So, we are thinking the corn syrup wasn't potent enough. I have decided we will try this once again (Matt didn't agree with me). This time, I put cream corn on her band-aid. Not real sure if the bandage will even stick because it was pretty slimy, but we will see. We will check her bandage tomorrow morning and see if anything is happening. I have to be honest, I don't think our little home experiment is going to work - it's kind of a long shot - lol.
Besides her home style allergy test, things in the Berndt house are going pretty smoothly. Allie is still doing well with her night time feeds. She isn't sleeping the best but I know it's just taking her some time getting used to being hooked up to the pump again. She always seems to get tangled in the tubing and it pulls on her button. Of course, every time she makes a sound during the night, I run into her room because I'm nervous with all the tubing. Her daytime bolus feeds are going well also. She is accepting her feeds pretty well and for the most part she is keeping them down. Her oral intake has stayed about the same but it does fluctuate a little bit more than normal. The other day she ate a whole beef hot dog however that was the last time she really ate anything. Last night we had homemade gluten and corn free pizza. She only ate 3 small bites but it's better than nothing.
Tonight we went out to eat at Denny's. It was a corn & gluten disaster. We looked at the allergy information they provided us and basically Allie could get applesauce, fruit, bacon, hamburger patty or sausage. Since Allie really doesn't eat meat (her chewing skills are still lacking some) she picked the applesauce and grapes. Unfortunately, Chloe ordered golf fish crackers and Matt ordered onion rings. Well, of course Allie wanted both of those once she seen them. It's nearly impossible to tell a 2 1/2 year old she cannot eat something and then convince her not to have a meltdown in the restaurant. We tried telling her no gold fish crackers but the cries and tantrum started right away. Same thing happened with Matt's onion rings. Of course Allie didn't each more than a few bites of each but still - we didn't keep her away from corn and gluten like we planned. In reality, this corn and gluten free diet is proving to be harder than we though. It's even affecting Chloe because there are certain things that she cannot eat in front of Allie. I know we will get the hang of this diet change but in the meantime, it sucks!!!!
Time to go check Allie's corn bandage because I see her night gown is wet on the back. My guess is the corn is leaking through - oh the drama.
Hope everyone had a safe night last night and Happy New Year everyone. Praying everyone stays healthy and happy in 2011.
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| Nothing too exciting here - this is what Allie's back looked like tonight |
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| Too much cream corn on the band-aid - I think so. Oh poor Allie - the things we put her through! |
I would totally do the same thing.... do you think MILK on a bandaid would work?? :) Gluten is one of the worst things to be allergic to... and this milk thing s hard enough so for you to have the worst allergy and then a second on top of that, there is very little she can eat.... I wish we lived closer so we could have little get-togethers with our little toddlers and talk to someone who understands what we are going through.... :) Take Care!
ReplyDeleteHi Jodi,
ReplyDeleteNoah is on Neocate Infant, concentrated to .8, taking 1200ml a day. I am certain Noah would be vomiting with the bolus if not for the fundoplication. He does still retch often during the day so all is not comfortable for him but he is tolerating the volume okay. It means a q-2hour for feeds though so he is still spending a lot of time doing feeds.
Thanks for your encouragement, we were still doing night feeds at Q3 when he was 6 months (not continuous, but gravity via bag, so we had to be up with him during each night feed). So this is really a big change for us. We are still not getting out much but it is a change for the good.
I'm so sorry to hear your challenges with corn allergy - that is a challenging one since corn product is in sooo many foods. I also understand your own wonderings if the test was a false positive. I hope you are able to sort it out with your home testing system. I'm so glad Allie is not fighting her day time feeds as much and she is doing okay on her night tube - it isn't much rest for anyone.
I think of you and Allie and Chloe often, say a prayer daily and am thankful for the technology that connects us! Have you given more thought to blenderized diet? We are starting to do more research but I know our Ped. and dietitian will fight us on that. So its Pediasure first to see if he can tolerate milk and if not, I think my next step is blenderized.
have a good day,
Darlene
Brooke - you never know milk on the band-aid might work but my guess is it won't. I thought for sure the cream corn would work but it just dried up. I could probably refine our testing skills but we will leave it up to the professionals - lol.
ReplyDeleteDarlene - thanks so much for information on Noah's feeds. It sounds like he's doing pretty well!!! We are slowly and I mean SLOWLY adjusting to Allie's new diet being corn and gluten free. It's a bit more challenging that I aniticpated but we can do it!
I have started looking into a BD a little more but nothing real serious yet. I still want to do it but I'm nervous because there is so many nutrients she needs and I'm just not good with nutrition, etc. So, we'll see. Our speech therapist and our Dietician is also going to do a little research for us. If we try it, I will let you know how it goes.
Good luck with the Pediasure - I hope Noah tolerates it well. Allie used to be on Boost Kid Essentials (basically the same thing at Pediasure). She started on the 1 cal and then went to the 1.5 cal. She handled the 1 cal much better because it's not as rich. I'm not sure what your dietician is recommending Noah starts at but I would suggest the 1 cal first. Our issue with Allie was always volume so they were always trying to increase calories without increasing her volume, however the richness of the 1.5 cal was too much and she couldn't tolerate it with tube feedings. Hopefully Noah can tolerate milk - keep me updated!!
I have read a little of your story and I just wanted to urge you to take a look at the Avoiding Corn forum on Delphi (http://forums.delphiforums.com/AvoidingCorn/messages). Even if you are buying no foods with corn or corn derivatives (http://www.cornallergens.com/list/corn-allergen-list.php) listed on the label, your daughter would still be getting a good amount of corn in every bite. Cornstarch and citric acid (corn derivative made using Aspergillus mold) are the two most popular food additives used in America. When something is used as a processing or packaging aid, it is not considered an actual ingredient, therefore manufacturers are not required to list it on the ingredient label. This is the little-known fact that makes corn allergy so challenging.
ReplyDeleteA few seemingly innocent foods with hidden corn: baby carrots, prewashed salad greens, fresh grocery store beef and chicken (soaker pads are saturated with citric acid and both lactic and citric acid are used in processing), bandaids (adhesive is corn based), vitamin D milk (corn oil is used a vitamin carrier), cheese (cornstarch is used to prevent it sticking to the packaging), enriched rice and iodized salt (both have corny vitamin carriers), enriched wheat and fortified cereals (in fact, anything vitamin enriched is corny), distilled or white vinegar (made from corn - organic ACV is safe), fruit juices with ascorbic acid (corn derivative), all OTC children's medicine and all Rx meds unless compounded to be corn-free, etc, etc. The list goes on and on.
Here is a link to a good corn-free foods list that is fairly up-to-date. Since manufacturers change their ingredients so often it's impossible to guarantee all foods on the list are corn-free as of this moment, but it is a great starting point:
http://corn-freefoods.blogspot.com/2010/12/corn-free-list-updated-slightly.html
I would suggest that you try raw whole organic milk for her since it is one of the only ways to get milk that is truly corn-free. I just wanted you to know that there are many allergic kids that refuse to eat their allergen because even at that young age they associate the foods with pain. As you will see after reading the forum and the list of derivatives, there is very little food in America that is completely corn-free. It is statistically impossible that you were feeding her corn-free foods or eating corn-free yourself when breastfeeding "by accident". It can be done, but it takes diligence and practice (and avoidance of most major food manufacturing brands) and lots of information that isn't common knowledge. Perhaps, once you find some foods that are corn-free, she will start eating on her own. I certainly hope so. My corn and soy allergic family will be thinking of you.
KC - wow - I'm amazed that there is hidden corn in so many products. We already struggle to find foods that Allie can eat or "will" eat and now to find out there is even hidden corn in a lot of things. I will check out the links you provided above. I'm anxious to check them out - I know I have a lot to learn!!!
ReplyDeleteSince taking Allie off of corn products back in December, her oral intake has not increased at all. However, her behavior has been much better and she is having less and less tantrums. I don't know if her oral intake hasn't changed because she is tube fed and she is staying full all day with her tube feedings or if she truely is still refusing to eat. Of course we still don't know why she doesn't eat but the doctors thought if her refusal to eat was due to allergies, then once the allergens were removed, she would eat. However, since Allie has never eaten, there is very little chance she will just start eating one day - we figure she will need a lot of therapy to eat like a normal 3 year old. Anyway, I'm hoping all of her eating problems stem from the corn allergy and the gluten sensitivity and she will one day just want to eat - I guess time will tell.
Thanks again for all of the great information - I'm off to check it all out!!! If I have questions, you just might be hearing from me again :) So happy to have found other people with the same allergy as little Allie.