Agita and angst

Lat night I injected Natasha correctly and was pleased that I had acted on my hunch and called the help line. Instinct is almost always right, dontcha know. And I was pleased that things went smoothly. In fact, I think the "dummy" injections, which a friend kindly referred to as placebos, hurt less than the ones with Genotropin, thus establishing in Natasha a new mindset that these really and truly are no big deal. As Kundalini yoga stresses so heavily, often our mind is our biggest limiting factor.

But I wasn't prepared to be hit with extreme guilt over having done it wrong. I don't really think it's my fault that I didn't know how to do it. I was given an incomplete training from both Miles and the insurance company. Nonetheless, if I'm going to inject my child I want to be doing it for a purpose, because it sure isn't the highlight of my day.

Moving on from here I will do it right. Moving on from here it will become increasingly easier and more routine. That's what they tell me, and I'm sticking with it. Unfortunately, no one has addressed the emotional factors. I guess I'll have to surf those waves as they come and try not to get bitten by too many sharks.

The answer is: NO

I called the Pfizer help line this morning and spoke to the on-call weekend nurse. When Miles the nurse taught us how to do the injections he took us through from when you attach the meds cartridge to the Genotropin pen all the way through the injection. This made sense, since it was our first time, the cartridge was not attached, etc. 

After that, you're on your own. You are left hanging about how to do the injections on a daily basis. Where do you pick up in the string of instructions? The DVD/website is not helpful on this, because it too begins when you attach the meds.

Cut to the chase: I have been giving Natasha injections but no meds for the last two nights. 

The good news is that she is getting more used to the shots, and they hurt less without the meds, which could sting a bit (according to the on-call nurse), gradually reducing the fear factor. 

The bad news is, of course, three days of injections wasted. I definitely felt no need for a dress rehearsal of these. Oh well. At least I know now. And am prepared in case she feels the sting tonight. 

Am I doing these right?

Day 4 and all seems to be going well. Except I'm not sure I'm giving these shots correctly. Nurse Miles and the directions from the company instruct you from when you have to attach the meds cartridge all the way to giving the actual shot. 

Problem is, you only have to replace the meds cartridge every 12 days or so. It seems logical that in the interim I would proceed from the step following the cartridge attachment, which is what I have done for the past few days. I doubt myself, though. I am going to call my Prizer rep tomorrow and make sure I'm doing what I should be doing. I'd have to have given my kid "dummy" shots.

On the positive side, today was really easy. Natasha let me give her the shot without the needle guard, which was much easier for me. She seemed pleasantly surprised with how painless it was. I hope I put the medication in her!

And, she was starving at dinner time. Natasha is never starving. She's hardly ever even hungry. Maybe that's a good sign that this Genotropin is starting to work. Sending good thoughts into the universe...

New blog in town

Natasha just started her own blog. Check it out: www.genogirl.blogspot.com. Actually, give her a day or two. I wrote the first post just to get her started.

Two shots down... years to go

Two shots down. Tuesday, say one,  was pretty dramatic.  I picked Natasha up from school and she cried for most of the 10 minute ride home. Miles was waiting for us when we got there, and Natasha continued to cry increasingly hysterically the entire time he was there.I concentrated admirably under the circumstances, all things considered. 

At that point I was feeling more businesslike that emotional, actually. Miles was required by Pfizer to read a script, and then I (in true therapist style) mirrored what he said in my own words, rendering the instructions more understandable. All of this led up to the actual injection, during which N tensed her muscles so much it was a lot harder than necessary. But we got it done.  

Yesterday was day 2. The "starter kit" with the Sharps disposable needle container, extra needles, alcohol swabs,  handy dandy travel case, and various information was still on the table from the night before. Miles had commented on how many extra needles they had sent us, so while trying to figure out where to put all this stuff I spontaneously decided that, if I was going to be reassuring Natasha that this was all no big deal, I ought to have a clue what I was talking about. So I opened up one of the needles and stuck it in my leg (no meds attached). I literally did not feel a thing, and I'm no big macho shot-getter. 

That definitely made a difference last night for shot two. I told Natasha what I had done and asked her to please, please try and relax, be cool, not make such a big deal about it. She put an ice pack on for a minute, took it off and I did the dirty deed. She actually laughed afterwards, asking incredulously whether "that was it?" Okay, she said, I admit I was really wimpy last night because that wasn't bad at all.

Sigh of relief. Maybe this actually will become not all that different from brushing teeth--just another part of our kind of nonexistent bedtime ritual. We remembered to measure her, too. Now I have to start sending out good thoughts and hopes into the universe that this whole Genotropin experiment is actually going to work. 

We start Genotropin injections tomorrow

Lots of nervousness around here. I have caught Natasha crying in her room or off in private places a few times. She's also been an on-and-off raging bitch, about which I am cutting her a little slack because (alas) that is often how I express my own anxiety so, while not pleasant, I can relate. Plus we're all pretty beat from a few extra late nights thanks to Passover seders on Saturday and Sunday.

Tomorrow is the day that will change our lives. Let's hope for the better.

I called back

Miles is set to come to our house Tuesday at 4 pm. I was pretty calm scheduling the appointment but I'm getting a nervous stomach writing about it right now.

In response to my question about whether we will begin injections that day, Miles made it very clear that Natasha will be administered her first dose of Genotropin, but not by him. He will guide us through the process but cannot touch the patient. That's what he said. Cannot touch the patient. She can give it to herself or we can give it to her but he cannot touch her. Home healthcare sure is friendly these days. I kind of want to push her and make her bump into him and see what happens if he, you know, touches her. 

But it's probably better that she or I have to do the dirty deed right from the start, since we will be the primary injectors anyway. Wow. This whole thing keeps getting more and more real. 

I guess the good news for Natasha is that I will let her miss Hebrew school, which is from 4:30-6pm. See. There's always an upside to everything.

Miles the nurse called

...and although I was anxious for him to call yesterday, I hesitate to call him back. Setting up his visit will make this whole thing all too real.

Got the goods

Our starter kit arrived today, complete with needles, alcohol swab, "pen," how-to DVD, refrigerator-safe storage case and a random backpack apparantely included to make the kid feel like all of this is going to be fun, fun, fun. It's not working in our house.

Natasha is aware of what is going on, aware that the shots are going to begin sometimes next week, and is for the time being living in denial. I know she doesn't want to watch the DVD, because the video is available online and she didn't want to see it there. I haven't pressed the backpack on her yet.

Put in a call to the insurance to let them know we got the starter kit, and now await a call from our nurse named Miles. And then we're off...

Hubris

I spent a lot of time doing yard work today and dealing with my ego. Last night I surfed the internet more extensively than before-- and I thought I'd done a pretty extensive search-- and finally found some message boards for parents of children on Genotropin.

Wow. Parents talking about things like six month old children who aren't growing at all but are too young for treatment. Lots of scary stuff. Made me so very grateful that our issue is, in the realm of issues, so very, very small (ha ha. Get it? Small? Growth hormone?)


I realized that it is kind of absurd, my rushing to start a blog as if no one has ever gone through this before. I imagine there are some out there. But damn, they are hard to find.

So here it is: the blog of the experiences of a family whose older daughter is in a not terribly dire situation which is nonetheless serious enough to merit injected hormone treatment.

Tomorrow the starter pack is slated to arrive, at which point I call back insurance to go over a checklist. Theirs, not mine.

My child on Genotropin

Today my husband and I made the decision to begin our 10-year old daughter Natasha on Genotropin, a form of human growth hormone. If she reacts favorably, she will inject the drug daily for the remainder of her growth period. Given that her current bone age is roughly 7 1/2 years, this could be upwards of 5 years.

In my web-based information search I found no personal stories of anyone who has used this drug or given it to their child. Therefore, I decided to begin this blog. In it I will chronicle our experience, including the nurse home visit, which augurs the first injection, our experiences with the Pfizer Bridge program which makes the drug, effects, side effects, emotional effects– whatever comes up. I hope this will help others and possibly establish a forum for parents who make this scary decision.

Background:

A few years ago I noticed that my daughter was very, very small for her size. I am only 4′9″ and my husband is 5′8″, so we never expected her to be a giant. Nonetheless, she seemed excessively small compared to other children. Additional cause for concern was the fact that I am shorter than either of my parents, neither of whom is very tall, which indicates a possible hormone deficiency in my background. As puberty was not that far off, my gut told me we should check this out.

An endocrinologist from Denver Children’s Hospital began tracking Natasha’s growth. After a year and a half it emerged that her bone age is delayed by a few years (good), but that she is not growing at the pace of a normal child (bad). Thus, every time we visit the doctor her projected height–based on parental actual height– falls. Upon the doctor’s recommendation, we applied for insurance coverage.

Last week I found out we were granted coverage. Today three months worth of the drug arrived, along with a tamper-safe needle disposal bin. On Tuesday we will get our “starter kit,” which among other things contains the injection device, designed to look like a pen. Somehow I don’t think too many kids are fooled by this. I will also be contacted by a nurse, who will come to our home and teach us how to inject our child.

I visited the Genotropin official site and cried through the video demonstration of a young girl preparing the drug and injecting herself with the pen. She seems to think it’s no big deal but, then again, that’s her job.

To me right now this is a big deal. I go back and forth between being very calm and completely freaked out. My husband has been out of town all week and I am loathe to talk about this to her without him, so at this point all she knows is that we have been approved by insurance. So far she took it pretty well. I think is beginning to be conscious of how short she is and wants to grow. Over the weekend we will broach the topic in detail, talking about the nurse coming etc.

If anyone has any experience or comments or knows of any other blogs about this, please share.