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Children's health

10 month old 52cm head - urgent referral

22 replies

sarx82 · 13/11/2023 13:46

I'm absolutely beside myself with worry. I have always noticed my little one had a larger head but didn't know it was a concern.

He had he's HV review who told me it's completely off the charts. I saw a gp this morning who called paediatricians department after measuring herself and they have asked to bring him in tomorrow to be seen urgently. I'm so worried and so angry at myself for not knowing this is something I should have had him seen about.

I never measured it myself but always noticed it was a 'big head' in comparison to hes siblings.

I can't see anywhere online of a baby with a head 52cm without something being seriously wrong. I feel terrible. He's such a happy loving boy... I feel like I should have noticed.

Does anyone have any advice please. It's going to be a long 24 hours waiting for answers 😭

Has anyone ever had this and it be ok? Sad

OP posts:
OhBuggerandArse · 13/11/2023 13:59

My dad had a massive head as a baby. He ended up being a professor of philosophy 😂(true thing). If your boy seems happy and healthy otherwise please try not to worry till you've seen the medics and they've given you some context for what they're investigating. Are there bigger heads elsewhere in your family?

Robotik · 13/11/2023 19:34

Hi op, is he meeting developmental milestones and otherwise fit and well?

Sumerian · 13/11/2023 19:43

My ds had a massive head at the 1 year health visitor checkup. Like way off the top of the centile chart big.

Just like you we'd never noticed his head shape/size. Now i look back on photos and I'm baffled how everyone missed his giant head.

We were referred very urgently to paeds, they did a scan to check for hydrocephalus. That came back clear. They did full blood panel, which showed very very low levels of vitamin D. He was diagnosed with rickets, given lots of vit d, frequent blood tests till his levels reached almost normal.

Hes now a healthy, funny, energetic happy 10 year old. He still has anual bloods taken to check his levels. But the only permanent side effect has been that we have to buy him adult sized hats as the child size ones don't fit him. He has a haircut that hides the bossing on his foreheadand no one really notices his slightly odd shaped skull.

DiverseButters · 13/11/2023 20:11

My husband had such a huge head that the drs thought he had some kind of syndrome as a child.

He was tested for all sorts, turns out he just had a huge head in proportion to his body as a baby. He's grown into it and looks normal now.

Oakdog · 13/11/2023 20:23

My DS16 had a huge head in all his scans before birth, had to have checks and an MRI when he was 6 months old, well above 100th centile. Turns out he just has a huge head. It's really hard to buy hats, but other than that, no problems.

YouAndMeAndThem · 13/11/2023 20:25

What was his head size at birth? What centile was he on then?

Arthursmom · 13/11/2023 21:07

Both my brother and nephew have massive heads! Same deal, caused concern but they’re just huge heads for some reason. My brother did eventually grow into his and my nephew is looking much more proportionate now at almost 4! Hope all is well op!

sarx82 · 15/11/2023 20:43

@OhBuggerandArse we don't have big heads if anything smaller ones. It's the Jump in centiles that worries me ! 😟

@Robotik yes except he doesn't crawl yet but cruises furniture
@Oakdog
@Sumerian thanks for sharing your stories . Unfortunately we had a terrible consultant who told me he's not worried and not scanning him. He's head is way off the chart and he probably has 'fluid around the brain' which can drain itself and doesn't think he requires a scan because he seems ok in himself. I told him I'm not happy with that and he basically argued the fact he won't be giving him one. I'm so so worried now have been in tears all day.

OP posts:
sarx82 · 15/11/2023 20:43

@YouAndMeAndThem he was 90th centile and followed the line perfectly

OP posts:
TiredMummma · 15/11/2023 20:57

Sorry to hear what you are going through OP. Definitely ask for another referral. It might be fluid around the brain and nothing to worry about (fairly common- see Paris Hilton!) but surely it's not worth the risk?

sarx82 · 15/11/2023 21:04

@TiredMummma this was mine and my partners argument to him yesterday. My health visitor and gp have both agreed he needs more checks but they can't by pass the paediatrician. The only option I have is driving an hour away to a specialist children's hospital and going into the A&E department myself. I have called round all the local private hospitals and none will scan a child under the age of 5 Sad feel so let down for him. It seems like people get checked for it so quickly. I'm so upset and angry. He told me the risk of radiation from a CT scan isn't worth it. I've seen he can have an MRI. My gp has told me to complain to the hospital pals as soon as they open tomorrow and see if they can help. So fed up and feel like he's being let down :(

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ThisYearUnderTheMistletoe · 15/11/2023 21:10

It is normally possible to ask fir a second opinion @sarx82
Maybe see your GP and ask them to refer you to another paediatrician?

MammaTo · 15/11/2023 21:14

We had the same referral but my little ones head wasn’t as big - his body and length was on 50th percentile and his head was 99th so he got referred, this happened at like 2-3 months old.
They measured mine and his dads head and was told we had “off the charts” size heads so they put it down to genetics.
The Dr said his development was fine and because he wasn’t an upset or whingy baby and no excessive vomiting (which can be a sign of fluid on the brain apparantly, just what she said).
She said the growth should tail off at 10-12 months and all balance out but if it continues to grow past age 1 to give her a call back.

sarx82 · 15/11/2023 21:14

@ThisYearUnderTheMistletoe yes i thought the same :( I asked today she said because it was an urgent referral she done for yesterday she can't do another urgent one as she can't by pass the paediatrician who saw us. She said she can only do a standard referral which could take up to 2 months. That's when she told me to go to the A&E department of the specialist hospital if I get no luck with the pals complaint. So fed up I don't understand how this can't be taken seriously by him.

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Milkmani · 15/11/2023 21:38

@sarx82 I don’t want to worry you but please keep pushing for referrals, scans etc if you are worried. A friends son had hydrocephalus and they were measuring his head, nagging the doctors and turning up at the A&E dept at the hospital until he was referred properly. If you are worried keep pushing, sometimes doctors don’t refer quickly enough. Keeping you in my thoughts, hope your little one is okay and just growing into himself.

sarx82 · 15/11/2023 21:40

@Milkmani thank you I will keep pushing. Did your friends son have any symptoms other than the head growth? We were referred by our GP but the paediatrician at our hospital won't give us a scan even though he thinks he has fluid around the brain. I'm so stressed out over it.

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snackprovidersupreme · 15/11/2023 21:55

If it helps, during covid they didn't even measure head size, so I think this can't be the only symptom they worry about. My DS1 has worn hats for 5year olds since he was 2 and his head is visibly much bigger than normal. But he is developing well and very healthy - he is now almost 4 and everything looks more in proportion.
DS2 is also very large headed but has been monitored more. I was told that as long as they are tracking the centile then that's great - DS2 is 98th ... so enormous, but consistently enormous!

OSU · 15/11/2023 22:09

My DD had and (has) a big head. Twice it was mentioned by a HV and a paediatrician. The first mentioned it in a inflammatory way and the second mentioned it randomly when DD had a bad vomiting bug in hospital at 18 months and me, at the end of my tether said 'so what do you want to do about it then?' And she said, nothing but go and see your GP. I ignored her as there were no other indicators. 11.5 years later, she still has a big head but the rest of her body is catching up and she's perfectly normal and totally gorgeous. The only thing she's ever needed is adult sized helmets for cycling and horse riding. I think she's 57cm now which I know is normal for an adult. I was in the military so randomly know average hat sizes. Most men are 58-60 cm and women 56-58cm.

Head circumference is also difficult to get right when measuring. I think DD's was 52 at the same age as your son.

Milkmani · 15/11/2023 22:23

@sarx82 I can’t imagine being in your position, I know the worry must be overwhelming. He had a large head circumference, fontanelle wasn’t quite settling and he had a couple of eye issues - all around 8 months onwards. Lots of children do just have big heads but now the seed had been sown in your mind by a health professional you won’t be able to shake it. Keep on at them, see if you can escalate to someone higher at the hospital. Wishing you all the best x

Sumerian · 15/11/2023 22:54

From what i remember (although it was a decade ago, and its all overshadowed by the fog of time and the feeling of stress back then) they didn't need to ct scan ds, he had an ultrasound because the soft spot (frontalles?) hadn't quite closed up so they could scan him that way.

Did paeds take any bloods? I would definitely push either gp or hospital to do a full blood workup including vit d.

OhBuggerandArse · 26/12/2023 10:53

@sarx82 I hope you've had more help and some better news by now - but just in case this might be relevant, I came across this report this morning:
https://twitter.com/Kidsdoc1Rick/status/1732909541996536139

https://twitter.com/Kidsdoc1Rick/status/1732909541996536139

nottaotter · 02/01/2024 23:18

@MammaTo what size are you and your DH heads?

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