A couple of weeks ago, as we were talking about him starting his new medicine soon, the impact of this current flare up on M became evident as he sobbed in my arms “What’s the point Mummy? The medicine won’t work because none of them are making me better”.
To hear that your 7 year old is feeling that low and despondent simply breaks your heart. I struggled with knowing how to encourage him to try yet another medicine, knowing that so far our 2 year journey hasn’t waved the magic wand we’d all been hoping for and, whilst things are so much better than they were back then, there’s still an uphill struggle to face.
The biggest battle was finding a way for M to take it. He has to take this one 4 times a day, which means I have to send it into school and can’t send it in its capsule form because he finds that too difficult to swallow, though he continues to persevere to take it the “grown-up” way. The registrar at GOSH suggested we broke the capsule and mixed the powder into a drink or his meal. The taste is vile and tainted everything we tried. He didn’t like it mixed into his food or drink and I was left scratching my head about this one.
As I sat at the kitchen table wondering how to avoid pinning M to the ground and forcibly pouring it into his mouth – don’t laugh, I’ve been there before – I knew where to seek the advice I was after. Thanks once again to the amazing FABED community, I got a great suggestion which would not only make it more palatable for M, but also easy for the school to administer.
A spoonful of jam into which you mix the contents of the capsule is an ideal M-sized mouthful and one that he’s willing to take. Grandma’s home-made jam, sent all the way from Canada, is the perfect vessel for his new medicine. He loves Grandma’s peach jam anyway, but his preference for his medicine is strawberry. Fortunately, a care parcel arrived at the beginning of July containing 3 new jars of the strawberry elixir and that will certainly help.
The only question now is, having discovered the secret to successful medicine-giving for M, just how long this little lot will last?!
Pingback: Proud Mummy moments | M's 7 year journey
Pingback: This summer | M's 7 year journey
Pingback: Medicines galore! | 7 years to diagnosis
Pingback: Round Two: the Pellet study and other adventures | 7 years to diagnosis