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Original poster

Don't even know if I should be posting here.

259 replies

misdee · 26/01/2016 20:28

Friday before 9.10am was normal.

Then we saw the GP about an ongoing issue (baby's face drops on one side at times). First time we had seen the GP as the HV had said not to worry as both sides of the face moves when she smiles. But I was worried so I booked to the see the GP.
Ended up with an urgent appointment at paediatrics at the local hospital.
Baby has facial nerve palsy of unknown cause. They are booking an MRI and neurology. Because she can move her forehead and eyes, it's unlikely to be Bell's palsy. They are looking for an upper motor neurone lesion. (It's amazing how much they put in notes these days to hand to parents).

So yeah, I don't know what's happening with my baby girl. She is 9 months, developing slower than her 6 siblings, but getting there. Been trying to get a SALT appointment sorted as she chokes on food and drink most days, but seems that the local website that's says HV can refer is wrong and I need to go back to the GP.

Just got to keep going until we see neuro I guess. Maybe some answers soon.

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PurpleHairAndPearls · 28/01/2016 10:54

It's irritating having to jump through hoops isn't it, our physio service is the same, you can't self refer even if you've been a patient in the past. I'm glad you're getting seen at least to organise the referral, good luck with it. I hope it's all swift for you.

Btw, 9!!! years ShockShock my god. I can't even remember what my MN was then. 9 years. Bloody hell.

Original poster
misdee · 28/01/2016 13:01

SALT want to see her within 2 weeks.

They accepted my self referral.

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Original poster
misdee · 28/01/2016 15:35

The bonkers thing is, that other than her mouth, I haven't noticed anything else. So I swing between 'oh my goodness it's going to be serious' to 'I'm sure it's nothing'

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PurpleHairAndPearls · 28/01/2016 16:51

At least they let you self refer, hopefully you will be seen very quickly. It's pointless me saying "don't worry" and "don't google" because that's what we do isn't it Smile I do sincerely hope it is nothing and your mind is set at rest ASAP. I'm sure someone will be here with some better advice as I'm not much use :)

Original poster
misdee · 28/01/2016 17:14

The way her face is presenting and that's it only her lower right side that's affected is typical of a brain injury. Like a stroke.

But she has no other indicaters. I haven't spotted any weakness or favouring one side of her body over the other.

So whatever it is, I am almost confident that it is just her mouth that's affected. Whether it leads to other issues later I don't know.

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Original poster
misdee · 28/01/2016 17:16

You are doing a lovely job just chatting to me :) I don't post on mumsnet much anymore as, 7 children keep me busy. But do read often.

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PurpleHairAndPearls · 28/01/2016 17:27

I would take heart from the fact that no one picked up on anything serious though when she was born or since, hopefully it is very localised and minor issue. If she is fine "in herself" that could only be good Smile

I am in awe of 7 children - it's amazing! I seriously can't believe it is 9 years since the big op, MN feels very different to me these days but the SN section I think has more of the original sort of MN "ethos" of being about support. How is Peter?

Original poster
misdee · 28/01/2016 17:41

Some parts of mn scare me now. It
massive. I follow on FB to keep up.
SN section has always been a safe haven.

Peter is ok, he had rejection a couple of years ago now, but is stable. Just his brain is a bit scrambled at times.

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2boysnamedR · 28/01/2016 18:13

I'm glad salt got back fast. Nice to know that when it does work, it can work fast.

Original poster
misdee · 28/01/2016 20:00

I have been very unnerved by how quick things have happened this last week. But am glad the NHS system is working.

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Original poster
misdee · 29/01/2016 09:32

Face is quite droopy this morning. Got photos. Why does it Change from barely noticeable to a big droop? She didn't sleep much last night, could it be tiredness related? I don't expect anyone to actually know, just pondering out loud.

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2boysnamedR · 29/01/2016 11:21

Some times the NHS is very good and they are usually so slow. I wanted CBT and was offered a appointment within a week after waiting two years for my sons OT.

Maybe it is lack of sleep making it worse? Hope it's something simple. It's hard waiting

Original poster
misdee · 29/01/2016 11:50

9-10month health check letter with ASQ checklist has come through. She is 9 months and 1 week. Had a quick look thorough the checklist and I will be ticking 'not yet' in most areas. Feeling a bit shit now, as I didn't think things were that bad.

Still my beautiful girl though, and will get there in whatever manner she can.

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Original poster
misdee · 29/01/2016 11:53

That's quick for CBT 2boys. Hope it helped x

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Original poster
misdee · 29/01/2016 15:59

SALT coming out on Friday to see her.

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PurpleHairAndPearls · 01/02/2016 12:10

That's not too long to wait I suppose, although it will probably feel like an age Smile I really hope it's something simple, fingers crossed for you and please do post to let us know how you got on.

Original poster
misdee · 03/02/2016 15:28

MRI is next week

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Original poster
misdee · 05/02/2016 12:57

SLT Has been. Baby is being referred for video fluroscopic swallow study as she is very concerned

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2boysnamedR · 05/02/2016 13:31

Hope that won't take to long?

5608Carrie · 05/02/2016 13:42

misdee thinking of you. I hope it all turns out alright. FlowersBrewCake

Original poster
misdee · 05/02/2016 15:53

Seems every time I calm myself down and think it's not that bad, it gets worse :(

Was really hoping to be told today that there was no issue. Instead we have a swallow study being rushed through as she wants it done before we see the neurologist. I have a feeling that she suspects what's going on. That gut feeling that you get.

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5608Carrie · 05/02/2016 16:23

It sounds very difficult. The unknown is a very scary thing. Try to stay positive. It could be gut instinct but then again it could be jumping to the wrong conclusion.

PurpleHairAndPearls · 05/02/2016 16:27

Oh misdee I do hope it's all OK and that they're just being cautious. When are you due to see the neurologist, do you know yet?

Is the MRI under sedation? Mine had scans when they were under 1 and IIRC (it was years ago!) DS had to be put totally under but DD was just drowsy.

Original poster
misdee · 05/02/2016 16:41

Sedation.

Every time dd6 coughed the SLT looked very concerned. Dd6 is chewing food fine, it's a swallowing issue. Other forms of nutrition were bought up as a possible, but will see what the swallow study says. SLT has left her direct number with us and to call if needed. She was going to contact the GP today if possible and really push the fact this needs doing ASAP.

I have had a full on week, dd1 has an inflammation of the iris and is one hourly eye drops, and dd4 sliced her foot open Wednesday, which then needed patching up again yesterday. I think I need my own parking space allocated at the hospital Grin

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PurpleHairAndPearls · 06/02/2016 11:17

Oh god, at least it can only get better! Sympathies to you all ThanksBrewCake

I hope they push it through for you so you get some answers ASAP.