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

[LaraWearsZara]

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?! 😔

I have no idea but I'm bumping for you, in the hopes somebody with some knowledge comes along soon for you.
This would concern me too.

No advice but am bumping for you. I would be really concerned about this, too.

Ignore your husband, if that is not normal at all for your son and you feel that something is really wrong, then you are correct.

That all sounds really worrying, Op. Trust your instincts.

As a collective of symptoms maybe they just don’t equal something that a doctor would be concerned about? I know it’s really hard but you’re doing everything you can do and maybe there’s a chance you putting 2+2 together and getting 5?

Of course you know your son best and you're taken him to the doctors and you’re getting test and checks which is great but at this stage if the doctors aren’t really worried then try not to be either, they don’t really take risks with children’s health.

If he does this again over the next few days or he does it a lot today, why don’t you take him down to A&E and explain what’s going on? But it really might just be an off day xxxx

I think the wetting himself is a cause for concern when looked at with these other symptoms.
They will likely want to rule out a UTI first but obviously given his other symptoms I really wouldn't wait. A&E will be a nightmare at the moment but I really would seek further help.
Is there any way you can afford a private appointment?

I agree that the wetting himself is a significant change. Take him to A&E.

It sounds like this is completely out of character for him?
If so I'd take him to A&E. If you took him to an out of hours GP they would want him checking for the more serious conditions that can cause it so would send you to A&E.
it sounds like he needs a scan.

The first issue isn't normal, then coupled with the unusual incontinence where he's unaware of any sensations, I'd trust your instincts.

Not to alarm you but there's usually lots of stories of "He was fine and seemed okay" after something was found to be wrong.

At best, it's checked out and nothing is wrong.

Tbh I’d be looking at a private appointment with a neurologist or paediatrician. Paeds don’t always do private work though. I would just want to rule out anything major.

Hair related problems are usually autoimmune based but the rest of it sounds neurological. I really hope you get some answers, I would be pushing for MRI.

If you are concerned, don't ignore this. Sadly access to healthcare is not great at the moment which makes it harder ( I find) to make the right decision. I had a bad feeling about my ds during the pandemic, I was awaiting a GP appointment the following week and awaiting an 'urgent' 111 call back. 4 hours later no call so I phoned again, reassured he was a priority and a clinician would phone within 1 hour. I started to help my son get ready for bed, but, took one look and him and said to my DH we need to go to A&E, nothing had changed and I cannot tell you why. After head CT and MRI he was diagnosed with a life changing illness.

Please trust your instincts you know your son. I think if it were me I probably would take him.

I agree it’s not normal.
It looks all innocent when you say ‘wet himself’. But talk about incontinence and then you realise it’s not.

111 is prob the best you can do just now. But you need to go back to see tge GP on Monday and demand a referral.
What has the GP done so far apart from the dermatologist?
Any bloods taken? My first thought was an issue with VitB12 (which will affects the nerves but can also affect the hair).

That doesn’t sound right at all, I can’t piece it all together to give one unifying diagnosis but I think you’re right to be concerned. A&E is awful right now. Can you afford to pay privately? I don’t think there’s an emergency going on but should be seen soonish.

He isn’t just wetting himself, it sounds like he has suddenly lost control of his bladder. That seems significant to me.

Can you get to see your GP next week?

None of what your are describing is normal. I'd get him seen as quickly as possible and make sure you list all the things happening not just the current one.

I would definitely get him seen as soon as possible. That sound v worrying for all of you.

I wouldn't be waiting until next week, A&E would be my advice

In your shoes I'd consider a and e. Losing control of urine in the context of neurological symptoms seems off.

A&E OP (and I always say don't go unless you absolutely have to). The lad doesn't sound well and Jan 9 is a very long time to wait.
All the best.

That's what I thought too, I'd want that checked.

I would say A+E as well, OP.

And don't say he's wet himself, say he's suddenly incontinent.

Thinking of you both x

Trust your instincts. I would go to A and E and explain everything that has been happening. It doesn't sound like you are being made a priority but DS symptoms are getting worse. (As pp suggested MRI might be useful)

Hi OP, I would be very concerned about all these symptoms collectively. Is isolation, yes they might be ok and manageable.

You're going to have to make a big fuss and noise until someone treats it with the urgency it needs. All without alarming your son.

A medical professional needs to hear all these symptoms and timeline so they can understand that your child's health is deteriorating.

If you can book an urgent private appointment with a neurologist. Even a telephone consultation if they are busy. I'm sorry I don't mean to alarm you but I genuinely think he needs a diagnosis and if I was in your shoes I would be seriously concerned. Good luck.