At the end of last year I wrote about one of our twin Grandsons and his diagnosis of Linear Morphea.

Brave Little Soldier

In the interim time it has, at times, been very stressful trying to persuade him to take his medication every week. He got himself so worked up about it that he started gagging each time he took it 😢. And due to the Covid situation two of his scheduled face to face consultant appointments, at our local hospital, were transferred to phone consultations. Not ideal, but understandable.

We had noticed that a new small patch had appeared on his back and we were waiting for the appointment to see his specialist at Great Ormond Street Hospital (GOSH) to discuss our concerns. However this too was postponed until November. Knowing that the spread of the condition could cause him problems in later life, our Daughter contacted GOSH about our concerns and after emailing photos of the new site, an emergency appointment was arranged.

Sadly they weren’t happy that the oral medication was working well enough, and placed him on another four week course of steroids. These make him very emotional and angry (almost hulk like 😡) and incredibly hungry, giving him the nickname starvin Marvin. The Consultant was also concerned that it was spreading across his knee joint, which can affect future mobility. Much to our dismay he now also has to have the methotrexate via injection every week and will need regular physiotherapy.

The meds’ and sharps bin were couriered to us. Mum and I were both a little anxious when we saw the size of the epipen. All Mum had to do now was arranged for a visit from the Community Nurse, to administer his first dose and show us how to do it ourselves 😬

She arrived, as arranged two weeks ago. We delayed telling him what was happening until that morning, as we didn’t want him worrying too much about it. He’s very used to having blood taken so it was explained it would be fairly similar. He was a little nervous and pacing the hallway, looking for reassurance from everyone until she arrived.

She was so lovely and put everyone at ease. She had a dummy epipen to show our little man the procedure. As she placed the actual epipen on his leg he did say “ow ow” in anticipation, but a few seconds later it was all over and he hadn’t felt a thing. Then he was off to play with his twin brother. He said afterwards he’d rather have that than drink his meds! That said it is a stronger dose and it has made him quite sick the following day. We are hoping taking anti sickness drugs will ease that for him.

As he has to have bloods taken every two of weeks, the nurse visited last week to give him the jab, which he was quite happy with, and is calling again today to administer and take bloods. She will continue to do so for as long as we feel we need her. At some stage I expect Granddad, a retired Paramedic or his Sister, who is hoping to start her nursing training in September, will administer the medication. His Sister is currently also training to take bloods, so who knows she may be able to take his as some point too.

We are very proud of our brave little soldier, who with his brother turned seven last week, for coping with the situation so well.

Our hope, very much, is that this round of treatment, will kick the condition’s little ass, turning it on it’s heels, without leaving him with any lasting effects.