Dietitian: "I don't think it's the rice. I've never seen anyone react to rice." Oh, don't worry. If it's anything at my house, it's that we like to be the exception to the rule.
Well, where to even start. I know this blog post about Rylie's Adventures is long overdue. The reason is because it's a story that spans over a month's time, and I've been thinking I wouldn't be able to do the story justice, or would forget some key parts. And, because I've had to recover physically and emotionally from the event.
When Rylie was still on a bottle, she had trouble with constipation. When I switched her from Alimentum to Nutramigen and then to Goat's milk, the constipation went away.
Then, I mentioned back in March that Rylie had diarrhea for two weeks straight. That caught my attention, of course, since she was prone to constipation, not diarrhea. Well, it continued. For a month. And I'm not talking about a runny diaper that was annoying to clean up. I'm talking about every morning before work, walking in to find a baby, and her crib, covered in liquid poo. Down her legs, on her arms, everywhere. It had come out liquid-y while she slept, and then she'd rolled around in it.
So nearly every morning for a month, in an already busy and hectic morning rush, my alarm would go off. And I'd think, 'Ok. It's go time. Let's get this started.' Walk into room to find happy, awake baby Rylie, covered in nastiness. Put said baby (who usually loves baths but since it's the morning and not her idea starts to cry her eyes out) into the bath. First wash all poop off, let water out, wash again because poop really makes me paranoid. Dry off and try to diaper squirmy baby. Put baby in family room with brother, strip crib sheets, throw them in washer with the clothes she wore to bed (and wash a second time after work because, yes, I'm paranoid). Get clorox wipes or bleach solution to wipe down crib mattress and sides of crib. Then check on Rylie's diaper and perhaps change her a second time, because some mornings she had had diarrhea again while I was cleaning up.
It looked a little something like this, but it was not spaghetti:
(It wasn't really on her face, just everywhere else. Including her hair.) : p
By week 3 or 4 I had figured out (after trying putting her to bed wearing two set of pants, or two diapers) that putting a disposable diaper on her and then a cloth diaper on top, and making it pretty tight, kept most of the poo in so that I could skip the bath part. But by then I was worried. What in the world was going on with my baby girl? Was it yeast? Hayden has had terrible diarrhea from yeast for his whole life. I started increasing her probiotic intake.
Click the Read More link to continue:
The timeline, in retrospect, was this:
Week 1: she got a common stomach virus. Hayden had it too, actually, for maybe two days. Being sick weakened her immune system.
Week 2: she ate wheat at daycare (stole her friend's graham cracker at snack time). Either she has celiac disease or is just allergic to wheat, and her weakened immune system and gut couldn't deal with the foreign food. At this time her igG blood test for food allergens also came back, but as an insufficient sample (not enough blood on the test card) so I had to redo it and send it in again. Frustrating!
Week 3 - 4: at this point her gut couldn't recover from the previous two assaults to her system, and other things she was eating that she was allergic to were having a greater impact. She was choosing to drink lots of rice milk. Since she was allergic to it [but I didn't know this yet], this was worsening her gut health and continuing the diarrhea. She was also eating lots of fruit bars, which had oatmeal, another food she was allergic to.
In this video: I told her No after 3 fruit bars, so she took all the fruit bars out of the cabinet and was hiding them around the house and playing with them in the family room. She was also walking around saying, "No, no, no..." though of course once I started the video she doesn't say much. : ) You can see in this video that she has some type of eczema or other rash on her cheeks, another sign of allergic reaction.
Week 4.5 or 5 (I was delirious at this point, so I can't remember!): her second IgG test came back with the following result:
Such an Aha! moment, as it had to be the rice milk she was guzzling. (She was eating the fruit bars and a little flax, but none of the other things on the list.) We saw the same thing with Hayden before we changed his diet. He was guzzling cow's milk, the very thing that he was allergic to. Taking away rice milk completely for Rylie was the solution. (And the beloved fruit bars!) Within 2 days she stopped having diarrhea. And, a note, that there was not even a low reaction to yeast, which was great news, and no reaction to corn which was also something the dietitian had suggested. I'm so glad I did the IgG test, as it's so hard playing the guessing game and not really knowing.
IgG Test kit:
The blood sample you see is the first one that was returned because there wasn't enough blood on the dots. Sigh. Hard to get a 1 year old to sit still and put blood on a card when there's only one of you! Thankfully Jason agreed to help me do the second test with her and I mailed it in.
Week 5: Rylie started having diarrhea again. I was frightened that rice wasn't really the answer. I got Rylie up that morning (covered in poop) and saw that her arm was covered in poop and her thumb was in her mouth. Eww! What if she had e-coli? Now I'm kind of frantic. I knew a friend of a friend whose 3 year old (healthy!) daughter almost died of e-coli a few months ago. She had constant diarrhea, but wasn't really sick, and suddenly was deathly ill, sent to Riley Hospital for Children, put on kidney dialysis... Here is my train of thought: "Aak! Why hadn't I remembered this before?! They're going to send my baby to the hospital tonight... I'll need to find someone to watch Hayden. Ok, I can do that. Ok, call Pediatrician, pack what you'll need for a day..." They squeeze her in for an 11:30 appointment. We show up. Pediatrician kinda looks at me like I'm a crazy person. Which maybe I am at this point. Rylie is hiding her head under my arm, looking fevery but not deathly ill. Pediatrician reassurs me that it is probably just a virus, but gives me a test kit to go home and collect stool samples. Me, knowing that doctors aren't always right (after all, didn't Hayden's first pediatrician tell me "oh, he's just a boy, he'll grow out of it" for 2 years?) is still worrying and forming plans about what would happen if I had to spend the next two weeks at the hospital.
The next morning (Saturday) Rylie had diarrhea as expected. I turned in the three stool samples and waited patiently until Monday evening for the the results: not e-coli or any other horrible thing! Shoo. Diarrhea went away at this point for a while, but crept back. More information coming soon on the next steps in her journey.
And an aside:
After Rylie was off the bottle, I had originally chosen to give her rice milk, because I was pretty confident (from the constipation episodes) that she was allergic to cow's milk. Alternatives would be rice, almond, flax, or soy milk. Soy is a very difficult protein for anyone to digest, so that was out. Tried flax with her, but as soon as I started using it the stores quit carrying it. Almond is a common allergen... so the best option really was rice. And, as the dietitian said, "I've never seen anyone react to rice." Oh, sweet Rylie. I know she's going to grow up to be the stubborn, confident girl who does her own thing, blazes her own trail, and changes the world. Her actions show it. But do you have to be different in this, too, sweetheart? : )
Here's a good example of my Stubborn Rylie:
What milk does she drink now? She gets one cup of rice milk a day at lunch at daycare. At home she doesn't get milk, for the moment. In a month, if she continues to be diarrhea-free, I will start giving her a little rice or almond milk once a day, and make sure to give her an enzyme in the drink to help her digest it. At home she is getting watered-down juice with oil in it, so that she's still getting fat. She also eats lots of potato chips for extra fat. Now that she can chew crunchy foods I need to start her on a daily multivitamin, besides the liquid and powder vitamins she currently gets. And she snacks on GF cereal a lot, which has vitamins, too.
My two sweeties!
Well, there you have it, Rylie's Poo Adventures come to a close, at least for now. Moral of the story? As soon as you can afford it, have your child do an IgG test. $200. You prick their finger and mail in the card. Worth the money to know exactly which foods to limit in your child's diet.
Here's what the results look like when you get them back:
Moral #2: (No pun intended): Autism is preventable, and treatable. I'm asked daily by someone, "Do you think Rylie has Autism?" My answer: She would have been on that path, if I hadn't had Hayden, and didn't know what to do.