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Worried about 7yo, things seem to he getting worse. Advice please

41 replies

LaraWearsZara · 17/12/2022 10:37

I've posted a few times recently. 7 yesr old DS always been very fit and healthy.
Around 3 months ago he had a grey patch of hair appear on his head which has now developed into loads of white strands all over. They've ruled out poliosis or vitiligo and we are awaiting dermatology apt.
In the last 6 weeks or so things have changed. He has been complaining of sudden sharp headaches and stabbing pains in his eye. These episodes last no more than 15-30 seconds but make him feel faint and dizzy. Sometimes they're accompanied by numb legs and hands and severe heart palpitations.
We had an emergency opticians apt last week which showed absolutely no sign for concern so we went to the gp and she's referred him for a wide variety of bloods to be taken at the children's hospital but his apt is not till Jan 9th.
Fast forward to this morning - he has wet himself twice in 90 mins. He's totally fine in himself but has both times just stood there in a state of disbelief that he's suddenly weeing without feeling any sensation that he needed to go. He has genuinely never had a single accident since the day he was potty trained 5 years ago.
Husband is being totally chilled and telling me its just what kids do. He's fine in himself - no pain anywhere and eating and playing as normal but I'm freaking out. What do I do? I thought about 111 but then what do I say? My sons wet himself?! 😔

OP posts:
walkinthewoodstoday · 17/12/2022 21:55

It sounds like you are on a good pathway with bloods etc. I don't think a and E will help and might be stressful for him.

TokyoSushi · 17/12/2022 22:06

Agree that there's something not right here, how stressful and worrying for you all.

You might have to make a fuss here and push very hard but I think he needs to have a full assessment asap

oatmilk4breakfast · 17/12/2022 22:30

Another voice here just to say that in your shoes I would be ignoring husband and booking privately to see a doctor / paediatric specialist. These do not sound like ‘normal for a kid’ things at all. I’m sorry it must be so worrying.

MerryMarigold · 17/12/2022 22:41

OP, I was reading about a little girl with very similar symptoms in America. She's called Kelly Daspit.

PostAndGhost · 18/12/2022 07:40

I would say to ignore the hair and focus on neurologic symptoms. So if you end up to emergency , don't mention the patch as first symptom, just talk about dizziness, bladder, pain, head ache and then, after everything , add " oh , not sure if it is related, but his hair colour changed."

BlackSwan · 18/12/2022 08:11

Neurological problems do not show up in blood tests. Can you afford a private appointment with a neurologist?

LaraWearsZara · 18/12/2022 11:19

Thank you so much for the advice all. His bladder has been okay since yesterday mornings 2 accidents, although for the first time in years we took spare clothes to the panto for him.
He's had no more episodes this weekend with anything so my plan is to take him back to GP tomorrow and telling them of the new symptoms and see what she says.
I'll also look into private neurological appointment for him. I'm glad you don't think I'm going crazy.
Gp is thinking B12 or thyroid from what I can gather but I have also been wondering about maybe diabetes???

OP posts:
hashbrownsandwich · 18/12/2022 11:31

I'm a HcP but not a GP. I think the first thing they'll do is a urine sample to rule out UTI, we need this for referrals going forward so make sure they do that regardless.

Good luck and keep us posted, I've been thinking of you.

LaraWearsZara · 18/12/2022 11:48

Thank you so much 🤎 much appreciated and yes I'll keep you posted

OP posts:
ltappleby · 18/12/2022 15:12

I’m afraid I’d be wanting an mri brain scan. Would you consider asking the go for a referral?

MarigoldPetals · 18/12/2022 15:17

Could it be Coeliac disease? My DD had lots of weird neurological symptoms with hers (gluten neuropathy) as well as various symptoms from her nutritional deficiencies. Her eyelashes all fell out and she had joint pains and breathlessness. She couldn’t walk more than 50 yards.
She had very few bowel symptoms but Coeliac disease is a whole body auto immune disorder so that’s not uncommon.

Retsina24 · 18/12/2022 15:37

How worrying for you OP. Really hope you get seen and they investigate fully. Definitely be pushy. Hope your son is OK. X

3luckystars · 19/12/2022 00:35

I’d advise you to bring a notebook with you, with bullet points written of everything going on.
GPs are mad busy so be prepared for the appointment and write everything down.

good luck

TheMightyOak · 04/01/2023 00:19

How is your DS now @LaraWearsZara? Any luck with the GP?

LaraWearsZara · 08/01/2023 01:41

Hi @TheMightyOak thanks for asking.
The gp wouldn't see him :( reception gave me a telephone apt and the gp said that it doesn't sound like an emergency that he needs seeing for and to just monitor him. He has been fine since as in no more wetting accidents (still complaining of head and eye pain). He has his blood tests at a hospital on Monday so I will revert back with the results once through.
Thank you 😊

OP posts:
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