Endocrinologist

On Friday I took James in for his six month follow-up appointment with the Endocrinologist. For those of you who do not know what an endocrinologist is, as I know I didn't a year ago, this is a doctor who specializes in the endocrine system. The endocrine system is a complex group of glands. Glands are organs that make hormones. Hormones control reproduction, metabolism (food burning and waste elimination), and growth and development. Hormones also control the way you respond to your surroundings, and they help to provide the proper amount of energy and nutrition your body needs to function. So basically the endocrinologist deals with hormone related issues.

We first seen the Endo Doc in November last year due to the fact that some of James' hormone levels had been low at the time. It was determined that altho delayed in growth he was doing okay and the low hormone levels could just be from the continue instability at that time.

I guess I wasn't really on the ball on Friday because I didn't really expect much to come out of this appointment seeing as the last time we'd gone it was short and sweet. Well it seems James has really not gained or grown any in the last six months. This isn't really a surprise, we knew this, hence the reason I should have expected this visit to involve more, but I guess I was sort of thinking the Genetic Doctor and Dietician would tackle this issue next week.

In the past six months James grew 1.2 cm and is now 83.4cm long. For anyone who would actually search through the blog you will find that I previously reported James as being 86cm (March 19). This is an inaccurate measurement of his length as it is done by our homecare dietician on a portable measuring pad and not the hard solid type that they have at the hospital. His last two measurements at the hospital on one of these have been 83 cm, so this seems to be accurate measurement. As well, he is now 2, which means he progresses to being measured standing. At this visit they measured both ways to get a comparison because of the fact that he had grown so little. When measuring lying down they consider it to be a Length Measurement and when standing it's a Height Measurement. Considering his Height Measurement was 83.6 and hardly any different I'm not sure why so picky, but now I know there's a difference! :) Whatever the case, James has gone from being in the 5th percentile to below 5th percentile.

As for James' weight he weighed in at 10.9kgs (24lbs 0oz) with his clothes on. At his last visit he was 10.6kg. For some reason I did not record his last visit in my book, so we do not know if this was with clothes on or now, but regardless for a six month period he has not gained enough and when looking at his graph we see that in the last two months he fell off his consistent pattern of following slightly below the 5th percentile. Until now we could always say that we knew he was below the charts but that he was following consistently with the chart pattern and so he was doing okay.

There are a few things that need to be considered with his weight when looking at the past 6 months, the biggest being that in December he lost 1 kg in weight while being sick and in hospital. But yet, he quickly regained this and the next month was back in line on the chart. From December to February James was struggling with fevers and what we now know as aspiration, reflux and chronic bronchitis, making him generally unwell and not allowing him to get proper rest. You would think that since these issues are somewhat better controlled now we would be seeing progress, but unforunately not. By mid-April we were somewhat concerned that James was losing weight, he was looking very thin and somewhat unhealthy. Starting him on Prednisone change this, he quickly picked up the round face side-effect which made him look much healthier, as well some good outside sun gave him better colour. He looks well now. But it is a deceiving look - as his weight confirmed. We also must look at the fact that James has been eating very well in James terms since being on Prednisone, so his weight should be much better, making us question how much weight he had lost.

So after all that babble where are we at now? Well first it needs to be determined if this is just a weight issue. If he's not gaining weight because he's not getting enough calories in a day then he may not grow height-wise either. James will have blood work this week to review how his body is doing and we see the Genetic Doctor and Dietician next week to go over that and determine how his current formula and intake is. The Endo Doc did not think that it was so much a weight issue for two reasons: 1. He's g-tube fed; 2. the blood work after his last appointment showed his thyroid function to be borderline. Even if James is not getting totally as much as he should by his g-tube feeds, he is still getting a pretty good balanced diet and probably doing better for consistency then a normal fussy or ill two year old may do.

Not knowing all too much about the thryoid I didn't have a whole lot of questions at the time. He explained that normal thyroid symptoms might be tiredness and lack of energy ... well those definitely don't describe James. He also said that sometime thyroid issues show no symptoms, which my research also said. So I did my research (oh I love the internet) and found that it took me a bit longer because "borderline" thryoid problems, as he called them, could mean more then one thing - you can have an overactive thyroid (Hyperthyroidism)or an underactive thyroid (Hypothyroidism), as well as several other issues. So my reading deteremined that James would like have the overactive thyroid as some of the symptoms do describe him - weight loss, frequent bowel movements (could just be colitis with James), perspiring more than normal; difficulty tolerating hot weather (he was actually slated to have his thyroid checked last year b/c of this but then it settled down and we thought it was just because he was more stable).

So this week when James goes for his genetic blood work we'll also have blood taken to test his thyroid again. The doctor will call us in a couple weeks to let us know what they will do if it's not or what further testing is required if it is. The other issue that needs to be factor into this is whether this is just an LPI issue. One of the symptoms of LPI is delayed growth, meaning that growth spurts come at different times then what is considered "normal". We were also told this would mean he would likely always be "small". But before we can say it's "just" LPI we have to go through the process of making sure everything appears to be functioning properly.