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”.

Day 2 - Noah's first outing

This morning, for some reason, I struggled getting the helmet onto Noah. I had to take it off and try a second time. When I took it off, I could really see that it was in the wrong place and he was quite red on his forehead even in the short time it was on. He really didn't enjoy being messed about with and so we had a few tears. Once it was in the right place, he was much, much happier.

We then attempted getting him dressed for the first time. I was unsure we would be able to get his long sleeved body over his head, but it was not a problem and he was dressed in no time. Looking very sweet (as always!) he was ready to face his first public appearance!

Baby Boppers went very well, Noah and I met with friends (Tracy and Jessie) beforehand, so we were in a nice little group when we arrived. No-one seemed to take any notice and the only comment we got was "Cool crash-helmet". So my nerves quickly settled and we had a great time, especially during the spaceman song - I wonder if he felt like an astronaut with his helmet on!! :)

Today we were on a two hour on, one hour off schedule with Noah's helmet (no naps or sleeps yet). He took to the additional time really well and the hours seemed to fly by very quickly. Before we knew it, two hours had passed and we could take it off. Again, he seemed quite hot with it even with less clothes on. I'm sure this will calm down though.

He was a little grumbly today, but I think it was teeth rather than his helmet. His first two teeth popped through last week and I think more are closely following. Bless him, he was a man on the edge this afternoon, anything would bring on the tears!

He did enjoy his play date with Jessie though. He had a lovely time exploring all her toys and then her face! I think Jessie was quite taken with his helmet and can be seen admiring it in the photos below!

Rachel, the consutlant at The London Orthontic Consultancy, said that these intial days with the helmet were all about getting Noah acclimatised to the helmet and to give us practice at getting it on and off. I realised today that it is also a great way to get us used to him wearing it too. It is really quite strange seeing him in it and cuddles are so different. I know it is for the best but it is hard. I don't want to wish time away, but already I am looking forward to our first appointment to see how he is doing as any good news will really spur us on.

Day 1 - starting to get Noah used to his new helmet

Gosh, what an interesting day. I felt quite glum this morning as I put Noah's helmet on for the first time. His head becomes a cold block when I cuddle him and felt that he would think we were being horrible to him. But do you know what, he just took it in his stride. There were a few grumbles as I put it on and he grabbed it a bit - feeling it and I guess just becoming accustomed to it. He also lost his balance a few times and toppled to the side or back, thankfully there were plenty of cushions in place! Other than that, he carried on as normal playing and testing out his voice!

So today, we had to do an hour on and then an hour off, and not on for napping or sleeping. So as the day worked out, he had it on for just under 3.5 hours.

 These were taken during his first wear of the day, I even managed to get a cheeky little smile!

This footage was taken after his second wear, you can see his head got quite hot - I am told that this will get better as his body becomes used to the helmet. You can also see where it has pressed into his face. Again, the material inside the helmet will compress a little as it moulds to his face so this shouldn't be a permanent thing.

 

These two photos were taken a little later in the day, his head seems to be tilted to the side a bit more than usual. I guess he has to not only get used to the feel but also the weight of it (it's about 360grams).

I cleaned the helmet out after each wear (with special solution the clinic provide) as he did get rather hot. After his last wear of the day, you could see clearly which parts of the helmet are touching his head and which are not. The areas that need to be held were sweaty and the areas that need to grow were not. Amazing how they make the helmets, you do wonder if you have it on quite right and if there is space in there for his skull to grow and move, but this for me was the proof.

After dinner, Noah had a lovely long bath, he didn't want to get out tonight. We then enjoyed lots of cuddles before popping him into his cot.

Tomorrow he will wear the helmet for two hours and then one off, again no napping or sleeping in it. We also have our first trip out with his helmet to Baby Boppers - bit nervous. I don't know if other parents will ask about it or stare. It will be interesting to see what reception we get as you just don't see them on babies! Are they that uncommon or do parents take them off in public? I thought once we started looking into them we would see them everywhere, but we haven't. So it will be an interesting day I think!

The fitting of Noah's LOCband

The big day finally arrived and I was surprised at how nervous I felt as we got closer to the clinic. Noah, in his usual way, took it in his stride and slept all the way there :)

His helmet looks great, really smart, blue with planes, cars, etc all over it. A really great pattern for a little boy - I will post some photos tomorrow for you to see.

The consultant, Rachel, popped it on his head as soon as we arrived so she could check the fit and to also see if it needed modifying at all. Noah's ears were a little squashed so she reshaped it slightly and other than that it is a good fit. It is custom made for Noah's head from the scan they did two weeks ago. Amazing how they do it.

She showed me how to take it off and put it on and also how to clean it, etc. She then ran me through the acclimatisation programme!! It will be interesting to see how Noah takes to the helmet as during the consultation he seemed pretty OK about it all!

Rachel then remeasured his head. His head circumfrence has increased by a couple mm in 2 weeks, but the overall shape has remained the same. It made me feel even more glad that we are doing this - if it is growing, but continuing in the wrong shape, it reconfirms to us that this is the right thing to do.

So tonight when we got home, we had lovely cuddles without his LOCband, tomorrow will be a very different day.

Noah's first few months

Our gorgeous boy, Noah Eric Donovan was born May 27th 2011. Mum (that's me) and Dad couldn't be happier. Noah had a great birth, it was a water birth as I had hoped for and he arrived within 4.5 hours of being in the pool. Trauma free, we felt he had a wonderful arrival into the world. 

As far as we were aware there were no problems with the shape of his head at this time, although he did like to keep his head tilted to one side most of the time. (I think alternating his head whilst asleep might have been briefly mentioned once, in a fleeting conversation, but that was it).

So, still covered in lots of vernix and a little bruised, everyone was happy for us to go home.

Once at home, we had trouble with feeding and Noah had turned quite yellow within 48 hours. Thankfully the hospital were not concerned and his colour improved over the next few weeks. Noah was tongue tied and so struggled with feeding, but that is another story!

Life settled fairly quickly into a routine and we actually had to set an alarm in the night to make sure he fed enough, he was happy to sleep and sleep and sleep! We did try to turn Noah's head, but it was always hard to do so and so the majority of the time he slept on his left. We hadn't heard of Flat Head Syndrome at this point.

We used socks as scratch mittens, they were the only things that would stay on!

 

 

This was Noah's usual sleeping position. Looking back, it seems obvious this wasn't right.

3 Months

At Noah's 3 month check up with the doctors (first injections) we mentioned to the doctor about his favourite side and how his head looked flatter on the left. We were told that this would sort itself out and that this was nothing to worry about and that was it.

Already Noah is too big for your moses basket!

So I went home and had a look online, I read about encouraging play on the other side, tummy time and trying to alternate his head when asleep. Over the next few months we did all we could to try to encourage Noah to look to the right and to not lie him on his back when possible, although this is difficult when at this age sleep still forms such a huge part of his life. 

After reading about the simple steps that can be taken to help avoid Flat Head Syndrome, we felt so upset. Why hadn't we heard about this before? We knew about tummy time, but not that this would help with his head. And we could have tried to reposition his head more when asleep. It was just so upsetting.

5 Months

Learning to suck his left fingers gives Noah comfort but adds to his head being tilted to the left.

By about 5 months we felt that infact his head had got worse rather than better. We were doing as much tummy time with Noah as we could, but it was hard as he never liked this. Even with Boo (our cat) in front of him, entertaining Noah, it was always a struggle! So as soon as he was able we did lots of sitting up playing. 

At around 5 months we talked to another doctor who this time advised that there are two types of Flat Head Syndrome and that Noah didn't have the type that can be serious and rather that he had Positional Plagiocephaly. He referred us to a colleague who also confirmed the same and that the NHS do not do anything for this, time would heal it. But we didn't feel convinced.

After looking this up online we found that whilst there were cases where a child's head did change back more to its natural shape, there were plenty of cases where this didn't happen. We purchased a special pillow at this point to try and help as repositioning whilst asleep was so difficult and thought this was worth a try.

6 Months
Noah is growing so fast and we are starting to see some improvements, however we know his head growth is slowing now and so we are feeling even more anxious. His head is quite lopsided at the back and sometimes when looking at him from behind, you think he is looking to the left, but actually his face is forwards.

After talking to a friend we decided to go and see her Chiropractor about Noah's condition. The Chiropractor, Alastair, advised that Noah had tension in his neck and spine and so this would not be helping him to turn his head and therefore could have contributed to his head now being flatter on one side. 

After our first session we couldn't believe how easy it now was to turn his head once asleep - it was one extreme to the other. Although it was never been diognosed, I am convinced he had some Torticollis in his neck. 

Now when we go to check on Noah, once he is alseep, we sometimes find that he is already looking to the right - completely unheard of until we started seeing the Chiropractor.

We have also had a consultation with the London Orthontic Consultancy and have decided to have a LOCband helmet made from him. He has an asymetry difference of 15mm (Plagiocephaly - flattening to one side) and also has Brachycephaly (flattening at the back) as well as his ears being out of line and the front left side of his forehead is moving forwards slightly. We were stunned to see the scan as it highlighted so clearly the shape of his head.

When Saeed took Noah's two diagonal head measurements, I didn't want to know how bad the difference was. It was like it was going to be found out that I have been a bad mother and have not taken care of Noah. It was so upsetting.

And that brings up to date.  Tomorrow we head to Bristol to get Noah's helmet fitted.

Whilst the next 4-6 months are going to be tough (he will have to wear the helmet for 22-23 hours a day), I'm sure Noah will take to it like a duck to water. And ultimately we know we are doing everything we can to help his head return to its more natural shape, so it will be worth it.

Cuddles on Boxing Day