn't be able to fight another infection. So, has an IV and gets IV abx.

So, today he is supposed to try to eat and drink. They finally send me up a fructose-restricted menu after the woman distributing the menus gets all mad at me for asking questions about the food (and the fact that the fructose restriction was not in her paperwork - I had told EVERYONE about the fructose issues - no sugar, no sorbitol, no fruit, no veggies.)

The menu listed spaghettios as an option - what?!
We ordered a plain hamburger as that was about all I could imagine might be safe. I also got a hamburger for myself from the cafe. We sat down and ate them together - well, luckily Calvin only had one or two bites before telling me it tasted "spicy". I ate the whole burger and within 10 minutes was very nauseated and shaky and spacey and cold. I asked a very nice CNA to check on the ingredients for me as I was sure there must be something amiss - sure enough, third ingredient was sucrose - in the beef patty - why?! And what does one of the nurses come in and say - "why would that be a problem, sucrose is a different kind of sugar than fructose, you know."

Then the doctor comes in and says she has talked to the ped GI doc who stated that she still feels all of this is just some malabsorption. What?!?!?!

So, we are home tonight. Calvin ate a little bit but just wanted to go to bed. He is acting very strange again - can't imagine the sucrose helped ...

I talked to my father's mom this evening and found out that my uncle does indeed have a genetic liver disease that was found by liver biopsy in his early twenties but she doesn't remember what it is, only that he said it wasn't going to kill him. So great to have liver issues coming from both my mom and my dad

My GI appointment is in early March. I really understand the need for a solid diagnosis after our hospital experiences. Grrrr!

Thanks for letting me vent! Congratulations to all those who have survived a hospital stay!

[ljs678]

I think you are right, unless it is their specific area of expertise, the medical profession have no idea what is ok and what is not. e.g. yesterday we were seeing the surgeon, who knows Hugo is suspected HFI. He asked me if he drinks orange juice and eats tomatoes! (He was trying to work out if there is a link between diet and Hugo's reflux). At least that is one thing I don't have to worry about as the acid content of his diet must be about 0.

But last time we had a hospital stay (last time I tried him with fruit, on instruction from our pediatrician) they were really good about it. Only thing that annoyed me was they didn't want me to breastfeed him for the first day. But I pretended not to hear this and they didn't make too much fuss.

This was before anyone had mentioned HFI, but I explained that he would only eat 1 brand of baby cereal, 1 type of yoghurt (that was it at the time) and they just let me go out and buy what I needed for him.

[meaniejean]

Oh man - you must have just cringed when he asked you about the OJ and tomatoes! Our pediatrician told us to give our littlest guy some bananas or applesauce when he had diarrhea - had to remind them they both contain fructose!

I almost started crying when the woman with the menus gave me such a hard time. I just wanted to go home - there wasn't much reason for them to keep us there and I didn't feel like Calvin was safe. So frustrating!

Calvin is feeling much better all of a sudden this morning. He's still coughing up a lung - they said bronchiolitis or something like that - but he's playing and walking on his own now.

I think Tammy mentioned that Regina sleeps a lot after a fructose ingestion. Anyone else get this? I know he wasn't hypoglycemic anymore because blood glucose was fine (and he had had a bunch of glucose tablets that day).

[charlie]

Oh, the joys of this disorder, its amazing what people think are safe, bananas are one I often get asked if they are OK. Obsessive as it sounds I now keep a copy of the diet advice in my handbag so I can produce it is we are anywhere that we may need it, or to show friends if we are eating with them. Maybe you could show them that if you need to go into hospital again, its a bit more official than just saying it. I can email the english version if anyone wants it, just pm me with your address, now I have managed to convert it into a readable version.

So far we haven't had to worry about hospital, we have managed to stave off stays so far but I think she is due to be admitted soon for glucose investigation so I will go prepared!!!

Someone warned me about mass produced potato wedges and chips that have been frozen as they are dipped in sugar solution to help them crisp. I only ever do fish and chip shop chips or homemade now. The chances are hospital ones are economy variety so bound to have additions that they don't mention in ingredients, even though they are supposed to.

[charlie]

Starting to spot a pattern with Megs too with tiredness due to keeping an obsessive, meticulous diary since Christmas. If she ingests alot of fructose (and glucose for some reason) she vomits violently for 5 hours and then is ill and off food for 2 to 3 weeks with horrid poos, wee accidents the full works.
However if she only has a little as in the other day when she sneaked a nibble of a sweet she is hyper and manic for the next few hours then OK for 2 days. On day 3 she starts to go downhill, disturbed sleep and cries and screams and throws tantrums, Over that day she goes pale and has less and less energy. This then lasts several days and gradually gets better. So I have to do basic diet for a week to detox and hope for the best.

[toothfairy]

NO The hospitals, even a children's specialist hospital couldn't accommodate my sons diet. At least they were smart enough to realize they weren't informed enough to attempt his dietary restrictions. What they did. was allow me full access to a nurse's kitchen and provided me someone to watch him while I prepared food. I had use of all normal kitchen large appliances and storage. I packed and brought a cooler full of food, prepared every meal. Trouble, hard, but definitely worth every minute of effort. We knew any health issue we were dealing with wasn't from his food. After doing this I wouldn't want to do it any other way. It kept my son HFI safe for the 5 days we were there.

[meaniejean]

What a great idea. I would be more than willing to handle all the food stuff for him. We are still recovering here. The loose BMs continued today along with MAJOR irritability and combativeness - from one or two bites - man!

Meanwhile, I am pulling my hair out waiting to hear back from my uncle about what kind of genetic liver disorder he has. I'd really like to know before I have a biopsy! All this time and someone may have had the answer all along!

[Tammy]

Our hospital was great at letting me say what food Regina could have, but don't stop with the food. She was in for quite a while, and they gave her bad toothpaste, lip balm, even some of the meds were bad. They tried, but they just didn't get it all.

Example: The technicians went out of there way to find a contrast that was HFI safe for the scan they wanted to do. We agreed on one that was a powder and was safe, but when they brought it to her, it was orange. When we asked what they mixed it with to make it orange, they got all excited and apologetic because without thinking, they mixed it with kool aid like they always do............

[tez]

I have to agree with meaniejean, im in my 30's have had HFI my entire life and yes the same thing happened to me just last year in a hospital.
It is great that most other intolerances are "accepted" by society today, and even have shopping aisles dedicated to them, lets just hope that one day HFI becomes well known and we wont have to explain ourselves or test foods before eating them.