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!