We had another trip up to Great Ormond Street Hospital yesterday afternoon. It was a situation that proved the necessity of keeping a good working relationship with the doctors there, no matter what the history. Dominic's knee had starting dislocating randomly just before we left the hospital. Obviously with everything else going on (see here if you want refreshing) my request that someone told the neuromuscular consultant fell on deaf ears.
I ignored the problem for a while, it didn't seem especially urgent when we were lost in the chaos of coming home and I was due to see her soon anyway. Two things happened to make me use one of my frequent flier golden tickets though. Firstly, we got a letter through cancelling his appointment and moving it to September, and secondly, Lilia told me that her knee did the exact same thing and promptly started to clunk her lower leg in and out apparently at will.
That one little freaky leg move could just change everything as far as trying to diagnose Dominic goes, and the enormity of it wasn't lost on me. We've always assumed Dominic was alone in his underlying condition, as both his older brother and sister have never had any problems beyond reflux. Although Lilia has had 'issues' with staying clean and dry for years now despite having potty trained herself very early on and been dry with no accidents previously. I'd always dismissed these accidents as an emotional reaction to all the trauma she's been through since she was little. Her knee doing the same thing as Dominic's hinted at another possibility though. If part of her body was misbehaving in the same way that Dominic's did though then it could be a huge flashing, neon sign declaring that in actual fact she had the same underlying condition, whatever that condition is. Half an hour later I had made an appointment for her with the GP.
The effect on a GP of getting weekly, complicated letters from various specialised consultants giving lists of tongue twister conditions seems to be an overwhelming feeling of inadequacy. I barely had to get to the word knee and he was already assuring me that he would refer Lilia straight to the specialist consultant. Ok then. I left feeling more depressed than was perhaps necessary and ended up eating enough Wham bars to make myself feel utterly sick. Eventually I sat in front of my trusty computer and bashed out an email to the neuromuscular consultant, outlining what had happened and asking whether she could bring Dominic's appointment forwards. A couple of days later I got an email back asking me to turn up in two days time. Not so fabulous from a child care point of view, but amazing considering that most children wait nine months to a year between appointments.
So I took him on Thursday, suited and booted in his lycra spinal jacket (we saw the community physio in the morning as well and I think you have to show willing with such things) and in a foul mood, that may well have been linked directly to the suit that was torturing him into sitting upright. Although that said, something has been really bugging him recently and it's making his behaviour quite a, ummm, challenging at times. After arriving at Great Ormond Street hospital, we quickly stopped off at the surgical ward to steal some steri strips (to replace the glut that Dominic had eaten) and to say hello to the staff. We ended up having to also steal some sugar from their kitchen to stop the resulting melt down that started the second a nurse spoke to him. After he'd finished upsetting the staff and they'd finished upsetting him, we made our way over to the outpatients department to see our lovely neuromuscular consultant, who also now, thankfully, is Dominic's lead consultant at GOSH. Using the age-old parenting tool of bribery, we managed to get him happy enough to allow the specialist physiotherapist to wiggle knees and move his hips. She said his joints were very lax, but evenly so on each side. She speculated that it was his muscle weakness causing his knees to clunk in and out, and as some muscles were gaining strength (from learning to kneel and stand with assistance) and others not (as he doesn't necessarily use the same muscles as other children do to achieve the same result) the stronger muscles were pulling the knee out of line. Fine, makes sense… until you apply the same theory to Lilia who has no apparent muscle weakness at all, but more on that in a second. One thing that did arise was that Dominic's buttock creases were uneven, and the physio agreed with my original request that he needed an xray to check his joints.
The xrays were quick and painless (the xray receptionist knew his name without asking which was rather disconcerting when you think about the amount of accumulative radiation that means he must have had), but we didn't hang around for the results, knowing that clinics are busy times for everyone, and it's better to give them space and time to review them. Lilia, I found out, needed to be referred through a local paediatric consultant first so the conclusion about her freaky knees will have to be deferred for a while. The neuromuscular consultant was very apologetic, but it is the way things work, and she just can't accept a referral from a mere GP.
The next day I came home from my stint at nursery with Dominic to a flashing light on the answer phone telling me I had a message. The second I heard the physio's voice I knew they'd found something. I phoned her back and she went to great efforts to reassure me (although I assure you that I am rather more world-weary at the thought of something new to add to our list than panicked) that it was nothing to worry about, but that Dominic's left hip looked different from the right. Different how? was my question, and she hesitated before saying that it looked underdeveloped, as though that was a taboo word. The worry, it seems, is that with children that don't walk or stand, the hips can become underdeveloped over time, so this hip could potentially get worse. The consultant's approach to children like Dominic is to identify possible issues that could arise in the future and tap into the services before they are needed. With this thinking in mind Dominic is going to be referred to the orthopaedic team in case surgery is needed in the future. He is under the spinal surgeons too, because if his kyphosis becomes permanent rather than just postural, we don't want to be sat on a waiting list to be referred, we will want to get the right people involved straight away. So whilst it's never nice to add in problems and consultants to our already chocka list, I appreciate the thinking behind it, and in the short-term, we just make a note of it, and carry on life as 'normal'.