Can anyone help me get over this?

Hi everyone

I am writing about something which happened 20 months ago but which is bothering me tonight. I am hoping by writing it down it will help - I know it's irrational to still be upset about it now.

In a nutshell, my son who was 4 at the time, coughed on every breath for three nights and three days and no one would help. He couldn't sleep at all because he had to cough on every breath. It was like torture and the doctors just didn't seem to care because his SATS were ok.

I phoned NHS direct who said he needed a nebuliser, I phoned out of hours who said he needed a nebuliser, but then I would get to out of hours and the doctor would refuse to give it. This happened three times.

My son was exhausted and by the final day he slipped into a depression and stopped trying to speak. It was only then that the GP took it seriously but it was on it's way out then and in any case they don't have a nebuliser there.

Ironically they were happy to give steroids and antibiotics which were next to useless, but refused to give the nebuliser.

I am so angry about it tonight and I don't know why. I knew he needed it, I wish they had just tried it.

Seeing what my son went through was kind of traumatic for me. I feel so awful that I couldn't help him.

He was so stoic for the first 24 hours then he started looking at me with tears rolling down his face for the second 24 hours. All I could do was stay with him. I did everything they told me to do and nothing helped.

I have titled this CVA because that's what I think he has as he never wheezes, but he hasn't had that diagnosis, just asthma in general.

He's 6 now and that was the second to last time we ever had any problems. Tonight his SATS are 94 so I was thinking of calling the doctor if he gets distressed and I suppose those three nights came back to me. I don't feel like out of hours are on my side.

I don't think there's anything I can do to make it feel better but if anyone has been through similar I'd appreciate it.

Thanks

Gem

x

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I also find that when things go bad, I also start remembering and feeling upset and angry about times when doctors have been unresponsive and things have gotten worse because of it.

I find that doctors often have a problem realizing how serious a situation is when cough and shortness of breath are the primary symptoms.

I wish I had practical advice about what would help doctors be more responsive.

But all I can say is what friends keep telling me: keep trying and don't give up.

In my case, I'm the asthmatic - but I think the same truth applies whether we're advocating for our children, spouses, or ourselves.

Bottom line is, you know when your son is in distress even if doctors have a hard time with it - they see only a snapshot, you see the bigger picture.

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Hello Gem,

I do know that some Doctors are unaware, and some are aware of CVA. If things are at a point where you think you really want to get to the bottom of the coughing, like the cough is there all the time for your boy, my specialist mentioned there are only a few 'cough experts' in the UK. He did say that that coughs are the hardest thing to nail. Perhaps you could get a referral and find if there is a trigger, see if you can get the quality of life back. I do hope that people and doctors become more aware of CVA. My GP wasn't aware himself, but he did some old-school tests (his own words) he gave me a Peak-Flow, and he could see the diurnal asthma. Let us know if you get any progress. Good Luck!

Mark