Loose ends

It's Sunday morning, I'm enjoying a cup of tea and the last of the Christmas McVitie's Milk Chocolate Digestives. Here's the round up for the week...

Jaw
The facial surgery people called back on Friday: There's no sign of active arthritis in the jaw joints, all the "destruction" is in the same state as before. That's why they said it was the same as the last CT scan.

My reaction: Destruction? Seriously? I'm hoping this is just medical speak. But I fully intend to talk about it at the follow up visit in April and ask to see the CT scan myself.

Enbrel
The pharmacy called, they are still waiting for the insurance pre-approval. How expensive is this stuff? Is Bill Gates going to have to approve the application himself?

The drug itself is interesting. It's a human creation; we'll be injecting PuffyFingers with a technological equivalent of genetically modified crops. It's humongous molecule and every easily broken; it has to be injected as it would be broken down in the stomach before being absorbed into the body. Also we need to keep it in the fridge and if travelling will have to take a cool box with us. Getting that through airport security is going to be a barrel of laughs. It also means I'll have to clean the fridge - don't ask me why keeping food in the fridge in it's present state is acceptable but keeping medication is not.

It's a weekly injection like the methotrexate. The dose will be 25mg. It's going to be in prefilled syringes rather than the powder that we have to mix ourselves - this is a good thing. We are capable of doing it but anything that makes injection day easy is a good thing.


Life
PuffyFingers is delighted that she hasn't had an injection this week. I've pointed out that this celebration is fine as long as she realises we'll have to give her an injection of the new stuff as soon as we get it.

Tomorrow the OT and I are abandoning the girls with my parents (they've been staying with us since Christmas) and are heading to Whistler for a couple of days. It's raining in Whistler which isn't fun. But it's 3 days away from work which is fun. And I'm excited about seeing final preparations for the Olympics.

Confusion

I've had the call to say that the CAT scan of PuffyFingers TMJ (jaw joint to the uninitiated) is unchanged from the last scan and the surgeon is not recommending further surgery at this point. Hurray! I thought and after polite goodbyes put the phone down.

Then I phoned the OT and my Mum and told them.

Then I thought.

But, but, but, the last CAT scan was requested by rheumatology as they were concerned about the jaw. It was the results of the last CAT scan that led us to the oral and maxillofacial surgeon in the first place. So if this new CAT shows no change that means the jaw is just as bad as it was before the joint infection? I don't understand.

I've left a message with the clinic asking them to call me back as I am confused.

Must get out old lecture notes on CT scanning to see if that will help. I suspect 20 year old medical physics notes and text books are somewhat out of date though.

Idiotic Instructions

The lovely nurses have phoned through the prescriptions to the pharmacy (I never, ever, will be able to wrap my head around the US health system). It has to be preapproved by insurance; I take it this is subtext for "This stuff is fooking expensive, and we want to make sure you can pay for it."

Once we have our sticky mitts on the drugs then we have to head over to the hospital for a training session. Apparently there's more to learn, as we have to mix it up ourselves, not just fill a syringe. This seems strangely like something an addict would be doing.

Note to self: Don't make jokes about drug addicts to the pharmacy staff, they have an amazing lack of sense of humour about those sort of things, as I have previously discovered.

Anyway in parental overdrive - as per usual - I've been trolling the Internet for information about Enbrel AKA Entanercept.

(Query: How did parents do this before the internet?
Answer: Comes there none.)

And the best bit of info discovered so far: "Avoid being near people who are sick or who have infections".
Classic. Puffyfingers is six years old. She goes to school. School; that hotbed of bacteria and viruses (virii?). How on earth is she meant to "avoid people who are sick or who have infections"? I propose to wrap her in cling film (US:saran wrap) accompanied by scuba gear.

It's Enbrel AKA etanercept

3 posts in one day. I may never get over the effort.

The hospital has phoned; they want to swap PuffyFingers from Methotrexate to Enbrel.

http://en.wikipedia.org/wiki/Etanercept

The advantage:
Enbrel doesn't mess up liver function. So PuffyFingers' liver will start to look more like that of a 6 year old, rather than that of a 40 year old alcoholic.

The downsides:
Higher risk of lymphoma (that's cancer isn't it?)
Higher risk of severe infection. The stats for children on Enbrel are 1 in 100 per year will have a severe infection. I think the definition of a severe infection is one that requires hospitalization, if you know otherwise please let me know.

Off to get a coffee to recover from too many blog posts.

Andy Dunn, this is for you

I've been guilt tripped into updating the blog. It was pointed out at last night's pub quiz (where we were quite frankly pathetic) that I haven't updated the blog in, ahem, quite a while. As puffyfingers had an appointment this morning I thought I'd do it in my lunch hour while it's all fresh.

A potted history of the last few months. Puffyfingers has had recurrences of arthritis in her fingers and wrist. And also new flares in her right hip and her jaw. All of these were leapt on by Seattle Children's with their usual alacrity and she's had two rounds of steroid injections, in June and September.

Meanwhile we kept up the methotrexate. We've tried to up the dosage when she's had a flare but the blood tests have shown that Puffyfinger's liver doesn't seem to like methotrexate very much, so then we've lowered the dosage and she's had another flare. It's like one of those really annoying balancing games where you want to find the sweet spot where the ball bearing doesn't roll off the edge or down the hole.

So this morning we had another blood draw (much moaning and gnashing of teeth) and the results are in the post below. No sign of inflammation, Hurrah! No sign of anaemia, Hurrah! Liver Enzymes gone bananas, Boo! Hiss!

I'm waiting to hear from the hospital on what they want to do about the blood results, phone call expected this afternoon.

The other thing we had this morning was a check-up with the oral and maxillofacial surgeon who did the jaw injection. That led to a CAT scan. Phone call with those results expected tomorrow.

Spot the problem...

Surgery scheduled

Grovelling apologies. I haven't posted for two months and when I do it's a pathetically short entry. I must try harder.

Quick post to let you know PuffyFingers has surgery scheduled for Friday 5th June.

The next few posts will go back in time and give you all the information on how we got to this point...