Endocrinology isn't the answer

I got a phone call from the endocrinologist last night. She said everything from Liam's blood work up looked good. All the function tests they did of his thyroid, pituitary, etc looked fine and within normal limits. The check of his growth hormones looked good and within normal limits too. The only one that was low was his cortisol level but even with it being low, it was still at the low range of normal*. 

It was kind of a big let down to have the results all be normal. 

Two different Dr.'s have mentioned trying Liam on growth hormones because they've seen it do some cp children good when it comes to low trunk tone. One little boy who lives near us was a lot like Liam (supposedly, I don't know as I've never met him) and after going on the growth hormones he is now able to sit a year later.

I had asked the endocrinologist about trying the hormones when we were in the office. Not unless he was deficient somewhere would they use it. She said she would ask around to see if anyone else knew if it was indicated for low tone in cp. And when she called last night she said that the Dr.'s she talked to said no as well. I can understand that. It isn't like he's deficient in his hormones to need synthetic ones. But we'd been told it might help and told to check it out.

I was just hoping that would have been the key for helping Liam. 

I was hoping he could just take a pill and it would all go away.

*The cortisol one didn't surprise me. Cortisol is released in response to stress. And Liam's a pretty laid back kid.

Endocrinology is a fun word

Liam had an appointment today at the same satellite location as his GI and former neurologist and I assumed we'd be seeing the nurse practitioner again today that we saw last month for GI. Instead we actually got to talk to the endocrinologist.

If you remember, last month I was told that Liam was not getting enough calories and we needed to up him to 5 cans a day from his current quota of 3. We still have not been able to get up to 5. On the best days we were getting 4 1/2 cans a day. But we were not able to sustain that amount for long before he started vomiting again. I backed off and he is getting a full 4 cans for now. But still, it's no where near where the GI said he should be.

Imagine my shock when Liam got on the scale today and he gained a whole pound since last month. He actually gained 1 lb 3 ounces! I couldn't believe it. I don't know how that happened. He's vomiting again and it's still not the goal amount of food they said he needs.

When they checked his height he had shrunk.

Well, obviously that didn't happen. At least I'm pretty sure that didn't really happen. I just think he's really hard to get an accurate height when you have to ram his head against a board and stretch out his leg as far as we can. You're libel to get different heights on different days.

I mentioned to the Dr that Liam is small for his age (only the 5th percentile), and that he has always poked along on his height and weight (except for this past month!) and we have always struggled to help him grow.

She asked if we had ever had any specific tests to check his cortisol, thyroid, pituitary, etc.  And we haven't. So, she ordered labs to have everything checked out. We should get the results in about 10 days.

We've had the idea of Liam going on growth hormones for quite a while, not only because of his slow growth but because we know of someone like Liam who started the hormones and was able to sit within a year of starting them.

I asked the Dr about trying them on Liam but she was very hesitant to think that he would need or benefit from them.

I honestly don't expect anything to be wrong with his labs. But it will be nice to have one more thing checked off on the 'to do' list.

Just not enough...

There is an apparent and obvious discrepancy in the amount of food Liam should eat versus how much his body will let him eat.

Yesterday he had his 6 month check up with the GI at their satellite clinic in Wilmington. We were supposed to have an endocrinology appointment immediately following the GI, to talk about his growth, but they had to cancel.

Imagine my surprise when the practitioner told me she does most of her work with endocrinology!

We talked about Liam's height and weight issues. He is only growing about 3-4 cm a year. The average child grows 7. While his slow height growth doesn't set off any alarms (children with CP who can't bear weight don't get good growth) it's his weight that seems to be the detrimental factor.

And while I thought we were doing great with his feedings (he hasn't vomited in months and we are now up to 5 oz at a bolus) he still isn't getting enough. He is holding steady at 25 lbs and has been hovering at the 24/25 lb mark for the last year.

Liam gets 3 cans of formula a day (about 24 oz of formula plus 7 oz of water) and they want to him to get 5 cans (40 oz of formula plus 10 oz of water).

I don't know how we are going to accomplish this without making him eat all night long while he is sleeping.

According to the NP, Liam isn't getting but 750 calories a day and they want him at 1200.

And if we still can't get him gaining wait with 1200 calories a day, then we will look at growth hormones....which I've heard isn't necessarily a bad thing for kids with significant CP.

So, I am to try and up his feeds as I see fit and hopefully get him at or near the goal within the next three months. The NP in Wilmington is going to see Liam every month and keep a close eye on his length and weight and hopefully we can get this boy growing. Afterall, he needs good caloric intake to grow his muscles as well!

I just hope he tolerates the changes and we can keep everything down.