Yesterday we met our Adult Neurologist in a hospital clinic, over 4 months after Joshua turned 18 and 3 months after we were discharged by his pediatric consultant. Joshua was in good form as we drove to hospital, with the windows down and his favourite loud music blasting out. His clinic was held in the Cardiology unit for some reason, but they explained that it was just where the consulting room could be booked. But it did mean that there was nobody like Joshua in the waiting room, where we were for over 30 minutes, but he sat waving at the elderly, heart patients.
Joshua is not a very patient waiter these days, so we had some kicking and running up and down corridors after 15 minutes of sitting nicely. He was weighed but resisted the contraption on his head to measure his height. He was not impressed by the blood pressure monitor either, so he wriggled too much for it to take a reading until I suggested that she swapped the cuff to his immobile arm. In the end I had to resort to a visit to the cafe to buy something to distract him and he sat beautifully drinking his orange juice and eating a satsuma. Thankfully soon afterwards, we were called in by a small doctor who did not introduce herself to either of us.
She told us to sit down next to her desk and I joked that Joshua loved to play with keyboards and telephones, so I would sit him furthest from her desk. She was not impressed by this declaration and launched into her questions, straight faced, about his seizure type and frequency and then checked that his medication was as she had on her screen. After a few minutes, as predicted, Joshua stood up and tried to get to her tempting equipment on her desk, but she told him to sit down again. Unimpressed, he made a bolt for her door and so I had to retrieve him. She had absolutely no empathy at all and made no attempt to engage with him, which got my back up – who would want to sit in an office being talked about? I would have kicked off too!
She told me that the hospital clinic environment did not suit Joshua – he is fine with it with no waiting times and friendly staff, but I had to agree that her clinic did not suit him! She therefore has referred him onto a community health professional who also has experience of learning difficulties – which clearly she lacked. I stood over her, holding Joshua’s hand, as she explained that Adult neurology did not work in the same way as Pediatrics and she avoided the question that I asked twice about how frequently he would be seen. In the end I asked her bluntly ” are we finished now then?” as she sat writing, while we both stood behind her, and she agreed that we were. It was with real relief for both of us that we got back out into the sunshine and the loud music in the car – we both needed that to be able to calm down again.
Joshua has been off colour now since the weekend and I am having to use my powers of deduction to guess what the problem might be, as he cannot tell me if something is hurting him. He seems unusually tired and he has lost his appetite, those are the main symptoms, so what can we deduce from that? Joshua also sounded hoarse on Sunday morning and so I deduced that he had finally caught the cold that I had and then that I had passed to my husband. I knew how bad that I felt at the start of my cold as it began with a headache, sore throat and earache and so since Sunday , I have been dosing him up with Magic Calpol. This paracetamol is to help him to feel better, and I am assuming that it will help if anywhere else is hurting too, so it should do no harm. But if it is my cold, I would have expected him to have come out with a cough or runny nose at least by now, so I am now doubting my diagnosis. If he continues to be unwell, I will take him to the GP, but they are as likely to be as in the dark as I am, other than they may be able to look at the back of his throat – if I hold his jaws open that is! Then they may be tempted to prescribe a general antibiotic, but I would rather avoid that if I can.
We have had periods of mysterious illness/loss of appetite before and work through this same process of elimination. Last time, 18 months ago, it turned out to be his teeth : he had tooth decay, needed fillings, had thrush and two abscesses and once that was discovered to be the root cause of his loss of appetite, he had to wait for 7 months on a waiting list before he could receive treatment. That special needs dentist had told us that he would be reviewed under sedation again in another 6 months, as it is the only way to get a proper look inside his mouth, but that was now a year ago. I will chase that follow up appointment today, in case he is suffering inside his mouth again.
Earlier occasions when he survived on a diet of Weetabix only, he had tonsillitis, so he is prone to throat infections, as I was as a child, But other than that, Joshua has been a healthy child; he is not one of those children who are frequently being sick, thankfully. I am much better at dealing with blood than I am with vomit. He has not needed a GP for months, not since he had a skin rash that school needed us to rule out impetigo, as they had other cases in school and wanted to avoid an epidemic.
So for now I will continue to watch and assess Joshua and to see how he gets on and hopefully whatever it is, will pass and my hungry, lively son will return.
Every hospital appointment that we have with Joshua, we usually have some hope that the Doctor can improve Joshua’s quality of life in some way and yesterday was no exception : Joshua suffered a stroke at birth and as a result his right side is weaker than his dominant left, he has always walked with a limp, his right leg is much shorter than his stronger left. In 2014, he underwent brain surgery to try to improve control of his epilepsy, and while it has reduced his seizures, this surgery also has caused his right wrist and foot to tense up and contort. We have an appointment about his hand/wrist in a couple of weeks, but yesterday we took him to see a local orthopaedic surgeon to see if they could intervene and improve his foot position and consequently help with his walking and comfort.
We hardly had any wait at all at our local hospital, we were called in to see the Doctor before we had even sat down in the busy children’s waiting room. We had not met this registrar before and he fired questions at me, while I was trying to control Joshua, who wanted to use his telephone or keyboard and did not wish to sit down. Rather than read Joshua’s notes he asked me when he last had botox in his legs and what age he was when he walked, he had no rapport with Joshua at all – as opposed to his hand doctor who I love , he always asks Joshua if it is OK if he speaks to us, his parents for a while. This Doctor asked if I could “make him lie down” and he made me feel pretty uncomfortable while Joshua was lively in his consulting room. I was able to make him lie down, with some encouragement, so that the Doctor could see the different leg lengths for himself.
Joshua stayed on the couch, all the fight gone from him, and began to doze while the doctor delivered his verdict to us, we have seen him use this coping mechanism before when he is not impressed by being the sole topic of conversation : There was nothing surgical that he could do to help Joshua’s malformed foot. Tendon lengthening surgery was unlikely to be sufficient and he did not think that Joshua would be able to comply with 6 weeks of non-weight bearing after reconstructive surgery, which could mean that he could be less mobile after surgery than he is now. We were not keen on the idea of surgery anyway, but if he could have given us convincing arguments and made promises about Joshua’s improved walking ability or comfort then we would have faced it, but given the doubts that he expressed, it was clearly a non-starter and he seemed delighted to discharge us. He even complimented Joshua on how well he had behaved during the consultation as we were leaving!
I was disappointed as we left, as I had had my hopes dashed yet again. I had gone into that appointment thinking that we had options and had left knowing that we had none, so it reinforced how cruel life has been to Joshua during his 17 years. Looking for a silver lining, at least we do not have a difficult choice to make now, there was no choice, he is only looking at a continued life wearing splints and built-up clumpy NHS boots to try to compensate and support what has happened to his right foot. That is better than nothing, I am always grateful for his splints – or AFOs as the professionals call them – as without them he may never have walked as a toddler. But it does feel like another slap in the face for our brave son.