Caleb's Journey

Caleb with his adoring big sisters - January 2012

Our son Caleb was born in March of 2009. A beautiful, blue-eyed blessing that stole our hearts immediately (and those of his two big sisters!). We always commented on what a laid-back and easy-going baby he was. However, by the time he was nine months old, it became apparent that he was not hitting the major milestones in the areas of gross and fine motor skills and communication & speech. That started our family on a unique journey of learning, discovery, heartache, and celebration that continues today.

Caleb has extreme muscle weakness (hypotonia = low muscle tone). This means that though he is almost three years old, he is too weak to go from lying down to sitting up on his own. He cannot crawl or walk yet, and has yet to perfect the "pincher grasp" which is needed for picking up small items between the thumb and forefinger. He cannot chew yet, so he can only eat foods that have been pureed or are very soft. He does not have any words at this time, although he has a couple of hand signs he can do. 
Caleb doing his favorite thing...making music

In October 2011 I decided to put Caleb and I both on an elimination diet. While Caleb does not yet have a "diagnosis" at this time (not for lack of trying...we've done almost every kind of testing there is!) he does show some of the mannerisms of autism. There is a lot of research out there showing a correlation between a GFCF (Gluten-Free Casein-Free) diet and improvement in children with autism, and while Caleb does not have an official diagnosis, I felt it was something I should try in the hopes that we would see behavioral improvements and possibly developmental improvements. I eliminated gluten, wheat, yeast, dairy, eggs, corn, soy, peanuts, shellfish, sugar, and artificial sweeteners/flavors/colors from his diet. I fed him a mostly plant-based diet with lean meats. 

Within about three weeks, Caleb already seemed like a happier kid. He had struggled from birth with terrible constipation, and even when he wasn't constipated he often seemed like he was in pain (and I wasn't sure why, but suspected intestinal issues). Eliminating the most common allergens from his diet (which I was doing for myself at the same time) seemed to bring him out of a fog. Suddenly, we realized we were seeing the best version of Caleb on a daily basis, rather than only catching glimpses of that Caleb on occasion. He was happier than I had ever seen him in his life. His appetite grew (and he grew!) and his pain lessened. His constipation was less of an issue. 

At the same time, he began making advances developmentally at a rate that was faster than we'd ever seen. He grew by leaps and bounds in the areas of fine motor skills and sensory therapy. He grew exponentially in his communication skills and began to do things like drink out of a straw...something that comes so naturally for typical kids, but it was huge for Caleb. And then, he became more physically independent; not crawling, yet - but he figured out how to scoot on his bottom and use his arms to help propel himself forward. This made for an even happier little boy. 
Caleb's first time drinking out of a straw! Yay for Jamba Juice!

Over the last couple of months, I've allowed some sugar to creep back into his diet, and I've seen a change for the negative in him. More autistic-type mannerisms, more in a fog. I've just cut him off from sugar officially - again - indefinitely. I am currently researching diet options and bio-medical treatments, as we are nearing the end of the traditional diagnosing and treatment methods that our HMO offers. I have met with a lot of resistance in trying to get him tested for allergies through our HMO, so I'll be headed to a naturopath soon. 

It is emotionally draining and time-consuming to do the research and testing required. It is hard work to learn a whole new way of cooking and eating. This journey is not a sprint...it's a marathon. But when it's your child...you find strength inside that you didn't know you had. God knew what he was doing when he made mothers! 

Throughout this process, I am feeling empowered. With God's help, I'm learning that I CAN do this. I can make a difference in his development. I can do more than just sit back, at the mercy of my HMO, feeling helpless. By simply changing Caleb's diet, to start with, I can affect my son's future. I can affect my whole family's future! 

12 comments:

  1. Wow Courtney, very interesting process and journey you are on. Your son is truly blessed to have you as a mother and seems to be benefiting immensely from your perseverance. I've started on a similar journey recently with my own diet as I've experienced unexplainable health issues, particularly relating to fatigue. While I haven't eliminated all the foods you described, I've personally benefited a lot from cutting out sugar, wheat, yeast and dairy. And when I go any length of time without diligently watching my intake of these things, I immediately notice the difference. It definitely requires vigilance and diligence (especially in eliminating sugar – it’s in everything!) but it's worth it. I know that learning to cook differently can certainly be one of the most challenging aspects. I'm sure you've found a vast resource of recipes and options available to you but if you're interested, perhaps one of these days I can send some of my favorite recipes your way to add to your repertoire. I'm very much looking forward to hearing how things continue to progress with your son!

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    1. Anna...it's wonderful to hear from you! And amen to the sugar thing. Yikes. It is so addicting and yet has so many terrible side effects...and it's so pervasive in our food culture today. And I am always interested in new recipes, so send some my way! Thanks for your comment. :-) Hugs!

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  2. BRAVO sister!!! Oh, we could chat eachothers' ears off. If you EVER want to call, just email me at lexieskitchen [at] gmail.com and we can set it up. I would love to hear what has worked for you and share the biomed treatments we've tried so far. Miles is doing great ... improving everyday :) Keep up the fight. You are a super hero mamma!! xoLexie

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    1. Thank you Lexie! You are a sweetheart and I can't wait to pick your brain. I just emailed you!

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  3. Wow Courtney! That is awesome!! I can't imagine the work you are putting into his diet everyday, but I think it must be amazing to see the results reflected in his behavior! I always try to remind my patients of how far they've come because it can be so depressing otherwise. You are right- it is a marathon, and you have us cheering you on! I applaud you for doing what you can to make his life the best it can be. Your efforts are not in vain! And you keep on pushing your insurance and pediatrician if you think there are things that should be done and aren't. You're mama, and I believe the Lord has given us a 6th sense when it comes to our kiddos. : ) ~Rachel (Hill) Boggs

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    1. Thank you Rachel! You are right...sometimes it is good to reflect on how far we've come...that's an encouraging thought! 6-12 months ago I never would have imagined being able to tackle everything I've tackled up to this point. (Thank You Lord!) Thanks for the encouragement! :-)

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  4. Courtney, Hello! And GOOD FOR YOU! Sometimes we have to take our babies' health into our own hands...but it is so hard! We get tired, discouraged, and second guess ourselves. You. Can. Do. It! We've been on a journey for nearly 6 years with our oldest, and nearly 2 years with our youngest. So many days find me in tears, especially at dinner time with all of the dietary restrictions! However, they DO make a difference. And gobs of probiotics are miracle workers.

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    1. Mols - Hello! And thank you for your encouragement! I was in need of some today, and you are part of that. It's so nice to know we are not alone. AND nice to meet you!! :-)

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  5. Hi. Have you ever looked into the Gaps diet? Not that you aren't doing amazing already, but the Gaps diet is supposed to actually *heal* the problems in the gut that can lead to autism and development delay. It may not be right for you, but it may just be worth looking into. I will say though that googling it will not give you near the detail of information that is in her book, and the book is a wealth of knowledge even if you decide the diet is not for you or your son. Totally worth the money. I was very skeptical and reluctant to try the diet until I actually ordered and read the book. Now my son is on the Gaps diet and has shown much improvement in behavior and food tolerances (though he's not autistic, he has had some minor developmental delays and severe food intolerances). Natasha Campbell-McBride, Gut and Psychology Syndrome. Good luck and good job for taking such good care of yourself and your children!!

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    1. Hi Anonymous,
      I have heard of the Gaps diet, but have never really been able to figure out what it entails. I'm glad you gave me the name of the book and the author, because you're right, I haven't been able to get a whole lot of detail just from googling. I am more than willing to try it. I will see if I can find a copy of the book through my library. Also, we are seeing an autism specialist this week so I am hoping to get some advice from him as well. Thanks so much for sharing your experience! I will look into it some more!

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  6. You are an amazing woman! I know God will continue to guide you and give you strength through this process. One book you may want to read is, "Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies" by, Kenneth Bock. This book literally saved my daughters life! I worked with a biomedical doctor and we basically did exactly what the book recommended. Within 3 month of treatment, my sweet 1 year old was finally starting to heal (she suffered wtih SEVERE eczema which was caused by a systemic yeast infection & multiple food allergies...wheat, dairy, soy, tree nuts, peanuts & sesame). According to the author of the book, all 4 disorders (Autism, ADHD, Asthma, and Allergies)have the same underlying cause. It is a great book and hopefully it will have some helpful information for you :)
    Good luck and God Bless!
    Kristen

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    1. Hi Kristen, I'm sorry I'm so late to respond to your lovely comment. Hey, three months later...I suppose it could be worse? Anyway, I have heard of that book and completely believe it...I've read many other testimonials like yours! What I really need to do is write an update as to where we are at with Caleb's diet and how he is doing now. Amazing things are happening! Thank you, Kristen, for your encouragement!

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Thank you SO much for your comment! Have a fabulous day! :-)