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

(253 Posts)
misdee Tue 26-Jan-16 20:28:05

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.

Ineedmorepatience Tue 26-Jan-16 20:34:56

Yes, you have come to the right place!

I havent got any advice and have not had the same experience as you but I just wanted to say be kind to yourself and I hope you get some more news about what is going on soon.

Good luck flowers

Ineedmorepatience Tue 26-Jan-16 20:36:36

Oh should have said, in lots of areas you can self refer to SALT although you would need a more specialised one for swallowing issues I guess. It would still be worth a phone call if you can google their phone number.

misdee Tue 26-Jan-16 20:40:05

I was going to self refer but site says referral must come from HV or GP. HV called back earlier to say SALT wanted GP referral, so looks like that's my morning tomorrow phoning to try and get appointment.

misdee Tue 26-Jan-16 21:21:19

I am hoping its something like bells. Other things I'm trying not to think about.

misdee Wed 27-Jan-16 09:33:05

Is it normal to want to hide away? I don't know what we are dealing with, am worried and scared. And I don't want to go to toddler groups or anywhere with lots of babies, as feel so sensitive. She is my perfect little baby, and I can't bear the thought of anything being wrong and hurting her. I've had people telling me about treatment for facial palsy, and I think noooo don't hurt my baby.

Ineedmorepatience Wed 27-Jan-16 11:12:01

Take your time, you have had a massive shock! She is still your precious baby that hasnt changed!

Lookdownthesofa Wed 27-Jan-16 11:13:21

Hi misdee, I didn't want to read and not reply either. It sounds as though you are going through a very worrying time. I'd say it's fairly normal to want to hide yourself away. Be kind to yourself and just do what you need to do to get through the next day/hour/minute. Keep posting here if you need to. Do you have any real life support?

2boysnamedR Wed 27-Jan-16 11:14:46

I think wanting to hide away is normal. I found out my first born had a hole in heart by accident when he was 6 weeks old. I didn't want anyone touching him.

Re the SLT - can you go down your GP and ask for a urgent referral? You don't want to be sitting on a waiting list for months. You can escalate this if the wait is long in various ways but don't worry about that part yet.

Hard but best to avoid Google. Three of my kids have a form of spina bifida. I got my sister to Google to give me only the facts I needed to know. Turned ok for us ( didn't know it's very common - lots of people are unaware they have this type).

PurpleHairAndPearls Wed 27-Jan-16 11:23:09

Misdee are you the poster I remember from some time ago? If so, I remember the night of your Dh's op and the MN vigil.

Re your DD I'm sorry I don't have any proper advice for you but just offering a hand hold and saying yes completely normal to hide away. I'm hiding right now too thanksthanks I hope you get some quick answers.

hazeyjane Wed 27-Jan-16 11:28:49

Misdee, I would look for the local SALT contact number (they usually have an advice line) ask to speak to someone wrt to swallowing problems. When you speak to someone then explain that you are concerned about your baby's swallow as she is choking on foods, and explain about the neuro referrals. If they can't help you on that line, ask for a SALT who deals with swallowing issues to call you back.

When Ds was 10 months old, he was referred to SALT, and the referral was lost, when I rang I explained about ds's swallowing issues (choking on food and drool, pushing food out with his tongue, unable to eat solids unless thickness of purée). After some persistence on my part (ahem!) they arranged for someone to come out and observe him eating within a week, and he was referred for an urgent video fluoroscopy (swallow study) to see whether he was aspirating food (he was).

SALT referrals wrt eating and swallowing issues should be dealt with urgently, compared to speech issues.

Please don't worry about wanting to hide away, it takes a long time to adjust, and sometimes answers don't come quickly (we still have no diagnosis for Ds and he is nearly 6!) Deal with each thing as it comes, give your baby girl a huge cuddle, and come on here for support.

Oh and Google portage in your local area - they are imo the best service for pre school age children that need some extra support, and can guide you in the direction of different agencies if you need them. They sometimes have long waiting lists, so get in early. Ds started from 1 year and went up to starting school.

misdee Wed 27-Jan-16 12:04:32

Yes purple, my dh is pink peter.

I have googled as I wanted to know what they were looking for. So now I know. And it was what I suspected. But I stupidly listened to the HV when I raised concerns months ago who said not to worry as she can move her face when she smiles.

All the emergency paediatrician said was this is unusual. They see facial palsy which heals in the time frame this has been going on, which hers hasn't, a brain issues which worsen the symptoms and hers hasn't got any worse. I asked what the paediatrician we are being referred to specialist is in, he said 'oh just a paeditracian' dude, I have 7 children, 2 who are regular hospital go-ers, I know you generally don't see 'just' a paeditracian when they suspect something going on. Anyway GP confirmed that we are now under a neurologist. Which is what I suspected.

I don't know if we need portage as we don't know if we are looking at not-serious facial palsy or brain damage.
No appointment letters today have come through so still waiting. Have nagged peter to put his hospital appointments on the family calendar so I can arrange things as needed. (He is seen at harefield every 6 months and I know he is due in in February sometime).

Just picked up dd5 from preschool and will maybe take dd5 and dd6 to the range to pick up some odds and sods, and to pretend things are ok.

misdee Wed 27-Jan-16 12:36:25

First picture in spotty top was taken in sept.
Next picture was a couple of weeks ago

HHH3 Wed 27-Jan-16 13:17:27

Hi misdee. I know you from a Facebook group and through others IRL so know what area you're in. I'd second ringing SALT direct. Just over a year ago I self referred by going to a SALT drop in at a children's centre. Can't believe things have changed that much since then. You can google when the drop ins are and just turn up.

misdee Wed 27-Jan-16 13:26:34

Hi HHH, if I can't get through to ththe GP about referral by the 3/2/16 (should I take an emergency GP appointment for this? Or try and book a slot which is 2-3 weeks wait), then I will go to Applecroft drop in session.

Dh car has a puncture which has now kept is home whilst he is trying to sort it. His brain injury from his strokes pre-transplant means he needs help with this stuff. So overseeing his first foray into sorting tyre repairs online

HHH3 Wed 27-Jan-16 13:46:02

If it were me, given she's having problems swallowing, I'd be ringing to see if they have any cancellations. If not then I'd get an emergency appt. The last thing you want is for her to aspirate on something.

RealHuman Wed 27-Jan-16 13:49:44

This is probably completely inappropriate and out of place on this thread and if so I sincerely apologise but OMG those adorable chubby cheeks! Such a gorgeous baby <broody>

misdee Wed 27-Jan-16 13:59:28

Oh no, that's totally fine, she has scrumptious cheeks that get covered in kisses from myself, dh and all her siblings.

Will keep trying GP, dh has disappeared out to sort his car and it's a bit loud ATM here with the girls to make a call.

5608Carrie Wed 27-Jan-16 14:06:02

She is a beautiful child. No medical knowledge to add but cakebrewflowers it sounds very stressful.

I would go with the emergency appt aspiration is a real risk.

2boysnamedR Wed 27-Jan-16 15:37:21

She is very cute! I'm not sure if your area but if your GP or hv referred you I would phone the GP and them to call you back. Making sure she will be seen ASAP for SLT. If it's months wait then you can find out the pals dept wherever the SLT is under. Complain to go practice manager etc. Had to do this myself but after a 16 month wait! ( not for SLT)

My son is under a neuro pead for asd. She is very good

hazeyjane Wed 27-Jan-16 16:05:35

I think you may get more joy from ringing the speech and language service directly, rather than gp, who will do a generic referral.

(Agree about the gorgeous cheeks!)

PurpleHairAndPearls Wed 27-Jan-16 16:47:48

I often think of you and Peter - it feels as though it was only a couple of years ago but must have been longer! Your DD is absolutely gorgeous. Sorry to hear you are worried, I hope you get some proper answers sooner rather than later thanks

Girlwhowearsglasses Wed 27-Jan-16 17:08:57

Gosh OP she's gorgeous but I'm pretty shocked the HB thought that drop in her mouth looked normal.

I really hope you get to see the right people ASAP.


misdee Wed 27-Jan-16 17:16:05

Purple, 9 years this August. Doesn't seem that long ago. 4 more children since then. Moved house twice, got a dog, I was meant to be starting college this September (had my interview last week before all this), now my heads all over the place and I don't know if to accept or not.

I know, the drop on her right side is noticeable when it shows. But it is only there when relaxed. So every time I have seen a health professional I have taken photos along. Which paid off last week when I took her to the GP as he was straight on the phone to the hospital rapid team to get her seen that day.

misdee Thu 28-Jan-16 09:07:25

Managed to get a doctors appointment for this afternoon to get referral to speech and Language about baby's swallow.

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