Courtesy of stuff.co.nz

We’ve recently had to make a decision about where we’re headed with M’s health and what tests, if any, we want to push GOSH to consider.

We’ve had a mixed success with the Movicol as he has started using the toilet successfully again and we’ve been able to banish the pull-ups to the bottom of the cupboard for the next time there’s a “just in case” situation.  However, M now seems to be fluctuating between constipation and chronic diarrhoea and we’ve reduced his dose down to 3 sachets a day as the 4 were really proving to be too much for his system. We’ve tentatively settled there, even though it doesn’t yet feel 100% right.

The positive and best thing is that he’s conquered the toileting struggles.  These had been a major source of distress over the summer and it’s nice to back on an even keel.  M feels as if he’s more in control of his body – well as much as he can be whilst dealing with the ongoing battle with the symptoms of the EGID – and he’s really happy in school.  What’s more, school have been working hard at putting a medical care plan in place for him to deal with the changing nature of his EGID and his medicines, which means that we feel confident that they’re taking the situation seriously and will support him during the school day.

Courtesy of warriorfitness.org

BUT – and you all knew that was coming didn’t you? – I’m still feeling unsettled about his over-all health and have a feeling that we’re not really dealing with the root cause of the problem. Despite some days when it appears he could eat for Britain, his appetite is down and his lunch-box is emptier than ever.  He’s beginning to object more to taking his daily medicines and there’s been numerous mornings recently when I’ve held my sobbing child on my lap and had to coax him to take the full implement prescribed.

His sleep patterns are off once again and I’ve lost count of how many mornings I’ve woken up to find a small limpet-like child clinging to me and stealing the duvet from my back.  Last night, I disappeared into my bed at 11.20pm, having found M still avidly reading his atlas and discovering new and interesting facts to share with me.  It has to be said that a lot of the sleep problems appear to be related to his emotional and psychological health as when Mike came upstairs just 10 minutes later, M was flat out and fast asleep in his own bed.  It’s as if he needs to be reassured that Mummy is nearby and once that’s clear, then all is well with the world and he can let himself drift off to sleep.

He’s emotional and tired and fed-up; and, to be honest, so are we.  We’re working hard at remembering and focussing on the positives, but sometimes that feels like a step too far. The constant barrage of frustrated behaviour, food management, pain relief, sleeplessness, appointments. emails and phone-calls have drained me completely and I just felt unable to face another discussion with yet another faceless registrar at GOSH, who has little or no knowledge of M and needs me to bring them up to speed before I even get to the point of the phone-call.

So, at the beginning of the week, I asked Mike to speak to GOSH and put forward our case for another set of scopes.  It’s been nearly 2 years since the last ones were done and we felt it was high time he was checked again.  We’ve got no real answers as to whether all the medicines are 1) necessary or 2) working, the limited diet is a strain and this past week we seem to have added raspberries to the list of forbidden foods.  This might seem like an easy decision to make, something of a no-brainer, but, as some of you may remember from my previous blog posts, M suffers from an allergic reaction to the anaesthetic. It’s been a big decision to make to put him through an ordeal that we hope might provide some answers, but that we know will definitely cause him pain.

All I can say is that someone must have been smiling down on Mike on Monday.  I’d warned him that his initial phone-call would only get us put on the list and that if he was lucky he’d speak to a registrar on Tuesday or maybe Wednesday.  I fully expected that we’d then have to wait for M’s consultant, Dr H, to be consulted and that we might get a final answer by the end of the week.  If he argued our case well enough, then there was a possibility we’d get a yes, but I prepared him for battle.  So imagine my surprise at getting a text message at 3.45pm on the same day saying that not only had the registrar been spoken to, but they had agreed to recommend scopes and, what was more, Dr H had been contacted, given her agreement and scopes would be scheduled for 6-8 weeks time.

The GOSH gastro team have expressed the same concerns about M’s progress as us and made making that big decision for more investigations much easier than I could ever have hoped. So all we need to do now is wait for the appointment date to be set and it’ll be full steam ahead.