Growth hormones

After careful consideration and discussions, we finally decided to start giving the girls growth hormones. The girls' endocrinologist assured me that growth hormones seldom have negative side effects. The most common is headaches, but she said that those are easily remedied by stopping the medication for a few days until the headaches are gone. Then the medication is started again at a lower dose and then slowly work back up to the dose needed. Another side effect could be that the child grows so quickly that the bones can't keep up and could break a hip/pelvis, etc. She said that is very rare, though and she's never had a patient with that problem and Riley hospital had only had 2 patients with that problem in all the years they've been doing this.

The girls have not really had any "catch up" growth since they were born. Meaning that although they have grown at a steady rate, they haven't had the catch up growth that most preemies have had by the age of 2 yrs old. The endocrinologist was comfortable waiting a couple extra years and just watch them to see if they might have had delayed catch up growth. Since we hadn't seen much improvement, she decided that she would have a x-ray of their wrist/hand. The doctor can sometimes tell if a person has delayed growth (and might catch up on their own later) by looking at how the bones in the hands are spaced. After looking at the girls' x-rays, she determined that they don't appear to be "late bloomers". The doctor then told me that at the rate the girls were growing, they would likely only grow to be 4 ft 10 or 11 inches at best. That's short!! Granted, I'm not tall...and daddy has aunt's that are that height, but it isn't easy for them - and at that height a person is technically considered a dwarf!

Since it appeared that there wasn't really wasn't a good reason NOT to try growth hormones, we decided it was time to give in and see what happens. Needless to say, the girls were not pleased with our decision because this meant that they would have to get a shot each night before they go to bed. I think they would have handled the news a little better if they hadn't just been traumatized by getting their immunizations for kindergarten a few months prior (4 shots for each kid) and then flu shots after school started. This year they were terrified to get their immunizations. I literally had to pull Alexa, kicking and screaming, from underneath the table and forcefully hold her down so they could give her the shots. (The memory from the epipens was still so fresh in her mind and she wanted NOTHING to do with the shots!)

We started the growth hormone shots on Oct 1st, and the first couple days they fussed about the shots and really didn't want to do them but it didn't take them long to realize that they weren't too bad and now they take them like champs. I don't really know what is considered normal for them to grow while on this medication, but I think it's helped them quite a bit. According to my home measurements, they have grown around 2 inches each since we started and that sounds pretty good to me! They've had little to no side effects from the medication as far as I can tell. Alexa was having headaches for a while, so we took her off the medication for a few days (which she was strangely sad about), but I think it was caused by a cold/sinus infection and not because of the growth hormones.

Now I just hope that insurance approves the medication because I'm told that this is expensive....around $10,000 each year - PER CHILD! The doctor said we have good insurance and she didn't think we would have any trouble getting approved. Her office submitted the paperwork to a program called Pfizer Bridge. I don't know much about it except that they help get everything set up, sent out the nurse to train us on how to administer the shots, etc. Apparently they also have a program that provides medication while waiting for insurance to approve it. The representative with Pfizer said that our doctor asked for us to be considered for that program and wanted to know if we were interested. I asked how much it cost and she said there was no cost to us. So, this program has been providing us with the medication, supplies, etc since September (we received our shipment in Sept, but didn't do the 1st shot until Oct 1st) while waiting for insurance to approve us. I just hope that everything gets worked out with insurance soon because I'm not sure how long they will continue to send us this stuff for free!

I think we are on the road to approval as we speak though. The representative that I've been talking to at Pfizer Bridge said that there were going to be changes to my insurance after Jan 1st and she thought that we would have an easier time getting approval. I got a call last week from our insurance telling me Emily and Madison have been approved. Alexa's was still in process, so hopefully she will get approval soon too. Even with insurance approval, I don't know for sure how much we will be expected to pay for copayments or deductables. Whatever it turns out to be, I hope we can afford it!

I'm looking forward to the follow up appointment with the endocrinologist in March. I'm anxious to hear if she thinks the girls are responding well to the medication and to see "officially" how much they've grown.