Check out my newest post about having a healthy baby after an older sibling with severe FPIES.
I will be transitioning all my posts from here over to my new blog: Defending Joy Once I get all the content transferred, I will delete this blog.
When you only have a few ingredients available, varied presentation helps keep meal time interesting. Since we are currently doing gut rest (no fiber) for Little Wiggles I have even fewer ingredients to work with than usual.
For lunch Little Wiggles gets:
Meat Broth: Whole Organic Chicken or Grassfed Tibetan Beef cooked with water and Salt
Meringue Crackers: Duck Egg Whites, whipped to soft peak, lightly salted, and poured onto parchment paper or silicone baking sheets to bake
Chopped Meat: The meat from making broth
Chopped Liver: Cooked with the rest of the meat, an important source of vitamins and minerals
When a child knows foods only by shape & color due to allergies, they combine pretend food in unusual ways: potato chip & marshmallow soup.
I make almond milk for Little Wiggles, which I use as an ingredient in her smoothie.
I start with raw organic almonds, and soak them for 12-15 hours with a pure salt. Soaking reduces the phytic acid content. Then I drain them, put them in a pot with new water and boil them for about 4 hours, and drain again. I boil them based on a study that introducing nuts in the form of boiled nuts reduces the chances of the child developing an allergy to the nut. The nuts go in the blender with half of the water, warmed, and 1/2 tsp gelatin. The gelatin helps keep the fat from separating, and gives it more of a milk texture for drinking (when cold). Blend on high, then strain through the nut milk bag. Return the almond meal to the blender with the second two cups of water (reserve 2 TBS water for rinsing the blender) along with 1/2tsp gelatin and/or other optional ingredients. Blend on high, pour into nut milk, rinse blender and dump through nut milk bag. will keep in the fridge for approximately 1 week. Can be frozen, but if using the gelatin, the texture will be affected by freezing.
Estimated nutrition info: http://nutritiondata.self.com/facts/custom/3155994/2
100g raw organic almonds
water for soaking
water for boiling
4 cups Gerolsteiner water
nut milk bag
1 tsp Great Lakes Beef Gelatin
1 TBS Almond oil
honey/sugar/dates to sweeten
When you only have a few ingredients to work with, it’s important to have versatile options. Eggs are a very versatile food, and nutritious too. Eggs can be used to make ice cream, pudding, crackers, breads, pancakes, quiches and a variety of other baked items. Of course, they can also be served on their own scrambled, over easy, or hard boiled. Eggs are one of only a few foods that naturally supply Vitamin D. Vitamin D deficiency is unfortunately common in American’s and in children with a limited diet in particular.
The food trial for chicken eggs was iffy, so we tried duck eggs, which were a great pass. I use duck eggs to make a variety of quiches for Little Wiggles. I love the ability to put a variety of vegetables in them for her. She still does not chew very well, so quiches let me add purées for improved digestion, while still letting her practice chewing.
I use a gram scale to measure out all of the ingredients in my quiches, to ensure the right nutrient ratios and cut down on the dish washing (no dirty measuring spoons/cups!). I prefer to make her quiches in silicone cupcake holders. It makes them just the right size for her to pick up, and the silicone holders go right in the toaster oven to warm them up.
These first two quiches below are all-in-one meals, with a good balance of vitamins and minerals. I like to use www.nutritiondata.com to analyze all my recipes, because it gives a lot of data. I find the nutrient balance indicator to be especially useful for visualizing what Little Wiggles needs more of. The first three recipes call for duck eggs, but an equivalent amount of chicken egg could be used instead.
If your child has a rare disease you will generally need not just one good doctor, but a team of good doctors. Since your child will be with you in the appointment, it is important to prepare for your visit to make the most effective use of the doctor’s time and your time. It is very easy to get distracted by your child’s needs or behavior and forget something during the appointment. When preparing for a visit with a doctor, start by documenting. Write down the symptoms your child is experiencing, and any factors which you suspect are influencing them. If you can, keep a journal with notes about when a symptom occurs, and the circumstances. Photos or videos are especially helpful. Next think about your goal for the visit. Is it a routine follow up, and you just want to track your child’s progress? Are there new symptoms that need to be addressed? Are you expecting a specific test to be run, or a referral? Write down what you expect from the appointment, and any questions you have for the child’s doctor. For example, if you are expecting a specific test, write down why you want that test. Also ask what the risks are for having that test done, what knowledge you will gain from the test, and how it will change your child’s treatment. These questions are also good ones to ask the doctor if they recommend a test during the appointment. For any treatment or test, it is important to understand what the alternatives are. Make a list of any specialists visited since you last visit with this particular doctor, and any important items from those visits. Bring copies of reports or visit notes if you have them. Even when doctors share visit notes, it can take weeks or months for them to get from one doctor to the next. Also make a list you can give to your child’s doctor of any dietary, medication, therapy, or assistive device changes since your last visit. Finally do some reading. If your child has a diagnosis already, read a few medical journal articles about their condition. If there is an support organization or parent’s group for their condition read their information. As you read, add new questions to your list. Your child’s doctors are very important for your child’s health and development, so it is important to work with them, not against them. Remember your child’s doctor is human too. They can not possibly know everything about all the rare diseases that exist. If you are having difficulty with one of your child’s doctors, try bringing someone else with you to the appointment, such as your spouse, or if they are part of a hospital the hospital’s patient advocate. No matter what, stay polite and respectful. If you have concerns that your child is not receiving appropriate care, or your concerns are not being addressed fully, seek a second opinion. If you have questions after you leave, or realize you have forgotten to provide some information, call and leave a message for the doctor right away.
Since we are currently limiting Little Wiggles diet even more than usual, I have had to get very creative with cooking foods for her. She will not eat a sufficient quantity of food at each meal unless she is served several different items.
We are doing one week of only chicken/duck, camel milk, and duck eggs. Then we will do one week of Tibetan Beef (Yak-Cow cross breed), camel milk, and duck egg. We are also using a few condiments/supplements: Himalayan pink salt, raw honey, Fermented Cod Liver oil, Spirulina powder, and we hope to add grassfed Beef Gelatin soon.
For Breakfast Little Wiggles currently eats the following:
Mini-Quiches: 3 Duck Eggs, 2oz Camel Milk, 1/4tsp Himalayan Salt, chopped meat (Chicken or Tibetan Beef)
Pancakes: Duck Eggs, mixed with a little Camel Milk, Raw Honey, and cooked in Duck Fat
Greek Style Camel Milk Yogurt: Raw Camel Milk, cultured for 24 hours with MegaFlora, then strained to leave the solid portion
I will continue this series on cooking food when you only have a few ingredients to work with. If you would like to be notified of future posts, you can sign up to follow my blog by putting your email in the box on the left. You will not receive any other emails from me, and your email address will not be shared with anyone.
Little Wiggles was an early talker, she started saying “em” at 5 months old when she was hungry and wanted milk. By 8 months old she had three words. Unfortunately the next week she started having a chronic FPIES reaction. It took us over a month to get her back to baseline, and by then she had lost a pound, all her words, and all of her consonant sounds except “da”. For the next six months we only heard “da” and crying from her. As she was finally starting to incorporate new consonant sounds in to her babbles we also started camel milk.
March 18th Little Wiggles had her first camel milk, and March 31st she started speech therapy. April 5th camel milk was deemed safe and I stopped breastfeeding. At that time she had a few consonant sounds, but no words, and one sign that she used. For the next three months she had 0.5-0.75 cups of camel milk yogurt each day. She is currently getting more as I mentioned in my previous post.
Little Wiggles has made great progress in the last three months. She now has to 14 signs and 30 words. Some signs and words overlap, for example she started signing more first, but now she also says it. And some words she will only say if she has been prompted within the previous 5 minutes, most she will use spontaneously though. She is still slightly delayed on receptive language. So we are continuing with speech therapy to help with spontaneous speech and receptive language. I am confident that she will be able to reach her full potential and once again show advanced communication skills for her age. We are very glad we found camel milk.
To learn more about the healing properties of camel milk, check out this study.
A few months ago I came across the idea of using camel’s milk as an alternative for children with allergies to cow’s milk. This was particular interesting to me, since Little Wiggles had reacted to both cow’s milk, and goat’s milk. She was tolerating sheep’s milk in my diet while breastfeeding, but if she failed it directly, I would have had to stop drinking it, and all my pumped milk would no longer be safe. As I did more research on camel milk and how to acquire it, I learned that some parents have used it in non-verbal autistic children, and seen gains in speech. Since at that time Little Wiggles was 14 months old, with no words, that sounded promising. So I found a farm selling camel milk and placed my first order. After the food trial for camel milk was successful, I came across another piece of interesting information. Some doctors in Israel did a study on using camel milk to heal allergies in children. The 8 children in the study were given camel milk exclusively for 14 days, then given food and camel milk. At the end of the study, all 8 children were completely healed of their allergies!
We are doing 14 days of gut rest with Little Wiggles, similar to the protocol in the study above. We don’t have enough camel milk to meet all her calorie needs, but for two weeks she is only eating her safe meat, duck eggs, and camel milk. The first two days successfully stopped diarrhea that had been ongoing for 24 days, so that was great. It has been 3 months since we first started the camel milk, and she is definitely talking now :). We have been doing speech therapy also, so I can’t give camel milk all the credit, but it does seem to have helped. Also since adding camel’s milk I stopped breastfeeding and Little Wiggles gained 10 percentiles on her weight chart. This means she is back at the growth curve she was born on.
Camel milk has gotten even easier to find in the last few months. Whole Foods carries it in California, or you can order it online.