So worried about Gt Granddaughter

? Pay for a private consultation?

I’m sorry I have no experience of this but can only suggest that, if she’s being treated at a general hospital, her parents insist on a referral to a specialist children’s one. If you’re in the uk PALS may be able to help with this. Are they getting any support from the health visitor attached to the GP practice?

“The medics just say shes unlucky and will grow out of it, and just don't seem interested to find out WHY she gets so poorly.”

And this ☝️☝️is why her parents should be pushing for further investigations. If she were mine I’d want her to see a Consultant in Respiratory Medicine as soon as possible but to be honest, give the time frame, I am surprised A & E haven’t instigated this by now.

I agree that she needs more investigation but just a word of encouragement I had two of my grandkids have traumatic early childhood medical events one with ‘asthma’ (so frightening) and one with skin allergies, at one point whole body red raw and every cream made it worse both hospitalised more than once both ‘grew out’ of their medical problems and are very beautiful, strong, adults with no chest or skin problems

However that doesn’t answer the problem of the moment get the parents to push for more answers, to help through this period, but do take hope on board that she will all being well grow out if it

Could someone afford a private consultation and subsequent tests? Or ask for referral to a specialist children's hospital? I agree that just unlucky as a diagnosis feels somewhat feeble.

Please encourage the parents to push push push. The NHS is understaffed and mistakes can be made, often is up to families to apply pressure and demand that investigations are made. Saying your great granddaughter is just unlucky is no answer, the fact is she may just be unlucky and grow out of it but in the meantime she needs to see a consultant to rule out anything else.
All the best with this.

As others have said if the parents have the funds to go privately that might be the best way forwards for peace of mind. Who knows how long a waiting list would be for your great granddaughter to be seen on the NHS?

I have an asthmatic GD (11) who has had a couple of hospital admissions but nothing to compare with your GGD. I would definitely be going down the route of a second opinion either privately or an urgent NHS one. My question to her current medics would be if you say she will grow out of it, then what it is she is suffering from? If they haven't investigated why she gets these episodes how do they know she will grow out of it? I found it very distressing to see my GD fighting for breath as I'm sure you do with your GGD. Some people are reluctant to question a doctor but in your shoes I would be seeking a second opinion asap. Good luck.

I hope these new rules are helpful to your family

The medical definition of 'unlucky' means 'We do not know what the problem is but are hoping that if we ignore it, it will go away.

If you can possible afford it, go privately. Otherwise I am sure you have a right to ask for a second opinion from a specialist, one not in A&E

Hi and thank you for your replies. She had a private consultation a year ago but the consultant couldn't access the NHS records so was going on parents history of events. So wasn't a very successful appointment. She is under the care of a respiratory consultant but appointments are constantly cancelled. She had a bronchoscopy whilst ventilated last year and they said lungs looked normal but full of mucus which was suctioned off
Cysyic Fibrosis test was normal Tried a health visitor request for support, but was told "we only see healthy children"! GP worse than useless and not all her admissions discharge notes have been passed to GP! Her Mum is about at her wits end, frightened to send her to nursery in case she picks something up. I am pushing them to ask for a 2nd opinion. Just feel so helpless

One of my DC caught bronchiolitis as a toddler (20 months) and also whooping cough. She had not been vaccinated against whooping cough because there was a big scare about the vaccine at the time. She did have lingering problems for a few years but the GP s did not seem a bit concerned.

She is under the care of a respiratory consultant but appointments are constantly cancelled
The parents must insist that she is seen, if necessary ask to see a different specialist.
It is only recently that I had heard of RSV - Respiratory syncytial virus which is affecting children.

Does she eat well? Does she take vitamins and have they checked her vitamin D levels?
At one time, GPs were advised to prescribe Vitamin D for children as levels can be low in this country but I've never heard of anyone who has been prescribed the vitamin.

I looked up uk paediatric pulmonologists and found this link: The best UK Paediatric Pulmonologists in 2026 | Top Doctors share.google/fYkKdUr0Np6pS658P

Worth a look.
If she does see one of these it us important to garner all the medical history in case they cannot access the notes. Her parents can ask for copies of the discharge notes to the GP which are always a good summary. They can print these put and take them with tgem.

Such a worry!!
Please encourage the parents to chase up the consultants appointment that keeps getting cancelled and try to book a private appointment but ask the parents to make sure the GP knows to forward the relevant records.
I am constantly having to battle to get my DH the attention he needs after a massive stroke just over a year ago so I know how it feels to fight against the constant setbacks with the NHS but we have to be proactive.
Wishing you and your family the very best with this.

Oh my, that must be so hard to watch and it’s completely understandable you’re feeling anxious for her and her parents. It sounds like pushing for that second opinion or specialist referral could really help them get some clarity and support through this scary time. 💛

I can only say that my dd as a young baby / child was constantly on anti biotics for numerous chest infections , terrible coughs, she had pneumonia at 5 months, was always ill.
She did grew out of this slowly but I understand how worrying this is. I hope your gggd recovers. Have the parents requested a second opinion?

I have an idea.
But dont want to out myself.

I will DM the op.
Anyone can DM me if they want.