5 yr old constantly tired

[SoullessButSunny]

My 5 yr old DS has been complaining of being tired for months.

He was referred in June to the ENT because our gp thought his tonsils may be the cause.

He doesn't suffer from tonsillitis but has large tonsils and the gp thinks they maybe obstructing his airway at night so he's not getting proper sleep.

His hospital appointment took a long time to come through. In the meantime I took him back to gp and they said 'Wait and see what hospital say'.

We finally saw the ENT consultant last month and he's referred DS for a sleep study to see what his oxygen levels are at night. We may not get the sleep study appointment this year, even though I've agreed to take a cancelled appointment at short notice.

Do you think I should take DS back to the gp and ask them to start investigating other causes of this tiredness?

I'm worried that its been going on for so long and what if its not his tonsils but something more serious that he's not getting treatment for?

I'd like to ask them to test him for anemia, viruses (especially Glandular Fever) and anything else that causes this severe tiredness.

Any other ideas?

TIA

If it were me, yes I would be going back to the GP and asking for other tests.

We had this with ds1 at roughly the same age. He was really tired and complained of pins and needles a lot, as well as sore joints.

I realised that he was having periods of apnoea when he was asleep after watching him one evening. He also was having gastric problems which made him feel under the weather.

After much digging, I discovered that this was all linked to the fact that he had (up until then, undiagnosed) tongue tie and a high palate. The high palate can restrict the opening into the post nasal apertures (the beginning of the airway) causing apnoea as well as the tongue lying in the incorrect position, sometimes restricting the airway.

I don't think the apnoea was severe enough for a diagnosis (it has to be x number of episodes per hour and a blood oxygen level below x amount) but it was certainly enough to impact on his wellbeing.

Not long after, his mouth took a big growth spurt to accommodate his adult teeth. A gap appeared between his first and second incisors, and the growth was presumably enough to open up the post nasal appertures because the apnoea stopped.

We had his tongue tie revised and the gastric troubles stopped and he's undergoing orthodontic treatment now to widen his palate and draw out the middle section of his face, opening up his nostrils in the process. He has stopped mouth breathing now.

He is a completely different child. Full of beans and strong as an ox.

I hope you find some answers

Oh sorry, forgot a bit!!

I thought DS1 had large tonsils, but I was wrong.

When he opened his mouth, I could see the whole of his tonsils without having to depress his tongue. This was because the back of his tongue was tied down (posterior tongue tie). Once the tie was revised, I could no longer see his tonsils as the tongue sat much higher up at the back of his mouth, and the doc would now need to use a depressor.

They should run some bloods I think. It could be something simple like Anaemia, or he could be B12 deficient (pernicious anaemia), Diabetes needs to be ruled out, as does thyroid problems. I would push for a blood test tbh. My dd had one at 5, and it was fine, if that helps!

Thank you for your reply mawbroon.

That's really interesting about the tongue tie because my brother and dad both had it.

I too can see the whole of his tonsils. With my DS you can see right into his throat. When he laughs you can see his epiglottis which you can't see with my other DC.

I will certainly raise tongue tie with the GP.

DS doesn't mouth breathe in the day but he does snore at night, thrashes around a lot in his sleep, sweats a lot at night (Dr said this may be because he's working hard to breathe or could just be normal for DS) and dribbles.

Would the ENT consultant not have noticed a tongue tie in DS? He did look in his mouth.

hellymelly Thanks for your reply. I'm keen for them to run bloods too. My DD had one at 3 and it was fine. I'm putting diabetes, anemia and B12 on the list.

Managed to get DS an appointment for today - that's a small miracle in itself!

This is where it gets difficult.

Mainstream docs and dentists know bugger all about tongue tie. I would include ENTs in that too. I was poo pooed left right and centre by all the medics that ds1 encountered and ended up going privately to a dentist who had taken a specialist interest.

You need an expert. Where are you based?

We're in the South East.

Another thing DS does is he gags a lot on his food and normally splutters with his first mouthful of drink.

He's not allowed to talk whilst eating and has to sit still etc so its not because he's not concentrating.

Did your DS do that too mawbroon?

He gagged on certain textures when he was a toddler, but he totally avoids them now (he's 8btw)

He used to swallow his food without much chewing which didn't help the digestive problems. He would also eat a little bit and then say he was full. He probably was full, but a lot of it would have been air. He was terribly bloated by the end of the day. He was ok with drinks.

I would suggest that you look up Dr Malcolm Levinkind in East Finchley. He is a paed dentist and did some training on tongue ties with Dr Kotlow who is a leading expert. He uses laser and does not use GA.

I think tongue tie should be looked into. If you google posterior tongue tie images you may be able to recognise the look of it.
If other family members have had it, I'd imagine he's probably got a higher chance of having it.

What about coeliac? If he is anaemic, that could be the cause... There also a link with diabetes and thyroid so worth testing if any of those come up as positive.

Has he lost weight? Does he have a big tummy but slim elsewhere? Rashes?

Should have asked - is he thirsty?

As the being really sleepy thing is quite recent- try and think about what else has changed wrt his behaviour, appetite, thirst, health, as there may be important clues you need to raise with your GP.

Hi all,

Sorry, I've been away for the weekend.

I took DS to the GP. I tried to get persuade the Dr to do a blood test to look for the list of illnesses we'd thought about but he was having none of it. He kept saying 'Let's wait and see what the sleep study shows'.

The GP then confirmed that we wouldn't get the sleep study appointment until at least new year.

I explained that DS was first referred in June so that would be at least 6 months since he first started complaining of this tiredness.

He didn't seem bothered. I feel like I'm banging my head against a brick wall.

The GP did suggest that I contact the secretary of the ENT Dr and 'exaggerate' how tired DS is and that he's falling asleep at school etc.

I asked his teacher if she would mind me saying this to the secretary and she said she didn't mind because to be honest he is pretty much falling asleep at school come days.

The GP printed me off a letter from the ENT to the GP and it says that DS has;

No mouth breathing
Examination of the neck revealed bilateral jugulodigastric lymphadenopathy
Otoscopy was normal bilaterally
Good sniff in both nostrils
Throat showed grade 2 tonsils

mawbroon My DS doesn't seem to suffer from any tummy problems. Thank you for the info re Dr Levinkind. I will look into it.

Raw No, he doesn't seem to be thirsty at all. His behaviour has got quite bad at home - tantrums, raging etc but that fits with him being tired. After he's calmed down he then says that he's just so tired.

He's good as gold at school though (checked with teacher).

I googled the tongue tie images and he doesn't look like that at all.

Thanks

Most of the tongue tie images when you Google are of anterior tongue ties. These are the obvious ones.

Posterior tongue ties are much more difficult to spot. DS1 could stick his tongue out really far, lift it to the roof of his mouth easily and he had no heart shape or trouble with his speech.

His was still a significant tie, despite all the above.

mawbroon Even when I type 'posterior' tt images it still shows anterior ones which is why I thought DS didn't have it.

I'm going to email Dr Levinkind tonight and ask if he will see DS. Thank you for all your help.

I hope that didn't sound snippy about the images, I meant that google shows up anterior tongue tie even when you've asked for images of the posterior ones!!

Gosh, no didn't read that as snippy at all! Yes, even when you type "posterior tongue tie", most of the images that come up are of anterior ones, which really is not helpful!!

I have heard nothing but praise for Dr L, so hopefully he can help!