When Ivy has the infusion of Intragam, she usually has a couple of days where she feels pretty ordinary afterwards.
Generally achy after a night of sweats and high temps.
After that, though, she gets an unmistakable boost in her energy. A period of time when she is just a normal preschooler, doing what all preschoolers do. She runs and jumps and dances. She plays hard. She laughs and sings and draws.
This lasts about three weeks and then we enter what we have come to know as…
The Meltdown Week.
We are in that very week right now.
Her energy levels fall, she eats less and sleeps more
and there are lots and lots of tears.
Lots of them.
The kids all sigh and huff and roll their eyes while I carry around the meltdown girl but we all know that it’s only for a week.
I mean, a week of sad beats a month of sad any day, doesn’t it?
Before the infusions started Ivy would cry all day, almost every day and when she wasn’t crying or clinging she was sleeping or lying on the lounge, still as could be.
It was sad and terrible and heart wrenching and it turned our lives upside down.
So what’s a little meltdown as her antibody levels decline?
For me, it is a reminder of what once was, what could be, if we didn’t have the IVIG.
For me, the meltdown week keeps it real.
Hi Kirtsy — Stumbled upon your meltdown post and it caught my eye. It must be one of those weeks. Our daughter seems to be in that mode now. It’s kind of a challenge when you have a 16 year old screaming and crying like a 2 year old! I end up feel emotionally drained afterward but then she is back to normal. One day at a time….
Hang in there!
Chris
That sounds rough! I’m so glad that she DOES get the IVIG, so that the worst of it is mostly a memory.
Chris – hugs. You hang in there too.
Kyla – It can be impossible but still, I’m so glad that it’s only the week.
I didn’t know that a melt down week followed an IVIG infusion. So much to learn. Such an amazing Mama and Ivy to learn it from.
*smooch*
It’s amazing how much their little bodies are put through on a daily basis. I know it breaks your heart to see her this way and am glad that the IVIG is continuing to be available for her.
Isn’t there any way they could give it every three weeks, or is that too much for her to handle?
Hi Tammy – thanks. I think the meltdown comes when her antibody levels decline and so she doesn’t feel as well as when the IVIG is in full effect.
Trish – We don’t have review until next week, so this is an uncertain time for us. Her last (of the six month trial) is on Monday and then we have to wait and see if she can have more. It was such a hard thing to have approved and the paed thinks she is doing well enough with the infusion every 28 days and I guess I feel as though it’s out of my hands when we have one guy sitting in his office making the final decision for us.
Some kids have it every couple of weeks but in Australia it seems that 28 days is the stock standard.
I’ll take that over nothing but of course, I would love to avoid a week of her feeling bad at all.
It’s seems to be such a fine balance between what I want, what she needs and what we can have.