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.

Health visitor described my eldest as high needs. She didn’t sleep, had to be constantly held, cried relentlessly among other things. 10 years later she’s been diagnosed with autism

My cousin's baby was very high needs, screamed and writhed constantly and wouldn't sleep. She grew out of it as a toddler but always had stomach and food issues. She was diagnosed with Crohns at the age of 11.

Mine didn’t sleep, CMPA, eczema, reflux. Met all milestones early, spoke in sentences before the age of 2. Diagnosed with autism at 6. He’s 10 now. 😊

My ds was a high needs baby hospitalised many times from 4 months old due to severe reflux,cmpa and allergies he does have some complex medical issues but he’s now 7 and we believe the screaming may have been his extreme reaction to pain he still has he has a lot of sensory issues always has and we’re trying to get an asd assessment at this moment. As a baby he had to have an eeg and ecg as he was turning blue from screaming in hospital and they thought he was having seizures turned out he was just breath holding at 4 months old.

Im sharing my DDs story, not to scare you and make you think your DS might have the same, because the likelihood is vanishingly unlikely, but just to say that you should trust your instincts.

DD also had IUGR. She was on the bottom line of the growth chart for height and weight at birth and has always followed the lowest lines, more or less. She was a fussy baby, but as she was my first, I had nothing to compare her to. She would spend a full hour on each feed and it always seemed like hard work for her - she’d get really sweaty (I didn’t realise that babies could sweat that much!). She would throw up a lot, often quite a long time after her feed, and sometimes she seemed to choke on it. GP wasn’t very interested and dismissed it as colic or a touch of reflux or maybe teething, and I always came away feeling like a rubbish inexperienced mum who was overreacting.

When she was 3, we noticed a lump in her armpit. We’d moved house and had changed GP. New GP was excellent and sent her straight for scans etc after a week of antibiotics. Turned out she had neuroblastoma, probably there since birth or before. The problems she had a baby with feeding/reflux/fussiness were most likely caused by the large tumour in her abdomen.

She’s a teenager now and healthy. She has dyspraxia and possibly autism/adhd too - no way of knowing if those are caused by her cancer or treatment, or if she would have had them anyway (although I suspect the latter).

I’m really not trying to terrify you, op. NB or anything else sinister like that is extremely unlikely. Something like an allergy or intolerance is more possible, but equally difficult to get someone to investigate when all you have to go on are vague symptoms and a feeling that something isn’t quite right. Go back to your gp or paediatrician and make a nuisance of yourself. It might help to keep a diary (feeds/meals, timing and duration of fussing, nappies, if you bf then keep a food diary of what you eat, anything at all that might be related) to see if you can spot any patterns. If you feel like the doctors aren’t listening, ask to see someone else. If your health visitor is any good, ask her for help too. Basically, trust your instinct and don’t be fobbed off.

I have a high needs DS who is 18 months old. We found out at 10 months old he was severely allergic to our cats. A lot of his health issues improved after rehoming them. I then found out at 14 months he had an iron and zinc deficiency and his gut was very low in friendly bacteria. Explains a lot of his digestive problems.. struggling to get on top of this.

Whilst this information has been useful and I’ve seen improvements in his health, it has stop that he is still high needs. Recently he has started having complete meltdowns. Not tantrums, meltdowns. In looking for support to manage this I am continually seeing ADHD popping up. I haven’t actually looked into ADHD because he’s so young but I have ADHD and so do a lot for family members so I wouldn’t be surprised if it ends up being the case. He never sleeps which is a sign.

If your DS has any allergies and digestive issues these really won’t be helping. The medication manages the symptoms but doesn’t solve the issue. I would recommend taking him to a kinesiologist for an intolerance testing and to check his gut. They will pick anything and the NHS will never do the testing.

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!

Ditto with my dd. Duagnosed ASD aged 12. I Always had to carry her out of playgroups, friends, playgrounds screaming as she could never bear to leave. Refused every bottle I tried so was exclusively breastfed. Potty training vv stressful. Resorted to bribing with sweets. Various other things. She's a great teen now though

Yes. DC1 was a very poor sleeper, poor latch and seemed to hate breastfeeding, didn’t wean well and was extremely fussy about food / hardly ate, was extremely alert at all times and startled by loud noises, hated being held / being in the sling/ co-sleeping but screamed the house down if I put him down. I was an exhausted shell for the first years of his life.

Hit all his developmental milestones, though, and was a bright if absolutely CRAZILY energetic toddler and pre schooler. Diagnosed wuth high functioning autism and ADHD at 5 years old.

Wonderful 18 yr old now 🥰

@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

Mine was like this to the letter. Absolute nightmare baby and I hated it. I felt like I’d ruined my life. Then he hit around 17 or 18 months and suddenly became a dream child overnight. No terrible twos, no tantrums, his sleep improved (he still took another year and a half to sleep through the night after that but it became a bearable amount of night wakings), sunny, happy little boy. My theory is that he wanted to communicate and he couldn’t. As soon as he could talk enough to tell me things he was fine. It might not be the same for yours but high needs as a baby in all the ways you’ve mentioned doesn’t necessarily mean that there is a problem behind it.

Oh, and my parents say that I was the same as a baby - true nightmare baby, and I did a complete about turn at the same age that my son did, so I don’t think it was a one off for him.

If they present differently at home I find (when safe to do so obviously) that filming them can help

For us it was undiagnosed CMPA. Have you tried soya free too?

I did. He was 0th centile - i.e. lower weight than the centiles began at. He had extreme reflux and trouble holding food down. Never slept. Screamed non-stop. Took years and years to get a correct diagnosis beyond refluc. he has ASD (reflux and not sleeping and screaming all the time are all signs of ASD which I didn't know until he was diagnosed 12 years later! He also has ADHD and a spinal deformity which caused developmental delays to crawling and walking.

On the bright side, he's now late teens, at uni, has loads of friends, is on target for a first, but the undiagnosed illness took a real toll on him physically and he is still notably disabled.

Yep, high needs baby diagnosed autism at 7. My first so had no idea really but looking back the sleep issues, crying, sensitive to stimulation, needing a specific routine to sleep or go out - all makes sense now.

My DS was extremely high needs, just as you described in your list OP. Sleep didn't exist for a very long time, would only nap being held long beyond the fourth trimester. Everything seemed to make him scared and cry. Restless all the time. Plus bowel issues and delayed eating, hand-eye coordination and movement problems, delayed speaking and potty training. He was diagnosed with high functioning autism and anxiety aged around 6. Obviously not all high needs babies will be diagnosed, my DD initially appeared high needs and had many issues with milk and lactose allergies, but she's thankfully mostly grown out of those and has no diagnosis. I was very glad to get the diagnosis for DS. For years I was ignored and dismissed by HV, GP and so on, just told I was an over anxious first mother, exaggerating etc etc and I finally feel like everything I thought about my son's development has been validated and I'm finally listened to.

I had a preemie IUGR baby 0.3 centile so very tiny. Honestly the first year was the absolute hardest. We had colic/reflux and the dr kept pushing CMPA but my intuition was saying it wasn't it. We tried many different CMPA milk and it didn't make a jot of difference. Omeprazole also didn't do anything for us. We struggled through. I co-slept and just didn't put the pressure of a routine on us and just took one day at a time. I held him when he wanted and just survival mode was activated. For the first 4 months I honestly believe he screamed most of the day. After 4-5 months it gradually got better and when he started sitting up etc and improved. I believe as he was born so early he just needed to mature his gut etc etc. so time was the only healer. Basically with each milestone it got slightly better. Then we had a real turning point at 16/17mo which actually coincided with starting nursery. He slept through the whole night for the first time ever when he was 16mo. I could have cried. He still didn't do it very regularly until a few months later but having more sleep really makes things better. Now he's 2yo and such a lovely little thing. So smart and curious and funny. Still needs a lot of attention and has very regular whiny episodes but I believe its because he gets bored quickly as he has a lot of energy. But it's wildly different now and I can't believe we got through the torturous first year lol. But it does improve. Do you have people around to help? Perhaps even consider childcare?

Had one that was the opposite of many here - strangely low needs and subsequently diagnosed ASD/ADHD/GAD etc. They hardly ever slept from birth but didn’t cry. They would have had a few 10/15min catnaps during the day and that was it, slept a longer chunk right through of a night but by 2yo was only getting maybe 2-3hrs sleep per night and not even the 10/15min catnaps during the day. Was extremely rare they ever cried. Also happier not being held as they liked to be in a position they could constantly scan the room and you. They would look with great intent at everything including your face, they would have won a staring contest hands down. Was very freaky actually, it was very clear their mission was to observe and learn versus interacting with you as a baby normally would, that didn’t interest them at all. They are still a fascinating individual.

Oh yes, mine I described never crawled or had baby style movements. They refused to roll over or move much from laying, just went to sitting. No crawling of any type then just went straight to walking. Was extremely late to walking but when they did it was spot on, was a slow start as muscles/strength hadn’t developed due to lack of movement but their brain figured it out rather than their body by trial and error if that makes sense.

Similar with speech, not a babbler/talker at all but late starter and then started from a more advanced base when they did start.

Ds 1 was a nightmare. The midwives on SCBU taped a dummy to his mouth because he screamed constantly. One even said I was a better woman than she was if he didn't send me over the edge because he was relentless and had the loudest cry. As a child and adult he is the most laid back person I've ever known so thankfully didn't live up to his premise of being difficult and demanding (He got easier aged about four)
Ds3 was another screamer, almost as bad as ds1or maybe he was as bad but I coped better. Diagnosed with ASD at 2 and a half.

My DS was extremely high needs. Cried non-stop for the first 18 months of his life! He’s still a very intense and sensitive character now at almost 4, but is much easier than he was. I think he just didn’t like being a baby! He hasn’t been diagnosed with anything so far and nursery etc have no concerns with his development.

DC1 was 'high needs'. She still is really, she's nearly 4 and definitely 'spirited'. She has come on loads though and can be great fun to be around, but my God she is intense! She is suspected to be asthmatic, and she has eczema and hayfever, but no other concerns about her health. Her growth did stagnate a bit but seems to have got back on track recently. She's around the 20th centile for height and weight which was roughly where she was born. I think it's just her personality type...takes after me basically!

@Firebird83

My DS was extremely high needs. Cried non-stop for the first 18 months of his life! He’s still a very intense and sensitive character now at almost 4, but is much easier than he was. I think he just didn’t like being a baby! He hasn’t been diagnosed with anything so far and nursery etc have no concerns with his development.

He sounds like my DD! Yes mine is at nursery too and they love her, no concerns there. Like your child she's just intense and sensitive. But so am I to be honest.

He could also just be in a pattern of being very overtired if he is waking so frequently.

Yes some are right he could also be autistic but you won’t know this until later in life.

What have you tried to link his sleep for longer than 30 mins? Have you used white noise when he naps? Contact naps at all, leading to longer sleep cycles…?

It might be worth investing in a sleep specialist course to help you out.

Pm me if you like

My nephew. Poor sleeper, fussy. SIL took him to the GP's for 'sensitive hearing' as a toddler.
He has ASD.

Wheat intolerance- dunno if was connected but very high need baby!