WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Thursday, January 19, 2012

Food Battles-

The one issue that has driven me batty with Abby is the constant issue with foods.

I have resigned myself to really not understanding what causes her tendency develop a reaction to any food she eats too frequently, we just try to roll with it.

From talking to the other Mom's in the Mito world, food is a central issue. Either the kids aren't eating, or aren't eating what they should, have terrible digestive issues, constipation, allergies, no interest- it seems one way or another food is an issue we all deal with.

Right now I live in fear that a "tube" is in Abby's near future- for whatever reason, my "gut" tells me that if she were to get a tube that intervention would lead to another one. So I have declared war on food!

Abby's food problems began while she was nursing. When she finally had allergy testing done, she was allergic to corn,soy,tomato,shellfish,peanuts,eggs,dairy and much more! They said I had to quit eating all of those foods if I would keep nursing her! YIKES! Anyone who has had to read a label knows corn,soy,or dairy is or was in about every food item especially 15 years ago- When Abby decided to quit nursing- I was so relieved. She never really was happy nursing- as either I had allergens in my milk or she was too tired to nurse as long as she craved. It was awful getting her to eat a variety of foods as a toddler. Some of the issue was sensory defensiveness, some allergy, some fatigue..and who knows what else!


Over the years Abby had allergy testing almost yearly. Every time something new would pop up! Some foods would be fine for a year or two and then show up as an allergen again- keep in mind at this point in Abby's childhood we "knew" she had an undefined congenital myopathy but everyone said that could not possibly be causing any of her other issues- so had to be her extreme and odd food issues. At one point her allergist admitted he had never seen a patient like her before and was worried about even trying to test her again as she would react so violently to testing.

This past year we have watched her diet narrow to a dangerous point. Yet, the bright part at this point is at 16 she is very aware of what foods she eats and which ones she needs to avoid- so much easier then those early years where she was just not old enough to articulate to me what was hurting her.

Looking back, she has always struggled with high fiber foods. She has always struggled with most proteins and fats. Simple carbs as a rule have always been okay- when she was little I swore half the issue was just that she was picky! Now looking back I suspect she was having GI issue beyond the allergies.

So, right now she is able to eat tomato- and it is a life saver when it comes to cooking for her! Last year at this time tomato was KILLING her! Abby handles small amounts of chicken, but no other meats,dairy or beans- she is sorely low on protein intake. She is down to really only being able to eat carrots for veggies. Even our beloved artichokes and asparagus(both girls share my addiction to both) are off the menu right now. Fruits she can handle only if they are well cooked, and she is limited as many upset her stomach even then.

So gluten free(gluten is hard for her to digest),bean and pea free,dairy free, low fat, low fiber(gluten alternatives often have more fiber), soy free(soy always upsets her gut, she can handle minute amounts though),mostly veggie free,mostly fruit free... but she can handle strawberries. Last year at one point she could not eat potato or rice! I was in panic mode!

Knock on wood we have found enough foods that are sticking for her to maintain her weight, though her nutrition level is diving.

We are hoping the New GI guy we see on the 1st will help Abby find some sort of supplemental drink- I have been reading and asking a lot questions about elemental formula's- which I think might solve a lot of issues and getting better nutrition in her might help her serious fatigue- but I also worry that if we make it too easy on her digestion her ability to digest anything will drop further- but 1 step at a time-

As a Mom I have always felt like food was my primary duty- from the time your baby starts nursing- the number 1 portion of our job is food. I just feel so often that I have failed with Abby on this part of the job.. I know it isn't my fault, it is her bodies issues, but since I am Abby's number 1 advocate, I know Abby best, should I also know how to feed her?

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