Hello New Member, 5 yr. old son with HFI

[Janine]

Hi Everyone,

My name is Janine and I have a 5 year old son with HFI. He was diagnosed at 7 months old in Toronto, Ontario, Canada at the Hospital for Sick Children. Nicholas, is doing extremely well and is by far surpassing the drs. excpectaions.

I am looking forward to passing on my experiences, ups and downs, etc. with other parents. I also look forward to hearing from other parents and there experiences.

Janine

[Kelly Grace]

Hi Tammy!

We found out that our daughter had HFI when she was barely 3 months old.

Our ped. recommended that we add caro syrup to her bottle to stimulate her bowels. SHe would also go through collickly episodes that had her shreiking in pain. We thought that it stemmed from irregularity.

She became lethargic and when we took her to the hospital, her blood levels revealed that she was going through liver failure.

After a series of tests, she is positive for one known HFI allelle and neg. for the rest. Right now Dr. Tolan is testing her other chromosome as well as her twin brother.

We would love to hear your story as well.

[Tammy]

Hi Grace,
My daughter was a floppy baby from birth. Of course at the time we didn't know it meant anything. When she didn't roll over by 5mo of age, my ped. suggested we have some others take a look at her. By 7 mos, she had cirrosis of the liver. That is when they started looking at the liver. We live close to Geisinger Medical Center in Danville, PA. When they couldn't find the problem they sent us to Philladelphia Children's Hosp. Again, no results.

After many, many tests no one had any answers for us. She didn't roll over until 11 mos. She didn't sit up on her own until 2 yrs of age. And she was always very small for her age.

Finally, a young new Dr moved here from Boston. He had seen a case of HFI in Boston. The person was from Toronto but had no where to go. Dr Maksimak did a liver biauspy and sent the sample to a lab in Texas. They finally gave us some answers. She was not quite 3 when we started her on her diet.

Now we are in the questional part. Way back then they told me that it was very likely that she would have died from liver failure within the next year if we hadn't found it. And the thought was that the liver was so bad that it wasn't cleaning the toxins out of the blood. The blood was then going to her brain and caused brain damage. She has cerebal palsy like systems.

I have never actually seen Dr Tolan. I heard of him through the sites on the internet. Since then, my Dr has been in touch with Dr Tolan and sent a blood sample up to him. He has sent back the info that he wasn't able to detect her HFI from it. The tests detect something like 80% of the cases. So apparently hers is slightly different from others. Dr Tolan also has said that he never ran into HFI causeing any brain damage. So I really don't have any actual answers again. He does agree that she has HFI from the findings from the lab in Texas.

But....She is now 22 and her liver has repaired itself nicely. We follow the diet very carefully. As for baking, I usually just use any recipe that I use for us. I just subsitute dextrose for the sugar. At first I used more because Dextrose doesn't make things tast as sweet but I have learned over the years that Regina doesn't like things as sweet. So now I just use the same amount that the recipe calls for. When I make her cupcakes I use sugar-free jello pudding for the frosting. This worked very well when she was in school. All the kids liked them and she could share with them.

With Easter now looming around the corner, do you have any chocolate candy your kids can have? There is a candy store just up the road from me that uses sugar-free chocolate (when requested) to make rabbits, eggs, etc. Their website is:
www.puritycandy.com/
This is just a small operation and I am sure if you gave them a call they would send you anything you wanted.

I'm sure no expert on this, but I'd be glad to help come up with ideas for any questions you may have.

[Kelly Grace]

Thanks for sending the link to the candy store!

I just called them and will have them send Easter candy this year.

I'm glad to hear that your daughter is doing so well.

Right now my babies are 14 months old. I steam a lot of veggies and make a special meatloaf and boil chicken. Could you send a description of what your daughter would eat for dinner? I found out that they can have macaroni and cheese.

Would love to get more ideas.

Thanks.

[Cati]

Guest-Kelly said:

Thanks for sending the link to the candy store!

I just called them and will have them send Easter candy this year.

Is there Candy without fructose, sorbit, inulin etc.?

Guest-Kelly said:

I steam a lot of veggies and make a special meatloaf and boil chicken.

They can eat steamed veggies? Is this better than cooked veggies? How much do they eat per day?

Cati

[janine]

Hi Everyone,

Nicholas loves to eat sweet tarts, pixie sticks and rockets which only contain dextrose and no other sugar. Nicholas has 2 older sisters so when they are having a treat Nicholas has one of the above candys.

I buy all of the above at the Bulk Food Store.

Janine

[Tammy]

That's great. I forgot to mention that you also need to double check them. Their sugar-free chocolate is fine, but just use common sense with the rest. Example: They make sugar-free peanut butter eggs. They contain peanuts, which my daughter can't have. They also make sugar-free chocolate pretzels, But the pretzels contain corn syrup.

They will also sell just a hunk of chocolate if you're interested in coating pretzels or anything yourself.

[Tammy]

Regina does very well with potatoes. So she eats a lot of them in all forms. Also, Mrs T's perogies. Our local supermarket (Weis Markets) sells some "potatoes in a box" under their store brand names. Sour cream and chive flavor.

There are different brands of hot dogs that are ok. But these seem to change quite often. So I always check the pack each time I buy them. Kuntzler and Ball Parks are a good place to start looking.

Smithfield makes a sugar-free bacon. And some of their hams are ok, also.

Bisquick and Jiffy Mix are good for a lot of things. Add milk and make biscuits, which we use as buns for cheeseburgs. We also make (thin) pancakes out of them and use the leftover ones as "bread" to make sandwiches. Some turkey and ham lunchmeats are ok, Just check the labels. They are pretty good with a little butter and mustard. We also put Cream of Dried Beef on them.

Banquet makes a "boiling bag" salibury steak that she can have. I put it over white rice.

Kineret makes a frozen pastry dough. We put a couple of pieces of cheese in it, fold it over and bake it. Or wrap it around a hot dog and bake it.

Keebler makes an ice cream cone. At least the last time I checked it was ok. You can fill it with frozen sugar-free pudding. (chocolate of course!) And pudding works well as frosting, also.

The next time you have a couple of free hours, take your reading glasses and go to the grocery store. You'd be surprised at what they can have when you start reading labels. Of course it's surprising what they can't have, too.

I hope this gives you a few ideas that are new. I'm sure I will think of many more things that I'll tell myself "you should have said......" as soon as I hit "post".

And for traveling, Do you know McDonalds Chicken McNuggets are ok? They are a lifesaver.

Instead of just boiling chicken, try dipping it in egg, then coating it with Bisquick. Either bake it or deep fry it. This works well with shrimp and fish, too. After you coat it, place it in the fridge for an hour or so and it will stay on better.

I know your babies may be a little young for some of this, but as they get bigger.... I hope this helps.

[Kelly Grace]

Hi Everyone!

Thanks for all of the great recipe ideas!!! I am just getting started and appreciate all the tips.

One question, I went to the McDonald's website to read the ingredients in Chicken McNuggets and saw a lot of corn oil, corn flour and corn starch products. I was under the impression from Dr. Tolan's website that corn was not allowed in a HFI diet.

Is there new information that I am not aware of?

I purchased special baking powder, and I listed the website under "safe ingredient sources", that is made from potato starch because over the counter baking powder is made from corn starch.

Please let me know what information you have concerning this.

Thanks.

[Tammy]

I have always been told by my nutritionist that corn itself is a no-no. BUT corn flour, corn starch, and corn oil is ok. Apparently it is only the "bran" of the corn that is not allowed. Even corn syrup would be ok if you can get it pure. Everyone in the US adds fructose to it, making it not allowed.

Of course you can check this out for yourself, but I'm sure you'll find it'll make things much easier once you do.

As I've stated earlier, a very small, minute amount will make Regina sick. I've learned that the hard way. The corn by-products are fine.

On the other side, Dr. Tolan's site says (or did the last time I checked, which has been awhile) that the new Splenda SHOULD be fine. But Regina can't eat it. She gets sick from it. Now I am hearing more and more on it that it's not completly sugar free after all.

Unfortunately, this diet is almost a "learn as you go" thing.