Yesterday, I took Hayden for her much anticipated appointment at Yale. It was a rainy, raw, March morning, and the directions to the parking garage we needed were sketchy at best, but Hayden is a terrific co-pilot, and we made it with plenty of time to spare. When we scheduled this appointment we were so happy to get in because we were sure that they would be able to offer us some answers and provide Hayden with some desperately needed relief. I mean, it’s Yale New Haven Children’s Hospital! How could we not be excited? Of course, they have the answers. All the answers.
I wish I could say that’s what happened. I wish I could say that my baby girl is on her way to a pain free future, that they were able to help her, or that they had a plan to discover those answers. I wish I could say that it went well at all. But, I can’t say any of those things. All I can say, honestly, is that the morning was a colossal waste of our time, energy, and co-payment.
You see, because the pain has been consistent (for almost two freaking years) the doctor didn’t find it necessary to repeat any tests. In fact, he didn’t want to run any tests of his own either; didn’t even want to run blood work for a current reading. Had there been changes: blood in her stool, extreme weight loss, etc…he would have repeated some of the tests, but in the absence of change, he thought it safe to take the previous results “at face value.”
He talked to us at length (I’ll give him that) about the statistics, about how common stomach pain is in teenagers, and he examined her (although quite briefly) and said that he agrees with the diagnosis from CCMC. He concluded that she has IBS without constipation–or, since he called IBS an adult diagnosis, he concluded functional stomach discomfort with lactose intolerance. He said she should increase her fiber and avoid foods she knows will irritate her stomach (gee, thanks) while participating in activities that might distract her.
He offered no suggestions for pain relief. Zero. Even when pushed, he said only that she may grow out of it. Fingers crossed.
We exited the building, back into the rain, in silence, Hayden walking a few feet ahead of me trying to get back to the safety of the car as quickly as possible. We were shellshocked. Not that we expected complete answers from a single visit, we knew that was not going to happen, but we had expected some sort of investigation into her symptoms, some semblance of support for her situation. We were stunned. We were frustrated. We were angry. We, or at least I, felt dismissed.
This is not “functional” stomach discomfort. This pain rules Hayden’s life; it dictates what she is able to do and what she has to postpone or forgo, and she often feels as though no one understands that it is real. It’s been going on for long enough now that her friends are bored with it, and the support they offered initially has faded. She’s feeling alone, depressed, and, still in physical pain; she cries daily. As a parent, there is nothing more difficult than to witness your child in pain, and not be able to fix it.
So, I called a friend who is a homeopathic therapist, and asked her for help. I’m not at all certain what has taken me so long to call her. I think it was a combination of not thinking Steve would be okay with this approach (which, I may have been correct in thinking earlier in this process, but he is totally on board at this point), insurance doesn’t cover her, and she is expensive. Also, I trusted the doctors to be able to offer some relief.
She says she can absolutely help. We are at the end of our collective rope, so I pray she is the answer. Fingers crossed.