Cast number 9

We had a very full and wonderful weekend (did LOADS and J was very smiley and happy). If I have time I have some nice photos and comments I'd like to write up.

However, nights have been a bit rough (we've been up a fair bit eg 3pm, 4pm, 5-5.30pm) and J was very tired yesterday (Monday) so the bathtime ended in tears. The main reasons he got upset were 1) he's v tired, 2) I wouldn't let him have the hairdryer in the bath (!!) and 3) I insisted on washing his hair (once every 2 weeks is not exactly frequent as it is). Felt a shame though - I look forward to our fortnightly bath so much and it ended with him wailing to get out...

Apart from that, nothing terribly different from other cast removals/castings.

He was very upset about 1am this morning for quite a while and I ended up taking him into bed with me (something I haven't done in a long time). Nice to get extra cuddles with a squishy baby. Such a different thing to hug a squishy baby from a hard cast. I don't notice it usually - I've got used to just stroking his head rather than rubbing his back when he's upset - but feeling the contrast when the cast comes off is... well, it's hard to put it into words. We've had nearly 6 months of casting now. A third of J's life. With a hard non-squishy baby...

All I can say is that I really really really miss hugging my squishy baby...

The sensible parent part of me knows that it's for the greater good. The rest of me misses it like mad.

He was very tired when we got up (about 6.45) and it made the casting quite difficult as he would NOT stay still.

He was offered the choice of purple or red cast (I showed him the packets) and he pointed to red. No idea whether he understood that he could have a purple one if he wanted it - but he's usually fairly good at making choices like that (eg with his wellies, he was adamant he wanted George pig ones even though at that stage he'd never seen the TV show) so you just have to accept that's what he's "chosen".

The plasterer said he had 3 other little boys coming that morning for similar castings! That number surprised me. We don't see anyone else like J when we're there. Plenty of older people with crutches, wheelchairs, bent over backs etc but no little boys.

The plasterer told us that our consultant had written to Oxford about getting a second opinion and he'd seen the letter but when I asked to see the letter I wasn't allowed. I just rang the consultant's secretary to ask for a copy and she said it wasn't Trust policy to let patients see correspondence but she said she would ask Mr M whether I could have a copy. I think Mr M said he'd send a copy to my GP when we last saw him - I need to check with her as well.

The plasterer was sympathising about the lack of progress and saying it's up to me if I choose to go elsewhere- but choose is a difficult word. Getting information about J's treatment or scoliosis is like pulling teeth! Actually, pulling teeth is quite easy in comparison. Painful but quick. I need a better analogy. What's painful and takes a LOOOONG time??

There are posters up at the hospital saying they'll be introducing car parking charges from November. Such a pain. It's currently costing at least £12 in petrol each time we go (60+ mile round trip - I think my maths is right?) and since it's fortnightly that soon adds up. I mentioned it to the kitchen staff and they rolled their eyes and groaned - apparently they will have to pay a flat staff rate (ie the same amount as the consultants). That sounds grossly unfair! I know that it's standard for hospitals to charge for parking these days- the local one is horrendously expensive - but with such frequent visits, some of them for very long afternoons (and I have no control over timings - we just sit and wait), it's going to be quite expensive.

After the casting J was keen to get to the cafe and very much enjoyed his breakfast of sausage, beans and mushrooms. He had a good nap on the way to the nursery too.

Mulling things over

I haven't posted about our not so good news since the blog on the day we were in hospital. It's "there" all the time at the back of my mind, but until we know more about when the 2nd opinion appointment will be, it feels quite remote.

We'll be back at the hospital next week for the cast - J is already asking about it and wanting a shower :-)

No real news to blog about on the scoliosis front.

The latest SAUK (Scoliosis Association UK) magazine (called Backbone) arrived yesterday. Very little in this edition about infantile scoliosis - lots about the adult and adolescent forms. Quite a bit about pain management (and 2 complimentary tickets to the Back Pain show at the Olympia next February). Lots about fundraising too.

I've been wondering about doing some fundraising - there's scope where I work for harnessing the energy of others (certainly with the students). I'm certainly not going to start running marathons or skydiving - but with a bit of imagination I'm sure we could raise something for the Scoliosis Campaign Fund* and maybe Ward 11 at the Birmingham Royal Orthopaedic Hospital too (the children's ward where J goes).

*(the Scoliosis Campaign Fund raises funds for the British Scoliosis Research Foundation and the Scoliosis Association UK)

The thing about fundraising is that it raises awareness too (I've seen Scoliosis Campaign Fund T Shirts which have "Scoliosis - have you heard of it?" written on them). That'd be useful.

photos

I would like to have more photos on here, but have got behind, so as a first tranche, here are photos relating to Monday this week (removing cast, x-ray, casting).

We went to Hatton Country World on Sunday - we have annual membership, so go a lot, but J is never usually allowed in the sand. Since I knew he'd have the cast removed later, we took full advantage of the sand and diggers.
 

"No I'm not wearing that silly hat - you wear it mummy" (he was quite happy for me to put it on...)

Can you see the lump in the middle of J's back below? The consultant said it didn't show up on the x-ray, so wasn't bothered- but there is now a lump where the cast was rubbing a couple of casts ago :-(

Monday - and we started off in x-ray. No photos of the actual x-ray (with J standing) but these are ones with us looking at the equipment. To a small boy who loves wires, tubes and machines, it's great :-) 

 In the ward 11 waiting room. J spent ages putting the people and turkey in the trailer in different combinations, clearly working out what fitted best.

 Late afternoon, time for the casting - despite J being very, very tired.

 Oh dear - not a happy bunny.

 J LOVES my hair and finds it very comforting. Not always the most comfortable for me - but given the circumstances, it was good to find something that soothed him.

 The cafe was closed so no sausage :-( but the plasterer did give J a lolly (never seen one before so was happy to choose it and hold it, but didn't know what it was!)

Home again. Back to the important matter of the electric whisk. J ADORES the electric whisk - so omelette has become a regular meal (he can also crack open an egg and cut up butter to put in the frying pan). He is very happy to sit with it on the tray for the whole meal and protests vehemently if I suggest putting it elsewhere.

 I chose a red cast this time. J can now say red (well, "-ed"). He's good at spotting red things too, such as red cars. I think he's quite pleased with it being red- I've made a fuss of it eg "what a smart RED cast". My attitude is that since this will be such a big part of our lives, we're not trying to hide it or anything - I want him to be proud of it and feel it's ok to wear it. Maybe we'll choose a different colour next time - there's a whole spectrum of them :-)

not good news

Perhaps I should leave this blog till tomorrow as I'm exhausted (long day), but I need to get these thoughts out of my system.

Today we went back to the Royal Orthopaedic for more x-rays, a consultation with the original consultant, Mr M, from there who we saw in June and cast number 8.

J hadn't had much of a nap at all (1pm for the x-rays cut right into his nap-time) and he found the whole afternoon very difficult. To the extent that a nurse took him away during the consultation because we couldn't hear ourselves talk... :-(   He cried a lot during the casting too. Poor thing.

J managed to stand still for the xray. Yay!  Standing gives the truest view of the curve because of gravity. I don't think anyone else in the room realised what an achievement that is for a 17 month old! Especially such a tired one. Grandad had one hand, I held the other and we put puppy (a very sweet cuddly toy from France) on top of the machine, so J was looking straight ahead. Phew. We'd had to wait for a long while for the x-ray because the consultant's handwriting wasn't clear and the radiographer wasn't sure whether J should be wearing a cast or not and wouldn't take my word for it - she wanted to hear the consultant tell her.

I've been going round the bushes so far... the crux of this blog is that the consultant said that J's curve is static. It hasn't improved (contrary to our last consultation). The consultant today thought it was good that both sides of the spine are growing at the same rate so even though J has grown in height, the curve hasn't increased with growth. However, the angles are the same. He still has a 30 ish degree curve (when pressed he said 32, but it can't be an exact measurement).

The whole story today was different from the previous consultations.

Initially Mr M had said in June that 85% of cases resolve and 15% of cases get worse (and might need surgery). Last time a different consultant, Mr G, thought J had improved. Now we find out he hasn't. I asked which category he is in. The answer: we don't know! So he might get worse. And that would mean surgery.

Originally we were told he'd have 3 or so casts then go into a brace until age 4. Today was his 8th cast. We will continue to cast for the next 4 months every 2 weeks until x-rays in February. And that's not the end of the story: the consultant said to carry on casting as long as he's growing. That's a LONG time. So when do we brace, we asked? That's depends on practicalities - as children get older they want time for other things eg swimming, plus there are practical issues like how hard it is to wash with a cast. It doesn't depend on a certain age or size. That's NOT what we were originally told!

Later, in the casting room, they were saying it takes 8 weeks to get a brace made, so by then J would be a different size/shape and then it wouldn't hold/help him, so it's best to do the casting rather than brace for as long as possible.

I asked Mr M about getting a second opinion. I didn't know how he'd take that - but he was fine - he said it was a reasonable request and he'd be happy to facilitate (ie write a letter). I'd like to see about Mehta (EDF) casting. We discussed places in England that do this and he said about Oxford because of getting there being easier than, say, Leeds or Great Ormond Street.

He spoke about the problems of Mehta casting - eg the original results achieved by Miss Mehta haven't been replicated elsewhere. Plus the child has to be put under general anaesthetic every 3-4 weeks (we'd have to go down to Oxford each time - and from what I've read on the web, it'd be a whole day each time to allow for recovery from the GA). Through applying more pressure, the spine might be straightened but it can deform the ribs/chest. This is why they have shied away from Mehta at Birmingham he said. They used to do it, but changed to soft casts in the mid 90's. He said that Miss Mehta was trained as a surgeon but put all her efforts into the casting, whereas anyone doing it here now has not refined their technique in the same way (I think he was saying that the results of the treatment depend on the person's skill doing it and there aren't people here who have the same level of skill as Miss Mehta managed to get through just concentrating on that).

The consultant was wanting to emphasise that not deteriorating is a positive (ie we don't need to intervene surgically at the moment). The change from one meeting to another is hard to deal with though.

His actual angle (well, the top one of the S shape) is 32 degrees. When I said that the previous consultant had seen a 3 degree improvement, this consultant said that you can't measure that accurately - you can't measure to better than 5 degrees (there is a 5 degree margin of error anyway) and he's looked at all the x rays and can't see any improvement.

He said that with a 30 degree angle there would not be any of the following problems: respiratory problems, heart problems, shortened life expectancy. If it's not in the lower back (and J's is in the thoracic area) then it would also not have an effect on jobs or family. This is from studies in Iowa looking at 60-70 years (perhaps 60-70 year olds? my notes aren't clear - need to check out the study). Iowa said that if a curve is under 40 degrees all the above are ok. If over 40 degrees there would be back ache.

I asked specifically about backache (see previous blog where found middle-aged person with chronic back pain after scoliosis had resolved) and he said that under 40 degrees, people have the same backache as people with no scoliosis.

[my thoughts on this since the meeting are: J's curve is 32 degrees, and that's nearer 40 than, say, 15 degrees. It wouldn't be logical to think that 39 degrees means there is no problem and with 40 degrees there's suddenly a problem, so it must be on a scale, so I would have thought logically that there might be more problems with J's curve (eg it could cause an imbalance - and Mr M agreed that that could happen)... does that make sense? I'll revisit that thought tomorrow when I'm feeling fresher and see if I can clarify what I mean]

He said that the aim of surgery or a brace is to ensure that lungs develop ok up to the age of 8 with the best balance between the spine and chest.

When we asked how long J would be in a cast, he said it depends on the curve and can be up to the teenage years... basically it's about managing the curve till J has finished growing.

Is there a possibility that J will have a straight spine? Unlikely - he said he had doubts about that. The best would be 10-15 degrees.

The facts are: J is growing and the curve is not correcting.

His caution about Mehta casting is that there needs to be enough care about the rib cage. (I've seen that some types have sections cut away).

He said that if J's curve deteriorates, there is no benefit to casting more and J would need surgery.

He is writing a letter so that we can have a meeting with Mr N (an Oxford consultant). You can't have 2 "masters" in the NHS system, so we would then have to decide whether to transfer to Oxford or stay at B'ham. He had no idea how long we'd have to wait. He said we could transfer back to B'ham if we wanted to later, but would then need to wait for an appointment (he was a bit funny about that - saying quite defensively that there isn't a waiting list, but then conceding that you may need to wait for an appointment. I got the feeling that waiting lists are such a sensitive issue that you can't call it that).

I asked about puberty - whether the curve would deteriorate then. He said the most rapid phase of growth is 0-6 years and if we can maintain the curve then, then it should be ok in puberty. Boys have slower growth in puberty (it's spread out over 3 years or so whereas girls' growth is over about 18 months and that can cause major issues).

So if we carry on in B'ham, we'll cast every 2 weeks for the next 4 months and have more x-rays in mid-February (and continue casting after that, but that would be the next look at how it's all going).

If we went down the Mehta route, there'd be casts and then probably a brace.

So it's not good news. Not exactly bad news either. But very different from how it felt after the last guy told us it was getting better.

There's a big, big decision ahead about whether we transfer to Oxford with all that that would entail. Regular general anaesthetic is a huge deal. Would it be more effective? Would we compromise J's ribcage in the pursuit of a straighter spine???

Time to dig deep. This is a marathon, not a sprint.

PS - I'm fed up with people trying to tell me that scoliosis isn't a big deal and that they know people (almost always women) who have it. It usually transpires that it's adolescent scoliosis. This whole issue about such well-meaning reassurances came up on a yahoo group I'm on recently. Infantile scoliosis IS a big deal. If the curve deteriorates, we're looking at possible problems with lung function etc - and maybe spinal surgery. We don't know yet. And yes, I am  fully aware that it's all relative - we see patients with leukemia each time we go to B'ham. J's problem isn't like that. But for me, as his mother, I'm carrying the responsibility of being his advocate and navigating the system as best I can. And the consequences for J could be huge. 

PPS When I kept pressing him about the current treatment, Mr M kept returning to talking about Mehta.I thought I hadn't made myself clear, but he then said that basically what J is getting with the soft casting (ie a bit of a squeeze, rather than anything more scientific) is as good as it gets with soft casting. Yes, the casts look different each time and it seems very haphazard with J squirming sometimes - and that's how it is. He didn't answer about results from other cases or evidence base for the soft casting.

PPS J has had 2 seizures over the last few weeks where his right hand went into spasm. It was painful and he rubbed his arm and wrist and looked sorry for himself afterwards. The consultant thought it might be a pinched nerve from the cast, but didn't think it was the scoliosis.

PPPS The consultant's notes from July are incomplete in the folder - apparently the tape didn't work. So the consultant today didn't even know about J's MRI scan results and was surprised when I told him that yes he'd had one and it'd come back clear... Doesn't exactly fill me with confidence. I wonder what IS in his notes??

I wonder what would be happening without the soft casts?? No way we can know. Would it already have deteriorated, and the soft casts are at least maintaining it??

Courage, ma fille, courage!

Et avec ca, bonne nuit!