Is there any support for asthmatic children?

[Rachelbloy]

Hi there I'm new to this site so please bare with me.

My daughter is 18 months old and has suffered with chest infections since being 5 weeks, we finally got a diagnoses of asthma and inhalers, currently awaiting on our hospital appointment.
I feel as though my doctor just doesn't listen to me, I've had to fight tooth and nail for all the treatment she's had so far and that's only because I took reinforcements with me to doctors appointments.
My question is, does anyone know if there is support out there for asthmatic children, like support groups that are local to Cleethorpes/Grimsby area, I feel like no one understands, she coughs throughout the night and both of us are exhausted and I'd love to go somewhere where we feel we're being listened too
Thank you in advance

There is a thread on here which is a good support I will find it and bump it up for you.

Do you use the www.asthma.org.uk forums? I've found support on there as well as here.

yes i like the asthma uk ones to

Here is a link to the one on here www.mumsnet.com/Talk/childrens_health/1644194-Wheezing-into-2013-Support-thread-for-parents-of-asthmatics

Thank you guys, ill take a look now, my family are great and understand how I feel which is what's keeping me sane but any other support/advice would be greatly appreciated.

Hi Rachel My DD 17 has had asthma all her life and I can identify with your frustration with the doctor to get a diagnosis. My DD had chest infection after chest infection as a toddler when all the time she had asthma.

How long ago did you get the inhalers? Are you seeing any improvement yet? The preventer inhaler will take about a week to start to work but you should see an improvement with the blue ventolin straight away.

Just a thought - does your surgery have an asthma nurse? You may have to ask, as it may be that the usual nurse who does injections, dressings etc. also runs an asthma clinic. I have had experience of various asthma nurses and some are a lot better than others. What I like about the one we see now is that she has time to listen and try and sort out any problems as the appointments are longer than a normal gp appointment. Just having someone to talk to who hasn't got one eye on the clock and will listen to you can be very reassuring. It might be a good starting place while you wait for your hospital appointment and also you can usually get an appointment more easily with the nurse. After your hospital appointment you can then go to the asthma nurse if you want to discuss anything further.

When my DD was first diagnosed I was so worried and fearful for her - now it is a way of life, but I understand how you must feel.

Hope that helps a little.

Thank you monikar, my DD started to show signs from a couple of months old, she just coughed all the time, runny nose etc, she's been on ventolin for a little over a year and the clenil (brown inhaler) since aug last year, the clenil did help a lot at first but the last couple of months she's getting worse, the ventolin eases her rattling and coughing for a short time but then it starts again. In the beginning I used to be able to pop to see my grandma for an hour (she only lives around the corner) and not take the ventolin but now I daren't go anywhere without it. Every chest infection seems to be worse than the previous one and has had bronchitis recently too.
My doctors surgery does have an asthma nurse but she's not very approachable and she's only interested in asthma checks and not having conversation. It's 3 weeks until her paediatrics appointment but I'm so worried something bad will happen until it arrives. Don't get me wrong she seems well in herself but it doesn't take much walking around or playing until you can hear how out of breath she is.

Oh dear, you sound so worried. Asthma is such a difficult illness.

If the clenil is not keeping her symptoms under control and you need to use the ventolin quite a lot, it may be that DD needs an increased dose of the clenil, which will take a week or so to take effect. Do you think it might be worth asking the gp if he could prescribe this until your paediatric appointment?

At our surgery they say if you need to use ventolin more than twice a week then you need to get it checked. I think this is aimed at adults/teenagers but it shows you what the limits are. I think you would be perfectly within your rights to ask for an increased dose of clenil to see if her symptoms could be better controlled.

A good habit to get into is to always take a ventolin inhaler wherever you go - it just becomes a way of life, like picking up your keys. When you next see the gp it might be an idea to ask for another couple of ventolin - that way you can have a spare one at home and then perhaps another in the car or whatever.

Sorry to hear your asthma nurse is unapproachable - we used to have one at our surgery like that, it was mostly a waste of time seeing her. Is she the only nurse in your practice? I stumbled upon the one we see now by chance - I didn't know she did asthma checks as she was new, but luckily she does.

I know what you mean about DD seeming well, but the least little thing will set her cough off. My DD couldn't even run across a room without coughing. This is why I think she may need some more preventer than she is having.

Just a thought - my DD had asthma 'up her nose' when she was little, as well as on her chest, and a nasal spray from the gp really improved things quite quickly. It was easy to get in as well - I thought I would have difficulty but you just put the nozzle in and squirt and that was it.

If I think of anything else I will let you know.

I've used saline drops and I put eucalyptus oil in her air purifier but nothing really works. We've done the books under the head of the cot, pillows under the mattress, towels of raidiators etc

I took DD back a couple of months ago and saw a doctor I'd never seen before and she upped the clenil from 50mg to 100mg, we used it for a couple of weeks but for other reasons I took her back to the doctor and he wasn't happy that it had been upped so changed it again! Grr!

My DH is also asthmatic and has ventolin and 100mg clenil so there's always inhalers knocking around the house, my eldest DD is almost 6 and she also has ventolin but rarely used and I had childhood asthma 13-19. I think it was inevitable really that one child would bare the brunt.

I know what you mean - I tried everything to try and get DD to stop coughing.

She was prescribed 'Serevent' (a green inhaler) for a while to be used with the brown and the blue inhalers. It works by keeping the airways open for up to 12 hours and really helped DD when she was bad. Your gp might be prepared to give you something like this in addition to the clenil.

At that age DS was on 400mg of clenil alongside motentelukast so there is a lot of room to increase if needed. I would push for that if it helped last time.

Like Moikars daughter he also had serevent for a while with the clenil which worked quite well but the seretide he has now is the best - although neither of them are licensed for under 4s so are a bit of a last resort I think (DS is 3.5 now)

I agree with making sure you have ventolin with you all the time, make it part of your routine - we have inhalers dotted everyone!

I always keep a spare mask and inhaler in my changing bag now.

I'm not convinced my doctor will prescribe something that's not for under 4's when DD is 18 months, he's very to the book which is why everything has been such a fight, he wasn't very happy with referring her coz he believes children should be 2-2.5 years for diagnoses but after camping out at the gp unit he really didn't have a choice, especially after one doctor said "we'll if she's not asthmatic then I don't know what she is".

I can't remember the las time I showered alone as the steam tends to help.

Yes, thinking about it, I think DD was about 5 when she had the serevent - I didn't know there were age restrictions on it.

Would you consider seeing another doctor at your practice? I had a particularly bad time when DD was about 4 and my regular doctor was extremely difficult about giving her anything different to help her coughing. He regularly had Wednesday off if I remember correctly, so I booked to see a different doctor on the next Wednesday. He was much more helpful.

My GP still argues that DS is too young for asthma dispite him being diagnosed by a respiratory consultant at 12 months, I don't think GPs generally understand childhood asthma very well!

Thankfully the up side of his hospital admission was they very quickly took control of his care and he has been under there care from about 8 months old and they are fantastic.

DD has never had what they call an 'attack' but I'm terrirified she will if someone doesn't help me. I hope to god it doesn't take a hospital admission for DD to get the help she needs.

The other doctor I saw who upped the clenil was a lady, very nice but I've only seen her the once and I'm not even sure if she was just a temporary doctor for the day. I think there is just the one doctor at my surgery, but I will enquire. Other wise I would be tempted to move, in fact I know the name of the doctor we saw in the gp unit who very quickly diagnosed asthma and is apparently a very good doctor, it's just that the practise gets a lot of criticism coz you can never get an appointment.

My doctor said that I will never be satisfied with the asthma diagnoses (his words) to which I said yes I am I'm just not happy with how long and hard I've had to fight for things and that he is not an expert in the asthma field and he alone cannot judge what is best for her, which is why she needs a specialist to determine which medicine is best.

GPS have no clue about asthma IMHO.
It wasnt until ds1 was referred to a paed that things got better.
He tried atovent (didn't help), salbutamol (preventer) ventolin (when he was bad) montelukast granules (didn't help) and then a profilactic antibiotic through the winter 7.5mg per week.
That worked and he was able to get though winters without missing tons of school.

OP - are you sure she doesn't have hayfever too? You say the asthma has got worse over the past couple of months and asthma at an early age often goes hand in hand with a generally allergic (atopic) profile. I would maybe a few days of piriton antihistamine syrup and see if that helps.

Plus don't be afraid to increase the brown inhaler back up to 100 if her asthma has been gradually getting worse. The inhaled steroids are so much lower doses than she will need if she has a bad attack and needs prednisolone (oral steroid).

It doesn't sound as if you are getting particularly good care - hoping that your hospital appointment improves things.

An yes forgot about prednisilone! Fab stuff!
Our ds1 was in anti histamines every summer as a younger child....loratidine

DS is on daily citrizine which helps his hayfever too.

Pred always makes DS hyper!

DD has been taking citrizine for almost 3 months and it honestly hasn't made any difference, we were also given simple linctus too which I laughed at but I gave it a go.

I think I may up the clenil and see if it helps, she was only on it 2 weeks before the doctor decided she should never have been given it, I suppose 2 weeks really isn't a lot of time to see if it helps, you just assume that the doctor knows best and if you sway from his advice then your wrong, but my instincts have always been right with DD so ill try it, thank you

It would take about a week to start to work on the new dosage so I agree, it wouldn't really be long enough to have given it a proper go.

I've just taken her to bed and gone through the nightly routine of medicines lol I've given her the 100mg of clenil if I notice a difference by the time her hospital appointment comes round I shall mention it definitely, thank you all for listening and for your advice, I feel a little better knowing I'm not alone in this fight and I hope all your little ones are thriving and well.

I shall keep you updated if she gets better/worse and how the appointment goes :)

Does she have inhalers via a spacer or just a mask?

I have a 22 year old dd with chronic severe asthma, it has been a part of our lives since she was a baby.

She has a mask, there's no problem with her taking them, she's really good and thinks its a game

Well as promised, here's an update on DD.

Friday 18th July's appointment with the paediatrician was cancelled due to the consultant not working in the clinic that day but on the wards instead and rescheduled.

We didn't have to wait because unfortunately on Thursday 18th July my DD had her first attack, we was treated very promptly at hospital and put on a neb at midnight,, once on a ward and settled for the night another neb at 2am then 3am, 4,5 and 6am were 10 puffs of ventolin, then 2 hourly until noon then 4 hourly we was let home the next day.

We saw the consultant on the ward and has been given a 3 day course I'd predisolone and she is now on montelukast (for children 2-5) DD is only 19 months. Scheduled to see the consultant again in September. He was great and I felt listened too, and he understood my frustrations, he was unwilling to diagnose asthma but said when she is at the age he can diagnose or when he sees her in clinic he'll more than likely diagnose.

I cant believe it is all so poor after all these years.
I do know that there is a postcode lottery as regards treatment of asthma. I think it was the BBC news that reported it about 2 months ago.

I was where you were more than 20 years ago, and had hoped things had improved since then. Apparently not! [fwiw, one of mine is no longer on any medication for asthma, so things can improve asthma wise, but it can take many years].

Back then, we were told that a diagnosis is not given until 2 years old, up to then it is called bronchilitis.
Back then, we were also told to stick to one doctor we trusted at the GPs, as they said different doctors were giving us different information [no kidding]. We had about 6 doctors at the surgery, so we stuck with one throughout the next many years.
We were also told to ignore the many computer generated letters saying visit the asthma nurse at the surgery. Our trusted doctor said they were computer generated, and our child's case was too severe to be seen by a nurse.
hth