Gut feeling that something isn't right: 8mo, reflux, huge head, no sleep

[peasizedbladder]

Our 8 mo DS2 has always been unsettled, there is always something wrong with him, he is always ill. My gut feel is something isn't right, GP thinks it is 'just him'. In desperate need of sleep. Am I being paranoid? What should we do next?

Sorry this is long....

He has been diagnosed with silent reflux (on Gavison). He is a big baby (95th centile) with a HUGE head (2cm over the 99.6th centile). Formula fed. He can be very happy - but often very unsettled. Bad sleeper since 5 months old, always something that wakes him: teething, tonsilitis, antibiotics causing diarrhea/night time hunger in just the last 3 weeks, and now he has a cold. Weaning initially caused very bad sleep. About once every 2 weeks he will be ok and sleep through. GP and HV won't refer me to local sleep clinic advising instead co-sleeping or cry it out (small trials of which just leave him in a terrible state so I won't do)

Last night as an example: self settled to sleep at 7pm; woke at 12pm (milk then back to cot) then again at 3am (more milk, calprofen), then unsettled all night despite me giving up and having him in bed with me. No obvious cause other than a mild cold, he seemed to be trying to sleep, just unable to.

We have paid to see a paed (who we have since found out is 'old school') who thinks he needs lots of stimulation and be left to cry it out at night. He thinks it is behavoural stemming from a hospital admission at 8 weeks (possible meningitis which was then ruled out) unsettling him. The paed spotted his huge head - so far this has been put down to a family trait but we are waiting to follow it up with the GP to check if it is getting any bigger.

This doesn't seem normal to me and v different from easy going DS1. Am I being paranoid? I keep optimistically thinking 'once we are over x it will be fine' - but it never is as the next illness/issue is upon us within days.

Options seem to be:

• insist on referal to a different paed (we can't afford to pay privately again)
  
• take him to a cranial osteapth to check his head
  
• keep on going to the GP for every illness
  
• get him into a sleep clinic/sleep consultant (although my gut feel is that health issues are causing the sleep issue so would this help?)
  
  Any advice / suggestions / similar experience welcomed, getting increasingly isolated/tired/desperate! Thanks for reading my ramblings...

[llareggub]

Well, I've no idea re the head, but my DS2 is 19 months and hasn't slept through yet. I keep telling myself that he will, one day.

You get used to it. Easier to go with the flow that force it, I think.

Are cranial oestopaths any good then? I thought that was all mumbo jumbo and a Waste Of Money. But what do I know? I have the world's worst sleeping toddler!

Nothing you've described seems odd, btw. I think you must have been lucky with DS1. But do trust your instinct, I don't know your DS, obviously.

[werewolf]

Well, re the size - could he not just be a big baby with a big appetite, so he is hungry perhaps more than you think he will be?

Are you tall as a family?

[Blackletterday]

Is his head growing along a curve? I'm assuming so since the hp's seem dismissive. My lot have big bonce's too, they did dd's measurement at the 8 month check and looked a bit , then looked at me and dh and went "aah" . 2cm above the 99th percentile does seem quite big, but in the scheme of things 2 cm isn't a lot, plus the rest of him is pretty large too. My dc's head growth has slowed down a lot as they get older, they don't look odd.

As for the rest of it par for the course I'm afraid. My ds2 who is 13 months, had a couple of months of sleeping through, then around 9 months started waking regularly.

Lately it's been, teething, cold, jabs, thirsty, cold, wants a cuddle. Take your ruddy pick.

It doesn't really bother me that much as dp is brilliant with night wakings, plus most of his waking is before 2 am and I'm a bit of a night owl.

I have only ever used cio once, with dd(at my Mums, refused to sleep, battle of wills really, all other avenues exhausted). Worked in the end, but distressing and wouldn't use it for regular sleep problems.

[earwicga]

I have twins and one slept and one didn't. Very unsettled baby for the first year and I think was a lot to do with surgery at 3 days old. Think it was basic stress now, looking back on it.

I've since found about cranial osteopathy for babies - If I had known about it then I would of definately have gone for it. Make sure you shop around and get a v experienced one who is well refered.

You are entitled to get a referal to a different paediatrician as well, so I would also do that.

[Blackletterday]

I don't think a cranial osteopath is qualified to diagnose anything about heads btw. I'm not actually sure what they do (seems like snakeoil expensive baby massage to me)

[earwicga]

I should say I am not one for 'snakeoil' type stuff either, but after reading about CO it seemed good and something my baby would of benefited from.

[peasizedbladder]

Thanks for all your posts.

llareggub, your right it is easier to accept on days I go with the flow re lack of sleep and dont stress about it, although after several nights of only 4 hours broken sleep I find that tricky!

As for CO, I did give it a go when he was about 10 weeks old, for the reflux, with no conclusive results. We have now been recommended by many people another cranial osteaopath locally so it may be worth a punt... I've just given her a call to find out more.

His head was only measured at birth (about the 95th centile then) and then again at 7 months so we can't see a trend yet. My GP won't remeasure it until the 6 weeks recommended by the paed, and the HV clearly did it wrong when she tried (wonky tape, smaller measurement, couldnt plot it on the graph, grrr).

We are not v tall, I'm only 5'2" and my OH is 5'10" but braod shouldered and we both have big heads!

He can certainly eat! And I try to feed him often to cut down the night time waking, but it doesn't seem to make much difference.

earwicga, its very interesting to hear your experience following early hospital treatment, perhaps there is something in it.

i just want my poor baby to have a decent start in life!

[larrygrylls]

Peasize,

Infant Gaviscon is not really the treatment for silent reflux. It is only a "food stabiliser" (makes the food denser so less likely to come up) and contains no antacid so will do nothing for the pain. The treatment is normally ranitadine and sometimes domperidone. They need to be prescribed by a paediatrician.

As for the large head, our son, at the worst of his reflux was on the 0.4th centile for weight but his head was on the 95th centile. It can be normal to have a large head but the paediatrician we saw wanted to rule out other thing (swelling, fluid etc). Luckily, he was normal. Did the paediatrician you saw do any tests re his large head? Why did he have suspected meningitis; could the two be in any way related?

[peasizedbladder]

larrygrylls, thanks for the info. Wow 0.4th centile and 95th must of been concerning. We tried ranitidine when he was about 4 months and it caused severe diarrhea so we had to come off it. The GP told us then to 'cold turkey' all medication and hope the reflux had resolved itself. Gradually his sleeping become worse and worse, obviously in pain, so we went back on the Gaviscon and things improved. They have since got worse again. I don't know if this current restlessness/unable to sleep is again reflux, or one of the other things he seems to be getting. The paed we saw called silent reflux the 'new colic' and a 'fashionable diagnosis' when no cause can be found. He didnt think we would see anything if we did tests etc so just said keep on the Gaviscon if it helps.

No one (paed, GP, HV) has suggeted any tests/investigations regarding his head, just to monitor the size of it for now. I am worried that his head size and or reflux are more significant that any of the health professionals think.

He had suspected meningitis as he had a temp of over 38 C with no apparent cause (no chest/ear infection etc etc). As he was so young we were rushed into hospital for every test going and he was subjected to lumber puncture and intravenous antibiotics for several days. All the results came back negative so it was put down to a virus.

[larrygrylls]

Ok, right,

Yeah, he was a skinny little thing at his thinnest. Fine now, though. We regard him as getting a little chubby as he is probably about the 10th centile.Most reflux self resolves as soon as they can keep themselves upright.

I think that if the paediatrician has noted his head and has no immediate concerns, he may well just be going through "one of those phases". On the other hand, if you as a parent are concerned, you can always ask for a referral and try for a second opinion.

[Igglystuffedfullofturkey]

He could have a cows milk protein allergy which usually goes hand in hand with reflux. Have you tried him on dairy?

Keep a food diary - I had to do this when weaning DS (he's got dairy and soya intolerances plus is sensitive to acidic fruits and gets windy very very easily which keeps him up at night). Try and keep big meals for lunchtime, small meals at tea with a small snack in the afternoon.

I would push for another reflux meds TBH. The rantidine might have given your DS diarrhea if the dose was too high. The reflux didn't resolve itself once DS could sit up. Yes it got better but it didn't go away (interestingly my FIL has acid reflux - triggered by wheat). It only went away once I knew what to cut out of his diet.

Does he sleep on his front? This can be more comfy for reflux babies and put his cot on an angle too.

To be honest though, a lot of this could just be developmental and his sleep will get better. DS was a terrible sleeper until 9 months old. He's 14 months and has gone backwards a bit with illness but I can get more than 4 hours in a row now.

I can't help about the head!

[peasizedbladder]

Thanks Iggly. Yes he sleeps on his front and his cot is at an angle. He slept much better for the first five months when he was in a hammock (raised head end) but is now too big to go in it and wants to be able to roll over.
I keep thinking of trying a food diary, and will now get on with doing one. There are some nights he seems quite windy. I hadnt really considered food allergies but will look out for them.
Off to see the GP again tomorrow, will ask then about other meds.
Keeping my fingers crossed we only have to get to 9 months to get some sleep!

[Igglystuffedfullofturkey]

I hope it gets better for you!

Re windy nights - I can't give DS any green veg (peas, broccoli), anything related to onions (leeks) or eggs after lunch. Otherwise he's up all night. A sip of peppermint tea can help him get some wind out if I give it before bed.