Isabelle's Plagiocephaly Page

23rd May 2006

Izzy appears in Woman magazine! click the pictures below for the story and cover.

(you may have to zoom in to read)

16th April 2006

Comparison photos received from Cranial Tech.

11th April 2006

"Baby Battle Goes To Downing St"

Izzy appears in the local Sandhurst & Crowthorne Mail. click the picture below for the story.

(you may have to zoom in to read)

25th March 2006

GRADUATION DAY !

The day we'd been waiting for with excitement, and a certain amount of trepidation, finally arrived. Izzy was in a great mood when we arrived at the clinic and consequently was a lot better with the medical photos than last time. We were very proud of her. She was undressed down to her nappy, had her hair all slicked down with shampoo, and was made to sit through 6 different poses in the dark with two enormous flashbulbs going off in her face but remained surprisingly calm and curious throughout.

The casting was a different story though. As you can see from the second picture below it was really harrowing for her...and for us. She screamed and fought it all the way but calmed down very quickly as soon as the cast was removed much to our relief. Within minutes she was happily playing with the ducks in the baby bath! This final cast has to be taken as it is the only infalllible method of knowing exactly how her head looked at the end of the treatment. There is always the possibility that any future growth will flatten out her head again so we need this cast as a record in case we are ever worried that she has regressed.

After the casting Izzy's final measurements were taken and we were told that her total growth has been 11mm (so the last measurements taken must have been wrong). The clinic said that Izzy hadn't achieved the amount of growth that they would have expected for her age, but Pete and I are still happy and have no regrets. If we hadn't gone through all this, the 11mm that she has gained since October would have all gone into making her head even wider and flatter. To us, Izzy's head looks so much better than it did when we started, and we have the comfort of knowing that we have done everything within our power to resolve her brachycephaly.

The pictures below show Izzy before, during and after the casting, her "head-on-a-stick" from the first casting, her graduation certificate and her beaten-up old helmet.

(Click each photo to see)

8th February 2006

Absolutely thrilled after today's visit to the clinic!

They measured Izzy's head for the first time since before Christmas and declared that the total growth in Izzy's skull since starting band therapy is 15mm. Izzy put on an entire pound in weight in January so her body must have taken full advantage. Together with her gorgeous curly hair you would never know that she had brachy or plagio anymore. We are so delighted!

21st December 2005

Feeling disheartened again. I took Izzy to the clinic today convinced that she had had a big growth spurt since our last visit but nothing had changed. They didn't want to measure Izzy's head again (as they did it on our last visit) but I insisted. Eventually I plucked up the courage to ask the clinician how Izzy was doing in their opinion and they confessed that, taking into account her age and the severity of her brachy,  they had expected to see a minimum of 3mm growth per month and a maximum of 4mm.

It has been two and a half months since Izzy got her band and we have only had 3.5mm growth.

23rd November 2005

Good news at Izzy's 7 week check-up today. Her brachy has improved from 100% to 96.5% and her plagio has improved from 4mm to 2mm although Charlotte, the clinician, said that the calipers are not hugely accurate and she could see by comparing Izzy's head to the cast that her plagio had improved more than that. I had been feeling a bit disheartened by the whole process earlier in the week so it was great to get a result. Charlotte said that Izzy's progress was "pretty good for an old girl"!

Izzy's article has been published in this weekends edition of the Camberley News (and sister papers). We're really pleased with the article and it should spread the word about plagio treatment around our area.

(Click below to see, then left-click on the article to read)

Jonathan and Alison accompanied Izzy and I to Cranial Technologies yesterday for her 3 week check-up. We got to see Izzy's head-on-a-stick (the cast that was taken of her head last month, mounted on a big stick!). It was quite creepy!

Interestingly, Pete and mum both thought they had noticed changes in Izzy's head shape recently but I hadn't. However, with the cast held next to her the difference was quite apparent. Where her head was previously flattish on one side it is now rounding out nicely, and there was also slight improvement in the middle and at the base of her skull.

It was all very encouraging and I shall be looking forward to sharing the news with the reporter who is coming to see Izzy tomorrow from the Camberley News group! Will post more details on that when the paper is published.

(Click each photo to see)

9th October 2005

We took Izzy back to Cranial Technologies in London on 5th and they fitted the DOCBand for the first time. She got a bit annoyed when she realised that she couldn't pull it off but soon resumed playing with toys and seemed to forget all about it. She even slept in it for an hour on the train journey home!

During the first 3 days we have to remove the band and check her scalp for red patches as she gets very sweaty and hot under there and, if left, the red patches can become infected.

She had quite a few red patches during the first day and consequently only had the band on for about 5 hours (plus the whole night) but yesterday was better and today better still. We hope that by tomorrow the redness will have disappeared entirely and she will be able to keep the band on for the full 23 hours.

(Click each photo to see)

When Izzy was around 3 months old, family members started to comment on the shape of her head, which was quite flat across the back. Luce mentioned it to the health visitors on a few occasions but was just told that it was perfectly normal and that it would round out given time.

By May the flatness was even more pronounced and her head was widening across the back too so Luce took her to the GP who said, "The only way to change the shape of a baby's head is to break it open and put it back together again". Very sensitive.

By June it was worse still so we took Izzy to a different GP who was even less sensitive. He kept saying that it was 'just cosmetic', and made us feel as though we were vain and neurotic parents. We made a stand and insisted that he refer us to a pediatrician which he did, grudgingly. Around this time we began looking into Izzy's symptoms on the internet, and were amazed that what she had actually had a name...Positional Plagiocephaly. It was around this time that we learned about helmet therapy.

In early July we began taking her to a Cranial Osteopath in Odiham, as we had heard good things about their results on changing babies head shapes. The specialist that we saw, said that in 15 years she had only seen two cases as severe as Izzy's. On 25th July we finally got to see the pediatrician, who diagnosed Izzy with Craniosynostosis and referred her up to Prof. Hayward in Great Ormond Street Hospital. We came away believing that the only solution was a Craniectomy (invasive and dangerous surgery) and were resolved that we would never do that to her unless her development was in question. The websites all confirmed that there was no solution to Craniosynostosis other than surgery so we stopped reading up about helmet therapy.

However, on 15th September Prof. Hayward revealed that there was no basis to what the pediatrician had said. He said that Izzy had 'classic Brachycephaly'..a form of positional plagiocephaly. We asked for his views on helmet therapy and were surprised when he said that it was definitely an option but that there were no guarantees that it would work. On the Tube on the way home we made the decision that we would try the helmet therapy. It's expensive and there are no guarantees that it will work but we'll always regret it if we don't do this for Izzy.

As soon as we got home Luce was straight on the computer sending an email to Philip Saich, who runs Headstart, and was delighted that a reply was waiting for her the following morning. He said that Izzy was at the very top end of the age bracket that they would treat Brachycephaly, but nevertheless requested photos of her head from all different angles. Four days passed, and eventually we got another email saying that due to Izzy's age and the severity of her condition they wouldn't be able to help us.

They did, however, give the name of Charlotte Foale at Cranial Technologies and we wasted no time in calling them. As luck would have it they had an appointment available for the following afternoon so, on 21st September we trekked up to London for an extremely harrowing couple of hours at the clinic. They measured Izzy's head, took photographs of her from all angles and eventually took a head cast. (below)

Izzy's helmet is being made in Phoenix, USA and will be shipped back to the UK ready for her fitting on October 5th. Fingers crossed it all goes well...

Useful Links

Plagiocephaly.Org  |  Cranial Technologies  |  Headstart

Hannah's Noggin  |  CAPPS Kids  |  MSN Group: Plagio UK