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
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!