Another A&E thread

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.

@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

@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.

@Mirabai

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

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?

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.

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.

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.