When we got the diagnosis of cerebral palsy a week before Gavin's first birthday, I didn’t quite believe it. To be honest, I’m still not convinced. Regardless, I knew that he’d suffered some type of insult to his brain... regardless of what his diagnosis was. (A diagnosis that never came before he died - and may never come!) I think a lot of focus is put on the physical therapy aspect of treating CP, which is great! But I always felt like Gavin's physical and developmental issues were a symptom of something else going on inside his brain. I believed the damage was in his brain, not his legs or his arms or his trunk - so I wanted to find a way to somehow start the healing process there. I searched and searched the Internet, or as I like to say, attended “Google University.”
At the time, I was eight months pregnant with Brian and Gavin was still drinking from a bottle. Doctors had been really urging me to get Gavin a permanent G-Tube for feeding - but I strongly, more like adamantly, refused. I was determined to feed him by mouth and I thought if I let them place a tube, there was no going back. (*note: I am not judging anyone who went the tube route! Every child and ever circumstance and every parent is different. This is just a recount of our experience) Every day - many, many times - I would put things in Gavin's mouth. He was very defensive and really hated anything coming at or into his mouth - even feeding him his bottle was hard! He had severe reflux - not to mention so much trauma from his long hospital stay and subsequent nasogastric tube for months.
I bought a NUK brush and would use it to rub his gums and let him try to bite it. I'd feed him by syringe throughout the day, like a little bird. I really tried to reduce his defensiveness. I also used a child's electric toothbrush.
In the meantime, I discovered that there were centers in my area that specialized in treating brain-injured children: The Institutes for the Achievement of Human Potential and The Family Hope Center. We couldn’t afford to attend their seminars at the time with a new baby on the way, but I found a common thread between the two: Both had a doctor that had worked for them named Coralee Thompson. I googled her and tried to read everything she had written or was written about her. I discovered that she specializes in treating brain injured children through nutrition. She no longer worked (or lived) on the East Coast and so - like a total stalker - I tracked down an email online. One day, I sent her my desperate plea - please help me help my son! I crossed my fingers - hoping it would at least reach her - and she wrote back from her home in Arizona!! I was thrilled when she agreed to work with us and we quickly scheduled a phone consult. Her philosophy is that eating good-quality food can improve the quality of brain function. It's really simple, but too often good food is the last priority when it comes to "therapy."
Our goals with Gavin, besides to help improve his brain function, were to gain weight and wean him off his reflux and motility medications. Here are the changes we made immediately:
• We eliminated all dairy products, except for butter, to help with reflux.
• We gave him a half teaspoon of (flavored) cod liver oil once a day. The fatty acid found in fish oil, DHA, is critical for brain and eye development. I would literally squirt it into his mouth with a syringe.
• We fed him protein at every meal—chicken, lentils or salmon.
• We minimized starches and we didn’t combine them with animal proteins, since that can result in stomach problems like constipation and reflux. Dr. Thompson gave us a list of the best starches, some of which are brown rice, lentils, quinoa and yams.
• We gave Gavin six types of vegetables daily, which I accomplished by making a vegetable stew. Every stew is different! His average stew could include celery, leeks, carrots, parsnips, spinach, scallions and peas. Believe it or not, the stew was delicious and combined well with anything. In the beginning I would feed him the stew from a bottle and cut a bigger opening in a cross cut nipple so the stew could get through.
(** All puree recipes are at the bottom of this very long blog post! **)
• We added a teaspoon of coconut oil to his bottles. This saturated fat is easy to digest and also improves immune function. We also put olive oil in foods; in general, healthy fats like olive oil (rich in unsaturated fats) are critical for energy and brain development.
• Another thing we did to boost his caloric intake was to add two teaspoons of agave nectar to his foods. It’s mostly fructose and doesn't need digesting. This was a GREAT tip when spoon feeding Gavin. The sweet taste really helped him eat. She now recommends using either raw honey (if the child is old enough for honey!) or date powder.
About a month after I made all these changes, Gavin had weaned off one medication completely. He was still on two, but the dosages were dramatically reduced. We rarely saw him suffering from reflux symptoms at all. His bowel movements, which can be an issue with kids who have CP, normalized. Eventually, he was off ALL of his medications - which was a dream come true.
About a month after we changed his diet, I also started having a craniosacral therapist come to our home to work on Gavin once a week. After four months of the dietary changes and three months of Craniosacral - we saw amazing results. Gavin started turning pages in books, purposefully activating his toys, drinking from a straw, vocalizing more, trying to scoot, sitting up assisted and holding his head a lot better, holding onto objects, and opening his hands (which used to remain fisted) a lot more. To us, these accomplishments were nothing short of a miracle. We tried to pick out things that the Family Hope Center or the Institutes did to help children and attempted to recreate these experiences at home. This is when we decided to do Hyperbaric Oxygen Therapy in our home and bought a chamber.
Dr. Thompson was an incredible source of information - and I "devoured" everything she suggested. Here are some of her other ideas and tips that really helped me help Gavin:
She gave me the "lightbulb" moment when I asked her if she had any thoughts on getting Gavin's eczema patches under control. I had been given topical prescription cremes for him, but was really against using them. She explained to me that skin issues often aren't really helped by slathering things on top of them. It almost always starts internally and almost always can be fixed internally. What is he exposed to... ingesting... breathing? We knew from infancy that Gavin had contact dermatitis - if anyone washed their clothes in strong detergents (scented, dyed, etc.) and held him - or even touched him - he would break out in a rash. We started washing everything in Dreft - even our own clothes - and that helped tremendously. And we asked anyone who helped us at the house (aides for Gavin) to use Dreft or at least unscented/dye free detergent on their clothes. We also eliminated strong bleaches from our cleaning supplies and stopped burning any scented candles. And no more perfume or cologne - not that we were that fancy with two babies in the house! To help him topically for comfort, I would use coconut oil. It looks like solid "Crisco" in the jar - but I would place the jar in a bowl of warm water while I had Gavin and Brian in the bathtub. By the time I got them out, it would have liquefied. It was the best moisturizer - and they smelled good enough to eat!! I still do that to this day. It's a wonderful, natural moisturizer and absorbs quickly not leaving a greasy residue (like Aquaphor) that would stain their clothes.
She also suggested giving Gavin a wide variety of smells... which is very important for the brain. You can get a few essential oils like peppermint, sage, orange, lavender - and also some unpleasant smells (think rotten food, dog poo, etc.). The smells stimulate the emotional and memory centers of the brain. She recommended about five pleasant smells three times a day and five smells of unpleasant two times a day. The other sensory pathway is touch and she suggested giving him different textures and temperatures to feel on his skin. Anytime we gave him a sensory experience, we told him what it was so that he developed a language for it. The language never came - but we always worked on the assumption that Gavin understood and was taking everything in. I looked forward to the day that he would tell me "Mom, what was up with you making me smell that $%&T?!!?"
Over the years, Dr. Thompson has become a friend to our family and we are still in touch to this day. I contacted her last night to see if she would be willing to consult with anyone who would like help for their special needs child, and she agreed. You can contact me through this blog and I will help you reach her. But first, I highly recommend that you check out her book - which is filled with great nutritional tips and recipes for your child - and you! Special needs are not required for reading this book - it's great for anyone who wants to feed their child's brain! You can find the book HERE.
We were eventually able to introduce milk again with no problem. And I discovered the GREATEST substitute for giving Gavin anything for his constipation issues - Kefir! Ed would buy Lifeway Kefir in a two pack from our local BJs Wholesale club. Every morning we would give Gavin half a cup of Kefir (blueberry or strawberry) while we were mixing up his breakfast and he loved it. More importantly, his digestive tract loved it - and he would have BMs like clockwork every single day. Kefir really changed his life. I even gave both boys an extra dose of concentrated Kefir each day for quite some time. I used "inner-eco" Dairy Free Probiotic Kefir (fresh harvested coconut water) in berry flavor. One tablespoon a day. They really didn't get sick very often - and rarely needed antibiotics.
Hippocrates said, over 2000 years ago, that "All disease begins in the gut." I never gave this a second thought... until Gavin.
Here are my basic puree recipes. I would jazz them up with other ingredients when mixing them together for a meal - but I always made them and froze them just like I describe here. Ed and I would store them in quart and pint containers - the kinds that Chinese restaurants use for take out.
So, yes... while we were busy feeding our children's brains and slaving in the kitchen making baby food... we were eating take out at night like two exhausted parents. *smile*
We made our food in bulk quantities. It helps that we have one big freezer in the basement and two refrigerators (one in the garage) with freezers. We did this for Gavin's food! We'd use a large Kitchen Aid Food Processor to make chicken, fish, lentils, quinoa, yams, vegetable stew, banana and avocado. Here's the rundown on each!
We used Rotisserie chickens and would buy 4-5 at a time. Peel the skin off - eat that all yourself. It wouldn't be right to throw it away. Ha! Pull the chicken apart in pieces. You can puree it with low sodium chicken broth until it's smooth. We usually used sugar free applesauce - Gavin loved that. He also loved when we pureed it with fresh mango. Or - you could just use water.
We would buy frozen Tilapia and, as it was defrosting, we would marinate it in olive oil and Turmeric. Bake it in the oven on 350 for about 20 minutes - and then we would puree it with some of the veggie stew.
There's a local produce stand near us that sells jumbo sized Yams. Ed would buy them by the case! They are so easy to make - and make the house smell so good. Wash them, poke holes in them, and bake them on 350 (on a cookie sheet lined with foil - they get messy!) until a knife slides in like butter. Peel the skin off (it's okay if some pieces stay on - it's good for you!) and process them with loads of butter. Yams were Gavin's absolute favorite food. So much so that unknowing doctors asked if he was jaundiced every now and then. Nope? He just overdid it on the Yams!
Lentils are super easy to make and are a great source of protein. Make them in a pot (I would make 4-5 bags at a time in a huge pot) and puree them with loads of butter.
Quinoa can be tricky to puree as you have to play around until you get the best consistency. Make it on the stove and use butter and applesauce to puree it with so it doesn't get too pasty. Quinoa (keen-wa) is so good for you - they call it a "Super food."
Avocado is easy too! I would cut it in half, remove the pit and then squeeze them like a lemon to get the insides out. They puree so easy. Bananas are the same.
The veggie stew is an easy way to ensure that kids eat several servings of vegetables a day. Here is what we would include in an average stew: Parsnips (they are high in calorie and naturally sweet - and they help make the stew taste so good!), Leeks, Celery, Carrots, Peas, Green Beans, Yellow and Green Squash, and sometimes Corn... Broccoli... and Spinach or Kale.
Chop the parsnips, carrots, leeks and celery and put them in two big pots with olive oil and turmeric. Stir them frequently until they are soft. Then add all the other veggies and continue to stir every so often as it simmers. There's no big secret to it, really. When everything is soft, puree it. Usually the moisture from the veggies - plus the olive oil - is enough to get it smooth in the processor. If not, just add some water.
You'll notice I added Turmeric a lot. It's a great spice to use for inflammation, eczema issues, an antioxidant and an antiviral... and I added it to Gavin's food for all of those reasons.
I hope all of this information - or even one little tip - can help someone with their own child! In the beginning, everything Dr. Thompson told me to do completely overwhelmed me. I didn't know what Quinoa was - let alone how to spell it - or even make it! I'm a total goofball in the kitchen and people that knew me well would NEVER have envisioned me making my own baby food. But honestly? It was not hard. It was cheaper than buying food... it tasted better (Gavin and Brian hated the processed baby food after they had a taste of real food!!)... it was easier to make it all in bulk and freeze it... and it was much, much better for them. Gavin ate a bowl this size at 3-4 times a day!
I will for sure be making Hope's food just as I did for her brothers.
We miss you, Gavin.
I hope you know how much we tried to make your life better... healthy... and whole.