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The Fight in Special Needs Parents

kids with disabilitiesNearly 20 months ago I started the long journey to unlock some (more) secrets of my son’s body. He wasn’t growing and even though he’d had a kidney transplant – well before puberty – the growth spurt boys usually get around age 13 didn’t happen, even though he was in puberty. As he started middle school (6th grade) I was finally able to focus on that issue as another issue with him was addressed. That’s the thing, he can only take so much hospital, doctor appointments, tests, new drugs and follow-up, so over his life we’ve been doing triage and the growth was the next thing we needed to address with his care team. Surprise! The team was perplexed.

The care and concern for the growth issues didn’t start or even go through his nephrology team even though they like to make you think they are the end all, be all, but they aren’t. That’s the image anyway (but it’s actually parents who are the end all, be all), that the care team who has the last word has the power in the care. They don’t deal with growth and so, I called our pediatrician to begin the process to unravel several issues and growth was at the top of the list. I scheduled an hour with the doctor (no, really, I told them I’d be there an hour) and our son and we started with an order for wrist “bone age” X-ray. Those results revealed at age nearly 14 he was showing at age 11.5, so yes, growth issue. But I could have told you that before the test.

We were referred immediately to an endocrinologist with a hefty waiting list and after a couple of months or more of waiting we saw the new doctor. To save time before that appointment I called his office and explained that my son gets labs all the time (for kidney checks) and I’d like to add what that doctor would like in lab work for the next round ob blood work. While I had to really push them to provide me an order for a future patient (Seriously, why wasn’t it easy for staff to understand this would save time and needle sticks?), they finally did and we were able to attend our first appointment with lab work so the doctor had what he needed to cover for first round of information instead of wasting another appointment.  He was great. Loved him. A lot.

He did what most doctors do in a case like ours, they need to get a handle on everything. They need to read the files, maybe talk to doctors, do some research and then meet again. We scheduled another appointment quickly and he started a med to stimulate his thyroid.

Then we waited six months.

There were no significant changes so he ordered just one test and we waited. We returned and it was determined we should “probably” start growth hormone. My husband attended that appointment and the doctor went on vacation and so, about a month later, I finally was able to speak with his doctor’s PA (physician’s assistant). She said the notes reflected that we were going to wait another four months.

“Um…no. We’re not. My husband went to the last appointment and he was pretty clear that Dr. XYZ said it was time to pull the trigger on growth hormone. And since I know it will take a bit of time to get approval, we’re probably looking at another three month wait. I have to tell you, I have a huge problem with this. I’ve been dealing with his growth issues for over a year and he’s not getting taller and the time we can treat him is getting shorter.”

That did it. She said she’d talk with the doctor and call me back. She did and she said they’d move forward to approval. It was approved the first try (proving it was beyond a doubt that he needed it.) He started it and after five months use he’s grown two inches.

He is finally taller than his three years younger sister.

He has a chance to be 6′ tall instead of the expected 5′ 4″-6″ based on the doctor’s best guesses. I made a pretty good argument that our son has enough issues that if we could help remove one (short stature due to kidney failure) we should all want to do it. We should all fight like hell to help change the course of just one thing, if we could.

So we did.

And our son is growing for the first time in years. Sometimes we win. And even when we don’t we keep fighting and this is a good example of why.

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