July update -The Milk Experiment, Soybean Oil Trial

Wow. Our summer is going by so fast.  I can’t believe it has been a month since my last post.  We’ve been busy with summer camps, vacations, and trying to keep up with the constant maintenance of an older home/yard while squeezing in as much fun as we can.   I’ve got lots of recipes to blog and a two restaurant successes I’m excited to share, but in the meantime here is our July update:

Colin is doing great right now.  He’s a busy, talkative little parrot who loves being his sister’s shadow.  His crazy rash is finally gone.  Yay!  Although he still tells us about his “boo boo” spots and had a flare up of itching with no rash, I think we are done with that monster.

We are doing pretty well with the weaning.  We are down to morning and night with a few day/night sessions here or there when he really begs for it.  Unfortunately he has given up on rice milk.  He won’t drink it or any other milk substitute anymore, which has made weaning a lot harder.   We started a while back introducing him to the taste of Neocate Jr., an amino acid based formula for kids over age 1 with MSPI, MFPI, and other GI issues.  The unflavored version was terrible and the vanilla type only somewhat masked the bitterness.  He won’t drink it straight but have we have had great success putting it in smoothies/juice to help fill in some gaps in his nutrition.  The Neocate idea came from my own research, a discussion with our pediatrician, and then ordering from Neocate directly.  It is crazy expensive.  We couldn’t have afforded it as breast milk replacer, but it is doable as a supplement to his diet.

In my last post I mentioned that I had tried milk.  Well, that has almost been six weeks ago I guess.  My plan was to try a little and add a little more every few days.  I did start slow and Colin seemed to be doing great so I ate a lot more dairy.  A LOT more dairy.  I was eating it at every meal and loving it.  I actually felt better physically with dairy in my diet.  I won’t go into all the details for all of you dairy deprived folk but having pizza again for the first time and a chocolate dipped ice cream cone were moments of pure bliss.  What I didn’t expect was how gross plain cow’s milk tasted after not having it for so long.  I could taste the cow.  Ick!   Anyway, all this dairy indulgence was slowly getting into Colin’s system and at some point we crossed a tolerance threshold and he began having symptoms.  He gets a stuffy nose at night, snores and stops sleeping- just like when he was a baby.   He developed some eczema spots and so I stopped milk and within a week it got better.   So I had to back off the dairy.  Unfortunately I had purchased all kinds of dairy products.  Bad idea.  Learn from me and if you do a milk trial, go slow and remember that it could take a while for symptoms to show up.  I’ve recently started having some dairy but being much more strict in my indulgences.  If I just have a little bit here and there it seems to be ok.  We are also nursing less which helps.

We are now trialing soybean oil/soy lecithin.  Since these types of soy are supposed to be the least allergenic, we thought we would start there.   Plus it makes life/food a little less stressful.  There are so many foods, especially when traveling, that we can feed Colin if we don’t have to worry about soybean oil contamination.   Things seem to be going really well.  Colin hasn’t been sleeping well but it is hard to tell what sleep problems are actually due to teeth coming in, being almost two, and traveling.  His tummy seems to be ok and we aren’t seeing other symptoms so I think he’s handling the small amount he gets.  We don’t plan to go hog-wild with soybean oil.   I still think there is too much soy in our foods and its usually in the processed stuff that we shouldn’t eat anyway.  I will continue to cook soy and dairy free for the time being.

I’m not sure what we will try next.  My husband wants to try giving Colin milk cooked in baked goods, since lots of kids have success with that first, but we will think on it a while!  Things have been going well so I’m hopeful that a milk success is around the corner!

So that’s where we stand at our house.  Although the next month doesn’t look to be any less crazy, I will definitely try to get a few more posts up before a whole month flies by!


2 responses

  1. Thank you so much for your blog, I’m a regular reader but never found a spare moment to comment before! My two littlies have faced many of the same issues as your gorgeous little Colin. My nearly one year old daughter is still fiercely intolerant to soy, dairy, chocolate, caffeine, kiwi, avocado, banana, pineapple and red peppers. Jury’s out on tomatoes and strawberries which we have been trialling lately! My 3 y.o. Son is still dairy and soy free, he has been tentatively diagnosed with FPIES too. Oh boy, did we clean up a LOT of vomit before we worked out that it was the milk doing that to him (we thought dairy was ok for a few months last year) I couldn’t breastfeed him which broke my heart (at 12 weeks old he was pooping blood and below birth weight despite me being super strict on a total elim diet… I shudder just thinking about it, not a great time for any of us!) but he really thrived on Neocate and it made fiod trials so straightforward withiut the breastfeeding variable!
    My little girl though is still breastfed, exclusive until very recently when we have had great success introducing Elecare, the other brand of elemental formula. She wouldn’t take Neocate no matter how much golden syrup, icing sugar, breastmilk etc we mixed it up with, it gulped down Elecare straight away! I just mention it in case you wanted to try that with Colin 🙂 I am hoping to keep nursing until my daughter is 18 months – 2 years but wanted to supplement with formula as we will be dairy free for a ling time yet i think and my supply has never been great, so a little backup from formula would be good now shes so much bigger but still struggling on solids. I am very grateful to be in Australia at moments like these, elemental formulas are actually only available in prescription here and are heavily subsided by the govt… (8 tins costs $36…seriously dirt cheap really).

    Also, you might find some good stuff on the Sue Dengate website – we followed the failsafe diet to find a baseline with Penny and identify her intolerances (which was pretty much everything up until a few months ago!!). Its an australian website but it might be helpful still. Let me know if you need more info!

    Sorry for the rambling essay, I really just wanted to say (write?) that you’re an inspiration to me and very obviously an incredible mom. And I was so glad to read that Colin’s rash etc went away! Poor possum. Looking forward to more posts 🙂

    • Thank you so much for your comment! You sure are one great mommma- you’ve had a lot of challenges to overcome but it sounds like you are in a pretty good place right now. It is so interesting out these food issues seem to run in families. We always wonder if Hannah had some of the same issues but we never knew it. We could never get her reflux under good control. Thank you for the Elecare and website suggestions. I will definitely look into those. I don’t know why I never thought about Elecare! It would be great if it could reduce our “milk” struggles. I had a chance to look at Sue Dengate’s website for a few minutes tonight. (I’m sure you know- getting a few minutes in at the computer can be tough!) but it definitely looks interesting. Lots more there I’d like to read. Thanks again for reading and taking the time to write. It always feels amazing to hear from other people trying to navigate these crazy food intolerances like we are!

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