Experimenting with formula replacement options – again

Finding something to feed Yirmiyahu has been an ongoing saga.  A while back I posted about needing to supplement nursing since he wasn’t gaining weight, and I made a homemade goat formula that I was very pleased with.  He was gaining weight on it, I was delighted that he was getting high quality real foods and he looked great.  Then we couldn’t get raw goat milk, so we used pasteurized goat milk instead.  Then the company that produced it had some kind of restructuring and the goat’s milk disappeared from the stores for a time.  My milk supply kept dropping and the supplemental bottles had become his mainstay.  So I had no choice but to buy formula.

Somewhere in there, Yirmiyahu got sick.  I assumed it was a cold that would pass, but it didn’t – his breathing became noticeably raspy and stayed this way beyond the time a virus should have passed.  I felt this was due to a milk allergy, though the doctors told me it’s because he has Down syndrome.  I asked them why his breathing was normal for the entire time that he exclusively had mother’s milk, and they said it was just a coincidence.  Yep.  Three different pediatricians saw him and all recommended we use a nebulizer, which we tried but it wasn’t helpful.  When I told his physical therapist my concern, she said as long as he gains weight, it’s not such a big deal – but if you’ve ever struggled to breathe, you know that it’s far from a small deal.

When the goat milk became available in the store again, I immediately went back to it.  His breathing remained noisy.  I tried the dairy formula, and I couldn’t tell if it was a coincidence that he seemed a little better or not.  I tried again a couple of weeks later, and after just one bottle of pasteurized goat milk formula, he was obviously more raspy.   I reluctantly back to the formula since I still didn’t have access to raw goat’s milk (the herd had been dried out, as was the herd of a friend who had been contacted on our behalf) – but his breathing still wasn’t good.

I took him to a naturopath for cranio sacral work several weeks ago and she right away commented on his breathing.  I told her that I felt it was caused or at least affected by a dairy allergy, and after a few minutes of observing him, that was her assessment as well.  She watched him drinking his bottle and noticed that he began squirming and showing signs of discomfort, and she showed me small red bumps on his knees and behind his ears that were signs of what she called ‘asthma of the skin’ (this is a translation of the Hebrew, I don’t know what it would be called in English; an Israeli friend told me it’s not eczema but didn’t know what it is in English).  She suggested a non dairy formula and I told her I really didn’t want to try soy, but she felt it would be better than dairy.

So off we went to buy the soy version.  You don’t know how hard it is for me to feed my baby formula, it’s just so much not the way I believe that babies should be fed.  (If you’re wondering what I mean, just look at the ingredient list – the top ingredient is some kind of sugar, skim milk powder for the dairy version and then lots of vitamins added in.)   And to give the most nutritionally vulnerable member of our family this stuff…..but his breathing really worried me.  Within three days of the soy formula, his bottom was bleeding, he had red rashy marks on the top of his head and the skin all over his face looked bumpy.  No more soy.

At this point I became determined to build up my milk supply again so that he could have my milk.   I notified my family that this would be my top priority.  I spent an entire day in bed with Yirmiyahu, just nursing, pumping, eating and drinking lots of fenugreek tea (to increase milk production).  I was trying to pump about every 1.5 hours, since I learned that what I had been doing previously (every three or four hours) wasn’t enough.  I continued doing this for the next several days to the best of my ability, working around appointments and the things I needed to do.  And there was hardly any increase in my supply.  At this point my reality and my desire to nurse Yirmiyahu collided and I had to have a very honest talk with myself about what I was capable of.  Back to the dairy formula for lack of a better choice.

Last week I had to take Yirmiyahu for blood work and his pediatrician told me his breathing was worrisome.  I agreed and told her that I planned to switch him to a different milk substitute as per the suggestion of our naturopath.  She became very annoyed and told me for these issues you don’t turn to a naturopath, you go to a doctor.  She then suggested we give Yirmiyahu two different medications daily via an inhaler- one medicine four times a day, one to be given twice a day (one is a steroid).  How long was he supposed to get this until it made a difference, I wanted to know?  She said they were to be given daily the entire winter.

We bought the medications and dh gave it to Yirmiyahu for a couple of days while I was in the hospital with ds13.  When I got home, he told me that he was concerned at the reaction to this that Yirmiyahu seemed to be having.  My strong feeling was is that we need to remove the allergen first and then see if there was still a breathing issue.

And that brings us to today – I began giving Yirmiyahu almond milk and will be observing his reaction for the next week.  I hope that this agrees with him; if I could get raw goat’s milk again I’d go back to it in a second.  Hopefully this is the point where he starts to get better!

Avivah

27 thoughts on “Experimenting with formula replacement options – again

    1. LOL, you reminded me that I left out that part! I tried canned coconut milk, gave him an upset stomach. Then I tried making my own coconut milk from a fresh coconut, and that wasn’t too successful…

      1. You can make your own from unsweetened dry coconut – I believe it’s one cup coconut to one cup hot water (like almost boiling)-let sit until cool then blend and strain. Hugs to you – may your ds13 and Yirmiyahu both have a refuah shleima!!

  1. I have “asthma of the skin” in Israel, used interchangeably with “atopic dermatitis”. And the only cure for me was reducing food allergens. Oh, and when I was a child in America, they called it ezcema.

  2. Oy! refuah shileima to your little guy and to your ds. Letting you know we are thinking of you and davening for you. I wish I had a suggestion as to what to try. Is there an alternative way to get the raw goat’s milk?

  3. Asthma of the skin=eczema=atopic dermatitis.

    I don’t pretend to know diddly squat about nutrition (and I know you know a lot!), but just wanted to share that my friend’s 7-month-old was switched to almond milk after not tolerating multiple formulas, and he ended up in the hospital with severe malnutrition. Bottom line was that almond milk is not nutritionally sufficient for babies that age. I’m sure you’ll know what to do with this information better than I would, but I just thought I should pass that on to you in case it helps to avoid any problems.

    All the best,
    Kayla

    1. Thanks, Kayla!

      I didn’t mention that part of our plan is to begin solids so that he won’t be dependent on just milk. I haven’t yet done the nutritional analysis of almond milk, but with the addition of the supplements that he already gets I’m guessing that it will be pretty close.

  4. Is it an option for you to contact a breast milk gemach? Even if you put out a call via social media, I’m sure that many amazing ladies would donate. Lots of moms have a supply sitting in their freezers. Let me know if you need help with this.
    May both your sons have a refuah sheima!

    1. Naomi, I’ve thought of it and have no idea who to ask/how to access what might be available, and can’t even think of anyone to ask who would know locally about this. I’d love your assistance with this!

      1. I may have some (or be able to get) information for you. Are you able to contact me?

        You may recall I was sending breastmilk to Israel a few years ago for a friend.

      2. Hi Aviva,
        The best place for you to start is your local community or maybe Tsfat, since obviously local is easier transportation-wise. Have a friend post to the English-speaking Tsfat list (or I can get a relative to do this, but I assume you know people on that list.) If you can’t get sufficient supply locally, I can help do a FB campaign for you (anonymously if you prefer). I am pretty sure you will get a strong response from around Israel, and we can figure out the transportation if need be.
        If you think this is an option that will work well for Yirmiyahu, I’m sure we can get him all the mommy’s milk he needs. (you can email me to discuss more if you want. For the next 36 hours I won’t be so contactable, but after that we can discuss in depth if you want)

      3. I can help with a breastmilk campaign on facebook as well, if you want. I have lots of facebook friends in Israel, especially up north, so we may be able to get you donations. My sister just donated a whole freezer worth of pumped breastmilk to someone…

  5. I have lots of raw goat milk in my freezer here in the US. Ugh :( I had the same issues with #3. Like you I was the most successful with homemade goat milk formula. Prayers for you and your family! Crystal

  6. Wishing you success in finding the right thing for your little one. If anyone can do it, it’s you, Avivah. You are giving him nutritional supplements, right? It sounds like it….Much as I am not a fan of formula, at least they do have everything a baby needs to grow (unlike every other milk- or milk-substitute)

  7. Avivah I wish I could send you my breast milk! When one of my kids was 10 months old I couldn’t nurse anymore and have him a homemade rice milk formula. It was soaked and cooked brown rice with seaweed, salt and techina. I added lightly cooked egg yolks to the mixture. It’s a recipe from healing with whole foods. I added the egg yolk once I got into nourishing traditions.

  8. I also sent you a personal email to this effect, but there is some raw goat’s milk available in Yavniel at this time, if there’s a way to get it to you.

  9. If you can get on Facebook and hook up with Jacob Laderman, he lives somewhere where there are goats. And maybe you could put something out on the equivalent of Luach.com in Israel asking for raw goat’s milk for Yirmiyahu. It’s worth a try. Jacob was milking goats the last I knew. Somewhere there are milking goats still wet. Good luck. Hope to hear that you connected with him and that it was fruitful. Hugs.

  10. I feel so appreciative to all of you who commented as well as those who emailed me privately to offer help! I’m so touched and grateful.

    Naomi, Sara, and Ronit – thank you so much for these suggestions about breastmilk! I thought that trying to get mother’s milk for him was totally unrealistic and now I’m hopeful that maybe we can do that. That would be the absolute best option. I’ll be in touch with all of you about this, thank you!

    Chaya Dina, Crystal, Karen – thanks for the comments about the goat’s milk.

    Estee – thank you for the recipe!

  11. Oh, my sister wanted me to add “Because I eat dairy… And soy. And drink caffeine. And take two medications (though they are medications that are fine for breastfeeding). Is that ok?”

    Someone else wanted to know if you have a horizontal line across your thumb nail or big toe, which could signify a hormonal issue that would be preventing your milk supply from increasing as it should…

    1. I don’t have a horizontal line and don’t think there’s a hormonal issue – I have a very demanding life that requires a lot of me and this is where I think the root issue is of not being able to increase my milk supply – you need to eat well, rest well, drink lots, nurse lots – and I can’t do more than one of those things on a regular basis.

      I really appreciate your sister’s offer! The soy and dairy aren’t an issue, though the medications might be. Yirmiyahu is a bit fragile right now.

  12. Someone else I know said that you should email her- she helps heal people using natural methods, she lives in netanya, but can also help via phone/email, and she said if money is an issue, she takes as little as 18 shekel. she asked that you please email her at sigalitgn@barak.net.il

  13. Have you considered giving him food high in fat like egg yolks? Almond milk really isn’t enough of the right fats and the lack of nutrition could cause him permanent delays. Also, you have ALL of my empathy because I went through this same thing with my first two kids.It is a very difficult process to navigate through. Coconut also upsets my kids’ stomachs.

    Have you also considered take lactation-inducing medication? I have a friend who swears by it. Her kids have insane allergies too. How about a milk bank for mother’s milk donations? I’d be happy to try to hook you up with these options to the best of my ability if you like.

    1. Thanks for the empathy, Tzipporah!

      No, I won’t give him egg yolks yet, but I plan to start giving him avocado soon (he’s been sick for a week and a half and not eating much, or I would have tried this already). You’re right about the almond milk being limited in fat, I add butter oil and cod liver oil. I’m using the almond milk at the recommendation of our naturopath but I’m really hoping to find him some mother’s milk, which is far and away my preference. That’s my project for the week. :)

      I have not even a tiny bit of emotional/physical ability left to try to get the nursing going again. You can’t imagine what has already gone into it, and after almost six months I’m totally maxxed out. My husband has been wanting me to stop trying for a while because he sees how much it’s taking out of me but didn’t want to say anything. The thought of trying one more thing to get things going again is beyond stressful; I just can’t do anymore than I am/have.

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