Monday 29 July 2013

I have put together a general leaflet to raise awareness about plagiocephaly and our plight to raise the money for Finnys helmet. Please feel free to pass it around to friends and families. If you have the means do print it off and put it in your windows and noticeboards so as many people get to know about the condition as possible!! Thanks :)


The Helmet has arrived!

So on Friday Nanny, Fin and Myself took a drive up to the sevenoaks clinic to have Fins helmet fitted!!

I was feeling quite stressed about everything in the days leading up to appointment. Especially wondering if we were making the right decision. Question were going around my mind like: what if he hates it and spends the next 4 months or so in complete distress? what if its really uncomfortable? what if hes allergic? what if it doesn't work? does he really need it? My mind was a minefield of negativity - looking back though I think its just the unknown. This treatment is in Finnys best interest and I know we are doing the right thing. I think if his Plagiocephaly wasn't quite so Severe and there had been greater improvement with the Cranial Osteopathy then maybe, just maybe he wouldn't have needed the helmet. However he has had all this treatment and he still has an asymmetry of 18mm. Maybe it would have improved slightly - but do i think it would have improved enough for Fin not to worry about it when he was older? No, I definitely think the improvement would have been minimal considering his age also. So for us I am happy our choice was the right one.

So back to the clinic - Again Steve and Corrin were there to greet us and again they were really lovely. The appointment was surprisingly quick! They had his helmet waiting - very cute!! Popped it on Finnys head, he didn't really seem that bothered - although he did find the Velcro and manage to undo it - luckily they come with a clip that's stops little hands doing this the rest of the time. So the helmet fitted - it just needed to be trimmed slightly and smoothed down which took only a few minutes. I had a go at putting it on and taking it off. We had the weaning process explained (to build up to the 23hrs a day). Helmet care explained. Our questions were answered fully and we even got a mould of the expected outcome of Finnys head shape!! I have to admit - it looks amazing, I guess I'm a little sceptical that his head will be that round - but these guys are the experts, so I really am hoping. Most people have hair, teeth and curls to show there children when they are all grown up - we have a head!! They build up the model with plaster cast on the flatter areas and mould the helmet to this - so they have said we can break off the plaster cast to show him what his head was like. I'm not sure I really like it how it is right now.

So the last few days we have been weaning Finny into his helmet. He had it on for an hour Friday. Saturday he had it on an hour off and hour on and we left him helmet free to nap and sleep. Sunday we moved to two hours on and hour off and helmet free during naps and sleep. Today he is having 4 hours on 1 hour off and he has just settled for his nap wearing the helmet and being his usual good self he has settled almost straight away. He really does not seem to mind it that much at all - the only downside is all the sweat, but were giving him a little more water and hes just in a vest. Hopefully his body will adapt and the sweat should reduce!!

So what does Finny say....He says yay for the helmet!!


Wednesday 24 July 2013

Buggython!

We have our first event organised!! Please check out the details below - if you live in the area and want to join us feel free!!


Tuesday 23 July 2013

Just Giving Page!!

We have our Just giving page set up for any of our supporters who would like to Donate to help raise the funds for Finlay's Helmet. We will be carrying out some events over the next few weeks to generate sponsorship and I will be posting these when I have times and dates finalised.

I f you would like to sponsor us please do so through our Just giving page as we are raising funds alongside the Charity Headstart4babies, Don't forget if your a UK taxpayer to select gift aid. We appreciate any help whatsoever - visit the page at: my little head - Just Giving
 ...or click the link below our Banner

x

Monday 22 July 2013

Facebook!!

What a hot and busy weekend!!

Just to let you all know we have also set up a facebook page for Finny and we will be updating that with news and information. Please like and share with your friends and Family: My Little Head: Facebook

On another note I have been in contact with a lovely lady who's son has just had his helmet fitted with TIM and they completed there sponsored walk yesterday and raised over their target amount for little Melvin's Helmet within a couple of weeks - Inspirational lets hope we can do the same. Check out Melvin's Journey on facebook here: Melvins Journey

On another note to anyone who is thinking about donating I will be setting up a just giving page I am just finalising a few little things before I get it up and running watch this space!!

Hx

Friday 19 July 2013

Photography!!

Just a quick post regarding the beautiful pictures on our Banner. These were done by one of our very good friends Nicola Kirk. She is extremely talented and has taken some wonderful Photos of Finny for us. Please check out here website: http://www.nicolakirkphotography.co.uk/ and you can also follow her on facebook: https://www.facebook.com/nicola.kirk.391.
Obviously if you would like some pictures done give her a shout, I would highly recomend her and shes lovely too!!!
P.s She doesnt know Ive wrote this yet!!

Monday 15 July 2013

Clinic Results

Finny had his appointment last Friday, we took Nanny along with us too which was really nice. The drive up to Sevenoaks was blissful as Nanny Drove so we weren't all cramped in my little Tigra for once. Finny was a gem, as I hoped he slept most of the way as it was his nap time and he woke just as we drove into the car park. One thing I would say is don't trust google maps!!! We used it to find the clinic when we got out the car and it wanted to take us in the opposite directions...oops!!

So we all arrived at the clinic and shown to a little room. We were seen by Steve and Corrin who were both lovely. They started off asking us about why we had decided to go for the appointment to which we gave a brief explanation of the Finnys history. They then asked us some general questions relating to Finny and his head. Corrine then had a little feel of his head and checked for tightness in his neck - which he still has slightly so she showed us some simple stretches (so much for the Health visitor saying he was too small for any). Corrin then started to take some measurements of Finnys head and she then used this to show us where Finny sat on the chart. He measured 84% CI which measures the flatness to the back of the head, a 'normal' head width in relation to the length is 74% (+ or - 4%). So Finny has only mild flattening to the back. His asymmetry (plagiocephaly) measured 18mm (0 - 4mm being the 'normal') this measures as severe. Looking at both readings together he is in the top half of the Severe category on the chart.

The brown spot shows where Finnys measurements place him on the chart (taken from Technology in Motion Website)
Corrine and Steve advised they would hope to get Finny down into the yellow if not better with Helmet treatment and they said we could go away and have a think about whether we want to go ahead.

However we had already decided if he was more than moderate we would definitely go ahead with treatment, this is about Finnys future not our pockets! We asked a few questions about a number of different things IE success rate which Steve said was 100%. He also advised that if we were to leave it to right itself it would be very unlikely to improve much more especially as he is now over 4 months and we have tried repositioning and osteopathy. So everything seems very positive!! I feel relieved to finally just have some answers. I wonder why the NHS don't even measure babies, it was so simple and quick and no fancy equipment was involved. At least if they did this, it would allow parents to see in numbers if there babies heads are improving and if it continues or slows to halt, like ours seem to do.....

So Finny then had to be photographed. He got to sit in one of these activity, swivel toy centre which he loved (and wanted to eat) with a lovely sock over his head. The pictures where taken and Finny was none the wiser - He just wanted his lunch by then. We got to choose from a number of different helmet designs of course we went for the little cat one. We paid the deposit and booked the fitting for two weeks time!

So now we just need to find the rest of the money. The grandparents have been kind enough to offer some so with the deposit that's almost half the cost taken care of. I'm hoping to look into funding as were on a low income at the moment, but if that doesn't materialise then My trusty Plastic friend will have to come out of hiding!! If anyone has any ideas about fundraising feel free to comment!!

So wow its all go now!!

Saturday 13 July 2013

What is Flat Head Syndrome?

Flat head syndrome in babies is a cephalic (Greek meaning Head) deformation. This can arise from a number of factors which include restricted uterine environments  (multiple births, breech or after a long time in the birth canal), craniosynostosis (Early fusion of the skull plates) or from positioning - laying baby for long periods in one position. There has been a dramatic increase in the number of Positional cases in recent years since the introduction of the 'Back to sleep' Campaign to reduced Sudden infant death (cot death or SIDS) recommending parents keep there babies on their backs.

Flat heads can fall into one of three types where the 'Normal' head shape would be called Normocephalic, the other three are called Plagiocephaly characterised by asymmetric distortion, Brachycephaly characterised by a flattening across the back of the head and Scaphocephaly characterised by a long, narrow head.
  plagiocephalybrachycephaly   
Diagram1) The 3 different types of Flat heads compared to the normal (Source: Technology in Motion)

There is also a condition called Torticollis, where the head persistently tilts to one side, and the head is usually turned to the opposite side. It is also called “wry neck”. Babies suffering with torticollis are at higher risk of developing plagiocephaly and facial asymmetry.

Symptoms:

The following could be signs of head flattening:
  • head turned one way most of the time
  • head tilted to one side most of the time
  • flat spot on back or one side of the head
  • bulging on one side of the head
  • one ear more forward than the other
  • asymmetry of the face

Risk Factors

Some infants are more likely to develop head flattening and/or Torticollis. Clinical literature has identified some characteristics of infants who more commonly are developing head flattening:
  • male infants
  • first born in birth rank
  • a head shape, at birth, that is naturally wider than deeper
  • multiple birth (twin, triplet, etc)
  • a diagnosis of hip dysplasia
  • altered tone (decreased or increased tone)
  • a diagnosis of reflux

Prognosis: 

In the UK Flat head syndrome is deemed as only a cosmetic issue. However there has been research in other countries that support the view it is more than just cosmetic. This includes:
  • A high risk for learning delays and developmental delay
  • Increased need for special services when the child reaches school age
  • Othodontic and TMJ issues
  • Scoliosis
  • Visual disturbances including visual field defects, and astigmatism
  • auditory problems
  • Psychological/social issues
For those of you that enjoy reading Scientific literature this may be of interest: Neurodevelopmental implications of 'Deformational' Plagiocephaly

Treatment:

In some cases the condition can sometimes improve as the child grows, but most will need some kind of treatment to reach an improvement, Firstly the child should be checked to ensure they are not suffering from craniosynostosis.

Always, the first treatment for babies showing symptoms of flat heads that do not have craniosynostosis  should be 'Repositioning Techniques'. A baby should always be placed to sleep on its back but in addition to this parents should try and rotate the babies head while it is sleeping to relive pressure on the same spot. Babies should also have plenty of tummy time which not only relieves pressure from the head, it also help build up the babies head and neck muscles as well as helping build muscles that the baby will  use later on for sitting. Parents should also try and avoid prolonged time in car seats and baby bouncers. Also it is recommended to carry your baby with you in a carrier or sling, these keep the baby close to you but also leaves you hands free.

Another treatment in addition to the above is to see a qualified Cranial Osteopath. Unfortunately here in the UK this is not funded for under the NHS, I guess prices vary but the lady I used charged about £32 per session. During these sessions the osteopath with gently assert pressures on different parts of your babies skull to softly manipulate the skull back into a more normal position.

A babies head is very pliable for the first 4 months of life (hence the cases of positional plagiocephaly), however if after 4 months there is little improvement or improvement slows down then it is time to discuss Helmet treatment with one of the many qualified clinics across the UK. After 4 months the babies head becomes less manipulative and thus repositioning and osteopathy are likely to have less of an effect than before. Unfortunately again as the problem is deemed only cosmetic here in the UK, it is not funded by the NHS and thus must be paid for privately. Treatments cost around the £2000 mark, but initial assessments are usually free and I would recommend at least this visit for worried parents. The ideal time to start helmet treatment for the best results is between 4 and 7 months, a helmet can be fitted up to 18months, beyond this helmet treatment is likely to be ineffective.


Monday 1 July 2013

Appointment Booked!

So after a few days of consideration we have finally decided to go ahead and get little Finnys head checked out privately. He is booked in for 12th July at the Technology in Motion clinic, Sevenoaks.
I began questioning myself quite a bit over the past few days thinking is it really that bad? Maybe I am just making a fuss over nothing? What if we get there and they don't think its bad at all?....Well I eased my mind when bathing the little guy a few days ago. He used to have a bath seat but hes got to big so I lay him in a shallow bath now, but he has decided that is not fun so after washing I sit and hold him up to have a splash. Well with his hair all wet and slicked down I realised his head still looks very flat to me so for a few days at least I'm confident I am doing the right thing.
I wonder if this questioning is going to be a constant niggle in my head no matter what route we chose to go down? At least soon we will actually have some answers as to the severity of Finnys plagiocephaly...actual numbers, measurements and visuals. I just don't understand why this isn't available on the NHS. I was angered a few days ago when I read an article about an aspiring glamour model who was given Breast enlargements on the NHS (apparently for health reasons) while a little boy who needed an operation to help him walk who lived in the same area was refused treatment, these are sad times.
Anyway 11 days and counting!
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