Appointment with Pediatric Asthma DOctor tomorow and really nervous.

[IlanaK]

My 5.5 year old has hit rock bottom and my GP is not managing him at all so we decided to see a private asthma specialist (thank god for insurance!)

Anyway, the appointment is tomorow and I don't know what to expect. I have pinned all my hopes on this on the one hand, and on the other hand I am worried he will just think I am being an over worried mother and think it is all trivial.

Not sure what I am asking about really - just wirintg down my worries I guess.

How has gp let you down. DS has just been to specialist asthma clinic and I do feel a lot more in controll.

Well, its long and complicated, but basically they just perscribed some inhalers a year ago and left us to it. No asthma plan, no check ups, nothing really.

Out of control is exactly the problem. We have no idea what we are meant to be doing and he is about as low as a child can get at the moment.

i see an asthma specialist for my ds and he is really reassuring and helpful. He has changed medication quite a few times and done various tests and x-rays to rule out any other problems.

Just make sure you write down any questions/worries you have as it is easy to forget. HTH

Would you mind noting what happens, I think my ds may now have asthma as well (as other diagnosed allergies) and am thinking of going down these lines. Would really really help me if you could fill me in on what has happened in your case. Am so worried and confused as to where to go. Hope all goes well with you and your dc. x

Hi Berniebear. In our case, my son's asthma is mostly silent. He has the occasional attack, but that is much more recent. It was actually Mumsnet that made me realise he had asthma in the first place. We have no experience with it in my famliy (though lots and lots of excema and allergies) so I always thought you had to wheeze and have asthma attacks to have it.

In my son's case, it all came to a head when he kept getting every respiratory infection going, always had a cough even when well, and had energy levels so low that I sat in the GP's office and cried as I could not lead a normal life with him being so chronically tired all the time.

The GP clearly didn't think it was astham, but agreed to a blue inhaler as a trial. It transfored him within 3 days to a normal bouncy 4 year old. So they agreed he had asthma, and prescribed a brown inhaler as well and that is pretty much the last thing they did almost a year ago.

We have had regular cranial osteopathy to complement the inhalers and got him really well over the summer. However, since winter onset, he has started a slide that I have not been able to stop. He has reached crisis point now where he is so low that he spends much of the day laying on the couch (he is home schooled thank god as he would no way be able to cope with a school day at the moment). ANy activity needs to be followed with periods of laying down.

The osteopath said to me today that it is like his battery is dead. He works hard to breathe and has no energy left for anything else.

I did go back to the surgery after advice on Mumsnet to see an astham nurse. Turns out our GP doesn't have one and I saw a regular nurse who knew nothing about asthma but spoke to the GP who decided just to refer him to the local hospital. But the waiting list is 3 months long so I am going private. I still had to wait over two weeks for an appointment.

If the specialist doesn't help us in some way I have no idea what we willdo nexst.

SOrry for so long, but Bernie did ask for details!

THANK YOU so much for taking the time to write that. How terrible for you and your ds. I do so hope that things can get sorted. How on earth can anyone think that you are "an over worried mother" if this is happening?

My ds had ezcema from about 5 weeks old until 1 year (head to toe and only slept 20 mins at a time both day and night) when he was diagnosed with dairy, egg and later bad nut allergies. He is now okay, but has developed a bad cough when he has colds. He was taken to hospital after one visit to gp and given an inhalor. Sorry don't know about the colour thing as it is all so new, but it is sabutomol. Has had to use it twice since.

I'm sorry this probably seems so insignifcant in comparison. Cranial Osteopathy sounds interesting though. I may look into it. Will you continue using it?

I do so hope that things improve for both of you, and will be keeping an eye on this thread to find out how it all goes tomorrow.

The very best of luck!

BBx

I will definately continue the osteopathy. Both my sons have it regularly. I think it does help, but things have got so bad at the moment, that it needs a more agressive medical intervention.

My boys both have excema too. My 5 year old (the on e with the asthma has had a really bad outbreak of it recently. My 2.5 year old has atypical excema that comes out in weird places. This past week I had to rush to a dermatologist as he suddenly got it on his eyelids, nose and mouth. The place before that was his bottom!

Ilana, this may not be relevant, but it was assumed (by several GPs) that my dd had asthma from around 12mths, mainly bcs of persistent night cough. Always worse after a cold, and basically entrenched for the winter months. She also was knackered by broken nights (as were we). Similar story in that inhalers, after initally working, seemed not to be effective anymore. (Like your boy, she was much better in the summer.)
GP wanted to put her on a 3rd (green) asthma inhaler, advised only for 5YOs+ (she was 3 at the time), at which point I pushed to see a paed consultant. He said she was not asthmatic, but the constant coughing was triggering lung inflammation -- vicious cycle. He prescribed codeine when she's coldy, which has worked wonders.
Don't just assume it's asthma. Lots of people (GPs especially) do, but there may be other answers.
Hope tomorrow clarifies things for you. It's not a trivial matter.

Oh Ilana , that is awful. Have you had them allergy tested???? Sorry if you have and I am just a mere starter at all of this. I just know how demoralising it feels! Sometimes when things appear to be going well you then get faced with something else, out of the blue. Do you have a DP/DH to unload on?

Baked Potato, that's really interesting. I think in his case though it is asthma. The osteopath confirmed that his chest is always tight and he has difficulty breathing. However, it is a peadiatrician we are seeing tomorow so I would expect him to explore all options.

BernieBear, we have not had allergy testing. I highly doubt my GP would suggest anything that radical No doubt they both have some though as I have lots. I have a very supportive DH so no problems there.

When you say silent do you mean there is no wheeze? My ds's main symptom is an incessant cough triggered by a viral infection. My current treatment plan =

At first sign of incessant cough give up to 10 puffs of blue inhalor every 4 hrs for two days. Then 8 puffs for 2 days and so on until weaned to 0.

2 puffs of flixotide every morning and evening even when symptom free.

If this doesn't work then they will look at introducing Singulair which is a drug which works well on asthmatics that have allergies.

DS is highly allergic and has been under a specialist consultant for some time but it is only recenlty the same consultant is helping us manage the asthma. The 10 puffs seem like a lot but it does work.

sorry too late to suggest questions. Hope the appointment gae you what you wanted. Some allergy testing might have been useful, especially for milk, pets if you have any and, since its worse in winter, yeasts. You may want to try goats milk instead of cows milk for a while.

Well, here is the update.

I think the consultant I saw is insane. The chest xray showed irregularities consistant with continual viral infections and coughing for many years. He did not think ds has asthma, but rather inflammation that is seasonal. He has prescribed singulair which is an anti inflammatory. So far, I agree with all this and am happy to give it a go.

The insane part: he thought I was overstating ds's extreme exhaustion (based on the 10 minutes he saw im in the office). He said there is no doubt the coughing would be causing some distrubed nights that would make him tired but that there was nothing unusual about his tiredness and that all childrne up to the age of about 10 need naps during the day and this was why ds was tired!

ds by the way is 6 in July and would be in year 1 at school if he was not home schooled. Because of his home schooling, he could technically have a nap, but I am not sure what this doctor was suggesting I do if he was at school!

I totally disagree that it is normal for a child this age to be tired on 11-12 hours sleep a night and I have never heard of children this age needing daily naps.

This morning we had to go to the GP for a blood test for me. It is less than 10 minutes walk from our house. Ds was crying by the time we got their from exhaustion and I had to put him in the pushchair for the way home and make my 2.5 year old walk. I just don't understand how the doctor could htink this was normal???

At this point, I am going ahead with the singulair and I am supposed to make an appointment to see him again in a month. At that point, I may well be looking for another doctor.

The icing on the cake was when I meantioned the osteopathy that ds has (he has been treated at the OCC in London for a ocuple of year to help with all the viral infections). It has been a real lifeline to me and I don't consider it weird and wacky at all. Anyway, he basically told me I was being conned out of my money.

I cried for hours after I came home as I am so tired of doing battle with doctors and I also feel so cheated that if all he needed was singulair (which is normally prescribed to 2 year olds the consultant told me for this problem), why has no other doctor spotted what a simple xray showed.

Well, doc doesn't sound very sensitive but on the crucial issue it's good news, isn't it? It's not asthma. Please don't feel cheated by this diagnosis -- it's something to celebrate, bcs it's manageable. Nap thing = red herring IMO, and not worth fretting about.
You know that DS is exhausted from broken nights, the Singulair will hopefully sort those out, he will stop feeling so rundown, and life will seem better allround.

I AM glad he doesn't have asthma. But I am also angry that this was something treatable that could have been dealt with years ago. I have been taking him to the GP for years saying that there is something wrong with him only to be told that all children catch viruses and he will grow out of it. I was stil being told this when he was 4.5 even though before I was told most children grow out of it by 3.

I am just weary from fighting. And to be told twice in the space of a week (once by ds2's dermatologist) that osteopathy is a joke was just too much. Wouldn't it be nice if the health care prfoessionals actually worked TOGETHER to treat a patient rather than against each other.

I'm not that surprised by his reaction. When DS was little he had the most horendous eczema (consultant used to bring int he student Doc to have a look at his he was so bad) and we tried a private consultant who was crap. I had thought the NHS were not doing all they could but the private guy was real crap.

With his eczema we tried everything from cranial osteopathy ot chinese herbal so totally understand where you are coming from there. In the end I didn't think it helped much but it may have.

There is NO test for asthma as such and it is largly the intrepretation of whatever doc you see. They base their diagnosis on the symptoms mainly. Singulair is a treatment for asthma as well as inflamation and I think it may well work some magic.

I think I would get a second opinion regarding the tiredness thing. Have they done any blood tests on him?

No - no blood tests.

And don't get me wrong. I don't think the doctor was incorrect in his diagnosis. And essentially he is right that the tiredness is caused in part by broken nights (not that ds is actually fully waking up, but he is very disturbed with the coughing).

It was his general trivialisation of how debilitaing the exhaustion has been for ds and us as a family. And the general statement that a nap would cure it.

Om a side note, I coul dnot believe how much I was charged for 28 tablets of the SIngulair. £52!!! This was at the Portland hospital in London. And of course PPP does not cover it.

I asked my local independant chemist this morning how much he would have charged, and he said £38 and that would have been at a mark up too. Its disgraceful they are charging so much more at the hospital. And I had no choice as this was evening and the doctor wanted him to take one straight away.

not having asthma is good news but I understand your concern that this may not address all the problems. However the only way to find out is to give the medication a try and see how much of an improvement you get. Hopefully you will find a big improvement in him. If not then you may want to think about some allergy testing for him and it would be helpful to start keeping a food/ symptom diary to help with that. In some people milk seems to encourage inflammation so changing to a less allergenic milk helps. Gluten can make coeliacs exhausted. Hopefully your child will improve anyway and you wont need to go down that route but if you do you'll find lots of advice here.

do you mean osteopathy or cranial osteopathy?

Well, its a combination of both I think. Its the Osteopathic Centre for Children in London and sometimes they have been very gentle as in cranial osteopathy and sometimes more vigerous in what I would think of as traditional osteopathy.

I am pleased that the dr doesn't think it is asthma, that is good news. For the tiredness, although it is in part due to broken nights, I would have thought that the gp could have ordered a simple blood test to check for anaemia. I agree with tatt about allergy testing or keeping a food/symptom diary. HUGS, I hope that things improve and that you can get to the bottom of your ds's symptoms.

hmmm. osteopathy has some evidence base but the cranial stuff is why they've all been so sceptical. I would just not mention it if I were you.

I know you're seeing quite a lot of people, but would it be worth seeing a general paediatrician, who might look at the broader picture rather than "just" asthma, iykwim?

Well, I am going to give the medicine a go for the month that he said. Especially having paid £52 for it! But at the end of the month, if I am still not happy, I think I will be looking for a different doctor.

cranial osteopathy is th efringe of the profession so even some oseteopaths are doubtful about it. But lots of people swear by it. I know the osteopath my partner saw totally changed his life (for the better . He'd resisted going until he got desperate because he was convinced it would be a waste of money). I'd never let anyone tell me osteopathy didn't work.