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Children's health

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Original poster

Waiting for a referral to a paediatrician, but in the meantime…

20 replies

Waitingforpaeds · 02/10/2023 17:08

Any ideas what could be happening with my nine year old? He has changed in the last year. I don’t know what’s going on. It’s a mix of mysterious symptoms. The GP didn’t suggest anything, but said he’d refer us to a paediatrician, that was a month ago and I haven’t had anything.

Here’s what DS and I wrote down half together, and half things that I didn’t tell him I was writing down that I’ve observed!

-waking at 3am every night for no reason (he says)
-is over the top tired in the morning (perhaps because of the above!)
-finding school “overwhelming” and, he says, like “my brain isn’t working properly. We do easy maths but I can’t even do 3+7 sometimes” (He is excellent at maths generally, and is/was an excellent student too). He said: “I feel like my brain is full is static. My brain doesn’t know anything sometimes.”
-He’s often listless and has lost his joyful edge.
-craves sugar and sweets all the time - probably because he’s often tired.
-gained a little weight. His body type is very slim, but now has a belly for the first time in his life (well, since babyhood!).

I’m sure it’s all a bit vague, but I’m so worried about him and not sure what to do while we wait! Or even what to think.

He is taking a good quality multivitamin with iron and b12 and omega 3, so I think he’s sorted there.

I can’t help but think about things like Lyme disease as he had a few tick bites last summer! I don’t know what else to think.

OP posts:

Are your children’s vaccines up to date?

Set a reminder

nocoolnamesleft · 02/10/2023 21:12

If he's genuinely slim but pot bellied, and has brain fog, has he had a coeliac screening blood test done?

Original poster

Waitingforpaeds · 02/10/2023 21:21

nocoolnamesleft · 02/10/2023 21:12

If he's genuinely slim but pot bellied, and has brain fog, has he had a coeliac screening blood test done?

He hasn’t - that’s a good idea! He’s not stick-thin with a pot belly, but is generally slim with a tummy which looks completely normal - but isn’t his usual body shape.

But it’s only in the last year he’s felt this way and has eaten a lot of gluten in his life. Can it come on like that all of a sudden?

OP posts:

HairyKitty · 02/10/2023 21:24

Mild chronic fatigue syndrome or mild long covid?

HairyKitty · 02/10/2023 21:25

Affects sleep, fatigue, brain fog, activity levels, mood, weight

Notcookie · 02/10/2023 21:26

Your GP can do a Lyme disease test, you don't need to wait for a referral. I would also ask for a full blood count, anaemia and coeliac screening.

coloursquare · 02/10/2023 21:27

Diabetes seems obvious thing to rule out - have they tested him?

PragmaticWench · 02/10/2023 21:28

Don't cut out gluten from his diet, coeliac blood tests need you to be eating gluten to be accurate.

Original poster

Waitingforpaeds · 02/10/2023 21:28

HairyKitty · 02/10/2023 21:24

Mild chronic fatigue syndrome or mild long covid?

He did have covid (for the first and only time) last year! Maybe a stupid question, but does long covid “go”? Or is it something chronic?

OP posts:

Original poster

Waitingforpaeds · 02/10/2023 21:31

Notcookie · 02/10/2023 21:26

Your GP can do a Lyme disease test, you don't need to wait for a referral. I would also ask for a full blood count, anaemia and coeliac screening.

Our gp is rubbish. We requested a Lyme test and they said the hospital won’t do it! We said we need one and some other screening, which is when he said he’d refer me to a paediatrician.

It’s really difficult as a stranger would think he’s ok maybe. Just a quiet and withdrawn child, perhaps. But I know he’s different.

OP posts:

Original poster

Waitingforpaeds · 02/10/2023 21:32

coloursquare · 02/10/2023 21:27

Diabetes seems obvious thing to rule out - have they tested him?

No - they only did blood tests for his vitamin levels, which were ok (presumably because he takes Multis). It took forever to get those, which is why we’ve asked for more and other things.

But thank you - I will add this to the list definitely!

OP posts:

Notcookie · 02/10/2023 21:37

Can you change GP? I've found I've had to push for most tests but as long as they agree there is a clinical need they will do them. I don't understand why they couldn't get the Lyme test done. Its not good to not be able to have faith in your GP. Not just for now but in the future.

HairyKitty · 02/10/2023 21:47

@Waitingforpaeds long covid generally seems to be chronic with some people recovering somewhat after quite a long time.
Long covid (fatigue type) and cfs/m.e. are pretty much the same thing.

Archymum · 02/10/2023 21:51

Sounds like long Covid.

Selenium · 02/10/2023 21:51

I would also suggest thyroid function tests to rule out hypothyroidism.

violetcuriosity · 02/10/2023 21:53

Look into pandas x

Rainallnight · 02/10/2023 22:09

I agree with PP’s suggestions that you should look into changing GP. There are lots of investigations they could have carried out instead of referring you to languish on a waiting list.

Songbird74 · 03/10/2023 07:21

Op, I was going to suggest coeliac screen. Both my two are coeliac and my son had what they thought were silent seizures, but he just felt like his brain wasn’t working (he had brain fog which is a recognised symptom of coeliac). My DD was very short for her age, tired, achey and very headachey. To find out it was coeliac and not anything like the C-word was a huge relief. Has your GP done bloods at all to check his iron / gluten levels? I thought that would’ve been a starting point.

Original poster

Waitingforpaeds · 03/10/2023 07:44

This is all great! I have a list of what to ask for. Thank you so much. I felt completely clueless as to what it might be or what tests to even request apart from Lyme!

When people suggest change GP, do they mean change surgery or the individual GP?

OP posts:

Original poster

Waitingforpaeds · 03/10/2023 07:46

Songbird74 · 03/10/2023 07:21

Interestingly my DS is also short for his age…

I’m not sure if his iron levels were checked. I assume so, in the vitamin blood tests he had done. But they didn’t tell us what they were, or give us the results, just said they were “fine”.

I don’t think he’s had his gluten levels checked, and he hasn’t been tested for coeliac.

OP posts:

SardineSarnie · 03/10/2023 09:19

If he wakes at 3am every day like clockwork, have you checked for outside noise eg a neighbour who is a shift worker with a loud car, or a regular flight overhead? This used to happen to me (and I was shattered) and it turned out it was a new plane overhead. We ended up moving house in the end because the lack of sleep was having such an impact on my health. If it's outside noise maybe he would tolerate earplugs or could you switch bedrooms around to see if that helps?

Most of the things on your list (including weight if he's suddenly snacking on high calorie snacks because he's so tired, and brain fog because he's not well rested) could be the result of poor sleep.

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