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

[misdee]

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.

Today we saw the neurologist. I was hoping for diagnosis or discharge.

We got neither

She is a puzzle and we don't know any more really. Her MRI was fine.

Being referred to GOSH to see neurology there.

We have shoe success!!!

To add about the shoes.

When we saw physio they suggested putting her in supportive shoes rather than barefoot as her ankles are a bit wobbly. I had been trying to get cruisers for her but had no success in local shops as she has little fit, wide and a high instep. So we went back to the shops to try again. Nothing would go on her foot. We have tried countless shops. Someone suggested a fairly local shop in potters bar, precious soles. We went this morning and he suggested these boots. A brand called pom d'api. They aren't cheap, but they fit her beautifully and are very good shoes.

Glad you eventually found well fitting shoes misdee _ they are also extremely cute!
Hope you don't have too long a wait for the GOSH neurology appointment.

To do list this week

Book gp appointment about audiology
Call HV team to be moved over to their SN HV service.
Ask about cdc
Debate with myself over and over about dla.

Instead of wasting a lot of precious time & emotional energy debating whether to apply for DLA, why not use that time & energy to fill in the form.

BUT don't put the date on it (yet) and don't commit yourself to sending it off until/unless you feel more comfortable.

You'll find you either feel fine about it, and are relieved the stress & work of completing the form is done. Or you'll feel you don't want to- and that's fine, just shove it in a drawer.

And then, if you change your mind at a later date, the work isn't wasted cos you can make the necessary updates/amendments. At worst it's "copy out 2/3 of it into another form, with a few new bits = good to go"

The DLA would pay for some more of those lovely little boots- kids' feet grow fast!

That was dh point about doing the forms, the cost of her boots.

I keep telling myself that she is fine. But then a doctor tells us she isn't.

I will print out the forms this evening and look over them. I don't know how many areas I could fill in. She seems so young.

I assume someone has talked to you about asymmetric crying facies? It's a congenital missing muscle in the lower lip that causes a droopy face only in lip and an angular smile, cry etc. My son has it. We were told it was facial palsy when he was born and he was given a brain scan at 4 months but concluded it was ACF. This can be linked with heart conditions and a condition called 22q11 deletion so my son had those checks, but once he 'passed' those he was signed off as having this minor birth defect. He's 11now and find in every way, I barely notice his lip these days. It didn't affect speech. I am trying to find a pic of him when younger for you to check against your dd's appearance.

I should add, loads of doctors health vistors etc haven't heard of ACF and talk about strokes, facial palsy etc. There is an ACF page on the facial palsy website if you haven't had this ruled out.
It' here
www.facialpalsy.org.uk/about-facial-palsy/causes-diagnoses/developmental/asymmetric-crying-facies/278

ACF has been mentioned. But it doesn't fit. Her facial droop disappears when crying/smiling and is visible when relaxed. Which is the opposite to ACF I believe. However, If it is that, and without the associated issues of caylar syndrome, I would be very relieved. I am assuming that GOSH will be doing genetic testing once we get seen there.

How did you find all the testing with a young baby? Did you find support easily?

Eve has another chest infection after choking last week. SLT is coming out to assess her again next week and to arrange another videofluroscopy.
I don't know what the next stage is. She is already on stage 2 for thickening and still aspirates. She also has silent aspiration so we cant rely on her coughing as a sign.
I have printed out the DLA forms. Will probably make a start this week at some point.

Forms filled in. Hard to do without a formal diagnosis. But think they are ok. If they turn it down then so be it.

Now thickening to a pouring custard consistency, to see if that helps. Will reassess after the summer if she stays chest infection free.

And I think she has chicken pox. Which explains the incessant screaming we have had all weekend.

Well done on getting the DLA forms done. Not having a diagnosis shouldn't matter - it's care needs that count.

Sorry to hear that DD has another chest infection after choking. And now maybe chicken pox to cope with . and to keep you going and calamine lotion (no icon for that!) for DD.

Just back from the doctors. The rash isn't chicken pox. Yippee. Sunny weekend ahead so we can go out.

However she does have another chest infection so is now on more antibiotics.

Home again after a lovely hotel afternoon at a local fun day. Was nice to get a sunny weekend without having to dash to out of hours. Though dd2 (13 years old now!!) Woke up having a hayfever induced asthma attack. Got it under control and upped her steroids for now as well.

Sounds like a lovely afternoon. Hope big Dd is ok

Your littlest DD is just scrumptious - what a beautiful mop of hair and those gorgeous cheeks!

Hope the doctors make some progress regarding a diagnosis and in helping her to eat without aspirating so frequently.

She is fine now. Upped her steroid inhaler whilst pollen count is high. Added in nasal spray and eye drops as well as her antihistamine. She actually went outside today without complaining about hayfever.

Dd6 is unsettled tonight. Not sure the new antibiotics are agreeing with her.

Thank you MyNewBearTotoro.

Maybe the genetics will show something. But sometimes they find something and its doesn't give much of a answer. Genetics has been a factor with my boys but no one else has the exact same complication

Struggling to get thickened fluids into her this weekend. On the hottest weekend so far

I have given cooled boiled water untickened as desperate. SLT said that would be OK. Still worried in case it's the wrong thing to do.

This evening she said mamamama

Hooray!

That's such wonderful news! What a beautiful moment that must have been for you.