The Story of Farm Boy 1: The Boy Who Barely Grows

by brenda on January 12, 2012

This is Farm Boy 1. He’s got a growing problem. He’s had it his entire life.

When he was born, he was 1 lb 12 oz and had to live in the hospital for 3 long months.

preemie

When he was 1, he was still pretty tiny in his high chair. He would eat baby food really well–and then vomit his entire meal. His vomiting was unpredictable, but often. He had severe constipation and we used suppositories on him. One doctor even told us to give him mineral oil in every bottle–which was the dumbest thing she could have said. Mineral oil would coat the gut and make nothing absorb. If he would have vomited mineral oil (he was prone to vomiting), he could have aspirated and died.

When Farm Boy 2 was born, 13 months after Farm Boy 1, there was barely a difference in size. At 1 month, Farm Boy 2 was 10 lbs. At 1 year, Farm Boy 1 was 13 lbs. He lived in 6-9 month clothes forever. He was clinically diagnosed by 2 doctors with Myotonic Dystrophy, which meant he would never walk and would need a machine to help him breathe by the time he was 10 years old. They said it was genetic and I had it too (but milder). We invited the elders from our church to our home to pray, and they anointed him with oil (the first time I’d ever seen this), and the blood test came back normal! Praise God!

Farm Boy 2 was a good eater and caught up quickly. Eventually, he was passing hand-me-downs to his big brother.

He ended up with a nasogastric feeding tube to help him grow. We would let him eat for 10 min, then start the drip feeding. We also ran it through the night. It was difficult figuring out how much to give him, because he vomited easily, and then the tube would come out, too. We learned that our nearest ER did not have anyone trained in placing an NG tube back in–The Farmer and I had to get trained. I would wrap him up in a blanket and hold him tight while The Farmer very carefully stuck the tube down his nose, praying that it didn’t accidently slip into his lungs. I woke up a lot during the night when he was getting drip feedings. What if it accidently went into his lungs? What if the tube strangled him? Oh the restless nights of a worried mom!

He was in the hospital A LOT. He had tons of blood work done as well as barium studies. During the year 2004 (between the ages of 2 and 3), he had 27 visits to his doctor’s office, plus hospital visits, plus visits to a GI specialist (not included in those 27 visits), plus at least that many phone consultations with dietitians. Nobody could figure out why he wasn’t growing.

He didn’t have much of an appetite. He had texture issues & would only eat the edges of a chicken nugget, not the insides. He would not eat yogurt, pudding, a pbj, or anything wet or sticky. He would rather feed his food to his toys than eat it himself.

He often looked nauseous at meal time. Like he just didn’t feel up to eating.

When we adopted Farm Boy 3, who was 2 years younger than Farm Boy 1, there wasn’t much of a difference in size between the two boys.

He ended up getting a G-Tube (Gastrointestinal Feeding Tube) via surgery. The NG-Tube had made him vomit so often that he only gained 3 lbs the entire year that he had it. His weight went up and down constantly that year. Before having a feeding tube, he was gaining 2 lbs per year. All that work for only 1 more pound than he would have gained without the tube!

We gave him tube feedings wherever we were.

He got “bolus” feedings daily, and drip feedings at night.

The first year he had the G-tube, he gained 8 lbs–a quicker gain than he’d had since he stopped drinking breast milk. But he wasn’t eating well. He still looked nauseous during meals and didn’t want to eat. He was still vomiting a lot. He still had acid reflux and severe constipation.

We discovered that his favorite food was pizza. August 2006 (almost 5 years old) he ate an entire piece of pizza for the first time in his life. For the next several months, we had pizza once a week to try to duplicate the success.

He still had his G-tube (taking in the corn-syrup + soy based high calorie formula), and he got his first ear infection and had to go on a round of antibiotics. That year his vomiting increased even more. He only gained 2 lbs that year, even with the highest calorie formula they make PLUS calorie boosters added. (Say it with me, THIS BOY HAD GAPS!)

When he was little, he went to several feeding clinic and speech & feeding therapy appointments. They encouraged us to do “food play” with him. He drove cars in pudding and stacked blocks in yogurt. It challenged my sensory issues 😉 but it seemed to help him with his aversion to sticky things..sort of. 😉

He still had to have lots of doctors appointments and testing, etc. How bad was his acid reflux? Was it damaging his esophagus? Why was he still not growing well? Why was he so constipated?

They had us wean down his feedings with the tube and eventually remove it. He was growing steadily, at, still, 2 lbs per year. They said that was “good enough” and since he maintained the same amount of gain with or without the added formula, we might as well stop the feedings.

One day he started crying about the kids on his soccer team being bigger than him. He cried “I eat so much but I don’t grow. Why? I want to grow.” Out of desperation (and since the medical doctors had given us zero answers to help our boy grow), we decided to try going gluten free. We were still eating sugar, and potatoes, and rice, but gluten free helped him a little. His acid reflux seemed to go away! He still struggled with constipation and had slow weight gain.

After 1 year eating gluten free, I read about GAPS and we switched over right away. We did not do the intro because he was opposed to soups. At a weight gain of 2 lbs per year (or 3 lbs when we were GF), he really couldn’t afford to not eat a meal and lose weight.

The first year we were on GAPS he gained 7 lbs. The second year, he gained 3 lbs–and then lost 3 lbs–and then gained 6 lbs (for a total gain of 6 lbs over the year–STILL better than before we changed our diet!!). His doctor saw him at the 3 lb loss mark and was concerned. So were we. What’s the deal with this boy’s weight??

We’re pretty sure we figured it out last week when he was sitting at the table with his glass of milk, looking nauseous again.

When we went on GAPS, he stopped drinking milk. Some might say, but wait! He won’t gain weight if he doesn’t drink MILK! Wrong. He gained 7 lbs. That was the most he’d ever gained from FOOD in his entire life. He was eating seconds, thirds, and fourths at most meals. We were criticized that we should feed him some starches, because he was obviously SO very hungry…But he actually had an appetite for the first time in his LIFE, and he grew–and he had no more constipation or acid reflux, and he didn’t vomit, and he didn’t look nauseous, and his energy level increased. He also went from 27 doctor visits per year for various illnesses to ONE.

Fast forward…Over the last year, we re-introduced raw milk. We started giving EXTRA to him for weight gain. We also bought store bought yogurt for several months (after we took in our foster kids and our days were so very full). Store bought yogurt is not cultured long enough and it still contains lactose. Guess who’s appetite went DOWN? Oh goodness! He also started getting itchy, all.the.time., which means his body has some serious detoxing to do…

Flus and colds increased in our home over the year (we had none the year before). He had a pretty serious bout of the flu (which did not help with his weight gain), as well. After that he began eating like a bird again–picking teeny tiny bits of food, sitting at the table forever. He started waking up weak & shaky, with barely enough energy to get dressed–the same way I remember feeling as a kid and all through high school.

 

He is now 10 years old, and he’s had some more testing done. Nothing is wrong, according to his blood work. We wondered about his liver since one test was a little elevated–but in the context of all of the other tests, he’s fine. We wondered about growth hormones, because one test was off–but after a thorough explanation about growth hormones from his endocrinologist, we know that the test that was off simply showed that he wasn’t gaining weight well…which we knew. We found out that his “bone age” is between 8 and 9 years old–and he is 10. That is good. That just means he’ll start growing taller a year or two after his peers. Oh well. No biggie, right? (So glad we homeschool, so that he won’t get teased!).

His endocrinologist predicted that he will be between 5’6″ and 5’9″…if he starts gaining weight a little quicker…He set a goal for Farm Boy 1 to gain 5 lbs in the next 6 months. The last time he grew that quickly, he was drinking breast milk. Since that isn’t an option these days, 😉 I am busy learning about high calorie GAPS foods.

He is SO textbook GAPS!!! A bout of vomiting makes him even more sensitive to milk–GO FIGURE. His “good bacteria” got wiped out and until the population is fully restored in his gut, he won’t be able to process milk. Well, duh! I wish I would have thought that through before. A bout of the flu = back to stage 1 GAPS, at least for a little while. Re-build the gut. Lots of probiotics. NO UNCULTURED MILK!

I did not have him on a regular probiotic before this week. Now he’s getting 1 full Bio-Kult in 1/2 cup of 24-hour, whole milk, drained yogurt (higher fat) plus 2 TB sour cream and 2 TB honey every day. I went shopping for him today and got him a smoked turkey leg (no nitrates). He loves meat “on the bone,” and it’s a whopping 417 calorie snack! I’m not typically a calorie counter, but we’re counting calories to get him to gain weight these days. I’ll share more on this subject. I’ve got a list of high calorie GAPS foods to share with all of you, in case someone in your family is in the same boat. I will share his progress here. I have hope that he is going to grow WELL over the next year! 🙂

 

{ 16 comments… read them below or add one }

momnivore's dilemma January 12, 2012 at 9:45 pm

Thank you for sharing this. As I was reading it before you said you did GAPS…I was about to mention GAPS, or at least GF. We have a son with ASD, and in that community, many with the failure to thrive has had success with raw camel milk. It’s way $$ than raw cow or goat, but I figure it was worth mentioning. God bless your family.

I saw a great quote the other day, that is fitting to both of our situations:

“People are fed by the food industry that pays no attention to health, and treated by the health industry that pays no attention to food.” -Wendell Berry

The more of our kids that struggle with various medical and developmental special needs, the more we move away from the “food industry”…

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Anonymous January 12, 2012 at 9:57 pm

I am, I am!! I am very much in that boat!

Oh, Brenda… what an ordeal you’ve had to go through with your son’s health! My heart just broke for him reading it… I was also one of those children that “wouldn’t grow” and the doctors couldn’t figure out why. But now I know it when I see it, just like you said — textbook GAPS!

Your son’s story played a big part in my decision to go on GAPS. I kept hearing about weight loss, weight loss, weight loss… but when I saw that both you AND your son were on the diet, and you lost weight, but your son GAINED, I was sold on the fact that GAPS *heals.* If you need to gain, it will help. Thank you for inspiring me!

I’m not sure I’m totally sold on the calorie thing though — because take foods with lots of saturated fats, (like, oh I dunno, butter? hehe) for example. Super high calorie, but made of mostly short-and-medium-chain fatty acids that are used for quick energy, not stored in the body as adipose tissue. I easily go through a pound a week of the stuff, and still am not gaining on a typical traditional foods diet. I do think it’s important to track what you’re eating to make sure you’re getting enough food, and carbs especially, when you’re on a restrictive diet like GAPS.

But, I’m still very interested to see your list of high-cal, weight-gaining foods! Since obviously, what you’re doing to nourish your son is working. I’m hopeful I can make good progress like he did!
~Emily

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Jackie McMillan March 11, 2012 at 6:08 pm

Hi ButterBeliever,
I’m on GAPS (Asperger’s), and I find that fats are not easily broken down, never mind assimilated, unless I eat them with lacto-fermented foods. Without the pickles, they just seem to pass right through. I craved fats as a child, and occasionally still do (it’s a warning sign, now). Back then, I would eat the skin off an entire chicken, the pat of butter out of the dish, and the rind off the ham when I could get away with it, and all at once. I’m still pretty bony, even in my later 40s, but the lacto-fermented pickles make all the difference. Best Wishes, Jackie (www.ThriveWithAutism.ca)

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Rebecca January 12, 2012 at 10:09 pm

way to go, mom–you’re doing a great job!!!!

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Mommysince99 January 12, 2012 at 10:10 pm

Sounds like my little girl who finally started to grow but her teeth have suffered…food=pain for here and it wasn’t until she was 5 that we started testing her for allergies…we came up with eggs, dairy, chicken and wheat. the common thread? They are all altered. we went organic and gluten free. within a month, she grew and inch and a half. She is tiny for her age and physically developmentally behind. At her tallest she is predicted to be 4’6. She is 8 now and looks like she is 5 1/2. She is just now losing her baby teeth and they have very little enamel on them but we caught the allergies before her permanent teeth formed (yay)

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Anonymous January 12, 2012 at 10:57 pm

What a brave little guy and what a fantastic smile!

Our daughter Kodiak has had similar issues (although not nearly as severe). She was born tiny and has just always stayed that way. We’ve been on GAPS for a year now and she’s still not growing, but her appetite and her enjoyment of food has improved immensely! You can read about it here: http://theliberatedkitchenpdx.com/challenges/picky-eaters/. We started slipping a little on including bone broth and fermented foods over the last couple months, so her pickiness started creeping in. We went back to eating soup for a week, taking a probiotic, and eating more ferments. We think it’s helped? I hope it has.

Before starting GAPS, she had to have a lot of dental work done. It seemed like she needed something major done after every visit. Cavities, a crown, and extractions when the baby teeth roots didn’t dissolve. At her last cleaning, she had several “watch spots”. Six months later and they’re still just “watch spots”! No cavities! It is such a relief to get some tangible results that we’re doing something right, even when it seems futile.

We wish you the best over the next year!

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Lori @ Laurel of Leaves January 13, 2012 at 9:01 am

Wow-Brenda, I can’t even imagine all that you guys have been through. But praise the LORD for nutritional and supernatural healing!! I’m praying for even more of both for your boys in the years to come!

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Sandy January 13, 2012 at 4:32 pm

Thank you for sharing your story! From this and the rest of your site, you sound like a GREAT MOM! May Farm Boy 1 continue to do well with the GAPS diet. God bless you and your lovely family. : )

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Polkadotmommy January 13, 2012 at 6:02 pm

Wow, what a journey! So glad to hear you are figuring things out! My 9yo girl is allergic to casein/dairy… we’ve been slacking off and let her have some here and there… before we knew it, she was eating several servings a day of milk, cheese, and yogurt. She had the itchies EVERY.SINGLE.NIGHT. I didn’t put the two together until I read this! Anyway, she’s back off the dairy… and I have a fresh batch of kefir and another of kombucha brewing. We will go back to a our daily kefir smoothies… that’s a great high calorie/high fat option. I use whole milk kefir (24-48hrs), a couple handfuls of raw spinach, frozen fruit and sometimes a dash of raw honey if it’s a little too tart. The kids love it and actually prefer it with the spinach! My boy won’t eat butter, cheese, most anything creamy/custard… essentially anything with good fat in it! I can get coconut milk in him (good source of medium chain fatty acids) but he only wants the chocolate kind (which also has sugar). Homemade “nutella” is a great idea as well… with hazelnuts, cocoa, & honey (or almonds or sunflower seeds)… not sure if nuts are GAPS legal? Hardboiled eggs & deviled eggs make great snacks. Fruits and Veggies with dips like nut butter, homemade kefir “ranch” dip…

Our biggest struggle might be correlating our 9yo boys need to gain weight with the rest of the families need to maintain or even shed a few pounds. It’s hard to sneak all the extra calories in for one when everyone else wants them also!

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Jackie McMillan March 11, 2012 at 5:58 pm

Hi Polkadotmommy,
For an awesome home-made chocolate coconut milk, try getting King coconuts (usually a dollar or two a piece at an asian or african food store up here in Ontario, Canada). Pick the heaviest, that sound like they’re most full of liquid (listen for the slosh). Whack the top off with a cleaver in a large, shallow metal bowl, and strain the liquid through a cloth in case there are any shell shards. Scoop any white “meat” starting to form on the inside of the shell into a blender with the coconut water, add about 1/2 – 1 tsp of cinnamon, 1/8 tsp of cardamom, and 2 tsp. of organic raw cacao. Blend until creamy. Gradually add honey to taste. A pinch of good chilli pepper can also be nice, but I don’t do it often as, like many in the autistic spectrum, I react badly to the nightshade family plants (tomatoes, potatoes, eggplants, peppers, ground cherries). Hope your family enjoys this as much as I do.
And re. helping the rest of the family not gain weight, try making a lot of marinated vegetable salads with lacto-fermented pickles mixed in. Help everyone be aware that if they’re healthy, the vegetables should cover at least 2/3 of their plates. If they’re not, protein and fat requirements are higher. When the veg are really yummy, this is not a hardship! Best wishes, Jackie (www.ThriveWithAutism.ca)

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Alex Sinclair February 22, 2012 at 8:19 am

Your kid may have a dairy allergy or severe wheat intolerance. And while dairy allergy can be detected through an allergy test, wheat intolerance cannot — although allergy tests still “test” for it, which is just ritual and pure stupidity. The truth about wheat intolerance is that it only activates its “allergy” in the digestive tract, once actually eaten — so the only way you’d know it’s causing problems is to actually eat it.

Try your kid on Mercola’s Pure Power Plus whey milk protein. Yes, I know it says “milk” in there, but it’s a form of milk called A2 which is not reactive like normal milk. Also, it’s loaded with leucine, which is highly important. Good luck.

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Liliana Verd February 24, 2012 at 12:36 pm

Thank you for your stories!!! I don’t know how you manage the time to write this blog but I am grateful. My kids and I do not have serious immune issues, but I can see my oldest son gut imbalance with plain eyes. He only wants breads,… and the sort. He suffers from cough every single winter and his mood is very fragile (I don’t know how else to describe it). I really want to get everybody on the GAPS diet but since our issues are minimal and he goes to school and school lunch 3 days a week I have a very hard time. I also hate fighting so much with him about food. That is why I find your story very helpful. If you could do it with so much against, I should be able to. Thanks again and wishing you and your family of farmers the best health!!!

Liliana Verd

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Melissa March 7, 2012 at 11:59 am

I would be curious to know your doctors reaction. Our son also has lower growth but also adhd and stimulant meds slow growth! We’ve gone paleo and had succuss but without doctor or family acceptance. I choose to believe that his resultant growth spurt was not a coincidence.

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Jackie McMillan March 11, 2012 at 5:40 pm

I’m 46 and have been gradually building up the recipes, the access to organic foods, and the will-power to do GAPS full-time (I have Asperger’s). When I need to gain weight, I find fats eaten with lacto-fermented vegetables (i.e. dilly-beans, or sauerkraut) are both much better absorbed, and much less likely to upset digestion or derail my gallbladder (ie when feces look chalky). I also like to soak nuts and fruit together overnight to make a breakfast smoothie with yoghurt, a little fish oil, vanilla (to soften the fish oil), maca (to help the endocrine system), a tiny bit of bee pollen (I know, it’s off the list, but it feels good in my body), and often some powdered acai for the phytonutrients and vitamin C. I also do Greens plus first thing, so even if my digestion isn’t optimal, I’m hyper-nourishing sufficiently to cover most gaps. I’m thrilled you’ve turned things around for #1, and would like to send parents who take my “Thrive With Autism” workshops to this blog posting. Would you be ok with this? Thanks, Jackie

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brenda March 14, 2012 at 9:01 pm

Jackie, Sure, that would be great! Thanks for the comment. I’m glad that you’re finding good recipes, etc. and that you plan to do GAPS! Good luck to you! 🙂

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Bfly1234 May 6, 2012 at 5:01 pm

Thank you for sharing your story. I am a 28 year old mother of two. I am severely underweight myself. I have been thinking about doing the GAPS diet but fearful that I will lose more weight with all the restrictions. Also, I noticed in one of your posts that your dad had carcinoid syndrome and you also have high serotonin. I also had a carcinoid tumor. I wonder if i am sensitive to foods that contain it in high amounts too. Do you have any specific tips that I should take into account as I delve into this journey myself. I understand you are not a doctor etc. I am more interested in your anecdotal advice as information to consider. Thank you so much.

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