Advice needed please

Hi, my names Hayley and i'm new to the forums, i apologise in advance but i suspect this post will be massive.

I've had asthma as long as I can remember and mine is under control so much so that i usually forget to take my pulmicort unless i have a cough and cold!

I have a 6 year old son (only turned 6 last thurs) called Oscar and his asthma is not under control.

He was finally diagnosed around his third birthday after me fighting since he was a baby to get a diagnosis, he was originally put on the clenil 50 (2 puffs twice daily) and ventolin (both through spacers, first the airochambers - sp? and now the volumatic), along with prednisolone (sp?) and amoxycillin as he was so bad at the time. Luckily I saw the best doctor at the surgery in an emergency appointment as he couldn't breathe properly otherwise we wouldnt have had the diagnosis. Unfortunately he cannot take him on as his books are full.

The clenil 50 and ventolin werent helping his asthma at all so after seeing the asthma nurse he was given montelukast (singulair) to take as well. Again there was no real improvement and he was given the Serevent (Salmeterol) of which he was to take 2 puffs twice a day. This still didn't really help his asthma so we were back and forth to see out GP who regularly put him on steroids (pred) and quite often antibiotics as he suffers a lot with chest infections. I was also told to disregard the maximum ""2 puffs 4 times daily"" on the box and told to administer it when he needed it from now on.

After getting nowhere on this combination the doctor increased his dosage to 4 puffs twice a day (400 micrograms) which helped somewhat but not greatly, by this time i could see the doctor was getting sick of seeing us but as his mum i knew i had to fight for him. His asthma regularly makes him sick and he misses so much school due to sleepless nights/sickness/shortness of breath etc... that i couldnt leave it even if i'd wanted to.

In October last year we went back to see the doctor who gave Oscar the Clenil 100 inhaler and increased his dose to 4 puffs twice a day (800 micrograms) and increased his Salmeterol to 4 puffs twice a day. Oscars asthma still wouldnt settle so we were back and forth at least once a week to no avail. In February i weighed Oscar and he had lost a stone in weight since xmas (he is now 3st6 but 4ft2 so by no means underweight but still a dramatic loss) so again we went back to the doctors who weighed him, he was 2lbs down on 12months previous according to docs records but still no cause for concern and i was simply told to contact the school nurse so she could check up on his progress in school, which i duly did.

I spoke to the school nurse 2 days after seeing the doctor as she was on annual leave and she immediately wanted to know his medical history which i went through:

800 micrograms of clenil

8 puffs of salmeterol

ventolin around 6x2 puffs a day, sometimes more

montelukast

i also mentioned that Oscar was only urinating once every 24hours and drinking excessively throughout the day with no accidents at all or pain when he went, and his weight loss.

She requested a urine sample and decided to contact an asthma specialist at the local hospital who she knew and asked if i could bring a sample the following day. Oscar produced a whole 25ml (!!!) which she dipped herself as she'd had plenty of practice in her previous job and it showed traces of blood and sugar so she told me to take him straight to the doctors and she was going to call him herself. She then told me that the doses he was on were twice the British Thoracic Society recommendations and with such dose of clenil and the montelukast he was at risk of kidney suppression, which explained the lack of urine.

I took Oscar to the doctors that afternoon and our GP - the one who had put him on such doses - rolled his eyes as we walked into his office (second time in a week we had seen him) i provided him with the same sample that the school nurse had previously dipped and it was miraculously completely clear! without questioning anything he said the school nurse had spoke to him and she had unduly worried me, he then quartered oscars clenil and halved his salmeterol without so much as listening to his chest.

since this happened (2 1/2 weeks ago) Oscar has had many asthma attacks, that luckily the ventolin through the spacer eases, he is vomiting catarrh (sp?) constantly and has had lots of time off school, i suspect he has a chest infection so last wednesday i booked him in to see our GPs locum who refused to listen to his chest and gave me a barrage of abuse, refusing to refer Oscar to an asthma specialist even though we are constantly there and have asked to be referred no end of times. She criticised me as a mother and told me that Oscar was receiving standard treatment and no other inhalers could be given as he is only 6, i protested as ive had a pulmicort since i was young but apparently i'm lying! I left her office and went straight to reception and changed GPs, we have our first appointment with him tomorrow afternoon and i've brought forward his asthma review to a week on wednesday as its the earliest they could fit him in.

Throughout his asthma Oscar has never done a peak flow meter and i've constantly been judged as i had him at a young age (17), please can someone tell me if i'm being overprotective or if i'm doing the right thing? i'm going out of my mind with worry and i dont know if its normal, all i know is that my inhalers have always been stronger than his and i was never as bad as he is now, even before i was diagnosed! Sorry i've written so much, im just at the end of my tether!

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Welcome hayee

,Dont be hard on yourself as you know your son and how he is and as a asthmatic you have good asthma knowlage.

Write questions down as most of us have a brain block at docs.

Take any info you have with you.

They will get notes of your doc but be clear on how he is and what hes on. The new doc will build up his own trust as patient and doc and should see you a bit as new patient and maybe asthma nurse.

You could ask for pf tested and get a peak flow free on perscription and a free pf chart of Auk.

You could ask him also for a alergy test or refural. if you have a cat or dog ask the doc do a RAST blood test just for pet alergys.

Good luck hope this helps a bit.

love glynis xxx good luck with Oscar

edited to space it out .

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Thanks for your advice, I'm allergic to cats and dogs so we don't have pets and I have numerous allergies myself and have to carry 2 epi pens at all time; I've asked for Oscar to be referred to my allergy consultant but they've said he's too young to be diagnosed with an allergy? (I was diagnosed at around 4 with my peanut allergy but that was after going into anaphyllactic shock after eating that pink and white soft nougat)

[angievere]

I feel for you Hayee, it's very difficult with asthma in a young child. You are not being overprotective and GP is out of order for being rude to you. It sounds as if Oscar should be referred to a consultant.

As Glynis says, write down questions and a brief history of what has happened. And say he has missed lots of school and that you are really worried.

Good luck at the doctor and feel free to send me a private message. My son has been ill since a baby with asthma and I am a lifelong asthmatic myself! xxx

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Hi, sorry to hear you're having such a tough time with your son. I would just mirror what the others have said. You're his Mum, you know him better than anyone else, don't rest until YOUR happy!! Your age has nothing to do with it.

Just wanted to add that the doc doing the urine sample, they should only test a FRESH sample, anything that's been hanging around will change over time and is not representative.

Good Luck!!

[Hidden]

hi hayee

sorry to hear u and ur son having rough time :S

at 6 he is defo not too young to be tested or indeed diagnosed with allergies, where i used to work, i did skin testing on 2-3 year olds ?? so that doesnt make sense ?? as long as you have a strong history of allergy history, or an idea of allergens ??

in relation to peak flow, normally monitoring of such begins at age 6 years old. so that would defo be something to look into. obviously the effectiveness and reliability of such is dpendant on technique, so as his technique/practice improves so may his peak flow

as the others have said, write down all ur questions before all ur appts to ensure u get all ur questions answered

good luck

x x x

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Hi all and thanks for your kind words. We saw our new GP earlier and he was brilliant, he listened to his chest and did a peak flow (150) but as Oscar had never done one before it took him a while to get the hang of it but the doctor was patient and helped him, he has given us a junior peak flow meter for at home and went through all his doses with me.

We were with him for 30 minutes which was completely unheard off with our old GP, we werre lucky to get 5! He was baffled as to why the old GP reduced his doses so drastically and has increased them as he saw fit (600micrograms of clenil to see if it helps control his symptoms) he has also asked to see him again after the asthma review which is a week today and he is looking into alternative steroid inhalers to see if they could help. He also said that if we still didn't get anywhere then he would refer him to a specialist. I didn't even ask for a referral so needless to say i'm really happy and i can see a light at the end of the tunnel.

The biggest lesson that i have learned over the past few weeks is not to be afraid of swapping doctors, 12 months ago i woud have been too timid to even think about it but its the best decision i've made in a long time.

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Hi Hayee, Well done on being brave and swapping gp's and I am so glad you feel much better now. I hope Oscar will improve and soon start to feel better. As I have always been told, do not worry about causing a fuss, you as Oscar's mother know him best and know when things aren't right, its just a pity we always feel like we are making a fuss!

I do think that Oscar would benefit from being under a consultant at the hospital so hoefully your ""new&better"" gp will refer Oscar.

There are a lot of ""friends"" on this site who know and understand what we as parents (and sufferers) go through, and this is a great place for just sounding off, looking for advice or just feeling like you are normal!! I am mum to Louis who is nine and is suffering badly at the moment with his asthma and I find such comfort belonging here (don't feel so alone).

Take care, big hugs to you and Oscar

Serenity xx

[angievere]

Hi Hayley, That is good news. A sympathetic doctor makes all the difference. xx

[Hidden]

Hayhee,Glad it went really well for you and time with your new doc to get it all sorted with meds and forward planning after asthma review. You did really well getting up the courage to change doctors as we parents know our children most when arnt well. love glynis xxx