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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Another A&E thread

534 replies

MyOtherCarIsAPorsche · 12/10/2023 21:53

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.

OP posts:
Thread gallery
13
ThequalityoftheReps · 18/12/2023 16:46

OP - no advice to add but as a single mother in a similar position to your DD I want to say how brilliant you are supporting her. It's not easy for you to help with and witness id imagine.

Weenurse · 18/12/2023 07:18

That all seems a bit more positive.

Original poster
MyOtherCarIsAPorsche · 17/12/2023 23:38

@MuchuseasaChocolateTeapot

I think there's a link that ties us all together as a family. There's autoimmune issues in the family, EDS, POTS, autism, dyslexia and dyspraxia. All the women on my side of the family, including my daughters have either an underactive or overactive thyroid. All have trouble with joints/pain.

Representatives of the local MP were going door to door in my daughter's village today asking if the (new and very young) MP could help with any issues. My daughter mentioned her youngest son and has now formally contacted the MP on their parliamentary email - so we'll see if she gets a positive response.

On more positive notes, the consultant who diagnosed epilepsy in DGS has written a letter in support of him having his 30hrs provision in one setting. She said that she wouldn't usually get involved with 'school' issues but has made an exception. And DGD's MRI is 4th January.

OP posts:
MuchuseasaChocolateTeapot · 16/12/2023 11:09

@MyOtherCarIsAPorsche good morning. Your posts haunt me, you write so well and I can hear the desperation in your posts. It seems like you need someone with clout on your side. I wonder if it is worth seeing a private paediatrician (one attached to a hospital), with your daughter and all 3 children? It feels like they are currently reluctantly firefighting and doing the bare minimum for each child individually. If they could see all 3 and realise that there is something going on, perhaps something underlying them all, and that your poor daughter is drowning, maybe someone senior would take ownership and treat them as a family? Perhaps look for someone with a neurological background or interest or at least genetics, because I’m sure there must be a link?

Frankly even get your MP involved. No-one should have to live like your daughter is without a lot of support (and that shouldn’t only come from you!). God bless x

Original poster
MyOtherCarIsAPorsche · 13/12/2023 12:14

Another thing happening at the moment - grandson was diagnosed with epilepsy recently. He was due to start at the nursery attached to the local school that his brother and sister attend after Christmas.

Mum received the forms to fill in for his 30 hr provision. She put down his diagnosis in the medical information section. She was then asked to reconsider whether or not she wanted him to start in January. When she confirmed that she did want him to start they said that the nursery was full to capacity.

When she questioned this they then said that maybe he could start 15 hrs in April. This is in writing as it was mentioned at a SENCo meeting for her older son.

When she pointed out that she had been told the nursery was full after Christmas, how could he start in April if there were no places left In January, she was told that he wasn't offered a place in April - it is on the minutes of her last SENCo meeting.

When she formally complained about him not being able to start, after being told by the SENCo in July this year that she would contact his current nursery (paid) and ask them to collect relevant information to inform an EHCP for him so that they could 'hit the ground running' when he starts in January, she was told that she was confused.

My daughter then put in a freedom of information request with regards to the number of children on role in nursery for January.

The school then offered her an 18 hr placement to start in January - after insisting twice that there were no places.

She is now in the process of trying to convince school that a split provision would be detrimental to her son - she has this in writing from two different consultants.

I think that the school see him as a risk that they do not want to take and are not willing to make any reasonable adjustments to accommodate him.

My daughter's older son cannot communicate with his peers or teachers as his speech is unintelligible - she is battling to get a speech therapy appointment. He is becoming increasingly isolated at school.

All three children are possibly autistic.

Everything is a battle.

It's draining.

OP posts:
LakieLady · 13/12/2023 11:43

Really sorry to read that there's so little progress @MyOtherCarIsAPorsche . It must be awful for the poor little girl.

Limetreee · 13/12/2023 09:54

My heart is breaking for your poor little granddaughter. So sorry for you all, hoping that you hear very soon.

Poppsidoppsi · 13/12/2023 08:25

Poor, poor child. At least (and I can’t believe I’m saying that), she is no worse, but terribly sad that she is no better. I hope the family is doing as well as can be with everything else going on medically-wise with the children. I’m hoping you all get answers soon and someone can help your dear granddaughter x

Original poster
MyOtherCarIsAPorsche · 13/12/2023 07:56

@Poppsidoppsi

Still daily headache/eye pain. Occasional eyelid droops. Waking during the night, crying in pain.

Consultant had told mum to take her to the optician again before next hospital appointment - the optician was bemused.

She's still waiting for hospital eye test and MRI. The follow up letter after the paediatric consultation said that she would be seen in the next paediatric clinic, but no appointments as yet.

Lost count of the number of days she's had pain now. Her teacher says that she's putting her head on her desk more often at school.

The 'good' thing that someone pointed out is that there are no new symptoms/deterioration.

OP posts:
Poppsidoppsi · 13/12/2023 06:27

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

Strictlyfanoftenyears · 30/11/2023 22:33

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)

alexdgr8 · 29/11/2023 19:06

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/

Offline – Sky Badger

https://skybadger.co.uk/offline

Badgrief · 28/11/2023 00:24

MyOtherCarIsAPorsche · 28/11/2023 00:06

@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

Original poster
MyOtherCarIsAPorsche · 28/11/2023 00:06

@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.

OP posts:
Starwind74 · 27/11/2023 12:55

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 · 26/11/2023 17:19

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?

Lougle · 26/11/2023 15:50

OhBeAFineGuyKissMe · 26/11/2023 15:42

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.

OhBeAFineGuyKissMe · 26/11/2023 15:42

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.

Lougle · 26/11/2023 15:31

Daphnis156 · 26/11/2023 14:28

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

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

Lougle · 26/11/2023 15:30

MyOtherCarIsAPorsche · 14/10/2023 22:13

@Dita73

There is a poster on here (Mumsnet) who knows me (not this particular thread). She knows I'm telling the truth.

@Lougle recognises me from other threads 🥰

My daughter's children are all waiting for ASD assessment. Her oldest is having a nine day headache. Her son who is 4 in January is non speaking and has recently lost a significant amount of weight because he is refusing food. Her youngest son who is three next month has global development delay, he does not speak, he has seizures and on Monday he is having eeg wires attached to his head until Wednesday. There will be cctv monitors throughout the house which will record him. He had two seizures at nursery this week.

Their mother is an amazing woman who exists on next to no sleep and still manages to turn up at work. She is the best mum and I admire her no end. She spent this evening decorating her immaculate house with Halloween decorations for the children to see in the morning.

My husband had an aortic dissection last year and a paramedic refused to transfer him to the Yorkshire and Humber centre for excellence for specialist surgery because they didn't know how to work the equipment which was keeping him alive. This is when I had the support of a true angel on here.

I am at our static caravan in the north because my husband is absolutely livid that I haven't been here with him since April (his personality changed after his extensive surgery). The reason I haven't been here is because I was told my mother was dying. I was with her every day until she died at the end of August. Her funeral was in September. So I am here, now, for the time being in order to see a bloody sheep show that I'm not interested in whatsoever - it was crap by the way. It was the same last year - I couldn't get here because my younger daughter was expecting twins and could go into labour at any time. The twins are now 1 yr and need shoes - another thread.

I didn't want to come here Theo's weekend because my granddaughter has been in hospital recently because of this strange nine day headache. In the last five days she has seen the GP a paediatrician and an optician. None of whom seem to think this is serious. Where's the trust? None of them seemed to have believed myself or my daughter. I'm 3 hours away. There's no one to look after my daughter's other children.

We're supposed to be home Monday. My brain damaged husband thinks our granddaughter has migraine as that's what the paediatrician said in the early hours of Friday morning.

I love my children. I love my grandchildren. I love my husband ( who is not the same person I married since his surgery).

I do not lie.

I have relied heavily on the support from lovely mumsnetters over the last couple of years and the vast majority are supportive and helpful and wonderful.

Is don't know who reported your comment.

But other mumsnetters - she called me a liar.

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.

Daphnis156 · 26/11/2023 14:28

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

Original poster
MyOtherCarIsAPorsche · 26/11/2023 14:23

VitoCorleoneOfMNMafia · 26/11/2023 13:20

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?

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.

OP posts:
Original poster
MyOtherCarIsAPorsche · 26/11/2023 14:10

@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.

OP posts:
VitoCorleoneOfMNMafia · 26/11/2023 13:20

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?

MotherEarthisaTerf · 26/11/2023 12:44

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. Sad

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

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