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.

Another one who had a high needs DC1 and later diagnosed with ADHD ( aged 9).

I remember distinctly thinking I was a terrible mother as none of the usual parenting tips worked. It wasn’t until I had DS2 who actually napped and was so much more chilled that I realised it maybe wasn’t just me ( and understood how having a baby could be sort of enjoyable!).

I too had a high needs baby eventually diagnosed ASD (age 14).

Unmedicated reflux (I was repeatedly discouraged from trying medication - she was just finding her centile; ah no, struggling to meet 25th turned into 75th-90th once she was walking and food stayed where it was put). Reflux symptoms continued through childhood unbeknownst to me - only realised when she commented on the taste of acid reflux when ill age 11 or 12 "it hardly ever happens now mummy".

Talked early and wouldn't be quiet. Bribed her age 5 to attend a carol service if and only if she could sit through a normal one without talking (ended up a chorister a few years later, her request). As a toddler / preschooler she was very demanding of adult attention and help, noticed by her childminder for example.

Through school has both delighted and exasperated her teachers - she tells it how it is and can still be unintentionally rude. Academically very successful.

However, she's now away on a gap year, doing great, got a good university place lined up to come back to.

DS was very very easy by comparison. Probably also ASD but hasn't "needed" a diagnosis. Also academically brilliant.

One thing I look back on with both of them is that they were fussy about textures on weaning and probably took till age 2 for that to settle down a bit. Later we've observed sensory symptoms, and semi-vegetarian choices have been more about texture and aversion than anything else.

Wow, I'm overwhelmed by all these responses! Thank you so much for taking the time to share your experiences. Sorry I haven't replied to you all individually but I've been taking care of Mr High Needs and only have a hand free now he's in bed!

To answer some questions, we co-sleep and use white noise half the night and also when he's napping. I've tried feeding him or cuddling him back to sleep when he wakes from a nap but he's already wide awake and babbling so no chance. He'll only sleep for longer at the breast but after 8 months, it just wasn't practical for him to keep having naps on me.

I'm very strict with no dairy and check all packets but you've given me the idea to try no soya and no orange juice which I currently have with my iron supplement. The paediatrician said not to give him citrus fruits when weaning but it's worth a try for me to give the OJ up too. A food diary is a good idea.

The knowledge that he'll either get better some day or be diagnosed with something which explains all this is bizarrely comforting.

This thread has helped me so much. I'm going to re-read all your replies and take notes (I need to feel like I'm DOING something for my own sanity )

to everyone going through the same.

DS1, has diagnosis of ASD. Didn’t sleep through til age 3, impossible to wean (but eventually we succeeded), screamed all the time and wanted attention. He still wants attention constantly…
Only realised he was so high needs when had ds2.
I would speak to upyou health visitor as suspect plenty of difficult babies do not go on to have difficulties later on

Ds1 screamed, whimpered and cried from the day he was born until he calmed at 12 months but would barely sleep or rest unless on me or moving. He was a tiny baby under 5lbs at birth. I went back and forth to Hv & GP with a GP suggesting silent reflux At around 5 months and weaning would help yada, yada. Weaning was awful, vomiting, tears, didn’t sleep unless held or moving and I’ll be honest he was always upset, uncomfortable and I was a shell at my wits end. I tried massage, meds and many other types of advice but nothing changed. After moving we changed GP and they immediately suggested CMPA at 12 months and a gag reflex issue. I suspected CMPA but had limited success, with treatment life improved vastly. He went from a miserable, uncomfortable baby/toddler who didn’t sleep, was hungry and distressed by eating as it caused him to gag and vomit with treatment to a happier little fella. He finally slept through at 3 years old and now at 7 years is wonderful, sleeps from8pm-7pm, eats ok, independent and happy. although still has issues with food that stem from weaning and toddler years. I had 3 children after him and close together who didn’t have the difficulties he did (thankfully ).

This was my son. My GP/health visitors/now ExH spent 7 months telling me I was just whining /a rubbish mum.

Then he had an anaphylactic reaction.

Turned out he was allergic to lots of things including milk, soya, egg and wheat.

Not saying it is that, but definitely trust your instincts and keep exploring possible causes

Also, he transformed into a utterly delightful toddler and since then has been nothing but easy going and wonderful

My ds was high needs baby, reflux, eczema and cmpa. He cried all the time and barely slept. He was army crawling at 5m and walking at 10m but late to talk and limited show of emotion/interaction. I recognised the signs of asd and he was diagnosed at 3. He also has gdd as well as dairy , soya and nut allergies.

@SomethingWrong Yes unfortunately he was removed from oxygen supplementation without proper monitoring and this caused a hypoxic brain injury. It was remarkable that he went from screaming all day to smiling but I didn't question my good fortune,lol. Best of luck to you and your baby

DD1 was a high needs baby and had CMPA and reflux. Cried all the time. Around 12 months she started screaming at lights especially strip lighting and would refuse to touch touchy feely books. I remember saying how sensitive she was and wondering why things seemed to trigger her so much.
Diagnosed with autism just before her 4th birthday and also has sensory issues although she is generally happier and calmer than when she was a baby thankfully!

I want going to post, but as as so many others have...my high needs baby was eventually diagnosed with autism aged 13. He's very sensory sensitive but it took a while for me to figure out every thing was to fast, too tight, too loud or too bright for him. It took others even longer.

My high needs baby is also now diagnosed with autism!

He was a screamer, and so easily startled, and never settled from birth. Hated flourescent lights. Screamed non stop for 2 days when I moved a lamp in my bedroom Avoided eye contact from birth too. Nobody believed me so I gave up mentioning my concerns, but at 7 school raised their own concerns and at 8 he was diagnosed.

DS1 was v high maintenance. He was diagnosed with ADHD, SPD and he has some other autistic traits.
No2 was much lower maintenance (no obvious signs of sensory issues). Went on to be diagnosed autistic at 6. The sensory issues are now very apparent.
So yes a high needs baby may well turn out to have some additional needs but equally a seemingly easy baby can also be neurodivergent.
It was a relief in some way - finding out the struggle was very real and I wasn't just moaning about how difficult it was because I wasn't managing well. Both children are a delight in many many ways but just higher maintenance than your 'average' child.

When I read your op I immediately thought autism. I am part of a neurodevelopmental diagnostic team, and when I take neuro histories, what's described is either a high needs baby or the complete opposite. High needs babies don't sleep, can't be settled, reflux (other stomach/ gut issues), little babbling, no crawling, often hyper mobility. But some babies are the total opposite where the babies are strangely 'too good'. Very placid, no crying, good sleepers and eaters, not demanding in any way, in their own world. It's only when they get a bit older and don't hit social interaction and play milestones that things become more obvious.

Of course op, it may not be this and could be more diet or medical need. I hope things get easier.

It sounds like he's really uncomfortable and in pain which will be having a huge impact on his sleep. Sounds very draining for you! Did things improve when you started weaning? And is he on medication for reflux? Don't know if you're in the UK or not but if so check out Heidi Skudder (parent and baby coach) on Instagram, she specialises in reflux babies. Often if babies are gaining weight doctors are really bothered if they're still in pain or discomfort, and parents get fobbed off with they'll grow out of it etc etc

Mine were both high needs. They are autistic. It's very common for neurodiverse people to be high needs as babies.

@SomethingWrong

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

This was my DS. His first 14 months was a miserable existence and I was on my knees. He hated everything and cried, screamed and whinged constantly. Didn’t sleep, didn’t eat, hated the pram/sling/car seat, screamed to be picked up then screamed to be put down. I was certain there must be something ‘more’. Aside from the newborn period (which was a colicky, refluxy, none sleeping hell) months 9-14 were the absolute worse.

It was like a flick switched at 15 months. He learnt to walk and suddenly understood everything we were saying and started speaking back. Within the space of a month he became an utter delight. I still have to pinch myself it’s the same child. Still not exactly easy - does not tolerate being on his own at all and needs lots of reassurance and a permanent play mate. But he sleeps and eats well, rarely tantrums and spends all day giggling and is miles ahead with his language, having been delayed for so much of his first year milestones. Obviously things can change, but I’m currently absolutely certain he is neurotypical.

My friend's DS was like this. He has "mild", for want of a better term, cerebral palsy which was picked up quite late, plus a hernia. Once the hernia was repaired and he was helped and encouraged more to move, he did calm down a lot, although he's 5 now and still a sensitive little soul. His eyesight isn't good either, which his mum thinks didn't help. He loves his glasses.

Ds 1 was a nightmare. The midwives on SCBU taped a dummy to his mouth because he screamed constantly.

Er, what???

My 3rd was very high needs: I had a “pathologically” low PAPP-A when I was pregnant with him. This is a pregnancy associated protein linked to IUGR, pre eclampsia and poor blood flow through the umbilical cord leading to reduced placenta function. He was born at full term but SO scrawny! He cried constantly, didn’t sleep and lived in a sling. I had two older children and thought I had this parenting business nailed until I had him.

Like other babies mentioned here, he suddenly turned into a happy, smiley baby at about 8 months but OMG his tantrums as a toddler were epic! He’s 7 now and bright, funny, eats everything, sleeps well and is just lovely. He does have ADHD and some learning delay which may be due to the ADHD or of course down to all the disruption to education over the last couple of years.

I knew there was something “different” about him from the start. It took years to be listened to though

High needs, discovered oral allergy syndrome later on top of CMPA and soy allergy and tongue tie. So basically carrots and strawberries set him of with reflux/tummy pain and mouth itching/soreness. Obviously a little baby can't tell you that and most baby foods have carrot in!! Worth considering as we just knew there was something else.

Didn't sleep through until 3 and abit but also coincided with getting less sensitive to milk products. Screamed alllllllllll the time but now 4 and lovely/VERY intelligent and bossy! Some sensory issues with textures etc but that is absolutely resolving with time and confidence around food - all related to the negative feedback loop food used to give him eg food= pain.

He's only four so may be issues to come but doesn't seem like it now

My high needs baby basically ate, threw up, screamed and needed the sling and me walking to sleep. Never slept in the car seat, too noisy and bright. Clung to me and buried her head in my chest at baby groups. As a toddler and small child she hated socks and anything with a waistband. Needed absolute darkness and a cot to sleep, in a set routine. Became inconsolable if we tried to mess with her routine of naps and bedtime.

She’s 13, and she’s doing well in all aspects of her life. She’s at a selective school where she’s not particularly unusual in her interests, and she’s found other activities that work for her need for order and schedule. NT as far as I know!

My ds1 was a nightmare baby. Cried when put down, comfort fed all day and night until I began mixed feeding which helped a little. He was surgically attached to my breast and then hip until he was 2. I vividly remember DS strapped in his pram watching me every time I showered as he refused to stay with DH.

He had reflux and projectile vomited many times a day but I was told he would grow out of it and received no help from the GP. As a result he choked badly in his sleep once requiring urgent care. He also suffered from constipation which is an ongoing problem even now years later.

DS hit all his milestones for crawling, walking, speech and his height and weight were always within the average centile. He did however have issues with food very early on. Certain textures, foods touching one another, etc. Mealtimes were extremely challenging.

Like you, I had concerns that there was something that needed to be investigated. We had various issues crop up when he started nursery and school but nobody took me seriously for years. 12 years on ds1 has been diagnosed with ASD. It's only been a few months and it's taking him time to get his head round it, but it's been a huge struggle getting this far and I genuinely wept with relief when a referral was made. The assessments are very thorough and many questions were centred around the birth (his was very difficult and traumatic), and his early years. Make notes if it helps. I wish I had done because it was hard to remember everything really so many years later.

I should add it's hard to believe that DS1 is the same child that used to scream day and night and nearly gave me a MH breakdown. He's now the most amazing little guy - we have such a laugh and I call him my soulmate because he can read me like a book. Hes so empathic and caring. He also has a lovely relationship with his dad despite hating him in his early years

Wow I came to me to mention sleep apnea (my 2nd woke every hour or so until tonsils and adenoids out 3 and ahalf!)

However both my children were higher needs and match these descriptions . One is diagnosed autistic.... I didn't realise the link!!!