Molly’s Plan Forward

(Deep Breath). So, you will recall the last update regarding Molly’s medical investigation (see here). Well forget all of that, its all wrong and everything has changed. When we last spoke, we were on our way with the FODMAP diet to address her apparent low-disaccharide condition. Turns out the diet was crap. Yes, this is my shunning of the doctors and saying they are wrong. The diet did nothing to address the fact that she (supposedly) needed to reduce sucrase and maltase intake AND we still felt very wary that the fact she had low-enzyme levels actually meant anything at all. This condition seems fairly new, rarely diagnosed and not at all understood. We spent a lot of time very frustrated with our doctors because we couldn’t get answers to some pretty relevant questions. Not only would the diet be very hard to introduce to Molly, but it isn’t very healthy. It cuts out lots of good foods. BUT, none of this ended up mattering, because...wait for it, we just found out we have been on the wrong track all along.

Our GI doctor, who we’ve had a love/hate relationship with though this process, during our first visit mentioned almost off hand that we should go visit a Pediatric Endocrinologist (doctor who deals with growth). The GI doctor noticed, as everyone who meets Molly does, that she is small for her age. So for kicks we went to Dr. Maniatis, the guy to see for all your pediatric growth needs. The first visit is all about understanding Molly and how she grows. Being short does not mean anything is wrong, but it might mean it is worth looking into. So what we learned during the first visit is that while Molly is growing, is healthy and more or less is on a consistent growth curve, she may be growing at a rate less than her genetic potential. All that means is that given mommy and daddy’s height, she should be a little higher up the curve by now. Even then, this is all statistics and numbers and may mean nothing at all. The doctor suggested that we move along with a couple of blood tests to make sure nothing was up (he himself was doubtful there was an issue). What could have been up? Growth Hormone Deficiency. But the likelihood of this? 1/10,000...no worries, right? Have you met Molly?

So the big HGH (Humane Growth Hormone) test is quite the ordeal. Because HGH is only really produced at night, the body has to be tricked to create it so the concentrations could be measured. So during a 4.5 hour long test at the Dr.’s office, Molly sat with a needle in her arm and had injections of, let’s call it “Magic Stuff” while periodically drawing blood samples to measure HGH levels. So we did this to cross it off the list, did not give it a second thought. Then the call came two days before Christmas. A normal HGH level reads looks like 10 ng/mL. Molly’s? 3...just 3. Molly has a VERY SEVERE Growth Hormone Deficiency. Unbelievable.

Okay so what does this mean and why do we care? Molly’s pituitary gland is not producing enough of the hormone used to help her grow. Her bones, organs, muscles, you name it...all of them need this hormone to grow. So if she is not getting it, does that mean she is just going to be short? Yes, and she could also have teenage osteoporosis, cardio-vascular issues, and a list of other scary conditions in the coming years. So now comes some follow-up testing including an MRI and another blood work test. MRI is to verify her pituitary gland (in the dead center of her head under her brain) does not have any tumors or other abnormalities. That would be bad news and mean brain surgery. Cut to the chase, she is all good there. She had to go under again for 90 minutes of imaging of her brain (which we have AWESOME pictures of) at Rocky Mountain Hospital for Children, but she did was a trooper and all went well. Her other blood test also came back good (measurements of her stress hormones). Now onto treatment.

The treatment of this condition is very solid. And we caught it early enough that she will catch-up and there should be no future issues. What is the treatment? It’s easy; one shot in the butt with HGH 6 nights each week until she stops growing...in ~14 years. OMFG. We have to give our daughter a shot pretty much every day for over a decade. Loving insurance right now...this drug costs a fortune and we are not paying a dime for it.

We had the first shot yesterday at the doctor’s office so we could be trained and know what to expect. The drug is shipped to us monthly in special automatic syringes with ice-packs and in a cooler. We attach a new needle every night, dial in the dose, and stick her before bed. Toss the needle, and every week toss the applicator. We are going to learn lots about medical waste.

Overwhelmed right now. Molly did not care for the shot. We all went to the training session to learn about this. We each got a shot so we knew what it would feel like. Even Caden wanted one so he could support his sister (how awesome is that!?). But it is going to be a long road getting her used to this. Hoping in short time it is just routine. Planning on taking lots of pictures over the next few months as Molly is expected to grow several inches over the next few months as she catches up. And mostly, we are hoping this is the single reason for all her issues (GI and otherwise). Some doctors say no way, others say definitely.

We will keep you posted! Today, Molly is 37.25 inches and 31lbs.

*Time Passes to 4/21/2015*

You might be wondering how Molly is doing with her shots? Well, she is doing much better. It can still be a struggle but as Molly always does, she is showing us how strong she is. The shots don’t hurt her much, but the medicine injected in her does. I had assumed she was over-reacting to the pain, but I no longer think that. One evening in Oregon, she let everyone watch her get her shot (usually a private moment). Grandpa Gerry, grandma Kay, Kristen, Shae, and us all watched and she bravely took her shot and used every ounce of her strength not to cry. It was the saddest thing I ever saw. And she is going to do this 6 nights a week for the next 14 years. Karma owes her…

And is she growing? She is now 38.25” and 34 lbs. Go Molly!!!

Say good-bye to short-stuff