Another A&E thread

@Poinsettiasarevile

Tell me about it.

I used to moan about inheriting all the crap genes from my parents and now my children (and in future possibly GC) are commenting on the same.

There is autoimmune stuff, EDS, bronchiecstasis, heart disease, stroke, dementia, epilepsy, autism, migraines, allergies.

There's stuff on future son in law's side too numerous to mention.

I've just found out I've got damage to my heart from a possible 'silent heart attack' - that will be from my father's side. I've never smoked and I don't drink alcohol.

My husband has his heart trouble.

We're a walking disaster area.

I'm so worried for my children/grandchildren - which won't help with the amount of stress we're all experiencing.

One daughter (EDS, bowel, bladder, heart problems) is waiting for more hernia surgery. Another daughter (same) just been refused surgery due to EDS (damage after having twins). Same daughter's resting heart rate is over 100 - had tests and results but that wasn't followed up.

And there's the wedding next month.

Could it be any worse? I dread my phone ringing (I jump a mile when it does) in case it's bad news. This last few years have been horrendous.

Was just saying it's a good job I don't drink as I'm frequently called out in the middle of the night/all hours to mind grandchildren when others are rushed to hospital.

Would love to get to the bottom of it all - feel like a bit of a mushroom. Kept in the dark.

Would've been interested to have genetic tests after my daughters were diagnosed with EDS.

We realise we're all on the autism spectrum although only my older daughter is diagnosed.

Sometimes we laugh so much, at the ridiculousness of it, it hurts.

Mostly it just hurts

@Jasmine222

I think they're going to rescan at some point and go from there.

My daughter was told that it was benign and non aggressive.

My granddaughter would not let the consultant come near her. He wanted to feel her cheeks and eyebrows. She wouldn't let him touch her. She screamed the place down.

She allows an optician to get close enough to look in her eyes but we have to plan that day and anticipate what could happen and constantly walk her through potential scenarios.

My daughter couldn't anticipate the consultant touching her face (had no idea of the results, we assumed they were clear because of the length of time between the scan and the consultation) and so couldn't prepare her. She refused to speak to him even though she had been 'tutored'/role played scenarios where she would answer his questions.

Because they think that it could be this affecting her eyes, we have to wait for the eye tests at a different hospital.

She sees the same consultant in April.

@Outnumberedbywillies

My other granddaughter is almost 4. She's not been physically followed up since her surgery at birth. She had a couple of virtual consultations. Surgery happened at the end of the first week of lockdown.

Recently, she has shown symptoms of a hernia which has been confirmed as due to excess scar tissue from the original surgery.

She's had various inhalers which have not helped.

She had an X-ray when she was 2 but this wasn't interpreted because it was blurred. It wasn't repeated.

She's been blue lighted to hospital many times with febrile fits/chest infections/pneumonia/low oxygen levels.

The X-ray this year caused panic stations - the consultant was sure that it was CF - which proved negative.

PCD was mentioned today. My daughter was not aware her daughter's intestines/organs were transposed until today. The surgeon did not inform her.

She's having a CT tomorrow.

She can't lie down for coughing up/vomiting up mucus/choking.

She's had steroids, antibiotics, antihistamines, diet modifications - nothing has helped.

Her lungs are looking quite damaged.

Can't believe it's not been picked up before now. But not surprised.

There's a choice of two hospitals for a diagnosis neither of which are close.

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.

@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.

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.

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 ...

@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.

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.

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.