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.

Dos had a swallow study rushed through, and MRI and an EEG ( because there was a suspicion of seizures) the swallow study recommended tube feeding, as Ds had an unsafe and slow swallow, but after much deliberation and discussions with paed's and SALT, we made the decision not to tube feed (there are obviously times where tube feeding is the best and only way, but we had the good fortune to be in a grey area!) and followed a careful regime of thickened fluids and different textures.

The MRI and EEG was clear, although there is still a suspicion about seizures, and the MRI will be repeated this year when he is 6.

At first there were a lot of scary tests done, and everything moved so quickly, that it terrified me, but in hindsight I realise this is to rule out the very worst case scenarios (not much comfort when you are right in the middle of it)

5 years on we still have no diagnosis for Ds, he still has a droop on one side (his eye is more affected than his mouth, which was more noticeable when he was younger), he still has stiffness on one side, and has a range of health and developmental problems, but the sens of panic over what lies behind it all has mostly gone.

I hope this bit goes quickly, good luck with the swallow study and MRI. [flowers)

Thank you both.

I have just been down OOH As dd6 sounds chesty today. Just a cold apparently.
Hazeyjane I'm sorry you don't have answers as to why. Do you get support without a full diagnosis as to why.

Hope she feels better soon.

It is more of a struggle, because so much springs from that initial diagnosis. But he is in a sn unit within a Mainstream school, he sees a SALT, physio, OT, paed, skeleto muscular consultant....etc!

When we met a neurologist, he straight away said that he thought Ds had a genetic disorder, even though the initial microarray had come back normal. He is now under a geneticist (who pointed out certain genetic markers) and part of a study which looks into new testing methods and which means that one day he will maybe get a diagnosis. There is a website called SWAN UK www.geneticalliance.org.uk/projects/swan.htm that has lots of information and support if you are in that waiting place while trying to find a diagnosis.

I hope you get some answers soon. Waiting and constantly been seen by health is the worse time as its all the "what ifs"

I'm hoping the MRI does gives us an answer of some sort, because I can't imagine not knowing.
Will having a cold affect her being able to have an MRI under sedation?

I honestly don't know about the cold. Maybe not if its just a light sedative?

I had a MRI and it's really important not to move or they have to start again. It's bad enough trying to stay still as a adult.

I think the same rules apply for sedation as for GA, but I am not sure. With GA if is just a cold with no temp, it is usually ok, but if there is a temp or the risk of breathing difficulties then they err on the side of caution.

Baby has a chest infection. Both lungs, Dr suspects she has aspirated and it's caused infection. Is now on antibiotics. MRI is booked for Thursday, so I need to phone in and see if it can ahead.

Oh the poor thing! Gosh what a stressful time you're having

Wow, it never rains but pours - hope it can go ahead X

Sorry to hear this. Good job it's all the system now. Hopefully they will want the MRI out of the way before this can happen again. Hang in there, your doing well

MRI has been done. She dropped off to sleep quickly, and her face droop became apparent at the same time, almost to remind me of why we are there (still swinging emotionally about it being nothing and everything will be clear). She woke up briefly afterwards to have some milk, then fell back asleep. We were home by 1pm. Been told to start chasing neurology next week if no appointment has come through by then.
Swallow study is booked for next Thursday.

Thinking of you, glad that's one thing over with

Glad that's one out if the way, let's hope they speed everything through so you know what's happening X

Just wanted to send you some support. My DD started to have seizures out of the blue aged 8 months a year ago, and we went through the same process of being normal one day and into neurologists, MRI and a whole heap of scary possibilities the next. Her diagnosis ( West syndrome) is bad enough by itself, but the worst differentials were ruled out and a year later we still don't have an underlying cause. I really identified with you saying you feel so fiercely protective of your perfect baby. I hope your tests and appointments come through quickly and you get some answers. Dealing with a known condition is a lot better than scaring yourself silly with the possibilities.

Thank you Milo.

Dd6 had a massive choke over dinner. Thursday can't come soon enough.

I'm going to find a first aid course to refresh as not done one for many years.

Been told to continue feeding her as normal but it's so worrying.

Baby is aspirating on liquids, so will be thickening feeds

Coming back to update fully

Baby had her videofluoscopy today. She coped fine with purée, yoghurt, biscuit. All went fine. then we started the milk. All seemed to be going ok. But then a small bit slipped into her airway. Just a small amount, no coughing or choking. Confirmed that she IS aspirating, and thin fluids are to be avoided. So we know have a plan to thicken fluids to a creamy consistency. Hopefully this will lessen her chestiness and damage to her lungs. I am happy with the outcome from today, as it means I'm not imagining it. I would be happier still if she didn't have these issues at all.

Hopefully will get neurology appointment soon to discuss the outcome from the MRI.

It's good that you're getting some answers and a plan of action. I hope you get your neuro appt soon

Appointment is through for mid April . Feeling a bit more relaxed now as to me that says nothing major that needs seeing to straight away.

SLT back out to see is this week to see how we are getting on with thickening fluids.

Is that's what it's going to be like from now on? Appointments week on week?

1.5 scoops of thickener and still coughing and choking, taking it to 2 scoops tomorrow.

I'm sorry that I don't have any knowledge of swallowing issues, but as you say if the appointment isn't until April there doesn't seem any serious very urgent problems at least. It must be worrying though.

Did you have time to look at first aid courses? I always thought they should be offered to every new parent anyway, perhaps with the ante-natal classes (if the NHS still does them! My DC are older now). I did some for work but I'm sure they're out of date. I might look into it too!