Life is never dull in a large multi generational household. Although most of the time we rub along together pretty calmly, there is always something to think about, whether its one of the older ones not coming home when they are expected, Li Li with his sensory issues, or the twins fighting or needing attention.

In amongst daily life, appointments and meetings for Li Li, we have been concerned about twin 1, for about a year or so. It started a while after he and his brother had their pre school jabs. The usual little lumps appeared on their legs. However twin 1’s didn’t disappear. It seemed to get larger and the skin on his thigh seemed to get harder and harder. One day, whilst  messing around with Granddad, having his back tickled and bending his legs up to kick his own bum, Granddad noticed that the affected leg wouldn’t bend as far.

We kept an eye on it for a little longer but noticed his skin started to look a bit pitted, like cellulite. So in February our daughter booked an appointment at the surgery for some advice. The Paramedic Practitioner wasn’t certain what it might be, so, with Mums permission, took a couple of photos to refer to the GP. The GP wanted to see him in person and was also unsure what might be causing the issue, so said he would request an appointment at dermatology at the local hospital.

He was obviously a little concerned, as the following morning he phoned Mum, saying he didn’t want little man to wait for an appointment and she was to take him straight to the children’s ward and he would advise them why he was sending him in. Our daughter was starting to worry, but the GP assured her it was just to get him into the system as quickly as possible. Several Drs prodded and poked him, decided he needed a scan, blood tests (although they did neither while he was in) and a referral to dermatology.

Poor little guy was terrified of the scan, not believing he would feel no pain, and Mum had to pin him down to get it done. Granddad and myself had the task of taking him for the blood test. The children’s ward refused to do it as he was over 5!, so the path lab it was. The needle went in first time, but he turned to look and panicked making the needle move and have to be removed. We then spent 20 minutes trying to coax him into letting them try in the other arm. It ended with 3 of us pinning him down whilst a fourth did the deed. How cruel did we feel. But 5 phials later and being offered the sweetie tub, he was happy and smiling. Now it was just a waiting game.

Our daughter received a call to say that the scan had revealed no tumours, just a thickening of the skin and an appointment would be booked with dermatology. I know we shouldn’t but we searched the internet for clues as to what it might be and were a little scared by what we read. We were hoping that our searches would prove to be incorrect.

The appointment finally came through for June and as we were away on holiday, we tried to enjoy the day whilst waiting for our daughter to call us. When she finally did, we were relieved that, although our searches were not entirely incorrect, he had a milder form of the condition we had been reading about. The diagnosis is a rare condition that affects 1 in 300,000 people, called Linear Morphea and he needed a referral to a specialist at Great Ormond Street Hospital (GOSH).

The condition was spreading, albeit slowly, in both directions. We read that we should keep his skin moisturised to stop it drying out. So each night before bed, his leg was creamed and massaged. When the appointment details arrived it was for October! Our daughter tried to bring it forward, but to no avail, so they enjoyed the summer holidays and kept up with the moisturising.

Finally the day arrived and after setting off for London at 7 in the morning. Mum and Dad were checking him in when they were advised the appointment had been cancelled and rescheduled for two months previously. The receptionist asked if they had received the letter. Well obviously not as they were there in October!!! She wanted them to return home and she would organise another appointment. Fortunately our daughter is a strong person and demanded calmly but firmly to be seen that day, refusing to leave until that had happened. The receptionist made a couple of phone calls to the consultant and it was agreed he would be seen, but they would have to be slotted in between other patients……………. It was going to be a long day.

But they were seen, and the consultant was concerned at how it had spread. It was now close to his knee, which if not halted could affect his mobility, and also up into his buttock, which could affect his groin. A treatment plan was set out whilst they waited and then discussed with Mum & Dad and he would have to return to the ward, at a later date, to start the treatment.

Two weeks later he was on the ward and two nights accommodation booked for him Mum & Dad across the road. We may have had a long wait for the first appointment and the initial interaction with the hospital was not great, but subsequently GOSH have been wonderful.

On day one he had nose and throat swabs, which he hated, but sadly, worse was yet to come. He had to have two biopsies, one in each leg, which left him looking like he’d had a hole punch in his leg. Afterwards he told Mum that he thought the nurses had been trying to kill him. 😢 And still it continued, there were blood tests and a cannula put into his little hand to take the 1st round of intravenous steroids. After a long, traumatic day, they wearily collapsed into bed glad the worst was now behind them.

Over the next couple of days they managed to take his mind off things and enjoy some of the sights of London, in between having two more rounds of intravenous steroids. Once all done he was allowed to come home with a bag full of medication. He is continuing to take steroids, orally, on a daily basis, the dosage reducing slightly each week, until the new year. Alongside this he takes a daily dose of anti sickness medication to help his poor tummy. It doesn’t always stop him being sick, but he takes them all without question. They give him mood swings and after a long day at school he can morph into the Incredible Hulk, shooting anger at anyone in his path. Unfortunately it’s quite funny to see & the recipient of his wrath often sniggers at him which inevitably makes him worse.

Additionally once a week he takes a really strong drug called methotrexate, which he will continue to take every Friday, to try to halt the spread of the disease, for the next three years. Every Saturday he will also need to take folic acid to help with some of the side effects he may experience. The moisturising also continues, which he now often does himself.

Initially he will need to have blood tests every two weeks, which we hope will increase to eight weekly. The first of these was on 29th November and we were hoping that we wouldn’t need another pin down session. Granddad put some magic numbing cream on both his hands and inside of both arms an hour before he went down to the path lab. It obviously worked because he was as good as gold and it was all over and done with in 5 minutes.  Lets hope it continues to work, as his next blood test is due today.

He has had a few bouts of sickness, which unfortunately means he misses the odd day of school. GOSH have been very supportive and our daughter can contact them whenever she is concerned. He has been checked out at our GP’s just to make sure the sickness is nothing apart from side effects. The Dr he saw had also not come across the condition before so was quite intrigued.

Meanwhile we keep things normal, well as normal as this crazy house can be, and just give him extra cuddles when his tummy hurts. He has fun with his twinnie dressing up, making things and getting ready for Christmas.

He has been such a brave little soldier. Most adults would find the biopsies traumatic, let alone a six year old boy. He has coped with it all so well, including the side effects of the strong drugs, the blood tests and the regular prodding. We are advised that it will take approximately 12 weeks to see the methotrexate make a difference to his skin and the condition usually burns itself out within 5 years.

We hope we have caught it early enough and his mobility is not affected. Only time will tell.

We have had to place our trust squarely in the hands of the experts. His care is being shared between our local hospital & GOSH. His first follow up appointment, at the local hospital is next week, and we are hoping that all is progressing as expected.