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.

At long last. You are finally getting some answers. What a difficult time you have had. Here’s hoping and praying that your family will get the right help now.

My 2 and a half year old has PCD. PCD support UK are a fab charity that have loads of advice. Happy to speak via private message if you have any questions as we have been treating him since he was 6 months.

@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.

OP, is this tumor growing though? Because if it is then it needs to be removed urgently even if it's benign. My friend had a benign tumor in her stomach and it needed to be removed because it was growing and at risk of perforating her intestine. This doesnt sound like something that can be left.

Your family has a really extensive medical history. Has whole genome sequencing ever been suggested? This can identify rare genetic aberrations and complex genetic syndromes. Given the extensive family history, i just cant see how there cant be a genetic component.

Any of the consultants involved in your grand daughters care can request it.

More info here https://www.genomicseducation.hee.nhs.uk/supporting-the-nhs-genomic-medicine-service/requesting-whole-genome-sequencing-information-for-clinicians/#:~:text=WGS%20can%20be%20requested%20using,Genomic%20Laboratory%20Hub%20(GLH).

@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.

@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

@MyOtherCarIsAPorsche has your granddaughters tumour been biopsied?

There are 4 centres in England that can diagnose PCD and one in Scotland. They will do a cilia biopsy which involves using a special brush in the nose to collect a sample of the cilia which will be looked at under a special microscope. This along with genetic testing will give a confirmed diagnosis, however there are still mutations being found.

It's really common for patients to be tested for CF before getting a PCD diagnosis, our wee one had 3 sweat tests as they were so certain it was CF. 50% of pcd patients have situs inverus or situs totals (flipped organs). Most aren't affected by this though.

Scarring to the lungs (bronchiectasis) is common, our wee boy has significant scarring. Treatment for us involves antibiotics 3x a week, nebulisers twice a day, airway clearance physio 3 times a day l, nasal rinsing once a day and regular iv antibiotics when he grows bacteria. We do a cough swab everytime he has increased symptoms and this gets tested and a treatment plan in place. Once you get a treatment plan in place it will start to stabilise.

After diagnosis your local hospital will be able to do the routine day to day things and you won't need to travel too much to the pcd centres (once or twice a year). You can claim funding for this.

I know it's a scary journey to begin with, but I promise it gets easier as you settle into your new routine. Ear infections are also common and she should get regular appointments with audiology as hearing loss can also be a problem but most kids grow out of the hearing loss as they get older as it's due to a build up of fluid.

Inbox is always open.

That is curious @MyOtherCarIsAPorsche . I'm surprised that CAMHS would see an MRI report.

Oh OP I am so sorry your family is going through all this. Thinking of you .

@Lougle I have worked in CAMHS and certainly we could see MRI reports. Probably depends on what computer systems are used.

Perhaps I worded it badly. I'm not saying they can't see them. I'm just surprised that they would see them, or act on them so promptly. CAMHS in my area it's a complete mess, so perhaps that is influencing my perspective.

Ah ok! Our camhs was pretty good when I worked there. I do know it depends on area.

CAHMS rang as my daughter was driving home from hospital - two hour drive. Hospital is so far away because it was the hospital with first availability for paediatric appointments.

They have sent her an email link for a virtual face to face, 1 hr appointment tomorrow. I'm taking my grandsons out so that the appointment will be 'quiet'.

We were wondering about why they rang. It's as if they knew the result before we did.

I will tell my daughter to ask them during the appointment (if she remembers).

In January 2023 my daughter got a letter saying that they (CAHMS) would be in touch soon. In the summer last year my daughter got another letter asking if she still wanted her daughter to be on 'the list' - she had to send back a form.

She's not had a phone call from them directly before.

She might genuinely have got to the batch of kids who are near the top of the list and they have seen her MRI and decided that they'll do her assessment.

DD3 has been on the list since November 2022 and I was told in January that she's now in the batch of kids who are near the top of the list, but not close enough to be sent the final questionnaire. Then she'll move into the batch that are sent the final questionnaire, then she'll be in the queue for an appointment.

It makes me laugh when people talk about children being diagnosed with ASD at the drop of a hat. If they knew what a sift and sort process it really was, with so many offloading points and waiting periods, they'd be saying different.

I have no experience or knowledge of this, but just wondered if the consultant could have asked for her to be assessed for ASD as soon as possible due to her not letting him touch her etc.

She's on the waiting list for ASD assessment.

Had a virtual appointment on teams today and she would not answer any questions (open or closed questions) - she sat staring at the lady (which was probably unnerving). There was absolutely no change to her facial expression whatsoever. She sat busily twirling a toy in her hands, staring at the lovely lady. Mum was sat next to her and did not know whether to answer the questions on her daughter's behalf or keep quiet.

The lady on the meeting has said that someone will go to their house and fill a form in with them face to face. They seemed to want the same information which has already been sent. Or perhaps there was additional information wanted which they didn't get up to because she was not engaging.

The email sent with the link for the meeting said to allow an hour for the appointment and it lasted less than 20 min.

The consultant at the hospital said that granddaughter was 'complex' as she had refused to engage with him before and when he tried to take her blood she screamed for the whole time it took to get a blood sample: it took three additional members of staff (plus mum and doctor) to get a sample.

She screams if anyone tries to help her wash/bathe - she won't let anyone touch her. She screams for the duration of brushing her hair and putting it in a pony tail. She won't cooperate at the dentist/gp. She's had eye tests and would not talk to the optician apart from saying the letters of the alphabet and nodding when she could see clearly. Teachers have called her quirky. She just about starts talking to one teacher and then it is the end of year and she gets another teacher. She will not answer questions in class - she speaks to a couple of children and has been in trouble for not wanting those children speak to other children. It has caused upset. The SENCO has described her as 'cold' and 'shut down'. They say she should have social and communication help but we don't this happens.

She will not allow anyone to touch her belongings. Sometimes my dining room table is covered in her things which I am not allowed to move. She's had different 'friends' around who will not come back because she can't bear them to touch anything. If someone does something she does not like she stands and screams. This does not appear to upset her but it upsets everyone around her. If she hurts herself, however small, she asks if she is dying. When she fell during PE at school she asked the teacher if she would die and the teacher laughed. This reaction made her scream until mum could get to school to pick her up. The message mum got was ' Can you please pick up your daughter ASAP as she is hysterical?'

Her teacher told me on the last day of term that she had upset two girls because her 'friend' had wanted another girl to join in with them. She wouldn't allow this and upset the two other girls so much they started crying. She was in trouble for this and just stared at the teacher while the teacher tried to get to the bottom of the squabble. My granddaughter was adamant that it was the other two girls who had tried to get her into trouble. My granddaughter remained detached whereas the other two girls had been crying for the whole of lunchtime.

I told the teacher that she is socially inept and has her own agenda and she's unaware of how upsetting it is to others. The teacher said that she's a master manipulator and knows exactly what she's doing, intentionally hurting others. The teacher said that she's 8 years old and in year three and should know full well that children can have more than one friend. My granddaughter absolutely does not understand this. I reminded the teacher that my granddaughter was not in fact 8 until the end of the school year and she had not read her iep for social and communication difficulties which states that she should have time out once a week with a friend of her choosing to learn how to play/take turns/share. The problem is that no one wants to volunteer to do this with her. She is allowed to go to The Hive when she wants to at break times as she never has anyone to play with. So she goes there to draw pictures.

She has a very dry and mature sense of humour but only close family see that. We spend countless hours anticipating events and recommending how she should react to people to enable her to be more sociable. She listens but doesn't put suggestions into practice. She is a closed book to outsiders.

She thinks differently. She is certainly quirky.

Her mum was selective mute outside of the house until she was 16.

We have suspected that she is autistic for about 6 years.

Another update

My granddaughter finally had an eye appointment at the local hospital on Tuesday (been waiting since last October) - she saw a consultant, and then she saw the consultant paediatrician again yesterday (at the hospital which is a two hour drive away).

They have ruled out any eye problems but she needs yet another increase in prescription - her fourth increase within a year. This means new glasses and new sunglasses - the sunglasses are advised to ease her eye pain - long sighted.

Her symptoms have slightly worsened. She has eye pain (pressure) and headaches daily. She is sick frequently. I cried when she gleefully announced that she was getting used to being sick. She has dizzy spells and double vision often, unequal pupils, droopy eyelid.

The consultant said that the symptoms are wholly due to the moderate benign paranasal disease - even the deterioration in her eyesight. Yesterday she was prescribed a drug to help prevent the headaches which is prescribed for cluster headaches and migraines. It can possibly take upto a month to work and will make her feel nauseous and tired so she has to have it at night.

The consultant kept mentioning that the condition was benign and he must have said that it was definitely not an aggressive form more than a dozen times - to reassure us? But we don't feel reassured.

Waiting for another MRI to see if there's any evidence of growth?

We asked what was the treatment for the benign paranasal growth and he just said 'surgery at some point'.

So no rush.

I could tell that the tablet she took last night (in a mini marsh mallow) had made her worse as she was carrying her 'sick bowl' into school this morning.

She goes back to see the consultant in 3 months.

OP, she needs an operation to remove this tumor asap and if I were you I'd be ringing hospitals and going to hospitals and harrassing her GP nonstop until this is resolved. It's clearly a serious condition that's impacting her day to day life and as the adults in her life you are responsible for making sure she is operated on.

This is so heartbreaking to read. Of course, it's good that it's benign, but this poor little girl is suffering so dreadfully, as are all those who love her. 3 months to see the consultant again? What a dreadful situation. I'm so sorry this is happening.

Hmmm - it seems to have been going on for ages!

No indication of when the next MRI is.

This morning she asked if she could have a treat for being brave (it took three people to hold her down while a fourth put eye drops in on Tuesday). She can't bear anyone touching her - it's too overwhelming.

I said that she could choose the biggest treat .... what have I done?

Tumours can be benign and aggressive though - which means while they don’t invade surrounding tissue and metastasise further afield (as a malignant tumour does) they can still grow.

If it’s causing further problems with sight and ongoing headaches and nausea then surely she needs surgery asap.

If I were you I would ask for a second opinion (which is your right) to ensure that the tumour is not indeed aggressive (ie growing).

@Mirabai

Yes - they've ordered another MRI to see if it's any more extensive.

Excellent.

Surgery “at some point” when this is ruining her life and presumably affecting her education seems unnecessarily vague.