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Sunday, August 5, 2012

Multiples with Multiple Food Allergies



pre-neocate
                                                         post-neocate

The following is a sponsored post for Neocate (and a factual account of our experience)
Mothering multiples, while incredibly rewarding, is no easy feat. Double the diapers, double the laundry, and double the feedings. Throw multiple food allergies into the mix and you really have a challenging situation. We were thrilled to welcome twin boys into our family (especially after having 3 girls in a row). From the get go these guys were miserable, fussy, and adorable.

At first their diagnosis was uncertain. At 7 weeks of age they developed eczema
(a very itchy rash) that gradually spread from their face to their torso as the weeks and months went by in spite of multiple visits to dermatologists (and many topical  steroids). Our babies slept little, grew very slowly, and fussed a lot. One night, my husband and I left the boys for a much needed night out (3 whole hours). I let the babysitter know that if we weren’t back in time for the next feeding to give them Similac (a milk-based formula). We returned just as one of the babies had had 1 oz of formula. I noticed that he was breaking out in pea-sized hives all over his scalp (easily visible since all he had was blond fuzz up there).

Fast forward past a dramatic ambulance run to the ER to a new diagnosis of milk allergy. I immediately eliminated all dairy from my diet and was awaiting a dramatic transformation in our babies’ behavior, weight, skin. It didn’t happen. I was confused. After food allergy blood work, we discovered that the twins were allergic to milk, soy, eggs, tree nuts, peanuts, wheat, and other grains. The list would grow even longer when we introduced solids. Knowing the enormous benefits of breastfeeding, I was committed to nursing them and had to radically alter my own diet. I dutifully eliminated the offending allergens from my diet (and lived on chicken, rice, vegetables, and non-dairy chocolate). Voila, the transformation occurred. Their skin became baby soft and smooth (not a trace of eczema) and they were much more settled.

While the skin and fussiness symptoms improved, their weight was still in the “failure to thrive range.” What to do? All of the regular formulas were either milk- or soy-based?It was a Pediatric Gastroenterologist, Dr. Amy DeFelice at New York-Presbyterian/Columbia 
 who introduced us to a medical formula called “Neocate.” She taught me to nutritiously (and calorically)maximize every sip and every bite they took.

I continued to breastfeed and supplemented with Neocate. The boys gained weight beautifully and safely.  They began to thrive in all ways. They plumped up a bit. My friend, upon seeing their new rotund look,  nicknamed them “tweedle dee and twiddle dum.”

For all of you struggling with food allergic babies.. hang in there. It really does get easier.
Don't do it alone. Seek out proper medical care and lots of support from people who've been there!

*The London Beth Din Kashrut Division (LBDKD) has approved the following products based on a detailed correspondence with the manufacturers: Neocate-Active (pareve), Neocate Advance (pareve), Neocate LCP (pareve).Consult  a competent Rabbi knowledgeable in the laws of kashruth before purchasing. 

9 comments:

  1. Wow! What a story. You're one dedicated Mama! Good for you. My son also suffered from pretty bad eczema starting at 4 months. He still get flares (mostly on his legs), but we've come along way.
    Great site. Very helpful and informative. :-)

    Be Well,
    --Amber

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  2. Thanks Amber.Us Moms do what we have to do to keep our kids safe and comfortable! All The Best, Tamar

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  3. This brings up some nice memories....are their allergies still severe?
    Post an updated picture too :)

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  4. Your story sounds a lot like mine in the beginning. My son had multiple food allergies, too. Except he refused formula and he was never failing to thrive. Granted, he wasn't sharing with a twin! :) He didn't ever clear up, though. He is just sensitive to too many foods. I applaud you for continuing to breastfeed even with the restricted diet. It is not easy. I ended up weaning at 12 months, because My son had more allergies that I hadn't identified yet, and it was just too hard to identify them with the delay of me eating them to when he reacted to them (sometimes not until hours after a feeding). He has thrived, though, in spite of his allergies. I'm so glad Neocate worked for you. I might have been able to use it if he hadn't been satisfied with what I was giving him, or if I had started it earlier.

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  5. Tamar,

    I love the post. It brings chizuk to all parents who struggle with the challenges of multiple food allergies.

    And now these very special boys will be Bar Mitzva. Schep much nachas!

    Moshe Zelig (continuing to watch with a smile from the sidelines)

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  6. Sounds all too familiar... We started off with the Neocate but also used "E028" when which is something that was put out by the same company as well as their toddler version of the Neocate when he got older, which I think had more protein in it and was better for his growth (as per Dr. DeFelice) After much difficulty we got our insurance to cover the cost of the expensive formula. Having my own child that was allergic to both milk and soy, we had no other choice but to use something hypoallergenic. I think that the coverage was something that was covered under "medical supplies" as "nutritional therapy" rather than prescription and required pre-authorization. Much red tape but once we figured out how to obtain the formula, it was worth it. Our son was also a failure to thrive with multiple allergies, multiple specialists but thankfully today he is doing much better.

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  7. CB, sounds like we've had similar allergy journeys.Glad to hear your child is thriving as well. Happy to hear your Insurance company covered Neocate. Why shouldn't they, eating is a medical necessity last time I checked.

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  8. I just discovered this site through your article on Aish.com. I wish that I had discovered it sooner. This is such a wonderful resource - thank you! My now two-year-old had a similar long journey that was complicated with Eosiniphilic Esophigitis which we are still working through. She is still on Neocate Jr. but I have been impressed with the amount of substitutions I have been able to find and am looking forward to finding more tips through your site. What I would like to know is if you have some advice about keeping your child safe and not feeling bad when they are jealous of what others are eating. Although I try my best to make as many foods for everyone that she can also have, she does get upset and jealous or simply curious sometimes and I am so nervous that she will get into something when I
    turn my back. (It's only happenned a few times so far but any trip to the ER is one too many!)

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    Replies
    1. So glad you find the site helpful Ayala.
      It is natural for a 2yr old to be looking at what everyone else has (all kids do that, even non-food allergic). You won't be able to prevent her looking at what others have at this age.
      Keep her supplied with allowable goodies and be vigilant. Try to strike that balance between being methodical but not anxious. You want her to be safe but feel normal too. Hang in there, it will get easier

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