This is a guest post from Kate, mom to Gavin, the cutie pie you see here. Kate keeps a journal over at CaringBridge. I love her spirit and sense of humor! I was intrigued by the dietary changes she made with Gavin, who has cerebral palsy, so I asked her to share her experiences. The advice she got seems like it applies to any kid, special needs or not, though you should check with your pediatrician before you try anything. FYI, the doctor she mentions here is willing to answer questions, so ask away and I'll run the doctor's answers in the near future.
I’ve been a daily reader of To the Max for several months now and love following the adventures of the amazing Ellen and her inspiring family. I was so flattered when she asked me to guest blog about Gavin’s diet and the extraordinary progress he has made.
Our son, Gavin, is 17 months old. When we got the diagnosis of cerebral palsy a week before his 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. I think a lot of focus is put on the physical therapy aspect of treating CP, which I don’t always understand. The damage is in his brain, not his legs or his arms or his trunk. I wanted to find a way to somehow start the healing process in his brain. I searched and searched the Internet, or as I like to say, attended “Google University.”
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, but I found a common thread between the two: Both had a doctor working for them at the time named Coralee Thompson, M.D., who specializes in treating brain injured children through nutrition. One day, I sent her an e-mail; she wrote back and let us do a phone consultation with her, for a fee. 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." Dr. Thompson has a book due out soon, Healthy Brains, Healthy Children.
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've made:
• We've eliminated all dairy products, except for butter, to help with reflux.
• We give him a half teaspoon of cod liver oil once a day. The fatty acid found in fish oil, DHA, is critical for brain and eye development.
• We feed him protein at every meal—chicken, lentils or salmon.
• We minimize starches and we don’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 give Gavin six types of vegetables daily, which I accomplish by making a vegetable stew. Every stew is different! His most recent stew has celery, leeks, carrots, parsnips, spinach, scallions and peas. Believe it or not, they’re delicious and combine well with anything.
• We add 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 do to boost his caloric intake is adding two teaspoons of agave nectar to foods. It’s mostly fructose and doesn't need digesting.
About a month after I made all these changes, Gavin had weaned off one medication completely. He is still on two, but the dosages are dramatically reduced. We rarely see him suffering from reflux symptoms at all these days. His bowel movements, which can be an issue with kids who have CP, are normal.
About a month after we changed his diet, I also started having a craniosacral therapist work on Gavin once a week. I started the diet four months ago and the craniosacral therapist three months ago. I believe these two things combined have given us amazing results (here's a video of Gavin). 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 are nothing short of a miracle…and the progress continues every single day.
Oh my goodness. I am SO excited reading this post!! Wow! I went to The Institutes from the age of about 3-6. This was back in the 80's. My parents had me following the program at the Institutes for almost four years. That is how I got where I am today. The program is amazing! It was hard work for my family, but the results have obviously been worth it and helped me to be as independent as I am now.
ReplyDeleteI also did craniosacral therapy for years. And it was after a session one day, that I began walking. I was six years old, and I actually remember the day and the feeling. All the sudden I had balance.
Finally, my parents were very careful with diet as well. One thing my mom was very diligent about, was not giving me any sugar. I don't know if that had any effect on the CP, and it didn't last forever, but it just came to my mind while reading about the diet.
Well, I really admire what you have done for your son and it sounds like you have gotten wonderful results so far. Good luck Kate, I loved reading your post!
~Marianne
Hi Marianne,
DeleteI am interested to find out more about your experience when enrolled with the Institute. My son has some form of brain injury that has impacted his sight, mobility and speech. How did you implement the Institute's suggestions? Did you actually live at the Institute in the US, Pensylvania I think. I am about to take him of diary and wheat and will also seperate his intake of starch/ Carbs from protein. It sounds like that helps too. I have always given him Omega 3 and 6 supplements.
Thanks for sharing. My son is 4 now and looking back, diet was one of the key issues that I dealt with for the first 2 years of his life. Early on, he had very sluggish digestion, was often constipated, would wake in the night with pain, could not pass wind etc.
ReplyDeleteWhen we was around a year of age (before he had his CP diagnosis), I made some radical dietary changes to both his and my diet (he was still breastfeeding). We withdrew all wheat, dairy and soy and limited his sugar intake. We also added flaxseed oil to all his meals. We immediately noted improvements. By the time he was 2, he rarely had problems with his digestion and was generally much happier.
Now that he's 4, he can tolerate wheat and dairy every now and then - which is great for when we go out, have parties etc but I still consider balancing his diet as a very important part of his therapy.
Thanks for sharing your experiences with your gorgeous son!
I will check out your blog and keep up dated about how he's going ;-).
That is a huge amount of progress. Way to go Gavin.
ReplyDeleteI honestly didn't realize diet could be so affective. I have a child with severe special needs who has behaviour problems as well..and I know diet will help...but..yes..iknow..always that but.
thanks for this post
Thank you, Ellen and Kate, for this wonderful post. I also heard of The Institute when Daniel was about a year old, but we never made it there. We did, however, buy a few of the available books.
ReplyDeleteKate is absolutely right that the real issue in CP is the brain. Children with CP are born with the same limbs, bones, and muscles as children without CP. Rather, the physical impairment is a SYMPTOM of the damage to the brain. Any malformations of the body are due to the fact that the parts of the brain that typically control those parts of the body are damaged. That's why craniosacral (and Feldenkrais, which we used quite successfully with Daniel) works very well for many children with CP. Daniel's traditional therapists also have mentioned quite often the pathways that they are trying to build up in Daniel's brain. They're not only treating muscles in therapy, but they're trying to help the brain rewire.
We somehow managed to escape any feeding/reflux issues with Daniel, but his neurologist did mention to us the importance of maintaining a healthy diet in order to help fuel his mind. This is important for all of us, but even more so with children who have neurological impairment. Daniel eats a healthy diet of organic, hormone - free foods. We also make sure he has plenty of protein, fresh fruits and vegetables (broccoli with breakfast is one of Daniel's favorites), and he takes an omega 3 fish oil supplement called Coromega every morning. We don't do soda, Kool Aid, or other "chemical" foods, we avoid fast food, and it has made all of us healthier. Daniel does have the occasional cookie or piece of chocolate, but it's a rare treat. Truth be told, he'd rather have a cup of organic applesauce than the Oreos that many kids eat on a regular basis. I like to think that I would have instilled such healthy habits in him even if he didn't have CP, but I'll be honest - such things became even more important after Daniel was diagnosed.
Keep up the great work, Kate and Ellen - Gavin and Max are so lucky to have you as mothers!
We grow a lot of what we eat, and we do plenty of canning for the winter months as well and we have a decent root cellar that we keep full of goodies. If we had to we could probably survive for four or five months on what we have (it would get pretty boring though, and maybe not so balanced, either--unless I took up hunting!). We don't have any "feeding issues" in this household, except maybe we could stand to eat a little less--me, especially! We do try to eat nutritiously, and since we don't have a lot of money, we don't eat a lot of meat nor do we eat out much, but we will go to the Burger King once a month or so as a treat and we don't feel bad about it--everything in moderation, I say.
ReplyDeleteI think that anything and everything we can do to help our children is a "good thing" as Martha would say! If it includes specific foods then I say go for it!
The changes in Gavin are inspiring. His Mommy clearly is devoted to helping him and it's paying off. I'm going to start reading his CaringBridge now so I can follow his progress. I feel invested in him all of a sudden!
ReplyDeleteI do have a question for Dr. Thompson. Six vegetables a day is a lot. Are you worried that you'll bind up kids that have a difficult time with their bm's? And also, do you think that giving such things as butter and the sweet agave nectar will spoil kids to always wanting fattening and/or sweet foods when they're older?
Thanks!
Great post, Ellen.
Great post! Lisa and I do a lot of the same things with Elijah. He's on an all organic GFCF diet and has been for about 6 months. One of the reasons for this is his severe allergies to milk and eggs. Also, it seem that so many kids with that suffer brain injury, including autism, seem to benefit greatly from a GFCF diet.
ReplyDeleteWe also supplement his organic food and organic rice milk with healthy fats like DHA and olive oil every day, along with other supplements.
It's encouraging that Gavin is doing so well and also nice to see another parent doing a lot of the same things we are doing nutritionally for Elijah with their child.
Elijah has also been seeing a D.O. the past 4 months for cranial manipulation every two weeks. The prayer, nutritional support, HBOT, and cranial manipulation, along with standard therapy like PT/OT twice a week has certainly helped to maximixe Elijah's recovery.
Thanks again for the post and keep up the good work!
One of the things Dave and I have done since Max was young—at the recommendation of a top-notch pediatric neurologist—is give him Coromega, a mousse-like substance that has Omega-3s in it (said to help with brain development). It comes in orange and lemon-lime flavor, you just plop it into food. We gave Max 1/2 packet when he was young, a full packet now. Site is coromega.com, you can also get it at drugstore.com and lots of other places.
ReplyDeleteRegarding the questions about agave and butter. While I'm very cautious about giving kids a sweet tooth, I chose agave for Gavin to boost his interest in food and use something that is very low in glycemic index. This means how fast a food makes blood sugar. Straight glucose is 100. White bread is in the 90s. Corn flakes have a GI of 120. Some baby cereals have GI of even greater. Agave has a GI of 11. Consider a bagel that has the equivalent of 8 teaspoons of glucose in it. Gavin prefers to eat his stew than his infant formula. I'm not worried that he'll become a sugar addict at all.
ReplyDeleteWhen you remove the water content of the brain, the rest of the tissue is more than 60 percent FAT. So if you want to help brain function, eat healthy fats. About 50% of the daily fat should be from monounsaturated fats like olive oil, almonds, and other nuts. The rest of the fat should be from about equal amounts of saturated fats, fish oils, and omega 6 fats. Butter actually has high arachidonic acid, an essential fat for the brain. In general, kids need about 35 to 40 percent of their calories from healthy fat. Organic unsalted sweet cream butter is the highest quality butter. Coconut oil is a saturated fat that has important fats for energy and the immune system.
Without writing my entire book here, I'll add that it should be available in a few months through Amazon. Co-authored with Phil Maffetone. Look for "Healthy Brains, Healthy Children" by the end of April.
I'm so excited about this post! Way to go!
ReplyDeleteI've got a seat at the Institutes next lecture in April. I can hardly wait!
Here's a question though... Our daughter has short bowel syndrome and is fed through a g-tube. Currently she is barely eating by mouth. Our nutritionist isn't the most proactive and feels Caleigh needs to stay on Peptamen JR (an elemental all in one formula) I'm willing to do a blended diet because I know it will be better in the long run. I just don't know how to get started. How do you accurately count calories when doing things suck as the stew?
Obviously, we are a difficult case. My head is spinning with options.
Great Post and I'm so excited with Gavin's progress!
Great going Gavin & family! Sounds like a well oiled machine over there. It's amazing what becomes our normal isn't it?
ReplyDeleteMy daughter, Amelia is G-tube fed on Nutren Jr. Working with a non-traditional nutritionist we have put Amelia on more than several supplements: Fish Oil, Piracitam, Dry E, Phosphatidylserine, L-Carnitine, Biotin, B-Complex, Orac Greens and Super C. We had her on CoQ10 but it upset her stomach so badly, I've never weened her back onto it.
I noticed differences with Amelia when we started this regime -- particularly her strength with the L-Carnitine. It's hard to say if any one thing has actually made a big difference -- but she has made so many improvements I'm not going to take her off the supplements to find out.
Quick question, Ellen - do you know if the lemon lime flavor is sold in stores? Daniel likes the orange kind just fine, but the problem is that I hate it. We follow the same dietary "rules" as he does, so that it's a family lifestyle choice instead of singling him out. But as hard as I try, I really can't stand the orange kind. I must be picky, as every child who takes it (and my husband) says it tastes like candy! Oh well.
ReplyDeleteNo you probably have DIFFERENT taste buds.
DeleteI think a lot about what can we add or remove in Elizabeth's diet to improve her health.
ReplyDeleteElizabeth has horrible reflux and difficulties with textures. We changed her to soy and the vomiting is minimal now. What recommendations are there for kids who will not eat stew (the texture thing) and cannot chew a lot harder foods. I do try to sneak in as many blended veggies as I can to foods I bake. Is wheat okay to give? Is there something better than soy milk, I did a trial of flax oil with her milk but that led to loose bm's. Are there good fruits as well or are veggies the best?
So many questions? Kate way to go your son is thriving.
Johanna: We have only ever bought the orange kind of Coromega, and I always buy it online. Check the store locator to see if any places near you have it (and you can call to see if they have the lemon-lime flavor--let me know how it tastes)! http://www.coromega.com/index3.html
ReplyDeleteGreat post! Very interesting. I'll definitely be checking out the book and sharing this post with some other families.
ReplyDeleteI love this idea and the benefits behind the diet. However, I'm guessing this would be a challenge for tube fed and orally defensive kids like Logan. Bummer...
ReplyDeleteGreat questions out there. Food is the only thing the brain has to function, grow, and repair. So "treats" should still be brain food. Recent research indicates that even one bad meal DOES effect the expression of our genes. So being hard nosed about nutrition does make a difference.
ReplyDeleteSome tips for tube fed kids from my book draft:
Tube feeding
Many severely brain injured children require tube feeding but this does not mean they require special formulas designed for tube feeding. These special liquid formulas largely consist of casein or soy isolated proteins, vegetable oils such as soy or corn oil, and maltodextrin or corn syrup solids. Synthetic vitamins and minerals are added to replace what is not there in the form of real food. Not only are these ingredients highly processed and allergenic, they lack all the benefits of consuming plant foods. All of our tube-fed patients are fed liquefied real food! Almost any combination of food can be cooked and blended smooth enough to pass through gastric tubes and even small nasogastric tubes. If your child has a J-tube, the liquefied whole foods may need a little more special handling; avoid starches, slow cook meats and vegetables, strain through a small mesh to eliminate fiber that could clog the tube, and add plant based digestive enzymes to the food about 30 minutes before the feeding. J-tube feeding must be given more slowly and continuously (via a pump system) in some children.
The benefits of giving liquefied whole foods cannot be matched by any commercial enteric formula. You’ll need a very good blender, a little more food preparation and feeding time to accomplish this very important way of feeding your child. Experiment with different combinations of food and texture. One parent learned that by freezing her child’s stew after the first blending and blending it a second time after it thawed created a much smoother liquid. Even raw salads can be blended finely enough to pass through most tubes. Give the meals slowly, no faster than 300 ml per hour. The time between meals should not be longer than three to four hours except during the night when feeding is typically not needed. Some children will need to be tube fed every two hours. Even though you will be blending all meals, you can still adhere to all the same guidelines for excellent nutrition as described throughout this book.
Here is a one day example of tube feeding for a child weighing 22 lbs or 10 kg needing about 1000 to 1200 calories per day:
Slow cooked stew that is divided into 4 or 5 meals:
Organic beef, chicken, turkey, pork or wild fish—8 ounces or 250 grams
Mix of oil: extra virgin olive (2 tablespoons or 30 ml), coconut oil (1 tablespoon or 15 ml)
Mix of vegetables: zucchini, carrots, parsnips, green beans, spinach or kale, onions, parsley—1 pound or 500 grams
Honey or agave syrup—2 tablespoons or 30 ml
Sea Salt—1/2 tsp, turmeric, ginger, garlic, sage, oregano, etc—1/2 tsp of mixed spices
Fresh fruit blended with 1 tablespoon of nut butter or avocado, given between stew meals—8 ounces or 250 grams divided into 2 “snacks”
During tube fed meals, allow your child to smell the food before the feeding. Also, place very small amounts of food in the mouth for tasting. Both of these approaches can help enhance digestion and lead to oral feeding in the future. Include various spices and a variety of foods at different temperatures which help stimulate oral receptors. Because normal digestion begins in the mouth, oral stimulation during tube feeding helps chemical digestion and promotes other important mechanical aspects of digestion.
For children with oral sensitivities from my book draft:
Many children develop such strong food preferences that they refuse to eat anything but a small number of foods. Most often, these foods only include highly processed starches and cow milk products leaving the child very poorly nourished. To solve this nutritional problem may require a combination of approaches. The first solution is a philosophical one: You are the parent, you buy the food, and you decide the nutrition of the home. If you offer only healthy foods, your child will eventually eat something. If healthy choices are the only option, then when your child does eat, well, it will be healthy! Oral stimulation can be very helpful for the child with oral aversions. Begin by brushing the teeth with only water many times a day—10 or more. If this has not helped resolve the problem within a couple of weeks, then add very small tastes of food on the tooth brush for the oral stimulation. Do this with firm love and consistency. You won’t need to continue the oral stimulation for more than a month. Furthermore, your child may not smell properly. Stimulating the sense of smell may be a powerful brain therapy and help overcome oral stimulation. This is easily accomplished by having your child smell a variety of natural pleasant and unpleasant smells. Caution: do not use perfumes, cleaning chemicals, or ammonia.
I would be willing to consider a few private consultations from those who are serious about using nutrition as the most critical foundation for helping improve brain function and health.
I'm still breast feeding my son, should I follow the same diet as he does, ie, not dairy, etc. as mentioned in the list? I've been trying to keep track of what is causing my son's reflux as it seems more centered around certain foods since he's started on solids at 6 months. He is now 10 months.
ReplyDeleteHi Kara,
ReplyDeleteI lived in Maadi from 92-94! My second son was only 5 weeks old at the time. The lead toxicity is very bad there, so keep the dust cleaned up as much as possible and use air filters in the home. Have your son checked for his blood lead levels.
That was a side bar to your question.
Yes, I suggest that you go dairy and wheat free. See how this goes and keep a food diary for both of you to see if there is a trend of increased reflux with certain foods. Also, don't mix starchy foods with protein foods. Have them in separate meals. Hope this helps.
Coralee
I know this is an older entry but I was wondering how I could get in touch with Dr. Thompson for a consult. My son is very delayed, has seizures and has a genetic duplication. I just got the results of his EEG and would love to learn more about nutrition. We have been focusing on nutrition for the last nine months. Thank you so much
ReplyDeleteSara, she consults for The Family Hope Center in Norristown, PA, I'd start by calling them: 800-888-9370, www.familyhopecenter.org
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