Newly Diagnosed 6 Month Old

[meganfrederick]

I just found out about two weeks ago that my son Trent has HFI. He will be 6 months old on July 15th. We thought it could be a possibility because he had acute liver failure and we spent 3 weeks at Pittsburgh Children's Hospital in March. After I stopped nursing him, I switched him to formula that had sugar in it, and he also had prune juice for constipation. He projectile vomited the prune juice. We found out this diagnosis from genetic testing and haven't introduced any foods yet. I am feeling a little overwhelmed and don't really know where to start, so I'm looking for some suggestions of foods that I should start with when introducing solids. I have read several threads with food ideas, but would like a little guidance before I start. Our dietician was helpful, but she hasn't had many cases of this before. I know we will have to just try things and see how he reacts, but I would definitely like to start with things that I know are absolutely safe for him. Thanks in advance for your help!

[colormist]

We have a few parents here with kids with HFI, so there's definitely some support. I think there are at least two other people near Pittsburgh who have HFI, so if you wanted to have us meet up and go grocery shopping with you one weekend, I don't think that would be a too crazy of a request.

I live down south of Pittsburgh, close to the WV border. Tammy lives east of Pittsburgh (I'm not sure how far away you are Tammy, but I know you're close!). Hopefully she can chime in.

Tammy's daughter (who is full-grown now) has HFI, so she's well aware of the dietary challenges of being a parent of a child with HFI.

General advice: No fruit. No vegetables (for now). Refined grains ONLY (no whole wheat or brown rice). No sugar, no molasses, no high fructose corn syrup, no honey. No natural flavors. No foods with added broth or brine.

Good stuff: Dairy: Milk, cheese, sour cream, yogurt. Meat: (this is where you have to keep an eye peeled for brines, broths, and meats cured with sugars) all of it! Pork is most likely to have unsafe ingredients. Grain: white bread, rice, puffed rice, cream of rice, cream of wheat, big white baking potatoes (stay away from other potatoes).

I think it's safest to wait until the child is old enough to give you some feedback about how they're feeling before you add in vegetables. All veggies have a little bit of fructose in them (from what I've seen). Some of those levels are tolerable as the HFIer gets older, but I worry that a younger child will have more issues with smaller amounts.

That being said, the veggies that us adult HFIers eat are typically spinach (and other very dark green leafy veggies), tinned green beans, mushrooms.

I made a HFI food pyramid a little while back and you might find it helpful: fructose-free.tumblr.com/image/117779509515

You still have to read the ingredients on everything, but it should give you a good start on what to look for.

EDIT: I thought I wrote this, but apparently not. From what I've read, it seems a lot of parents of HFI children tend to make their own food for their child. That's not to say you can't find food (I would think cream of rice and plain yogurt would be easy meals), but some foods are more difficult to find in unsweetened form.

[Tammy]

Hi, Sorry it took me so long to drop in here. Summer is crazy busy but I'm back now.

I'm a few hours away from Pittsburgh but my daughter and I travel well. It would not be out of the question for me to meet up sometime.

My daughter was over 2 before she was diagnosed so she was already on solid foods (although wrong ones) Claudia is probably the best to ask as she started young. I can sometimes find "cream of" soups that are safe and just add boiled white rice or some kind of pasta and/or chicken to it. I would keep the tastes very simple and plain to start.

Many people on here will cook everything for their kids, but I have neither the time, talent, or desire to do so. I am a "find it, buy it" kind of cook. I often find things in the generic brands that are safe when name brands aren't. There is exceptions to this so every label must be read. Chicken nuggets, hot dogs, crackers, a lot of things other little kids eat can be found in some form. That is where I would start looking.

I am excited to find Penn State Sugar Free Chocolate Ice Cream in our area. Very expensive but if it travels to your area it might be something to try later. I would wait a while though as it does have sugar alcohols in it which can cause diarreah. This is unrelated to HFI as it can affect anyone. So you should probably get used to his "signs" and responses before you try it. Regina does fine on it as long as she only eats a little, but she eats a small ice cream cone every night now.

Regina does well with everything colormist recommends, except she is eating cucumbers by the handfuls with no problems. But I also agree with her that you should keep all veges away for awhile, with the exception of maybe potatoes.

And the big thing for you to do is - - - - just breathe and relax. It's not as bad as it seems at first.

[meganfrederick]

Tammy, are you near State College? We live about an hour south of Penn State and I'm thinking you must live near there to be able to get Penn State ice cream. I know that I would love to meet up with anyone who would be willing to go shopping with me. That is so nice of you guys to offer that!

So far I have introduced plain yogurt and chicken. Trent loves the yogurt. It is so encouraging for me to hear that there are products available to purchase that he can eat like other kids. I just need some more education on how to read labels and understanding exactly what is okay and what isn't. I'm having trouble getting in contact with our dietician so I'm glad that I have this forum because I know you all will be so helpful! Thanks for your responses!

Megan

[Tammy]

I am near Lewisburg. If you look at a road map I-80 runs east and west, Rt 15 runs north and south. I am at that crossroads. To get to State College I'd probably come out Rt45. I'm thinking I'm about an hour from there. So that wouldn't be too bad on some Sat maybe. I'd probably bring a cooler and stock up on ice cream lol. There is only 1 place I can get it and it's terribly expensive but I really have no choice.

Lauren, how far does that make it for you?

you can email me direct at [e-mail]

[colormist]

State College is about 3 hours away from me. I'm down in the south-east corner of PA just off of I-79. It would probably be too far of a drive for a day trip for me.

[yetta]

I'm right outside Pittsburgh and have HFI. I'm terrible at following strict fructose free diet and have quite a few episodes because of lapses at least one every 2-3 months.

Your son's diagnosis sounds similar to mine back in 1970's but then my mother seemed to 'forget' and dubbed it 'allergic to baby food' and often would give me things that made me have episodes and next time she made or bought it she'd say 'remember you got sick so you probably shouldn't eat that' as if she had no clue why...I really think the whole thing confused her back then and she thought I was just allergic to baby food. Long story short after a horrid episode following trying to eat healthy and testing(not genetic) and still some condescending doctor experiences a new resident MD I got assigned to listened to me, left room for ages, came back and said 'it does say here in your medical records from child hood that you have intolerance to fructose'. When I told mom she was like 'oh, really?'...she really is a good mom! just think it was 'the times and her lack of understanding'.

As a baby/toddler I avoided due to symptoms. Mom talked about how I ate nothing but mashed potatoes, cheese, and cottage cheese and drank nothing but milk or water then (black coffee as teen) pretty much every meal of my entire life as a kid. Anyway, I apparently loved mashed potatoes when I was first transitioned to solid food. Mom tells the story all the time about how I never stopped crying or puking until finally tried mashed potatoes and then she fed me that every single meal for months. She always ends story with 'I can't believe you still eat mashed potatoes because I'd think you would have gotten sick of them by now'.

I think I must have had a bad experience with yogurt so I can't speak to that. I don't remember eating it but just the thought of yogurt gives me aversion reaction same as thinking about eating a spoonful of honey which I once did at Sunday school as kid and of course got really really sick and ended up in hospital (if they mentioned fructose intolerance I don't remember it (I was 7 and can remember mom being super worried about honey from then on). Another thing that stood out from my pre-teen/teen years is that I was constantly being checked and reprimanded for not getting enough Iron and being anemic (I'm nearly 43 btw) and be given Iron supplements but getting sick on them so lying about taking them (although MD insists the ones I don't take now are fine I still get sick on them and don't take them even if with meals and so on and so on with reprimands even now as adult). I have yet to find any vitamin/supplement I can tolerate although I often think this is a more mental thing like with the honey: I seriously start to feel panicky after swallowing a vitamin which perhaps is why I always get sick. Never have panic attacks for other things and certainly never to extent that puke but my MD insists they have absolutely no fructose and I'm full symptom (but MINUS hypoglycemia which is why sometimes she talks me back into trying one: once a year I might actually take one around 'that' time of month when feeling completely drained but never good experience).


Anyway no experience with HFI and kids, other than knowing what I avoid based on reaction and not on my parents limiting it. For me now, I'd rather just never eat bread then try to make my own, for example, but I think I'd want to give my child more variety than I have. I have 2 boys, through adoption as single parent so no spouse, and I make them completely different meals then I eat: neither of them have HFI. I buy fruit and veggies I don't eat and end up throwing a lot out because find I forget to 'encourage' them to eat it. Drinks are where my boys constantly have to plead for me to buy them things.

Typically I now eat very boring things like I said with lapses when eating out: breakfast every day for years now (I kid you not)= plain cream of wheat from those single serve packets and lots of black coffee; lunch for last 17 days anyway = 3-4 microwaved/baked potatoes with butter and half a tub of mushrooms (been on mushroom kick maybe because they are on sale locally, but usually this is cheese cubes and sometimes it's spinach). Dinner = typically includes some form of meat, at twice the recommended serving size (lately steak with way too much cheese dumped on it and more potatoes ).

[rysmom14]

I am only about 30 minutes east of pittsburgh and would be happy to meet up if you are in town for an appointment!

[Tammy]

With so many of us in this general area, I think it's time for a get-together. We periodically talk about having one but haven't yet done so.

If someone knows the area and would be willing to find a place to meet up, Regina and I would be more than happy to make the trip to the southwest corner of the state of PA!