Getting the Diagnosis

It isn’t always easy to get a big scary disability diagnosis. Most doctors don’t want to be the one to deliver the crushing news and they certainly don’t want to subject the child to needless medical intervention due to an incorrect early diagnosis. As modern parents, we tend to get wrapped up in horror stories on the television and on the internet. If we aren’t careful, we jump on the tiniest problem and blow it out of proportion while the doctor tries to talk us down. This does not create the best environment for an early diagnosis.

In the little man’s case, his earliest symptoms came on slowly. When he first arrived at our house, the muscles in his arms and legs were tight. A sign of cerebral palsy, yes, but also a sign of nothing at all, a symptom that could go away with age. Even when he started to fall behind and experience more distinct delays, most could be explained by his premature birth.

In fact, when his pediatrician first recommended moving him to a childcare facility with therapists on staff, she wasn’t sure if he would get in and didn’t know if he would have to be there more than a few months. When he was tested by the therapists, he barely squeaked into the school because they had to take into account the premature birth and test him as the age he would be if he had been a full-term baby. Logically, I understand this. There is no reason to throw therapy at a child who is only experiencing normal delays because of his birth situation. There is no reason to stress out the parents and the child, add a new client to an already-full therapist’s roster, and incur the medical bills for treatment the child wouldn’t have needed if you had only waited a couple of months. Emotionally though, I knew my child needed the therapy.

When I looked at the little man, I saw a child who was exposed to cocaine use in utero, had marijuana in his system when he was born, and had next to no prenatal care. Mitigating factors. I could see the whole picture, but the premature birth became the big buzz word and was getting in the way of our diagnosis.

The first doctor to say the big bad “cerebral palsy” was actually the little man’s gastroenterologist. She mentioned it off hand and suggested that we might get that diagnosis in the future. In a way, I think she probably knew what we were going through and was trying to prepare. What she didn’t know is that we were already prepared – my husband’s sister has cerebral palsy. We know what it looks like and he knows that it looks like in a child. We knew.

Eventually the little man started to fall more and more behind. By that point, everyone knew, but no one would diagnosis. Finally our big moment came – a neurology appointment! This was it; we were finally going to get somewhere.

And we did. The cerebral palsy diagnosis came quick and easy. Even though we were prepared to hear it, the words shook my husband and me quite a bit. I wanted the diagnosis. I wanted it so bad because we needed it to keep moving forward and start fighting for our son. But I didn’t really want to hear it.

Next came the MRI and more surprises. We didn’t really expect to learn much from the MRI, but we did. It turns out the little man’s brain had not formed correctly. Something – likely a virus and not the cocaine, amazingly – had interrupted his development. The result, in layman’s terms, is that the little man’s brain doesn’t have as many bumps and wrinkles as the rest of us. Huh, go figure.

Everything changed once we had a diagnosis. It was almost like a switch was flipped and we suddenly went from biding our time to waging an all-out cerebral palsy war.

No one will really win this war, but we will do everything possible to gain every little bit of ground we can. This is a hill I am prepared to die on.

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2 comments

  1. Like you, I wanted a diagnosis. I wanted it so bad because I needed it to keep moving forward and start fighting for my daughter. But I didn’t really want to hear it. I don’t understand why so many parents don’t want a label, a diagnosis when something like this can help you treat (and move forward like you said.) I never really received an actual diagnosis. For us, our daughter was called mildly mentally challenged (although in the 80s, that was not the term they used at that time). The doctors said it was from an unidentifiable syndrome which is truly frustrating. As a parent, I wanted to blame her disability on something, find fault with someone.

    Thank you for your honest approach/post. I found you on Love That Max today. Glad I found you. http://outoneear.com

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