Posted by: Vallere | June 4, 2010

Good news and bad news

Well, I’ll start with the good news. A couple of days ago, hubby got the official offer for the job in Rockhampton, Australia. It really looks like the perfect position and we are incredibly excited! (or at least we WERE, but more on that in the “bad news” to come). The money is right, they’ll cover our round trip tickets, house, utilities (minus internet and long distance phone), and car (minus petrol, of course). So we’ve gotten the papers to get our passports and are expecting a contract in the next week or so. Everything sounds like a go!

Except for the bad news…

We had an appointment with a pediatric endocrinologist today for our 2.5 year old son, Zollie. Zollie has always been tiny – even though he and Ian were both born at 39 weeks gestation, Zollie was a full pound smaller. Not so small as to indicate some intrauterine issue (he was 6lb12oz – fairly normal sized baby), but to me he seemed itty bitty after Ian, who was 7lb10oz (and almost 3 inches longer to boot). Zollie was always a ravenous nurser…he nursed all.the.time. He had no interest in solid food till he was almost a year old, but he was nursing every 2 hours or so, even as a todler, so I was never concerned about his nutrition or intake. Our pediatrician, however, was. Zollie fell lower and lower on the growth charts and I was admonished to push solids, push high calorie foods and that he NEEDED something other than just my milk. I knew this wasn’t true. If Zollie wanted to eat, he would. You can’t FORCE a kid to eat – especially one who is perfectly happy nursing. I knew my milk was fine – I had nursed Ian exclusively for months and he never had any growth issues.

So we would try to introduce new foods to Zollie, and he would push them away and ask to “nu-nu”. Eventually, sometime around his first birthday, he took an interest in solids. He became a great eater – usually eating more than Ian, in fact – but still loving his nursing time. He’s also continued to be very low on the charts. He had a curve, but it kept getting lower and lower. At his 2yr check-up he was between the 1st and 3rd percentiles in height and weight. Our ped wanted to see us back in 6 mo. I made sure my hubby could go with me to this appointment, so a few weeks ago we went back. He was at 1st percentile and our ped suggested we have a consult with an endocrinologist to make sure nothing underlying was going on.

After deciding that this was, most likely, a fishing expedition, hubby and I consented to some blood work and a bone age X-ray, saying that if those didn’t show anything we would just leave it alone and if he was short, he was short. Period. So over the past 2 weeks we had a blood draw done that looked at about 12 different hormone/etc levels and the X-ray. We were able to take a CD of the X-ray home with us, so we looked up comparison X-rays online and decided that Zollie’s bone age was at least 6 months behind his chronological age. This sounded like a GOOD thing, because it could just mean he was going to be a late bloomer and would catch up eventually. We were pretty confident after that.

Until this morning. When we had our appointment with the pediatric endocrinologist. Who said that Zollie’s IGF-1 levels are 2 standard deviations below normal. IGF-1, or insuline-like growth factor 1, is produced by the liver in response to growth hormone being produced by the pituitary gland. So, low IFG-1 levels, along with his short stature and mid-face hypoplasia (ie, his midface is proportionately small, giving him a cute button nose and tiny mouth, which is adorable and angelic looking, but also a symptom of GHD, or growth hormone deficiency) led the doctor to say that we need to have his growth hormone levels checked and that he “wouldn’t be at all surprised” for a diagnosis of GHD to be confirmed. So in August we go to the hospital for a “stim” test, where he will have an IV inserted and be given chlonodine and glucogon given to him to stimulate his pituitary to make GH, and have the levels tested over a period of a few hours. If his levels are below normal, then we will get an MRI to make sure his pituitary looks normal and isn’t injured. And once GHD is confirmed we will be looking at daily shots of growth hormone for the next 16-18 years.

Talk about a punch to the stomach. Giving my baby, who doesn’t even receive vaccinations, daily shots? For YEARS? And the cost…unbelievable. Until puberty we’d be looking at $11,000 a year, and during puberty, when the dose will be increased, $100,000 a year. Oh. My. Word. This pretty much means that hubby will have to work for a state job at least until Zollie is grown if we want any hope of having insurance. It also could very likely mean that we won’t get to go to Australia after all, because we’d need private insurance for that, and the thought of how much that could cost (if we could even get it) is staggering.

So we got a whole 2 days of utter excitement about Australia, only to have the rug pulled out from under us today. I’m just utterly crushed. I mean, logically I know it could be SO much worse. I know there are thousands of parents out there who wish they ONLY had to give their kid a shot every day in exchange for an otherwise typical, healthy child. I know that even something like diabetes would be a worse diagnosis. But I’m still crushed. Is he going to hate me for having to give him shots every day? Is this something that is hereditary and I’ll have to worry about our future children being affected by it as well? Am I a horrible mom for brushing his small stature off for so long when we could have diagnosed him sooner and maybe helped him grow a little bit taller in the end?

I do really want to go back to the pediatrician and say “SEE! I TOLD you my milk was fine! I TOLD you he was getting PLENTY of nutrition! WHY did you have to make me spend months and months doubting myself and my mothering when it wasn’t my fault at all?!” I feel very vindicated in that sense. And hopefully, if it IS GHD (which, I’ll be shocked if it’s not at this point, or at least IGF-1 deficiency, which would be a similar outcome), he’ll have (literally) outgrown it by the time HE needs to worry about having his own insurance. At LEAST it’s not a lifelong, chronic disease.

Everything has a silver lining, right?

Advertisements

Responses

  1. Been where you are because I went through this with my daughter. She started shots at age 5. Today she is 28 and thanks me for being a strong mom. You can do this! It is a challenge but always remind yourself that we are all blessed that we have options! They can get better! If you want to read my story…reads very much like yours….here you go: http://www.magicfoundation.org/www/docs/929.711
    Best of luck! You are a great Mom!!!


Leave a Reply

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

WordPress.com Logo

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

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s

Categories

%d bloggers like this: