Progress marches on

My daughter continues to grow. She has grown about an inch at least in the last month and a half. I know some kids grow six inches overnight but we never fell into that category.

She also continues to adapt to the shots. When we first began this process we mocked the girl on the instructional video who cheerily says that the shots become "just as easy as brushing your teeth" (or something like that. Definitely mentions tooth brushing). But you know... it kind of is true. That hardly happens the first day or even the first month, but it does become so routine. Doesn't take very long, either. A few months ago I was cooking and set the kitchen timer for 3 minutes. During that time I got out the shot and its accoutrements, set it up and administered it and the buzzer hadn't yet gone off.

I still wish we didn't have to do this at all. I still wish there were 80 year olds who had started doing Genotropin as kids and were healthy, strong bones, cancer-free etc. But so far so good, given what we know.

Bigger shoe size

For the past few years G-girl has worn the same shoe size as her younger sister. Yesterday we went shoe shopping and G-Girls feet are bigger. Like, a lot bigger. Once again, hate doing the shots but we are loving the results.

SUCCESS!!!!!!!

We visited with our endocrinologist last Wednesday. After the usual hour and half in the waiting room, we finally saw the doc. Results? Good news!

Childhood growth is measured in centimeters of growth velocity, or how many centimeters the kid grows over the course of a year. Before we started the Genotropin Genogirl was growing at a rate of 3.9 centimeters a year, as measured in March. Now, 6 months later and 5 months into the Geno shots, she is growing at a rate of 7 centimeters a year.

Much happiness and a big, big sigh of relief. Doesn't make the daily shots any easier (especially with a higher dosage to correspond with G-girls increased stature) but it definitely makes them feel more worthwhile.

Visiting the Endocrinologist

Today is our first appointment with the endocrinologist, Dr. N., since G-Girl began her shots. Her progress as measured on our wall chart looks pretty good, but I am eager and nervous for the "official" update.

Generally G-Girl has hated visiting Dr. N, but I assured her that the worst is over. I mean, she's already getting the daily shots and there's nothing worse than that. At least I hope not. More later....

Will it ever get "Normal"?

Last night G-Girl was begging not to have to do her shot. "Can't I just go to sleep and we can start again tomorrow?"

Sometimes it feels like an effortless part of our routine. Other times it doesn't. Poor kid.

Sigh. I know it doesn't feel good (although it usually doesn't hurt THAT much). I wish we could stop doing it, too. I suppose we can--no one is forcing us to do these shots. But we made the decision to do them in her best interest.

2 weeks from today we have our first appointment with the endocrinologist since we started the shots. We can always re-evaluate based on her progress.

Hurting

Last night G-girl's shot hurt so much that she was willing to take Motrin to make it feel better. She's the kind of kid who would usually rather writhe in agony than take any form of pain killer. I'm not sure what I did differently. But I sure felt a lot worse afterwards.

Forgot the shot... again

We were in lovely Aspen CO this weekend. To make a long story short, I slept really poorly Friday night. Was supposed to do a duathlon on Saturday morning but it got cancelled because of the weather. Did a really punishing workout at the Aspen Rec center instead. Had a lovely glass or two or three of sake on Saturday night-- who can count with those silly thimbles. Came back to the hotel, watched some Olympics (USA! USA!) and then gave in to my exhaustion. At some point in the middle of the night I remembered we hadn't given G-Girl her geno shot.

Sigh. It wasn't the first time and it probably won't be the last. Whaddaya gonna do. Try better to remember, I suppose.

Changing the stupid cartridge

About every 2 weeks the meds in G-Girl's Genotropin pen run out and I need to change the cartridge. I have done this a handful of times already so you'd think I know what I'm doing. Well, I don't.

It's not as easy as it seems. Well, it is easy but there are a bunch of steps and I am still not familiar with them all. This must be a common problem because the company includes a step-by-step cartridge changing "placemat." It's pretty helpful-- if you have it. We no longer have ours because it didn't make it home from the infirmary at summer camp. I called our Pfizer Bridge representative, who was pleasant as always (no sarcasm at all, she really is nice) and a new placemat should be in the mail. In the meantime...

I botched it. Again. I got it to work reasonably well but something feels kind of off. I hate injecting my kid with a pen that I may have loaded incorrectly, but I am pretty sure that I mixed it correctly and she's still getting the correct dose. It looks like there's a lot more air in there than there should be, even though I did the remove air tap tap maneuver. Sigh. It's always something. If it's not one thing, it's another. (Credit to Roseanne Roseannadanna).

Which kind of hormones?

My daughter is 10 1/2 years old. That means she is a pre-teen. A tween. A young lady. Whatever you want to call it, lately she's been being obnoxious. Which leads me to wonder... which kind of hormones raging around in her body are to be thanked for this? Is it the Genotropin? Is in sex hormones or puberty hormones or whatever you call them? Maybe a little of both?

Maybe she's just acting this way because she is still tired from camp and missing the freedom she had there. Who knows. In either case, I'm glad she's back but could use to lose the attitude that seems to have accompanied her home.

We were shopping for new underwear the other day and I asked her if she thought she needed a bra. She asked whether I thought she needed a bra. I answered honestly, which is no, she doesn't need one at all. But if she wanted one I'd get her one. It wouldn't surprise me if sometime this year we make that leap.

She's ba-aack

Yeah, so G-girl is home and our house is back to its normal state of chaos. This means there is more mess everywhere (and I do mean everywhere), the kids are alternately fighting tooth and nail and then getting along great, there is more singing in the house (which sounds nice but Jonas Brothers and Miley Cyrus are not my top picks) and yes, I am back to giving daily shots.

Overall, much less traumatic/dramatic than it might be. I think the major trauma/drama was limited to the very first time. I know G-girl was nervous about having the nurse inject her at camp, but I think after the first time that became no big deal as well.

Two things that helped:
1. one of her counselors had to take meds, so they went to the infirmary together after dinner

2. (and this is a biggie) a boy 2 bunks ahead of her also got Genotropin injections. When her cartridge needed changing and the nurse was unsure of how to do it, they called him in. He helped, they did their shots together. (oy vey. That sounds like group shooting up. Anyway...) Where I was going with that is that on many levels the experience was normalized. Didn't become more pleasant, but definitely became more normal.

It still makes me sad that giving my kid shots on a daily basis is becoming normal. But I won't go there today.

Genogirl is coming home

G-Girl has been at sleepover camp for the last two weeks. For the first few days I almost missed doing the shots. Not in the classic sense of missing something, but I felt their absense. It had become something so imortant in our every day that I forced myself to always remember to do. So when she went to camp I still thought about it every day... "don't forget to do the shot."

Then I realized how much I didn't miss it. I miss my kid, but the time surrounding giving her shots is always surrounded by some level of tension and some level of fear that I am going to hurt her. Neither of those things is fun.

Then I kind of forgot about giving her shots. It was neither something I missed nor something the absence of which I welcomed. It just went back to normal.

And now she comes back today. I wonder how things will change now that she has been getting them for 2 weeks from someone else. Someone who was trained in doing things like giving shots.

Shots at camp

Breast Buds

One of the side effects of Genotropin is that it can bring on early puberty. Natasha is 10 and 4 months. She has been getting injections for almost two months. When she started the shots she was completely flat chested. Now she has the beginning of breast buds. Is this because of her age or because of the drug?

We don't see our endocrinologist again until early September, although of course I can call her before that. Natasha has grown at least an inch already, so it is not surprising that she might have grown in other ways besides height. Who knows what is going on with all these added hormones in her body. But breast buds? I'm not sure I'm ready for that.

She'll get a break

Genogirl doesn't know this yet, but she's going to get a 2-3 day break from her shots. We are going to Alaska for 2 weeks starting on Saturday, a few days of which we will spend camping in Denali National Park (assuming the weather cooperates).

I called Pfizer and explained that we'll be in the back country without access to refrigeration, and asked for advice about how to store the meds while we are camping. They said that they have no information about the stability of the drug outside the recommended 36-42 degree range.

I find this kind of strange. In fact, I doubt that they have no information about its stability outside the proscribed temperature range, given the amount of research I assume they have done on this drug. Or maybe they haven't done as much research as I would hope they would have.

So anyway, I called her endocrinologist, who basically said to leave the stuff in the fridge at my aunt's house and just not do the shots for the few days we are away. I haven't told Natasha. I wonder how she'll react. I imagine it will be a relief, but at the same time I know she is happy to be growing. I'll report back...

I had to sit down

An unexpected package arrived from Pfizer today via FedEx. I was so thrown that I went weak in the knees out of anxiety and had to sit down. The funny thing is, I don't even know what I was nervous about.

Turns out they want me to return the supposedly malfunctioning pen and sent a whole bunch of pre-paid packaging in which to do so.

On the good news front: G-Girl has definitely grown in the 4 weeks since she has been taking this drug. I measured her day one and my husband measured her again at a 2 and 4 week interval. At each measuring, she grew. Our measurements may not be exact, but there is no question that there is progress. Hooray! All is not for naught.

Guilt trip

You gotta look at Genogirl Grows On today.

Love songs

So Genogirl has been singing love songs to her daddy on her blog. That is very nice and all, but who has been there every day for her for the last three weeks? Who is there every day when she comes home from school? Who makes her lunches and buys her clothes and helps her in the shower and volunteers at her school and takes her to yoga and... well, you get the picture.

I guess the plight of a mom is to do it all and be taken for granted.

Her head hurts

One of the main side effects of Genotropin is headaches. Natasha is suffering from a headache tonight. I don't use suffering lightly. She is not moaning in agony or anything, but she took herself to bed with a cool washcloth at 7:30, which is pretty unheard of. And she never gets headaches.

We are on full disclosure with this whole Genotropin thing. To that end, I told her that headaches can be a side effect, and that I want her to really keep me up to date on when she has headaches, what they feel like, etc.

I also need to keep things in perspective: not everything is tied to this drug. For example, I almost never get headaches and last night in the middle of Finding Om I had a killer headache and was pretty positive I had a fever, although I didn't have either by the time I got home. So maybe it's just a teeny virus or something going around.

Every little thing is suddenly bigger. My ass, tummy and double chin included.

Sing to the tune of the Who's Won't Get Fooled Again

Got the new pen.
Looks just like the old pen.

New pen coming right up

So I called the Pfizer help line to have someone walk me through the cartridge-change process. Genotropin didn't squirt quite so vigorously all over my kitchen table this time, but a whole lot more than one or two drops came out.

No one could figure out why this was happening. I suggested that pressure could be building because the meds are sent up to altitude. We are only at 6,200 feet but it can definitely make a difference in strange things, like yogurt occasionally flying out of the newly-opened container, or needing to make those side-of-the-box high altitude adjustments to baking. But I don't think the Pfizer people really gave that idea any credence. Their solution: send me a new pen.

Okay. We'll give it a try. Why not. I'm not sure how much the meds cost aside from our monthly co-pay, but the endocrinologist told us that no one goes on them unless insurance covers it because the cost is prohibitive. So I will play along and do my best not to waste any precious formula.

After all, if it's a contest between who I'd rather see grow, Natasha or the kitchen table, she wins hands down.

That time again

Last night's shot was kind of weird.

In preparation for each shot I attach a needle to the pen and turn the knob at the pen top clockwise 5 clicks to "dial the dose" to 1 mg, which registers by .2 mg increments on a digital LCD window. If the knob doesn't go all the way to 1 mg that means we are at the end of the cartridge, which I can kind of tell anyway because there is a clear part of the pen through which I get a sense of how much is left. In addition, the plunger that pushes a little bit forward after each injection has a numeric countdown on it, so I can get a sense of how much is left on a daily basis. It's not exact but it gives me an idea.

Anyway, if the dial doesn't go all the way to 1.0 mg I can just inject Genogirl with whatever remains and then change the cartridge the next day. Last night it only dialed to 0.6, which is fine. But when I went to inject her it didn't seem like anything moved. There was still the same amoung of liquid in the window, and the plunger was still in the same place. All the meds seemed to stay in the pen. I played around with it again but everything else was in the correct post-shot position. No idea what that's about.

It's kind of exhausting, always having to face something new and never being quite sure that I'm doing anything right. Well, not never. Some days go just fine. But there's always the possibility of the unknown cropping up, as it did yesterday.

In any case, I need to change the cartridge again today. I am going to call the help line and have someone walk me through it during the day when no one is around and I'm not tired or distracted or anything and see if it goes any better.

The good news is Natasha is taking this all really well. I was touched by how excited she was about getting her new pen covers, which provide "fun" alternatives to the plain color it came with. And saddened. Touched by how well she is incorporating this all into her life, and saddened that it has to be in her life at all. I mean, nothing about this is really very fun. Her excitement at the cool new covers (kittens! hearts! flames!) just underscore what a little kid she is, and it kills me that this has to be something that becomes normal to her and that "pen" covers are something for her to be excited about and look forward to changing. I'm glad for whatever can make it more bearable, but I'm so so sorry that she has to be bearing this at all.

This is one of those times I think I need to go count my blessings.

Her 11th shot

Last night was Genogirl's 11th shot. She said it hurt. And it bled a little.

We are all trying to normalize the situation as much as possible. I know she was not faking that it hurt. She said it was the worst one ever. I feel like the worst mom ever.

Is it because I botched changing the cartridge? I doubt it but I can't help but think that. What did I do differently? Did I not inject at exactly a 90 degree angle? Did I inject precisely into the site of a previous shot? Were her legs sore from her track meet earlier in the evening and so more sensitive? I know I shouldn't blame myself and yet of course my mind goes to that place.

We are both nervous about tonight.

Replacing the cartridge for the first time

I think I did it wrong. I tried to follow the instructions but when I went to check for air bubbles instead of a drop or two of the medicine flowing out we got kind of a geyser. Like, I think about 3 days worth of meds spouted onto my kitchen table. I guess that's what the Pfizer 800 number is for. Today is Sunday. I will call tomorrow. Or maybe I should wait until I have to change it next time and call and have them walk me though it. Or both.

Is there anyone out there going through this? Is anyone reading this? I had to make a batch of cookies and eat about 1/2 of them. This is really killing me. Both the shots and the fat intake.

Getting easier every day

Last night Natasha let me stick her in the booty for the second time. No butt-clenching, either. Went really smoothly and quickly.

We are both getting more confident about this: she that it doesn't hurt all that much, me that I know how to do it. From my side, that allows me to do the injection much more efficiently. In fact, the other day I was cooking dinner and set the kitchen timer for 5 minutes. Just then Natasha decided she wanted her shot, so we did it. And I was back in the kitchen with 2 minutes still on the clock. She was pretty impressed when I pointed out that the whole thing had taken about 3 minutes, start to finish.

In a few days the meds cartridge will run out and I will need to replace the Genotropin cartridge. As Roseanne Roseannadanna said, "it's always something. If it's not one thing it's another."

Wow. That was fun. I haven't quoted Roseanne Roseannadanna in a while!

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.