Friday, January 10, 2014

"Why don't you just give up?"

We had a doctor's appointment with Molly yesterday with the developmental pediatricians at Yale. We had started seeing them when our insurance was not accepted at Boston Children's and we needed help. Since changing our insurance 2 years ago, we have been able to be back at Boston, but have kept the Yale department in the loop. We see them infrequently, but they are intelligent doctors.

It's taken me close to 24 hours to process the discussions we had during this appointment.

The first topic, I agree with. They aren't sure how they actually fit into the treatment picture for Molly. I agree, they don't fit in. They were there when we needed them, but we completely trust our doctor in Boston even if we don't always agree.

The second topic, I'm still struggling with. The doctor asked me if I ever thought about just giving up because we may never get a true diagnosis.

We've heard a lot of Molly's current symptoms are the autism from some doctors and definitely neurological from others. We've had doctors tell us they know there is something, they just don't know what. My baby girl is a big old question, for which there is not a proper answer yet. Would you stop looking?

I had to listen closely, to try not to be too defensive. She went on to explain that in looking at Molly's chart, there have been a lot of Emergency Room visits and admissions and various specialists. I can't argue with that. There have been a lot of visits. All except one, were directed trips by a medical professional, who we called. We don't just pack her up and go to the emergency room for a fun time. The pediatrician's office closes at 5pm, and our uber-popular Dr. C is often scheduled to the max and can't always make time for Molly.

Some of her symptoms are really vague. Some of her symptoms are really scary. The large, red, painful welt on the entire back of her leg or the agonizing stomach pain that woke her from a sound sleep at 2am, or one side of her face that drooped followed by an inability to walk straight three hours later - all sent us to the ER. They all happened after hours, and they were all very scary. There have been more - falling out of nowhere multiple times a day, upwards of 6 or more zone-out spells in one day when she hasn't been having any.

Then there's the nights where she looks at me with tears in her eyes, reaching to be held as tight as possible, uttering the words - "I just don't feel like me, I don't feel right". We don't go every time, if we did, we'd move in to the hospital!  But to stop looking? I don't know how to do that. What if there is just one tiny thing that we uncover that helps to put all the pieces into place.

I know we see a lot of doctors. Trust me, I get the bills.

So, we've been told she fits into an autism diagnosis, but it doesn't truly explain her completely. What? At this moment in time, autism is the best diagnosis they can give her.

We've been told she has seizures, but she's not seizing, but that might have been a seizure more times then I can even count. You get why I'm so confused right?

Listen, I'm not going to put my girl through anything painful or stressful unless it's completely necessary. Routine blood work is necessary. Recurrent EEGs, probably not - so let's get those down to once a year or every 6 months unless it's an emergency! But, I'm not pushing for painful procedures - I'm asking for help. I know what I see, and my girl hasn't been the same since whatever that mystery illness was at the end of June. Very similar to right now, a few days of cold symptoms and a mild sore throat. Then she's just zapped and out of it and having all kinds of issues.

She now needs orthopedics to help keep her ankles form rolling. Her gait has become more narrow, her balance is less. The say, this happens to kids with XYZ, but she isn't diagnosed with XYZ....

So, NO - I will not give up. How can I give up? I know there may never be an answer, and our ultimate goal is to keep her as happy and successful as possible as well as safe. But, I look at kids who are now in their 20s and are just getting diagnoses for diseases that hadn't been discovered when they were little. Their parents never gave up - and it was not easy. I will never give up looking, because to do that feels like I'm giving up on Molly.

Thanks for listening to my stream of consciousness.



1 comment:

  1. Molly seriously has the best parents on this planet. You do so much for her, and you should keep fighting. The answer may not be known yet, but it will someday, if you keep looking! She's such a great kid, and deserves for people to fight for her!

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