Undiagnosed Childrens’ Day Instagram Challenge

Day 20 “What I’m having for lunch”

Today Jacob and I spent the morning at the hospital for an appointment with developmental psychiatry. An ECG and blood test was recommended and as I couldn’t face coming back in a few days (parking for one reason) I decided to power through and get it done today.  (He was very brave, if somewhat confused!)  So by the time we left it was certainly lunchtime.  After a weekend of too much chocolate and my very sludgy run last night, I thought we should have something nearly healthy!  Needless to say his didn’t touch the sides!

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Birthdays

bubbles

By the end of July we’re thinking about Jacob’s birthday. He’s going to be 12 years old. I always find it a bit of a weird time. I s’pose birthdays are a bit like Christmas; Quite sentimental and also a time for reflection. Perhaps I don’t do this as much as I used to but I do think about how far he’s come. What we hoped he might achieve and ultimately what it looks more and more likely he won’t achieve. I gave up on the notion of speech quite a few years ago now. What’s the point of agonising over something that won’t happen?   Presents are always difficult as he hasn’t really grown out of any of his toys. And he has loads. I week before his birthday I try to rationalise them and set aside a box for the charity shop, but some old toys are rediscovered and are interesting again. I take him to Toys R Us to see if anything grabs his attention. In the past I have found taking him round the baby toys heart breaking (he can’t build with bricks or do any imaginative play) but this year I’m not too bothered. Maybe it’s all about how much I’ve “come on” than him! He’s not really that interested in anything but I settle on something to help with fine motor skills and that will fit in his backpack to carry around. I go back the next day to get it in secret, though we don’t know he understands the concept of presents. However like all really young kids, when we help him open it, he’s just as interested in the box his toy came in as the toy itself.   When Jacob was little his birthday would start me thinking about all the events following his birth. Within 24 hours he had stopped breathing and was rushed to SCBU where he would stay for 3 days and stop breathing a further 6 times. All investigations showed nothing was wrong and it was put down to a “blip”. I don’t really know how to describe this time at all. Words actually fail me, but the feeling of my skin turning cold and a rising boiling hot panic will never leave me. For many months afterwards I would have the image of him blue and being whisked away from me running like a film clip in the corner of my mind constantly. I don’t know when it stopped, but the reality of apnoea alarms, follow up appointments and worrying if he was “OK” took over and I don’t mind admitting panic attacks and overwhelming feelings of dread took their toll. I got some professional help which worked but when we discovered Jacob wasn’t developing properly those feelings returned. Again I can’t really remember much about the specifics of this time. I think of them as the “dark days”, those 8 months or so from being referred and seen by a developmental paediatrician to getting an actual diagnosis of “your child has a learning disability and is going to be disabled”. That’s a conversation the sticks with you for sure. That moment when someone who knows what they’re talking about confirms what you’ve been hoping wasn’t true, but deep down what you knew was coming. But we’re not in the “dark days” anymore. Jacob makes very very slow progress but almost always I don’t care. We go to holiday club and birthday parties and from time to time I think “Bum he’s the most effected child here” but he’s usually the happiest and cuddliest. He’s always going to need 24 hour care so anything else he learns now is a bonus. He is happy and loves life and really that’s all we want for our children isn’t it?

Appointments

One morning in early December I’m getting up and ready early as we’re taking Jacob to an appointment, but not one of his regular follow ups….this time it’s with a new consultant. I realise how far we’ve come because I’m quite hopeful that not only that we may get some ideas as to what’s going on with our son, but also that they may get real insight into how his behaviour affects him. It’s a 3 hour appointment!

I remember that first referral letter from Jacob’s neonatal consultant to a developmental paediatrician. It must be more than 10 years ago now, when he was 9 months old. I spent ages re reading it underlining and looking up all the words I didn’t understand , but the phrase “….He has the demeanour of a much younger child of about 4 ½ months…”stays with me to this day. I hoped that he had seemed so because he was ill, was having a bad day and would be fine in a few weeks when we had a follow up appointment.

Fast forward 10 years and I’m hoping he has a really bad day and our new team of doctors see him as he really is…at his worst! There’s always a concern that your description of your child’s symptoms is not as effective as actually seeing it. Thank goodness for smart phones, I’m armed with plenty of footage!

The appointment with Neuro Psychiatry is indeed 3 ½ hours long! We’re tired, but slightly more optimistic at the end of it. There have been recommendations and a new drug that might help. However again we are told that “Jacob is quite unique so recommendations are not straight forward… trial and error etc” that’s fine, I’m grateful for the honesty. Although I still find them exhausting I’m much better at this appointment business, but I would have liked some advice 10 years ago when all this started. So whether you’re swan member or have stumbled on this blog here’s what I’ve learnt over the last 10 years and what I wish I’d known at the start.

I write everything I want to say down before you go. It doesn’t have to be a question, sometimes it’s just a list of symptoms or something general that’s popped into my head. I still do this and its actually appreciated by the professional.

I try not to get frustrated if they’re running late! I usually find that the doctors that keep you waiting are usually the ones that will give you the most time that’s why they run late.

Probably the most important thing I’ve learnt for me is to be realistic about what can be achieved at the appointment. In the early days I was always hoping for “ah, yes I know what this is and we treat it like that!” I was always disappointed, and sometimes this was crushing. Our children are complicated, different, difficult to understand and even with a diagnosis I’m aware that we may be left with more questions than answers. I take all my questions along but try to be prepared for the fact that we won’t be getting all the answers that day. It’s just another small step.

I let Jacob be himself. If he’s having a loud, agitated day when his sensory processing disorder is uncontrollable I let him get on with it in the consulting room. They need to see how it really is.

I am acutely aware that whichever doctor we see is a specialist in their field. Jacob’s case has been presented nationally and internationally but still we are diagnosis free. However Jacob seems to be traversing the fields and we are the expert on Jacob. I took armfuls of google print outs of genetic conditions that he could have to our genetic appointment some years ago and said to our consultant “ I hope you don’t mind but could he have this… or this… or this?” He said “of course I don’t mind. I’m the genetics expert but you’re the Jacob expert!” We are the best experts on our own children . So whichever specialist we are seeing will (or should) value our unique insight.

The point is I suppose that we spend so much time with our children and doctors only get a snap shot impression of them which is not enough really when dealing with complicated cases. If there are any new symptoms or behaviours I video them on my phone. I tell them exactly how it is and I try not to brush off or deny how hard it is for me my family care for Jacob. This has been particularly hard for me to do and is a whole blog in itself! One for another time….