Pre op assessment day

So we have had Wormy’s pre op day – we even have an initial date for surgery! It all seems quite real now.

The day itself went quite well. We arrived at GOSH and almost immediately went in to see the Physiotherapist and Occupational Therapist. They are pleased with Wormy’s flexibility and don’t think she will need either physio, or extra help in our day to day set up. We mustn’t lift her under her arms and trampolines, play grounds and swimming have been banned for 6 months post op, unless our consultant tells us otherwise.

Next was a visit with the Pediatrician followed by medical photography, where they take the ‘before’ photos. Blood tests, oxygen levels, blood pressure and swabs came next and luckily the Anaesthetist was passing, so we did our appointment with him while we were there, rather than later in the day.

The Anaesthetist told us about the risks of surgery. Apparently the risk of something major going wrong in surgery is only 1% but if we were to choose not to do the surgery there is a 100% chance of major life threatening deformity – so surgery is a ‘no brainer’ really!

Lunch followed next and some lovely volunteers at GOSH were handing out free toys to patients so we chose a lion!

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After lunch we had a tour of the hospital ward where Wormy will go after the op and then we were off to ECG and Echocardiogram. All in all we finished an hour ahead of schedule and a good 2 hours before we were told not to expect to leave before!  Good job too as Wormy had had enough by this point. She had been brilliant all day but she then proceeded to have a tantrum through 2 tube journeys and half of our main line train journey home. It is fair to say when we got home we were exhausted!

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The power of social media!

Whenever I thought about my life, prior to becoming a mother, I would never have thought of myself as any sort of campaigner. I was (still am in fact) a rather ‘arty farty’ musician with my head in the clouds most of the time. Social media was exactly that – social! I would snoop on my friends, arrange nights out and post pictures of my cats.

My world fell apart when Wormy was diagnosed with Congenital Scoliosis.  We did not know where to turn, that is why, in part, I started this blog, so others in our situation could see they were not alone. The last place I thought to look for help was Facebook! We searched the Internet and found SAUK and in particular I found a blog: Infantile Scoliosis – J’s Diary, which brought Facebook groups to my attention.

I am now a member of multiple groups about Scoliosis, and I can thoroughly recommend anyone reading this, who is in a similar situation, to search Facebook for a group to join.  I will add a list of some of my favourites at the end of this post.

However, not all groups are to my taste.  You do have to shop around for the best fit.  Some of the groups are quite militant, and I, frankly, find them quite scary.  Others are mini dictator states, woe betide you if you express an opinion that differs from the founder of the group, or you will be shot down, in irrational argument, pretty quickly.  There are groups which favour certain treatment options, groups that try to sell you (rather dubious in my opinion) miracle medications, groups that are at war with other groups (don’t you dare try to be a member of both without being labelled a spy!), and groups which are predominantly made up of members from a different country.

In my experience most groups are heavily populated by Americans. Nothing wrong with this, but when you are trying to find products recommended to you, there can be some difficulties.  What is this product called in UK? Is it available in UK? Is it licensed for use by children in UK? Etc – it can be a minefield!
I started searching, in the groups I had joined, for other people in UK.  Actually the first person I ‘met’ I pretty much accused of fraud, but that’s another story. By February 2015 I had made friends with 4 other ladies and we were spending most of our time chatting on Facebook about our childrens’ conditions.  As we were filling up our timelines, I casually mentioned ‘why don’t I set up a group where the 5 of us could chat privately?’  I called the group a Scoliosis Friends and it was only ever meant to be the 5 of us.

A year later and we have 68 members, a Facebook group, a Facebook page and a Twitter account and we are hell bent on world domination – or something like that!  I’ll bore you with the details of what we get up to another time!

The point is: there are places you can turn! There is always someone who has been there, done that, got the t-shirt! Someone who can attempt to explain the weird technical term your consultant used, but you were too shy to ask what it actually meant.  Someone who can talk you down from the ceiling when you have had a bad day.  Someone to commiserate with you when you are feeling sad. And dare I say it? Someone whose situation is worse than yours!

I’m sorry I sometimes seem buried in my phone -but social media has kept me sane.  I’m not sure what state I would be in right now if it wasn’t there.  I certainly wouldn’t know half as much as I do about Scoliosis!

List of Facebook Groups (in no particular order!)

Early Onset Scoliosis & Mehta Casting

Congenital Scoliosis Support

Scoliosis Inspire and Inform

Scoliosis Ireland

Scoliosis UK

Scoliosis- LOVE MY BACK!

Links to Scoliosis Friends

Scoliosis Friends – Facebook

@ScoliosisFriend – Twitter

 

 

 

Update!

It has been quite a while since I last posted on here.  It has been probably the most stressful year of my life, but also one of the most rewarding!

Wormy has had a 3rd cast applied and removed.  Our family has expanded – Little I was born in May, 6 weeks early but is now doing fine! In August we had another appointment with our consultant and Wormy is now in a brace!

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At the appointment we finally found out a bit more about Wormy’s condition.  She has 2 hemivertebrae on the same side, located between L2-3 and T11-12. She also has a cleft vertebra higher up in her back but this is nothing to worry about. We still don’t know degree of curve as we have never had a standing x-ray but that it is quite severe. Her pelvis is tilted and ribs pulled out of alignment but there are no deformities in either of these areas so they are just a result of the curve. There is also a small compensatory curve at the base of her spine.

Following a further appointment with the consultant in January we are now on the waiting list for surgery as her curve has reached 85 degrees.  She will have both hemivertebrae removed and then the vertebrae on either side will be pinned together.  She will be in a brace for about 6 months following the operation.  We don’t yet know the date of the operation but we have pre-op on the 7th April, so should be quite soon!

Second Cast

Wormy finally had her cast taken off on Monday 9th March after 15 weeks.  We had to travel into London to Great Ormond Street, as our local hospital wouldn’t have anything to do with it, even though GOSH assured us that patients usually have their casts taken off locally, and did a referral for us!

I was so excited to see all of my daughter once again and to finally get her in the bath after such a long time!  Wormy didn’t like the saw but couldn’t stop touching her tummy once the cast was off – it was so cute to see.  It is fair to say that Wormy enjoyed being out of the cast.  She knew she was allowed in the bath and couldn’t wait to get in it, we even had tears that the water wasn’t running quick enough, so we put her in it with only about 1cm of water and let it fill up around her – not something I would usually allow in case it got too hot, but we didn’t want to waste any precious seconds of being able to do something we would not usually be allowed to do.

We managed to take a picture of her back this time so that we have something to compare to in the future.

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Wormy had so much energy over the next couple of days, you could see how much the cast usually weighted her down, and she seemed to avoid the aches, pains and wobbliness we had been warned about, coming out of the cast.   We had baths every night and they were throughly enjoyed, the tummy was rubbed a lot and lots of raspberries blown on it, and Wormy rediscovered jumping.  I tried to take her swimming, but unfortunately our local pool was having a swimming gala, which they didn’t mention on their website, and as we had to wait until 3pm for school swimming to stop in the first place, it was by then too late to take her anywhere else.  I feel a letter of complaint coming on.

On Thursday 12th March it was time to go back to Great Ormond Street.  We had to check in by 7am, which meant an awfully early start.  Wormy was bundled into the car still in her pyjamas and she didn’t have time to notice we hadn’t given her any breakfast.  All was going smoothly, we had seen the Dr, the Anesthetist, and had observations taken by 9.30, and were told she would go down to theatre by 10.30.  ‘Brilliant’ we thought!  Then came the message “she can drink clear fluids until 11am”, oh no that would mean we wouldn’t go down until at least 1pm,  a bit later the message came “she can drink fluids until 12pm”.  In the end it was 3.30pm before she was taken down to theatre.  She had fasted from 6pm the night before and in spite of being allowed fluids and offered them, she had refused to drink anything since 7am!  She was so well behaved though.  No fuss at all, no asking for food or drink, just very happy to play in the play area, particularly enjoying the Little Tikes Mickey Mouse car.

Waking up, it was heart breaking to watch her discover she was back in the cast once more.  This cast is much, much tighter than the previous one.  Apparently they have managed to get a better correction in traction, so they are trying to keep that in place.  It does mean nappies and also eating are much harder to do.  There is not much room to tuck the nappy up under her cast, as we were doing, and she can only eat little meals and then suffers from gas, so that we have to get her out of the high chair quickly after eating so she can run around and work it off quickly.  Wormy has adjusted brilliantly as usual and is back to her cheeky, climbing, running self.  It will definitely take Mummy and Daddy longer to adjust!

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Wormy’s Cast

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On Tuesday 25th November we reported to Great Ormond Street Hospital for Wormy’s first cast fitting.  The hospital is fantastic.  They have a huge play area on the day ward, a play specialist (although he wasn’t there on this particular visit) and even the smallest detail has been made child friendly down to the lead vests in the X-ray room and colour changing lights in the ceiling of the lifts to keep children on trolleys entertained.

To say the day was difficult is an understatement, but Wormy coped beautifully.  We were kept waiting longer than anticipated as a previous surgery ran over time.  I was really worried about her coping with nil by mouth has she hadn’t eaten anything since dinner the night before and nothing to drink from 7am.  She barely noticed we didn’t give her breakfast.  We simply got up, got her dressed and bundled her straight into the car.

She didn’t go down to theatre until gone 3pm.  We were starving by this point so I have no idea how she managed to hold it together, and we had taken turns to sneak out for a snack!  They let me hold her while she was given gas to make her sleep and then as soon as she was down we got taken out of the room so they could administer the anaesthetic.

The procedure itself required her to be put in traction on a specialised table and when they think they had managed to get the best correction they can, they wrapped her in plaster to keep her in place.  A small hole for the stomach was then cut out and, in Wormy’s case, shoulder straps applied.

She was in theatre about 90 mins – I can’t quite remember how the time passed as it was a bit of a blur.  This time she came round nicely, not the screaming and turning red we had after the general anaesthetic for her MRI.  Still very sleepy we got sent up to the ward where Wormy and I would be staying over night.  She had her stats observed all night and pain medicine delivered at various intervals.  She slept well, but I did not!

In the morning a very clingy Wormy would not let me put her down at all.  I was very relieved when Daddy was arrived so that I could get a cup of tea and go to the toilet!

We have had to adjust the way we care for her at home.  She went from a clothes size 12-18 months up to 2-3 years over night!  We were worried if her stroller, car seat and high chair would all still fit her, yes they did as a matter of fact, but only just.  Sleeping arrangements took a while to figure out.  Too big for her gro bag, we tried a pillow and duvet.  The pillow, is still a bit it and miss but the duvet got firmly rejected so a new set of 1 tog gro bags were swiftly ordered.  In order to keep the cast clean we make sure she has a long-sleeved bib on to eat, and if she is having something like oranges, a cloth bib underneath as well.

Keeping her healthy has also been a challenge.  Our local GP agreed to give her the flu jab so we could at least rule out 1 thing for her, but only after a couple of weeks in the cast we started the first chest infection.  Wormy is unable to fully inflate her lungs, meaning that she is unable to cough effectively.  This has caused several infections this winter.  We are unable to give her any baths so we have started a new bedtime routine of sponge washing all accessible bits of her and do a weekly hair wash which involves two cloth bibs, a long-sleeved bib, being swaddled in a huge muslin, held by Daddy over the sink while Mummy washes her hair as quick as possible!

We must be very careful about not letting her get too hot.  Thankfully this winter has been quite cold so we haven’t had to worry too much so far, but it will be a different story as we go into summer.  We are really lucky to have a fantastically supportive child minder who has taken all this in her stride so at least we don’t have something else to worry about.

Wormy has adjusted to life in the cast really well.  She is walking better and climbing.  She can pick things off the floor and can now stand up without crawling to a wall to pull herself up.  Having the cast taken off could be a bit problematic for her, but I, for one, am looking to putting her in the bath and enjoying some squishy cuddles!

The MRI results: part 2 ARGHHHHHH!

This post was originally written in October 2014.  However, for various emotional reasons I didn’t feel up to posting it until now!

What can I say about how we felt about learning that Wormy is going to be put in a cast?

First reaction: Shock!  As we were told at the previous appointment that a cast or brace would have no effect on a Congenital Scoliosis, feeling we had dodged that bullet until after the surgery at least, shock definitely describes our reaction, quickly followed by utter heartbreak!  This was absolutely the one thing I have not wanted to happen!  I know it will all be in her best interests but I do not understand how she will have any quality of life whilst incarcerated in this cast – like the man in the iron mask!

I think between me and my DH we have been through every possible emotion available; anger, sorrow, joy that the major spinal surgery has been delayed, denial and heap loads of depression! I feel I have spent the last few weeks in a daze!  Most days I have cried at least once, I am so stressed I am struggling to process the most basic of information, and yet life goes on.

After processing this news for almost a month I am still feeling completely overwhelmed – but I feel determined that I will not let this overcome me.  I am currently researching ways to keep Wormy clean, how to wash her hair, what can and can’t she do, etc.  I have been fortunate to come across the blogs of some other Mums with children in casts.

Infantile Scoliosis – J’s Diary http://infantilescoliosis-diary.blogspot.co.uk/2014/10/how-to-contact-cast.html was the first blog I came across.  This blog lead me to the Early Onset Scoliosis & Mehta Casting, and Congenital Scoliosis Support! support groups on facebook, and in return has lead me to Nora’s Journey with Early Onset Congential Scoliosis http://norasjourney-early-onset-congenital-scoliosis.com/.  This last blog has a wonderful blog on everything you need for a child in a cast, on casting day and at home.  There are loads of things I have had to look up as this Mum is in America and so brand names are unknown to me, and there are references to items I do know but am unsure if they are the same thing in America.

The MRI Results: part 1- the facts

When we first had the diagnosis of Scoliosis confirmed we both did what everyone does, and are advised not to do for good reason, we started searching on google.  Luckily I was sensible enough to limit myself to the NHS and SAUK websites for information but I can’t say that what I read was much comfort.  Treatments for Scoliosis include bracing (I was expecting this), surgery (I was also expecting this) and casting.  I didn’t know much about casting so doing a bit more research, I discovered that in really small children a plaster of paris cast is often applied to hold the spine in a better position.  In Early Onset Scoliosis, it can in some cases straighten the spine so that surgery can be avoided.  However it looked like a method of medieval torture and wouldn’t be able to be taken off for up to 3 or 4 months at a time, when it would be replaced immediately with a fresh cast, each new cast being applied under general anaesthetic.  Since reading this I have been in absolute fear of Wormy being put in a cast and I knew this was absolutely the one thing I did not want to happen, however in the weeks leading up to our first appointment at Great Ormond Street Hospital my husband and I had to face the reality that she would have years of casts and braces ahead of her before ultimately having to undergo surgery, probably in her teenage years.

We were SO relieved at our first consultants appointment, when we asked about braces and casts, to be told that with Congenital Scoliosis, braces and casts have limited effectiveness and ultimately the only cure would be surgery to remove the hemivertebrae.  It was very scary knowing that Wormy would have to have major spinal surgery under general anaesthetic before the age of 2, but the thought it could all be over this year (save possible “tinkering” when she is about 16) was so amazing we knew we could get though anything to get her straightened out.

This did not stop us being extremely nervous leading up to our next trip to Great Ormond Street Hospital.  We were going to get Wormy’s MRI results and have confirmed what course of treatment she would be receiving.  At our previous appointment the consultant had told us that in all likelihood she would be put straight on the waiting list for surgery and would have the operation once she was 18 months old.  As we were a bit later getting the consultants appointment than we expected we were therefore expecting the surgery to be at some point before Christmas, not the best timing but if it would ‘cure’ her and let us draw a line under the whole thing and let her get on with living a ‘normal’ life, we would happily sacrifice Christmas for one year!

The MRI results were good, Wormy’s spinal cord was in perfect condition and the consultant was really pleased with her development.  Wormy happily toddled in to the room and cruised around the furniture, pulling her self up at the table full of toys and was quite happy to be undressed down to her nappy so that she could be examined but was rather put out to be immediately dressed again and spent most of the rest of the appointment holding my husband’s hand and trying to drag him out of the consultation room.  It made the rest of the appointment fairly hard to follow as she was squawking and toddling around dragging Daddy with her in and out of the room, but we were amazed when the consultant suddenly starting talking about casts.  The fear is, he explained, that now she is walking she will develop a sympathetic curve, causing her spine to become S-shaped.  The cast would be put on under general anaesthetic and while she is in traction.  We had to back track slightly and ask about surgery but he explained that as she is still quite small she is simply not big enough for surgery. Bigger bones will result in a straighter result, so in the mean time, until she is big enough, she will be put in a cast and then at some point next year have a brace fitted.  When she will be big enough for surgery we don’t know.

So, we are facing several months in a casts, then at some point a brace which can be removed for 1 hour a day, and once she has grown ‘enough’ she will have major spinal surgery.  Not the best news and certainly tough times ahead!

Our journey so far…..

Ok…

I am hoping here to create a record of my daughter’s journey through Congenital Scoliosis, so I had better let you know what has happened so far.

Wormy was born in 2013, she was a bit early, as I developed pre-eclampsia, and was born rather small.  As a result we were kept in the hospital for about a week until they were happy she was putting on weight.  When she was about 5 days old I finally got to see her naked, apart from when she was first born, and I remember thinking her tummy was a bit bulgy on one side.  I didn’t worry about it as the hospital staff kept checking her out and prodding and poking her.  I thought if I could see it then so could they. 

After we left the hospital my husband and I would occasionally ask each other if we needed to be worried that her tummy was a bit bulgy, but we kept explaining it away that she was sitting funny, or all scrunched up and besides the hospital were keeping close tabs on her weight gain, checking her out fairly frequently and no one seemed concerned about her so neither should we be.

At about 8 months old Wormy finally started sitting up by herself.  We thought it was a bit on the late side but as she was so small she wasn’t very strong.  But it was while she was sitting up that we really began to realise something was wrong, she was constantly leaning over to one side and slouching, not something we had seen in other small children. When my husband next asked me if we needed to worry about her tummy I replied “yes but have you seen her back?”  We decided we needed to go to the GP.

The GP we saw wasn’t one that we have met before – or since.  We went in and explained that we thought our daughter’s spine was crooked and upon examining her the doctor told us that she thought her spine was fine and that the bulge we could see was a growth.  Well you can imagine what that word did to us! Growth – you immediately start thinking all sorts of things from cancer to elephantiasis.  She referred us for an ultra sound at our local hospital but asked if she could keep an eye on her diagnosis as she had never seen anything like it before.  She was rather excited, which grated somewhat as we were feeling very emotional about the whole thing.  This was probably one of the worst moments so far.

Luckily the ultrasound was all fine.  The Dr checked all her vital organs and the bulge and told us that as far as he was concerned it was a rib deformity and we needed an X-ray.  We had to go back to the GP (thankfully a different one to the first lady we had seen) to be referred for the X-ray and we really had to press for this.  The GP wanted to wait for the ultra sound results before referring us, but we were insistent we be sent straight away. The X-ray was quick and painless, save Wormy wriggling and pooing on the the X-ray table!

Another trip to the GP to get the results gave us the diagnosis we were expecting thanks to Dr Google – she had Scoliosis, to be honest this was a bit of a relief considering some of the diagnoses it could have been.  The GP read out a whole catalogue of things they found in the X-ray: fused vertebrae, too many vertebrae, hemi-vertebrae, split vertebrae – I forget the terms she used there were so many.  The GP didn’t know what to do next and the surgery hadn’t had a patient diagnosed with scoliosis before.  She assured us she would look into it and we went on our way.

Our first stop was to go SAUK – The Scoliosis Association UK, who advised us to get referred to either Addenbrookes in Cambridge or Great Ormond Street Hospital.  We went back to our GP and stated we wanted to be referred to Great Ormond Street as they would be set up to deal with little children and parents even though Addenbrookes is probably closer to us.

Our first appointment came through in May and the consultant told us she had a “considerable Scoliosis”.  The X-ray was not clear enough to confirm the diagnosis but he believed she had Congenital Scoliosis which would have developed within the first 6 weeks of pregnancy.  He believed she had a hemi-vertebrae, a wedge shaped extra vertebrae, which was pushing her spine out of line and causing the curve.  He needed an MRI scan to confirm this and check out her spinal cord and then he was proposing to operate to remove the hemi-vertebrae and then fuse the surrounding vertebrae with metal work.  He said she would be too small but by the time she had the MRI and follow up appointment the waiting list would take her to about 18 months, by when she should be big enough for the op.

We had the MRI under general anaesthetic in July.  She was very well behaved while being starved before hand – the play room and play therapist on the Puffin ward at Great Ormond Street were fantastic!  Kept her entertained until it was her time to go down.  Wormy didn’t react well to waking up from the anaesthetic.  She had a really sore throat and the anaesthetist had inadvertently put the heart monitor on her left thumb – the one she loves to suck.  We got called down to go and get her she was screaming so hard!  We found her red faced and yelling so hard it took over half an hour to get her to calm down enough to have a drink of water.  Eventually we were allowed home to wait for the next consultants appointment.

While all this is going on Wormy has been slowly developing.  After mastering sitting up at about 8 months she seemed to want to learn to crawl at about 9 months, but then seemed to give up – this was just as we were seeing the GP for her diagnosis.  Of course this really worried us and we were told it was possible she would never learn to crawl or walk.  Happily she had managed to Zombie crawl by her 1st birthday – dragging one leg behind her, and then to crawl properly at about 14 months.  She started walking holding on with both hands at 15 months and at 16 months discovered she could pull her self up on the furniture and walk holding only one hand whilst we were on holiday in Kent.  Wormy can now take some steps by herself at 17 months and is very pleased with herself.