Update: turning 3 and doing well!

[heatherp]

Just thought I'd update as I know how difficult it was a year and a half or so ago when our little one was first diagnosed, and reading other people's updates was helpful. Our little guy will be turning three in a couple of weeks and he is healthy, happy, and right on par with where he should be, despite a rocky start due to undiagnosed hfi and its symptoms and effects on the body.  He has a decent variety of foods, realizes he eats differently from everyone else but seems OK with it so far, and having hfi hasnt stopped him, or us as a family, from having fun and going places. We just carry his food with us and/or we stop at a restaurant for buttered noodles when out. One thing that has helped us is we keep a mini-fridge and a kitchen cabinet stocked with only safe foods for him. He knows they are his and seems to take pride in the idea that he has his own foods to choose from, and he gets to pick what to eat without me having to say "no, that's not safe." It didn't cost much and has made a huge difference!  As an added bonus, when we leave him with a sitter we feel confident knowing his foods are all in one spot and making a feeding mistake would be very, very difficult.  We haven't dealt with school yet, but he will be going to preschool next year so I'm sure we will have some new challenges to work through, but I'm also confident we will manage just fine. So, to anyone who is struggling with a new diagnosis, I hope you can find hope in updates like this and from all of the great and helpful people on this board.  It is tough and takes adjusting to, but once you buy a great cooler and a nice lunch bag, find a variety of safe foods, and get used to planning, making and packing meals, the sky is the limit for your little one. Having hfi doesn't need to stop them from enjoying a full life. 

[charlie]

Great to hear you are doing well and as you say it should encourage others they can do it.

Great idea having a separate cupboard for his food, giving them some independence to choose their own foods is a big step forward.

[rysmom14]

Great News for you and your little guy!! You have been so helpful for us over the past year. we have used your suggestion and I have one of the crisper drawers in the fridge for just Ryans food and the snacks in the pantry are all marked so we know at a glance what is safe for him.

[rachael]

Thank you for this post! My son (22 months) just got diagnosed this week so it's really reassuring to hear about other littles doing well. Can you share what kinds of snacks you stock for him? A few of my son's favorites aren't safe so I'm looking for new ideas.

[rysmom14]

Hi Rachael, Welcome to the group! my son is a little over 2 years old and has been diagnosied for a year. Some of the snacks we like are :

cheese sticks
saltine crackers
ham or turkey
popcorn
plain yogurt
home made cookies ( just flour and butter and water)
cheese its
Cascadian pure O's ( great replacement for Cheerios!)


Just make sure you look at the ingredient list to make sure there is no sugar. some brands are safe and some are not. depending on where you life, i may be able to help you a little more.

This group is so helpful so ask any questions you have.

[colormist]

I just discovered Annie's Bunny cheese crackers are safe, too! They're tiny enough that they should be perfect for little fingers. They are a good substitute for goldfish cheese crackers.

[rachael]

I was relieved to see that the Annies Bunnies are safe, my little one loves them! Cheese-Its are not safe in this house... I am known to devour entire boxes in one sitting...

For Ham, is there a particular brand that you use? I thought that lunch meats were cured with sugar so I was planning to avoid them.

I spent hours trying to find Cascadian Os on the night after we met the nutritionist and ended up ordering them before I found them at Whole Foods (where I probably should have looked in the first place).

One item I'm confused about is Corn Chips. Are they not safe because they are corn based, or are they okay because of the cooking process? It seems like sugar and corn by-products are in nearly everything.

We're located outside of Denver CO.

[rysmom14]

Hi Rachael,

I will have to look into the Annies Bunnies. It would be a different option to cheese its and more fun for him! As for the ham I am thinking it was hilshire farms. It is in the section where the hot dogs and breakfast sausage. It's pre-packaged. I don't trust anything that comes from the deli. You just have to look at the ingredients. The ham is cured with dextrose. The turkey is Applewood Farm brand. I think you should be able to find that at whole foods as well. They sell it at our local store here in Pittsburgh, PA, but I have bought it at whole foods before. Again just read the back. some are safe and some are not. the O's are a huge must have at our house. My sn will use this as a breakfast option when eggs and oatmeal are getting boring.

as far as the corn thing..... I still havent been able to master the deal with corn. I have seen bits are parts described here, but I am just stesaring clear for now. I think corn meal is ok, but not corn... I am not 100% and I dont want to tell you the wrong thing.

[colormist]

I've been having some luck with the Applegate Smoked Turkey (www.applegate.com/products/natural-smoked-turkey-breast/) I haven't checked out their other sliced meats. I've found it at both Target and Giant Eagle.

As for corn, it is confusing. I think corn meal is okay, but not sweet corn or canned corn. So things with corn meal you can try tentatively to see if there's a reaction, but avoid anything with fresh corn (salsa, tinned corn, corn on the cob, etc). I really love Pirate's Booty Cheese Puffs (which are made with corn and rice flour).

I think corn chips are okay (fritos, tortillas) but, again, always do a trial run first to see if there's a reaction.

[rysmom14]

I must have had a brain fart, The brand we buy for turkey is the same one that ColorMist is talking about. apparently, I must have decided that applegate was a farm or something. Haha. And I buy it at Giant Eagle and Target too. The first time i bout it I was at whole foods, so I was happy to find it closer to home at the other stores because the whole foods is about 1.5 hours aways.

[rachael]

Thank you both, this is really helpful! It's so hard to wrap my head around everything at once, but we just found out so I'm trying to be gentle with myself for the slipups that are bound to happen as we are learning.

[Stefanie (Ziba)]

I love all these posts. SO helpful. Corn baffles me. He doesn't seem to do well with any of the corn chips (diarrrhea). Also, I did not reaize till we inadvertably stopped eating oats that it was also giving him mushy poops :-(

Our son has had the HFI test, Microarray and Exome. The only revelation is that he is a carrier for GSD 1B. Everyone insists that you cannot have symptoms being a carrier, but there is no doubt he cannot tolerate fructose. He has been fructose-free for 18 months and it has changed his life completely. No more vomiting/diarrhea, improved labs and his ultrasound is stable (bright liver with dark spots).

I would love to have a firm diagnosis, but for now, he gets fructose-free, takes carnitine supplementation (game changer) and Biogaia probiotics (huge help with gas and bloating) and drinks 32 ounces of Abbott Nutrition's Elecare Jr which gives him all vitamins and minerals.

I still get nervous when introducing foods. For example, I have no idea if HFI ppl can tolerate tartrate/tartaric acid or tapioca starch/flour. Always nervous because symptoms may be subtle with these ingredients. I can tell when he acts "crazy" that something did not make him feel good. Hubby thinks I over-analyze. But, my OCD has gotten us this far!! Haha.

[ukbill]

it might be the digestible fibre that is causing the problems. it converts in the intestine into sucrose and causes IBS type symptoms and lots of painful gas!

I keep well away form high fibre foods because of this and take a nonne digestible fibre supplement every day to keep my system working.

Psyllium husks are the best thing in the world for sorting out a bad HFI gut.. along with a very low fibre / fructose diet of course.