A few days after our visit from the grandparents, we managed to squeeze in another catch up with more family as they were also passing through Southampton. Between her nap schedule, we managed to arrange one meet up in the morning and one in the afternoon, to see Romy and Zephyr’s newest cousin Caitlyn. Meeting Caitlyn had been one of the highlights of the family wedding we attended in Wales back in September, and this visit also delighted Romy’s never-ending maternal drive and love for all things ‘baby’. We walked around the City walls and then managed to catch them again for a second brief meet up later in a city centre park in the afternoon. Romy and Zephyr wanted to make the most of having Uncle Jim as somebody extra to play ‘chase’ with and it was a welcome break from the routine and for us to think of something other than the 22 doses of medicine we have to remember to administer each day at various intervals through the day while Romy is on her GD2 infusion. While Romy is attached to the balloon pump, as well as all the additional medication needed, there is the added worry of looking after the pump and making sure it is all running smoothly.
During this cycle we were surprised to find that Romy started to experience nerve pain for the first time. We thought it was odd that she had breezed through 4 cycles of GD2 and then only experienced pain on the fifth cycle. Some children struggle with immunotherapy causing neuropathic pain but this almost always starts in the first cycle and then improves with each subsequent cycle, yet Romy had never experienced any pain until now. It occurred to us that her dose of gabapentin had been prescribed 5 months earlier when her body weight had been significantly less. We asked for her dose to be reviewed and it was indeed prescribed on the basis of body weight. With a dose increase calculated on her new weight, once this was implemented the pain issue was resolved.
Helen & Tom
