Another A&E thread

Now that's all written down - I'm crying.

She still has eye pain and headache. Haven't heard about an MRI or hospital eye appointment. Or from CAHMS - the consultant had asked if mum thought she could have autism. She was referred before she was 5, she's now 7.
Hmmmm.

Her brother (3) who was starting nursery attached to her school after Christmas has now been told he can't start since his epilepsy diagnosis, three weeks ago. Since commencing medication his seizures are much worse and his mum now gets zero sleep (a couple of separate hours before the meds).

Her other brother (already at school) has developed two distinct types of stammer and a facial tick since a child in class told him 'I can't understand you, go away stupid idiot'. That was in front of (both) mums in the playground at home time. When she told his teacher, the teacher said 'what do you expect, no one understands him?' He has been on the waiting list for speech therapy for 2 years, his brother who is younger saw the speech therapist before him because he also has global delay. But this impediment appears to be a learnt/ingrained method of speaking and probably impossible to unlearn. He speaks in a monotone, robotically and each word is unintelligible. He stammers on the beginning sound of an utterance and frequently throughout (his spiel) he gets stuck and makes a breathy 'd' sound repeatedly until he can continue. He chatters away continuously and repeats himself until we finally 'get' what he wants/is trying to say. Unless, of course we have no idea, which is frequently, and he screams and cries tears of frustration.

We feel (I feel) that professionals take very little notice of my daughter, who has autism and can come across as abrupt, they have no idea of what she has to deal with every single day at home. She has three children who all have serious 'meltdowns' unless you are constantly walking on egg shells. This is 24/7 as the youngest appears to have one episode after the other at night. She is on her own. She works.

There are days when I can't physically be there for her because I childmind another 3 grandchildren who live an hour drive away.

On Monday she is going to ask the school to reconsider whether her youngest can start school. I have spoken with an online charity who have advised me what to put in an email to the school which will be sent by the end of that day. The charity has said that this is blatant discrimination.

My daughter's life is so hard.

Maybe I have painted too harsh a picture but this is her reality. The children can be full of fun and are truly delightful - but there are things which could help that she doesn't have access to.

I absolutely understand that this 'fight' goes on in countless homes for support for children.

It's not ideal - I feel that the dynamic between the children brings constant conflicts as they all have issues.

But I fear sometimes that my daughter is not waving but drowning.

No - there's no timescale been mentioned. DGD's brother, who is 3 years old tomorrow, waited three months for his MRI with GA and it was cancelled on the day twice.

Consultant said she'd need to be 'sedated'.

Her brother was diagnosed with epilepsy last week. He's been on Keppra for a week and his seizures have increased ten fold and his behaviour is shocking. My daughter rang the epilepsy nurse and she was told to keep to the drug schedule. I'm speechless - when we try to prevent him from hurting himself he turns on whoever's trying to keep him safe. It's like a colossal storm going on in his head. Heartbreaking.

Symptom update.

Day 42 of headache/eye pain.

Her eyelid feels like it is not opening/closing properly - it actually is but I thinks she's describing it feeling harder/heavier to open and close her eye.

Little update.

DGD has been to a hospital 2 hrs away.

Consultant was very thorough. DGD would not speak to anyone and would not let the consultant touch her.

She's now waiting for an MRI scan and to see the hospital optician.

In the meantime she has to make an appointment to see her local optician to get her glasses prescription checked.

She had a blood test. I don't think mum would've been able to drag her there if she'd have known she was going to have one. Four people had to help to hold her down/still while the consultant took the sample. She screamed the place down.

Mum said she felt like papa elf, when elf was sat on his knee.

The consultant is also trying to get her autism assessment expedited now.

@Mirabai

I had a look - she has a couple of those symptoms. Contracted pupil and drooped eyelid.

The eye with most pain has a smaller pupil which (obviously) makes the other pupil look dilated.

When the headache eases the eye pain continues.

I'm going to write down a timeline of symptoms for my daughter - she thinks that she doesn't get taken seriously when she speaks to doctors, so she likes me to go with her. Unfortunately, I'm unable to get out of a commitment on the day of DGD's appointment.

We've unexpectedly been called in to see a consultant for DGS who has been having seizures (today). He had an EEG for a few days two weeks ago - we think that something has shown up on the results. Hopefully, the news is not too bad - but I can't sleep for thinking about it.

I'm worried sick for my grandchildren and worried sick for their mum.

My heart has a very different rhythm tonight. It's beating out of my chest and feels like its erratic and stopping/starting. I feel dreadful - can't even begin to think what my daughter feels like.