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Father's Plagio Diary

 

Father's Plagio Diary

 

Father's Plagio Diary

Child: Toby
Diagnosis: Right sided Plagiocephaly with Brachycephaly
Date of birth: 20/03/2007
Date entered into treatment: 27/07/2007
Mum: Joanne
Dad: Kevin

 

Why we chose for Toby to undergo cranial remoulding

Toby's sisters lovingly refer to him as 'pea head' because he has a perfectly round little head - or at least he did have.

When he was about 6 weeks old, Jo noticed that his head appeared slightly flatter on the right hand side.

Nobody else seemed to notice, she thought that she was being paranoid. By 8 weeks I agreed with her that it was indeed getting flatter. Jo asked the health visitor for advice, she suggested repositioning and assured Jo that "flat head syndrome" was common these days as parents were advised to put their babies on their backs to sleep.

She was reassured that as he got older and enjoyed "tummy time" and began sitting up that it would sort itself out, and to be honest I thought it would too.

It became an obsession with not putting him down. We slept him on his tummy for his daytime sleeps and rolled a towel behind him when he went to bed at night so he slept on his side.

By 10 weeks we noticed Toby seemed to be holding his head to one side. The GP suspected that there was a tightening of the neck muscles on one side and referred him to the hospital, the earliest appointment being the 20th August!!!! Jo mentioned to him that repositioning did not seem to be working, again she was reassured that it would rectify itself by 7 months.

It made me feel that we were just being pushed aside, I felt furious for treating this like an insignificant problem. Feeling totally despondent and exhausted due to our obsession with avoiding putting Toby down on his "flat" side, in tears Jo went on the internet and typed in "flat head syndrome".

She came across LOC's website. For the first time we read about "Plagiocephaly" and "Torticollis" - a tight or shortened muscle in one side of the neck - probably the cause of Toby laying predominantly on the same part of his head. Jo called them the following day and spoke to Mr Hamid.

At last, someone who seemed sympathetic to our feelings.

A free consultation was suggested, what had we got to lose??

So we made an appointment.

6th July - The Consultation

6th July - The Consultation

We arrived at the clinic and saw a little boy in a LOCband, he looked so cute. He was nearly a year old and had been wearing the band for a month. His mum had followed the GP's instructions and waited for his head to miraculously fill out, this just confirmed our feelings about the dismissive health service. When it became apparent this was not going to happen, she turned to LOC after being recommended by a friend. She had noticed results after 2 weeks!!!

We met Catherine Williams at our appointment. She confirmed that Toby had Plagiocephaly and mild Brachycephaly. Watching her  measure his head confirmed how out of symmetry it actually was. Catherine showed us a LOCband and to our relief it was so much lighter than we thought it would be (both riding motorbikes we know how heavy helmets can be). Catherine is also a qualified physiotherapist and showed us some exercises to do with Toby to help stretch his neck muscle. We were advised at the end of our consultation to go away and have a think about things.

We called from the car having only got as far as Kingston Bridge!!! We felt so optimistic. We feel sure that LOC could help us get our "pea head" back.

 

13th July - Scan day

13th July - Scan day

What a relaxed environment and a totally stress free experience. Toby sat on my knee and Jo sat opposite distracting him with an assortment of toys as a stockinette was placed on his head to create a smooth scanning surface for the hand held laser. It created a 3D image on a screen (I work in engineering and was
fascinated by this whole process, I could spend all day watching it). Within minutes it was complete, and we selected a design for Toby's LOCband - that being the hardest part of the day because of the vast choice (my only disappointment, none with motorbikes on!!).

Back in two weeks for the fitting.

 

27th July - Fitting Day

27th July - Fitting Day

It finally came around, I was excited about the fitting, whilst Jo was starting to get nervous about it. We couldn't wait to see how Toby looked in his LOCband and finally start getting our "pea head" back. Catherine was as helpful as ever. She showed us Toby's  LOCband and explained how the fitting would go. I was worried about how Toby would take to having the band on, whether he would be settled or overly upset. At first he wasn't happy, but after Catherine did a little trimming and fettling he was much happier to our relief. As for the care and routine to let Toby and his body get used to the band, and prevent any health issues, it's pleasantly simple, yet another relief that it won't be a "chore". We felt so happy to be on our way.

 

28th July - Our First Day

28th July - Our First Day

I knew the first day was going to feel a little repetitive with the band going on and off alternate hours. In reality it was much easier than we thought. Straight into everyday life came the band, a quick trip to the library and the shops. I felt conscious of the band to start with, and I missed the fuzzy little head beneath my chin when he was in the baby carrier.

Within a few times of Toby having the band on it soon became strange to see him without it, like he'd always been wearing it. Jo and I are both aware of a lot of adults trying to catch a peek, and their embarrassment of their own children shouting out "look at the baby in the helmet". I almost wish more people would ask, so they might learn that this treatment is out here, they might know someone in the same situation.

 

30th July - Monday Family Day Out

30th July - Monday Family Day Out

Been down to Woburn Safari park today, Toby's been wearing the band 4hrs on 1hr off. The band doesn't bother either of us at all, we know that we're doing this for Toby. I can still feel people trying to catch a glimpse (or a very noticeable stare) even from a  distance, and children are definitely inquisitive about it. Jo over heard a young boy saying to his dad "look at the baby", his dad just replied "its like the one you used to wear". It makes us feel like we're part of something, as opposed to being on our own.

The First Week

Things are hectic with school holidays, fortunately Toby's band hasn't been an issue. We still have moments with it, when putting the band on where our beloved Toby has decided at the last moment to look somewhere else, which after however many attempts becomes very annoying. As the saying goes "never work with children or animals"!!

I've been frustrated and Jo has been very upset about it, ultimately we keep thinking that this is going to be worth it. Practice makes perfect!! We're lucky that the band isn't leaving any marks on his head at all, even after being in it for a good 12 hours, usually Toby's skin shows up even the smallest of things, but not a thing.

 

3rd August - Friday

3rd August - Friday

Once again the disappointment we feel after seeing the health visitor at the drop in clinic is unbelievable. It feels very evident that she disapproves of our decision to opt for the band, even though she uses the phrase 'MOST babies will lose the flat part when they start moving around'. Despite the fact that she knows how much effort went into repositioning with no result. It seems the health visitor knows best no matter what she is told.

But every cloud has a silver lining. We feel so happy tonight, my parents have come around to baby sit for us. They turned up just after we got Toby out of the bath, so his band was off. First thing my dad did on walking through the door was to have a good look over Toby's head, and say it's getting better!! We were shocked, he pointed out exactly where he was looking and sure enough it's 'going round'!! It's such a relief to be able to see that its working, all the worries don't matter now, it's working.

 

4th August - Out and About

4th August - Out and About

Saw a work acquaintance this morning whilst out shopping, first time he's seen Toby. We could tell he was looking at the band wondering what it was, so Jo just told him outright why he was wearing it. Once the curiosity was gone, he went off wiser.

Took the children out on their bikes to a friend of theirs. They'd already seen Toby in his band, but they'd got other friends who hadn't. It was quite interesting as they just assumed that Toby's band was a cycle helmet, at least until the conversation got round to his 'flat head' and how things were going with the band. Then came the 'I wondered why it had a funny shape hole in the top of it'. Amongst friends it doesn't matter about the band, all the women think he's just as cute if not cuter than before, and the boys joke about it being his first crash helmet!!

 

7th August - First Review

7th August - First Review

We had our first review today after what has been a hassle free week with the band. When we got there Catherine was about to see another child who was there for his final scan, we sat talking to his mother for a couple of minutes before her appointment. She went in and shortly after another lady turned up with her son, and  sure enough both of these parents been given the same advice by the health visitor, it feels like we're all here due to the same lack of interest from the health service.

The other thing they shared in common was how pleased they were with the results from the band, it makes us so confident we're doing the right thing for Toby. When Catherine saw us, she took the band off and could instantly see how Toby's head shape was improving. She performed the same measurements that she had done on the initial consultation, this just confirmed how his head shape is changing. Until you're given those measurements you still aren't quite sure whether you're imagining the change or if it is real. The band is doing exactly what we had been told it would. We are so excited!!!

 

Swimming

Swimming

We took Toby and his sisters swimming tonight. It has finally happened, we went into the cafe on the way out so we could feed Toby before heading home. I stood him on the counter top so he could see everything (he's far too nosey), the lady looked at him and said "how cute are you" looking straight at Toby, then looked to us and said "What it's for?". We explained to her and she said that she knew he was wearing it for something and she was curious as to what. Such a welcome relief that someone actually asked instead of talking to us about him and waiting to be told about the band.

 

An Unexpected Visit

An Unexpected Visit

We decided that we would have to see if we could get an in between appointment for Toby as his Band was getting a little tight over his brow, which made him look like he was concentrating all the time. Jo called in the morning and they were able to give her an appointment that afternoon, unfortunately I couldn't go due to  work. I waited for her to call when she came out, it seemed like she was in there forever. When she eventually called, she told me that Catherine had said it was fine and would be getting a bit tighter now as Toby was filling out the band better. Catherine was also very impressed with how Toby's head had improved in such a short time (just two and a half weeks). We still have to go for our official check up in another ten days so that all the measurements can be retaken to see how much better his head is.

 

The TV engineer

The TV engineer

Had a few problems with the TV, so got an engineer out to fix the problem. He saw Toby in Jo's arms and asked what the band was for. We explained to him, and he told us a story of a child he went to school with who had a 'flat head'. He went on to say that they used to call this child 'flat head'. Jo and I had discussed the
possibility of this happening to Toby if we did nothing and it didn't get any better, his story just made us feel that we are even more so doing the right thing!!!

 

7th September - Third Review

7th September - Third Review

We've been talking a lot over the last week about this review, we are so happy with Toby's head shape. It's strange to think back on how bad it actually was when we started out, we still look at the 3D scan picture occasionally. Toby's head is just gorgeous now, such a lovely round little 'pea head', which is what we've wanted back all along. We've been talking about the possiblity of this being the beginning of the end with regards to the LOCband. I've become so used to the band (I almost look like a professional when it comes to putting it onto a moving head!!!) In some ways it will be a sad day when it goes, although on the other hand it will be so nice to see that lovely head all the time.

Every time Jo visits the clinic we both feel very happy when she comes back, Catherine is still very pleased with how Toby's head has come along. We were especially pleased when she said we could stop Toby wearing the band if we wanted to, as his head is  now well within a normal range of symmetry. However Catherine suggested that she can improve Toby's head shape even further. Jo decided that we'd go with Catherine’s opinion and keeping going a little longer. I'm pleased that she did, as his head will be even more perfect.

Consultation
Circumference:410mm, CR:95%, Asymmetry:9mm
1st Review
Circumference:420mm, CR:92%, Asymmetry:4mm
2nd Review
Circumference:430mm, CR:90%, Asymmetry:3mm
3rd Review
Circumference:430mm, CR:89%, Asymmetry:3mm

Catherine also did some follow up checks on Toby's neck muscles and she was pleased to see he has the full range of movement that he should have.

 

Out and About

Out and About

Jo went out toy shopping a couple of days ago, and as she stood at the till waiting to be served she was approached by a grandmother. She looked at Toby, and asked Jo “Is that helmet to correct his head shape?”

Jo explained that it was, and the woman continued to say that her grand child who was with her had a flat head, and proceeded to point it out to Jo. He was probably around 5yrs old, they had been told by their GP that it would sort itself out. Unfortunately for them  by the time they had realised it wasn't it was too late to do anything about it. When Jo told me about it that evening, we talked about how we felt about the treatment. There is no regret at all. We definitely know that we would not have been happy if we had just left it to chance that it would sort itself out, this was the right thing for us to do. Both of us knew that we would be very upset if we had done nothing and it hadn't got any better.

 

Mum's Friend

Mum's Friend

My mum's friend became a grandparent not long after my mum did. As the babies have been growing up they've been talking about their respective grandchildren. Toby's head and the LOCband came up, as her friends’ grandson has also got a flat head.

She had asked mum a lot of questions about it and mum passed on a leaflet to her to give it to her daughter. Her daughter went to see her GP who has in turn given her the usual advice of when he starts moving around it will sort itself out. However he did also say to her that if she was going to persue this course of action that now was the best time to do it whilst he is still young as the results are seen quicker.

 

4th October 2007 – The Final Review

4th October 2007 – The Final Review

Today has been fantastic. Since the last review we have been battling each other to get to Toby's head first every time we take the band off (now we don't have to!!!) and have been showing it off to people. Catherine took off Toby's band, and took the final set of measurements from his round little pea head.

I have to admit that I'm a little lost for words on what to say. It is perfect, it is so symmetrical, and so round at the back now where once it was flat. The proof is in the pudding as they say, his head is so gorgeous, and now we've had a look back at some of the first photos his hair has grown so much whilst he's been in the band (even more irresistible to rub your cheeks over).

This whole experience has been so worthwhile, I’m going to miss my little game of place the band on the moving head.

So this is goodbye and we must just say..

A Big THANK YOU from us all.

 

29th January 2008 – The Final Update

29th January 2008 – The Final Update

A Message from Toby:

Time and man never stand still or so they say and as I move on and explore places where no man(baby) has gone before, all that is left to say is…What Helmet?

 BeforeAfter
Date of scan: 13/07/2007 04/10/2007
Age: 4.5 months 6.5 months
Head circumference: 410mm 434mm
Cephalic Ratio: 95% 88%
Asymmetry: 9mm 1mm