It started off with a resident coming in to talk with us. She had obviously done her reading on Costello Syndrome but more so on the physical characteristics of the syndrome then the medical side. She knew all about Ali’s hyper flexible joints, extra skin and short stature but knew nothing of the very well known link between Costello Syndrome and issues with hypoglycemia and the fairly well document causes of the hypoglycemia. She asked a million questions and left the room.

Then the endocrinologist came in and to put it bluntly, he had decided that we were full of **** before even entering the room. He pulled his chair right up to me (and turned away from Jason) and proceeded to treat me like an idiot. He looked at my 27 pound, 83 cm four and a half year old (with a syndrome that is documented to cause hormonal issues) and told me that even with the symptoms of hypoglycemia and the two low readings, he had very little cause for concern. He totally ignored her constant low energy levels, her total and complete inability to concentrate for more than a few minutes and her low muscle tone and didn’t even bother to order any blood work (even after we tried to convince him). He even managed to blame it on me. You see, the second episode of hypoglycemia that Ali experienced had scared me so much that I started feeding her constantly. If she went more than a couple of hours without a snack, I made her eat. I thought that trying to avoid having my child in a dangerous situation was the right thing to do and when by chance it did happen to look like she had low sugar levels, I fed her to fix it instead of taking a blood sample to document it. I did this because I had no idea what the endocrinologist would be looking for in his testing and I wanted to keep her safe until we had some guidance. Well, jokes on me, I screwed up the data and thanks to my efforts, the endocrinologist has little cause for concern. Rather than being helpful, he suggested that I stop keeping her safe in favour of documenting her blood sugar levels and so I did and in less than 24 hours, she’s already had a dangerous low (totally asymptomatic).
I’m pretty sure that he and his resident had decided that it was all about making her taller, which is pretty ridiculous considering that I agonized about even going to that appointment in case they suggested Growth Hormone therapy because with her cancer risks it terrifies me.

So now, we’re left with a clear problem. Our daughter’s blood sugar levels fall to level that makes me feel really uncomfortable and the person that can help us sort it out is totally underwhelmed by the evidence at hand. I can feed her to avoid hypoglycemia but that doesn’t cure the underlying problem OR I can hold off on the snacks a bit and let her crash so that I can document the hypoglycemia for this doctor and hopefully, eventually get some testing. I’m so frustrated and stressed out about this and beyond documenting her lows for a few days and then faxing the endocrinologist (along with a big pile of articles on Costello Syndrome) I’m not sure how to get to the bottom of what’s going on. I’m just worried about happens if I hold off on a snack and then can’t get her blood sugar to go back up.

I’m angry that we got treated this way. I usually feel like Jason and I are an active part of her medical care and like we work as a team with the medical professionals. This guy treated us that we had no business being there and that’s not fair. We work hard to avoid extra appointments and interventions and if he’d bothered to listen to us, he may have gotten a better understanding of what kind of parents we are.