Another A&E thread

[MyOtherCarIsAPorsche]

AIBU to take granddaughter to hospital this evening or will it wait?

She's been having headaches regularly this year. She describes pounding and pain in eye. GP said eye test - optician immediately said that she could see a large prescription. DG had glasses then three months later had another checkup and a stronger pair prescribed. She's due back in December. So I'm assuming that they're increasing the strength of the glasses in increments.

Her headaches have persisted. This current one she's had since last Friday. I picked her up from school on Monday and could tell that each footstep was making her wince with pain. She couldn't sleep Monday night because of pain and feeling sick. We've been alternating paracetamol and ibuprofen for pain relief. Saw GP on Tuesday who said it was nothing sinister but was referring her to paediatrician. This evening she was complaining of eye and nose pain and appeared to be light sensitive. She's woken in pain a couple of hours after she went to bed and her eyelid is drooping.

Is this worth a trip to A&E?

We're very worried.

Can’t remember how old she is but just reading about how much she hates liquid meds.

my DD, through sheer hatred of calpol etc powered through and taught herself to take pills fairly quick. My other son who gagged each time took about 2 months of frequent attempts to get the knack. They both have autism.

i read tic tacs are a great pill substitute to practice swallowing with. We explained it to them - once you learn to take a pill you’ll never have yucky medicine again. My DD completed her first full course ever of antibiotics the following year due to being able to take them in tablet form!

Ask for a play therapist to be present each time your granddaughter needs any testing.

OP how are things now with your DGD?

Hi. Just to say I’m thinking about you all.

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.

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

MyOtherCarIsAPorsche. Oh my goodness I make no wonder you’re crying it’s heartbreaking! Your poor daughter and you. Does your daughter need to work for money or is it for her sanity ? I don’t know how she is managing on zero sleep, I know we put our children first, but she also needs care.
I’m praying that you get some appointments through ASAP you must be so frustrated with the waiting times, two years for speech therapy when your DGS is suffering so much is ridiculous. Hope things improve very soon.

@MyOtherCarIsAPorsche just a big, big hug. I know it's not the MN way, but sometimes it's all you can do.

Is your DD claiming everything she possibly can? Are all 3 children getting DLA? Is she getting Universal Credit? Are both she and her partner (I can't remember if she has one, or whether she's doing it all alone) getting the carer's element of UC? Has she checked if she would be on enough money on UC alone and could give up her job for a while?

Has the youngest got an EHCP? If not, apply.

Also @MyOtherCarIsAPorsche could your DD apply to the Caudwell for an ASD assessment with 80% discount?

Reading all that makes me want to cry too. That’s such a heavy burden for someone who already has their own challenges to work through.

but those children have a mum who understands them the most, that counts for a lot.

When she told his teacher, the teacher said 'what do you expect, no one understands him?'

I recommend that your DD complains to the school about that teacher. If she's saying that to DD, what is she saying and doing to DGC when DD isn't there to witness it?

@Lougle

She has a min wage job and has a small UC top up. She is a driver. Her ex is an arsonist and a pervert who she is still frightened of. She has single person's discount on council tax. She works to support her family as a matter of principle. She's very rigid in her thinking. So does what she thinks is right and will not bend any rule/law.

She was awarded high rate dla recently and has just received the back payment for her youngest. I will tell her about carers element on UC?

There's no EHCP - in July the SENCO, who we were seeing for older brothers's speech, said that she would ring the current nursery with regards to collecting 'evidence' with regards to youngest's needs for an EHCP and then they would be ready to 'hit the ground running' after Christmas. This wasn't done but we sort of have this in writing as the Early Help service was there as well and she was making notes (but not official minutes). A consultant referred her to Early Help when youngest was diagnosed with global development delay. But now there is no 'after Christmas' as they have changed their mind.

An epilepsy charity have urged me to take this matter further but my daughter is in two minds as she doesn't want to cause bother and have the school treat her children any differently as a result of any animosity. So I am in two minds as to whether send this draft email on Monday.

I think that the school has thrown my daughter and my grandson under the bus. My email effectively throws three people under the bus (SENCo, deputy head and head) and feels slightly vindictive but then they have had my daughter fill out the forms as if he starts after Christmas and now he doesn't. So I'm trying to think that any action I take is justified.

I attended the last two consultant appointments for her youngest as she didn't feel that they were believing a word she said about these episodes/seizures. I also attended the appointment for the final diagnosis. Two previous 20 min EEG had been normal.

They finally agreed to a longer eeg after I'd been at an appointment for the first time.

At the diagnosis appointment, the consultant said that (without any prompt) they had not believed what my daughter was saying because she was describing a different type of epilepsy at each appointment and that no one could have different types of epilepsy. But now we know that he does have every type of seizure as they have said that there are some syndromes which can display these symptoms. These are syndromes which he has not been tested for yet but he has had some genetic testing which came back normal. They did not believe her despite approx 2 hrs of video footage showing different types of episodes from start to finish. The 48 hr eeg he had, mid October, revealed a clearer picture of exactly what was happening and there's definitely more abnormal activity at night as she's always insisted. Also, with hindsight, they've also admitted that the 'blue episodes' he's had since birth (32 wks gestation - mum had covid) could also have been seizures. We have video of those also. They told her it was nothing to worry about and to blow in his face 😳

So he's waiting to see a paediatric neurologist in Leeds to get a clearer picture. I'm concerned right now as the meds have increased his nighttime 'brainstorms' and his 'blue episodes' during the day. My daughter has messaged the epilepsy nurse about this two weeks ago but heard nothing back so we're assuming that's normal.

Life is too complicated. And I'm aware some people have it much worse.

It's hard.

She got exactly the same response from the epilepsy nurse after she'd left a message on the answering service to say that her youngest had had a huge tonic clonic episode and had been admitted to hospital. That was before his official diagnosis when they thought she was making it all up.

With regard to her older son, unfortunately, we can kind of understand where everyone is coming from with regard to comments about his speech. Whether it's said to our faces or behind our backs - it's the same outcome. He remains unintelligible - to everyone. His sister is best at interpretation - but even she doesn't know what he's saying 80% of the time. When he chatters to me in his robotic manner after school pickup, whilst waiting the 20 min for his sister to come out of class, the look of astonishment/disgust on peoples' faces is upsetting. We tend not to get the apologetic, squirming smiles of understanding.

This isn't the place to be asking.
Go to hospital.

Ok @MyOtherCarIsAPorsche so this post is from a while ago, but it summarises your GC nicely. I'm very practically minded and it strikes me that there aren't enough hours in the day for your DD.

So 7 year old GDD - has your DD applied for DLA? If not, that needs doing.
4 year old non verbal GDS - has your DD applied for DLA? If not, that needs doing.
3 year old epileptic GDS:

1.has your DD informed UC of his HRC award of DLA? If not, she must do that, because it will add £456.89 per month to her UC award.
1.She must tell them she is a carer for him, as that will add £185.86 per month to the award.

Has she considered applying for PIP for herself? From your description of her and how much support you give, I think she would qualify.

Then, your DD has more choices about work. It will take the pressure off. She needs to be able to sleep because if she doesn't, it will grind her down and she'll get really ill.

Perhaps read the thread. It's 465 posts long, so that tells you it isn't as simple as 'go to hospital'.

To help reduced the elder boys frustration could he start learning some sign language - either BSL or makaton? It won't delay or stop progress with verbal speech bit a) he will be able to communicate and b) people might have more sympathy with signing and unusual speech patterns.

That will only help if the adults around him also use makaton. If they don't, he'll be even more frustrated. Special schools tend to use makaton as part of their every day communication but it isn't common in mainstream.

I've been following your updates. Have no helpful advice but I'm glad some posters do. Just want to send hugs to you, your daughter and grandchildren. Your posts make me weep with sadness and frustration but I applaud your family's courage and persistence. Regarding your email causing animosity with the school, could it really make things worse if the school are not being supportive now?

If your daughter tells UC that one of her children is getting higher rate care DLA and that she is caring for them, so she then gets the disabled child element and carers element of UC, it would not be bending any law or rule for her not to work, it would be accepted that she is fully occupied as a carer.As regards claiming DLA for her other children, I don’t think they have to have been diagnosed with a particular condition, you just need to fill in the form to show how their condition affects them ie what extra care they need compared with an average child of that age.Citizens Advice may be able to help with this. Then it will be decided by the DWP whether they are entitled to DLA. As regards the comments made by a teacher about her older son,I think they are out of order( just my opinion but really!)

@Badgrief

The school said on Friday that they would address my daughter's concerns by the end of the school day today.

They didn't.

I sent the email.

Good. I really don't think you need to protect the school when they are obviously not helping your DD

really, is your daughter safe to drive, being chronically sleep deprived.
sounds from others' suggestions that she could become full time carer for her children, that would seem more appropriate all round.

also have you heard of this support group,
https://skybadger.co.uk/offline/

Is there any way that you could move in with her for a bit OP? To give her more help? (and let your other grandchildren get other childcare)

How is your granddaughter now @MyOtherCarIsAPorsche? Did your daughter manage to get answers as to the cause of the headache?