Tonight, as every night, I cuddled with R as she dropped off to sleep. Cuddling her, I could feel her sharp little shoulder blades dig in to me; her sharp little elbows too. R is getting thin.
It wasn’t always like this. R used to be quite chubby. As a toddler, her jeans struggled to contain her little belly. Small and chubby, she was very cute. For several years she grew steadily along the 2nd centile on the growth charts for height and weight. Small, but still within the normal range. Recently, she has fallen off the charts for both. In the last 3 months she has lost more than 1kg and she is still losing weight (this is equivalent to my losing half a stone, only, of course, that I am not supposed to be growing).
At her neurology appointment on Thursday, a PEG was mooted once again. For readers unfamiliar with such things, PEG stands for Percunateous Endoscopic Gastrostomy. This is a feeding tube which is inserted directly into the tummy. Food, fluid and medications can all be administered through the tube. The subject was initially broached before Christmas. R had all but stopped taking her medicines. We had tried liquid forms, tablets and granules. She was refusing them all. This made her unwell and the more unwell she felt, the more she resisted taking her medications. Her neurologist mentioned a PEG. He said that, in his experience, girls with Rett sometimes simply stopped eating. A PEG would allow the medication to be administered and could be used to supplement or replace food or fluids should that become necessary. (This last is important. There is an additional concern that R’s fluid intake may be insufficient.)
Having a PEG fitted is a big step to take. According to CEN* (the National Managed Clinical Network for Children with Exceptional Healthcare Needs) criteria, the simple insertion of a feeding tube would take R from the category of complex to exceptional healthcare needs overnight. For many healthcare workers, the insertion of a PEG is just another routine intervention. It’s not for a parent: feeding your child is a fundamental part of being a parent. (Such is the impact of tube feeding on parents, CEN have developed educational resources to help healthcare workers understand how this affects families). I’m not sure that I’m quite ready for the increased medicalisation. G definitely isn’t.
Something does need to be done. At dinner tonight she ate no more than a bite of roll, which she let dissolve in her mouth rather than chew. Her neurologist is trying a different medication, in the hope that her loss of appetite is due to the Topiramate which she has been on since the start of the year. This requires R to be weaned off the Topiramate first. Meantime, R’s still getting thinner.
*Declaration: R is pretty much one of the faces of CEN and we are pictured on the home page. Don’t say that you haven’t been warned.