Introduction to plagiocephaly (Flat Head Syndrome)

Plagiocephaly (Flat Head Syndrome)

(Please feel free to email me at ct211070@gmail.com about this topic)

We took Daniel to see a specialist Doctor in London today for the second time, and on this occasion he has been fitted with a special "helmet" which will rapidly help his condition.

Ever since a few weeks old we noticed a distinct flattening on the right hand side of the back of his head. This was mentioned on several occasions to the Health Visitor who told us repeatedly that "it would get better", or "get him to look one way when led down"

This information proved to be not only incorrect, but a waste of valuable time in treating the problem. It is obvious now from talking to so many other people that most Health Visitors and alot of Doctors are not in possesion of the facts and knowledge when it comes to this problem. The Doctor mentioned his head after a visit for another illness and seemed concerned.

In the end it was obvious that the NHS would be offering us nothing in the way of help and we were put in touch with Dr Chris Blecher, a specialist who comes over from Germany every two weeks to a house in Kensington.

Not Only NFL players have helmets!

Daniel's head was measured and he was in the "severe" bracket - he's had all the symptoms, one ear bigger than the other, ear infections and the onset of excema. The problems would also affect the front of his face and jaw-line if not treated.

Although very expensive, Daniel now has his helmet fitted and we can expect to see the flattened part of his head improve over the next few weeks. He'll wear it for 23 hours a day - with one hour off at around bath time where he (and the helmet!) get a thorough cleaning. In 8 weeks we go back to Dr Blecher for a review.

Danny has taken to the helmet very well and acts as if it wasn't there. It doesn't hinder him at all and he probably had his best nights sleep in ages last night. He'll probably wear it for the next six to seven months after which a baby's head growth change is minimal so it won't be needed.

Here is a quick introduction into this problem:

While many babies are born with an abnormal head shape, which comes as a result of the birth, most newborn heads will revert to a normal shape by the time the baby is six weeks old. If an abnormal shape persists or is not noticed until after six weeks, it is important to determine what may be wrong.

Due to the malleable nature of a baby’s skull, repeated external pressure can cause a skull deformity known as positional or deformational plagiocephaly. The repeated external pressure applied to one side of the back of the head, or to the whole of the back of the head can cause flattening.

Plagiocephaly is the umbrella term for three types of positional head deformity – plagiocephaly, brachycephaly and scaphocephaly:

With plagiocephaly, the side that is flattened will often be accompanied by a prominent forehead, which when viewed from above will give the head a parallelogram shape instead of a normal symmetric oval shape. It is also common for the baby to have misaligned ears - the ear on the affected side may be pulled forward and down and be larger than the unaffected ear.

There is also sometimes asymmetry of the face, with the affected side having a fuller cheek and a more prominent appearance. Facial asymmetry can also include a jawbone that is tilted, and an eye that appears displaced and mismatched in size. Facial asymmetry is when one side of the face does not match up with the other side. Essentially, the face appears lopsided, or simply does not look right.

Problems associated with plagiocephaly

It was initially believed that plagiocephaly was only a cosmetic disorder because it does not restrict brain growth or cause brain damage. However, some sources say that plagiocephaly can cause other problems, including: Eye problems and visual disturbances and difficulties;

Inner ear problems, ear infections and hearing problems; migraine headaches;

TMJ problems - the temporormandibular joint is the joint that operates the jaw and problems include temporormandibular joint syndrome and chewing and eating difficulties.

There is the additional possibility of children suffering psychological problems due to having an abnormal head shape.

Brilliant Progress For Daniel!

It was Daniel's first review today (05/02/06) with Dr Blecher and we arrived in Kensington this morning hoping the news would be good.

His first Plagio measurement was 2.9cm (severe) - today's was 1.4cm and in the moderate band! It was fantastic news and better than both of us had hoped for - a 1.5cm improvement in 8 weeks. The helmet was re-adjusted so he has a bit more room at the front and also for the flat part at the back of the head again.

Dr Blecher was really pleased with this progress and we are so chuffed - one in the eye for the Doctor, Health Visitor and some other parents who didn't agree. He also read part of the letter the NHS sent us regarding Daniel and said it was "rubbish". Just as we suspected!

Plus Daniel has been good as gold all day despite being in a car seat for four hours! He even met his Great Uncle Tony in Swindon on the way back so he's had a busy day.

He's been a star - good news all round.

Plagiocephaly - 10 More Weeks Of The Helmet 04/06/06

We headed down to Kensington for the fifth time today, hoping that this might be Daniel's last day in his Cranio helmet.

As it turned out, he will have another ten weeks of helmet-wearing but the news was much better than we had hoped for. The asymmetry of Daniel's head is now down to 0.4cm which was excellent to hear - the original measurement was 2.9cm (severe) and then the second measurement was 1.4cm. The third one was the disappointment as it was only 1.1cm and as it turns out it may have been because we didn't have the helmet quite tight enough.

I look very cute with my special hat!

Anyway, today'S 0.4cm reading means Daniel is now well into the "mild" form of Plagio - obviously we were hoping that would be that but Dr Blecher thinks this final phase will see a complete correction of the problem - after that it really will be goodbye to the helmet but Dr Blecher is convinced that this will be the best for Daniel and will mean as parents we have done everything possible for him after he had such a rough start.

Daniel was a star today after he was so good considering the boiling weather. We had him dressed in his basketball kit so he could be as cool as possible - we had a great 45 minutes in Kensington Park which he enjoyed too. The weather was fantastic and there were loads of people taking advantage of the summer sun. The Ice Cream man was also trying to take advantage by charging £2.50 for an ice cream! We declined to do business there!

The traffic was kind to us today. Going into London was probably the best it's ever been (as normally it's a mare, especially Kensington High St) and even on the way out we kept moving - now we have one more trip in mid-August and our visits to London will be over.

..and I look very cute without it too!

Dr Blecher said straight away how much more improved his head looked - the line on the front of his face by his mouth has gone, his overall neck movement is excellent and his head is rounding off so well. Danny even behaved himself during the measurement - in the past, like most babies, he's cried and screamed rather a lot!

Seeing Dr Blecher and getting that little white helmet was the best thing we ever did.

Daniel's Treatment Is All But Over...

Sunday September 24th will be Daniel's last day in his Cranio Helmet. He started wearing his "special hat" on December 11th 2005 and has been wearing it for twenty-three hours a day ever since with just the odd days off when he's had sores or been very poorly.

One of Danny's final "helmet" pictures.

The last session of the treatment has been a bit of an anti-climax as we'd have liked one final measurment of his head. Although we were told another appointment wouldn't be needed we were quite happy to make one final visit to London. Unfortunately Dr Blecher hasn't replied to emails for whatever reason so we're left a little in limbo as regards final statistics.

Anyway, as I've kept saying, it's the best thing we ever did for Daniel, worth all the stares, and his head is so much better as a result. Thankyou so much to the under-trained health-visitor who got us going on the road to all of this for being so blatantly ignorant.

On a more serious note though, thanks to my Mum who got us in touch with someone in a similar situation - that really did get us going in the right direction.

Now he wants to wear MY hats!

Discuss