I GIVE UP !!!

Had to take Jimmy back to the doctors today as his coughing has got worse again and it woke him up in the night and is making him gag again, the nurse took one look at him and said she wanted the doc to look at him cos she wants him to go the the hospital for some help. He look at him and said he is fine there is nothing wrong with him and to take him back if he gets worse. What the hell am i ment to do its not normal for a baby to be like this all he wants to do is play and jump about but he cant because of his coughing.

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Hi,

If you are not happy then take Jimmy to A and E. Are there any other GP surgeries near to you? You are able to change your GP surgery if you are not happy or if you want to stay where you are ask to speak to the manager.

Good luck.

Judith

[yaf_user681_23350]

Just keep going back until you get some help, I know it's frustrating and totally knackering but they are wrong. Matty coughs and coughs until he's sick. He is over using his diaphragm to breath with and is in lots of pain, his lungs are really hurting him too. He is was in tears earlier as he said no point going to the doc as they are useless (he's 10). I call the ambulance when Matty gets really bad as at least he gets oxygen and nebs which really help. Have you got an asthma plan?, I know these are not always ideal either, lack of wheeze stops us at every point. I feel like I'm trying to unlock a puzzle that's way beyond mensa level and with locks at every level and comes with a manual written in latin. I don't think I will ever truly know whats going on.

Good luck and keep on fighting, kids with other life threatening illnesses don't go through this just to get treatment and get counseling, interesting that isn't it!!

Kate x

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Hi Judith

He is coughing every 30-60 sec im sure its not right the problem is his oxygen was 97 and he seems happy enough im not sure if its just me being fussy !

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I know how you feel Kate i just have got to the point where i dont know what to think !

[yaf_user681_23350]

Matty's and my oxygen levels are always at 97 to 99% even when having a severe attack, we need blood gases done. Don't take any chances, trust your instincts. The doc may get annoyed with you but for the sake of your son I'd say s*d it. Call the asthma line too, they will help you to ask doc the right questions and what to say

Good Luck

Kate x

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Yay Jimmy is going to see his specialist on the 28th so i hope to get more help x

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Hi Rattles

It is really interesting that you said neither you or Matty ever have low sats but struggle with your asthma. I have a very similar problem with my son Jayden, he is short of breath, has pain in his chest, uses accessory muscles, has appalling peak flows and gets little relief from nebs. But because his sats are usually above 96% his local consutant says he can't be that bad. Once after was crying on and off for 24 hours being in hospital and not getting any better with no increase in pf with inhalers, they agreed to give IV Salbutamol, and although it made him vomit he responded really well and picked up in about 5 hours and doubled his pf. They then put him back onto inhalers and within 24 hours he was back to where he started cos they tried to wean him too quickly. He spent over a week in hospital cos he couldn't pick up his pf's and felt awful on inhalers. The hospitals policy is you don't need nebs if O2 is not below 92%. What shows on blood gases for you guys that proves it is a severe attack. Not many hospitals will do blood gases on kids and certainly not without low O2 saturations.

Really interested in your reply as I think it might be worth looking into.

[yaf_user681_23350]

Hi Our local hospital has never done blood gases but we are under a specialist 2 hours away and they have checked him.We have letters we take in to our A+E from local consultant and respiratory consultant so they all have to follow the rules. I was in hopsital 10 days ago as i couldn't breath sats said 99% , was on oxygen 3 or 4 hours with nebs. The nurse came over and said ""my God you look much better"" he understood I didn't wheeze, doc was not so helpful!See chest consultant in 6 days so will ask about blood gases.

Good luck guys, it's not been fun for asthmatics at the mo and it's so much worse watching my Son go through it but he says the same about me!

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Ashleyboo, your gp sounds ike an idiot. see someone else within the practice if poss, do you have an asthma nurse at your practice. if there is no one else that is suitable you may need to consider getting stroppy with your gp (obviously not enough to get yourself chucked out the surgery lol) or consider joining another practice. sounds like your son needs to be referred to a chest con and if you need to; fight for it hun. xx

as for everyone else, sounds like i am the same as you, no wheeze, sats never really go down, when they do its a case of i need help and i need it NOW. i get lots of pain in my chest, i tell my kids nelly is paying me a visit and if i am really bad then her whole family has come to visit me, the pain can become unbearable and docs just look at you like you are an idiot. the 1 fear i do have with all the coughing is years ago i managed to fracture my ribs and got told that there every chance i could do it again :(. most times i end up in hospital my blood gases get done but boy do i hate it, they always have to chase the vein and it hurts..... i look like a pin cushion when they are done lol.

reading what you guys have been saying on this site in some ways i get it lucky in my area and in other ways its lacking. i am currently fighting to be referred to the brompton as not really happy with my con. one day guys we will all get the care we need til then keep fighting everyone, take care all.

[yaf_user681_15459]

Oh Ashleyboo, poor you and poor jimmy! What a nightmare!

Maddie (21mths) has been in that situation many a time! She coughs so regularly that in fact she cannot get a normal breath imbetween! Eventually she is vomitting and still can't catch her breath! When this happens we have called an ambulance!

Every occassion we needed an ambulance we were told we did the right thing and that she definately needed nebs etc. We were assured if in doubt call for help!

Even thought we live in fear every day of brittle asthma, we know if we begin to get too scared, we call for help!

How often is he having his blue inhaler?

Do it hun, call for help if you're scared! Jimmy needs you to be his voice. If he's coughing more than he's not, then its a concern!

We had an awful gp a while back. He saw maddie and said she ok! An hour later she was being blue lighted to hospital! If in doubt we call out of hours doctors now too.

At last we have a good gp who is supportive. Our out of hrs service know maddie too and listen to us!

Soo hope you can get help! Don't be afraid to shout for it.

Xxxx