I know, I know…… this really isn’t good enough and not up to my usual standard of keeping in touch with the world. We had a hectic end to the summer and I naively thought that once Imogen was back at nursery life would slow down…..umm maybe not!!
Anyway we had a fabulous summer, the weather was great and we made some lovely memories with friends and family, not to mention our successful charity day in August.
At the end of July Imogen started her new treatment of Adalimumab (aka Humeria). This is in injection form and is administered every other Friday. We started off with the first two treatments at the hospital, she really didn’t like it but with the help of the fantastic Paediatric Rheumatology team at Jenny Lind Children’s Hospital it was over quick and life could resume to normal. We then decided to continue with the injections at home ourselves, we didn’t anticipate the anxiety that came with this decision and just thought she tolerates the other injection so well at home and that it would be better to be in a more relaxed, natural environment.
OH HOW WRONG WERE WE!!
A fortnight later, at home, out came the injections. She sat and had her Methotrexate injection first, no problems whatsoever and then she noticed the second box and FREAKED out. We were organised and calm and did everything by the book but she was hysterical, shouting, screaming and crying , it was near on impossible to restrain her enough to even do the injection. Finally with 3 grown adults we managed to get the job done and it’s was extremely distressing for all involved to see how traumatised she was by the whole experience. Later that day Imogen was lashing out, angry and not at all herself. She also wet herself during the afternoon, something that she hadn’t don’t for months. This went on for days with her behaviour uncontrollable and wetting herself up to 6 times in a day, something wasn’t right. In desperation I explained the situation to her Dr and Nurse at a routine appointment that luckily fell a week later and on discussion it all made sense…..
When you break it down she is three years old and already going through so much, all of which she has tolerated so well with such bravery. Then she has a new injection on top of all that which she is frightened of and has three of her closest people holding her down to do it, in her home which is her ‘safe place’ it’s just tipped her over the edge and is a step too far. Therefore we decided it would be best that we administer this new treatment in hospital by a nurse specialist for the coming months to try and separate the two where possible. We have therefore been doing this for the past few treatments and it’s going much better. She is still terrified and as soon as she sets eyes on the injection packaging she freaks out, but we have got a very quick and discreet routine set up now with the help of the nurse specialists, it’s over quick and she gets a sticker for her bravery tin, so fingers crossed it continues this way going forward.
The treatment seems to be going well and we recently met with the Drs who are pleased with how her joints are doing at this point in time. Also a review with her Ophthalmologist last week was very positive, showing that the eye inflammation has improved so fingers crossed this is the Humeria taking hold. Also the eye pressure is nicely under control with the relevant drops. Now he explained how we need to slowly wean her eyes off the steroid drops to see if they can cope well without. We have everything crossed for this to be the case and therefore show that Humeria will be enough alongside the methotrexate to control the disease and hopefully head towards the road to remission.
Fingers crossed 🤞 we will keep you posted.
Imogen’s Wish 