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.