A whole new meaning to high needs.

(68 Posts)
Kafri Sun 24-Feb-13 19:23:15

I have never yet met a baby as high needs as my ds.

I have tried absolute everything I can think of (and have had suggested by lovely MNers) and im making the phone call in the morning to book an appointment for cranial osteopathy.

he is a very unhappy little boy. he either screams all day or in the short periods he's not screaming, he's not far off it. he is almost never just a contented little baby.

he hates going out in the car or pram which makes going out no fun for either of us.

if he's enjoying play on his playmat with me, it's for a couple of minutes maximum and then the tears kick in and there's no comforting him.

he hates his swing seat, bouncy chair, playmat, play nest, being motionless. pretty much everything to be honest

please come and join me in my despair!

any suggestions welcome.

2BoysAndNoMore Tue 02-Apr-13 12:31:29

Both mine are/ were like this. DS1 was horrendous and hated his pram, highhair boucner chair. He was missively over sensitive and just grumpy. He grew into a spirited strong willed toddler but far more manageable than he was as a baby. By age 3 I would say he had just grown into himself and has been easy peasy ever since.

We often suspected reflux but gaviscon never helped and he wasn't inconsolable as such, just generally cranky and couldn't deal with the world well. We also tried cranial osteopathy but he was so unsettled and it didn't change anything.

He's 5 now and is a lovely little boy. No trouble at all. Basically he just hated being a baby and one he got walking and talking has been brilliant ever since.

DS2 is similar to how DS1 was. Very frustrating and hard work but so I feel for you but it will get better.

Kafri Mon 01-Apr-13 20:06:42

we're just starting on baby rice atm. only tried once so far but going to give some at his 1pm feed.
am I best giving it before/during or after his milk.

he has the starlight swing from m&p which he still cant stand. he has a bright stars bouncy chair which he'll sometimes tolerate while I make a feed up. what I don't under is why???
I have always sat him in the chair/carseat/pram etc so its not as if it's new to him.
the car especially is hit and miss now. some journeys good some bad. in some ways that's more difficult as its like pot luck whether I get a good or bad one...

im sure his feed and omeprazole are working as when he needs tge dose increasing he starts with the squealing overnight which he used to do before he was diagnosed.
he likes a bit of time on his back now but is just very quick to whine.
This sounds awful but it's very much like if he were an adult I woukd be telling him to get a bloody grip! its that kind of whiny if you get me?

wheredoistartmrs Mon 01-Apr-13 19:12:10

Mine was exactly the same, she didnt like anything, the pram , car, people, the swing, lying on her back. She is on pepti 1 too. She wakes between 5 and 15 times a night. Ditto everyone else's advice but I can say you will see a BIG improvement if you wean early.dont listen to the hv. Donit at 12 weeks, srart will stsrchy foods, avoid acidic foods like fruit. Oh and burb them after every
! feed really well.

BedHanger Mon 01-Apr-13 19:05:28

With my DS1, it took till about 16 weeks for him to stop with the constant crying, and even then he was pretty unsettled until six months. Wouldn't take a dummy, hated the pram, screamed in the car seat, swing, hammock, bouncy chair, everything. I was the mother who pitched up to antenatal group meetings in tears every time and wondered what I was doing wrong.

How many/what types of sling have you tried? It's worth persevering as they definitely have presences. We got on best with an Ergo and carried him everywhere for the first year because ut turned to be more convenient than a buggy.

He's now 2.5 and a happy, cheeky handful boy. I have a 4 week old DS2 who hardly cries at all and the contrast is stark - and has really brought home the fact that DS1's crying was nothing to do with my parenting. Some babies would really have preferred an extra trimester in the womb!

scampidoodle Mon 01-Apr-13 18:05:11

Sorry, realised my post might not have been particularly helpful. I was agreeing with earlier posts that routine could be helpful in your situation - don't worry about not getting out much, your baby (and you) getting enough rest and getting used to having decent naps is more important. Also, in a couple of months the timing and length of naps is likely to change anyway.

I am really convinced that lack of sleep exacerbates a lot of babies' problems (as you obviously know yourself). We didn't call it sleep training because it wasn't something we'd heard of at the time - just realised what worked for us, but we did have to put a lot of effort into getting DS to get to sleep at bedtime then at naptime and have decent naps in his cot. It was really worth it though and things did get a bit easier once we'd done that.

I know sleep/baby experts aren't popular on MN but I've been reading a lot of their advice to try and cope with DD and I've found it really useful to understand more about babies' sleep and think about what might work for her.

scampidoodle Mon 01-Apr-13 17:10:31

Hi,
How's it going now?
I didn't see your thread earlier but would probably have joined you in your distress if I had! My DD is only 9 weeks but until a week ago she was very unhappy most of the time she was awake. She's been on Nutramigen since 4 weeks and Ranitidine since 6 weeks and they only really both kicked in fully very recently. She's still bad in the evenings when we try to get her to sleep though.
DS was very like your son but we only discovered he had a milk allergy as well as the reflux when we started to give him solids (he was breastfed). I see your son's already on prescription formula though - how long has he been on it? Could he still be reacting to something in it?
We found with DS, even though he was obviously still suffering because we didn't know what was wrong with him, that getting him into a proper nap routine at about 4 months really helped - took a lot of hours of sitting by the cot and reassuring him but I think having regular sleeps at around the same time each day, an early bedtime and a routine did help. Before that he'd just slept in the car or in the pram if we went out for a walk. It also meant I had regular breaks and so could deal with the difficult times better.
He was a different baby once we got him onto solids and I wish I'd done it a bit earlier.
I understand how you must feel - I couldn't go anywhere with my son without him screaming at some point and we always had to come home early from baby groups - couldn't even go for a coffee as he'd be crying within minutes. Everyone (including childless young men) would be giving me advice and telling me he needed feeding/was too hot/too cold/uncomfortable. I felt like saying - no, this is just how he is!

Kafri Sat 30-Mar-13 19:27:19

Hi Guys - I'm back! (I'll apologise now)

DS is 14+2 now

right - ds had improved somewhat amazingly! Until weds. On Wed he literally wanted to eat all day. Had his usual 6x7oz by 4pm and still had his 7pm and 11pm feed though wasn't as desperate for those two.
Well, since then we have been right back at square 1, and I mean RIGHT BACK.

On tuesday, I got a lovely video of him laughing away at me which was fantastic - but he hasn't so much as smiled since - he's been too bust whining/crying/screaming.

Today has been the worst so far - he's been so unsettled all day - literally whining as soon as he finishes a feed or wakes from a nap. Is absolutely knackered but will not nap longer than 20/30 mins.

What the hell is going on???

I just feel so so so disheartened now.

Please advise...

Thanks xx

Kafri Fri 15-Mar-13 21:38:05

hi pacific - thanks for the advice (again). im all for honesty - remember I'm new to all this so all i have to go off is what people tell me and what research i can do. which isn't very much when he's being a little sod

anyway - there still seems to be an improvement of sorts. he will still nap in the day if we're at home so I've made sure i don't venture too far. car journeys are better in that not every single one is torture. je mixes it up a bit and has the odd good one then slaps me with an awful one when I least expect it

pram is still a no go so have just taken to carrying him places.

he doesnt scream as much as he was doing thankfully but is still very very quick to whine and whining can and does quickly escalate....

took him swimming today for the first time which he absolutely loved grin
have given the music/sensory stuff a miss for now - it really would be too much for him.

yes - im still smiling. think its a combination of how hard I worked to have him amd my stubbornness at nit letting things beat me! oh and it is so much easier to switch off to the screaming when he smiles so readily at me too.

Kafri, I just stumbled across this thread.
Glad to see you are still standing smile.

Do WHATEVER IT TAKES to get him to sleep - so if that tethers you at home for his nap times (in the short time) I'd go with that. Dark room and hoover app - go for it.

I'd be careful with music classes and baby sensory and similar. A HN baby is so easily overstimulated that they are better off without anything like that. I used to go to the local library's RhymeTime, mainly to get us out of the house, and I'd be the only sweating, stressed mother with a screaming baby. I am not sure what I was thinking: what baby wants to learn 'Row, row, row the boat'?? Or listen to 'Dear Zoo'? My now 3 year old is just barely beginning to be able to follow an actual story line; not just enjoy looking at pictures. I think a lot of these classes are overpriced nonsense and can be positively unhelpful to HN babies. Just my opinion; anybody who enjoys them should of course carry on, but I don't think that they are for every one or every baby at that stage in their deveopment.

DS1 used to also go from smiling to SCREAMING at the drop of a hat. His party trick was to go from being apparently fast asleep (angelic face, floppy limbs, slow breathing) to howling before he even opened his eyes. I do so feel for you.

Re weaning. Personally I'd not start early, mainly because IME it does not make any difference, sorry. And it might just do some harm in terms of gut maturity and future allergies/intolerances. I don't think that everybody MUST stick to 26 weeks/6 months rigidly (when I had DS1 10 years ago recommended weaning time was still 4 months), but I do think they need to be ready. I tried DS1 with babyrice aged 4 months and he did not have a clue what to do with it. His tongue thrust reflex was not gone yet and anything I gave him, he just pushed back out of his mouth again. I waited a monthh and at 5 months he quite happily gobbled baby rice/purees up. It did not make him overall more contented, mind.... Sorry.
Rusks are evil wink - sugary crap, really no need for them at all. IMO. But you did ask.

You are lucky to be blessed with a sunny disposition - glad to hear you still sounding strong x.

Kafri Fri 08-Mar-13 20:42:50

Touch wood we seem to have had a better couple of days. I seem to have managed to get him to nap in the day - the downside of it is that I have to be at home for it to happen.

Yesterday we were at home and after an hour/hour and half of being awake he was getting grouchy so put him in his cot with his app on (hoover noise) and he had a little snooze

Today, we nipped out to a local retail park and he screamed in the car again. So it seems that he will only nap in his cot with the curtains shut and his app going.

I'm going to have to keep taking him out though, he needs to get used to being in the car and being out and about.

The other thing is that I was supposed to take him to a music class today but decided against it. It was at 10.40 - well he gets tired and grouchy at 10.15 so thought if I forced him to stay up til the class he would be in meltdown and then wouldn't enjoy the class as he would be so overtired. Along with the fact that his feed is due at 11ish and I don't want to cock that up as his 3hourly seems to be working for us.

Sticking to a very rigid routine seems to be having a small effect on him so hopefully we'll carry on in this direction.

Am I causing myself problems by sticking so rigidly to a routine or should I be ok with it and keep doing what works??

Oh and how early can I think about introducing baby rice and possibly rusk in his milk. I only ask as his milk is very watery. It seems to fill him up in the sense of filling a jug with water but doesn't satisfy him for long as it were (a bit like McDonalds Vs an Indian - if I have Macs, i'm hungry a few hours later, if I have a curry i'm full for ages) Was thinking that some of the screaming might be solved once I can introduce something that might keep him satisfied for a bit longer???

MXP78 Fri 08-Mar-13 16:00:09

Kafri - I attempted Costa last week. I wore my coffee. SO embarrassing. I put it in the middle of the table but DD is so much bigger and stronger now she just lurched forward off my lap and got her fingers over the rim of the mug and pulled. She SCREAMED because it was hot and got on her arm and the whole thing went all over the table and me. I'm sure everyone was staring at me thinking what a bad mother I was. I just wanted to run home.

So Pamelat it's so nice hear your comments. Like Kafri I try not to compare and feel like I need to accept that she's just not like other babies so I can't do what other Mum's do but it's so hard. We just need to remember that this stage is going to be such a short stage of their lives and the traits that make them so difficult now are going to make them wonderful later on (intelligent, driven, confident etc). MUST THINK POSITIVE!

pamelat Thu 07-Mar-13 22:40:23

My sympathies

Dd was like this. It was hell.

She's now 5 and is adorable. She got better from 6 months.

I know how hard it is. Our second baby was a doodle compared to our first!!

We tried the cranial thing but it didn't work for us. He said she was too agitated!!!

The gp tried to say it was my fault for not being relaxed sad

It was awful

In hindsight she was overfed. I breastfed her on demand, which was constantly. She was born on 25percwntile and shot to 97 percentile!! On breast milk. I was exhausted and she just demanded

In hindsight she was over tired but I couldn't get her to sleep. One day I walked 10 miles just because shed dropped off and I didn't want to disturb her!

She also had mild silent reflux but gaviscon only helped a little. We tried formulas, drops, prescriptions . I feel for you

It passes and I believe it robe the sign of a highly sensitive butintelligwnt and caring little personsmile

My daughter is fabulous now

Kafri Thu 07-Mar-13 21:47:21

good luck ghostie hope it helps you. looking at our sessions I woukd say that it did make a difference but nothing miraculous if you get my drift. was nice to have a few nice days to recharge my batteries. not convinced it made enough difference to fork out £20 twice a week. might think differently once we get beyond 12w if nothing miraculous happens then wink

sunshine we tried CO - see above comments to ghostie. its so much harder having a baby like ds is. It's taken me a lot of effort still not quite sure I'm there yet to accept that he's like he is and quiet walks in the park/coffees with friends in costa etc are just not going to happen.
even when he's happy (it does happen from time to time) he's so quick to cry. literally with the click of a finger he'll go from smile to scream. it's utter madness. it wouldn't be so bad if he just cried and would be comforted but he SCREAMS and nothing brings him down.

He gets completely over stimulated by toys which also makes him scream. im looking at local swimming and sensory sessions but so far they're all booked up with a waiting list too.sad sad sad

SO MUCH HARDER THAN I EVER IMAGINED. He's just soooo high maintenance.

Sunshine200 Thu 07-Mar-13 20:51:48

Sounds just like my dd who had reflux. Great that your doctor has given omeprazole, keep going back to make sure the dosage goes up with his weight.
You could also try cranial osteopathy- it works for some.
I do feel for you, it's not what you imagine having a baby would be like - hang in there.

Ghostie Wed 06-Mar-13 18:19:22

Kafri, booked a co for tomorrow. Had a great day yesterday and thought she had shorted her guts out. Then today she has either been sleeping or crying! I realise I am lucky in that she does nap and sleeps well at night. But we're all sick, having the two and the crying, is just making me miserable. Not enjoying it hmm keep trying to find some glimmer of improvement or change to be more positive...just feeling wiped out and down! hmm

MXP78 Wed 06-Mar-13 10:54:13

I agree with everything MrsDonnieDarko says. I tried everything for my DD reflux meds, CO, sleeping in different positions, cutting out dairy, caffeine from my diet for BF and none of it helped. The only thing that seems to make her happy is growing up and becoming more able to do things, she just seems permanently frustrated. I think once she's moving she'll be happier and Hopefully content when she can talk. A while to go as she's 8mths and don't think she will crawl as hates being on her stomach. Screams and rolls as soon as I put her there. She is desperate to walk and always wants ti be on her feet. But the good news is it does get better. I can now take her in the car without her crying (as long as it's not too far) and she will go in he pushchair if I time it for when she's tired and she falls asleep. For the first 4 to 5 mths it was full screaming non stop for both those things. I remember my Mum said she would take her for a walk to the supermarket in the early days. Mum comes back screaming baby, no shopping. I said "welcome to my world"

On the sleep front it's great your LO sleeps at night. With regard to naps I think this gets easier as they get older and their tired signs become more apparent. I don't let my LOsleep past 5pm but that's because I put her to bed at 7pm. I need an evening to myself so don't like to make her bedtime later than that. But each to their own. I work it that she needs to be awake for at least 2hrs before going to bed for the night.

I know it's hard but like MrsDonnieDarko said, you just can't compare to other people's babies. Easy to say I know as I still catch myself doing it at 8mths!

Kafri Tue 05-Mar-13 23:22:56

im keeping everything crossed - people kerp saying to me 'difficult baby, easy child'. time will tell but ill be having words with them if he turns into anything less than an angel. and by angel I mean full on angel Gabriel standard! wink

spanky2 Tue 05-Mar-13 20:14:42

I have to tell you that Ds1 was a screamer as a baby . It was awful I thought I may go insane. But as a toddler he was lovely . He had screamed out his tantrums ! Something to look forward to.wink

JoEW Tue 05-Mar-13 14:24:54

Hi Kafri,

I really feel for you, it's so tough when you have a baby like this, I remember when my DS was in the early couple of months and I felt he was either asleep (on me) or screaming. Have you tried a Moby sling? This worked well for me, as long as I was walking. I walked A LOT.

I promise it gets easier, the first two to three months are the hardest and you're almost through that. Don't feel guilty, I bloody hated those early months and I now burst with love for my DS, we're so close - you will get there and this will seem a distant memory.

Reflux is hellish, we were also on Pepti and omeprazole and they were both helpful. I would also try using the carseat on the buggy wheels, instead of the pram. Have you tried that? As they are sitting up slightly it's more comfortable. I knew a lot of babies with reflux (we were prem and it's more common) and the carseat worked for all.

A wedge pillow (under the mattress) in the cot/basket at night is also really good.

MrsDonnieDarko Tue 05-Mar-13 13:40:59

Big sympathy from me. Both of my babies have been like this. It's so heart breaking, especially when you see other families out with peacefull happy gurgling babies while yours is screaming blue murder in the pram (I have been there!!).

You've had some great advice one here regarding reflux issues. I have nothing to add other than to offer you hope that it will get better.

For us we have taken both of ours to doctors, tried reflux meds, dairy free, feed less, feed more, cranial osteopathy, even got a referal to paediatrician at the hospital for DS2 because I was desperate to not go through it all again after the horror we had with DS1. Anyway, for us, it wasn't anything medical (as far as we know!). None of the above things we did made any difference although DS2 is still on milk free diet as is does seem to give him excema.

Anyway, DS1 is 5 now and after a year of hell (sorry, don't want to panic you, it may not be this long for you!) things finally started getting better. He basically just didn't like being a baby, his lack of understanding and language just seemed to frustrate him. He cried endlessly for no reason, hated sitting in high chair, car seat, pushchair etc, we just basically had to give up on any of the things we saw 'normal' babies doing and just carry DS around constantly. It was awful. He gradually mellowed when he got walking and massively improved by the time he could talk well at about 18 months. By2 he was easy peasy and never been a hard work toddler or child.

DS2 seems to be much the same. He's 14 months now and is frustrated at not being able to walk an talk. Just hoping he cheers up soon in the way his brother did!

Good luck. Try not to compare your life and your baby to others. This really is temporary. It really does get better.

Kafri Tue 05-Mar-13 08:18:32

im wondering if his milk/omeprazole is becoming ineffective - his squirming and wriggling is creeping back into each night now. sad

Dippy001 Mon 04-Mar-13 22:52:54

What sling are you using? The commercial ones are not supportive or comfortable for babies, www.facebook.com/photo.php?fbid=408839049180730&set=a.263258900405413.64028.246366758761294&type=1&theater.

My DS had reflux and I had to hold her upright all night so she slept. It was a hard time but with the right meds she was better. If your LO is so upset then I would go back to consultant and see if meds need to be adjusted. My DS was NEVER ever flat. In fact, when she did start to sleep by herself one end of the cot was on a chair, that's how much of a slope she needed.

girliefriend Mon 04-Mar-13 22:31:54

Hello Kafri, I remember being where you are now, it is such hard work. I used to look at other babies gurgling away happily and then look at my dd and wonder what I was doing wrong!!

I now have a 7yo so have just about come out the other side!!

My advice is to be consistant with some sort of routine in the day, as soon as I started to consistantly put dd down for naps at set times in the day things got eaiser.

Tips for helping naps in the day are making sure the room is really really dark, have a calming down time. I used to feed her in the darkened room, talk very quietly, strip off bottom half just leave top and nappy, pop down in cot (dd went into a baby sleeping bag) put soothing music on. To start with I sat near by and just gently stroked her face or tapped her back.

If she started to really kick off I would persevere for a bit but if she wasn't having any of it then that was o.kay I would admit defeat!

It took sometime but once dd got the hang of it she was better able to manage in the day and so was i

To this day dd is eaisly overtired and overstimulated. She is lovely but very sensitive and I think you just have to try and manage their worlds as best you can.

Kafri Mon 04-Mar-13 21:55:01

ghostie I honestly feel like i don't have a bloody clue what I'm doing! grin
gaviscon - watch out for constipation. some babies are fine - mine wasn't, which only added to our problems! !

a trip to Oz. now thats the one place on earth im DESPERATE to go to but hell would have to freeze over before i took ds on a flight that long just yet! lol.

CO - I really don't know just yet. had 1 session last tues which ds screamed through and took me ages to settle afterwards then took him back on Friday. he wasn't quite as unsettled for the second one. has it made a difference - er. ds does seem slightly better but it could be him getting older. I can't say I saw anything miraculous happening but it could well have played a part. I was dubious when the guy didn't charge me.... im gonna see how he goes on this next week as to whether I go back again. he charges 20 quid for kids ordinarily which is cheaper than a lot but is still quite a bit if I'm not convinced about it.

janey223 Mon 04-Mar-13 21:44:04

Or tired obviously!

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