Friday, February 26, 2010

The final spots

The appointment yesterday went well. They both had about 5 or 6 spots treated but both of them only had one "new" spot we were just being on the safe side and treated anything that could have possibly been a molluscum in disguise.

The big news of the day was that PuffyFingers has made it over the 40lb mark. She has been hovering around 39lb for what feels like months. Yesterday her weight was 41.2 lbs. So not only did she get past 40lb she blew through it into 41lb. What has the girl been eating? Lead?

Thursday, February 25, 2010

Keep your fingers crossed

We have a dermatology appointment this afternoon for both the girls. I'm hoping that it will be the last one; after all we've only be going for a year...

At my last spot check on Sunday I could only find 1 new spot on LMI and no new ones at all on PuffyFingers. If we can whack the new one and the old ones do actually disappear we'll be done with Molluscum Contagiosa.

I'm also hoping they can have a go at LMI's verruca (US: plantar wart). Having a child that's allergic to salicylic acid is a right pain in the bum as that's the standard treatment for verrucas. Chiz, moan, drone.

I'll update this evening to let you know how it went.

Tuesday, February 16, 2010


The girls and I are staying here: It's jolly pleasant. If it were wet then it would be a bit more awkward, but walks to the beach and the park are a pleasure in the weather we've got at the moment. Yesterday morning I was even concerned about too much sun on pasty white faces.

The house we're staying in "The Perry" is very small and cute. It has a wendy house quality that leads to pleasure in playing in 5 year old style while actually cooking and cleaning. It has one drawback - a spoon shortage. How can you furnish a house without teaspoons or small wooden spoons? Perhaps the owners never cook in saucepans or make tea?

The spoon shortage is all very Eddie Russett. If you don't know who Eddie Russett is you need to read Shades of Grey by Jasper Fforde. If you work out where Rusty Hill is please let me know as it's driving me bananas and I only have another 13 days to get in my answers for the quiz.

It's 10am in the morning. Just thinking about getting dressed. I love holidays.

Fortune telling

I see an MRI in the future.

The hospital rang yesterday and failed to get hold of us as the girls and I are at the beach and the OH was at work. The OH picked up the message and passed it on yesterday evening in the girls bedtime call to Daddy.

I called this morning from the house phone. We're so far out in the sticks that my cell phone has zero reception in the house or anywhere in the village. That's AT&T for you. There is one spot on the beach where you can get intermittent reception so I'm getting all my messages in a daily download when we go to see the sea.

The lovely nurses have just called back. The rheumatologist has spoken to the facial surgeon; they can't tell from the CT scan whether the extra space in the jaw is due to inflammation from the arthritis or some sinus thing. So we have a plan - carry on with the Enbrel - if it is arthritis that's the best thing we could do anyway, and in 2 months time Puffy will have another new experience - an MRI scan. The MRI will show in much greater detail exactly what's going on in that jaw joint.

Saturday, February 13, 2010

Good news all round

Blood test results were good. The liver emzymes are both back into the normal range. No anaemia. Sedimentation rate was a tiny bit up; normal is below 10, Puffy was at 11. She's got a cold and that probably explains the slight elevation.

Today's injection went really well. No screaming at all. We were back to the same procedure we had with the methotrexate. What a relief!

Thursday, February 11, 2010

Tom-ah-to, Tom-ay-to

Conversation with LMI

Me: Did you have a good day?

LMI: Yes, we had Tom-ayyyy-to soup for lunch.

Me: Tom-ah-to soup, that's nice

LMI: No Mummy, Tom-ayyyyyyyyyy-to

Me: But I'm British and I speak British English. You and PuffyFingers speak American English at school but British English at home.

LMI: Mummy! The soup was American.

Check up day

Multiple appointment day today. Two for PuffyFingers herself; Dermatology and Rheumatology. One for LMI, dermatology.

Dermatology went well for both girls. I think we might be winning the war on the molluscum. I don't think I've ever posted about the fun we've had with molluscum contagiosa. I'll have to explain all sometime.

Rheumatology was mostly successful too. All joints seem to be clear. I asked lots of questions about the jaw and I got to see the CT scans. Turns out it's mostly good news. The surface of the bone (corti something) is growing back nicely. There is a small dip on the upper surface of the left side of the jaw bone which is the "destruction" referred to by the facial surgeon. The only question mark is the space between the upper and lower jaw is looking very large - larger than it should. A large gap could mean increased synovial tissue which could mean arthritis.

The rheumatologist is going to speak to the facial surgeon. Hopefully it's nothing and will mean no changes, but if there's any questions we might be heading back over the lake for an MRI.

In other news: They took some blood to check that the liver is returning to normal after the methotrexate. Results expected tomorrow.

Sunday, February 7, 2010

An unanswerable question

Yesterday's injection went relatively well. There was screaming; but following all the advice from ice cubes to coughing (thanks Richard) meant that the duration of the screaming was considerably shorter and several decibels lower than last week.

Puffyfingers did ask the unanswerable question though: "Why Mummy? Why do you want to hurt me?"

I stumbled through all the usual trite answers, but it still seems to fall short of a decent explanation.

Thursday, February 4, 2010

In which I get stressed

We've now done 3 injections of the Enbrel. The fourth will be on Saturday. It's not been going well. PuffyFingers has screamed like a banshee during the injection and has made even more of a fuss than usual about having the injection. As she's normally rather stoic about pain I've been a tad concerned. Last night I lay awake trying to go to sleep and the thought hamster wheeling around my brain was "It's Thursday tomorrow, 2 more days until injection day".


When the injection is looming in my head it's not acceptable. Let alone whatever it might be doing to PuffyFingers.

So this morning I phoned the hospital. I left the usual detailed message on the nurse helpline. I've now called it so often I can recite all the standard information:

"It's Andy Fingers calling about my daughter PuffyFingers, that's F I N G E R S. Her date of birth is 11-06-03. She sees Dr Blah. Her medical record number is 123456. My phone number is 425 555 1234."

Then I launched into my rant:

" I can't do another injection with her screaming. I think my eardrums are getting damaged. She says it hurts so much more than the methotrexate. What can we do to make it less painful?"

Then I wait for them to call back. And wait. And wait. Normally they're really good and call back in minutes. But this went on for more than an hour. I was desperate for coffee. If I left my desk they'd phone and then I'd phone back and an elaborate game of phone tag would evolve. Then a saviour arrived in my office and offered to get me a coffee - Hoorah!

I'm extremely thankful for the coffee bearing angel (thanks Hank!) because sure enough the hospital phoned back while the coffee was en route.

It turns out that Enbrel does sting. Or rather the preservative they put in the ready made syringes stings.

Query: Why didn't they tell me this before?

Anyway we have a plan. We're going to move to the powdered version of Enbrel that we have to mix ourselves before the injection. The powdered version does not have the same preservative and therefore does not sting. The prescription for the powdered version is being called into the pharmacy. I wonder if it will have be specially approved by Steve Ballmer this time?

The mixing sounds rather fun in a mad scientist sort of way. You have to squirt the liquid from the syringe into the powder then very carefully mix it and then suck it back up into the syringe. The protein chains in the drug are so delicate you shouldn't shake it as that will cause them to break down. It appears to be the medical equivalent of nitroglycerine, one false move and it will all FDGB (Fall Down, Go Boom).

This Saturday we'll have to use the last prefilled syringe. We'll ice the injection site before and after and use the topical lidocaine and prilocaine (numbing cream). According to the manufacturers if you inject it really slowly it stings less, but it prolongs the lesser agony. I'm going to let PuffyFingers choose. Long and a bit painful or short and really painful; that's a tough one.

I'll insert ear plugs.