Deciding to stop

After our last review Finley had a series of illnesses including a chest infection with high temperature. I just couldn't face putting it on him when he was ill even when his temperature went back to normal. So we have stopped. We have a review on 3rd January to rescan for the final results so we will see whether the hand measurements were accurate and if there has been any change since we stopped.

I dont feel we achieved much of a result. I guess that's why some providers refuse to helmet older babies. The results are often not worth the money or time for the paying customer.

Will report back in January with final figures.

Merry Christmas to all Finley's blog readers!!

Decided to keep going

Well we had another review yesterday. According to the measurements there was a further 2mm at the back which now shows a percentage severity of 97.45%. I got the impression that Saeed thought we should stop but that it was our decision. I figure that if we've got room and we've paid our money we may as well get the most out of it. I think, compared to others, we've got our money's worth out of LOC but I am not sure we have the results!

I think we should continue until he outgrows the helmet.

In the waiting room at LOC Finley came across another little boy with the exact same design helmet. They came face to face and stared at each other in disbelief for a few seconds. Quite amusing.

Next review in 6 weeks. 29th November

Some pictures

Here are some pictures I took tonight while Finley was in the bath. Such a darling sweet thing. I'm so thankful he is a happy healthy boy after all we went through ante-nataley (for those of you who don't know, we were only given a 5% chance of having a normal baby after a very high nuchal fold measurement at 12 weeks) but I do think we have failed him head shape wise. I don't think its improved that much at all.



Excuse the snot - what a cherub!!

No change again

Although Fin's head circumference has increased by 2 mm there was no change to the width and depth measurements. So he remains at 98.7%. Saeed said there was very little movement left in the skull. He said we should continue on for another 6 weeks and if there is no change then we might have to make the decision to stop. So our next appointment is on 18th October.

My feel is that if there is room in the helmet we should carry on. But we'll see what happens in October

Small Change

Just a 1mm growth at the back this time brings severity down to 98.7%. Slowly but surely....

Saeed said he could see more growth very low down at the base of Fin's neck which the calipers wouldnt catch. He said there was a marked difference from last time. He sees so many heads in a month I'mnot quite sure how he would remember them all, sometimes I think he is trying to humour me. He made some adjustments at the base of the helmet to ensure the new growth would not be obstructed.

Fin was unwell yesterday and didnt sleep with his hat on. We were worried about him getting a fever as he has a chest infection and is on anti-biotics.

Next appointment 7th September.

No Change

Up again at LOC yesterday and for the first time there was no change. Saeed reckons the sutures are closing and I cannot feel the fontanelle on the top of his head anymore. This means that while we could still see progress it's going to be very slow. Fin does not seem to be bothered by the hat at all so we are going to carry on for a while longer. There is still plenty of room at the back of the helmet to allow for further growth. Appointments have been changed to leave a longer gap in between.

Our next appointment is now 1st August in 5 weeks time.

More growth

We have cause for celebration as now Finley's head is below 100% severity. There has been another 2 mm growth at the back which makes the percentage 99.35%. This is 9mm growth in all. I can see that at the bottom of the neck there is now a slight curve out whereas before it was just flat from the neck right up to the top. I've added a picture at the side.

Here are the stats:

Age months 16.5
Head Circumference (cm) 50.1
Head Width mm 153
Head Depth mm 154
Severity 99.35%

I asked Saeed about going to night wear only. I think with the warm weather coming Finley is really going to suffer. Even in these milder days his head is really sweating. His growth is so slow I can't see it would make much difference. Saeed said the head is growing all the time, day and night and we would only get half the benefit. We will persevere but I'm going to be really disturbed if I see him suffering with the heat.

Next review in 3 weeks time.

Another 2mm at the back

Another LOC visit today. Finley has grown a further 2 mm at the back although no increase in head circumference. This is a 7mm growth at the back in total which we are really pleased about. His severity percentage is now 100.66% . I think we may have to celebrate when he gets below 100% and his head becomes longer in depth to its width!

Here are the stats:

Age months 15.75
Head Circumference (cm) 50.1
Head Width mm 153
Head Depth mm 152
Severity 100.66%

Friends who see Fin helmetless have been able to see the difference. Someone said we should stop because it looks normal which is great. I am still extremely critical of it. I think the length of his hair is exactly right to disguise it. When it is wet in the bath it is still really flat.

Next review is in 3 weeks on 6th June.

A fine example of successful repositioning

Below are some pictures of Eli whose Mum, Jessica, has kindly let me use to show how repositioning CAN work. I think the results are spectacular in such a short space of time (7 weeks). Congratulations Jessica and Eli, all your hard work has been rewarded.

Here he is at 18 weeks

Here he is again at 25 weeks

Jessica is using several techniques: A sleep positioner at night, head supports for the car seat, bouncer, highchair, swing and playmat as well as a bumbo, exersaucer and jumperoo. She also tries to hold Eli as much as possible.

FINALLY a tooth!!!

After 15 and half months Finley's bottom two teeth are finally growing through. We can see the top ones through the top of the gum as well so I don't think they will be far behind. Thank goodness - Hopefully mealtimes can take a little less time now!!!

Visit to the Doctors

We went to the Doctors today on an unrelated matter. The GP gave us a bit of a funny look when we walked in. After talking about why we were there the GP said "And the helmet is to stop him hurting his head?" I was a bit shocked that she had no idea what it was for, but when I told her she was really interested. She made notes and said that she wasn't aware that this treatment was available and that she will be updating the other GPs in the surgery about it. I took off the helmet and showed her the back of Finley's head and also the inside of the helmet where we were expecting the growth. I was glad to be able to show her an example of one that didn't grow out. Perhaps they will change what they say to concerned parents.

More great results!!

We were up at LOC today and to my surprise there was another 2 mm measured at the back and quizically a 1mm reduction at the sides (?) making a new severity percentage of 102%. I was convinced there was not going to be a change so this has really cheered me up today.

Here are the statistics:

Age months 15
Head Circumference (cm) 50.1
Head Width mm 153
Head Depth mm 150
Severity 102.00%

A few pictures for the record taken today:

Next review in 3 weeks on16th May.

Finley's singing

He can't walk, talk and he has no teeth but he can hum a tune!! Or "da" a tune should I say.

Do we have a gifted child? Is it 12345, once I caught a fish alive this week and Beethoven's 5th next???

Another review tomorrow

We are up at LOC again tomorrow - I don't think there will be any change as I measured his head with a tape measure and it is still only around 50 cm.

We've had a couple of issues. We have had great weather here, lots of lovely warm sunny spring days. Finley's head got a bit pink where there is a gap in the helmet. Normally we would have put a sun hat on him but this is just impossible. I'm spraying factor 30 on the exposed part of his head and rubbing it in his hair. Not ideal.

Finley has had a helmet free 24 hours due to temperature and sickness. I think he has had more trouble sleeping without it actually!

I dont know how anyone can get used to it. I hate it already. I cannot kiss or stroke Finley when he needs consoling and I really miss that. In the lovely weather it just seems a bit cruel for him to sweating underneath it. He gets quite a lot of attention but most people think that I am some over protective mother who doesnt want him to bash his head on anything.

I've been lurking on an American message board for older kids with this problem It seems that children older than 2 can be fitted with a helmet, albeit after a long struggle with health professionals. Then they just wear it at night. I would love that to be the case with Fin. I cant see them agreeing to this at LOC though - Peter thinks we would only get 50% of the benefit.

LOC review - progress at last.

We had an LOC review today and Finley's head has grown 2mm ALL AT THE BACK!! Hurray we have some progress at last. Saeed said that the growth normally starts at the bottom of the neck and rises and his calipers may not catch the growth that is right at the bottom. I was pretty sure there would be a change as you can see it.

Here are the stats:

Age months 14.5
Head Circumference (cm) 50.1
Head Width mm 154
Head Depth mm 148
Severity 104.05%

So everything is moving in the right direction - we've just got to keep going now.
It's not really a problem for us, Finley sleeps through the night in it and with his walking and climbing antics I actually feel he is safer with it on. When we take it off for cleaning there always seems to be an incident and his head ends up with some kind of bruise on it!

Next review at LOC is in 3 weeks time on 25th April.

Video of Finley walking

If you want to see Finley's first steps please scroll down to the bottom of the screen and click the arrow to play. Oh and also his new trick - clapping hands!!

Depressing

We are going away this weekend and are going to do a lot of cycling. Finley will be on the back of Peter's bike in Jack's old bike chair. I was pondering on whether Finley's helmet would protect him. I think not, the helmet is not designed for crashes. So I dug out Jack's old first helmet. Not a chance, it didnt fit around the sides, so then I tried his 8 year old sister's hat, oh my god - this just about fits and looks absolutely ridiculous it's so huge on his head.

I cried this afternoon - this has been the first practical thing that has given us problems. Up until now its just been what he looks like.

Finley's first steps

Finley took his first steps today at our music group, he has been balancing on his feet for a while now but not putting one foot in front of the other until today.

Helmet is going really well, he is sleeping beautifully in it and I am so happy that it appears to be a better fit. I took it off the other day when we had friends round and they said they can already see a difference. We thought so too but were wondering whether it was just our imagination.

I'm really pleased - I've had my first comment on this blog!! Thanks Jessica from Seattle.

First Overnight

Finley had his first overnight with helmet last night. Usually I need to settle him a couple of times before he drops off in the evening but he went out like a light first time! Then he slept all the way through until 6am.

What a darling little boy we have!!!!

Feeling positive

Went up to LOC this morning. Fin had worn his hat for 4 hours by the time we got in to see Saeed. It was weird because after the lipstick test (putting red lipstick on the sore patch and the putting helmet on shows the exact place it is rubbing inside) it didnt show up as rubbing anywhere, just a little tiny bit at the bottom.

Saeed made some adjustments and said to put it on once the redness had gone down later today. I put it on for the afternoon 1.30-5.30. When it came off it was looking really good - still a bit red but a much smaller area than usual. So tomorrow's plan is on all day with a quick check half way through to make sure its not going horribly wrong then first overnight tomorrow night if all goes well during the day.

Finley is becoming a bit of a climber: He has worked out how to climb on the sofa and from there up the back to the windowsill behind - of course no idea about how to get down. I have had to put cushions under the sofa seat to make it too high for him to climb onto. But the worst - he climbed out of the bath yesterday, I had my back turned for a few seconds and looked round just in time to see his head hit the floor. He's ok but there were lots of tears. Peter reckons he won't do it again!!

I think with all these antics its probably safer that he does wear something to protect his head.

Pictures

My new haircut!













The dreaded sore patch - this is after 12 hours off overnight














My head shape - no change since the last pictures although I think it doesn't look so bad with my hair short.

Day 3

4 hours on one hour off today, the sore on the side of his head is not really recovering well in the hour off. Its not a bump (yet) but I think it needs an adjustment. I spoke to LOC, they said I could go up tomorrow but we've got an appointment on Wednesday morning and we are really busy tomorrow with kid's stuff so we've agreed to do another 4 hour programme tomorrow and then get an adjustment on Wednesday. Will have to see what it looks like tomorrow morning and make a decision whether we put it on or not. If it is at all red its going to stay off until Wednesday - we cant risk another 2 weeks of bumps and scabs.

We have given Finley a number 3 hair cut all over - he looks like a little thug!! But it must make his head much cooler in the helmet, makes it a lot easier for us to see red spots and makes it much simpler for applying cream.

He seems to be adjusting better heat wise and has not been very sweaty at all in it today.

Days 1 and 2

Here we go again - 1 hour on 1 hour off yesterday, 2 hours on 1 hour off today. We havent done very well today in that its only been on for about 4 hours in total. Its so easy to think that when he is upset its because of the hat. This morning he had it on for an hour and then became increasingly upset, after we took it off he had a long sleep so he must've been really tired. Then again when it went on later he was very tearful but this was due to hunger I think. I couldn't believe how sweaty his head was, absolutely dripping from the hat and loads of droplets on his forehead. Quite shocking really. The lump on the side of his head is all but a little red dot now but it has been getting redder under the hat. I'm thinking of taking a photograph of it tomorrow morning when it is just small and then again after bath tomorrow night just as a record. I'm really worried this is going to flare up again.

Tomorrow will be the real test with naps and a normal busy Monday.

A bit more positive

I felt sick in my stomach going up to LOC this afternoon. I just really didnt want to go through this again.

Feeling better now that the new helmet has been fitted. Finley did cry a bit when it was going on and off but towards the end he was getting quite tired. Saeed showed me that the area where the bump is is now not touching the helmet at all by using the lipstick technique. He made the measurements again and Finley's head has grown 3mm in circumference - 1 mm to the side and none at the back since the last review 3 weeks ago.

Disappointing but I'm finding the measurements a bit hit and miss and I guess when they are doing them by hand what's a mm here or there. I wonder why Saeed always wants to know the previous measurement before he starts, it makes me think that there is a bit of room for manipulation maybe as a form of incentive or something?

Finley is at nursery on Friday all day and it would be unfair for the staff there to keep having to take it on and off so we are going to start again on Saturday. Hopefully we will have a smoother ride this time and it will all become second nature in a couple of weeks.

New Helmet tomorrow and thoughts

Well Finley gets his new helmet tomorrow. I cannot believe it, it seems like so long ago that I am back getting used to his head shape. The bump is STILL there albeit a lot smaller and the scab only fell off this afternoon. I'm having mixed thoughts about this new helmet. His fontanelle is almost closed - probably only 2 or 3 mm to go. LOC said once this is shut then treatment must finish. I'm not sure why this is and will clarify tomorrow. I'm wondering whether we are going to make that much difference not and perhaps we are going to be the example of what happens if its left too long. With all the troubles we have had its actually been nearly 8 weeks since our first visit to LOC.

I was out the other day with a friend at a play area and she pointed out a boy with brachy. She said she wouldnt have been aware of it if it hadnt been for Finley and although I was fascinated to watch this little boy, who looked about 4, it didnt really look that bad.

I'm going to ask LOC to measure his head again tomorrow - will be interesting to see whether there has been any change and in what direction!

Re-scan and new helmet

On Sunday the bump had healed with the scab dropping off. Finley wore his hat for about 4 hours and the bump was starting to look really red again. By Monday after another 4 hours wear the scab was back and the area was still very raised.

Today at LOC, Saeed re-scanned Finley's head and we are going to get a new helmet in 2 weeks time. Hopefully this could be the beginning of better times.

We had a look at the two scans and it looked like there was a bit of growth at the back on the left hand side but on the side view there didnt appear to be much difference. Hardly surprising as he has had so little time in it.

Finley has been quite ill anyway with a temperature, conjunctivitis and streaming cold so I'd have not been happy for him to have been having to cope with the helmet on as well. His little face looked so sad today with feeling under the weather - he really looked like he was feeling sorry for himself, poor lamb.

That's it now for a couple of weeks - hopefully we will have better news then

Getting a better fit

Up at LOC again yesterday. Saeed had real problems putting the helmet on and made Finley really scream. Saeed spotted that the front of it was quite tight on Fin's forehead. He went away and made a load of adjustments and when he put it back on I could not believe how easily it went on and without tears from Fin.

Now all we have to do is wait for this scab to heal and then I'm hoping and praying we will be back on track. Hopefully by the weekend.

At the end of my tether

Its difficult to know what to do for the best but last night after resolving to but the helmet on regardless for a nights sleep it was looking worse than ever after bath and when all the cream had been washed away. Red raw. I'm begining to wonder whether this is worth it. I'm not convinced we are going to see much growth in Finley's head anyway as it is already big compared to the rest of his body. Anyway - we didnt put the hat on last night and this morning the lump had actually scabbed which really upset me.

I phoned LOC and spoke to Saeed and we are up there tomorrow at 2pm. Maybe we need a new helmet that fits better, or more adjustments to this one, or our money back because I'm starting to lose it a bit!

LOC 2nd Review - no change

We had our second review at LOC today. What a relief, Finley's head hasn't grown a mm with all measurements remaining static. With all the hatless time we have had, my worst nightmare was a growth spurt that made everything worse.

The lump on the side of his head is still there. Some days it seems better than others.

Saeed made another adjustment to the helmet today and says he is hoping that Finley should be sleeping in it by Monday.

After our controlled crying escapades he is back to sleeping through so I'm hoping that this will continue when we go to nightwear. He quite happily naps in it during the day.

Day wear only 'til Friday

I was expecting this blog to be updated once maybe twice a month with some news on Finley's progress - it seems to have become a daily saga and I'm getting really exhausted by it. I know we have to carry on but it's becoming very draining...

Fin had his helmet on 4 hours on and 1 hour off today, there was so much cream on it I didnt know what was going on. After bath when it was all clean and visible it was still lumpy and red. I phoned Saeed, he said he had another mother with the same issues, she persevered with day wear and no night wear and one day the lump just slowly began to subside. He says there is not much more he can scoop out of the helmet. Fin seemed quite happy in it today - it didnt really bother him and he napped in it twice - I'm not so sure about going the whole night with this lump so with Saeed's agreement we will do day wear while he still doesnt seem to be concerned about it but not night wear and discuss what we should do at our progress review on Friday.

We had a better night last night - controlled crying seemed to work after a shaky start. He appears to have gone to sleep very easily tonight. Peter is definitely off to work tomorrow so it has to be alright tonight.

Another cranio osteopath visit tomorrow, maybe she can do something for this lump with her healing hands.....

ANOTHER visit to LOC and more......

Finley's swollen area was still a bit pink this morning and still a raised lump. It looked like it was definitely on the mend. We got an appointment with Saeed at LOC at 10am. Saeed had trouble putting the helmet on as the lump was interfering with the fit. He scooped out a big part of the helmet where the lump is and said he could pack it up again once it had subsided. Finley wore the helmet all day but when I took it off again tonight the lump was back and very red. He has started another night without it - lump caked in Sudacrem. I suppose I will have to ring Saeed again tomorrow. It seems this lump is taking over our lives - I just want to get on with it now.

On top of this Finley has become so bad at sleeping. We've been giving him milk when he wakes but last night (another hatless night) he had a HUGE 4th meal just before bedtime. Weetabix, yoghurt and a banana. If he woke in the night it couldnt possibly be because he was hungry. Peter was fortunately here. We were on shifts. He did the night and then I took over about 5am allowing him to catch up on sleep. Finley was awake every hour until 3 then Jack was up and down until 6am woken a lot by Finley's blood curdling screams!! Peter amazingly didn't feed him - I think I may have cracked if it had been me. To prove a point when I finallly gave Fin a bottle at 7am he only drank half of it - clearly his interrupted sleep was not through hunger after all.

I think controlled crying, however much I detest it, can be the only answer. If we can get Fin to sleep through Jack will follow I am sure.

A hatless weekend to come

I spoke to Jo at LOC this morning and we have agreed to let the lump and redness get completely better before putting the hat back on. I think realisitically this could be Monday. I'm not too concerned as Finley's head growth seems to be quite slow. He was quite miserable in it yesterday and for the first time was putting his hand up to take it off several times so I think the sore must be bothering him. I think once the swelling has gone down and properly healed we should be ok. If not, then its back up to LOC next week I expect....

The bump is back again!

Another night looming without the helmet. I took the hat off earlier and the bump was back bulging and red. I think we need to keep it off until its properly healed. I dont really understand how it can be ok for a few days and be back as large as life after a few hours. Will have to ring LOC AGAIN tomorrow - I hope we dont have to go up there again. I'm already sick of the journey even though its only 3/4 hour. Could be worse, there are some people coming from abroad to get appointments so shouldnt feel so resentful.

Cranio Osteopath (C0) and LOC 1st review

A big day for Finley's head with two appointments.

We saw the CO today. A bit of a weird experience. I can't see it looked like she was doing much. She just seemed to be holding his body and then his head. When she first started I was going to ask her when she was going to get on with it! I know a lot of people say great things about osteopaths in general so I shall reserve judgement. It will be difficult to see whether this is effective or whether it is the helmet therapy but it could be both so we are going to continue for while. She wants to see us once a week for the first month. She reckons Fin has a lot of movement left in his skull which is good news. She says she may also be able to improve Fin's immune system which will hopefully help with his susceptability to cold viruses.

First review at LOC was very quick as we had been up there on Saturday. Things are moving in the right direction. There has been a half a percent decrease in the severity percentage but this has been brought about by only 1 mm. His head width measurement remains the same with a 1 mm increase from front to back. Here are the statistics:

Age months
12.5
Head Circumference (cm)
49.6
Percentile
95th
Head Width mm
153
Head Depth mm
146
Severity
104.79%

Saeed had a look inside the helmet. You can really see where it is holding his head and the foam at the back where we need the growth is not at all disturbed.

We are up at LOC again on 16th February for our 2nd review.

More sickness

For the record(!): Another night has begun without helmet wear. Finley didnt keep his dinner down and fell asleep at 5.30pm while I was putting his pyjamas on. Now fast asleep on his back nestling nicely on his flat spot.

I can't imagine for one moment there will be any improvement for his review on Wednesday I just hope we don't see any regression considering how little time he's been without his helmet due to sores or sickness....

LOC emergency adjustment

I phoned Saeed this morning and got an immediate appointment for helmet adjustment. I must say the service we have been getting from LOC has been outstanding. It never seems too much trouble and we've been able to get to see Saeed at very short notice without a problem.

Saeed put red lipstick on Finley's bump and then fitted the helmet on. He could then see exactly where he needed to shave out some foam from inside the helmet. He also drilled some ventilation holes in the back. We have to leave the hat off until tomorrow and then start 4 hours on 1 hour off with overnight. Just to let the bump's redness calm down and heal properly.

Its been lovely to have Fin's head back for a short while, I keep kissing and stroking it!

The bump is back

Finley's hat was on all night again last night. No real problems but today he really hasnt been well: coughing all day and has not been able to hold solids down since lunchtime when it came up all over him, the kitchen floor, the hall and the bathroom! Took hat off this evening and the bump is back over his right ear and was looking pretty red. Had pretty much decided to leave it off tonight due to coughing but after his bath the skin on his bump had broken which confirmed our decision. May very well be up at LOC tomorrow for an emergency adjustment.

This is quite frustrating - I just want to get on with it now.

First overnight and trips out today

Finley slept through last night apart from a bit of a blip at 10.30pm which lasted about 15 mintues. This is quite rare for him but not unheard of. Would've been tempted to blame the helmet but we are trying not to. He woke at 5.15am but then not til 7.45!! The lump had gone right down when I took his helmet off so I'm a bit more relaxed about that as well now. He's up to 22 hours out of 24 with 2 seperate 1 hour breaks. This is what it's going to be like for the next 6 months or more...

We went to a softplay area with Jane and Sonny this morning. A lot of children were tapping his hat and one girl tried to take it off! I came back from the toilet and there was a whole crowd of children round him asking Jane questions. She said it was to protect his head. Peter thinks we should say he is able to communicate with aliens with his hat on!

I think he is going to get quite a lot of attention.

I'm so pleased he seems to have adjusted so well. His character hasn't changed at all. He is still the happy, smiley little fella he's always been.

Day 5 - Lumps and overnight wear

Can you believe it - Peter comes back for the night and they both sleep through for the first time in 2 MONTHS!! Had a lovely 10.5 hours sleep though - I feel good today!!

Took Fin to LOC this morning and Saeed adjusted the helmet, put a slit in the side which has really helped a LOT with the on/off sagas. He wore it til 4pm after that. He still has a lump but has now fallen asleep in it tonight. First night, fingers crossed it doesnt get disruptive later. Peter's still here so it will be a shared experience.

First trip to Sainsbury's (and out with Fin's hat on really) today. I got a few stares but thankfully no comments. Those that cooed at him didnt mention it. I tried not to give anyone eye contact. I'm not sure I'm ready for questions yet. I've been told that old people are the worst for disapproval and inappropriate questions. I was ready for my "He's just had brain surgery" answer but I never got to use it.

Day 4 - Helmet Wear

Last night was really bad. Fin went off to sleep too easily last night and woke again an hour later. Cried miserably for ages. I took the hat off – it was my first reaction – it had to be the problem. He then proceeded to cry for another 2 hours and finally fell asleep at 21.30. Jack was also up until late with his virus and had me up every hour until 5.45 when he announced he had finished sleeping!! Peter is coming home tonight to help with tonight’s onslaught thank goodness. Fin had his hat on all day today (8 hours) but when I took it off there was a large lump above his right ear which was quite red. Phoned LOC and we are back there tomorrow for an adjustment. No overnight wearing again tonight they have advised.

Jack had a terrible morning with virus and had very little to eat today. Seems a bit better tonight although after a late nap he didn’t fall asleep until 8.30 which hasn’t given us much of an evening. I’m off to bed to try and get some sleep after last nights 4 hours!

Day 3 Helmet wear

Finley’s hat is going really well, he even had a couple of naps in it today albeit a bit on the short side. First overnight to night, Peter is away and I’m not looking forward to it.

Jack has hand, foot and mouth! He has a nasty blister on his tongue and hasn’t eaten all day.

Hope he is ok for nursery on Wed.

Day 1 with helmet

Fin’s first day of helmet wear. We are not very good at putting it on and his hair keeps getting caught as we clumsily take it on and off. Peter gave Fin a very fierce haircut while I was out, almost bald around the ears. I think this is better though, his head gets very sweaty in the helmet and his hair had been stuck to his head when we took the helmet off. Hopefully this will be more comfortable for him. We did 3 hours of wear today at hourly intervals. He seemed ok with it and not particularly bothered. It’s easy to think that when he is crying it’s because of the helmet but he soon stops if we feed him or rest him just like normal.

His character seems to have really changed after his haircut – he seems to be zipping about the place much faster and getting cheekier by the minute.!!

Finley's fitting at LOC

We went to LOC today to see Saeed. I’ve been dreading it – reading about other mums and their heartache with miserable babies. I had prepared myself for the worst. It actually went ok, he didn’t seem to notice it the first time and was easily distracted. He tried a bit to take it off the second time and only after a few minutes wear his head was incredibly sweaty with damp hair. We have to dress him in lighter clothes to compensate.

We have to build up the wear over the next few days:

Tomorrow 1 hour on 1 hour off
Sunday 2 hours on 1 hour off
Monday 4 hours on 1 hour off – with napping
Tuesday 8 hours on 1 hour off with napping and overnight.

Then he has it on all the time with two one hour breaks for cleaning. I think first few nights are going to be hard. Imagine having to sleep in a motor bike helmet? We have to keep the room cool.

Peter and I practised putting it on and off in front of Saeed.

Saeed reckons CO can help with therapy although he said the CO they deal with only sees babies once a month. Will speak to the CO in Aldershot on Monday and make an appointment. My view is – if it might be able to help more then we need to try this too.

He looks quite cute in the helmet but I wish we didn’t have to do this.

Cranio Osteopath

A Cranio osteopath (CO) has been posting on the msn site suggesting that CO sessions can work alongside helmet therapy. I found a CO locally in Aldershot, Christine Clements and spoke to her yesterday about Finley. She hasn’t had experience in the brachy/plagio area but was willing to talk to the CO that had been posting on the site.

After speaking with CO site guy, Christine Clements (CO) got back to me and reckons she can assist with Finley’s treatment. She had a long chat with the CO that has been posting on the site today and feels she now knows what she can do to help. I said we would talk to Saeed about it tomorrow. Consultations are not cheap, £35 a pop, and she reckons she should see him weekly.

Finley’s birthday and Health Visitor (HV) one year check

Health visitors have been notoriously unhelpful in the past about Finley’s head, I’m really annoyed that we didn’t get better advice earlier. Our usual HV wasn’t there when we turned up but the place was empty so I had a great chance to say my piece without being hurried along.

Gladys Iyun (HV) was actually quite interested. I wanted to get her to think twice about telling people it would grow out on its own. She seemed quite receptive to the idea and wanted to know more. I told her that if we had had proper repositioning advice earlier on at 3 months when we first got really concerned we wouldn’t be where we are now. Also if we had been asked to come back the HVs would have been able to see it wasn’t getting any better and could have directed us to a helmet provider even just for proper measuring. We would then have had proper statistics to show the severity and could’ve acted much sooner. Gladys gave me her e mail address and wanted all the information. She said she was going to give a talk to the other HVs soon and she could include this. I hope she does – at least Farnham mothers might be better informed….

Finley is 50th percentile for weight and length but 95th percentile for head circumference. I hope he hasn’t done mad head growth and his body is catching up. We need lots of head growth now so that the helmet can guide it to the back.

Finley’s check up with renal paediatrician (RP)

Finley’s right kidney does not function – it is just a bunch of cysts. The condition is called multicystic dysplastic kidney. This was highlighted at our ante natal scans and we have been seeing a renal specialist from day one. His other kidney is good and is working for both. RP was hoping the bad kidney shrivels up and disintegrates on its own. Unfortunately it’s still as large as life and hasn’t changed in size since our last visit in July. He’s not too worried about it but wants to see us in a year’s time. They might have to remove it if it still has not shrunk. It can cause hypertension and possibly become cancerous if it’s left.

We then talked about his head. (At the last visit RP was confident that it was not effecting his development but didn’t really touch on the cosmetic issues). He agreed that Finley was sporting a fine example of the condition (!) But he talked about helmet therapy as a waste of time and money. He was still expecting it to grow out on its own over time. I then told him we had decided on helmet therapy and told him I was disappointed that we hadn’t been given any advice on this course of action. If only he had known more about this condition he could have measured the severity back in July.

He was actually quite apologetic. He stressed that he was a renal specialist and this wasn’t his field. He even agreed in hindsight he should’ve referred us back to the GP to get seen by a more specific consultant. Maybe that still wouldn’t have directed us down the right road as NHS professionals haven’t been pro helmet therapy by anyone I have come across since doing my research. I had some consolation from his regretful attitude. Perhaps if he ever comes across this again he will take a different approach – that’s all we can hope for.

Meeting with plagio site mums

Finley, Jack and I met up with some mums and their kids from the plagio site. We met at Shepperton play zone. I was a bit late and recognised the group straight away! It was really good to see some unphased children wearing their helmets and the parents being so calm. There was even one little boy (14.5 months) who was walking around which made me feel a lot better about Fin’s late treatment. Another girl there was starting treatment the Monday before us so I feel a bit like we are in this together from the start.

I’ve been feeling a LOT calmer since the meeting especially about how it will effect Fin’s character.

I’ve become increasingly anxious and obsessed with Fin’s head. I can’t seem to think of much else at the moment. I keep reading stuff from the msn site and getting more nervous. Apparently the first week getting babies used to the helmet is pretty horrific.

Please please let it be alright for our cheerful little cherub!

Finley’s appointment at LOC

Finley had 106% brachycephaly. Here are the measurements:

Age months
11.5
Head Circumference
49.5
Percentile
95th
Head Width cm
153
Head Depth cm
145
Severity
105.52%

As suspected his head is actually wider than it is to depth. A severe case. (Anything over 89% is considered severe)

As Finley is older than most babies who get treatment, Saeed warned us it was going to be a tough long road and wanted to be sure we were committed. He is likely to be in his helmet for 6 – 8 months maybe longer. Once the fontanelle closes treatment is no longer effective. Fin’s fontanelle is pretty small now. Saeed is aiming for a 10% reduction. Which means Fin’s severity would be down to 95% - this is still considered severe but his head should look a lot better. We are going for the look above the statistics.

We’d made our minds up that we were going to go ahead with this before we got there so after a small break we handed over the cash (£1950 – to include all consultations and helmet) and Finley had his head scanned with a laser to get the measurements for the helmet. We have an appointment in 2 weeks time for the fitting.


On the way home we were quite quiet, we are so mad with ourselves for not getting this done sooner. If only we had been recommended to a helmet provider sooner then the treatment would be for a lot less time and more effective. We can only try to think we are doing the best for him now and that’s all we can do.

I took some pictures of Finley’s head in the bath and posted them up in the picture gallery on the site for the record.

Peter came home from a week working away. I showed him the site and the responses to my discussion. I was amazed to see some more threads attached in response to the pictures – more people urging me to go ahead. Sometimes your friends and family are just not honest enough!!

We’ve made up our mind – we are going for helmet therapy. I’m convinced it’s the way forward.

I realised I had made a bit of a mistake with Finley’s head measurements. His head is in fact wider than it is in depth. The true severity is definitely over 100% - more like 110%.

Starting to really worry about Friday now.

I had an amazing response from my post, lots of people urging me to get an appointment at a helmet provider. Just to make the measurement, discover the true severity. They said that initial consultations are free with no obligation. We’ve got nothing to lose so I phoned the LOC (London Orthotics Centre) in Kingston and we have an appointment for Friday at 11am with Saeed Hamid

I decided to post up a discussion in the message forum:

Hi Newbie Sarah here!

My son Finley will be one in a couple of weeks and has brachycephaly – a word I have only just discovered while trawling this site at great length last night. I’ve tried to measure the severity with a ruler and a keen eye and it looks like about 94%. We are considering helmet therapy now as there does not seem to be any improvement now that he is sleeping less on his back and is active and upright most of the day. I have a few questions that perhaps some of you can try and answer:

Has anyone found an easy and more accurate way of measuring the head without callipers? I am a bit annoyed that we did not try and make this measurement when he was much younger and then we would have had proof that there has or has not been any improvement

I have 2 friends who know someone whose head changed on its own but I cannot find anyone who can reassure me personally. Where are these people whose baby’s heads changed without therapy??!!

I understand that professionals want to say this because there is a cost issue to the NHS but why can they not say “Its cosmetic and therefore not something the NHS can support but it might not change and if that’s the case private therapy can work?”

I would really like to meet up with some people with these issues and was disappointed to see that I had just missed the New Year Surrey meet. I am in Farnham and would be happy to meet up locally and as far as Kingston if anyone is interested

Finally, if I could be convinced helmet therapy would work on a baby as old as ours we would go ahead with it but feel frightened when reading about head sores, poor sleep and very distressed babies. I am worried now that we have left it so long it may be less effective anyway. Comments anyone?

Thanks in advance for your help!

Sarah

I did some research on the internet and discovered that Finley has brachycephaly and we are not alone by any means. I joined a support group on the internet for concerned parents with this condition:

http://groups.msn.com/plagiouk

This site also deals with plagiocephaly where the head has become lop sided and this can also cause facial asymmetry, uneven ears and different sized eyes.

I found out that brachycepahly can be measured in severity by taking a width measurement (from ear to ear) and a depth (from forehead to back of head) and creating a ratio percentage. Anything over 89% is considered severe. I took a ruler to Finley and with a keen eye I worked out that Finley’s severity was around 94%.

INTRODUCTION

My name is Sarah, mother of two sons: Jack 3 and Finley.

Finley was born on 24th January 2006. His head shape was fine when he was born but by three months he had developed a flat spot on the back of his head where he slept. Finley is a good sleeper, we used to lay him in his cot and then in the morning there he was in exactly the same position. He began to roll really late (about 8 months) but still continued to sleep on his back. Health visitors, GPs and paediatricians that we have seen about it since we noticed it have all said it will grow out in time and not to worry about it. I had heard of helmet therapy but was really reluctant to go down this route so we stuck our heads in the sand, crossed our fingers, listened to the professionals and sat back and watched nothing change in his head shape – if anything it was getting worse.

As Finley approached his 1st birthday we became more concerned that it was not going to grow out on its own.