to go to OOH with tingly boy?

[stealtheatingtunnocks]

8 year old boy, fit and well.

Gets double vision in the mornings for about a year, and "wobbly eyes" in class - nothing found by optician, waiting for hospital optician appointment.

Went a bit deaf for a few days in one ear last week.

Said a few days ago "why does your body go fuzzy, mum?" described vague tingling and floating feelings in arms.

Today, since he woke up at about 7am - has pins and needles in both arms, both legs and is definitely weak. Is able to walk, but, slow and can't do things he usually would. Can't touch his nose with his finger. nystagmus tracking a finger. Is tired, pale, bags under his eyes but eating.

I know enough about neurology for me to now be properly concerned, but, am aware that I am also liable to being a bit neurotic as our other son has been very unwell for a few years with a different condition.

WWYD, he's probably a bit viral, there's been bugs going around the school - is it ridiculous to go to OOH? Am I that neurotic mum and just need to have a cup of tea and a cuddle?

Gosh, how very worrying for you though you do seem on the ball, medically speaking.

I'm glad the neuro appointment is soon, I hope the have some answers for you and that they're not too scary.

I have a theory, but am only sharing it begrudgingly as "internet diagnosis" is not something I fancy.

My children have a form of mitochondrial disease. It is a metabolic disorder that affect the way the body creates, stores, and uses energy.

It is also not generally diagnosed until everything else is ruled out, as it is quite rare. The increase in symptoms after increase in activity is suspicious, though. However, there are usually 2 or more separate systems involved, and your DS seems to have exclusively neuro symptoms.

I wish you all the best at the neuro consult.

Am posting for a moan. This is where MN comes in handy - I can't whine IRL.

Small is crawling this morning "sore feet" means he won't walk. Headache is now constant, as is nausea. He's eating, but, not as much as normal. Still himself, so, that's good, but the tingling and numbness continue in the same, vague, worse after activity pattern as before.

I don't really want to go to neurology this morning. I only want them to say "no, no problem, you were right to be concerned. We'd always rather see the child than miss something"

I've been following your thread - here's a hand hold and a 'be brave' sticker.

You are doing the right thing and if there is something behind this you will be in the right place to get the help ds needs

hey OP, I remember you and I am sorry this is ongoing.

often the rare and unique disorders take months and months to diagnose and only parents persistence can help speed things up.

he is young and healthy, and this means that when they get to the bottom of what he has there is a good likelihood of it getting addressed, and I really truly mean that.

keep on at it, and I am sorry this is happening

Best of luck with neurology, I remember reading this thread a while ago and crossing my fingers for you.

Hey Stealth sorry to hear of your problems with your DS.
Is your neurology appointment today?
Wishing you all the best.

Only just read your thread but good luck hope all goes well!

I'm here to say good luck for neurology this morning, and I hope they rule out all nasties quickly for your son.

Whilst it's awful to hear your son seems to be having worsening symptoms, it will be 'good' for a medic to see how he is presenting, as it might speed up diagnosis.

You can do this.

Best of luck

Have been following your thread and I'm glad you're being seen today. Keep us posted xx

I hope you get some reassuring news OP

Thinking of you and your DS OP.

I'll have everything crossed for an excellent outcome today.

Im always crap in medical appointments (I have quite a few due to a chronic condition) so I tend to take a little list with anything important that I know I need to tell them.

Thanks, folks. I really appreciate that.

There's not a lot of IRL support at the moment. DH is a lovely bloke, but, emotionally absent with this sort of thing. And, I don't want to worry people unnecessarily.

Practical head on:
videos of symptoms - check
timeline - check
list of questions - check
reference to headsmart campaign - check
teddy - check
book for me - check
phone charger - check
hankies - check
snack for Small - check
cash - check
key at neighbour for other kids coming home - check
dinner for rest of family - check

Anything else?

Going to get a taxi so we don't have to walk far, parking is poor at the hospital.

Despite taking a deep breath, chanting "it's not about me, I need information", and Big Pants being Hoiked, I feel rather fearful.

I hope it goes well, good luck to you and Small. You are totally rocking the organisational side.

I've been following your thread stealth but didn't have any useful knowledge to add.

Just wanted to send you and your lad good wishes and hope all goes well for you today.

Just read the thread for the first time. Sending you a huge hug and a virtual handhold. Hope you get the right support and start to get helpful answers today.

There would be something wrong if you didn't feel a bit fearful.

Will be thinking of you both & checking back later.

I would add to your hospital list:

Wet wipes
Bottle of water
Dress you and small in layers (hospitals can be really hot in some areas and drafty in others!)
Don't forget to take a snack for yourself in case you have to hang around for a while

Good luck for today.

Just read this for first time.
Just know that you are doing amazingly well and proactive in dealing with this. Fx for DS.

Hope it all goes well and you get to the bottom of it (and that it is something that is easily treated)

Also just read through for the first time. Good luck, it's very worrying for you but you are being very brave and practical. You're absolutely doing the best you can in a difficult situation. All the best for today

Hi Stealth,

Hope all goes well today. What you've been describing is pretty similar to my 2.5 yr old. The episodes, the walking etc. She's only young so wouldn't know the pins and needles. We spent 5 days in hospital as originally it was suspected to be JIA but what you're saying has hit me.

We met with neuro who said it wasn't her dept but we brought her to A&E on a bad day. Her bloods were off and still not normal. Hoping it's a virus as the timeline you're suggesting is similar to ours. Keep us posted. We are still waiting on bloods and a few others on here have suggested it could be a syndrome for us but as of yet, we don't know and we are guessing we'll have another episode (after nursery!).

You are absolutely doing the right thing! Trust your instincts.

Hopefully it is "just" a virus, I had very similar symptoms and that what it was for me.
You are both in the best place.