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!)

can anyone help. my son was bluelighted last week to hospital he is 30 months old history of chest infections and asthma and was on brown inlaher 4 puffs daily 100mg each puff and blue inhaler whenever. Last week his breathing rate went upto 60 and he was really struggling. His pattern is always the same- every 2/3 weeks he starts with a cough and a temperature then during the NIGHT he rapidly declines, struggling, panting and breaths per minute go up to 45-60. then come monrng he improves, copes ok through the day then rapidly declines at night. this was true at hospital. we were discharged after 24 hours being told his sats were ok and he had a nasty chest infection- we get home he goes to bed then deteriorates and is blue lighted again. Picke dup next day, runnning around then night came and oxgen levels dropped to 82%.

We returned home last night. with new white inhaler which does seem to work, strong antibiotics, mono? chewable tablets and care plan.
My partner during the time we were in has stripped the bedroom of carpet and we are awaiting lino/vinyl type being fitted, am about to order dust mite protective sheets? pillowcase things etc.
what else can i do?

I love - any chance of getting the consultant appointment brought forward? Or a phone consultation?

Mumto - hopefully the new meds will help, until this week the montesculat has made a massive difference to Ds.

After seeing the consultant last Monday and him being happy with everything at last Ds has now been rushed to a and e twice in the last week. Last night had a bad asthma attack home now on 10 puffs of ventolin 4 hourly. They don't want to give more steroids as he has had 3 courses in 4 months so it's now a waiting game and if he has to go back then they will give him them and bring forward his next appointment to review his meds again!

sirzy .

Good idea. Just spoke to consultant's secretary and she said she would call me back after she had discussed with him. Looks like we're in the same boat of steroids etc, and treating the acute asthma. Today is DD1's first full day back at school since the GP called the ambulance . It's been a month but am still traumatized mainly as she has silent asthma...

Hopefully you get some answers. Hope her day at school goes well

Ohh, my son has had quite a few courses of steroids since christmas- how many shouls/shouldnt he have? has just finished a course of 3 days but had a 5 day curse probably 3 weeks ago and same 3 weeks before that...

mum it's an indication that asthma isn't under control when it's being 'treated' on an acute basis rather than by preventers and Singulair.

What I find really frustrating is that there is no coordination between the GP and Children's Hospital. I've been asked how many courses of steroids DD1 has had in past 3 months. I can't remember! Why can't the GP's records be accessed by the consultant

mum there have been periods when Ds has had more than he has had recently. I think this is just a case of it not being as obvious he needs them so waiting to ensure its necessary as he has had so many if that makes sense!

So far he is doing well with 5-8 puffs every 4 hours. Overnight tonight will be his big test.

I love - how did DD get on at school with the full days?

my son is improving the white inhaler seems to work whereas the blue one doesn't seem to have any affect anymore?
can anyone recommend bed linen that is dust mite proof and covers the entire mattress (mattress goes in it?) also for double bed as we cosleep and will continue for sometime.

Can I join in, having a nightmare again with dt2 he's had 2 admissions in the last 2 months, with viral asthma, basically he's fine until he gets a cold then goes straight to his chest and breaths very rapidly and goes pale etc.
Took in to gp again today, after 2 days of rapid breathing, he 's got a chest infection, and and steroids again and 10 puffs of ventolin every four hours. His sats were 95 at the gp.
Anyway as always seems to be the case at night he's worse now with his sats hovering around 89. His breath rate is about 40 so not too bad. He's fast asleep really don't want to drag him to out of hours, but worried about his low sats.

sirzy thanks for asking. She's been quite tired, so pleased that her school is a polling station so she's at home today. Hopefully we will get an appointment with her consultant in the next week. His secretary is lovely, but she cannot seem to grab ahold of him. I've emailed him, so fingers crossed he will see her either at the end of his clinic or in his office. How's your DS?

Ds was doing well until this afternoon. A trip to the gp has ended up with an overnight stay on kids ward. Hopefully home tomorrow!

Well we got home last night, if he doesn't start sounding better we will be going back this morning :(

Sirzy, we've been in since Wednesday night too, still on 2 hourly nebs, but on oxygen when tired or sleeping, think we'll be here for the weekend.

We just managed to avoid oxygen thankfully. I don't think he would have cooperated with that as well as he did when younger! Hope your Ds gets home soon.

Ds is just curled up on his seat feeling sorry for himself :( they are talking about possibly needing to start him on a long term course of pred which I'm not sure about but we will have to wait and see what happens in the next few months!

Ah bless him :( how old is he?
Dt2 is on third lot of pred in 8 weeks.

2.5 been in and out since he was 8 weeks old so all the staff know him well and he actually likes being there which helps lol!

Must be hard being in with one twin with the other at home. How old is he?

He's 2.10 they really miss each other when apart, dt1 more than dt2 as dt1 is the shy one.
Dt2 has only in the last 6 months had problems, and only when he gets a cold, just very quickly has breathing problems, they are saying viral asthma and have started him on a preventative inhalour now.
He doesn't really wheeze though just sounds chesty, and then starts breathing very fast.
Dt2 likes the playroom but hates been stuck in the bed on oxygen.

Hopefully the preventor kicks in soon and he doesn't have as many problems!

The play rooms are great fun!

large DD1 was the same; they refused to use the 'a' (asthma) word, but eventually put her on preventers and then it was a matter of getting the right combination. She's now on Singulair, Seretide and Ventolin (as needed). Up until a month ago, I was a bit smug that her asthma was under control, but we're getting there.

sirzy hope DS is on the mend and goes home soon

How's this for aaaarrrrgggghhhh? Right, after the blue light ambulance trip to Children's Hospital before Easter, I called the asthma nurse at Children's Hospital. Told her not the 26th as we were away that week. She said she would ask for an appointment not for the 26th. So, we get back from holiday and find a letter for an appointment on the 26th .

And to make matters worse, get a letter this morning from our GP saying that as we failed to attend the appointment, only he could reinstate any future consultations . Will sort it out of course and am sure our GP will understand the circumstances, but what a hassle.

Hope everyone else is OK

Oh no. Hope you get an appointment sorted quickly.

Ds is slightly brighter this afternoon so hoping we have come out the otherside of this attack. The registrar has arranged for his next appointment to be brought forward to do they can keep an eye on things.

Hate hate hate asthma ds2 has had such a rough time lately saw the consultant on Wednesday and he took bloods did a chest X-ray ECG and booked him in for a repeat sleep study as he thinks ds2 needs his tonsils out but we will see what the results are x

I know that feeling Ali, I also hate the way people assume its mild and a few puffs of inhaler and all is sorted!

Hopefully if your DS does need his tonsils out it makes a big difference for him x

HI, Sorry to see that people are having a bad patch.
Ds has been having a really rough time of it.He went to GOSH to see the gastric drs and they have said they think he is allergic to soya as well as everything else. He had to have a neb and pred whilst he was there as his chest was sucking in and he was very wheezy. He has carried on not being great since. School are refusing to give him ventolin and when he was sent home last week he was sitting in the office wheezing away and had had nothing. Does anyone know if they are allowed to do that. I am having to go in to school to give it to him during the day / before PE. Even though they have got a letter from GOSH saying that he needs it.
Rant over any one got any ideas.

That's awful of the school. What reason have they given for not giving it? Is he old enough to be shown how to do it himself reliably?