There is really nothing worse than having your kid in pain and not being able to make it better. Or, rather, there is and I count myself blessed that I haven’t had to go through it.
My daughter was sick over the weekend and seemed to be on the mend until last night. Last night, she spent about 4 hours wailing and arching and thrashing trying to get away from pain in her stomach.
It reminded me so very much of her first year. She spent most nights her first year trying desperately to get sleep, despite the pain.
I talked to our first doctor two weeks after she was born and said there was a problem. Something was wrong. I was told that there wasn’t, some babies just cry.
I said again at our six-week appointment that something was wrong. I was questioned about my own state of mind and sent home with the words, “Babies cry, she’s fine. You may just need to let her cry. Call us if you want to talk about anxiety and depression.”
I cut all dairy out of my diet. It helped some. We went from sleeping for less than 20 minutes at a stretch to sleeping for up to 40 minutes if she was held.
At six months when we started to introduce foods we noticed more patterns start to emerge. Strawberries caused a rash. Cinnamon caused the worst diaper rash I’ve ever seen.
At a year, we found that she couldn’t have soy because it caused stomach pain, diarrhea, and rashes. Milk products caused projectile vomiting. Eggs caused hives and wheezing.
But through it all we didn’t sleep. We slept in snatches and we slept together. I trusted my daughter. The doctors kept telling me that she was “just in the habit of waking up” and that I should let her cry. I told them they were wrong, she was in pain and it was their job to figure it out.
The doctors fought me. They didn’t want to check. They didn’t want to do tests. They told me that she was gaining weight and hitting her developmental milestones and that was all that mattered.
I couldn’t seem to get anyone to value her well-being. No one seemed to care that she was in pain. When we weaned at 13 months, because I needed a medicine that could have damaged her liver, it got worse again. Coconut milk was giving her rashes, rice milk left her with painful constipation, and the prescription formula was the worst.
My friend, Chris, watched her one afternoon and called to ask if poop was supposed to look like coffee grounds. The answer is no, it’s not. That’s blood.
I got the doctors to test for allergies and to run a scope into her stomach. They found an allergy to eggs and nothing else. The doctor said that she probably had irritable bowel syndrome and not to worry unless she stopped gaining weight and that she was probably just waking up because it was a habit.
I, again, chose to believe my daughter. She was learning to talk and would wake up repeating, “Owie, Owie, Owie!” while holding her stomach.
We went back to rice milk. She screamed every time she pooped. She refused to poop unless I was there. It was too scary to be in that much pain without her Mommy there to hold her.
Finally we found our answers. We were having dinner with friends and they served corn-on-the-cob. I gave a piece to Fiona, only to have her face break out in an instant rash.
Oh! Corn is everything! Corn-syrup solids are the main ingredient in even the prescription formula.
We cut out corn, corn-starch, corn-syrup, all of it. And we switched her to Almond milk to reduce constipation. Within days we had a totally new child. She stopped crying. She started sleeping. She stopped clinging to me and started exploring her world. She was happy.
She was also not in pain for the first time in her life.
Last night made me think of all this. Made me remember all that we’ve been through to get to a point that she can eat, and sleep, and live without pain. I feel so bad for her, but so very glad that she is my child.
This morning we’re a little worse for the wear. She’s clingy and I’m tired. It’s probably going to be a little bit of a rough day. I also went label reading to see if I missed something and sure enough, those hamburger buns have milk and the second to last ingredient in the new cookies is cinnamon.
I think the point of writing all this out is that, no matter how hard you advocate for you child (and there were times where I was taking her to the doctors weekly and calling them daily), there will be times when the experts will not listen to you. They will not believe your child. They will tell you not to trust your child.
Ignore them. Trust your child. If you’re wrong, you’ve lost some sleep. If they’re wrong, you’ve left your child in alone to endure pain.