J took forever to get to sleep (2 naps during the ride there and back didn't help).
I'm extremely tired...
But I'm going to post something now just to get it out of my system before I turn in.
I picked J up at the nursery just after his lunch so that he could sleep in the car on the way to Oxford. He only managed an hour's nap (usually 1.5 hours to 2 hours) so was a little grouchy on arrival. The afternoon appointments never seem to work as well as the morning ones.
(photos - they had quite a good selection of toys with dressing up costumes, sticklebrick, dolls house, garage... all sorts)
They weighed him and said he's 14 kg!!! On 7 November he weighed 12 kg wearing nappy and clothes but no shoes and no cast. Just 3.5 weeks later he's 2 kg more dressed as above but also with his cast. He has definitely put on weight - which I'm pleased about as he was 12.5 kg in August without a cast and so the half kilo drop between August and November wasn't great. He was well for a good 2 or so weeks before the next cold/cough hit him and that has clearly made a difference :-)
They also tried to measure his height, but he hates that and so it wasn't very accurate (about 84 cm - same as 3.5 weeks ago).
We were called in to see the consultant Mr N. almost immediately.
I had rung Birmingham and Oxford a few days ago to check the x-rays had been sent and received and got a very indignant reply from both ends (we sort that out, it's not something the patients or parents get involved with). But the consultant said he didn't have the x-rays... My heart sank. They hate you interfering in the processes, but we had this before when the x-rays weren't sent on. Mr N said we'd have a chat and then J could have x-rays there. Fortunately a nurse came in with the disk from Birmingham later in the conversation so J didn't need more radiation. I liked it at the end of our chat when Mr N asked me to help make sure the MRI scan and the relevant report get sent over (there wasn't a copy in the notes) - he understood that some chasing can be helpful.
We talked at length about the kind of serial casting they use. He (like Mr M in Birmingham) said that Mehta's results haven't been copied elsewhere** - and they don't call their casting Mehta casting. However, what he described was quite similar to Mehta casting.
**I've been emailing Heather Montoya, the parent who heads up the Infantile Scoliosis Outreach Programme (her daughter is now in her teens), and she said the results have been copied in the US hospitals where they do a lot of the Mehta casting and were trained by Mehta herself.
Heather wrote: "Miss Mehta was the pioneer of early Treatment (ET) and the only surgeon in the UK applying it. When she retired in 2000, the work literally died in the UK. We (ISOP) were fortunate to get her out to the U.S. multiple times after retirement and now countless children are benefitting from her dedication to progressive infantile scoliosis (PIS).
I would mention to any/all docs that J is seen by, the outstanding results children are getting in the U.S. by surgeons that were trained by Mehta and who are following her necessary ET principles. Remind them that ET is not like casting an adolescent. The goals are not the same is neither is the outcome. Remind them that Mehtas ET is harnessing the child's rapid rate of growth to train the young spine to grow straight gently, permenently and 3 dimensionally. Remind them that there is no risk of chest wall deformities if the windows are trimmed properly (widely trimmed mushroom shaped window in front, hole on the concavity side in back to help address rotation).
Please also inform them that ISOP would be willing to help them organize a hands on ET training tutorial with either Dr. Mehta herself or with the multiple pediatric orthopaedic surgeons on our Medical Advisory Board. I would also inform all of them that there are currently 45 paediatric orthopaedic surgeons applying Dr. Mehta's Early Treatment w/ specialized EDF casting here in the U.S. and experiencing the same outstanding results as Min Mehta, MD, FRCS herself... There would not be that amount if this gentle and effective treatment modality wasnt superiorly effective for infants/children with PIS."
Mr N said they have the correct EDF table which holds the head, hands and feet.
They do use windows front and back on the cast to allow for room for the lungs to develop ok.
The unit has just got approval for using magnetic growth rods in a trial. If J's curve progresses by five to ten degrees more then he would recommend using growth rods.
He said they would normally cast every 3 - 4 months (the Mehta technique says every 8 weeks for children below 2, every 12 weeks for children below 3). If it gets too tight they can split (bivalve) the cast he said.
He seemed surprised when I mentioned the timescale above (casting every 8 weeks) but I was able to give the author of the article I read it in (James Sanders is a respected orthopedic surgeon) and that helped me to not look like I'd just made it up!
He mentioned that he'd just come back from a conference in the US where they were talking about a new issue of "neurotoxicity" in younger children who have repeated General Anaesthetic. It is thought it may impinge on cerebral development. However, this is not substantiated. It does serve as a reminder that you want the minimum GA that's effective. On the ISOP message boards there have been discussions lately about how often kids are being cast and when one mother was concerned it was 9-10 weeks for her 16 month old, others said a couple of weeks extra would be ok and minor adjustments can be made if the cast gets tight.
When the x-rays did arrive, he re-measured the angles. Once again, we have new numbers. He said the top angle is 36%, the lower curve is 26% and the RVAD is 13%.
Measuring on the x-rays is not an exact science. The same x-ray was said to be 30-32 degrees at the top by Mr M. There's a 5 * margin of error.
Mrt N said he was hopeful they can control J's scoliosis with serial casting and hold it in a suitable position. He said the aim was not to treat it but control it. That is very different from the Mehta idea of growth as a corrective force. When I said this, he said that the cases where Mehta had success in correcting the curve where when they started casting very early on.
SCREAM!!!!!
It makes me mad when I hear things like that. That's what kept me from sleeping for night after night back in May/June. When you KNOW your child's condition needs action NOW, but you can't access it... it's very painful as a parent.
We had a diagnosis at 9 months, but then waited 3 months to see a non-specialist orthopaedic surgeon who referred us on. We had to go private to avoid a year-long waiting list at that point. We have now had 6 months of soft casting which doesn't seem to do very much at all (Mr N seemed very surprised at the technique - he didn't seem to think it would do anything either... I have never found anywhere at all that does the soft casting technique other than where we go...And J squirming during application can't help when trying to apply pressure!). So to be reminded of something I've known for many months - that time is of the essence in treating infantile scoliosis - is hard.
By the way, Mr N did use the W word. Yes - Waiting list! They do have a waiting list at Oxford. It's not permitted as a word in Birmingham. Mr N has put J on the waiting list - and said that he'll be marked as "soon" (I presume that means it's more urgent) and it'll be about 2 months (but we're not allowed to hold him to that).
I asked about Mr N's experience with the technique. He said he's been at Oxford 3 years and they see v few cases of infantile scoliosis - about 20 per year divided between 4 consultants. So he casts about 5 kids a year. He did some casting when he was in London before Oxford too. Not a huge amount really when you consider the doctors at Shriner's in the US who do so much.
About 50% of the cases he sees go on to growth rods, but we can't read much into that because it depends on how aggressive the scoliosis is (very individual).
All start with serial casting at the Nuffield.
If J's curve gets between 5 - 10 * worse then Mr N would recommend going to growth rods. However, Mr N said that it's really good that J is well balanced (his head is above his pelvis and his shoulders aren't lop-sided) and can walk so well. Looking at him you wouldn't know he had such a serious scoliosis. That means Mr N doesn't want to rush to insert growth rods.
He thought J would probably spend about 18 months in the casts and then go on to a plastic brace.
The problems he listed for children in these casts are: pressure sores, not tolerating the cast, itchiness, and breathing problems. If a child gets lots of breathing problems then they stop the treatment (eg chest infections).
He said it would go over J's shoulders (think American footballer) and down quite low compared with current casts, but the nappy would still be accessible.
I asked what the cast is made of and it sounded similar to Mehta - some plaster of paris and some fiberglass. When I mentioned the special undervests that I've read about (knit-rite ones that contain silver nitrate for anti-bacterial purposes) he looked at me very strangely then said "is that in the US?". It is in the US, but it makes sense to me to have something that will help the skin.Oxford use stockinet, just as we have at the mo.
I tried to ask about the risks of GA. He said they have a specialist paediatric anaesthetist who only does that. I tried to get him to quantify the risk - he looked at me as if I'm mad. You can't. They do spinal surgery all the time and so are used to using GA for kids.
I asked about how long the treatment takes and they are usually cast first thing in the morning and spend the day there - they don't usually need to stay overnight (this ties in with what ISOP parents have told me - it's only if there are complications that people stay overnight. They recommended that I take a couple of days off work for the first one, but after that, J should be able to manage with just one day for the casting and then back into the normal routine the following day).
He showed me pictures of a patient of his with growth rods. They can be lengthened by about 5cm using magnets, so the child simply comes back to clinic every few months rather than being opened up for surgery every time. They can correct the curve to some extent - although it depends on how bad the curve is. Once a curve gets to above 50* then it's beyond what can be corrected. It strikes me that the difference between 36 and 50 is not very big... in the more aggressive cases, kids' curves progress that much v quickly. That's why it's so important to keep monitoring J's curves.
My reaction:
Please bear in mind that it is now v v v late at night.
I think we will go with the more radical technique. I need to sleep on it, but it makes more sense to actually stretch and derotate etc the spine before casting. The other kids on the ISOP website all tolerate the technique and casts brilliantly. J has proved how adaptable he is already. We are late off the blocks (not our fault) but there is a lot going for this technique. I just hope these practitioners are experienced enough to make it a good investment of time and energy...
The practicalities of it all are a bit daunting. No bath/swim etc for 3 months at a time. That's a big change. I'd have to get good at sponge baths (we've been v lax in between casts mainly because 2 weeks isn't that long if you wash hands, feet, face and do thorough nappy changes).
I've been asked about the technique by others - the videos below show how it's done. I haven't actually listened to the sound on these, just watched the videos. Don't know if these are the best videos - it's too late at night to do much searching. If you google youtube and words such as infantile scoliosis and mehta casting, you get others too
clip showing Mehta casting of Haley (note the windows in the cast afterwards too)
news clip featuring Haley
news story incl clip showing the casting of Bryce
http://www.youtube.com/watch?v=rz0E3JfryoM
Just for fun - let me end on a lighter note.
You can buy cuddly toys wearing casts too :-)
No comments:
Post a Comment