14th July and all is well

I'm pleased to report that all is well on the JIA front. PuffyFingers seems remarkably unpuffy and is flourishing. This Enbrel stuff is the business. We have a check up tomorrow, everything crossed that my parental opinion is not utterly wrong (as has happened in the past).

LMI has turned 5 and is even more entertaining than usual. She still likes being called Daisy. But seriously, Daisy Moss? It sounds like the latest garden centre hybrid. At least it's not Pete.

I am fine and so is the other half. He's recovering from a week on call. Apparently being on call when you're in your twenties is very different to being on call when you're nearly 40. Over the week he rarely got home before 11pm and was called out on different days at 3:30am, 4:20am, and 2am. The 2am call came the day after the 3:20am one, so he'd got about 3 and half hours sleep one night to be followed by 2 hours the next night. It was just like having a newborn in the house again.

Goldysocks and the Librarians

Once upon a time there was a girl with yellow hair called Goldysocks. She went to the library. She borrowed all the books.

When Papa Librarian came back he said "Who's been using my books?"
Mama Librarian said "Who's been using my books?"
Baby Librarian said "Who's been using my books; and has used them all up?"

Then Goldysocks brought back the books and ran away.


Who needs external entertainment when you have a 4 year old at the breakfast table?

Poor Little Cinders

Picture the Fingers household this morning...

I was zooming around unloading the dishwasher, making a packed lunch, making a cup of tea, finding white socks for school*, etc.

PuffyFingers was tucking into a bowl of Cornflakes.

LMI was in the larder.

Me: "LMI, come out here and bring the cereal you want with you."

LMI emerges and deigns to sit down.

LMI: "Where's my breakfast?"

Me: "In the larder, I asked you get the box of cereal out while you were in there"

LMI: "It's just not fair. You treat me like Cinderella and make me do all the housework"



* Query: Why do we never have clean white socks despite the fact that I know I bought at least 12 pairs last August?

Playing statues

I've just spoken to the radiology department and we're going to try doing the MRI without anaesthesia. Normally a 6.5 year old would get knocked out, but everyone thinks PuffyFingers can manage to be still. I'll certainly hope so. She's done really well staying still for CT scans but this is a lot longer and a lot louder.

She gets to take a CD with her to listen to while she's in the machine.

I asked if I could stay with her as I have pins in my ankle and they said that would be fine. Really?

MRI booked

After a little bit of phone tag (who books an MRI of a potential arthritic jaw? The Rheumatologist or the Maxillofacial Surgeon?*). PuffyFingers MRI scan is all booked up. She'll be heading in on 15th April, MRI at 11:15, facial surgeon appointment afterwards.

I'm unsure right now whether they'll want to try with her awake and keeping really still or if they'll knock her out. We'll find out soon. In the meantime I've discovered lots of videos on YouTube about preparing your child for an MRI. The wonders of t'internet.

If she stays awake then a parent is allowed in the room with her. The parent must have no metal on them. This could be problematic. I have two pins in my left ankle from an incident involving a rock and a parachute. They've been in there so long I rarely think about them (cough... mumble... 19 years). I strongly suspect that my two pins are going to stop me from being with PuffyFingers.

The OH will just have to do the caring parent thang. This could be fun...

* It's the maxillofacial surgeon

8pm and all's well

PuffyFingers is totally back to normal, not a limp in sight.

She gave the cold to me. I was utterly wiped out for 48 hours, I even took the unheard of step of taking a day off work. I normally manically hoard sick days for when I need them for child related time off. I'm not surprised PuffyFingers was limping; I think I was, and I don't even have arthritis.

I have thoughtfully passed the lurgy onto the OH and young LMI also appears to be going down with it. The OH has also had to take a sick day; and is presently laid out on the settee (sofa, couch, davenport or whatever else you want to call it) watching QI on the internet.

I'm waiting to see what shape LMI is in when she wakes in the morning. It's all fun, fun, fun in the Fingers household.

I may have a teeny bit overoptimistic

Hello,

PuffyFingers had a harder day with her knee. I gave her Tylenol at 1:30 and we have done her rice bag a couple of times. She has been hopping so she doesn't have to use it. She is at the front desk with a rice bag and books. I really hope she feels better soon,

Lovely Kindergarten Teacher
Lovely School

Don't panic Mum

This post is especially for my mother who will read the last post, have kittens, and immediately pick up the phone to call me.

PuffyFingers is fine.

She was still limping this morning, but no pain, no swelling, no heat. She's definitely coming down with a cold though. I think the stiffness is just related to the cold; reactive arthrits. She's done this before. If the stiffness is still there once the cold has gone, or if it gets much worse then I'll be calling the hospital.

Don't Panic.

The morning from hell

Yesterday morning was awful. On a scale of one to horrendous it was at least a ghastly.

On Tuesday evening LMI had a swimming class. When I picked the girls up I noticed that as PuffyFingers came to the car she was walking strangely. I made a mental note and carried on. At the swimming pool it was again obvious that PuffyFingers was limping very slightly. She was holding her right leg a bit too stiffly and therefore looking uneven when she walked. I asked if there was any pain but she was perfectly happy and we had lots of fun in the pool. She complained of a headache when we got home and a stuffy nose. I provide some paracetamol (Tylenol), and some food, and she just laid down until bedtime.

Wednesday morning comes. My waking thought is to watch PuffyFingers as she gets out of bed as any stiffness will be most apparent after lying down all night. Sure enough PuffyFingers is hirpling (limping). I check if anything hurts - no. I check for swelling - no. I check for heat in her knees - no. I take her temp - a wee bit up but certainly not a high fever. So we proceed to breakfast.

The normal procedure in the Fingers household is for me to get up, washed, dressed, breakfasted and to help the girls with all of this then I dash out the door to get to work by 8am while the OH drops the girls at school and daycare. But this particular day the OH is dead tired; he's on call for work and didn't get to sleep until 3am so he asks if I'll drop the girls off.

I yell the change of plan down the corridor as the girls are dressing and then start chivvying them through a quick breakfast. PuffyFingers is not happy. We have tears because she doesn't understand why I'm in a rush. I'm trying to get to work by 9am at the latest and they need to get their skates on...

Tick tock...

While breakfast is being consumed I write an e-mail to work saying I'll be late and also compose an e-mail to PuffyFingers' teacher explaining that PuffyFingers is limping and might need Tylenol (paracetamol) and her rice bag during the day. PuffyFingers approves of the mail and I send it. We all bundle into the car.

Tick tock...

Once we get to school PuffyFingers asks me to also tell Miss Mary (the receptionist) that she might need Tylenol during the day, so I do. Miss Mary then checks that we still have enough Tylenol in the medicine cabinet and like Mother Hubbard the cupboard was bare.

Tick tock...

I drop LMI off at daycare.

Tick tock...

I zoom down the road to the nearest petrol station with a little shop. Buy a mini bottle of Tylenol for the same price as a big one at any other shop. Get back in the car. Look at the box. It's very dusty. Check the bottom. It expired last October.

Tick tock...

Back to the shop get a refund, find out where the nearest supermarket is. Drive to supermarket. Dash inside, find medicine aisle. Look at shelves. Spot empty space where Children's Tylenol should be.

Tick tock...

Stand in supermarket thinking rapidly. She can have Ibruprofen? Another gap on the otherwise stocked shelves. Can we do infant tylenol in a dropper? No, dosages don't go up high enough. Can she have the tablets? Check the box, dosage starts at 49lbs. With her recent weight gain that's not inconceivable, she's just 7.5 lbs too light. She'll have a maximum of two of these and then I can adjust the dosage this evening with our normal liquid Tylenol if necessary. I'm not happy though - should I really deliberately overdose her?

Tick tock...

I decide some medication is better than none. I pick up the box of tablets and go to the check out. On the way to the check out I notice an end of aisle display about the cold and flu season. Oh joy of joys, there's a bottle of the normal Children's Tylenol.

Tick tock...

I put the unnecessary tablets back on the shelf. Pay. Drive to school and drop off Tylenol. Drive to work, get caught in way more traffic than I'm used to. Dash into the building.

I enter the meeting room at 9:11am. Not bad.

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?

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.

Holiday

The girls and I are staying here: http://www.seabrookwa.com/ 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.

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!

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.

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.

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".

Enough!

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.

Truth or lies

Truth or lies?

Fact or fiction?

It sounds horrible but the most difficult thing about being PuffyFingers parent at the moment is knowing when to believe her.

As a child did you ever exaggerate the symptoms of a cold, or a tummy ache? Especially to get out of something that you didn't want to do? Maybe you didn't want to go to school when you'd not finished your homework? I think most people will know what I'm talking about. I remember hearing on the radio in a listener's true confessions spot of one child who actually had their appendix removed because of an entirely fictional tummy ache.

PuffyFingers has discovered early that telling us something hurts will lead to:

• Tylenol - which she likes. Children's drug manufacturers walk a difficult line. The medicine must be palatable enough that a child will swallow it; but not so good the child wants to eat it for dinner.
• Questions. "Where does it hurt?" "Put your finger on the bit that hurts" "How badly does it hurt?"
• Possibly getting out of some activity.

Last weekend we had tears at football over the sore finger. This weekend we had reluctance to even go to football; the reason given was "My knee hurts when I run, Mummy"

Hmm, I think. Two weeks running with a fuss about football. Maybe this is a football thing and not an arthritis thing. She's in a class with all boys, most of whom are bigger than her and a lot of them are better at football than her (Puffyfingers doesn't like not being good at things, and has been known to persist to the point of injury to master something). I give her Tylenol, just in case. And we go to the sports hall anyway as LMI also has a lesson. Then we spend 15 minutes sat at a picnic bench in the sports hall...

I ask her if there are any other reasons why she doesn't want to play. I talk to her about the importance of telling me the truth so that I know that I can believe her when she needs me to believe her. I tell her that if she doesn't like football for other reasons that's OK and she can tell me. I will not be cross with her whatever she tells me, as long as it's true. Then I give her a choice:

1. I can go to the desk and cancel all her football classes, and try to get a refund. She won't have to ever go again.
2. I can go to the desk and ask if there's another class available; with either more girls or a less experienced group.
3. She just goes and plays, and if her knee hurts badly then she can come off the field and stay with me to watch LMI's lesson.

She chooses number 3.

She appears to have fun. She does lots of running with no obvious limp or sign of discomfort.

And I worry and hope I did the right thing.

Cinema

I went to the posh cinema in Redmond with my Mum and Dad this evening to see the George Clooney film, Up in the Air. Very depressing. It's billed as a comedy. I must have missed the funny bits.

And on the finger front: other than occasional complaints of pain there are no obvious signs of anything dodgy going on.

Is it or isn't it?

We did the first Enbrel injection yesterday, it wasn't the best experience ever. You have to stick the needle in and them pull back on the plunger slightly to check you haven't hit a blood vessel. This means far more time with the needle in the skin and not our usual get it in, squeeze, and get it out as quickly as possible. I strongly suspect that we'll just skip that bit next week and assume we've not managed to hit a blood vessel.

Meanwhile, I'm wondering if the arthritis is back in one of PuffyFingers fingers. On Thursday she went skiing with the school. (Her school does skiing as their PE during this term, is that cool or what?!) On Friday morning I found an e-mail from the parent of Pip's best friend, the friend's Mum had gone up to the mountain as a parent helper. PuffyFingers had been complaining of pain in her finger on the mountain and had been in tears.

PuffyFingers had not mentioned a word to us. I asked if anything hurt on Friday evening, and everything was "A1" according to Herself. I didn't actually look at the fingers myself - bad, bad mother.

On Saturday morning it was football practice. PuffyFingers had a meltdown when she got on the pitch. The coach was utterly bemused as she was blubbing that her finger hurt but he couldn't work out why that was a problem in football. Then I looked and sure enough the 4th finger (ring finger) on her left hand was looking a bit puffy between the top and middle knuckles. So I gave her some Tylenol (paracetamol).

Note to self: Buy shares in whoever owns Tylenol, I buy enough of the stuff that I should be getting a return on my purchases.

PuffyFingers hasn't complained of pain since and when asked says it's OK. The swelling seems to have mostly gone down, and I'm now in the familiar position of wondering if I imagined it in the first place. I shall continue to watch and wait.

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...