Anyone had a high needs baby then later found out it was something else?

[SomethingWrong]

Just that really.

My 9-month-old extremely high needs DS has already been diagnosed with reflux and CMPA which are both managed. He appears to be hitting all his milestones.

He was an IUGR baby who is on 0.4th percentile for height and weight.

He is under paediatrician care but they don't live with him so don't see how bad he is.

If anything he seems to be getting worse as the months go by which I didn't think possible!

I can't shake the feeling that there is something else causing him to be like he is.

I'd appreciate anyone sharing experiences of any conditions that, looking back, explain why your DC appeared high needs.

Mine had reflux and lactose intolerance until he was 5. Age 6 was diagnosed with migraines. Aged 9 was diagnosed with ADHD, dyspraxia and anxiety disorder.

Thats explained pretty much the migraines, high needs and awful sleep as well as hyperactivity and over emotional reactions.

Once on ADHD meds his migraines disappeared.

Good luck. They're difficult babies but also so rewarding! He is a very fun and energetic person to be around despite some hard times.

My friend's baby had similar issues. Then they discovered (about 4 months I think) that he had congenital diaphragmatic hernia and had a few ops for that. Then they found out it was a chromosome deletion. He has toileting and mild learning issues but is doing really well.

What are his ‘high needs’ and what do you mean by ‘he seems to be getting worse’? You’ve said he’s hitting all his milestones, which presumably is why his paediatrician isn’t concerned. It’s unclear what exactly you’re worried about.

Yes,my son; but his development was being closely monitored for problems after having a stroke in NiCU as a preemie due to medical neglect. He screamed all the time and only wanted to be carried upright and looking over our shoulders. He always wanted to see what was going on around him which he couldn't do cradled. He'd scream all day except for naps BUT at eight months he woke up one day happy and smiley! It was as if a switch was hit. He was a changed child. BTW he has cerebral palsy due to the stroke. My sister was very colicky and a difficult child and has two personality disorders. She was a full term baby.

Thanks to those who have replied so far.

@Soontobe60 by "high needs" I mean that he is extremely demanding. He:

*Spends most of his waking hours crying and/or whining.
*Hates being put down so must be held almost constantly, but even then he squirms, headbutts, throws himself backwards, etc.
*Has issues sleeping. He wakes crying roughly every hour, every night and must be fed back to sleep. Naps no more than 30 mins at a time. I'm on my knees.
*Is very sensitive and unpredictable (a sudden noise will have him hysterically crying).

By "getting worse" I mean that he is even more demanding and miserable than a few months ago

@EKGEMS a stroke? That must have been an awful time for you! I'm so glad he just suddenly got better one day! That's my hope but with every month that passes I feel less convinced that that will happen and more worried that he might have something we're all missing

Yes DD1 was high needs.

She had silent reflux. She wanted held 24-7 and screamed 24-7 until 7 months old when we got medication and weight dosed painkillers.

She was diagnosed as autistic at 6 years old.

Looking back it was obvious from day 1. She was very distressed with transitions - wake/sleep, car seat/picked up, pram/picked up, cot/picked up, pyjamas/clothes and the reverse of these. She also had massive sensory processing issues - nappies, clothes, food, milk, etc.

She was my first so I had no idea what normal was like. Once I had DD2, I was staggered. I kept checking she was breathing because she slept for up to 2 hours in one nap!

I totally sympathise as I had a very difficult second baby who had CMPA and reflux.
Any lack of sleep will make behavioural or physical issues way worse. I know you are feeding to sleep which will make him reliant on that and unable to link up cycles. I would try extremely gentle sleep training to see if you can get longer naps and better duration of sleep at night. That might make some of the other issues less bad

My DS1 was a very high needs baby. In fact I went to the drs with a lists to show how many hours a day he cried and how little he slept. He had to be held all the time otherwise he cried, although he fed very well and gained huge amounts of weight (he was ebf). Once he was a year old I realised he didn't seem to hear properly, eventually it was confirmed he had glue ear which was severely affecting his hearing, and so that was put down for the reason he wasn't hitting all his milestones. He had grommets put in at 2 and then he behaviour became even worse. He got very distressed at loud noises and being around other people. I was told this was because he wasn't used to having to process noise and it would get better once he learnt to filter out background noises.

In the meantime I had DS2, who was also a high needs baby in many ways due to an illness he was born with, but in other ways like a pp said I couldn't get over how easy he was to look after in other ways, and he napped during the daytime! It made us realise that DS1's behaviour wasn't normal.

After a bit of pushing DS1 was finally diagnosed with autism when he was 10, although we suspected it from the age of 5 when DS2 started overtaking DS1 with some developmental milestones.

So I would say I have had 2 high needs babies, who had different needs. 1 did turn out to have a permanent reason for his high needs. The other one did had a good reason for his high needs, but luckily he got better and life got a lot easier with him when he hit about 2. Although he is now 13 and a pain in the bum teenager! Whereas DS1 has been no more difficult as a teenager than he has his whole life.

I couldn't not answer OP because I felt exactly the same as you around that age. Mine is only 18 months now but the first year roughly was horrendous - she was so demanding and unpredictable. Other babies would happily sit in their prams at cafes while mine would scream unless I took her out, then she'd wriggle and writhe about. It made me not want to leave the house. She had reflux but it calmed down a lot as she got older. What changed for us was when she started crawling and subsequently walking. She was so much happier, and is now a very contented (albeit spirited...) toddler. It's much much better and looking back I think she just hated being a baby and was frustrated. She would scream for hours of the day and she was extremely clingy, but it has got better. I hope it does for you too.

One of the mums from my baby group had a very difficult baby. She was like a stressed out zombie from him. It was like he was hyper from day one. She said what really stuck in her head was the day after he was born she was still in hospital and all other newborns were snuggled up asleep but her baby was screaming. He started crawling at about 7 months and was literally racing around the place by 10 months. He was diagnosed with autism at four. However in saying all that my lovely quiet smiley and placid baby is also autistic.

My CMPA baby was just like this.
How careful are you being with this?
My child is now 14 and cannot tolerate anything that says may contain milk. She has also been diagnosed as celiac so even with stringent controls and checks she still has reactions.

Yes lactose intolerance after colic
Now being assessed for adhd girl age 12

My DS was high needs and just was told time and time again he had 'colic' and use infacol
we then found he was lactose intolerant
As he was fully breastfed they always dismissed any allergies, but lactose travels through breast milk, it was only until we started giving him cups of milk that we put 2 and 2 together and he is loads better

You're exactly describing my lad. He's 3 now and the reflux seems to have gone,, he does eat a range but is on 0.4th centile still. He's now a high needs toddler and I still haven't found an underlying cause Tbh. He doesn't sleep well, he's irritable, clingy (he can be delightful when he wants and is very sharp) but seems such hard work next to other kids his age. I've always suspected he's just hungry, I think there still may be some gut issue's but I guess I won't really know till he's older. Sorry I'm not much help but I hope you figure it out xxx

@stargirl1701 What you say about transitions sounds very familiar to me. In my case, I had the "normal" DC first so my DS2 has been quite a shock to the system to say the least!

@LapinR0se You're absolutely right. Unfortunately, we've already tried gentle sleep training but he screams the house down to the point of nearly being sick even with the most gentle of methods.

DS was. We used to comment that he'd cry if his feet pointed the wrong way. Developmental delay including sitting. Later diagnosed with ASD. We also joke that he came out screaming and has never stopped.

Dd2 was lying on the bed at a few hours old and lifted her head up and over. She never slept, breastfed constantly and was generally just quite full on. She is now 10 and still full on. Gives me more stress then her 16 year old sister. She just has a very fiery personality..

Yes, it was horrendous. High needs baby from birth, and I was stressed and worried. Her language was poor, she would have melt downs constantly, her sleep was terrible and waking 3/4 times a night, just eternally a nightmare. I tried 3 different doctors, HV, SALT, nothing was working.

At 2 years they finally scanned her tummy (after 2 years of me pushing), and checked her anal passage, and she had small cuts throughout her bowel. 2 weeks on Movicol, and she was a different child, honestly, it was like a different child had walked in to my house.

She's 3 now, and we are still on Movicol and will probably be on it until school. She is amazing! So bright, sleeps well, her language is where it should be, no meltdowns and is a pleasure to be around.

My son was a high needs baby/young child, crying/emotional sensitive, he's now 8 and has been diagnosed with ADHD. I would say it's far too early to tell and you will have to see how things pan out.

I would suggest you read The Highly Sensitive Child book by Elaine N Anon. I read it earlier this year and there were some baby specific pages of advice I wished I'd had when he was younger. For me, he was the 'odd one out' compared to all my friends' children of the same age - ALWAYS crying and needing to be held. I think it's quite hard to know what to do for the best and getting the support you need.

Yes , sorry to say .

My DD had severe reflux and CMP allergy lots of related gastro issues. Was a tricky baby. Struggled to sleep, delayed milestones etc etc.
At 3 ish she was diagnosed with a genetic condition, has learning difficulties is dyspraxic and is likely to be autistic. Despite all this she is now a fiesty determined 10 year old.
I have a friend whose child was very similar to our DD early on and she is fine so it's very difficult to tell.

My eldest child was a pretty bad sleeper and also got very unsettled with transitions. Has been referred for ASD and also has dyslexia and is gifted. I think she is hypermobile too.

Youngest was a horrific sleeper and screams a lot even now age 5. Has been referred for assessment, I think. Likely she is ASD/ or SPD, also hypermobile and I thinkmay have some health impacts with this too(eg POTS, which I also have)
Good luck OP it’s exhausting xx

If he is hitting his milestones I wouldn't worry though , my son wasn't and screamed the place down !
Have you checked his eyesight and hearing? My son along with other stuff had Dvm which meant he couldn't see much so I think a lot of it was fear !

My high needs baby was later diagnosed with autism, and looking back some of the mystery crying was probably sensory issues he couldn't tell me about at the time. But, lots of people have high needs babies who grow out of it and are fine. If you have concerns raise them with either your health visitor or child's nursery (if they attend)

My DS was also an IUGR baby and on same percentile as your DS. He was a truly exhausting baby, woke hourly for feeds until he was about 10 months, wouldn't nap, wouldn't be put down to sleep. Never seemed to settle.

He was walking well at 9 months and had very good speech early too. He was an extremely fussy eater, breastfed until 18 month and really didn't accept solids for a very long time.

Diagnosed with autism at 9. Still a very fussy eater and still underweight and smallest in his class, but not worryingly so.

He's a wonderful, smart, funny, loving boy.

If I could go back and do anything differently when he was a baby, I would have co-slept sooner and stopped battling trying to get him into his own bed.