Flat head syndrome.

lauren_1

I am really annoyed at both my HV and my sons GP, my first son has very severe plagiocelephaly and I was completely fobbed off for about a year and as a result his head is still BADLY mishsaped at the age of 5, I was finally listened to when he was one and sent to a specialist who told me we had been referred far too late (we should have gone when my son was 4 months) I tried a lot of tummy time, sleep curve mattresses, goi goi pillows, tummy sleeping and side sleeping all form about 8 week of age but didnt help at all.

Now my second son has a very alarming flat spot, my midwife told me catagorically NOT to buy a baby nest pillow as they will stop him from being able to turn his head if he is sick and they can contibute to cotdeath! So i religiously alternated which side his head laid at bed time but he always gravitates to the left side due to a forcep delivery it has been that way since birth, and all the others that i tried for my first son.

At his 6 week check I was fobbed off that he would grow out of it...funny enough she said the same about my son and refuses to refer me to the specialist.

My main point is I want to know about going private for a starband, has anyone used one or managed to get one through the nhs?

pigpen

Why are you seeing the HV? Go speak to the GP who can actually make the referrals.

For private appointments you still need a referral from your GP

shelley_crow

I'd get a second opinion hun, especially given the experience you've had of this in the past. My friend's first child had the same condition and came against refusal to refer, she tried another doctor at the practice and he was happy to make the referral.

davidswife

I had a similar situation with my son. My GP wasn't convinced so I asked for a private referal as time wasn't on our side. It cost £150 to see a consultant and no further action was required but it put our minds at rest.
As the others said - see your GP and demand a referral.

All the best.

Alleycat

We went through something similar with our now 1 year old son. We hadn't had any issues with our daughter, so didn't know about the alternating sleep sides etc. We asked our HV about it when he was about 4 months old and she fobbed us off. We then mentioned it again at just over 5 months as it had got progressively worse. Again we got fobbed off.

We eventually went to see a private clinic - Ossur (Technology in Motion) at their clinic in Wimbledon (they've got offices in other parts of the country too) which was really interesting. When they measured his head it was at the lower end of treatable. We initially decided to treat with a helmet but after sleeping on it changed our minds. If his measurements had been worse we would definitely have proceeded with a helmet. The cost would have been approx £2000.

You mention that your baby favours one side due to a forceps delivery. Have you been told anything about torticollis? This is where the neck muscles are tighter on one side and can happen after forceps or where the baby has been laying with their head pressed when in your uterus or birth canal.

It may be worth looking into cranial osteopathy first as I have heard that this has helped some babies enormously. We decided to use a sleepcurve mattress which I think stopped the flat head getting worse. Although he is 1 now and there is still a noticeable flat side to his head. Sometimes I do wish we had proceeded with the helmet but it was such a tough decision to make given his measurements.

There is a clinic I think in Manchester or it might be further north that treats on the NHS but you need a referral and I think it is pretty tough to get one that is accepted.

Just as an aside, you don't need a GP referral for an appointment with a private practice. You just ring up and book an appointment.

chaliepud

Hi

Sorry to hear you and your boys are going through this..

My elder son (now nearly 12 years) had, actually has plagiocephaly, being he was our first child and having far too much faith in other people we did nothing and he still has a flat spot, though not as noticeable now. Most cases of plagio are causes by torticollis, a tight neck muscle which results in a child being more comfortable facing one direction, making the flat spot worse. Although we could do very little to change things we did organise some cranial osteopathy for him which identified "tight spots", we think these sessions were crucial in addressing some coordination episodes that we believe were caused by the plagio/torti.

My younger son, now aged 6 developed exactly the same condition very soon after birth, we tried the pillows, laying him on his stomach etc etc etc, to no avail, the HV was useless, as was the Dr and specialist we were referred to, there were a couple of hospitals at that time that were prescribing the "helmets" but none in our area. In the end we went for a consultation at the London Orthotic Consultancy in Kingston Upon Thames and paid just over £2k for a LocBand (not particularly money saving and we appreciated that were fortunate to be able to afford it). We were pretty happy with the results, if we had got it earlier the results would have been a bit better (he was 10 months I think when he started wearing it) but definitely do not regret our decision at all.

The actual wearing of the Loc Band wasn't as bad as we thought, he got used to it very quickly, 23 out of 24 hours is tough but I do actually think it was worse for us than him, but we were very fortunate, through the plagiocephalyuk support group website (not sure if its still running) we met a few other local families in the same position, we like to think we educated lots of people locally taking our four helmeted babes here there and everywhere!

Hope all that makes sense, I just wrote it as I remembered it, but feel free to ask me anything!

TeamLowe

can i ask what exactly is the issue for your child having a flat patch on their head? is it purely an aesthetic one or is there medical issues caused by it?
i only ask because myself and about three other family members have a flat patch on the back of our skulls and it's never bothered us x

poppyolivia

same here my 6 year old has it...when the GP eventually AGREED with me after a million appointments at hospital etc he was too old for the helmet..it was like speaking to a brick wall!

Good luck and PUSH PUSH PUSH for it!

ps my sons doesn't sound as severe as yours.

Teamlow..it can give your child severe jaw problems, headaches, hearing can be affected too..read a wee bit about eyesight too years ago but not sure about that although my son has a very strong prescription??? about +6.75 in each eye....he's getting his hearing test redone agan ashe failed it, but think this is normal in this aged child..either way he really wants a hearing aid..kids eh?lol

edited to say (cause its bringing it all back)..I'm in Inverness in the Highlands and at the time the first doctor really tried putting me off paying for a helmet (3~4k)..as the nearest place to do it for him was in Leeds..now I think they do it in Glasgow??..he said he could see what I was meaning and didn't think it was worth the hassle and a referral...but I kept going to different doctors and got put up to the hospital where that doctor said he should have been seen ages ago as he did have it and I'd been fobbed off (but the leeds thing was right and I would have to had gone down there every second week)

lauren_1

My gp does the 6 week checks.

I suppose it is only asthetic but when he looks like the side of his face has caved in and he gets stared at its not fun.