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.

@MyOtherCarIsAPorsche I can’t recall if she’s had a proper MRI/CT recently. You mentioned she’d had one which found the paranasal growth.

I saw this story on Sky News which made me think of you and your poor DGD. You’re doing the right thing to keep pushing for the care and investigations. Good luck

https://news.sky.com/story/girl-was-seen-30-times-by-medics-over-three-years-before-brain-tumour-diagnosis-13130831

@MyOtherCarIsAPorsche how are you and your family? Is your granddaughter any better?

I do think of you all and the pressure you have been under. You seem such a close and loving family x

@MuchuseasaChocolateTeapot

Thank you so much for asking.

We're plodding on.

Granddaughter is waiting for next MRI - no appointment yet. She's taking a tablet to prevent migraines which does not help her pain and she has developed a reaction to ibuprofen so can only have calpol now. Still has pain every single day. Some days she can't stand up, but thankfully that's probably once a month.

Her brother has been diagnosed with ARFID. He appears thinner with age - he has a lot of other sensory issues. He's 4. He has three safe foods.

Her other brother lost his speech due to quite a large seizure recently - he's 3. He's waiting for a 5 day admission for eeg.

I have another granddaughter who is 4 and is waiting for test results to determine which lung condition she has - it's either PCD or obliterans.

H just found out yesterday that his friend has died. His friend rang him a week ago to ask what his symptoms were when he had to have surgery for aortic dissection type A. (Burning sensation in his back.) H told him to go straight to A&E. He went but came home after waiting for 9 hours (ecg was done in triage) - he made an appointment to see his GP and the appointment was in two weeks.

We're having a huge birthday party for granddaughter today (birthday was during the week). I've loads to do but can't get motivated. The thought of all the guests just makes me want to hide.

There's a ton of fruit to prepare for my 'famous' fresh fruit salad which is tedious beyond belief.

I refuse to tell them all my secret but there's often arguments over who takes home any leftovers.

I was hoping you were all having a better time, I’m so sorry for all your family are going through. When one of my children are struggling I find it all consuming so you must be like a headless chicken. I am still stunned that no consultant has taken you all on as a cohesive group and you aren’t getting more help. Please take care of yourself, you’re too important to them all.

I also want your recipe for fruit salad 😀.
God bless and please let us know if you get any news x

@MuchuseasaChocolateTeapot
The secret is sugar syrup.

I think that they assume that it's a healthy desert because it looks healthy.

They've I idea how much sugar is in it.

It's an infrequent indulgence so I count it as calorie free

so was the mri eventually done?

No she's still waiting for 2nd MRI.

Been told it will be after Christmas.

Pain was slightly better in July and August (thought she'd turned a corner) but has ramped up again since September. We've been told that this is because viruses will be causing more inflammation in the sinus area. Granddaughter has started to bash/press her forehead against hard surfaces as she says it makes her feel better. She permanently carries a sick bowl around with her.

We got frustrated with waiting for her ASD assessment and paid for her to be assessed privately - some assessments have been carried out and she see's EP in a couple of weeks.

We were told that grandsons tonsillectomy/grommets would be by August at the latest - still waiting for that. His seizures are much worse/more frequent when he has tonsillitis - which seems to be every month from September onwards.

My other granddaughter who is 4 years old has had PCD diagnosis confirmed - she's been following a CF protocol this year as an earlier CT scan had indicated severe and permanent lung damage. She missed the first week of school (reception) as she was in hospital for two weeks to have a bronchoscopy and IV antibiotics. She developed a temperature and worsening symptoms a couple of days after being home from hospital and is still on daily antibiotics now.

Interestingly, the PCD consultant has told us to tell my older granddaughter's consultant about the PCD diagnosis as some people can have PCD and just have symptoms in the sinus areas. When my daughter told the consultant this, he said that it was too rare and dismissed the idea.

But some good news is that, due to the PCD diagnosis - her immediate family is having genome sequencing done and the wider family are waiting for the forms in order to get tested. All the grandchildren will eventually be tested as they know which specific genes to look for. Also parents/grandparents will eventually be tested to compare the genes.

Oh goodness OP your family really are going though it! Hope the genome sequencing may provide answers....

Wishing all the best to you all! xx

OP, is your daughter getting support with education support for the children? It sounds like they all need more support in school and may need EHCPs. SOS SEN could help.