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.

Great ormond Street hospital appointment has finally come through. It's at the end of November.

Glad your GOSH appointment has come through. Hopefully they'll come up with some answers.

Today after an awful awful night, we ended up at the GP and have started silent reflux treatment. I am really hoping this helps. However I don't have a clue about reflux silent or otherwise.

Am feeling very overwhelmed by all the different people she sees.

If you haven't done so already I'd recommend setting up a file. As 3 of my 4 ds's had complicated medical issues I found this easier than having lots of paper floating around. All the medical appointment letters and medical reports went in polypockets in an A4 file. I found if I didn't use polypockets the punch holes in the letters just got bigger and more ragged until letters started falling out.

I also kept a symptom diary in a separate notebook for one ds as he was seen every couple of months and it was hard to work out what had happened and when between appointments. There was a lot going on with him at the time.

Whenever one of the boys was due to see someone new I came prepared with a short printed summary of what had happened so far. This was because (a) they ended up with large hospital files that no-one was likely to wade through and (b) we had a few difficult experiences when a medical professional made significant mistakes when they asked questions and wrote down what were supposedly my answers. I thought we had a better chance of getting the correct info into the file if I produced it for them.

I know you've been through the medical mill as a family so sorry if I'm teaching granny to suck eggs here. It's just that I learnt the hard way over the years.

That's a good idea. I will do that this week and photocopy it all as well.

Because dh is generally seen by Harefield, they know him. Eve's seen by lots of different people and her notes are a bit all over the place.

Hi misdee i am new to this forum and have just seen your thread. I have 2 children with complex needs both of which have severe reflux . Both are tube fed via gastrostomy as a result because their swallow is so unsafe. Just a couple of thoughts on reflux. It can cause chest inf and pneumonias when food is aspirated as i am sure you know, this weakens the lungs and is damaging over time so log choking incidents and keep on to salt if you are unhappy. Also you could ask to be referred to gastroenterology for further advice if you have concerns over feeding and growth etc.
It can also make the throat ulcerated and very sore so bear this in mind and again keep on if you suspect your daughter is in pain.
It may well be that poor muscle tone is affecting her face as well as her swallow as one of ours has brain damage due to epilepsy and his swallow was non existent for a while as were any facial expressions. This has improved as he has got physically stronger.

Probably not telling you anything you didnt already know but sending support your way and hope gosh are helpful when you go

Hi flapjack fairy thank you for your post.

Was just coming to update a bit.

Referred to cdc. New speech therapist called to make an appointment. Discharged from audiology as hearing is fine. Got optomology in nov and hoping for good news from that as well

Gosh neurology is at the end of November.

Gosh neurology appointment tomorrow
Hoping for answers of some sort.

I've just read your thread, and wanted to send you and all best wishes for the appointment tomorrow.

Or even today!

Hi misdee.

How did the appointment go today?

Appointment today was thorough. We have a plan of sorts.

Eve's MRI from February shows swelling and abnormalities in her temporal lobes. The same MRI the local doc said was fine. 😡
She has low muscle tone.

Being checked for metabolic disorders, viruses, genetic disorders. Also an EMG of her facial muscles downwards as swallow is affected. It's not standard facial palsy and something else instead.

No answers today, but back in 3-4 months and hopefully tests will be done by then as well

Feeling really sad and down about things today. Whilst I'm glad we have a reason for her struggles though not a solid diagnosis yet, I am extremely sad because we don't know what route her eventual diagnosis will lead us down. We don't have any more answers than before, just more questions

It must be hard dealing with all the uncertainty when you're at the stage of learning what may be behind some of your DD's difficulties without having the whole picture. As you say you have more questions now and more tests to go through with DD and that is tough.

I hope you're also managing to have some moments enjoying your DD in all her gorgeousness without all the worries of what the future holds - from the photos you have posted she is scrumptious!

Thanks pannetone. It's very hard as we are still facing an unknown outcome :(

GOSH called last week to book EEG and EMG. I asked about bloods and urine which also need booking, she said she would call me back the next day to book all of them in, but never did. So am waiting for my phone to ring to book this lot in.

I'm still chasing gosh to book eeg and EMG and they never called back.

We are back at GOSH in two weeks time.

Glad that you've finally got the appointments booked - not that you really want to be back at the hospital...

Love the photo of your Sleeping Beauty!

I've been to GOSH for EEGs, always got loss of info in post and great there but phone a bit crap for contact.

Btw have you got a sleep EEG? We were pissed around on this, first eeg at I was told was fine, then later told it was useless and had to be redone by the specialist. She'd moved so much and you must be still. We used melatonin for sleep and it worked very well.

I don't know what sort of eeg. Am hoping she stays still long enough for it to get the readings they want. I will pop her in a sling if needed to keep her still as possible.

Movement like jaw, fingers, head looking around. She sat beautifully. The leads used to the machine werrnt mega long, with a sling it'd be awkward.

Small individual room, takes time to paste on each wire to the scalp, they bandage round to hold in place. Room has a bed, chair and few toys to distract.

Will take the kindle loaded with cartoons and Bing for her.

Received the write up of our last appointment from November.

Her MRI showed bitemporal subcortical cysts. She also has hypermobility (I queried this as it runs in the family)

She is being checked for neurogenetic and metabolic disorders.

We were back at GOSH last week.

Emg checked for ACF. The doctor said it's not asymmetrical.
Eeg was hard. Mainly because she was shattered by them and had enough of prodding.

Back in 2 weeks to see neurology and have clinical photos done