About a month ago, I had a follow-up appointment with Reilly’s endocrinologist at Toronto’s Sick Kids Hospital to see if she had any further insight as to why Reilly’s growth (height) has been impacted considerably. At this appointment, Reilly grew a negligible amount, thus moving her to below the 3rd percentile. The only suggestions the doctor had was to do more intensive growth hormone analysis or possibly do an MRI to see if there was a lesion on her pituitary gland. In the end I agreed to come back in 6 months and redo the basic blood work tests to see if anything has changed and then go from there. Since the visit I have done some research in an attempt to find some more answers and much to my shock I found on the ISRF site a reference to NEW! RTT-specific Growth Charts.
According to these charts Reilly would be in between 25 and 50th percentile which is good in one way but the fact that Reilly all of a sudden ‘stopped’ growing at about 4-5 years of age is still unsettling. It would be one thing if Reilly was always small for her height and was consistent over the years but a rapid growth deterioration suggests something else is going on. Nevertheless, it is a little frustrating that I came across these new RTT growth charts and the endocrinologist wasn’t aware of them. Instead of getting frustrated at how the parent has to become a world-wide researcher in trying to figure a lot of this out, I am trying to view it as an opportunity for me to strengthen the relationship I have with Reilly’s doctors and maybe play a little role in expanding the awareness of this rare syndrome in the medical arena. Easier said than done 🙂