Thursday, October 10, 2013

All About Gavin's Nutrition...

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*


Puree Recipes:

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.


  1. Kate, you poured so much love and energy into this post; as you and Ed have done in the care of your family. There are so many wonderful tips here, that can be used by many. Thank you!

  2. Kate, I just looked up the Lifeway Kefir online and their website shows quite a few products. Would you mind telling me which one you used?

    1. Big bottles like the one in this link:

    2. We suffer with constipation issues with our son. To the point of a blockage & then emergency surgery. Can you tell me what this is or what it is that makes it work so well?? I use everything to help things flow (including a daily laxative) so any info would be truly appreciated! Thank you!

    3. Caren - I don't know exactly why it worked for Gavin - and I can't guarantee it will work as well for anyone else - but it's just a Kefir yogurt drink. Probiotics are helpful, this I know. Gavin also had a wonderful diet, which also may have contributed. Before I did Kefir, I gave him a tablespoon of Aloe Vera Water before each meal and that seemed to help a little. But nothing helped him like the Kefir. Maybe you could consult with Dr. Thompson! She might be able to help you help your son. You can message me through this blog or my FB page if you'd like her contact info. Good luck!

    4. Thank you Kate for taking your time to reply! That is so nice, I know how busy you are. I am going to look for this and figure out how I can convince him to drink it! It cant hurt!! I may reach out to speak with Dr Thompson. Its a daily (scary) struggle here.. and we saw the bad side of getting constipated. I wish you well and enjoy all your posts, pictures and updates. Beautiful family you have.

  3. Thanks so much Kate. I also left you a comment on FB thanking you for sharing all this info with us. You are appreciated!!!

  4. Such helpful info for my little guy with excema! Thanks for sharing your experiences! Gavin continues to help others. :)

  5. Thank you Kate. I plan to share this info with other parents of FTT (Failure to Thrive) children. For various reasons our kids aren't growing and gaining properly...some have serious developmental issues. We are always sharing info to try to help our kids get better. Thank you, and thank you Gavin for this valuable info.

  6. Thanks for sharing all these great tips!! I'm definitely gonna try them out on my 2 year old who is still only doing purees and milk from a bottle, with constipation and dry skin from army crawling all day. You're kids are so lucky to have you as their mommy, and we re so lucky we get to learn from your experiences.

  7. I have two boys with autism and another with short gut syndrome. I am very interested in these ideas! Thank you!

  8. I am so glad you posted this! I have a little boy with short gut syndrome and 2 with Autism spectrum disorders. Very interesting ideas! Thank you! You are a very dedicated Mommy!

  9. I am so glad you posted this! I have a little boy with short gut syndrome and 2 with Autism spectrum disorders. Very interesting ideas! Thank you! You are a very dedicated Mommy!

  10. I'm sure Gavin knows exactly how much you did to make his life better, healthy, and whole and I have faith that he still thanks you every day for all you did for him. Thank you so much for sharing your stories and the glimpses of your amazing family. You may get tired of hearing it, but you are all amazing.

  11. I have loved reading all the posts you have written...but this one by far has been so helpful! My heart breaks when I read the posts about Gavin's death and your families heartache, but all your posts have helped me in some way or another. And this post has been one of my favorites! My son is 13 and a year ago he started suffering from severe constipation, so bad we made trip after trip to ER's and gastroenterologists and he got no relief. It got worse and he started having anxiety and now depression from the pain he was in. I have tried everything I can think of and he has withdrawn from everything he used to enjoy and has lost a lot of weight. After reading your post I wonder if changing his diet would help? He is on a regimen of medication, vitamins, etc...taking 8 pills a day. I feel that I am missing something and should be doing more! I thank you for your blog and for putting your family out in public for others to learn from. God Bless!

    1. I'm so sorry to hear this, Shari! Maybe you could have a phone consult with Dr. Thompson? She is so wise and might be able to help your son so he can start enjoying his life again! You can message me through this blog or my FB page if you're interested in her contact information. Or, perhaps acupuncture, craniosacral or energy work could help - it sounds like there's a big blockage somewhere! Good luck!

  12. I love the variety of foods you used in Gavin's meals! Our daughter has a dx of spastic quad cp and I have her on an oral blended diet. I feel so much better having her eat a variety of foods versus living on pediasure. I know the nutrition drinks are needed and I am thankful we had access to it, but am even more thankful to have taken off on a blended diet. I don't make her meals in bulk, but can see where that would be so helpful versus everyday making blends. Tonight's meal was chicken and noodles with carrots and mashed potatoes and she loved it!

  13. I am sure he knows how much you loved him. You are an amazing mom, the kind other moms wish they could be (like me!). Such a good heart and kind soul. Your posts are just heartwarming and so positive. <3

  14. I am an adult with CP and have recently been diagnosed and treated for Hydrocephalus. My health and abilities have taken a major decline since and I have basically been left on my own to get my life back on track (the Australian healthcare system sucks) and I firmly believe nutrition will play a big role. Going to implement some of this and also go to Google university and see what else I can find. Thanks to you and Gavin for the info.

  15. This is a great post- thank you! You may have said this before and I missed it- was Gavin weaned from Purees at any point? Also-- we struggle with food here-- 2 working parents and (I am so picky-- I have such trouble changing my ways) and 1 on the spectrum who refuses to eat anything but yogurt and chicken nuggets.... (greaaat-ugh) Have you and Ed changed your own diet much around Brian? Thank you so much for the tips & information. The diet is definitley key. My aunt has stage 4 cancer and drastically changed her diet- eating completely healthy- packed with many many superfoods. She has responded to treatment in a way that has defied all Dr's expectations and she is convinced that it is diet.... I bet many would agree.

  16. Hi Kate, I have RA and my 1 year old has eczema (obviously nothing compared to what you and other parents are dealing with, but we both have autoimmune conditions) I have been looking into gut health for myself for about the last 2 years to treat my RA. When my daughter was born she showed signs of eczema that got worse as she got older. I've kept her on a similar diet to me; I've never introduced dairy, grains of any sort, artificial sugar, etc to her and her eczema is very minimal now. I wish more Dr's would look into gut health and nutrition when treating adults and children that show these issues. I think it's amazing given Gavin's diagnosis that you took his health and healing into your own hands and did the research. As someone who argues with her Rheumatologist on a monthly basis, I have tremendous respect for people that do the leg work themselves. Thank you for sharing your little boy. Hugs from Ohio xoxoxoxo

  17. So helpful Kate. Worth all of the time you took to write it. My son has delays and has some mild eczema. He eats up a storm, but I think that changing his diet a little might help him. I really like the idea of using the coconut oil for his skin. I am not anti-medicine, but if natural works, I would prefer to go that way. Great post. And, yes, Gavin knew how much you loved him.

  18. Thank you for posting all these ideas to improve our children's nutrition! My son has diplegic CP and has trouble with constipation. I'd like to try the kefir - where did you find it? Is it in normal grocery stores, specialty grocery stores?

  19. Thank you for this. I have so many things I'd love to discuss with you. We have mutual friends, and I hope that someday we'll meet. But for now, I'd just like to say thanks for posting this. I've gotten off course with Bobby's (my son who is so much like yours, except he has a diagnosis of a 6p deletion) nutrition lately, stuck in a rut, and this is so helpful to me. I will definitely be looking up Dr. Thompson, and giggled when you talked about stalking her as I have done the same with many other expects in fields that affect my little man. But before I stalk her... I will read her book :)


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