Our gorgeous boy's amazing final head shape

Noah’s helmet is off!! We went for our check up a couple weeks ago and the clinic (Rachel) confirmed that his asymmetry had reduced by another 1mm to 3mm, and his Cephalic ratio was now down to 85% - he had reached both his target measurements.

Noah’s head is now back to it’s natural shape (based on the average head measurements) and she was happy to discharge him. We discussed the remaining 3mm difference on his asymmetry and whether it was worth continuing any longer to reduce this. We all agreed that the difference would be so minimal, if even noticeable, that it wasn’t worth keeping his helmet on for any longer. And as he grows more, that 3mm (which you can’t even see) will become a smaller and smaller percentage of his overall head measurement.

The before and after 3D scans below say it all really!

All evidence of FHS gone!

These photos aren't very flattering! But I thought it would be useful to share these too as you can see the physical changes. The hair net is to help hold his long hair down!

This is an image I put together, keeping the before head shape just within the after - you can really see the areas of growth.

It was amazing to take Noah home that day helmet less. It felt like we had a new little boy!! We can’t get enough of hugging him and being able to kiss his head - anywhere!! A simple thing, but it is so wonderful.

And we are soooooo happy with his results. Noah wore his helmet for just under 5 months in the end, the time passed really quickly and it so quickly became normal to see him wearing it and the routine involved with keeping it clean. But the transition to no helmet was even easier!!

We did wonder if he would he bump his head more or be wobbly on his feet with the change in weight to his head (it weighed just over 300grams). But it really didn’t make any difference at all, which was so wonderful.

We also feel lucky as he wore it during the colder months and so didn’t get too hot wearing it. It also meant that his helmet didn’t get smelly until about 4 weeks until it came off. Rachel said we had done very well on that front!!

He also wore it whilst learning to crawl and walk - great protection for his head, it didn’t hold him back at all!  

Our gorgeous boy on his first birthday.

So all in all our helmet experience couldn’t have been better, Noah’s head is amazing and we are so happy that we were able to do this for him.

In addition to his helmet treatment, we are still seeing the chiropractor. It is great to have someone monitoring his skull now that his helmet is off. His head shouldn’t regress at all in shape now that he is mobile, sleeps any which way and his skull bones are less soft, but even so it is great to have that reassurance.

I hope that this blog will be of use to other parents in the future. We have found that whilst our experience has not been unique, there still isn’t much information out there about Flat Head Syndrome and how to treat it once it gets serious.  

Just a little bit of information can go a long way and I hope that by sharing our experience, I have helped to fill that void.

Two more check ups and more progress

 

I can’t believe it’s been two months since I last did an update - a lot has happened in that time!

We have had two check ups at the Bristol clinic, many chiropractor appointments and Noah has started walking - so we have had our hands full!!

 

Some photos during helmet cleaning time!

And Noah testing out his legs :)

Noah’s progress
At our first of the two LOC appointments, we were advised that Noah’s asymmetry had reduced by 1mm and no change on the cephalic ratio. It was a little disheartening to think that in 4 weeks there hadn’t been much improvement, but we were warned that as time goes on, changes would be slower. Also, we measure Noah’s height and weight about once a month and knew that he hadn’t actually grown a lot, so it kind of made sense that his head would be a similar shape.

Having fun at the play area in front of the LOC Bristol clinic

 

At his second LOC appointment last week, we were hopeful of a little more change. From our measurements at home, we thought he had grown in the last month and hoped that would mean his head had changed too. And it had! His asymmetry had reduced by another 1mm and his cephalic ratio/Brachycephaly had reduced by 2%.

So, his head is now just 4mm different with the asymmetry (3mm being the average) and his cephalic ratio/Brachycephaly stands at 86% (which is in the normal range).

The clinic eased off the foam around the front of Noah's face as it was getting very tight

Our Chiropractor appointments have also been really good. The Chiropractor has said that the work he is doing now is building on previous work and that Noah’s skull is reacting well. With the helmet holding certain areas of his skull we feel it is important to go to these sessions as it helps to keep things moving, encouraging movement in the right direction.

Bath time is always when we have a good look at Noah’s head, when his hair is wet you can see it’s true shape. We are so pleased with its appearance now and whilst we can still see that there is a slight imbalance, it is nothing like it was.

Flat Head Syndrome in the news
Since starting the treatment and also writing this blog, I have been feeling a lot happier about Noah’s head and how he is progressing. It was really hard before we started, I felt incredibly guilty that his head was the shape it was and although I couldn’t have done any more, I felt like I should have. It was hard emotionally and we never felt satisfied that his head would ‘sort it’s self out’.

His helmet and chiropractor appointments are having a real positive effect on the shape of his head and I feel that through this blog we are also raising some awareness - and hopefully helping others.

Then, about 4 weeks ago there was an article in the paper and also Jeremy Vine (BBC 2) ran a debate on Flat Head Syndrome and also discussed helmets - both of which were not exactly positive. It brought back all the old emotions of how I felt about 6 months ago and it made me so angry.

There is a real lack of knowledge about Flat Head Syndrome out there, not only by Joe Public, but also from the medical profession. There seem to be such strong and negative opinions coming from those with no first hand experience and for us parents who are going through it, it’s very upsetting.

I really believe there needs to be a study into Flat Head Syndrome so there is a better understanding of it, including helmets and how they work and chiropractic treatment and how this can effect change.

As new parents, we are all advised to put our babies down to sleep on their backs, however this is having an obvious effect on the number of babies with Flat Head Syndrome. Why do the medical profession seem to be ignoring this? Is it because they don’t want to pay for all the helmets?!! I would love to know what the actual stats are for babies and the shape of their heads. I think that there would be some surprising figures based on conversations I have had since writing this blog and also through just being more aware of babies head shapes.

I would also like to know what the NHS’s real stance is on helmets is. We were told by many doctors that Noah’s head would ‘sort it’s self out’ and that helmets are not available on the NHS. However recently, I have discovered that they are available on the NHS. What is going on here?

For new parents going through the turmoil of trying to find out and decide what is best for their baby, the information and advice out there is massively inconsistent. It really is down to the individual and how much you research and push the doctors and services around you. It shouldn’t be like this.

The shape of your babies head is not a superficial, parents being shallow thing, which is how I was made to feel. It is a real issue that it needs to be addressed by the medical profession. They need to know more about the real Flat Head Syndrome picture and acknowledge that not all babies heads ‘sort themselves out’. They need to look out for the symptoms, including Torticollis, and help parents with positive advice and actions they can take. More tummy time or ‘their hair will cover it’ should not be the standard answer.

We still get some funny looks or comments when we are out. Why some people choose to be negative I do not understand. If I saw a baby with a helmet and didn‘t know what it was for, I would be concerned for the baby and parents. So, we just do our best to brush it off and ignore it. We couldn’t be happier with our decision - his head is an amazing shape and we can’t wait to show it off very soon.

Looking forward
Our next LOC appointment is in 5 weeks and we have been advised that this could be a discharge appointment - if we are happy with the measurements taken/shape of his head on that date. We can continue with treatment for as long as we like, but the clinic are looking for his head to be at least 3mm on the asymmetry and 85% on his cephalic ratio (middle of the normal range).

They have taken loads more foam out from the inside of his helmet, so much so that you can see daylight through the plastic when you hold it up to the light! He has maximum growing room and so we are keeping everything crossed for lots of growth this month :)

 Our cheeky chappie 

We are truly stunned at how fast Noah’s head is improving

Bubbles everywhere... even in my ear!!

I really can’t believe where the last few weeks have gone again, time is just flying. In the last few weeks Noah has learnt to crawl and there is no stopping him now! He started to crawl a bit about two weeks ago, and now he can get a good speed up. He has his own style of crawl, it’s a bit crab like, but he is mobile!! He is also really enjoying walking (whilst holding our hands), and has stood a few times without any support - just for a few seconds. It is wonderful to see him like this as he really enjoys moving about, exploring his surroundings.

I read an article before we started his helmet treatment saying that a helmet could hinder development in crawling and walking. I don’t know how common this is but it really hasn’t been the case for Noah. If anything its made it easier as Noah is free to lie, roll and do what he wants to do, rather than me worrying about him lying on his back with his head resting on the flat side.
Noah has been wearing his helmet for 8 weeks now and we’ve had another check up. His head circumference has increased by another 4mm in 3 weeks and his asymmetry has reduced by 4mm! So amazing, he is growing so fast at the moment - much to our advantage with seeing results quickly. He started at 15mm asymmetry difference. In his first review he had reduced this by 2mm, then 3mm at the next review and 4mm this time. So his head is now down to 6mm difference, the measurement we were told we should be able to achieve when we started treatment (3mm being the average difference). His cephalic ratio/Brachycephaly, has also gone down another 1% to 88%.

Our next appointment is in 4 weeks now and Rachel, the consultant, took quite a bit out of his helmet lining to allow for further growth (we could see this clearly as these areas look nice and clean!!) His head shape is now more like a triangle, and we are hoping that at his next check up his Brachycephaly % will have decreased even more. This will make his head more oval shape, the final stage in returning to his head to a more natural shape.
We are truly stunned at how fast Noah’s head has improved, as I mentioned before, he has grown so much in the last two months. In 6 weeks his overall head circumference has increased by 11mm - that’s a lot when you are only 9 ¾ months old! 

Noah is sleeping on his front, back and sides now - we are pleased as it will take the pressure off the former flat spot when he stops wearing his helmet.

At the start we were advised 4-6 months of helmet wearing for Noah, now we wonder if we could be looking at 3-4 months. We are still taking Noah to see the Chiropractor regularly and everything combined is working wonders. It is so exciting and so reassuring to see how things have progressed. It was such a big decision for us (there can be some quite negative people/articles/etc out there), but we really couldn’t be happier. Roll on his next check up!!

Growth spurt, means amazing results in our latest check up!

   

The last three weeks (since out last helmet check up) have absolutely flown by. We have been to the Chiropractors 3 times, went to Cornwall to meet Grace, my beautiful niece, Grandma came to stay and did I my first wedding fayre. 

Proud sisters and their little ones - welcome to the world Grace and congratulations to Charlotte and Ross :)

In that time, we have got completely used to seeing Noah in his helmet. Gone are the days where I used to wonder what people were thinking when they saw it and no more do I feel nervous about taking him to new places. It is a part of him and to be honest, he actually looks a little strange when he hasn‘t got it on!!

Noah has become so mobile in the last few weeks, he wants to stand all the time and can now pull himself up. He mastered this in Granny and Grandad’s bath - eek! He is getting onto all fours more often and so we don’t think it will be long before he starts crawling. He is also rolling about a lot more and so his helmet is providing him with a bit of protection!! I think partly this spurt in movement is due to us being less worried about him lying on his back, and also removing his pillow from his cot - he has a new found freedom and he is loving it!

Playing with Great Grandpa's stick...

... and Great Granny's glasses - much to her delight!

The only negative side to the helmet in the last week or so is that it was getting harder to get it on and off. He was getting quite upset again when getting him dressed and putting his helmet back on. So we ended up getting dressed in front of the TV, ‘Show me, show me’ was an amazing distraction!!

At our check up this week, I had a little guess at the results and I wasn’t far wrong. All of a sudden, Noah’s head is looking so much better. It’s once flatter shape is a lot less noticeable.

In 3 weeks his overall head circumference has grown by 7mm! When he was measured at the initial consultation his head circumference was 463mm. It is now 478mm, an increase of 15mm since his helmet was made. Rachel (the consultant) though he must have had a growth spurt and was really pleased that we had caught this! His asymmetry (diagonal difference) is now down to 10mm (a reduction of 3mm since our last visit) and his front to back/side to side ratio is now down to 89% (from 92% last time).

We are truly amazed! In just one month of wearing his helmet, we are nearing half way there, such an amazing feeling. We are so lucky that we caught his growth spurt, but I think also being such a big little boy helps as generally he just seems to grow so fast.

Whilst we were there, Rachel adjusted his helmet for us. We had noticed that the front left was pushing into his cheek more and at the back the helmet had rubbed a little bald area. That night, I couldn’t believe how much easier it was to get his helmet on and also, the tears were gone. I wondered if it was just a fluke, but it has been the same ever since. So those small adjustments have obviously made a world of difference to Noah - hopefully his little bald patch will grow back now also! In fact, we can’t believe how fast his hair is growing now. We can’t wait until the helmet comes off to show off his new locks!!

So it is just under 3 weeks now until our next appointment. We have been advised to not expect that sort of amazing growth each time, but even so, we feel like we are well on target for Noah’s treatment being complete by his birthday. What an amazing present that will be :)

Our eyes were not deceiving us - great results already!

What a great week we have had. Noah had an appointment with Alistair the Chiropractor at the start of the week. He wiggled a lot, whilst Alistair was trying to work on him. As every week passes, Noah gets stronger and stronger and it is quite a challenge to keep him lying in a good position!
 

Wriggling aside, Alistair advised that overall Noah is much more balanced in his head, neck and back. Alistair also does some work inside Noah's mouth, feeling the roof of it (where all the skull plates come together). Again, he said that things are starting to feel good in there too. Thankfully this time, Noah didn't nip him whilst he was doing that part of the treatment!! It was great to hear that he thought things were improving as we had been thinking this too. His head no longer tilts to the side and he sits much more upright when in his high chair at mealtimes.

Then yesterday, Noah and I travelled down to Bristol for his first helmet check up with Rachel. When we arrived, we took his helmet off and Rachel put a stocking style hat on his head, flattening down his hair so she had a clear view when measuring it.

His head has grown well in the two weeks since we collected his LOCband, and although he has only been wearing it for 10 days full time, already Rachel was able to confirm that things are improving.

His asymmetry (comparing the diagonal measurements) has gone down from 15mm to 13mm. We have been advised that 3mm difference is average, and that they should be able to get Noah down to 6mm, maybe even lower. So that was great news. For us, the lop-sided-ness (at the back of his head) is the most noticeable of the two types of flat head syndrome he has.

She also measured his head front to back and then side to side. Noah was 94% at his original consultation (this is the cephalic ratio/Brachycephaly). 70-86% is 'normal', Noah is now down to 92%!

So all in all fantastic results. We are thrilled that already we can see the helmet and chiropractic work are changing his head shape – we weren't imagining it! It fills us with confidence that soon Noah's head will return to it's natural shape. As I mentioned in my previous post, life has settled into a routine now (with his helmet) and already time is flying – it really shouldn't be long before he is helmet free again :)



Bath times are cherished :)

7 days full time in the LOCband and Noah is doing great

During the last week, life has settled down with Noah's helmet. He is now on his 7th day of wearing it for 23 hours and he is completely oblivious (it seems) to his cool hat!

Noah is 8 months old today - where has the time gone!

We have a regular routine where we take it off for 15-20 minutes in the morning to dress him and clean his helmet. We then will take it off at bath time for about 40 minutes for a good splash (Noah not the helmet!) and then getting him dressed. We are now also finding it much easier to get it on and off, so there have been hardly any tears at all when putting it back on - a huge relief for us.

This week we did have an appointment booked with Rachel at the clinic. If we were having any problems it was a chance for us to chat things through or get anything checked. But we were feeling OK about Noah’s progress and were happy to not go pending one question which I was able to clear up in a phone call to Rachel. I was concerned that his helmet was too tight over his left eye. When he looks up, his forehead and eyelid are held down (so he looks like he is squinting in one eye). I did wonder if this is because the helmet is tighter here to hold this part of his head in position, giving the other side time to catch up. Rachel confirmed that yes, this is what is happening. She suggested some Vasaline to help with the sticking and also advised that over time the inner material will bed in a bit and it won’t be so tight. Since that call, we have actually seen some improvement in this area and it doesn’t seem to be so tight on him. We also sometimes lie Noah on his back once his helmet is on to reopen up the helmet a little to get it into a good position on the front of his head. This seems to really help. 

 

We were a little worried that the helmet might restrict movement when he is asleep, as the side Velcro fastening catches on his sheet. However this morning we found him at the most unusual angle, His head was at the right end of his cot, but his feet were also up there too! We are not worried any more! 

Over the last week we have had some wonderful reactions and brilliant conversations about Noah’s helmet and Flat Head Syndrome. One day we were spotted in the shops, a lady with her newborn saw Noah and knew his name (from reading the blog). The ladies on reception at the Chiropractors were interested to see him with his new hat! A girl stopped us in the library and said that her son had been through treatment with a helmet and that his head is perfect now, you would never have known it had been flat. We have also heard of 3 other babies (through friends and relatives) that went through the treatment, again all with great results. So it is really reassuring for us and also great to get more people talking about it. Even friends who already have babies commented that they had not heard of Flat Head Syndrome. So if we have just made a few more people aware then I am happy! We have also spoken to quite a few parents who’s children also have varying levels of Flat Head Syndrome. Some have grown out of it, some have not. And even a young boy came over to us at the doctors today to enquire about his helmet. He thought it might have been a cycle helmet - maybe he wanted one like it! So it is really interesting the reaction we have had so far and the conversations its started.

We have our first check-up at the clinic on Tuesday afternoon. It will be so interesting to see what they say. Has there been any change? Liam and I are thinking that is starting to look better already. It may just be wishful thinking, but by just taking the pressure off the left side of the back of his head must be helping. So fingers crossed, and I will update you next week with details of how we got on!

Day 5 update - Noah is now wearing his helmet 23 hours a day

On the whole the last 3 days have gone very well. We have gone from Noah wearing his helmet a few hours and then off again, to being on 23 hours a day - today was his first full day.

On Friday, Noah wore his helmet during a nap for the first time. He had no problem at all and fell asleep in the usual way. The next nap time fell on a break, so he didn’t wear it then. Overall he had it on for a good length of time during the day wearing his helmet and we felt confident to let him sleep in it for the night (as suggested by day 3). He did brilliantly. We heard a few squeals from him as we went to bed, I think we might have disturbed him, but after checking his covers and making him a little warmer, he slept soundly for the rest of the night.

So on Saturday morning, we were able to take his helmet off for an hour to give him a rest, as we are still in the process of building him up. We gave his head a good check over and found two red patches on the left of his head (over his ear), and one to the back of his head, each about the size of a 1p piece. So we kept an eye on them and in the end kept his helmet off for a few hours as the one on the back of his head took a long time to fade. Eventually when we were happy, we put lots of Sudocrem on the patches that had been red (as suggested) and also around his forehead and cheeks. Where we had been using Vaseline previously on his face, he looked like he was getting some pimples, so we have switched as maybe the Sudocrem is a little more breathable?

His helmet then went back on and stayed on until bath time. We had a lovely bath time on Saturday night, Noah is loving holding onto the side of the bath now and tries to pull himself up. So cute. We had lots of giggles as we played for about 20 minutes. After this time, we got him dressed, put lots of Sudocrem on again and then tried to get his helmet on. I don’t know quite what happened but I found it really hard and the first attempt went wrong, So we took it off and tried again. Poor Noah, he screamed so loudly and got very upset. It broke my heart. It is bad enough if he cries when he bumps his head, let alone to think that we were doing this to him. I ended up in floods of tears, so much so that Liam (my husband) took over, got his helmet on and took him to his room for milk. I was so glad he was there to do that as I don’t want Noah to see me getting upset about his helmet. I don’t want him to pick up on that as it just won’t help him. Once I had composed myself, I went and said good night. He was smiling away, and as always looked very comfortable in his helmet - it made me feel happier to see his grin.

It really is tricky getting his helmet on, you have to line up the front first, before getting it over the back of his head and into final position. On Saturday I was really struggling to get it around the back right side of his head, the area that is bigger. It is quite tough to pull the helmet open enough and Noah is constantly moving about (even sat in his Bumbo), it is a very tricky thing to do. I know it will get easier as Rachel at the clinic did it with ease!! We just have to keep going.

Again, he had a brilliant night in it - no squeals at all! So this morning, he had about a 20 minute break whilst Liam cleaned it and then wore it all day (including both naps) until bedtime. Today was his first full day. He seemed to be back to his old self. Chatty, smiley and shouty! He seemed less subdued, even though he is still very dribbly. He seems to be completely used to wearing it now. 

Today we went out into the garden for a bit, Liam did some exercise and I did a little gardening. We wrapped him up warm and he played with some toys whilst watching us for about half an hour - all the time, we knew his head was lovely and warm! When we came back in, we took some layers off. It is still tricky to know quite how much he needs on, but I think we got it more right today. He was defiantly less sweaty when we took his helmet off tonight.

Noah had all his meals and milk wearing his helmet today. I was a little worried about how dirty the white foam layer might get especially at food times, but it passed the tomato based meal test today! I thought his might have really stained it, but by leaving it to dry and then rubbing it off, it left hardly any mark. I don’t want him to look like a scruff bag in it!!

So all in all, a good 3 days and when Granny rang this afternoon to check how our little astronaut was doing, I gave her the thumbs up! He is much more used to it and we are much more used to seeing him in it. I have gone from feeling sad about him wearing it, to feeling like if he doesn’t have it on we are just potentially adding time to the process. I defiantly feel much better and easier about it all now (apart from last nights blip!) and look forward to the day we can’t remember which side of his head was flatter. Whenever we take his helmet off, either Liam or I will ask the other “Is it ready yet!” - we can’t wait for the day the answer is “Yes”.