laurie
Junior Member
Posts: 67
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Post by laurie on Jan 17, 2006 16:20:39 GMT -5
we are back from charleston and the doctor just called. hunter's test is not showing a lot of abnormal bacteria build up........thankfully good news for a change. they start working on his esophagus Feb.3. he has an upper gi done then. and on Feb. 17th they are doing another scope.
i've been a little successful on my trips to the grocery store........i found hot dogs and i've found bread.
another good thing already...........hunter had his first normal bowel movement this weekend, haha. it feels so funny to get excited over something like that, but i swear i've called and told everyone. he wants to try going back to school tomorrow, so cross yalls fingers!!
thanks again for all the support yall having been giving me. one day i might get the hang of this.
laurie
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Post by kristen on Jan 17, 2006 19:38:13 GMT -5
WOOHOOO! I'm so glad Hunter is feeling better!!!!
And YEAH for normal BMs!!! We had a couple days, but are now back to pale poops! ARG!
Give him a big kiss from me & Coley - I'm glad he wants back to school!!!
Keep us posted! KJ
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Post by Melissa on Oct 25, 2006 13:23:32 GMT -5
Hi everyone. It's been awhile since I've posted, I've been very busy lately trying to re-organize my kitchen, buying new baking appliances and that all important label reading at the grocery stores. I first found this board when my 10 year old son was diagnosed. We just recently found out that his 7 year old diabetic sister also has HFI. She was diagnosed as diabetic last year and her sugar levels have been out of control for a year. After Bryce was diagnosed, I started noticing that she had alot of the same symptoms as he did, I just thought that it had to do with her diabetes. But then I started wondering. She recently went on the insulin pump, which malfunctioned on her second day and sent her sugar levels crashing to 27 which resulted in a seizure. Scary! After I got her back, we started shoving sugar down her, but her sugar levels would only come up to 39 and kept crashing. After a frantic call to her doctor, we discussed the fact that we thought she might have HFI and maybe she wasn't absorbing all the sugar I was giving her. So I got a diet coke and added 2 teaspoons of dextrose to it. That did the trick. She was diagnosed with HFI 3 days later. Her sugar levels have leveled out quite nicely and she is more spunky, and she seems to feel better. I wanted to run some of the changes we've made to their diets by the experts and see if I'm on the right track and what else I can do.
Chips - pringles, lays plain, pretzels, plain and with cheddar cheese, 100 calorie cheetos
Cookies - nothing but homemade
Breads - Colomb ? (green package) found at Winco and Wal-Mart and homemade
Hot dogs - Hebrew Nationals
Bacon - Apple Valley (Winco) and Vons Brand. Both have no sugar added and are not cured with sugar. Both kids tolerate it fine.
Candy - bottle caps and pixie sticks (Willie Wonka's), Sweet tarts and smarties
Cocoa for baking
Nestles unsweetened Nestle Quik for chocolate milk (my son loves it!)
Maple syrup - homemade with Mapeline (found at Winco)
Waffle and pancake's - homemade
Cakes - homemade, using cake flour. It makes it fluffier, not as dense. brands are Queen Guinevere and Softasilk.
I've noticed that when I bake using dextrose, it is not as sweet, so I multiply the amount of sugar needed by 4 and it tastes better. Especially when using cocoa.
Cystal light on the go single packets for flavored drinks.
Pocorn only once a week, Byrce can't tolerate very much of it.
Jello Sugar free instant pudding
On the glucose tablets - I wasn't aware that the BD brand contained anything other than glucose, but i will definitely check it out. Thanks!
I'm in the process of trying out several different recipes and made poppy seed muffins yesterday that turned out really good. I simply modified the ingredients needed to what they could have and added more dextrose. Time willing, I will post some of the recipes that turn out well on the website.
Please let me know if anyone sees any problems with the foods listed so far. I check all the ingredients carefully, but am still learning. Of course, there are no chips with bar b que flavoring. I also have nutrional guidelines for all the fast food resturants in town, so I know exactly where they can eat and what. I have a binder in process for all their foods and it gets bigger every day. Thanks again for taking the time to share all you've learned with other families in need
Melissa
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Post by Tammy on Oct 25, 2006 22:44:48 GMT -5
The main one that sticks out to me is the pringles chips. The fat free pringles are ok, but the regular pringles have sugar, at least in our area. And be sure to always check the pretzels, as they vary by brand.
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Post by kristen on Oct 26, 2006 8:54:03 GMT -5
Hi Melissa,
Our regular pringles are safe here, and most of the snyders pretzels (as well as the pepperage farm pretzel gold fish) are safe too. But Tammy brings up a good point. Don't always just trust the brand or the food item. You must ALWAYS read the ingredients as they vary from region to region, store to store, variety to variety and even from time to time.
This is just one reason why I've just given up on prepackaged foods...but that's me, I hate the grocery store much more than my kitchen. I'm still on the hunt for a bread stick or bready pretzel recipe that doesn't require a machine. I'm going to expirament with Fred's pie crust recipe and post anything that pans out!
But back to your question, for the most part your list looks good, but if you type out the ingredients we could tell you for sure. Some things are not so obvious so in the beginning it's best to question everything.
As for the quadrupling of the sugar, of course it's all preference, but in general we find that many of the kids actually like things a little less sweet. Technically dextrose is about half as sweet as sucrose so some people double it, but many of us just substitute 1 for 1 and find that the kids are happy with it like that, and that the recipe works just fine as well. Although some of us are finding that dextrose burns a bit quicker than sucrose. Are you having any trouble with that?
And I'm glad you've been able to get your daughters BS under control too...that's fabulous!
KJ
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