Update
It’s been a busy few weeks. K is still off school (and has been since the beginning of June) with daily severe pain and only the occasional pain free couple of hours. We’ve made a number attempts to get him back to school but each one has failed when he has been really unwell first thing in the morning. It’s incredibly frustrating and depressing for everyone when this happens again & again, so we’re pretty close to giving up entirely and focusing on getting him ready for the move to secondary school in September.
On the plus side, we did manage to get him to the taster day at his new secondary school – wheelchair and all. He absolutely loved it! Fortunately, the school is uniquely equipped to support children with physical disabilities – right down to wheelchair lifts – so he was able to take part in everything. Even P.E!
On the medical front, we met with members of Alder Hey’s psychology unit and K should be attending group sessions along with other kids who are suffering chronic pain in late August. Also saw his pain consultant who is now withdrawing all of his pain meds (since they seem to have had little effect) and is referring him for hypnotherapy instead. She also confirmed that there is little direct treatment for this gut hypersensitivity, so all of the focus is on pain management/support.
On further investigation, his consultant now believes that K has had symptoms for more than 3 years – going right back to early 2008 when he began complaining of lower back pain which was mistakenly ascribed to scar tissue from the dog attack at the time. His appendectomy in 2009 simply exacerbated the condition – which is another reason why any surgical intervention is to be avoided at all costs. Other, apparently, unrelated pains are also part of the larger picture (he had a bout of bad neck pain last month).
She did reiterate that the condition will disappear over time (he literally will “grow out of it”) but that no one can predict when that will happen. So we still have to continue taking it one day at a time for the foreseeable future.
Thankyou for your lovely blog site. Although I don’t know the history of the health problems, my heart goes out to you, especiallly since becoming a grandmother recently, and its being such a rocky road for both us (my husband and I) and for our two children. Knitting is just so therapeutic, so thank you again. I find your sock calculator just hugely useful. Sock knitting is very much a novelty in Australia, but I love the feeling of engineering a beautiful heel, and the look of the finished product.
All the best for improvement in health and happiness
Beth