The past three weeks have been glorious for little man. A couple of days after my last post (Today, I feel frustrated.), James was back to his happy, fun-loving self. His functional medicine doctor asked us to increase his dose of EnteraGam, which is a medical food treatment that binds to toxic substances in the gut to prevent them from penetrating through the intestinal lining. When we started to increase his dose, he wasn’t feeling so hot, hence, my last post. But his body has now adjusted to it, and it seems to be doing its job.
We haven’t given him any broth the past few weeks since the suspect histamine issue came to light (broth is very high in histamine). He’s been eating lots of shredded chicken and steak, as long as it’s cooked in ghee. And my amazing sister brought to my attention two-ingredient pancakes, which consist of bananas and eggs. They are YUMMY. The kid is nuts over them, and he’s now regularly eating eggs. He still hasn’t touched any cooked vegetables recently, but we’ve been able to sneak some cauliflower, spaghetti squash, zucchini, and butternut squash into his smoothies regularly. Thank God for smoothies.
And the more fun behavior/overall temperament/language update. He has been so much more affectionate and personable. I’ll hear him say, “Where’s Mommy?” while he’s in another room and then walk up to me and want to sit on my lap. We hear lots of “big hug” requests all day long. Though he would readily receive affection, it used to be a rare occasion when he would initiate it. He’s also started saying, “silly goose,” when something is funny, which is just the cutest thing I ever did hear. “I want ____” statements are happening much more readily now, and the other day, he got up from breakfast and clearly said, “I want to go play.” Hooray for five word sentences!
We are still working on more reciprocal conversation. He loves to say good morning and ask how everyone is doing but has a hard time answering the question himself. A lot of his language has a bit of a rote feel to it, which makes me smile. For example, when he’s upset, you might hear him say, “It’s okay, buddy,” something he has heard quite a bit. 🙂 My personal favorite is when he’s given something, and he shows his gratitude by saying, “thank you, welcome.” Just wants to make sure both giver and receiver are covered.
We also had a great Halloween and hope you did, too! James still gets a little confused as to why we ring someone’s doorbell and then leave right away. He tried to walk into every house to visit, so we only made it to a few 😉 Our incredibly kind neighbors made him feel special by making sure there were non-food treats set aside for him.
Can we talk about how confusing nutrition is? It’s like advice on getting a baby to sleep times a million. It’s challenging to obtain solid, well-accepted data on nutrition since it’s hard to do a randomized controlled trial with people and the food that they eat. Add picky kids to the equation, and it is virtually impossible. So what one expert says will heal everything, another says will put you in harm’s way. Roll the dice 😉
My envy of plants with their diet of water, sunlight, and some good ol’ CO2 continues.
Fortunately, it seems we’re learning more and more about the human microbiome and epigenetics. So while the experts are making sense of these things, we do our best to hook onto really smart health practitioners who are constantly obsessing over all of this information, scour the Internet, listen to other families and parents who have experience with similar situations, and listen to our bodies. In James’ case, we watch like a hawk for any physical or behavioral changes and do our best to limit the variables that could explain any changes. And most importantly, pray for guidance.
Shortly after my last post (finishing up week 4 on modified GAPS), James seemed to be going through a regression period. His eczema and overall demeanor were still worlds improved from what they had been, but an eczema flare showed that something was going on, and so did his irritability, less adaptability, and increased stimming. He also randomly threw up after a couple of meals.
So we began the guessing game. Is the zucchini we tried bothering him? I made the broth more concentrated this last round thinking it would help him. Was that too much? He’s eating way too many bananas…that definitely could be it. Was he exposed to mold somewhere or some other toxin? Or is it just kid stuff? Maybe he’s tired. Maybe he’s over scheduled. Maybe not scheduled enough. Maybe his little sister is pestering him too much.
I often observe his cheeks while he eats meals to see if there’s a difference in redness or bumps after he finishes. After we included daily avocados and made the broth more concentrated than it used to be, we started noticing he would rub his cheeks during meals. After the broth, especially, they seemed to become red pretty quickly. Which, I guess, is strange for eczema to worsen so fast, since it can often take 24-72 hours to show up after a trigger.
So that brings us back to the histamine sensitivity hypothesis his physician suggested after he vomited during first couple of days on GAPS. Histamine issues can come along with gut dysbiosis. When you look up histamine foods, they’re pretty much all of the foods that James eats—broth, avocados, fermented foods (like his beloved homemade yogurt), bananas. He also seemed to have more trouble when I was daring and added a splash of the fermented sauerkraut juice in his broth. GAPS is high on the fermented foods, which are also high in histamine.
I guess that means we need to regroup again. We can’t remove all of those high histamine foods, since he would be left with chicken, ghee, blueberries, supplements, and the tiny pieces of vegetables we are able to hide in his food and smoothies.
But we’re going to try to limit them to see if histamine is indeed a problem. And we can do things like adjust the broth cooking time so it has less histamine. We can avoid serving him leftovers as well, as the histamine levels increase the longer foods stay in the refrigerator. And figure out how to get some other foods in James in the meanwhile 😛
We’re also trying a new prescription called low dose naltrexone, which blocks opioid receptors and is supposed to generally boost the immune system and calm down inflammation. Let’s see what happens!
Though it’s a little frustrating when we have to reassess, the progress continues. It goes in waves, but the general direction is still forward. When we visited friends who hadn’t seen him since January, they were floored at how he had grown. He had much more interest in interacting and communicating and had a much faster warm up time. Since you can easily lose sight of that in the day to day, it was really nice and affirming to hear.
When it’s obvious he’s feeling well, he is THE most delightful person to be around. Sunshine radiates from those beautiful eyes and smile. We work every day to allow him to feel like his best self.
And for Thomas who continues to stick to GAPS religiously (he’s on stage 4/6 of the intro now!), he is still gaining weight and tolerating new foods as he slowly introduces them. Depending on how he feels, he might jump to an earlier stage of GAPS to let things settle before jumping to the next food. For the past two years, he has lost weight, plateaued, and then lost some more, no matter how much he ate. It is so exciting to see things move in the right direction for him!
Thomas is generally feeling better, and he’s eating a ton, including foods that have caused reactions in the past year or two.
These include- eggs, zucchini, broccoli, cauliflower, and ghee! A drop of ghee made him sick for two weeks a few months ago. Now he eats it on and in everything with no issues.
James has also continued to improve! It took a little bit of time to recover from the plethora of new things we shouldn’t have given him all at once, but after a bit of a reset, he came back stronger than ever.
His cheeks are still just about clear of eczema (yay!) and the other patches on his arms and back are decreasing a little bit each day. He has also been eating much more than usual, which is so gratifying. Still limited foods on his modified GAPS diet (meat stock, chicken with ghee, avocados, homemade yogurt, bananas, blueberries), but we have nothing but time. Also can we talk about how much chicken he is eating?? He’s always refused meat, but cooking the already boiled chicken in ghee (so much ghee) has just made a world of difference for him.
The next new food is going to be a tiny bit of squash blended into the soup to see if his body can tolerate it. If it does, then we’ll see if he will accept small pieces of it that we don’t hide. 🙂
Also, a lot has happened these past two weeks in terms of behavior and progress!
Outbursts—reduced dramatically. I would estimate about 75% reduction, especially in the last few days. And I’m guessing that many of the outbursts that he did have were because he was hungry, and we hadn’t figured out yet that he needed much more food than in the past. Transitions have been easier, he’s more flexible, and he’s more willing to try new activities. We have been lucky that he usually saves the more vocal protests for at home. He’s pretty good at holding it together in public. But I can’t tell you how life-changing it is to not always be on edge waiting for the next outburst.
Mouthing- once again, significantly reduced. Maybe by half. In the past year or so, his mouthing has been out of control. We would walk out of a room and back in two minutes later to find him chewing on books, toys, furniture, just about anything. These past two weeks, I have barely given him his sensory necklace.
School progress- After three weeks of vacation, James returned to school last week and had the best first day back ever. His physical therapist reported that he was understanding and following directions in school so much better. At one point, they asked him to sit in the red chair, and he responded, “no, green chair” and walked over to the green chair where a friend was sitting. They were so excited, they had the poor friend move to a different chair. So..maybe putting his own spin on the directions. But understanding and then interpreting them to his liking, for sure.
Communication- We’ve heard more unprompted sentences these past couple of weeks, and so have his teachers! He has also been making more attempts at conversation both with us and with people outside of his family, which just warms my heart. It is my favorite.
Gross motor- For the first time, when we were in the front yard, James took off independently and walked down the sidewalk, shouting, “let’s go!” He made it all the way to the corner. We joke that, “c’mon James!” is probably one of the most used phrases in our house. He needed no coaxing that day.
I remember one of his very wise therapists telling me when he was a few weeks old that we had to remember this was a marathon and not a sprint. My naïve, eager self half-listened at the time, but obviously remembered those words. I never thought the marathon would involve food and overall health, but thinking of it in those terms has helped a naturally impatient person to grow the patience muscle a bit more. And it has been and will continue to be worth it. God knows what we need to work on, for sure.
It’s been a chock-full two plus weeks! It seems we have experienced all of the emotions and physical symptoms we’ve had in the past two years in these past 16 days.
In preparation for GAPS, I read a lot about other people’s experiences, and I can totally see how many people have had to start and restart this multiple times. It. Is. Intense.
The first couple of days, the kids reluctantly ate their soups for meals. And we realized how quickly we would go through soups and the homemade yogurt. Though we were technically allowed to add vegetables from day one, we tried to give everyone a day or two of just plain broth and meat with salt in case anything else would aggravate the very reactive gut linings. Georgia was cool with the chicken broth, but on the second round of plain beef soup, she made it known that she was done. I couldn’t blame her.
James was never happy to see soup, but we’ve been working with him to eat broth for about four months in preparation for this. Though James ate foods with all kinds of tastes and textures as a baby, he started to become picky around 15 months, and when the gut issues became more pronounced, so did the pickiness. Unfortunately, we usually have to play kid music videos to get him to eat the soup. This drives me bonkers. I can feel generations past and present and any childhood expert shaking their heads at me. But I tell myself that most of them probably don’t have a malnourished child who is reactive to a million foods and has sensory issues with foods on top of it. So youtube it is-for now.
On the second and third day, James refused to eat soup at dinner and then vomited. The third day, it was projectile vomit. (Fun fact- it was also directly on my MacBook. He’s an excellent shot.)
That third day dinner, he then refused to eat any yogurt, and he was extremely lethargic. When I took his temperature, it had actually dropped significantly, which scared me enough to find the contraband Cheerios and force feed them to him until he started to get his energy back, all while I stress ate raw honey.
We spoke with his doctor the next day, and she wondered if it was a histamine reaction since broth could be a high histamine food. His skin had actually completely cleared from any eczema, and when we did some blood work shortly after, his histamine levels were within normal range, so we weren’t sure if that was the case. Obviously it’s a bit hard to tell after the fact.
Dr. Natasha Campbell, the creator of GAPS, had mentioned on her FAQs that vomiting can be a sign of hypoglycemia when a patient’s carb intake is significantly cut. Though James was already gluten free, his limited diet still consisted mainly of carbs with Cheerios, quinoa pasta, and bananas. So in consulting with his doctor, we moved him to a modified ketogenic diet, which is essentially the same thing as the full GAPS diet, just without the more intense intro stages. It’s still completely grain free, all whole foods, and avoiding certain inflammatory foods. This made us feel a little defeated, as the introduction stages of GAPS are set up for more intense healing of the gut lining. But maybe we can go back to the intro once his body starts to adapt to low carb ways and he becomes less picky, God-willing!
After making this change, James was much better. His skin was still clear, he was happier, more verbal, singing more songs than usual in their entirety, more aware of his surroundings and more interested in the activities of the people around him.
He even tried a couple of new foods!! We’ve read about this happening for kids who are picky eaters. We tend to be attracted to the foods that our bodies don’t process well. When we take them out, we become more open to other things.
James eating “pancakes!”
“Pancakes”- Four eggs and a cooked chicken breast blended in the food processor. Fry up the batter in ghee like pancakes! Recipe courtesy of Julie Matthews
The kids were nuts about these things. Fry little shreds of chicken in ghee until they get crispy like chips. Thomas came up with name and method- reminiscent of the crispy pieces of chicken his mom used to make for him.
James eating mixed vegetables??
This was the most beautiful and bizarre sight. These were made by my very talented mother-in-law in one of the soups. They were in Georgia’s plate, and he just went for them. And ate the whole plate.
So of course we got excited and also gave him a birthday cupcake for Georgia’s 2nd birthday….twice. It was a GAPS-approved recipe with all healthy ingredients, but definitely not something his body was ready for. The eczema started to come back. So did the edginess. And so did the pickiness.
He hasn’t touched a cooked vegetable since then, and the “pancakes” are now licked (still some serious progress!), but he never takes a bite. We are going back to plain broth, homemade yogurt, avocados, blueberries, and bananas for a few days to get his body back to where it was.
Thomas had a rough couple of weeks. Headaches, nausea, fatigue, insomnia, shortness of breath, all of the fun symptoms you can imagine. The second day, he actually broke out in a fever and chills! Apparently this can happen from bacteria die off. He hid the scale the first two weeks, so he wouldn’t be able to see how much weight he lost.
Some people try to start this diet during time off from work or an easy period of time. Being the sacrificial father that he is, he started it when he had a million things going on at work so James could start it during a school break. Somehow the man survived.
During the second week, his mom came to help us cook and take care of the kids. Though I am generally a good recipe follower, I don’t know food well enough to know what herbs, etc, work together well. So she made our soups into gourmet soups, which helped a ton. Thomas’ weight loss has seemed to hit a plateau, so hopefully regaining it soon follows.
He’s sticking out the introduction stages of GAPS and is currently on stage two! And the past couple of days, he’s started to feel much better. Just really tired. Making progress.
Georgia and I moved with James to the full GAPS diet. She was much happier to see blueberries, eggs, mangos, and avocados back in her life. She’s also been asking for birthday cake for a couple of months, so she was thrilled when her own birthday cupcake came. Her digestion has been a little off, but hoping that’s just because she had probably more sweet things than recommended for her family birthday party (Though we managed to make it almost all completely GAPS recipes! Thanks, Internet!)
And for me- I actually feel great physically. The first couple of days, I had a headache and felt really weak in the morning until I ate. But my body has adapted to the grain-free lifestyle, and I definitely have more energy than I normally would on not a lot of sleep. I’m hoping the boys follow soon.
So, some first two week reflections:
Lessons that were/are hard to learn for us—
Don’t rush foods when you have food sensitivities. Just don’t. Even if it’s a sibling’s birthday party, and the parent guilt starts to take over. Give the body a chance to adapt and heal with each new food introduction.
Nothing is going to be perfect. Really appreciate and be grateful for those wins when you get them.
Time. So much time in the kitchen and away from the not super independent little children. It’s not their favorite or mine. I’m hoping we become more efficient as time goes on. We try to make things in big quantities, but we also seem to eat them in large quantities? Working on a better plan.
Social situations- navigating these is pretty tricky. James is generally used to eating separate food, but Georgia is not. We try to bring along snacks that they both love, so they don’t get too much snack envy.
James trying three new foods in a week?? Though we had a bit of regression these past few days, we can’t forget that. That’s pretty much a year’s progress, considering his history.
Even though it’s so much time, I love cooking like this. I love feeding my family whole, organic foods and nothing processed. It’s been an intimidating goal for us for a long time, so in many ways, it’s a blessing that the issue was forced on us.
The bit of progress we’ve seen in these past two weeks is so very promising. Makes it all worth it!
We are so, so, SO blessed to have so many supportive, loving friends and family. There were so many encouraging messages. And we could feel all of the prayers lifting us up!
Thank you for following. Here’s to the next couple of weeks!