The verdict

I'll go through the day in another blog - but the important thing now is what the consultant said:

The MRI scan shows all is normal:

"There is thoracic scoliosis concave the the right. No obvious vertebral anomaly seen. Normal appearance of the spinal core. No evidence of cord tethering. The cord terminates at L1/2 level. No evidence of a syrinx. Normal appearance of the craniocervical junction. No evidence of cord compression or disc prolapse is seen." 

There is no need for any further MRIs.

The consultant thinks that the curvature will resolve - possibly by the time J is 18 months old.

The consultant compared the x-rays from today (he had 2 - one on his back and one lying on his side) with the one from May 5th and thought there had been a drop from 33* to 30* since May. He said the chest one from Feb couldn’t be used to compare (it doesn’t show things well enough).

[NB the spinal nurse explained afterwards that there is a margin of error in the calculations for angles, so whereas Mr Marks said 38* and Mr Thompson said 33* for the May one, that isn't important. The important thing is the same person's comparison between May and now.]

If it does resolve now, there will be no consequences in later life.

So what happens next? We will carry on with the soft casts, changing them every two weeks and then J will have more x-rays in 2 months' time and another appointment with one of the consultants. He expects to see more improvement by then.

We discussed other things including Mehta casting but I will do a separate post later. He is not an advocate of Mehta casting - let's leave it at that for now.  

It is, I think, cautious good news. It was all couched in terms of "I would put money on [this being a curve that will get better on its own]" and "I think..." - but he's very experienced and he believes it will be one of the 85% of infantile scoliosis cases which resolve.

It could have been progressive. There could have been all sorts of things on the MRI. But instead it looks as though J might be lucky and have one of the "good" types of scoliosis which correct themselves (with a bit of help from the cast too).

I don't feel exactly happy - we're not there yet - but there is cause for relief about what it isn't and what it looks like it might be. Fingers crossed for good improvement by the end of September.....

update:
Just to say - I can't remember what he said about braces except that they're not as effective as casting for this stage (harder to get traction). Mr Marks seemed to think a brace would be necessary after the casts to maintain the spine until J is 4 years old. That was the best case scenario he gave. I will need to ask about that in a couple of months.

1st Oxford Early Onset Scoliosis Meeting 8-9 September 2011

I have come across an event for medical professionals that is directly relevant to J's condition that will be held in Oxford in September (the 1st Oxford Early Onset Scoliosis Meeting).

They have allowed me to register despite not having a medical background.

The programme on the first day sounds particularly interesting (see below). The Faculty who will be speaking include J's consultant and Miss Mehta (the oft-quoted consultant who specialises in casting).

So timely and so relevant!

I realise some of it might be too scientific and assume an indepth knowledge of medicine, but I think I will get a lot out of it even so. There are so few opportunities to access information and this would be up-to-date and not just what I find on the internet! The opportunity to speak to eminent people working on scoliosis will be invaluable.

THURSDAY 8TH SEPTEMBER

The Growth and development in the mammalian spine

0815-0830 Development of the spine
0830-0845 Update from geneticist
0845-0900 Respiratory implications of abnormal development of the spine
0900-0915 'what's the point? Is there more to life than an improved cobb angle?'

Congenital Deformity

0915-0935 Spine growth and congenital deformities of the spine
0935-0945 Neuro-axial anomalies
0945-1000 Surgical treatment of congenital spinal deformity
1000-1015 Surgical treatment - The Nottingham Experience
1015-1030 Coffee

1030-1130 Case presentations and discussion

Infantile Idiopathic Scoliosis

1130-1145 Incidence and Natural History
1145-1200 Plaster Jackets and Bracing
1200-1215 Surgical intervention

1215-1300 Case presentation and discussion

1300-1400 Lunch

1400-1530 THE DEBATE - Surgical options for Early Onset Scoliosis
                                    
                   Behrooz Akbarnia/Bob Campbell/Richard McCarthy tbc

                   Moderator Jeremy Fairbank

1530-1545 Coffee

1545-1730 Art Exhibition

1900-1950 Drinks reception/music recital in the Upper library


FRIDAY 9TH SEPTEMBER

Neuromuscular Scoliosis

0815-0830 Natural history of NMS
0830-0845 Outcome measures
0845-0900 Advances in medical management
0900-0915 Surgical treatment and outcomes
0915-0930 Best surgical strategies for sitting comfort
0930-0945 Coffee

0945-1045 Case presentations and discussion

Syndromal scoliosis

1045-1100 Medical intervention
1100-1115 Mesenchymal anomalies
1115-1130 Surgical considerations
1130-1145 Non-operative treatment

1145-1245 Case presentation and discussion

1300-1400 Lunch

Peri-operative Session

1400-1415 Best practice Anaesthesia
1415-1430 Infection and Bleeding
1430-1445 Neurological Injury
1445-1500 After surgery care
1500-1515 A Nursing perspective
1515-1530 Coffee

1530-1615 Where are we going?

A discussion on current gaps in our knowledge - What should research be offering us and our patients with Early Onset Scoliosis?

copy of x-ray from May, plus ponderings about the MRI results (due Thurs 28 July)

I've received a copy of the x-ray taken back in May this year. It shows J's curve very clearly.

The big question though is: what will the MRI results show on Thursday? It's an incredibly important day for us - potentially determining what the cause is and what the treatment from now on should be...

I don't know how to prepare myself this time. I've got all the questions I wrote a couple of weeks ago, but it all depends on the actual results.

The consultant we're seeing used to work there (he graduated in 1965) but retired - we're fortunate that he's come back to do extra sessions so we don't have to wait for months.

I've managed to get the application of the 4th cast re-arranged for Thursday as well (rather than Tuesday), so just the one trip to the hospital this week.

I'm looking forward to J's next bath - it feels like a lifetime since he last had one and he has started asking to have them. He puts lots of toys in the bath and tries to pull himself over the side :-(  A small price to pay in the grand scheme of things I know, but it makes me a bit sad even so because I want him to have one too, but have to say no each time.

MRI scan

A change of venue today - rather than the Royal Orthopaedic Hospital in Birmingham, we were at the Birmingham Children's Hospital for J's MRI scan. Basically all went well and we were very well looked after by all the staff, but J was deeply affected by the sedation and would not wake up, so we were there till the day unit closed at 6pm!

We had been asked to be on the ward for 11.20am for a scan at 1.20pm. J was not to have eaten for 3 hours before we arrived and we were told the sedation would be more effective if he was tired. We'd also been advised to allow plenty of time for traffic and problems parking, and that was very true. So we arrived about an hour early with a very hungry and tired baby!

Fortunately they had a great play area where we spent a happy half hour on the toys wearing J out even more :-)

 J enjoyed the fish on the ward too.

 Once on the ward, there was paperwork to deal with, but mainly it was a question of simply waiting (ie entertaining J). In some ways that's great - I love spending time with my little man - but when he's overtired and hungry, it takes rather a lot of energy!

I administered the sedatives myself using a syringe - the same as with nurofen. J loves nurofen, so was very willing to sit like a baby bird with mouth open and be fed - or rather he was for the first one, but the second didn't taste very nice and he was not impressed.

Then it was like watching someone getting steadily more and more drunk until he couldn't stand up any more and keeled over asleep. The monitor shown below was for oxygen levels in his blood and heartbeat. We couldn't attach it with him awake (he has v sensitive feet and was having none of it!), but no problem when he was knocked out.

At about 1.30 we took J down to Radiology in his wheely cot. The MRI scanner room is painted like a tropical island (as I sat for 30 minutes for the scan I had time to wonder who the artists for these things might be as all the hospitals seem to have walls covered in sea motifs. Do you think there are dedicated hospital wall artists who specialise in such things...?!).

The scanner is huge - see below - and extremely noisy. J had cotton wool and big pads over his ears. I had ear protectors. J lay motionless until right at the very end when he started kicking about, but thankfully they'd already finished. His vital stats were monitored throughout. The images were clear and we will be getting the results next Thursday (I hope!).

Usually children take an hour, maybe a couple of hours to wake up. J just slept on and on!

At one point, J was on his side and we noticed that his arm had gone a dark shade of purple! The cast was cutting off his circulation. It's true that he sleeps on his front usually, and to be in such a deep sleep probably meant he was like a dead weight with the cast pushed into his arm. Poor thing. The circulation did return, but it took a while.

Not one to miss an opportunity, I borrowed a pair of scissors and gave J a full manicure and pedicure. Fantastic to be able to get them all done without lots of kicking and screaming (he's not keen on nail cutting).  My tip for anyone else: think of what you'd like to use the time under sedation for and take what you need (nail clippers, nail file etc). I also washed his face and cleaned his nose!

Each nurse tried a different technique to rouse J - ranging from tickling his eyes and ears with the corner of a tissue, to tickling his tummy and wiping his face and neck with a cold, damp cloth. Nothing worked. After he'd been asleep for 4 hours (!) and we'd tried all sorts, one nurse said to just leave him for half an hour and then try. So we did - and afterwards she did her utmost to annoy him - tickling, lifting limbs...  and he finally awoke protesting!

Children who've had sedation are not allowed to be discharged until they've eaten and the little boy in the bed opposite was kept in all day because he hadn't eaten - but that wasn't a problem for J. We had read the Hungry Caterpillar just this morning and it was like a re-enactment: he ate his way through lots of ham, a mountain of cheese, one yoghurt, a rich tea biscuit, several grapes... and when we finally got home he polished off a heap of potatoes, mince and peas, 3 more yoghurts, a couple of jam sandwiches, a gallon of milk (ok that last one is an exaggeration, but it was a lot)... mainly with his eyes shut!

He was so dopey all the way to the car, and slept much of the journey (photo below of him shows he's still not-quite-there!).

So now it's just wait and see - what will the results reveal? I'm already going through different scenarios in my head in preparation for what might be shown and the questions/treatment we need to discuss with the consultant.

Here's hoping for a quiet night tonight (following on from the sedative) and a happy baby tomorrow (it can make them irritable for 24 hours).

Early Treatment (ET) with Elongation, Derotation, Flexion (EDF)

I keep coming across references to ET with EDF. It stands for Early Treatment (ET) with Elongation, Derotation, Flexion ( EDF).

There are casting frames which are designed "to assist the pediatric orthopaedic surgeon in correcting an infant or young child's scoliosis three dimensionally in a series of EDF plaster casts".   

The Elongation component provides gentle traction to elongate the spine.

The Derotation components allow the surgeon to gently stabilize and derotate the pelvis. 

The Flexion component at the top of the frame provides controlled, lateral pressure to the young patient's lumbar spine and allows the surgeon to correct/maintain lordosis.

During the application of J's casts (where he's awake and traction is simply hands pressing on the bandages) I have asked about traction frames, using general anaesthetic (GA)  and derotation of the spine and met with incomprehension. Yet here is a treatment that uses it.

There's a website about such castframes. The pictures look horrendous (I have to stop imagining my little boy on there). It's worth it if it corrects the curves!

I've been in contact today with a mother whose son had a series of plaster casts applied under GA at Alder Hey - I wonder how many other places in the UK use this kind of treatment? I believe the Royal Orthopaedic Hospital in Stanmore does. Is there anywhere close to us? How do I find out?

There's an interesting article mentioned on the above site which looks at the factors that influence when casting is effective and it concludes: "Serial cast correction for infantile scoliosis often results in full correction in infants with idiopathic curves less than 60 degrees if started before 20 months of age". We don't know yet whether J has progressive scoliosis - but he's 14 months and one angle is 38* the other is 26*. I want to find out as much as I possibly can about options if it is progressive. 

2009 - Derotational Casting for Progressive Infantile Scoliosis
           Journal of Pediatric Orthopaedics:
           September 2009 - Volume 29 - Issue 6 - pp 581-587
           James Sanders, MD., Jacques D’Astous, MD., FRCS


Lots of things to bring up at next week's consultation!



*** update: I've just spotted in the paper above the following:

"Double curves are problematic in that they may have a low RVAD except at the curve junction but are nearly always progressive"

RVAD is the Rib Vertebrae Angle Difference. The renowned consultant Mehta distinguished resolving from progressive scoliosis by using the RVAD - if it is 20 degrees or more on an early supine x-ray then it's more likely to be progressive. Mr Marks said this was out dated as a technique - but I wonder whether the double curve sentence in the 2009 article above sheds a different light on it. I was told J's RVAD is less than 20 degrees - but as he has an S-shaped spine, maybe that makes it a double curve and hence may be progressive despite the RVAD??

Cole and The Crooked Flower

One of the parents on an email group I belong to has written a book to explain scoliosis to children called "Cole and The Crooked Flower". What a great idea! Below is the blurb from his website:

My son was born in 2008 with a rare spinal deformity, Progressive Infantile Scoliosis.  Like many kids with this, his diagnosis was delayed due to physicians being unaware of the signs. Thankfully, with help from the Infantile Scoliosis Outreach Program we were connected with one of only a handful of US doctors trained to cure my son's condition.  After nearly a year spent in serial body casts, my little boy has a wonderful prognosis: he is CURED and they expect him to stay that way!

During his treatment, we wrote a children's book to help explain to young kids and their families and friends about the treatment. We even got a professional illustrator to donate her time and talents to illustrate this beautiful story!

The story is about a boy who finds a flower growing crooked and tries many silly ways to get it to straighten. In the end, a doctor helps him hold it in place with a straw so that it will grow straight and stay that way. The story is written to be fun for anyone, but also as a helpful metaphor to explain the treatment to any children going through it. Extra information in the back makes this clear to the casual reader, and can raise awareness that the cure is out there.

Our hope is to self-publish this book and make it available to families with children with this condition.  All of the profits from selling the book will go directly to the Infantile Scoliosis Outreach Program (ISOP) to assist in the physician awareness program so more kids are correctly diagnosed under the age of 2, when the treatment is most successful. ISOP also trains physicians to perform the necessary treatment, so families don't have to travel out of state or even across the country to receive care as many currently do. 

If we raise all $6,500 we are going to print an initial run of 1,000 books.  If we make more we will print additional books, allowing us to buy each book for a lower cost and have more money go to training physicians.  If we raise less money, then we will print fewer books. Some money from the initial sales of these books will be set aside to print additional books. 

Fab News!

The hospital just rang - J has an appointment with the spinal team on 28 July! They should have the MRI scan results by then too.

After all that fretting!

Great news to go into the weekend :-)

3rd cast

I've been telling J for a couple of days that he'll be having a real bath again on Monday and when it came to bathtime he fully understand what was happening and stood perfectly still and smiled as I started unwinding it. It was harder to unwind than last time (more of it was stuck to the stretchy jersey underneath) so I ended up just cutting it off.  It was so lovely to hold him and feel his actual back. I miss my squishy baby.

His skin was more fragile than after the first cast - slightly dry and blotchy. So I put on lots of E45 last night and this morning and that helped. He has raised spots on his front too - I queried this with the nursing staff at the hospital but as the spots weren't bothering J they said they were fine and possibly a heat rash. I'm not convinced that they're a heat rash - they looked a bit like his viral infection - but as J is ok in himself, I didn't say anymore.

It was a poor night's sleep. Maybe he was cold? I find it hard to judge what to put him in when we change from cast to no cast. Maybe it feels odd to him to be without it? He sleeps in a head-down kneeling position with the cast, but was able to lie on his side without it.

By the way, a friend has sent me a wonderful trio of CDs (this is a link to the product website) (Brainy Baby - Sleepy Baby, Dreamy Baby and Playful Baby). The Sleepy Baby one is a great help for getting J to sleep despite the complete change in our routine (no bath, no breastfeeding...). I would highly recommend them - they are enjoyable to listen to for adults as well and feature real instruments (I'm not keen on the Baby Einstein CD series which use synthesised and very edited versions of classical music). The Sleepy Baby CD is certainly very effective on me - it's hard to get going again in the evening after I've put him to bed as the music makes me feel very sleepy too!



Memo to self: although it's a 40 minute journey usually, we need to set off at least 1 hr 45 minutes before the 9am appointments, otherwise we end up grinding to a halt on the M6. I'm so glad I don't face a big commute on a regular basis! Fortunately J finds the lorries interesting if he's awake, though he usually ends up going to sleep.

I would have thought we'd be seasoned casters now, but the usual plasterer was away today, and the new one kept asking me to do what others had done in the past (eg put the towelling vest on him - which he doesn't like - and remove the stomach insert). I think I'd prefer to be the neutral party, just holding him and adding reassurance and hugs, rather than part of the whole treatment side, but maybe it doesn't matter to J. He cried a lot more today - and there are no photos as everyone there was involved in holding him still (anyway, you have seen how it works - it's just the facial expressions that change!). It seems higher on his front than the previous times. I wonder whether that will mean he gets more food in it? I hope it doesn't mean we have more problems keeping it dry.

By the way, I have found info on the web about the bandage used - this is a link to the product website. 

"A fiberglass casting tape that does not set to a completely rigid state, but remains flexible and soft even when it is completely cured. Scotchcast Soft Cast casting tape consists of a knitted fiberglass fabric impregnated with a unique polyurethane resin. Exposure to moisture or water initiates a chemical reaction that causes the resin to set. The finished bandage will retain its shape while remaining resilient."

We went to the cafe afterwards and J relished eating a sausage again like last time. J gets so much attention there - lots of comments on how cute he looked today in his outfit. I chatted to one of the volunteers (see photo below). She has been volunteering on the Oncology ward for the past 11 years, coming in for one day a week. She spoke of how inspiring it is being with the patients. It reminded me of when I used to volunteer for Hospital Radio when I lived in Southampton - we went out to the wards each time we were there to collect patient requests and that felt like the most valuable part of doing it. I thoroughly enjoyed co-hosting the Arts show "That's Entertainment" as I got free tickets to all sorts, but I would imagine there were weeks when there was no-one listening at all!!

I then went up to the children's ward to get some more information about J's treatment. They have a fab train/car area which J explored (literally! I was just talking to the nurse, turned round and he'd clambered on top of it - the cast certainly wasn't stopping him climbing).

I'd prepared a letter for the consultant, but wanted to see whether the Spinal Nurse was able to clarify anything too. Both the Ward Sister and the Spinal Nurse were very willing to help, but it felt quite frustrating even so - I'll give more details about why below. I feel I need to know more so that I can ensure I'm proactive when necessary, but I don't know whether I'm asking the right questions.

I feel conflicted - it's great that he's being treated now (we jumped ahead by having a private consultation to start with) and they're all very good - but is this the best treatment for J? Are there more things I can/should be doing?

I don't have the exact list to hand, but these were some of the questions - the sections in italics are my thoughts now having chatted to the nurses:

1.   What is the cast setting out to achieve? Is it to actively correct the spinal curvature or to hold the spine in place while J is growing? (hold it while we find the cause, though it might improve the curvature)

2.   Will it be necessary to have a series of MRI scans? If so, how often should they be carried out? (it depends on the results)

3.   Will this scan be sufficient to determine if the Scoliosis is progressive or will that require further observation? (probably not sufficient)

4.   What will be the next steps a. if it is progressive or b if it is not progressive? (need to ask the consultant)

5.   J has an appointment for his MRI scan next Tuesday. How much of the spine/brain/neck/hips should be the MRI scan cover? (the first x-ray J had was misleading because it didn't cover his whole spine and so we missed one of the curves - as Mr Marks has mentioned that the base of the brain can be part of the problem, it would seem logical to include that too. The answer was that the radiologist at Birmingham Children's Hospital knows what they're doing.) 

6.   I have read that scoliosis can also affect the alignment of the hips – do they need to be included in the scan? Should they be checked (or does the fact that he is walking show that they are normal)?

7.   I am aware that so far we only have 2 x-rays and that rotation of the spine and abnormal front/back curvature is not shown on x-rays. Will the MRI scan reveal rotation and front/back curvature? (from what I now understand, MRI scans are good for looking at soft tissue but not bones, so I don't think it will - I suspect we will need an x-ray taken from the side?)

8.   I have been trying to find out more about the technique that is being used, but have not found anything so far. What is the name of this technique and where can I find out more information about it? Is it being used elsewhere? Are there studies/research into this technique – if so, please could you give information.  (the nurses called it serial casting - but on the web this term refers to Mehta casting with general anaesthetic, traction and plaster casts. Nowhere can I find anything about soft casts)

9.   Will the serial casting and brace correct any rotation of the spine? (the plasterer today was simply squeezing J from the front and back while the bandage set. There is no subtlety - no referral to xrays to see where the curve is etc. The last plasterer said he could feel where he needed to apply pressure. But what about the possible rotation??? The nurse just asked whether I know there's a rotation. No I don't. And it doesn't seem to feature in any of the things that are happening to diagnose it!)

10. I understand that there is a waiting list for consultations to follow up the MRI results and so I wondered whether it may be possible to have another private consultation for that purpose as well as continuing J’s current treatment on the NHS? (the nurses didn't want to give a timescale - saying that if the MRI scan revealed something bad we would be called in urgently - but eventually I was told that the NHS waiting list to see the consultant to get the results is currently till DECEMBER!!!!! They are holding extra clinics on Saturdays to try and speed things up. It makes me feel sick to think that we will be carrying on like this for 6 months longer just because of a waiting list to see the consultant. If we can go private for that, it would be money well spent (I don't know if you can dip into both systems??? Do we have to have casts changed every 2 weeks and no bath or swimming until then??? That's not what Mr Marks originally said (3 soft casts depending on how things go and then a brace))

      I found out much more about the MRI scan too. I had been told I could go in with J, but apparently what they meant was that I could go into the room, not the actual scanner (they used to let parents go in and lie with their babies on top of them, so they didn't need sedation, but the simple movement of breathing was sufficient to create a blurred image and now they prefer to do sedation). I will be able to hold his leg. He's having sedation in the first instance. Sometimes that isn't effective, in which case he will need to return on a different day for a general anaesthetic (I can imagine the waiting list!). If I see he's waking up then I need to let them know! It'll be very loud and I will have earphones. J may have cotton wool stuffed into his ears and taped on.

      I haven't found information about the soft casting technique, but the Mehta casting websites and email support groups all emphasise the need to act swiftly with infantile scoliosis - that the watch and wait approach is not good. The outcome of what I was told today is that the current casting is really aiming to maintain the curves although it *may* correct it a bit. The Mehta approach is to straighten the spine. When the plasterer today told me that it was only a mild curve and she sees worse (and was implying that it'd be fine if he had a 38* curve for the rest of his life), I felt very frustrated. There aren't any alternatives on offer at the Royal Orthopaedic Hospital. They explain what they're doing, and say that the team of consultants has very good results. I don't know whether I should be pushing more or looking elsewhere or what. Or am I being too anxious? So hard to judge what's best - it's such a responsibility. I have no idea what a 38* curve (and the bottom 26* one - J's back is an S-shape) would mean in terms of back ache etc in the future. That does seem to be an issue among adults who had scoliosis as children. What angle is bad enough to affect an adult later on?

      I have noticed that this blog is getting hits from all over the world as well as the UK (lots from the US, Australia, Japan, Brazil, Denmark, France and Germany). If you are aware of other treatments or have ideas I would be grateful if you could let me know via the comments!

      I feel quite drained by today - when I'm with J, I am deliberately upbeat and treating everything as an adventure so he views the hospital experience positively. It's not that *he* has to be smiley all the time (that would be dreadful if I expected that) - it's important for him to know he can be sad or upset and that's ok. I'm sure there will be times when I can tell him that mummy is feeling sad today and it's because of X and it's ok to be sad. However, I do not want the hospital experience to be scary or anything so I am upbeat about it all - it is quite tiring though!

To finish - photos and videos from the evening: a lovely video of J taking the cat for a ride in the evening after the treatment and one of us enjoying tickling (he loves being tickled by my feet - he seems to find it even funnier than with hands! Just listen to him chuckling :-) ).

((By the way, he had slight redness under his chin and at the back of his head - the cast really is much higher than the previous 2 - it didn't seem to bother him too much though.))

Letting go

A friend said I should blog times when I'm not happy as well as those when I am. So here goes.

J has completely weaned. And I'm finding it hard. La Leche League (who support breastfeeding and produce wonderful leaflets on breastfeeding topics among other things) have been brilliant and very understanding. It all happened so suddenly and took me by surprise and I think part of how I feel is a result of the abruptness. I miss it so much. It's been part of my being a mother since the word go and now it's over.

One element of course is hormonal. When you breastfeed, loads of feel good hormones are released so you feel calm and relaxed. I don't know what's happening with my hormones now but I can cry at the slightest thing and "things" just feel harder than they did 2 weeks ago.

If people haven't breastfed, I think it's hard to really appreciate how it is to want to carry on but be forced to stop. I don't think J actually meant to stop, but because his mouth was sore he was put off it and I haven't been able to persuade him to for nearly 2 weeks.

If you google "stopping breastfeeding and depression", there are lots of hits. It's not a rare thing to experience.

To make matters worse, in my quest for help with dealing with this I keep finding more information about why extended breastfeeding is so good for mother and infant, for example breastfeeding exercises the baby's mouth/jaw so the baby is less likely to need a brace on their teeth in later life; much reduced risk of breast cancer for mum (down 8% if you feed for 2 years!); the iron in breastmilk is much more digestible than that in formula or cows milk, so it really helps with the "iron count".

People mention silver linings in the cloud (like getting new underwear) as if that's compensation. But all I really want is my baby to feed again. Letting go of what I want and accepting the reality of what's happened is hard.

Sorry - this has nothing to do with scoliosis, but it is very much colouring how I feel about things including the scoliosis and the MRI scan.

I have news on J and the scoliosis, but will post tomorrow (tomorrow is when J gets his 3rd cast too). Hopefully things will seem better then...   

How to get up when you can't bend

Whereas J initally got stuck in an upside down V shape and needed rescuing, he has now perfected his technique despite not being able to bend because of the cast:

My spotty little man

I haven't had it verified by a doctor, but it would seem that J has had Hand, Foot and Mouth disease (HFM) for the past week. All the symptoms match what the NHS website says (non-itchy rash, followed by blisters on feet and hands, unwell at first and off his food, ulcers in his mouth). The worst part for me was the sudden stop in breastfeeding. I do NOT recommend going cold turkey on that front to anyone! When infants want to stop they normally taper off - for good reason. He hasn't fed now since last Wednesday evening (when he fed at 6pm or so, but refused at bedtime).

I really want to carry on breastfeeding and am expressing to try and weather the current storm until his mouth feels ok (he keeps on trying to feed, but pulls away each time because (I think) it hurts with the ulcers). I have been shocked by how many people seem to think there's no "point" at this age and it's time to stop. Just to name a few of the reasons why I want to continue:

• it's lovely for both of us (a good time of closeness and connection - great at the end of the day when I've been at work away from him for so long)
• breastmilk has more "good things" for immunity during the second year of feeding (nature seems to know toddlers will come into contact with a wider world at this age)
• it's very useful for hospital appointments (eg just before the forthcoming MRI scan when you are allowed to breastfeed up to 1 hour before even though food is not allowed)
• it's convenient!
• it was a good part of our evening routine (we've already lost bathtime because of the cast and now the feeding is out too...)   

An example of J's spots (also to a lesser extent on legs and arms) - bit blurry, sorry!

 Can you see the blister on the middle toe? At one point there were lots on the toes, sole, fingers...

Fortunately, apart from the initial feeling of being unwell (when I didn't know he was ill, it just looked like he had a heat rash), he's been fine.

how a brace is made

Just seen a link on You Tube of a child being moulded for a brace. The making of it looks like a very similar process to what J is having every two weeks for his cast.