Friday, November 30, 2012

Rylan's Health Story

This is a (long!) story about the past year with our little son Rylan. He’s had health challenges that have been drastically changed by altering his diet. I hope this is an encouragement to someone who might be going through the same things with their little ones!  

Rylan was 16 months old when our second child was born. Rylan’s behavior changes really started then, but we at first thought it was because of bringing a little baby into our family. However, after months and months went by, he was only getting worse. We realized that we noticed this behavior at 16 months, but it wasn’t because of the baby. It was because he was getting older, his personality was showing more, and his gut was getting increasingly damaged by the food I was feeding him.

Rylan started solid foods at 6 months with homemade baby purees. I was a good mom for making all of his food from scratch, right? No, it’s because we live in China, and they don’t have jarred baby food over here. Anyway, I went according to the chart, although I did give him eggs a little earlier than it recommended. I stopped nursing him right at a year old, so he was eating everything and drinking cow’s milk by then.

He started at 16 months with screaming. He would scream over everything. He would scream when he was excited. He would scream when he was angry. He would scream when he was in the bathtub. He would scream when he was in his bed. Ugh!! In a small, concrete apartment, it was loud!

Then he started throwing his toys. I know every kid throws toys, and they need to be taught by their parents that that isn’t okay. However, it was like an impulsive move with Rylan. He’d be standing next to the couch driving his car along the cushion. He’d be really concentrating, then in a flash, he would throw it across the room. Then he’d look at me, panic, and scream his head off like I had just snatched it away from him. He’d get it back, start playing so nicely again, then bam! All of a sudden, he’d throw it again so quickly, then get so upset that he didn’t have it again. This happened too many times while being disciplined for it, and his reaction was too distraught for it to have been completely intentional.

He didn’t like to be touched or have his personal space invaded. Unless he was sick, he never wanted to sit on our lap, rock in the rocking chair, and he NEVER laid his head on our shoulder as we carried him around. I always thought that was because he was just too active, just “being a boy”, to want to be held occasionally.

He didn’t like crowds at all. It was really hard being here in China because 1) there are huge crowds everywhere you go, and 2) they all wanted to touch him or pick him up. It was very common for us to be walking through crowds, and he would scream halfway through them. We always went to church early to help prepare for the service, and as soon as we would get to the door, he would refuse to go in. I would make him go in, and as soon as he got in, he would run across the room screaming. He was able to be distracted, but it was quite common to hear him screaming at something quite frequently. I never knew if this was the crowd that bothered him or the music practice that bothered him, but he was definitely bothered!

If one of our friends who he was familiar with and spent time with tried to give him a high five or play around with him, it was a 50/50 shot. He might give a high five back, or he’d scream at them like they were annoying the life out of him. If anyone, even a good friend, scared him, like came up behind him and touched him, or ran up to him and picked him up, he would scream and scream.

He didn’t play well with other kids. They just bothered him. I remember we were at a friend’s house, and my friend had a baby who had just started crawling. Rylan was about 20 months old by then. She would follow him around, and he would scream at her. I tried to keep her away, but I heard him screaming his head off and he wouldn’t stop at one point. I came out of the kitchen, and he was in the bathroom. She was sitting at the doorway to the bathroom, so she had ‘trapped’ him in the bathroom. He was going crazy. I was going crazy!

We tried to discipline him. Before we had kids, my husband and I both had in our head that we were going to be fairly strict with our kids. If we said something, and they didn’t do it, we would follow through. We weren’t going to ‘give in’ and be pushed around by our kids. They were going to obey! We slapped his hand starting around 11 months when he would reach for something that was off limits. He responded really well to this, and often wouldn’t touch something again for a week or so before he tried again (except for any type of remote or phone—anything with push buttons was his downfall!). I don’t remember when we started spanking his thigh, but it was definitely before our second child was born, so before 16 months. If he didn’t obey and didn’t respond to a hand slap, he got spanked. If he threw a fit over something and wouldn’t calm down, he got spanked. If he kept screaming, he got spanked. It worked at first, but after awhile, it wasn’t working anymore. He would respond in ANGER when we spanked him. The advice we got from others was we weren’t doing it hard enough. We had to show him who was boss, and he would give in. Nope. We would spank, and he would get more and more aggressive. We would spank again for throwing an even bigger fit with screaming and throwing his body around, and he would just rage. It wasn’t working. I wasn’t going to beat my child, so something had to give. Something was wrong. We had first thought he was getting into his terrible twos a year early, but we began to realize that it was more than that.

Physical Changes
Along with his behavior, we started noticing physical changes with Rylan that weren’t normal. He started getting a round, red, dry rash on his back when he was 20 months old. I thought it was ringworm, but it didn’t respond to the cream I put on. It got bigger and bigger. In a few weeks, it had spread all over his back, and started spotting down onto his arms and legs. What I saw on the internet was that it was childhood eczema, very common, and he just needed to grow out of it. I could buy some medicine to help with the symptoms, but that was about it.

Around 18 and 19 months old was when he started having diarrhea occasionally. Then it was more and more. Then he got to the point where he wasn’t having a single normal bowel movement. We spent so much money on his diapers!  

Around this time was when he started ‘dancing,’ or so that’s what I thought it was. He would shrug his shoulders, but not at the same time. He would start with one, then finish with the other, kind of like he was doing ‘the wave’ with his shoulders. Then he started throwing his head back. It took a few months, about when he was 21 months old, for me to realize that these movements weren’t normal. They started to be more and more frequent, and I was getting concerned. Everything I saw on the internet was that tics were normal, but normal for school age children. I could only find one or two websites referring to a one year old with tics. One was about a child that went on to have autism, and the other was about a toddler full of heavy metals.

The apartment that we moved into when Rylan was 15 months old had stripes all over the floors and walls. My mom had warned us that those stripes might affect Rylan, but we thought she was being a little extreme. However, he would tic the worst when he was at home or when he was in a crowd of people, both things which are visually overwhelming to a little kid. Here’s a link to a youtube video with one of his episodes. Please excuse the messy house! Rylan's Tics

In May, we spent three weeks in a friend’s apartment when they went back to the States. His tics reduced by 85% after three days of being there. At the new place, he wasn’t being triggered by the stripes. He would still do it when we would go outside in a crowd, though.

Heavy Metals
After Rylan’s tics got to the point where he would do them in his high chair while eating lunch, we knew it was time to go to the doctor. A woman from our church in Shenzhen that runs a home/school for autistic children told us about her wonderful Christian doctor in Hong Kong that specializes in behavioral issues and how the environment affects children. We went to see her as soon as we could. Once we were there, we explained everything that was going on, and one of the things I shared was that I feared he had heavy metals in his little body. She was wanting us to just observe him for a few weeks, but I told her that I felt we had observed enough. She went ahead and ordered a hair test for heavy metals. We waited a few weeks for results, and sure enough, the boy was in the 95th percentile for heavy metals, meaning he has more metals in his body than 95% of the population. He was high on six metals including arsenic and lead. Just what a mom wants to hear! We don’t know for sure where he picked them up, but being in China, it could be anywhere from the air to the water to the food here.  

Yeast and his Gluten Free/Casein Free diet
The doctor also checked his tongue and his anus. His tongue was a little white, and his little bottom was bright red. She said for sure he has a yeast problem in his gut. I had never heard of that before. She said she could see the symptoms of yeast on his tongue (oral thrush) and the rash around his anus, which is being caused by the irritation of the yeast when he has a bowel movement. I can remember back to Rylan being three weeks old. He tongue was covered in white. I just thought it was milk residue from nursing constantly. She says that’s when his problem with yeast began. She said that yeast feeds on gluten, dairy, and sugar. She gave him natural supplements to kill the yeast, charcoal to carry the dead yeast out of his body, minerals to supplement the good metals that he was nearly depleted of, and probiotics to replenish the good bacteria since his digestive track was so messed up. She said that a build-up of yeast over time definitely affects behavior. It can make someone very uncomfortable and aggressive, and can ultimately affect them neurologically (which we see with the tics). His symptoms of yeast build up and his behavior made her recommend the controversial autism diet, the Gluten-Free/Casein-Free Diet. She also ordered a food allergy test, and although he didn’t show up as allergic to gluten or dairy, he did show up as moderately and highly allergic to other foods that he loved—oatmeal, bananas, eggs, coconut, pineapple, and a few others. I would have never thought he was allergic to those things! I am so thankful we were able to get that test done. I can definitely tell if he’s been eating too many eggs or bananas, as the rash on his back starts to come back.  

Rylan’s been on the GF/CF diet and supplements for seven months now. He is a completely different child! He is so outgoing (he says “Ni Hao!” to everyone that gets on the elevator), he plays with others, he responds to discipline, he doesn’t scream, his rash and diarrhea are gone, he hasn’t ticced in months, he sits on our laps and cuddles sometimes, he lets us hold him, and his little bloated belly is gone. These changes happened over the course of a few months, so they weren’t as obvious to us as they were to others. We went to the States for two months during month 5 and 6 of this new diet, and when we came back to China, EVERYONE mentioned how different Rylan was. We agree!

He needed to get his digestive system back on track before he could begin a detox of the metals, so we are getting ready to start that in two weeks.

So long story short: Rylan had several things going on—food allergies, horrible behavior, yeast in his gut, heavy metals, and tics. How are these all related? We’re still not sure. Here’s what I think might have happened, but I’m no doctor… He started out with yeast in his gut and food allergies/intolerances. This caused him to grow increasingly aggressive as his body was unable to process the food I was feeding him. As a result of bad digestion and as a result of living in China, he was depleted of good metals, making it very easy for him to pick up bad metals. The heavy metals made him very visually sensitive, making him tic in our apartment or in crowds of people. The doctor has not said this. It’s just the most likely scenario in my mind. I could be completely wrong, but SURELY these issues are somewhat related!

We are so very thankful to the Lord for putting that nagging feeling in our minds that something wasn’t right. We are so thankful that we were able to find a little information on the internet, just enough to make us think we needed to see a doctor. We are so thankful that the Lord led us to our doctor in Hong Kong who believes in trying everything else possible before medication to make a child healthy again. We are so thankful that Rylan has responded so quickly to his diet changes. We’re thankful that he’s young enough that he doesn’t realize what he’s missing. He knows what ice cream and cheese are, but he doesn’t know what they taste like. We make a big deal out of little things, like blueberries or a GF muffin, so he thinks it’s a big deal when he gets them.  

Some of you asked what he eats during the day. Here’s a few of his regular items:
Millet sweetened with honey or apple juice with raisins mixed in
Apple slices with almond butter
Quinoa sweetened with apple juice with squished fruit in it

Rice Cakes
Gluten-free crackers
Corn Chips

Gluten-free bread with almond butter and sugar free jelly
Gluten-free spaghetti and sauce
Leftover dinner from the night before
Rice and beans
Rice and tuna
Chicken wings

Rice mixed with any cut up vegetable and meat (cut up chicken, ground beef, any combination of vegetables)
Quinoa mixed with any vegetable and meat
Gluten free pasta with chicken and pesto
Sweet potatoes
White potatoes
Different soups—vegetable, chicken, tomato, potato
Different gluten-free baked muffins

*Rylan didn’t really care for the rice and vegetable or quinoa and vegetable at first. We went through several weeks of every dinner mixed with applesauce. Slowly he got used to the taste of less and less applesauce, so now he is able to sit down and eat a whole bowl of dinner without the applesauce.
**Sugar comes in MANY different forms.  Be careful for the "cane juices" or the "syrups."  Those are sugars.
There are a TON of gluten-free blogs/websites with great recipes! A lot of gluten-free recipes are really difficult to make, so I tend to stay away from those. Others are very simple. Take some time to go through recipe after recipe and website after website, and find sites with the recipes you think your child will like.

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