Health Updates

Here are some updates regarding health in our little family. It’s long and there aren’t any pictures, but I felt like this should be documented.

Rob: Last week he had six fillings replaced. Cavities had developed underneath his old fillings. His mouth was so sore afterward! He is scheduled in a couple of weeks to have a bad tooth extracted. He will probably need a bridge put in after that. Not fun and it’ll be expensive but we’ve been putting it off for a couple of years now. It’s time!

Julie: Nothing new. Thank goodness!

Madeleine: Healthy as ever! She has only gotten sick 2 or 3 times her entire life!

Caroline: I’m a little confused as to what to do with her. She is still underweight and her pediatrician is still worried about her. We finally got into the endocrinologist to have her looked at and tested and Dr Simard told me she is about 0% worried about her. She didn’t even bother getting labs done. So, do I believe the doctor with the lab results or the specialist who doesn’t get so worked up about children who appear to be obviously healthy? I’m wondering if I should talk to Dr Wonnacott and tell her what the endocrinologist said and if she is still worried, they can have a conversion with each other and decide together if there is anything to be concerned about. I just want to be sure, especially since a persistent doctor caught Nate’s condition early.

Another note on Cara: The pediatrician told me she’s “verbally delayed” and if she doesn’t make major strides in the next 3 months we’ll probably need to see a speech pathologist, etc. The endocrinologist told me the pediatrician is crazy, that Caroline is obviously not delayed in any respect. Either way, Cara has made some progress in the last couple of weeks. Her really clear words are mom (which she yells constantly), dad, uh-oh, ow, and…well, that’s about it. Her words that we can only understand by way of experience are please (de), blankie (zha-y), Nate (nh), Madeleine (ngnh), hello (ya-ya), and there (deh). The rest of the time she just screams. Yeah…..not that great for a 1 1/2 year old.

Nate: First, his hearing. He had an ear infection in December. He has a high tolerance for pain so he never tells us anything until something is really bad, in this case, a burst eardrum. After a few rounds of antibiotics and sudafed, he still has fluid in his ear. He says he can hear and never complains about it, but it should sound like he’s underwater. We might need to take him to an ENT to see what else we can do to drain his ear.

Now, about his hypopituitarism. Over a month ago he started complaining about pain in the middle of his feet and the palms of his hands. I knew that I was supposed to be watching for pain due to the possibility of him growing too fast with his human growth hormone injections so after him crying about it on and off for a couple of weeks, making sure it wasn’t just him being weird, I called the endocrine nurse. She told me she didn’t think it had to do with his dosage amount but to be sure, she had us take him off the shots for a week (which was perfect because that was the week of our vacation). After this break we were to start administering his shots again, but at a half dose of .6 mg 5 days a week rather than 1.15 mg 5 days a week.

All during the week, regardless of how much we walked, Nate never complained about his feet hurting. When we got back, we put him on his half dose and 2 weeks later was his quarterly appointment with the endocrinologist. After vitals and a checkup, she did some calculations and decided that she wanted some new labs run, specifically Celiac Test (TTG), Growth Labs, and Thyroid Labs along with a Bone Age X-ray. She mentioned that there are some studies being done in Europe on the adults who had taken human growth hormones (hgh) beginning in their childhood. Enough time has finally passed to start seeing the long-term results, benefits, and drawbacks. She said they are finding out that those patients have a much higher possibility of having a severe internal hemorrhage. That’s serious! So she wanted to make sure that Nate was still needing the hormone, especially since he was showing signs that his pituitary gland has kicked in, which is rare, but a higher possibility if the condition was caught and treated early, which it was.

We had been praying and asked for others to pray that his results would show that his pituitary gland was now producing more growth hormone on its own. Have I mentioned how rarely this occurs? Well, it’s rare, especially for a 6 year old! This would be a huge blessing. Obviously, Nate hates getting a shot every night and Rob and I obviously don’t enjoy the routine either. Plus, we would rather not give him any drugs if he doesn’t really need them. Then I can’t even mention the cost of the medication and the hassle of insurance that we go through on a monthly basis. So, we prayed.

The results and recommendations came last Saturday. Her note said, “In light of normal growth rate of 1.3 cm/3 months and normal growth factor levels I recommend no change in GH dosing.” This means that although Nate can’t go off the hormone, his dose has been officially cut in half from what it was a couple of months ago (from 1.15 mg to .6). This is a wonderful blessing that we are thankful for. 1-The smaller dose is much easier to administer and less painful for Nate to receive. 2-We won’t go through the prescription so fast which cuts down our costs significantly. 3-There is still the possibility that Nate will literally outgrow his need for the medicine altogether.

He will never be tall, at the very most 5’9” with growth hormone treatment but probably more like 5’6” just like his dad. But without the boost he would have maybe reached 4’11” if he was lucky. Then there are the many other side effects since that particular hormone doesn’t just control growth, but a number of things. Some of those side effects include infertility, depression, major mood swings, inability to keep warm, and others.

We’re grateful for his doctors who have helped him since he was 18 months old. We’re grateful that his body is making strides in healing itself. We’re grateful for Nate’s courage every night when he lays on the floor, drops his pants, and holds his breath to get his poke. And of course, we’re grateful for a Heavenly Father who loves us and blesses us.

If you want more information on Hypopituitarism, here is a wonderful explanation.

One thought on “Health Updates

  1. Wow, you guys have been through alot! So glad to hear Nate seems to be on the upswing. You both are incredibly strong parents!!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s