Asthmatic DS? Advice please

[DonnaLvsPaul]

Hi, I'm sorry if I've posted this in the wrong place. I'm looking for a bit of advice on my sounds ongoing breathing problems.
So, it all started last year in October. My DS had a really bad consistent cough which often led to his being sick and gasping for breath. He was diagnosed with asthma and given a blue and brown inhaler with a spacer. A few weeks later he had a really bad turn, he initially started with a wheeze he was prescribed pednisalone and over 48 hours deteriorated and was really struggling to breathe. I rang 111 and they rang an ambulance. He was in hospital on hourly nebs, oxygen and a magnesium drip. He was in for a week. He went on over the next few months with weekly visits to a&he in need of nebs and steroids. He had another 4 admissions by April, mess upgraded to purple inhaler montelukast and slo Phyllis. In April his oxygen sat at 97%. Another few admissions and weekly a&e visits later his oxygen now sits at 94%.
He has been referred to alder hey. At his alder hey appt the specialist wasn't convinced he even has asthma and thinks that if I took him of all his mess he wouldn't get any worse. (This really annoyed me as the side effect from these mess are ridiculous, night terrors hallucinations anxiety hyperactivity etc) alder hey doc said he needs ENT to check his adenoids and remove them. A bronchoscope and HR CT scan. This appt was in September and 3 months later I finally got an appt for ENT and physiology. Physio is 4 weekly and ENT isn't until may next year! I'm petrified by May he will have gotten worse and his oxygen will be even lower.
I'm furious that they just leave him to live his life like a 60 year old chain smoker. I've no idea what to do to let him live a normal life. He has missed so much school already and I worry about the effect it will have on his education. He hardly gets any sleep as his symptoms are naturally worse at night.
Do I have a right to demand he get these tests sooner so this specialist will be satisfied he has asthma (or diagnose what he does have) and give him a nebuliser and oxygen for home (which his consultant has said he needs)?

I'm going to ring his consultant and specialist Monday to try and hurry things along but I'm worried I have no right to do so?
Has anyone else been through similar?
I'm really sorry for the long post I just didn't want to give half the information. Thank you for ready x

Hi Donna I'm so sorry to hear about your poor boy and sorry you haven't had any replies yet.

I haven't been through what you have though my dad has asthma but nowhere near as bad as your ds (she did need magnesium sulphate on her first emergency admission though so was interested to hear your ds had that, it doesn't seem that common).

The specialist who suggested it isn't asthma sounds pretty poor. Has anything else been explored though? There are other chronic lung conditions which could be a factor in such a severe case as your sons I would think.

Dd, not dad

I'm sorry for all the spelling mistakes in my first post, I didn't proof read before I posted.
They have tested him for cystic fibrosis and he's has about 6 chest X-rays and blood tests. But nothing since seeing this new specialist. He's the one who suggested a bronchoscopy and hr ct scan. He has referred him to ENT, but nothing else so far.
I'm going to ring Monday and see if I can hurry things along. Last time my DS was admitted they struggled to get him of the magnesium, aminophyllin and another drip which I can't remember the name of. They had the oxygen on full blast and his says were still low. He's getting worse and I'm struggling to keep him at home, he's on steroids ATM but I know he'll end up being admitted in the next few days.
I'm just so sick of this battle, he's only 4 years old and he's so ill all the time it's frustrating and upsetting to watch.
Thank you for the reply, I hope your DD's asthma doesn't kick off over xmas xx

Can you ask for a second opinion?

Is there any way you could get the ENT tests done privately to speed things up?

If he is going downhill despite being on steroids at home I think you should bring him to A&E today

Agree don't mess if his SATs are below 95 he needs hospital. I would be camped in consultants office asking for more proactive treatment. Steroids have huge side effects on little ones -including growth retardation.
If not asthma you need to know what it is and start treatment. If it is asthma he needs a proper plan of care and you should be given a written protocol to follow if he is ill.
Google guidelines asthma UK from BritishnThoracic Society - then demand they are followed.

He stays steady when on steroids. As soon as his course ends he'll get worse. This is probably his 30th course this year!
I know the side effect are awful, his chest is deformed (only slightly) and he's so hyper when on steroids.
His stats are always below 95 he sits at 94 when he's breathing fine.
I've had second opinion and a third, I messed up a bit as he has 3 consultants now. All of them are baffled at the fact he's on the max meds he can be and is still deteriorating.
I'm going to put my foot down, he can't live like this anymore.
I just don't want to get laughed at at his consulatNt say he has to wait like everyone else. I need to push my anxiety aside and get this sorted.

I meant he's getting worse in general btw. He's okay ATM the steroids are keeping him steady. X

I just read this thread today for my information and I am interested in knowing what solution provided your child relief?