Monday, July 1, 2013
Human Growth Hormones
So, it's official, Jax will start growth hormone treatments once the drugs are approved, which will take awhile - maybe not until the end of summer until we actually get them. The appointment was so late tonight and there were three docs in the room, and the main specialist who is the partner of the last person we met literally looked at the rate of growth/weight of the boys from the past 6 months and started with Jax saying... "Yeah, not only did his growth not 'speed' up, but it's almost even a little slower if not the same. He is definitely a candidate. So, do you want to do that?"
I guess he knew we spoke at length with the last doc, but it just seemed SO flippant sort of! I made him show us the charts on his computer and talk a little more about it. He showed how Jax is so far off the normal chart, that it's almost impossible for him to 'catch up' on his own, but it's not medically necessary.
I asked to review Brady before we make the final decision (even though Jay and I did agree in advance what our decision would be depending on today's results) and Brady's growth wasn't great or bad, but he IS on the charts. He said Brady 'could' receive the treatments, but he does actually show a possibility to reach a normal height without the treatment.
So, we decided that Jax will receive it and we'll watch Brady with our pediatrician, and even the specialist said that he'll take a peek at Brady when he sees Jax every 6 months too. I said it would be crazy to see Jax overgrow Brady, and that didn't feel right either, but the doc said he didn't suspect that would happen. But it 'could', so we'll watch and see.
Brady is 3" and 5lbs more, which doesn't sound like a lot, but in the Endocrinology world, I guess 3" is a lot. Especially when the 'tall' kid is in the 5th percentile on the chart. He said Jax was so stunted at birth and then his nourishment has been severely compromised over the years given his GI issues. Exactly what the first specialist said, so it was nice to get a 2nd opinion. He said it's just going to help him make up for he was supposed to have.
(Brady - 31 lbs, 40", Jax - 26 lbs, 37")
When he gave the boys' their physical evaluations, he lifted Jax down from the table and said, "Wow, he is really tiny"... um, yeah, hi, hence we're here. We could tell he wasn't comfortable with Jax's lack of weight gain, but I told him we see the entire feeding/dietician/GI team for that, and it's obviously his biggest challenge. Hence... the stunted growth as well... boo.
When the approval comes in, and the order is sent in (we have to get it from the hospital lab) we then go in for 'training' on the administration of the drugs. The doc said Jax may need it for a few years, or even until he's a teenager. Since he doesn't have a growth 'disorder', we can stop at any point and test his growth without it for trials if we want too, so at least we have some control over it. That surprised me though. I think we both thought it was just for a year or whatever.
The boys started slight colds at the end of last week, and it's kicked Jax's asthma into play since Sunday. He had a rough Sunday night with vomit and low pulse-ox, so I actually brought him into the pediatrician between my allergy appointment and the later Endocrinology appointment (and Jay brought Brady to speech therapy) so it's been a run-around kind of day. Jax's lungs are ok and we just need to treat with the Albuterol every 4-6 hours until he clears it. The doc then said she will discuss Jax's asthma course at his physical with us in a few weeks because she is really thinking of having him see an Immunologist/Pulmonologist and change his drugs up. He's on the highest dose of inhaled preventative now, and he clearly still has issues. The doc said she will refer him to the allergist that I actually saw today for myself. I really liked him (hopefully my new cocktail of drugs work) so we'll see where that goes.
Crazy next few days of getting things done while Jay is on a trip and then we're off to the Garber Cottage for a long weekend with the kids. We could all use some downtime together!