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.

Fantastic!

Lazy Saturday.

Got another week with no appointments. However the pharmacy hasn't put her prescription in, so been calling round local ones to find a box of carobel I can buy over the counter to tide us over till Monday.

Hoping to get to the local car show tomorrow with the youngest children.

Not updated for a few weeks.

Eve has started screaming and back arching most nights and some.days as well. I took her.to the GP today and he said she has a sore throat. I'm a bit about that as I don't think the sore throat is why she is screaming, but rather it's another thing causing the sore throat and pain. She is like a newborn with colic. It's very distressing for everyone to see her like this

Her sore throat might be from reflux?

That was my concern.

She still isn't eating much. And has been very droopy.

But no chest infections yet in june

And just because she is cheeky

Ooooh Misdee, she is bloody gorgeous.

I am in morning chaos but am going to post later!

Dd6 was turned down for DLA. Then reconsideration was also turned down. The main reason is because of her age. Although see does have extra care needs they don't exceed those of a normal child her age.

I have 4 weeks to decide whether or not to appeal. Ahead of us is physio appointment and optomology. Thinking I'll get those appointments done, get more infomation prepared and ask for appeal at the last minute. Basically give ourselves as much time as possible to gather more infomation.

We applied when ds was just over 1, he was turned down originally, but then given hrc after a reconsideration - ds's paed wrote a letter specifically stating that ds had care needs throughout the day and night that exceeded a child of his age. At that age, he wasn't able to sit up, couldn't eat solid food, didn't play with toys, needed turning over in bed, but actually spent most nights propped up on me or dh (still does actually, at 6!) and due to his constant silent reflux, spent a lot of time in agony, he constantly had chest and eye infections, he drooled constantly to the extent that he was choking on drool at night, and had had several seizure like episodes. He was having physio, opthalmology, neurology, ot, SALT and was about to start going to a child development centre with me.

I think so much depends on who you get reading the form on the day, and on the professionals backing you up.

The coughing does sound like it could be silent reflux. Ds had constant chest infections and pneumonias at this age due to aspiration, has your dd had a chest xray? Ds's showed a haze on his left lung, where they hink he may have aspirated fluid in the womb. Whenever he has chest problems (and he now has asthma on top of the chest infections) where this haze is is always where any crackle or wheeze is focused.

Ds became a lot stronger healthwise when he was able to walk (which was about 2.5).

How is she doing otherwise?

sorry meant to add - diagnosis can take years (ime!) if ever, I will never stop looking for a diagnosis for ds, but have made sure I am 100% clear about his needs, on which a diagnosis should make no bearing. Ds is in a complex needs resource base with a 1-1 at school, and still gets DLA - because he has high needs, whatever the cause of those needs may be.

She is doing well. Apart from not eating much and screaming.

She is standing and letting go. Can stand for a few seconds unsupported.

I am getting concerned as her speech/sounds aren't really progressing

Old neighbour to the side of us has complained about the screaming.

Physio today.

She is doing really well.

They will see her again in two months when she is hopefully walking so they can check on her gait.

We have facial exercises to do. As her facial weakness/palsy is still the major concern.

SLT appointment next week

Misdee she is stunningly beautiful.
I well remember pink Peter and staying up until the small hours chatting on MSN whilst you waited to see if the donor heart was a match.
The time when it proved not to be suitable and then the big day mid August.
I think most of MN stayed awake all night, people were texting others when there was any new news, MN was much smaller and it was unusual to see a name you didn't recognise.

Just wondering how Eve's throat is now, does inside her mouth look sore?
Just that it followed a course of antibiotics and I was wondering about thrush?

Thank you klaptout

She doesn't show any signs of thrush in her throat or on her bum.

Slt today.

She thinks Eve may have reflux from what I was describing. So need to see if meds help.

But all being well and no chest infections, she will see us in 3 months :)

She choked today on food. She hasn't done that for a while. Scared me.

She is scrummy

Sorry to hear she's choked again. It sounds like you have loads in back and forth to appointments.

I agree about asking for a consultant to write a supporting letter for dla. Maybe the salt would be appropriate here?

Tummy troubles. Yuck!

Also had optomology appointment today. She has astigmatism, far sighted. She may also have a squint. However nothing showed up today on their tests but because the facial palsy appearance intermittently, the squint may be as well
So no treatment started today, but review again in 4-6 months to see if glasses are needed.

Things at the weekend took a rapid change.

Background infomation. Dh had a heart transplant almost 9 years ago. He has always been on a medication cellcept/mmf. There was no concerns about men fathering children on it, just women.

Advice changed in Dec 2015 due to a theoretical risk of men fathering children with birth defects. Including facial issues.

I have spent the last few days trying to figure out what needs to done. Dh has contacted his medical team who have said they will discuss this in August. I tried to fill in the yellow card reporting thing but didn't have an option for side effects from fathers meds so had to do it the long way round and email them. I have contacted salt with the info we now have in case it's relevant. And got to try and speak to the GP. I have no clue if it's even related at all. Or if I am doing the right thing.

Dh sees his consultant this week to discuss if his medication could've caused this thing.

I chased GOSH and turns out they haven't received the referral. So that's hopefully been done now.

Audiology this week and physio next week.

Still no further with a diagnosis.

But she is walking!!!

It's all the waiting that stressed parents out I think. Years ago my fb ds had global developmental delay and a few quirky things and I remember it taking ages to get questions answered and test results back. Glad she's walking.

The waiting is so frustrating.

Audiology today. Didn't get discharged. She either can't hear some pitches or had had enough by then. So back again in 8 weeks. More waiting.

Discharged from physio

Referred to paediatrics due to delayed development.

I just don't know anymore what's going on. No one seems to know.