Wednesday, April 3, 2013
On not giving up
I listened to first opinions, to second opinions and to a lot of really good guesses. I retrieved more stool samples from dirty diapers than should be required of any one person.
I subjected my son to blood tests, elimination diets, an exam by speech, language and food pathologists, and one particularly awful barium test to scan his GI tract.
And I got no where. And I got no answers.
I was told to just let it go. I was told (by experts, no less!) that my son's problems were probably nothing. That they bothered me more than they bothered him. That he would probably grow out of it.
But I wasn't buying it.
So in the end, I listened not to the experts, but to the good advice of a good friend, and to my mommy instincts, both of which I've learned to trust very well.
"Don't let it go," my friend insisted. "You are Jacob's best and only patient advocate at those appointments."
She was right. And so I pressed on, through multiple visits to GI doctors, through nine months of severe stomach issues that came at the end of almost two years of various eating and digestive woes. I pushed for answers, and finally met a doctor who was willing to help me help my son.
"What do want the outcome of all this to be?" she asked me during one particularly frustrating visit. "What answer do you want?"
I want it to be nothing, I told her. I want my son to be fine. I'd love it if the GI specialist was right, that this is an issue my son will outgrow. If that's the case, then we'll know soon enough, I told her. But if there is something wrong, and I don't do everything I can to find it, then I've failed him.
She agreed to look over his paperwork one more time. Since his problems began almost at birth, giving his patient records a second glance is no small task.
She pointed out that he had tested negative for Celiac, but that we had never tried a gluten-free diet with him to see if it led to any improvements. She told me it wouldn't be easy, and asked me to prove to her just how badly I wanted an answer.
"Forty days," she instructed me. "For forty days, I want you to eliminate every trace of gluten from his diet. If you see no change, there are two tests we haven't done that we can try. If you see any change at all, I think you might be on your way to an answer."
Within two days, we noticed a marked improvement. We agreed it was too soon to tell, but we were excited nonetheless. The change stuck around, and after a few weeks, the marked improvement had become our new normal.
After forty days, we went back to the doctor.
"Don't tell me anything yet," she said. "I want to weigh him first."
And my son, for whom weight loss and slow or no weight gain has been the norm since birth, had gained two pounds in 40 days. I nearly cried when I saw the scale.
I shared my observations with the doctor, and she agreed with my findings.
"Based on everything we're seeing," she said, making notes on his chart, "I'm going to mark this down as a diagnosed gluten intolerance. You have your answer, mom. You should always trust those mommy instincts."
So we're learning how to eat gluten free around here. It's been an adventure for a family that loves homemade bread and cookies. Justin has perfected his buckwheat pancakes, and I've finally come up with a gluten free bread recipe that actually tastes good. We've learned to live without Starbucks' cake pops, for the most part, and Jacob is learning to ask "Is it gwooten fwee?" when someone offers him a cookie or a cracker.
I wish we had tried this much sooner, but I'm thankful to finally have a remedy for Jacob's stomach woes, and an answer to our prayer for a diagnosis.
And I will always trust my mommy instincts. And I will always be my kids' best patient advocate.