Thursday, February 24, 2011

Simply Struggling

Let's start with the fact that Allie is doing great.  She is handling every one of her feeds and sleeping through the night.  In addition to this, she is gaining weight - yes, gaining weight.  She hasn't vomited in weeks maybe even a month - overall she is just doing amazing!!!

Me - well I'm slowly sinking and drowning in the corn word.  I'm confused, concerned, uneducated, scared and possibly in denial.  Let's face it, if Allie truely does have a corn allergy we have a tough road ahead - yes, it's not life threatening but it's not going to be fun.  Our ENT told us diagnosing a child with a corn allergy is one of the worst allergy's he could diagnose for anyone. Corn is in everything and and when I say everything, I mean it.  Even some organic fruits and vegtables contain corn - simply becaue they are sprayed with citric acid.  Not all organic but trying to find the safe foods are proving to be challenging.

The part I'm really struggling with is trying to figure out if Allie is really allergic to corn and if so, how sensitive is she?  You may be wondering why I'm even second guessing this fact - in all reality her allergy patch testing showed a severe reaction to corn.  Okay - maybe I'm still in denial I'm not sure, but the fact is that I'm still not 100% convinced she's allergic to corn.  I contacted her ENT doctor this week and he refuses to re-test her - he said her reaction was so severe the first time it's not humane to put her through it again.  So - retesting is out of the question.  I talked to him again today and he said that if I wanted, we could put her back on corn and see how she does.....hmmm....that's a tough decision because do I really want to put her on corn if she's allergic to it and it makes her feel icky?

Within the past 2 months, we have made some huge changes with Allie in her diet, enteral food and feeding schedules.  We have seen great improvements in her also specificallly in the following areas:
1) Vomiting - she's been vomit free for weeks and maybe even a month or so.
2) Volume of feeds - Allie can now handle 5 oz of food with a 1 oz water flush - easy - not even gagging.
3) Behavior - in general, her behavior has improved dramatically.
4) Energy level has increased in the past month.

Here are some things we have changed in the past 2 months that may contribute to the changes I just listed:

1) She no longer wears her pump and backpack during the day for continuous feeds. This was very traumatic for her since she hated her backpack and felt like she couldn't move while wearing it.
2) The end of December, Allie was put back on her night time pump for continous feeds because of her vomiting.  We were unable to get 1000 calories into her during a 12 hour period so her night time feeds were needed.  Keep in mind, this is around the same time she went corn free. (or mostly corn free)
3) She is now on a 100% blenderized diet.  I make her food everyday and feed it to her through her feeding tube.  It's a known fact that real food is heavier in the stomach than the commerical enteral formula and therefore it stays in the stomach easier - reducing or eliminating vomiting. 
4) Allie is consuming much less corn than she did before.  I thought she was basically corn free but she's not - I am finding a lot of hidden corn in foods that I thought were safe. - She is going corn free due to her corn allergy which was diagnosed in December.
5) Allie is now gluten free - due to a gluten sensitivity which she was diagnosed with in December.
6) As of February, Allie is no longer on her night time pump for continous feeds because her volume tolerance has increased and we are able to get her calories requirements into her during the day (with bolus feedings) and then do one bolus feed at night.

These are some huge changes we made all at the same time.  So why has Allie's vomiting stopped and her behavior has gotten better????  That's the part I'm struggling with - I honestly don't know specifically why things have gotten so much better for her but I'm guessing it's because of one or more of the changes that I listed above.  Does it really matter what is making her feel better?  Isn't the important thing just that she is feeling better? 

I don't know how to put this without sounding shallow but I really would like to know if Allie is feeling better because she is consuming less corn products.  Having a corn allergy isn't easy - and it's consuming my life with research, research and more research.  Since Allie doesn't portray any symptoms when she does consume corn, it's extremely hard to know if she's even reacting at all to corn.  I'm by far NOT a lazy mom but if we are going corn free for no reason at all, I feel it's a lot of extra effort wasted that could be spent playing with the girls or something more family orientated.  Our life is already consumed with all of Allie's medical appointments, insurance issues, evaluations, therapy, feedings, monthly enteral supplies, etc - I hate to add more to the mix if it's not needed.  I might completely be in denial here so I'm not thinking straight.  Maybe you are reading this thinking I'm nuts - can't she see that being corn free is making a difference for Allie.  But I'm sitting here saying that it's very likely Allie's vomiting has stopped because she is now on a blenderized diet and not receiving commercial enteral formula.  I'm also saying that maybe her behavior is better because she has learned to accept her feedings without the pump and she is older and able to communicate her feelings better. 

I know deep down I want Allie's allergy patch test result for corn to be a false positive - I don't want her to be allergic to it.  Having a corn allergy sucks but it's not the end of the world.  I have come accross a new corn free forum and I am learning that there are very few foods which are safe for people with corn allergies.  All the new information is overwhelming and I feel like I'm sinking and not sure how to get out of the corn world.  Of course I want to do what is best for Allie but I also need some definite answers.

I talked to her ENT doctor and Dietician this morning.  The ENT told me to feel free to start introducing corn again and see if she starts vomiting or if her behavior changes.  I know this would give us answers but I don't want Allie to feel sick if the corn really is a problem.  Our Dietician is working on getting me a specialist with allergies in hopes that they could help me pick safe foods for Allie.  She suggested in the meantime to stop searching the internet and just continue to do what we are doing with Allie.  She has seen great progress in the past two months and she said even if Allie is allergic to corn and consuming corn, it's obviously okay for her in the amounts she's getting because she's doing GREAT!

I'm sorry if you think I'm nuts and off my rocker - I just may be but I'm off my rocker because I'm fighting for my little girl.  My answers might be right in front of my face and I'm just choosing not to see them - I don't know.  If I knew, I wouldn't be sitting here typing this post right now.  I just want to do what is best for Allie  but I'm not sure I know what is best.  Even her doctors don't know - I was originally told to avoid giving her corn, however if she really wants something with corn I could give it to her.  There is such a fine line with her corn allergy and getting her to eat like a normal child the doctors are even confused.  The doctors dont't believe her corn allergy is her underlying problem but how do we really know?  One thing I know for sure....removing corn from Allie's diet is not going to miraculously make her eat like a normal child.  It will take months or years to wean her off her tube - and it will take intense oral therapy.  Allie is at the point right now where she simply just asks for a tube feeding because she doesn't want to eat orally.

So, for now I'm just going to continue what I am doing and focus on getting Allie all of the nutrition she needs to grow and thrive.  She is gaining weight and happy.  She was 25.2 pounds this morning - almost up a pound in a month.  That's amazing considering she hadn't gained weight the preivious 3 months.  I will continue to work at getting Allie corn free but I refuse to stress over the smallest amounts of corn.  If Allie starts showing any type of reaction to the smallest amount she's getting, then I will change my focus. But for now, what we are doing is working great for Allie and after all that's all I strive for - getting and keeping Allie happy and healthy.

Look at this face - wouldn't you be off your rocking fighting for her too!

Please feel free to weigh in and voice your opinion as to why you think Allie is doing so much better.  But, please do not judge me - I am simply a mom doing the best I can :)


  1. HUGS!!! I know this is what you were worried about...that you would change all of these things and not know what helped. Now you are there. I really don't have any words of wisdom or any thoughts of what helped over the other. I just want to show mu support and also share AGAIN how similar Allie and Haven are....
    Haven was weighed today and is 25.1's crazy how close they are in their progressions. I am glad we both have healthy girls right now...I pray answers come for you. This road is loooonnnnnnggggg and so trying. But we can do this. Like you said....looking into her eyes renews the zeal to fight. HUGS!! Hang in there!

  2. (((((((HUGS!!!!!!!!!!!!!!!!!!)))))))) Jodi my heart goes out to you!!! You are a STRONG mom and doing everything you can to help Allie, she is so lucky to have a mom like you. Don't take crap from people I would probably do the same thing that you are doin. BE PROUD that you are a STRONG WOMAN, MOTHER, and WIFE!! Thinking of you guys daily and praying for everyone!!! Take care and hang in there!!! HUGS!!!!!!!!!!!!!!!!!!!

  3. Judge? Never! Cheering you on as you dig in daily and find the strength and energy to help Allie. It is such a journey and no can understand your feelings so don't doubt your instincts.

    You are simply an inspiration, Jodi. I wish I had your energy!

  4. I judge you to be a badass mommy. I don't know the answers, but want to share some info, and draw your own conclusions. First, I have a tree nut allergy - I go into anaphalatic shock. I think Allie's corn allergy is more like my shellfish intolerance - I vomit and feel like I'm going to die until it's out of my system. Assuming that's the case, my mom was dx'd with corn and mold allergies (intolerances) in the mid-90's. I hear ya on corn being everywhere. She went corn-free for a long time, and felt pretty good. Her Dr said there is a compounding effect, and after some time off it, she may be able to tolerate smaller amounts. So not corn at every meal, and for her, not corn and mold (ie cheese) at the same time. Over the years, she introduced both and she was ok. For a while. Fast fw through a fibromyalgia dx, lots of testing, and finally a Celiac dx. In retrospect, she thinks that her no corn/mold diet somewhat forced her to go gluten free, and that is why she felt better. She is currently GF but eats both corn and mold in moderation, and is doing great. It took her guts a bit to heal after going GF, maybe a couple of months, but the were likely fairly damaged at that point.

    Oh I have more :) Harmony was on breastmilk for 2 months, but would scream and scream. We tried Alimentum, she started vomiting. We tried Neocate (in desperation one night) and she was fine. So everyone assume MSPI. We did a few trials over the next 18 months (frozen BM, Alimentum, soy, etc) and everything caused screaming. So when we switched to the BD, I figured we'd have to keep using the Neocate Jr as her "milk" base. But I decided we needed to just KNOW, all in, balls to the wall, big servings so we wouldn't question if she reacted. So first we tried Lactose Free Fat Free Milk. It was fine. Lactose Free Reduced Fat Milk was fine. Then her molars started in, and we got scared, because it's hard to tell what's causing what. But we kept going to regular milk. Went from Skim to 2% to Whole. And now we put Tofu in her blend too. So since Jan 15th, our "MSPI" baby went from Neocate Jr to eating whole milk and Tofu every day?

    H never had allergy testing, never confirmed a dx of MSPI because they just said "well obviously she has it, look what happened." So I realize that is not the same as Allie's corn allergy. But based on all your info, I'm inclined to wonder how much of a culprit the gluten was to her feeling like crap. And if you want to test the corn, I say just test it and see what happens. But really test it, so you really know.

    I completely think it's legit to wonder, and to want to spend your extra time playing with her, not reading food labels and looking up terms. It's oddly freeing that I can just buy a normal gallon of milk. And gluten free isn't the easiest either, but oddly it's a fad now, and I don't find it as hard as corn-free (my mom lives with us, so we are sorta GF too cause I do the cooking - I haven't "gluttened" her yet!). But I also get the not wanting to cause her pain and suffering, cause that's what I was afraid of with our Milk trials. Should I knowingly give her something that I think might make her sick? But you won't know otherwise. And if you do and she gets sick, she'll get better, and then you'll know you are doing it all for a reason.

    I hope my rambling makes sense at least a little!