Chronically tired 3.5 year old

[Triffid14]

Hello
writing this as a last resort really hoping someone out there has some experience/insight that can help us.

my 3.5 year old DD has been chronically tired since she could walk (around 12 months).

There were lots of struggles with sleep and napping so we put her tiredness down to that, however, those issues are largely gone now. She does not nap but generally asleep by 7.30 and wakes around 6.30am. A couple of nights per week she will struggle to fall asleep and can take up to 1.5 hours to drop off. This is often after a nursery day when she is overtired. She will still wake at the same time next day. Amount of sleep does not affect her tiredness.

She is usually rubbing her eyes and starting to look exhausted a couple of hours after waking and that’s her like that for the day. It affects behaviour and what we are able to do with her.

we have had a sleep apnea study done which is normal. We have been referred to a paediatrician who did bloods and said all normal, iron was slightly under so advised to take over the counter iron which we have done with no change. he didn’t think iron was low enough to warrant a prescription of iron.

Behaviour: struggles to listen when out doing activities, stands out from other children in groups we have tried due to not following instructions or listening. Can be impulsive. But this is mostly when we are out and about. Wanders off all the time. Seems completely spaced out at times.

Smart girl. Very socially smart. Largely sociable and friendly with other children and makes eye contact, expresses her emotions well. Was slightly speech delayed but catching up.

Any one got a clue what’s going on with my kid?

Thank you

Thank you everyone. Just knowing that other kids have experienced the same makes me feel less alone in this. I’m definitely going to ask for some proper iron prescription.
@hEDS I would never have considered this but I think it is worth looking into. She used to complain of joint pain a lot when she was smaller.

Might be worth looking into if she has a number of symptoms (not everyone has all of them). My daughter also used to complain of joint pain/growing pains. As she got older she would regularly have sprains and soft tissue damage during PE. The only thing I would stress is to consult a specialist if you can afford an initial consultation (you won’t necessarily need to see them again). Most doctors are not familiar with it or they think it needs to be extreme symptoms.

It may not be the same thing but it is massively under diagnosed and I would hate for your daughter to go through what mine has (before being diagnosed).

Definitely try prescription iron though. That might well solve it. ☺️

Re dairy allergy:

Joint pain (!)
Tummy ache
Constant urge to wee - sometimes like cystitis and all night.
Emotional
Tired, so tired, fall asleep on the way home from school tired.
Unable to engage with school at all - noticeably up and down

She was better within 24h of cutting it out and it all comes back if she eats dairy. It is the non anaphylactic allergy

This is so interesting! Definitely something I want to discuss when we see the dietician as I’m convinced my son has some form of malabsorption or allergy

Hi @Triffid14 I know this is an old thread but just wondering if you have gotten any answers re your DDs tiredness. I could have written your post word for word about my DD. She does have CMPA but still so tired all the time. Have a GP appt on Thursday so really hoping we can get some answers..

Hi
Nor really no!
we have an iron prescription from GP but too early to see if any difference.
we also pushed for a referral to neurology.
One paediatrician told me some kids are just like this! And that she would struggle with school. Not great news.
so at the minute we will keep going with the iron for a few months and if we don’t see a difference we may investigate behaviour things like ADHD as she does show a lot of those tendencies.
Hope you get some answers too! It’s difficult when you don’t know what’s going on.

Hi @Triffid14 I wondered if you'd gotten to the bottom of things? My DD, 3.5 is exactly the same. We have a Dr's appointment coming up and I'm not sure what areas to ask about (other than iron and vitamin deficiency testing). Many thanks!

Hi there
Im the OP.
We had further tests for coliac but that was negative. She has started school now and we are looking likely that she will be diagnosed with ADHD as one of the previous posters suggested.
If it gives you any hope the energy levels have improved as she’s got older and she isn’t as tired all the time anymore although the other issues I mentioned have persisted.

Hi OP.

We had something like this and fixed it by giving DS 150g readybrek made into biscuits every day.

Just to add to this:

-She did turn out to have a dairy intolerance, particularly to cheese
-no deficiency was found except slightly low in iron but supplements and prescribed iron did not have an impact
-she was tested for sleep apnea, celiac disease, and other deficiencies but all was normal
-Her tiredness has definitely improved but the inability to follow instructions, being in her own world, energy dips etc all continued and have been raised by school
-paediatrician has said likely ADHD so I’m guessing that the sleep issues were probably caused by that and led to the extreme tiredness

Thanks for sharing your update, and great her energy issues have improved

I just wanted to add a further update for those who find this thread :

DD is nearly 6 now. She is able to sustain a full day at school and after school care easily and the extreme tiredness is largely gone.

looking back on my original post I can see how little sleep she was getting for her age and this must have impacted her massively. The power of hindsight.

Her refusal and inability to sleep was always a huge issue and she was prescribed melatonin which has helped enormously. She can now get a 12 hour sleep and this obviously helps with her moods in the day.

Another belated update - my DS was also found to have a dairy allergy! Energy levels are so better since going dairy free and we are now slowly working up the ladder.

@Triffid14 thanks for the update! Out of interest, how much sleep was she getting?

I reckon she was getting about 10 hours. It wasn’t enough for her.

Bear in mind that she dropped naps from the age of 2 and also probably needed about 12 hours sleep due to her neurodivergence (she’s picked up as severe concentration issues in class already).

I am glad those days are over though! She still takes ages to fall asleep but she’s more independent so can be left in her room to look at books in her bed or listen to a story till she drops off.

we also use melatonin on school days when she is really struggling and she falls asleep within 20 mins (norm is 1.5-2 hours).

Thanks @Triffid14 . I ask because my daughter only ever sleeps for around 10 hours (her max was 11hrs total sleep per 24 hrs, even as a tiny baby). She never really gets tired (she doesn't do tired, just gets more active the longer she's up), but of course I have no idea what she'd be like with more sleep because it's never happened!

How difficult was it to get melatonin?

If she’s not tired then maybe that is ok? Though worth asking a dr if you are concerned.

We were prescribed through the paediatrician that was overseeing us on the neurodevelopmental pathway. We were referred to that age 4 through the health visitor. Not just because of sleep though, there were lots of other issues.

Is it just the sleep concerning you?

Hello, I know this thread is old but does anyone have any updates? I feel like we need help. My child is really struggling.

I have a 4 year old daughter and my goodness @Triffid14 our daughter has been tired since being a baby really. About 20% of the time she’s okay/managing but the other 70-80% time she’s chronically tired. Her sleep does not refresh her and in the more tired times she does not get as much sleep as she should as she’s too tired to be relaxed and wind down easily to sleep. It can take hours at night sometimes. She fights it. She dropped naps at 2 and has NEVER EVER fallen asleep watching tv or just on the sofa or anything close. She finds it hard to even relax on us. Other people don’t see it - as all she seems is wired - we know it’s chronic & cumulative fatigue. Nursery pick up on it though.

We have a very good and consistent sleep/bed routine. Low lighting. No tv 2+hrs before bed (she only watches limited tv anyway), bath with epsom salts, magnesium foot cream, pjs, story, cuddle etc.

Sometimes a few hours after getting up she’s already v tired (we can see on her face she’s tired first thing though from her look and demeanour). She’s very dark under the eyes too and just always looks so tired and just not bright and well.

Also had a sleep study.
Blood results looked good, no coeliac.

Iron ferritin levels at 15 or 17 so low - but I don’t feel this is the real root of issue, although we have been upping iron. The tiredness also impacts her behaviour and what we can do with her. In the fatigued times we’d struggle to go for a full family day out. We’ve been known to have to cut a visit short and just come home at 11.30. We don’t do overly stimulating things. It affects her engagement at nursery. The other 20% of the time she seems much better and we then think oh ‘shes’s okay now’ but we’ve been in these cycles too many times for the 20% okay time to feel anything is fixed.

My daughter also stands out from other children in groups and struggles to listen and follow instructions despite being very bright.

I accept ADHD may play a part here but I still don’t think it’s the full picture.

She’s starting school in September and I can see it’s going to be a struggle as things are for her. This must be awful for her, poor little girl struggling through the days like this.

Any help woule be appreciated so much @Triffid14 @Rahrahrahraah @Lemonademoney @Mamantraileuse @Allthatjazz234 @demotedreally @hEDS @DipperandMabel

@Atty81can I ask how old your DD is? Is she 4, 4.5 or near to 5?

@TinyMouseTheatre She was 4 early January but we’ve found this since being a baby. She attends pre-school p/t 12hrs - 15 hours a week and they too notice the difference in her 70-80% time looking / seating so tired and 20% managing a bit better. I feel she’s always lacking resource now

I am so sorry to hear your daughter is struggling. It’s so hard to find out what is causing it but hopefully the previous posts will give you a few ideas of where to start in terms of working out what is happening. For my child I think the cause was illness and copious antibiotics as a baby and we’ve had to slowly build him back up from that. His gut biome was probably non existent at one point and he was hospitalised a few times with breathing issues after viral infections, it felt like he just didn’t absorb anything from his food and he was constipated with low ferretin despite a varied diet. He couldn’t get a decent level of sleep and was often laying there drenched in sweat, I caught him sleep walking a few times too when he was really poorly which was frightening and I was convinced there was something seriously wrong with him.

My DS is now in Year 4 and doing so much better. Tiredness has completely abated now and he happily does a full day at school then trots off to after school clubs twice a week. I’d say he’s still a bit small but not crazily so and he’s definitely got more colour in his cheeks. Dairy free helped him hugely and he is still 90% dairy free although he does tolerate occasional pizza. He’s also been prescribed antihistamines and a Seretide inhaler as he is a wheezer and suffers from hayfever, again both have really helped him and I’m optimistic he will outgrow the asthma as his health generally has improved so much.

It has taken a very very long time and it’s felt like we’ve looked at everything over the past three years to get to this stage. I still give him a daily liquid multivitamin which contains iron and fish oils after his evening meal. I don’t know if they help or not but at this point I’m trying to maintain his health as much as I can.