Last week after a visit to the doctor it became apparent that Yirmiyahu isn’t gaining enough weight just with nursing. I have a theory about why that is – I think it’s because his palate is high and narrow, and he can’t create enough suction to keep the milk in his mouth. I see there’s a lot of spillage as he nurses and don’t think it’s a milk supply issue, and his sucking is good so I don’t think it’s caused by a weak suck. Whatever the cause is, I needed to do something to address the lack of weight gain.
The day after the doctor visit, I had to travel to Tzfat and hoped to buy goat’s milk from a friend, but we weren’t able to connect in time. Fortunately, she has a neighbor who studies here in Karmiel and she was able to send it with her, and two days later I had two liters of fresh goat’s milk to use. Until I got the milk from her, I used formula from the store. His weight was a really big concern to me – at ten weeks old, he was only a pound more than his birth weight (7 lb) – and immediately remedying this was my top priority.
Before I tell you what I did to make my formula, I’ll share why I didn’t want to use store formula. Firstly, just looking at the ingredient list makes it hard for me to countenance giving this to a baby. It’s very artificial and processed, and I avoid this kind of food for my entire family; since babies with T21 frequently have digestion issues, finding a healthy alternative is especially valuable. I didn’t want to use cow’s milk (even with homemade formula) because so many kids with T21 have allergies and issues with casein and I’d rather take a proactive stance and avoid this issue rather than wait for a problem to later show up.
Soy formula has its own issues; I read a while back that soy formula isn’t supposed to be sold in Israel anymore but I don’t know if that’s accurate, and since I sent dh to the store to make the formula purchase I wasn’t able to see if it was on the shelf. I don’t know what the formula alternatives are available for those with milk allergies, but there must be something. I tried coconut milk but it seemed to upset his stomach, and even if it had been okay for him, what I buy here has stabilizers added and I didn’t want to give him something with preservatives. I tried the broth formula based on Nourishing Traditions and he didn’t get full – he kept drinking and drinking with no satiation.
Then I thought of goat’s milk. It’s high in fat, very digestible and low in allergens. My adaptation of the recipe in Nourishing Traditions is below:
Homemade Goat Milk Formula
- 2 c. raw goat’s milk
- 1 t. cod liver oil
- 1 t. extra virgin olive oil
- 1 t. butter oil (I don’t have this yet but plan to add it once I can get it since it works synergistically with the cod liver oil – I hope to have it in about a month)
- 1 t. organic blackstrap molasses (plan to add this to the next batch)
- 2 t. extra virgin coconut oil
- 2 t. powdered nutritional yeast
- 2 c. filtered water
Mix everything together, and shake well. Yields 36 oz.
I didn’t add nutritional yeast to the first batch, because I wanted to see how he tolerated the basic mixture. If there would have been a reaction, it’s easier to narrow down what is causing the issue if there are fewer ingredients to start with. The nutritional yeast is particularly important when the formula is made with goat’s milk, which is rich in fat but doesn’t have folic acid, but this is something that some children react to so it’s good to be aware of that and pay attention to how your child responds.
Now that I’ve made a batch with nutritional yeast and it’s been tolerated fine, I’ll add in the blackstrap molasses. I’ve written about blackstrap molasses before; it’s a good source of iron and B vitamins.
I add a vitamin supplement called Nutrivene-D twice a day to his bottles. I don’t add this in with the formula because I can better control the amount he gets by adding it to the bottle right before I give it to him – I don’t know in advance how much he’ll drink in the course of a day of the homemade formula and I want to be sure of his dosage. This is a more than just a powdered vitamin supplement; it’s targeted nutritional intervention (TNI) and is formulated specifically with those with T21. At his body weight he’s supposed to be get 1/2 teaspoon broken up into two different feedings.
I also add probiotics to the first bottle of the day. Again, I find it easier to control his intake by doing this separate from the formula mixture. I give Yirmiyahu .05 grams of the 11 strain powdered probiotic for those on the GAPS diet (I happen to have this in the house and it’s a high quality product, but you can use any decent probiotic) – this is equivalent to 13 billion cfus. I started giving Yirmiyahu probiotics when he was four days old and in the NICU – when I pumped milk at home, I added the probiotics to it and then gave it to them at the hospital to use in his feeding tube. I took him for cranio sacral work when he was 2.5 weeks old, and the practitioner commented that I must be giving him probiotics – I said I was but asked how she could know that, and she said that by looking at his tongue she didn’t see the signs she would have expected for a baby who had been on high dosages of antibiotics.
I’m still experimenting with how to most efficiently prepare this formula, but what I did with the last batch was to add everything but the water at one time. When I was ready to prepare a bottle, I added an equal amount of hot water to the amount of formula I was putting in. This made warming it up very simple, and also quickly melted the coconut and olive oils, which solidify in the fridge.
Yirmiyahu has been taking this for over five days now and is doing great. Several of my family members are sure he looks as if he’s gained weight; I haven’t yet checked that (I will in a couple more days) but he’s having plenty of wet and dirty diapers again (which he wasn’t having when I was exclusively nursing). I keep an eye on his stools to see how he’s reacting to what we give him, and this looks like it’s working well for him. The color of his stools on the other things I tried weren’t right – blackish greenish on the broth, lime green on the coconut milk (sorry to be so graphic but this is how I could tell -along with the consistency – that the other things I tried weren’t being properly digested). Now they’re yellowish curds again.
The only day that he had broth formula was when I had to travel to Jerusalem for the day. When I got home, I immediately saw that he looked terrible – peaked. His face was blotchy and pale. This reverted back to normal within a day of nursing, and the skin on his face is still looking good with goat’s milk.
For those who are wondering, I’m still nursing him. I nurse him before I give him a bottle so he gets the benefits of mother’s milk as well as of nursing, and then give him homemade goat formula to boost his calories. He’s drinking huge amounts of this formula, and it’s very gratifying knowing that I’m giving him a high quality nutritionally well-balanced food that is helping his digestive health in both the short and long term rather then harming it.
As far as the cost, I pay 15 shekels for a liter of raw goat’s milk; this works out to approximately $15 a gallon. It’s not cheap but neither is formula – the cost is pretty similar – and this is definitely a better investment in his health!
Avivah
(This post is part of Fat Tuesdays and Real Food Wednesdays.)
Hi Avivah,
A concerned blog reader of yours asked me to chime in here as someone who knows a bit about food allergies. You state that one of the reasons you prefer goat’s milk over cow’s milk is the low incidence of allergies to goat’s milk. You should be aware that cow’s milk and goat’s milk, while somewhat different nutritionally, are very similar from an allergy standpoint. 92% of people who are allergic to cow’s milk are also allergic to goat’s milk, so proceed with caution. If you have already determined that he is tolerating the goat’s milk and does not seem to be allergic, you can assume that he is probably not allergic to cow’s milk either.
On a different note, goat’s milk is not considered any more appropriate for tiny babies’ digestive systems than cow’s milk. Dr. Sears has an article on that, and you can also read about it here.
http://kellymom.com/nutrition/milk/milk-supplements/
One more thing–Soy formula is and always was available in any supermarket or pharmacy in Israel. While I’m not suggesting you use it (I would actually suggest milk-based once you’re going the formula route), I don’t want your readers to be misinformed.
Hope this helps and that Yirmiyahu continues to do great and to gain weight quickly!
Thanks for the information – I always appreciate the opportunity to learn something new.
(And if you’d like to introduce yourself, I’d still love to know who you are – I know you haven’t posted since October but I didn’t forget you!)
Hmm, this is actually my first comment here, but I’m on my work computer and I know there’s at least one other person in my office who reads your blog. (Actually, I think 2 others, but I’m not sure.)
By the way, I just reread my post and realize it comes across and somewhat condescending and makes me sound like a know-it-all. I did not at all intend to come across that way. While I don’t read your blog (due to lack of time), I’ve heard good things about you and realize that you are knowledgeable about a large variety of topics. I just wanted to share information that I knew would be important to you since you are so dedicated to your children’s well being, and in my haste, it came out sounding that way. I apologize if I hurt you in any way.
Since you share the same email address as someone else who has posted in the past under two different names, I assumed you were all one person! That person said she lives in Karmiel and has met me personally, so I was interested in what her name in real life was. I’m deleting your personal details but I’m glad to know a little bit about you. 🙂
I was glad you felt comfortable sharing your knowledge with me and my blog readers, and didn’t think you were being condescending so there’s no need for an apology, but I appreciate your sensitivity.
Are you sure it was this email address or do you mean the same IP address? I used to share this email address with my coworkers, but it’s been maybe 7-8 months since they got their own and this has been only mine since then.
If someone posting from my office said she lives in Karmiel and knows you, I’m pretty sure I know who it was. 🙂
Yes, I’m positive it’s the same email address, and it was last used by someone with the initials MS (or so she signed herself) in October 2011.
Okay, I know who MS is, and she did share an email account with me back then. 🙂
First of all, as usual, you are always so diligent to provide your children with the best! This is not at all a judgement as it sounds like the formula you make is nutritionally sound, but I am curious as to why with the time and expense involved in making this fresh formula, you didn’t supplement with your own milk by pumping? Shana Tova!
I second Dina’s question, since she already asked if for me! If you pump and give Yirmiyaho YOUR milk in the bottle…isn’t that the best of both worlds?
I have a friend who had to do this for 2 of her children..the pumps are SO much better now!
It’s a reasonable question since it seems like the most obvious solution. I was pumping and nursing for the first ten weeks, and I was totally exhausted. Though I was spending time with the kids, my life was literally revolving around nursing and pumping and the other things I need to take care of weren’t getting done.
I really tried to spend time doing nothing but nursing, nursing, nursing to build up my supply, but finally realized that to continue like that would be a disservice to everyone – me, my family, and especially Yirmiyahu. So I’m very glad to have found a solution that works for all of us, and also glad I can continue nursing him so he doesn’t have to lose out on the benefits of breastfeeding.
Avivah, I gave homemade goat milk formula to both my boys b/c nursing was incredibly hard for me for both of them for different reasons… I continued to nurse them part-time but the goat milk formula took the pressure off… I am really thankful for the natural alternative… and I was so stoked to see your post b/c I’ve actually created a kit that moms can buy to mix with the milk – it has everything they need to turn plain goat milk into a balanced nutritional formula for baby… check out my site – http://www.goatmilkmama.com – sorry for the shameless self-promotion, but it was so related to your post and I’m so happy to offer this option to moms, that I couldn’t resist!!! Feel free to not post this publicly to your page if you don’t feel comfortable doing so! =) ~Rina (Summer) Bethea
There actually is a contact button at the top of the page; if you go there you’ll see how to reach me – avivahwerner AT yahoo DOT com. But since we’re talking about formula here, this is a good place to ask.
I wanted to ask rina the person with the goatmilkmama site, what company she uses for the ingredients in the formula. How can I get all the stuff in israel?
Hi Rina, I was wondering if you know where I can get cholov Israel raw goat milk in nyc area? I really like the combination you created…
Aviva, would you still make and give this formula to your baby if you didn’t have access to raw goat’s milk, and had to use canned evaporated goats milk (but organic and unsweetened)?
I haven’t researched the specifics of the milk you’re asking about, and I like to learn about these things before I do something. But my instinctive response to your questions is that if that was the best that I had, then that’s what I’d use! You’d probably have to dilute it more when using evaporated milk, though.
Hi,
I’ve been following your blog for a while, mostly because of the info you one provided about kosher Rennet. We are connected through I+N in Baltimore (happy to expand on this through e-mail.)
Your blog became a touch more personal about 4 weeks ago, when my son Aryeh was born trisomy 21.
I have to admit to being something of a skeptic with regard to dietary supplements; I firmly believe that there are a huge number of snake oil peddlers out there. But I also figure that, for the most part, most of these supplements are safe enough that if they do no harm and make people happy, then why not? For a reasonably competent skeptical viewpoint, please see http://www.quackwatch.com/01QuackeryRelatedTopics/down.html
I took a look at the nutrition facts for Nutrivene-D http://www.nutrivene.com/dynamic_pages/NTVPOWDERPROF0111a.pdf and for the ingredients in your goat milk formula. I got about 1000 kcal and 15000 IU of vitamin A per batch. I need to review some more to differentiate between pre-formed vitamin A (retinoids) versus vitamin A precursors. I am concerned that the combination of the Nutrivene-D and the cod liver oil approaches toxic levels of vitamin A.
See http://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/ for general facts on vitamin A
-Jon
It took me a minute but I figured out your reference – your wife was in touch with me by private email.
I’m familiar with the Quackwatch perspective. I’ve heard it said only half jokingly that you can look at Quackwatch and if they’re against it, it’s probably something worth looking into! In the article you linked, a lot of emphasis was put on the lack of formal studies, but that doesn’t mean the results aren’t there. I believe that nutrition has many ways it affects the body, but mainstream medicine doesn’t recognize most of these.
I don’t believe that Nutrivene is just for a parent to feel like they’re doing something, but I also don’t think that every supplement is of value. Some of them aren’t worth anything, others may be of help but I’m not comfortable with them (eg piracetam) so I won’t give them. I look at it like this: you know what happens to a child with T21 without intervention. I want something better than that for my son, and I’m not going to wait for research to prove that this is beneficial when enough information is out there for me to feel comfortable that it has positive results. Let’s say in twenty years the official studies are done; it will be too late for my son to benefit. But right now there are parents who are seeing the kind of results I want to have, and though some might say that I’m unrealistic or in denial, I know that he can have a different kind of future than what is presumed to be typical for people with T21.
Regarding the vitamin A toxicity – I researched this several years ago and my understanding is that the natural vitamin A in foods isn’t the concern but rather artificial vitamin A. You’d have to have a massive amount of cod liver oil to overdose! But I’m not recommending that anyone do what I do, just sharing my personal choices.
Keep doing the research, it’s really important to know what you’re doing and why. My brain was on overload the first few weeks as I was getting into the biochemistry of gene overexpression and other aspects of T21, but it was worth it because I have a reason for what I’m doing and it’s based on science, not wishful thinking.
Congratulations on your new son – may you have tremendous joy as you raise him and your other children!
I am going to have to wait until after shabbos for a complete reply, but in brief:
I agree with you on the importance of nutrition, and on the fact that much of nutrition is quite scientifically unclear. We know the basics, eg. how many calories are needed, but don’t know much about secondary issues.
I am going to take another look at Nutrivene-D, but my gut feeling is that they are selling hope rather than demonstrated benefit. I don’t think they have sufficient evidence to actually target their supplement better than other mixes of supplements.
On the vitamin A, my understanding is that the split is not natural versus artificial, but instead pre-formed vitamin A versus precursors.
Retinol and the various esters of retinol are pre-formed vitamin A. These are fat soluble and accumulate in the liver. An excess of these forms can be toxic.
Vitamin A precursors such as beta-carotene are converted by the body as needed vitamin A. The only effect of overdose is to turn the skin orange.
Both types can be either natural or artificial. _Liver_ is a key source of natural pre-formed vitamin A. I am pretty sure that cod liver oil contains lots of pre-formed vitamin A, and therefore is potentially toxic.
In your recipe above is ‘t.’ a teaspoon (5ml) or a tablespoon (15ml)?
-Jon
And last question: what are your thoughts on using goats milk formula in place of regular formula when it’s the babies sole source of food? Unfortunately I am not breastfeeding anymore. I have been toying with the jump to goats milk formula for a while because I am concerned about what is in regular formula, however I also feel that millions of dollars of research has gone into baby formula and I don’t want my baby to be malnourished! I am just curious as to what your thoughts are…
I would personally be comfortable using this in place of regular formula, though you’d need to add some B12 if you’re not breastfeeding. I understand your concern about using an alternative to the tested formulas; I had a degree of this concern myself. I’m very comfortable using this for my baby, and he’s definitely not going to be malnourished on this! My ideal is 100% nursing but it’s a reflection of my confidence in this formula that I’m able to feel so good about every bottle I feed him without any guilty thoughts about how much better breastfeeding would be for him.
Kol Ha Kvod Avivah!! You are making what sounds like an awesome food for your son :).
A word of caution about the raw goat milk. E. Coli poisioning is VERY real and life threating – raw milk is def a vector for it regardless of how clean the set up is for milking. Even though You can flash pasteurize it to ensure that you have killed off the toxic bacterium that maybe present but still have it nutritionally viable esp since you are adding probiotics, and the other supplements.
How do you flash pasteurize the milk? It sounds like a good option.
The method we use is heating to 160°F for about 15-20 sec then rapidly cool using frozen water bottles to cool the milk down to below 50°F.
Many companies add vitamin D and vitamin A to their cod liver so I would check to make sure that the vitamin A & D in the cod liver oil you are using is really all naturally there( you may need to call & find out) and not added during processing. Green Pasture is the company that I use & recommend.
Good point, Gilla. I’m not using Green Pasture though I’m hoping to find funds to allot towards that as soon as I can.
I was able to begin using GP FCLO about a month after this post – good stuff!
Suri, contact Rina directly at her site with questions for her.
Do you know where raw milk- cow or goat can be found in yerushalayim?
Hey Avivah
as someone who has always struggled with breastfeeding (I have insufficient glandular tissue and just dont make enough milk) i want to wish you luck and let you know that its very possible to have a long term breastfeeding relationship with bottle supplementing. I finally got the hang of it by baby number three and was able to nurse her until she turned 20 months (and by that time, i was pregnant and was too uncomfortable to continue, even though she would have loved to).
your post is written with such positivity, its beautiful and encouraging to read. its so easy to get lost in the negative emotions of having to supplement (feeling like a failure, feeling disappointed, frustrated etc), that we forget that there’s a lot more to the breastfeeding relationship than the amount of milk we produce.
lots of luck and looking forward to hearing only good news on the blog
Hi Aviva, can I use goat milk kifir instead of raw goat milk? I do not have access to raw milk? Also, the Weston price foundation has a ton of other ingredients mentioned, I like your version better, it looks more affordable. What butter oil are you referring to? Can I use regular cholov Israel butter?
Haven’t been able to read your blog for a few weeks as we suddenly had no internet. I am so glad to see you have come up with such an excellent formular for your son! Just wanted to encourage you to continue doing, as I believe you have, what is best for your child as your own research shows and check out contrary information but ignore that which is simply critical just because what you are doing is not considered normal. I get a lot of this myself. By the way I get goat milk that is said to be flash pasturized through a friend at 7shekles a liter. She buys from an arab woman a few minutes from Karmiel. I haven’t checked up on the pasturization process she uses because I use it to make yogert and kefir for an older child and would heat it some myself for this purpose. If you want contact information for the place my friend gets it, just let me knowvia email. You are such a great mom! Keep up the good work.
When do you add probiotics? With all the other stuff or after you warm it?
It depends if I’m adding boiling water or not; the main thing is not to pour very hot water on it since it can kill the good bacteria.
So if I’m pumping milk and adding it so the daycare here in israel can just warm it up, that’s probably ok?
Yes. 🙂