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.

Mystery crying as a baby was extreme distress about sensory triggers he couldn't verbalise and was diagnosed with autism at 8. So glad we abandoned sleep training so quickly as it was actually torture for him with so many things distressing him to just be left.

My son was a very fussy eater and poor sleeper - he ended up on lactose free nutragmin formula at 9 months and reflux meds and didn't sleep through the night until he was 4.5 years old. diagnosed with borderline ASD at 5.
BUT two thing I did which was life changing - find a cranial oestopath who has training in babies. Babies necks get compressed during birth process - my son was c section but he still had issues. You will notice a difference after one session.
Second google infant reflexes or primitive reflexes not going dormant - we did the brushing technique associated with it and when my son went back for his final ASD assessment at 11...he was diagnosed Neurotypical. It was recognised he use to have ASD traits but they were gone and they classified him as 'slow to warm up'.
My fussy stressy baby is now one chilled out teen.

Ds2 was an horrific baby for sleeping. He liked to br rocked and we had a swing which was our saving grace, and upright so held on his feet as much as possible. Once he could stay upright in the baby walker he became happier.
He also had sleep area which improved when his tonsils and adenoids were removed.
He's now 20, one of the most amazing people person that I know and I feel truly blessed to know him.

I see my DS in so many of these posts.

It's interesting how many of you have mentioned ASD. DS is obviously far too young to know but I must admit it is something that I have considered especially as I am currently seeking a diagnosis for myself.

I really appreciate you telling me about your lovely DC

Yes, both my high needs babu have autism.

My high needs baby has inattentive adhd, dyslexia, anxiety and just waiting on the asd diagnosis (now 12…like others I was listened to late).

He spoke early but flat out refused solids until a year old and used to wake every 45 minutes. Spent six months not wearing socks because they all felt wrong.

Ds2 was a high needs baby. Ds1 had been a dream but ds2 hit me like a freight train. Screamed blue murder if he wasn't held. He was born 4 weeks early and we were both ill with infections which meant he needed to spend some time in SCBU. I was told he'd be there a minimum of 24 hours, probably longer. He was actually handed back to me after about 18 hours as he was "responding well to medication" and also because he screamed the place down the entire time he was there. I often joke he was kicked out for bad behaviour!
I had to cuddle him to sleep until he was three. He threw up multiple times a day until about a year old. At about that time the real hell started. He'd have a nap - always on his schedule, I had to wait until he practically fell asleep on his feet, then wake up screaming. Proper high pitched, ear drum melting scream. It would go on for a minimum of half an hour, usually close to one hour and occasionally longer. Nothing I could do would help. He wouldn't let me even touch him, never mind a cuddle. Didn't want toys, wouldn't even be bribed with a biscuit. Putting his favourite TV shows on actually made it worse. Eventually he'd slowly wind down. If the neighbours had called social services on me I wouldn't have been surprised as he sounded like he was being tortured.
He was slow to talk. At 18 months he only ever said "Da". I took him to see a health visitor but they weren't fussed. By two he did have a small lexicon of words, but many were unclear and he was showing no signs of sentences. However, we had one appointment with SALT and it's like a switch flipped in his head and in about a week he was talking in sentences.
He refused to potty train. I'd had several abortive attempts that all ended up in him screaming that he wanted his nappy.
Then DH took him and his big brother on a camping trip. I stayed at home because... well I needed a break! They came back in the early evening and when I told my children it was bed time, ds2 said ok, put his pyjamas on and went to bed! I did not have to cuddle him for half an hour! The following day he said "I want to use the potty today." I was stunned. He got it in less than a week.
School has been much the same. He fought all the way through reception year and into year one. Refused to do anything.
Then something in his head clicked and he went from refusing to read to devouring books.
His current teacher (year 3) says that he's never had a student that has gone from having almost unreadable handwriting to one of the neatest in the space of three weeks.

When he was in preschool (again he hated hated hated it until suddenly he loved it) we noticed he'd developed a squint. Getting a beyond stubborn three year old to sit still to have his eyes tested was hard but they discovered several myelinated nerve fibres in his retina which means his vision wasn't too good in that eye. He also has astigmatism. Glasses have helped, when he hasn't been destroying them.
I do still wonder if he might just be on the autistic spectrum. However as he's got older I've worried less and less.

Yes, ADHD. I nearly cracked up, the baby years were so hard.

Autism diagnosis as a teen.

@CeratopsofthePharoahs oh my goodness, that sounds so, so hard!

Yes DS traumatised me as a baby he had reflux, colic, abdominal hernia, wouldn’t settled, constantly rocking.
He was extremely inpatient, stopping his buggy at a crossroads for a moment he'd scream murder, go from zero to a zillion in under a minute.
He constantly made a humming sound.

I didn't bond for a long time.

His sensory issues got worse over time and eventually he was diagnosed with autism and spd.

Now his needs are met he has become a lovely little boy aged 7.

Speak to the health visitor.

Yes I did , high needed from the point of severe reflux and screaming for hours . No one believed how bad it was as I was managing to keep her wait up using a dropper to give her milk . We found out a year later she had Rett syndrome and can still neither walk , talk , eat , use her hands or do any other single thing. Obviously mine was a very rare scenario so don't panic , however I would advise you trust your instincts as I had health professionals saying I was an over anxious first time mum . If only

Weight

My son was a perfect baby from ages 0-6 months, slept through the night pretty much straight away and was just a contented little bundle of joy.

Weaned and everything continued well. Then at 8 months old we went on holiday to Spain and he broke. Turned into what you've described as a high needs baby, seemingly overnight. I thought it was the heat or he was ill, but nothing improved when we got home. Went to paediatrician appointments etc over the course of the next 6-9 months and nothing helped. Paediatrician was completely blinkered by family history of other conditions, and didn't know what to do when those tests came back negative.

Finally saw a dietician who suggested dairy as the culprit. Paediatrician had previously told me this was impossible as he'd been fine as a breastfed baby while I guzzled milk and chocolate all day. But it turns out, Spanish baby food is basically made of cream and it completely wrecked his gut.

He's 3.5 now and has just progressed up the milk ladder to be able to finally tolerate some dairy in his diet again. Almost 2 years later. But in time for some Easter chocolate, hooray!

Reading this back I feel like a shitty parent for not spotting such an obvious solution for so long.

Autism. Also, she was a shoulder dystocia birth and when she was old enough to talk she had vivid memories of her shoulder hurting when she was little.

Yes my son, silent reflux and hes 11 months old.

I was a high needs baby - wouldn't sleep, couldn't be put down. I'm autistic.

Lots of people saying autism

There is a recent study that shows evidence that autism begins in infancy. The study was able to detect changes in the amygdala in infants 6-12 months who later went on to develop autism. The study talks about how the changes in the amygdala could be due to the stress these babies are experiencing due to their autism. Here's a link: www.nih.gov/news-events/news-releases/amygdala-overgrowth-occurs-autism-spectrum-disorder-may-begin-during-infancy

My dc is high needs. There wasn't so much sleep problems as he would fall asleep and only wake up for comfort feeds/hunger feeds quite often even at 3. But he was demanding, intense and exhausting as he was never happy. People would think how smiley and happy he was. But towards me, I think he hated me. He had this constant sad puppy eyes, would whinge and moan, never happy with anything and always demanded attention. He was born needing antibiotics as a precaution and I think that messed up with his gut as he was a very colicky, windy baby as well. I know a few people with children that had this temperament but no underlying issue or just grew out with it.

[quote Potatoesdonthavefaces]Lots of people saying autism

There is a recent study that shows evidence that autism begins in infancy. The study was able to detect changes in the amygdala in infants 6-12 months who later went on to develop autism. The study talks about how the changes in the amygdala could be due to the stress these babies are experiencing due to their autism. Here's a link: www.nih.gov/news-events/news-releases/amygdala-overgrowth-occurs-autism-spectrum-disorder-may-begin-during-infancy[/quote]
Thanks for sharing.

On the other hand, most of the parents I know who have a child or teenager with ASD say that their child was a dream baby who slept well, could be left to play or sit happily in a bouncer, very portable etc and that the issues started somewhere between 12-18 months. So high needs baby doesn’t necessarily mean autism. It certainly didn’t for mine - he was just, for whatever reason, a nightmare baby.

Autism is something that we're born with. It's genetic. There's a theory that the natural process of neural pruning happens to a lesser extent in autistic people so we have more connections in our brains. That explains why we are more bothered by stimuli and get more easily overwhelmed. A lot of the neural pruning happens in the first years of life so differences would gradually become apparent.

There is nothing to say that the OP's child is autistic. She asked the question and we answered. The baby may very well have an allergy or grow out of whatever is going on.

My dd1 was high needs. I was made out to be "an anxious first time mum" and my own depression/anxiety was used against me when I sought help. I breastfed her so it wasn't until weaning that we discovered that she had dairy, egg and peanut allergies (all of which were regularly in my diet). She was still not quite 'normal', I've spent my career working with children so I knew something was off but couldn't place my finger on it. Her first nursery and later childminder agreed that something was going on but also weren't sure. After a colleague of mine who knows her well enough suggested it, she's now waiting to be diagnosed with adhd, and at the first appointment with the paediatrician she suggested that dd1 is autistic as well. She's 5 and a half.

Hi OP, the fact that your DS is meeting his milestones in really positive. Also, being under paeds already is good as if anything else comes up you're already 'in the system'.

My DD (4 in a few days) was really colicky, she would scream constantly from 7pm and it would usually last until midnight but often longer, it was very tough. She was constantly puking too. She wriggled around constantly, in my tummy and when she was born. She would have screaming meltdowns at 8 months old if another baby had a toy she wanted. If a friend came round to play she would (attempt!) to hide all her toys from them, this was again at 8 months onwards, so very young to be so fixated. Now she is developmentally delayed (didn't walk consistently till 32 months) and either has autism and/or a language disorder. She had a really bad terrible twos but is a lot easier now, speech constantly improves, has grown out a lot of the things like struggling with transitions, she is very sweet and quirky.

My second daughter was like this. She had CMPI (and still does) although we didn’t realise at the time. I was breastfeeding and didn’t restrict dairy and I do wonder if she’d have been easier if I had.

I have 4 DC who are academically capable and do very well at school but she’s my smartest. Her siblings are above average and motivated but she’s definitely more than that. When she was two she could count to 100 and tell the time. She’s planning a career in astrophysics. She needs to exercise a lot and swims competitively but she doesn’t have ADHD or autism. She is a moody, grouchy, demanding teen girl though but not abnormally so.