Can we start a new asthma support thread now dreaded winter season is looming?

[Knackeredmother]

Hi,
I can't seem to find the old support thread. I lurked on it during many long, lonely and frightening nights and admissions with ds over the past year and a half.
My ds is 21 months now, was hospitalized at 8 weeks severe bronchiolitis (really thought he would die) then every 3-4 weeks since whenever he gets a cold. No symptoms in between colds but a wet, crackly chest with some wheeze with every cold. Plus of course the dreaded tracheal tug and sternal recession that heralds an admission.
It is all so bloody draining and heartbreaking!
We are just starting with a new bout today after a whole 8 weeks of being well. I am debating whether to call in sick for my nightshift tonight or leave poor hubby with an inevitable hospital admission AND our 4 year old!
Anyway, would be good to hear from others going through similar so we can all support each other ( or direct me to the original support thread!)

Ds is 3 in two weeks. Like your son it started with bronchiolitis when he was tiny which was the scariest 10 days ever and then his lungs haven't been right. He has a section of his right lung which is constantly shadowed which apparently will never work right. Thankfully he has a fantastic consultant who keeps jiggling his medicine to find the right combinations!

It's must be really hard when he's so little Sirzy. I'm glad your consultant is so good. my DS was 18 months when he first had pneumonia and then we had problems seemingly all the time until he was4 or 5. Once he was a bit bigger and they got he medicine right it did make a big difference, although I did still panic every time he got a cold. It doesn't seem to get as bad now as I know what to look for and so does he. also, he can monitor it with a peak flow meter now he's older. Hopefully that will be the case with your ds. i can remember when ds was little wondering just how i was going to stay sane with the level of worry i had but it did lessen for me as he got older so hopefully it will for you too.

Do all your children have consultants?
DS is seen by the asthma nurse and/or GP as necessary, he's never been referred anywhere for his asthma.
Somebody told me a tip for nighttime coughing yesterday, put some vicks rub on feet and then put socks on about 20 minutes before bed. It apparently works for them and they are prone to chesty coughs. DS won't let me try it as it irritates his skin.
DS coughs in bed every night and on and off during the day, though the asthma nurse doesn't seem to think it is a problem.

My DS has a consultant, but he has had 11 hospital admissions and he was only 2 last week
Is he on a preventer as well as reliever?

Hi shel, hope your DS is ok with his jab coming up, DS has never been offered the flu jab, I'm going to follow that one up!

Yes, plus singulair.
My DS has had the flu jab.

Ds has been under a consultant for ages but I think that's because of the severity or his problems

No Dizzy ds doesn't see consultant any more. He was seen by one regularly when he was little because he kept being admitted into hospital with chest problems like pneumonia and bronchiolitis. Eventually he was diagnosed with asthma and had a few more hospital admissions. once he stopped being admitted to hospital we were discharged from the consultant and now see the asthma nurse. It was her who recommended itat ds should have flu jab because of as hist asthma.
Thanks lolli. DS had the jab this morning and seems to be ok so far.

Just been to see the consultant. He has changed the serevent and clenil to seritide to see if that works better and given him cirtrizine (sp) to help with the allergy side of it.

Got to have bloods done in a few weeks to see exactly what allergens are a problem.

That's the same meds ds1 is on. Hopefully they will work for your little man too. I've spent the day chasing consultants to speak to them about ds2 but it's a nightmare keep missing calls.

Hope you manage to get hold of them soon!

Alli its a nightmare when that happens sirzy hope that makes a difference it has for ds. Although he was changed from certizine to loradatine.He has had his singular increased as well which seems to be helping.
DS has been under a consultant since he was a baby and he is now at GOSH and has a local consultant so he is seen every 3 months between them

DD1 (6) has a paediatric respiratory consultant and we see him every 3 - 4 months. She also sees the asthma nurse at Children's Hospital, although would much prefer to see the asthma nurse at our local GP as she's quite good.

DD1 has her flu vaccine last week and almost immediately developed mild flu symptoms. Weird.

Our hospital have outsourced their pharmacy. Now you can't just go and pick up your prescription at the hospital you take it to a desk and are given 3 choices - pick it up from the neighbouring hospital (10 miles away in the opposite direction to home), pick it up from a local pharmacy 48 hours later or have it delivered to your home that afternoon.

We picked to have it delivered to home... still waiting for it and out all day tomorrow so god knows when we will manage to get our hands on the medicine.

Letter of complaint being composed already!

Well its just arrived, in a bag stinking of cigarette smoke!

sirzy wow, that's crazy! I've never understood why hospital pharmacies can't be open 24/7. DD1 once was discharged from Children's Hospital at night, and had a prescription to be filled. As the hospital pharmacy was closed, despite being given the medication on the ward, had to locate an out of hours pharmacy

Pharmacies seem to have the daftest systems ever and take hours to do anything it would seem. Everytime we are ready for discharge we end up waiting hours for them to get sorted!

I feel for all of you my ds was the same, spent his first 3 Christmas' in hospital but at 4 was put on montelukast tablets and for the past 2 years we've managed to control it at home, he's now a sturdy 7yo! Take the time off, keep yourself strong and it will improve xxx (((hugs)))

My DP is a pharmacist, the waiting times are rubbish because the trust prefer to employ less qualified staff to do the donkey work but the final prescription still has be checked by a pharmacist of which they try to employ the bare minimum. Pharmacy is first place they try to cut back and save money so definitely no chance of a 24 hr pharmacy in an nhs hospital, but they might have one oncall pharmacist to cover the wards in an emergency like running out of stock. It'll only get worse, expect any brand name meds to be switched to cheap generics whether you like it or not, patient choice is going out of the window.

Finally got hold of the consultants secretary one is on annual leave but will book him in for a pre op assessment with regards to having tonsils and adenoids out and his asthma consultant is ringing me back today. Phew it was hard going
Ds2 has a temp of 39 again today and a very croupy sounding cough I honestly think this is the worse start to winter I've ever had

Hi.
DD has her asthma check this week, and I am not happy with the advice from the new respiritory nurse. I asked, as advised by cedmonds, for an action plan for both me and school. I explained what I am worried about, how long should I allow DD to go on coughing for, how many extra doses of ventolin should she have, how often, when to consider taking her to hospital for further treatment.

The nurse looked at me gone out, said there would be no need for hospital. She said that I need to control her symptoms better, give her Lemsip when she has a cold, DD is 7! The nurse said that as DD's asthma is triggered when she has a cold, controlling this is the key to controlling the asthma

I asked about using Ibuprofen for her stubborn temperature, as when she gets hotter, she coughs more. The nurse advised against this, and then said that if her temp is stubborn to get down then to give DD an aspirin!!

I did question this, as I know that this aspirin is not ok for children, but the nurse assured that this would be ok.

I'm sorry if I sound too sceptical, but the nurse's manner did nothing to give me any confidence in her.
I know I sound like the neurotic mother that I am, but I need to have faith in the people who I will no doubt be in regular contact with re DD.

I am considering making an appt with the GP and explain my concerns. Is this the right thing to do?

definitely not neurotic. You are asking for advice about your DD's asthma and quite reasonably are asking when does it become an emergency, what are the signs, how do I know, what do I do? etc.

She really shouldn't have dismissed your concerns but discussed them with you, so yes, make an appointment with a GP who can discuss it with you.

There will be a stage when you can recognise the signs, and DD1's respiratory consultant did comment once that asthma is, 'more art than science...'

I would certainly chase that up with the doctor. I would also check what she said about asprin as I am sure that its not recommended for under 16s if that is the case I would put in an official complaint as that is pretty dangerous advice to be giving out.

DS has a cold brewing at the moment and has been very out of sorts today. I was hoping we would get a bit longer before his new medication was tested out with illness!

I would certainly make an appt with your gp and raise your concerns!

Sirzy how is DS today? DS has been on seritide for about 8 weeks now, he has a terrible cough and cold at the mo but his breathing is really stable! Which is VERY unusual for him! I don't want to get my hopes up too soon but I think it's actually working!!

That's good :)

TMI but he has an awful stomach and has come out in hives not sure if it's a reaction to egg (he has just started eating boiled egg in the past few days) or the anti histamine.

His chest doesn't seem too bad though which is good

Aw bless him he is having allergy tests soon isn't he?