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!)

I've just put a post on the Children's Health board here Can you give me a 'Your Child Has Asthma 101'? and then saw this asthma thread, so I though I'd be cheeky and ask if any of you can help too.

left my DD was the same; initially she only got asthma when she was ill, which they referred to as, 'asymptomatic asthma.' But then she would always get a chest infection and difficult to know where the asthma started and where the chest infection ended. After several trips to A & E, I asked for her to be referred to the respiratory consultant even though she had been diagnosed as asthmatic.

Seems to me that you need a Care Plan. Is there an asthma nurse attached to your GP surgery?

How is everyone doing?
We have finally got a respiratory referral after 2 blue light admissions in the last month. Ds is on week 5 of antibiotics and starting with ANOTHER bloody cold so we are bracing ourselves for another admission this week. The antibiotics don't really seem to be making much difference tbh.
I hope the fact this thread has gone quiet means everyone else is ok?

Hi knacked hope you get some answers from the referral.
DS went to Great Ormond Street last week and is now on seritde as well as the montelukast. He had another xray done which showed some shadowing which they think is scarring from the phemionia, and not another infection,. He is doing OK at the moment but is still getting very tried and bad tempered, and needing ventolin at school before play time and PE
hope everyone else is ok

My friend is a paed at gosh ced, it's is good that you go there. Has your son had many xrays? I've lost count of the number my son has had and have put a stop to them now. They are blindly ordered by junior doctors on every admission and make no difference to his management ( not sure they even get looked at tbh).
hope your ds picks up with new meds.

Yes he has had a few same as you on every admission.

sorry pressed post to soon he saw DR Suri at GOSH. They have had to put a stop on the ammount he has as well but as it was an new pead they wanted to see and check there was no infection left.

Our hospital are great with x rays and only do them if really needed. He has still had about 5 of them but compared to the amount he could have had its low. Only when he has been really bad they do them.

cedmonds welcome to the Seretide club . DD1 is on Seretide 125 and it really has made a difference in conjunction with Singulair. She also gets 6 puffs of Ventolin every lunch period.

When I tried to reduce her Seretide, she developed night coughing a few days later, and the consultant said not to reduce for the moment. She gets measured every appointment as steroids can affect growth, but fortunately hasn't

Am having difficulties managing her asthma at school as the teachers don't recognize the signs, so am seeing the asthma nurse at Children's Hospital next week to discuss.

ilove sorry you are having a hard time i didnt want ds to be put on seretide but he couldnt carry on how he was. Have you got a school nurse that you could talk to ours has been really helpfull with ds. He has got a fantastic teacher this year who is great about him having meds at school and is over cautious about his asthma, which is what i would prefer rather than last year.
DS is also measured ever appointment and he is tall for his age, but very skinny.

cedmonds I know what you mean about the reluctance re: Seretide. DD1's consultant though pointed out that it was less steroids if it prevented her having to have pred, which had been needing fairly regularly.

The school nurse situation. There is a community school nurse who is scheduled at some stage to train all the Year 1 staff who come into contact with DD1. There isn't a nurse at school, unfortunately, so will mean the teacher is responsible. Seems a huge burden as she has 29 other children to look after (with an assistant...)

How is everyone else doing?

We got the reminder for flu vaccinations. Anyone else doing them?

Ds had his flu jab a few weeks back.

Ds had his flu jab end of sept.
ilove i know what you mean about it being a burden on the teacher. Luckly Ds is in a small class which a teacher and t a. The school nurse which like you is a commuity nurse . I had a meeting with her about ds today and re doing the asthma trainning with the staff. I was a bit when ds came home and said that a teenager helping had given ds his ventolin at school. I think she is first year sixth form but even so it shouldn't be given medication to children.
Hope everyone else is ok?

Hmm Ds is wheezy and clingy today, but still going off happily playing at other times. Started the ventolin and fingers crossed he hasn't got something brewing.

Fingers crossed too Sirzy. Sometimes I think it's the feeling of dread rather than the actual illness that's worse.
We've just got out of hospital with ds. I think this is our 4th admission since I started this thread. This time both the ED and paed consultant oncall today have promised to personally chase the respiratory referral and he is now on his 10th course of pred in as many months.
I am exhausted, I had to sleep in my clothes on a plastic chair, the facilities are just shocking for parents and children at our hospital.

Your right about the feeling of dread, probably not helped by the fact it's 12 months this week since we spent 8 days in with pneumonia.

Hope you get a refferal sorted soon, is there not another hospital you can go to?

I am lucky our peads unit is fantastic and really look after parents aswell as children.

Just checking in here for first time as ds2 (3) is in hospital with asthma and beginning to become a more regular concern. i posted in chat last night, www.mumsnet.com/Talk/_chat/1350662-ds-gone-to-hospital-with-asthma-and-i-cant-go-any-experienced-parents-of-asthma-sufferers-out-there?msgid=28667545#28667545

Feeling really useless as can't get hold of dp to see how my ds is. I don't think he has it too severe but also not sure how concerned I should be going forward. He doesn't seem to be an allergic (is atopic the word?) child but he has never had a cough that hasnt gone to his chest. As it seems to be illness related I am unsure if i should be looking at issues like dust, home environment or if that is irrelevant. Any great sources of information out there?

Hello everyone .

Haven't been on MN much lately as DD has been very sickly again the last few weeks :( She has croup . Can't seem to get over this dose , she also has throat & ear infections so her temp has been up a lot the last 3 weeks . Ds also has croup now . I am sooo worried heading into this winter , the weather here(Ireland) is still quite mild ATM , dreading when the snow and ice hit .

Sorry to see your little one's are not doing too good either x

I am too tired to give advice (ds has severe hand foot and mouth for the 2nd time in 6 months, probably picked up in hospital last week while on pred) but just wanted to say hang in there everyone.
Tis a shit time but must surely pass.....

Oh Knackered poor you and your Ds [hugs] x

brambly hedge
Dr will not usually say it is asthma untill they are older. This is because all the tubes are smaller and this can cause viral wheeze. If he only gets asthma like symptoms when he is ill it may well be that not that i am a Dr or anything.
What inhalers has he been given? Are they going to refer him to peads?
If you think it is from dust etc you should wash bedding at 60c. You can also put any cuddly toys in the freezer overnight.

DS has had more phemionia but got over it reasonably well for him. He is back at school this week and has just got back from football and only had two puffs of ventolin so i think the seretide is working.

Hi cedmonds. You are right, they have always said viral wheeze, nudge wink probably asthma but not putting it in writing. So hopefully it might just be viral wheeze but it has always been strongly suggested it is asthma. He just has a blue inhaler and has been given a three day course of steroids. Been told to go to gp and discuss at some point. He has never had a cold or cough which hasnt gone to his chest and has been in hospital 3 times with this. I am hoping he does grow put pf it and it does end up just being wheeze.

Hope your son is feeling better.

How long do these attacks usually last. Ds first went into a and e on Wednesday night. he then returned Thursday night and was given pink steroids for three days and sent home next morning. he ha had regular inhaleraler since and is a bit up and down. he is still wheezing and has recession. not sure if i should just continue with inhaler or see gp. i probably will bit having got dp in bed fo 5th day in row, dd 9m at ood last night with bronchiolitus i am losing perspective