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.

@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.

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

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

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

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.

@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

@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.

That all seems a bit more positive.

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.

It kills me.

I can't bear thinking about my daughter going home to an empty house. Relentlessly alone.

She's here most days, but is alone every evening/night. I resent being asked to do anything that will take me away from our usual routine as that means she's alone longer. My husband resents me spending so much time with them.

Who will help when I'm dead?

I don't want to ever have to leave those beautiful souls.

Autism can be isolating.

She is truly a fantastic mum, organising days out, birthdays, treats. Her house is immaculate - after the children are in bed. She's saving for a trip to Disney in America for when the children are older and will be able to remember - but I've already put funds aside for that when she wants to go.

I wonder if the NHS takes into account the effects of fighting for your children (health and education) has on a family's overall well-being?

It's incessantly overwhelming. She's not waving but drowning - Stevie Smith.

I’m glad some positive things are happening OP although it still seems like you have had to fight so hard just to get that.

Are the paediatricians (or even their GP or school) aware that all 3 seem to have neurological issues? As far as I know the conditions you have mentioned that run in your family don’t cause head pain, speech impairment and epilepsy, it seems like it must be more than a co-incidence (to me at least). If they were looked at as a family perhaps the doctors could consider a link, or at the very least it could trigger some additional support or benefits for your daughter?

God bless, I really feel for you all and I hope things improve for you very soon x

I wonder if the NHS takes into account the effects of fighting for your children (health and education) has on a family's overall well-being?

all if mine have considerable additional needs and no, the NHS, social services etc do not want to know. they operate in silos. Ironically, DCs complete breakdown and mental health issues have been largely caused by the difficulties of a sibling. A lot of pain could have been avoided if we would have given support when we had been begging for it. I suppose it's cheaper to throw families like ours under the bus. Most don't fall apart. We were just unlucky that ours did with rather devastating consequences.

I don't think that any department in a hospital look at 'the whole person', never mind the whole family. My daughter is under musculoskeletal, cardiology, endocrinology and gastro doctors currently.

When my daughter's middle child saw a paediatrician because his range of foods is so limited (toast) he was shocked that he had never seen a speech and language therapist. He's almost four (in two weeks) and has unintelligible speech. (Monotone, robotic, three types of stammer - sounds like a dalek.). When he passes people in the street he will greet them with a blunt and factual description spontaneously - hello sad old man on a scooter, hello old lady with an angry dog, hello dirty boy with a loud voice. Thank goodness they can't understand him. Most of what he says sounds complete gobbledegook. He 'speaks' incessantly, repeating everything ad infinitum until you decipher what he's trying to say or he bursts into tears of frustration. The school sent an email home last Friday because a child in nursery is being called names and the words bullying and differences was mentioned. It is my grandson being picked on - we didn't realise it happened inside nursery but we've heard it at drop off and pick up. 'Freak' and 'dalek' are words that have obviously come from parents for their children to repeat. None of us have complained to school about name calling, so it must have been quite bad for the email to be sent out to all nursery parents. We realise that children can be excellent at pointing out 'differences'. We're concerned because he's learned to speak this way and it could become a permanent impediment and impossible to 'unlearn'. He's had four hearing tests along the way - no problems there.

We told the paediatrician that there were problems with his older sister and younger brother and the reply was 'interesting'. Every doctor we've seen with the grandchildren has been told of sibling issues and we don't think they join the dots.

@need2findwork

We're at the beginning of a very long journey. A developmental consultant referred my daughter to Early Help in the summer. She breezes in and out briefly checking in with my daughter every two weeks or so. She has no idea - we now call her the Early No Help lady. She's a lovely woman and she's probably as frustrated as we are that there's a lack of appointments and a general feeling of 'we don't want to be bothered with you' from the NHS and educational establishments but she's actually done zero in terms of 'help' for my daughter. She actually thinks that my daughter is 'well off' in the help department because she's got me.

My heart aches for those who are actually all alone and going through this never ending struggle.

Has your granddaughter had her scan yet? I've been checking in but I can't find the date of it - I just recall it being in January.

Yes - scan was done last Thursday. A bit of a kerfuffle but completed.

Yesterday, her mum got an appointment to see the consultant on 14th Feb - so we're assuming no news is good news as, if it was more serious we would have been contacted before now.

Her brother started at nursery on Wednesday and has had four seizures since starting - which isn't good.

My younger daughter's oldest child (3 years) has been diagnosed with a significant hernia (last week). It's related to scar tissue from
being born with duodenal atresia. She has homogeneous opacity in both lungs and is having a salt test in a couple of weeks. (She has had a persistent cough from birth which has been treated with antibiotics over the years but was significantly worse over Christmas.)

It never rains ...

That does sound like pretty good news after last week's scan, but obviously not for your little grandson and his seizures. I hope the salt test goes well. Keep putting one foot in front of another in the meantime. Thinking of you.

Results today - benign paranasal sinus tumour.

It's affected her eyes - waiting for further eye tests.

Explains pain when moving eyes, droopy eyelid and different sized pupils.

@MyOtherCarIsAPorsche I'm glad it's benign, but I really hope that they learn from this.

So glad you have a diagnosis and that it’s benign.

I do think you should write to the GP to ensure they don’t make this mistake again. What if it had been malignant?

So glad to hear that you finally have answers and what a relief that the tumour is benign. Awful thought that you had to push and push for this, hopefully they learn something from this.

So glad you've got an answer at last but sorry to hear it's a tumour albeit benign. Will they be removing it?

@Lougle

My other granddaughter's salt test came back negative so they have ruled out CF.

They now think it's more likely to be PCD as they have now realised that when her duodenal atresia was fixed (before she was 12 hrs old) that her organs were transposed, which is a sign for PCD.

She has to have her hospital eye tests done first as they think something can be pressing on nerves?

The droopy eyelid and unequal pupil size is intermittent. She's since started with nose bleeds which could also be part of her symptoms.

She goes back to see the consultant in April.

Could be the beginning of a long journey. It doesn't appear to be time critical - thank goodness.

Coincidentally - CAHMS rang my daughter just after today's appointment (she was driving home) they said that they'd seen the MRI result and have brought her autism assessments forwards (they've arranged an initial video consult for tomorrow). Sort of doesn't make sense but she's been waiting for assessment for 2 and half years. So that's another positive.

Thank god you finally have an answer! If and when you feel ready, I'd suggest putting in formal complaints to all the medical professionals that fobbed you all off for so long.