My daughter started High-Risk treatment at 3 months old and now completed her treatment at 20 months old (now on DFMO to reduce risk of relapse). She has always been tiny - hovers around 15% for weight and 3% for height. Recently, I feel like she is not growing. I know that short stature is a late effect of treatment but when I bring this up with her onco’s they don’t seem too concerned. She is 100% tube fed and we have reduced feeds to promote hunger and wean her but I still find myself getting upset when she fits in 12 month old clothes. When should I push for an endocrinologist? Is there a period of time I should wait before I really worry and take action? Worried there is not much action to take. Any advice?
How old is she now?
Wilson is 4 and still fits into 2T clothes. He is followed by endocrine but for adrenal insufficiency and thyroid stuff. Endocrine tracks his rate of growth and is happy that while he is very small (5% height) for his age, he is growing at a good rate.
Has she always been small? Is she falling more and more behind?
Thank you for your response Kathryn! She has always been small and has pretty much stayed on her 3% growth curve (sometimes dropping a little). Just wondering if I should just go ahead and request an endocrine specialist to review her growth. Is there anything they can do at this point or is all just out of our hands at this point?
Our endocrinologist said she wouldn’t recommend any growth hormone for quite a while as it could trigger some cancer cell growth (should some be hiding).
So, yeah, it kind seems like we watch and wait right now.
We were told it was normal that our son didn’t grow for a year after the end of treatment. They explained us that his body was using all calories for rebuilding and reconstructing itself from all the effects of the treatments and would grow only once this step was ok (I don’t know if that’s clear excuse my English).
Indeed it took about 2 years for our son to start growing again and we were sent to a specialist but he told us he didn’t want to give him growth hormones before 3 years post treatment because of the risk of inducing tumor growth at the same time. He recommended to be patient and he was right, our son took a little more long but it was ok.