asthma or not? moan alert!

I apologise in advance for the moan but really do not know what to think anymore.

Over the past few months my son has had a bit of a rough time with his ?Asthma. He caught a chest infection just before christmas and has been really up and down since (more down than up). He has had 5 admissions since Jan but does not conform to our local consultants idea of Asthma and there have been a number of suggestions his symptoms are psycological either through stress or my concerns rubbing off on him.

The consultant feels his symptoms are over-exadurated or percived to be more serious than they clinically are. The main problem seems to be that Jay rarely wheezes and when he does it is only very mild. His sats are usually ok, no lower than 95% and apart from a prolonged expiritory phase all the other symptoms can be induced. ie, rapid breathing, reduced peak flow, high pulse rate (put down to overuse of Ventolin.) At our last o/p appointment Jay had lung function of 55% but after the quickest chest examination ever (took 4 short breaths to complete) I was told wonderful, everything is fine and his chest is pristine clear.

We have a good relationship with the reg and sho's at our local who seem to accept Jay doesn't wheeze and have taken to looking for other signs such as inablity to talk in sentances, chest pain, accessory use and response to salbutamol. They ask Jay how he feels and seem to trust his judgement. The problem is the consultant. He is extremely dismissive and at times makes sarcastic comments. He discharged Jayden a few weeks ago after an overnight admission but Jayden began struggling again that evening and was readmitted. He passed me in the corridor the following day and said 'so whats going on now?'. He obviously didn't want a reply as he continued walking by.

I have only ever made a fuss once when an A&E doctor refused to get us a referal to peads as Jay was no longer wheezing after 2 nebs, despite his pf still being less than 50% and a drop in sats from 96% - 94%. I got no where with my complaining and was told I was quite at liberty to bring Jay back if I felt he needed to be seen again. We were back 10 hours later and admitted to HDU. I am a calm parent and Jayden is often calm and usually asks to go home when they want to admit him as he doesn't want to stay. Does this sound like a psycologic problem?

The only things keeping me sane are the fact RBH say he definately has asthma and I have a very supportive community nurse. But I am now at the stage I don't want to take him to our local unless he is really struggling as I don't like the insinuations. Earlier this week I rang his asthma nurse as he was using alot of ventolin and asked her what to do as I didn't want to use his emergency card. I am getting embarassed going there all the time - so she rang them and said she was referring him. It's a rediculous situation I know but I have really taken some of the comments to heart. As it was jay wasn't very well and had a 25% pf when we got to hospital, breathing rate of 40 and was using accessory muscles. Back to back nebs brought him to just over 50% and he was admitted on 2 hourly nebs.

I am starting to worry my judgement is clouded because of all this and I am no longer confident in assessing when to seek help. I don't want to leave it until he is really struggling but am worried I will be viewed as a paniky parent by going too soon.

Just needed to get this of my chest so to speak - don't need any replies really just somewhere to vent my frustration.

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Hi Koolkat

Just wanted to reply so that you know that you are not alone in this situation....i personally have been going through a very similair situation with regards to my asthma (or not) and the doubts that go through your head can be very destressing...i have no answers myself yet...although i am always hoping that something will be concluded and i am booked in for a number of tests to try to get to the bottom of this situation..

Just wanted you to know that you are not alone and if i can help in anyway and share experiences any further then let me know.

Take care of yourself and son x

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Hi Koolkat

The scenarios you have described are almost identical to the attitudes I have faced in the 3 years of having asthma (Maybe!) The only thing keeping me going is my Gp who seems to believe me 100%. I have got myself so worn down with it all that I have honestly thought I must be psychologically unstable and asked to see a psychiatrist!

Please don't think you're alone, I'll pm you over the weekend.

Take care

Sarah x

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Sorry you are having a rough time. I have met some awful consultants in my time. Fortunately, I have finally found an excellent one now who is really understanding. I still have problems though. My consultant has written a protocal of what is to happen when I am admitted as he knows what medicines work for me. however, if my consultant isn't there, some of the other consultants will not use his protocol as they are arrogant and think they know better, even though I have had the same sonsultant for 10 years and he knows me really well!

Can you ask to change consultants and see someone different?? I know people who have done this before. maybe you could get RBH to write a letter to your consultant, discussing their findings so that he has a clearer picture of what is going on??

[yaf_user681_30003]

Koolkat

Sorry to hear you're going through it all.

I dont have any answers, just some very poignant and repetitive questions and they are:-

Just how many more times do we need to hear the same thing?

We have to do something to stop this happening time and time again. What can we do?

How do we make them all listen?

I'm with you and feel for you Koolkat. That wasn't a moan - it was an echo.

Alan

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Hi

Hi,

I don't want you to think that you are alone, god bless you. i have been through a similar situation with my son John..... No there is not much asthma going on here, we will do a brochoscopy... No it could be cystic firbrosis.... we will do a ct scan and a sweat test.... Actually 3 years on from that the diagnosis is Chronic Severe Allergic Asthma.... Well make up your minds and stop making me think that I am going around the bend..... In recent consultations I have been advised any problems then please get intouch with us directly and we will see John as he is closely monitored..... 2 weeks ago I fretted all weekend struggerling with peak flows and thought if I could just get him till Monday then I can ring the hospital otherwise I get in the wrong system with out of hours and could get sent anywhere.... So relieved that I got through to Monday morning, I rang the Respiratory Nurse Specialist to ask for some advice and she turned around and informed me that they are not a drop in centre, not an out of hours or an emergency care unit.... Your G.P is your primary care........ Knowing that my gp of 30 years would have to get advice from the hospital I thought to save time I would miss out the middle man...... low and behold I went to the G.P who then had to go on advice from the hospital........ I am totally put off by this and to be honest would never ring her again..... I thought she was my support, but obviously I was wrong......

Experiences like this dont half put you off and its an awful feeling when you have to see them again... somehow you have to put it down to experience you know your child and if you dont speak out for them then who will....

Take care and chin up.

Beverley.

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Hi Koolkat,

Isnt it sad that so many of us can identify with what you are going through.

I am so sorry that Jay has had a bad time recently.

If we or our children dont tick all the boxes at the sametime then some doctors just dont seem to be able to cope with it, even if they are consultants.

I wheeze for Britain when i get started but my daughter rarely does......silent wheezer. She coughs alot and her pf's are affected but not always her sats and when she was younger her symptoms were dismissed on a few occassions, only for us to return shortly after. I am sorry to say that i have had a fair few verbal run ins with docs in the past despite being a calm person, like you. I was also a nurse in a past life........so should know better !!!

Jayden sounds alot like Emily, she used to say she was fine and wanted to go home but, that was because she didnt want to cause me any trouble by staying in and was scared.

Please dont worry, you are Jaydens mum and know him better than anyone else, it took me along time to realise that it doesnt matter if i am a pain, and i have been called a neurotic mother more than once, but equally been proved right more than once !!!! You are not alone, stay strong. If in doubt just ask for help is my motto. Its never easy what ever we decide to do. I still dither sometimes even now.

Take care and i hope Jayden keeps well

Cathy x

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Thank you so much for all your kind words of support.

Cory :- I hope your tests can give a firm diagnosis - one way or the other and you get the appropriate treatment. The not knowing is really difficult to deal with and you spend half your time wondering if you are taking steroids for no reason. Jay had a number of tests done as part of RBH's asthma protocol including PH study, broncoscopy, sweat test, lung function tests and eosinophil sputum counts. The results were he def has asthma and not an associated disease. They also found he is steroid unresponsive as after 3 months of rediculously high steroids he was still getting ill and needing additional prednisolone on top. Jays consultant at local read the report from RBH and said 'well what made them come to that conclusion?' The end of the letter said 'I am sorry we are having such a hard time getting on top of this young mans symptoms' only to get the comment 'aren't we all!' It's comments like this that really get my back up - they refer him to a specialist hospital then seem to belittle the response.

Gloomyeeyore:- I can so relate to your comment about psycological support, I have had times I have severely doubted my sanity wondering if I am making a fuss for nothing. I certainly don't enjoy spending my time at the hospital, being a single mum with 3 kids I can certainly do without the added stress of having a child in hospital. Perhaps they think my life is more manageable with one less child to feed and care for! Perhaps thats my motivation? Last week I arrived in PACU to be assessed at 2.30pm and left my 14year old at home with my younger daughter expecting to be home by early evening. It took until 9.15pm to decide to admit Jay so by the time he was sorted I didn't get home until 10.30. The kids hadn't eaten so I grabbed a take away and felt like a really crap mum when I got home as my youngest had taken herself to bed and the older one was falling asleep on the sofa.

Karly :- we have similar posts this week, I know I am not alone and it does help to have the support of others in the same situation. RBH send copies of all appointment letters to local so they are fully aware of whats going on. I have considered changing hospitals as we live in London and there are a few to choose from in my area. My only concern is we have an emergency card for direct access to ward and peads reg, and most of the docs we see on arrival know Jay really well and are very good. It's just the consultants I seem to have a prob with.

Alan J :- Thanks for the support. There are far to many people in a similar position. It is very worrying.

Beverly 007 :- Iam so sorry to hear you are also struggling. We are very fortunate to have fantastic resp nurses to talk to, I am shocked by the response you received. I have always had really good support from nurses it's the docs who often don't have time to listen. Does your hospital have an emergency card system, it has really helped with Jay, I have been told anything asthma related to use card at anytime and don't worry about GP. Perhaps you could ask.

Em'smum :- You words really meant so much to me. You are right, I do know my son and I also know he only complains when he is feeling really ill. He is finding it really hard not being able to participate in his normal activities at the moment so I know it's not psycological. Jay is a national level gymnast but recently has been unwell to go at all, this is something he puts his heart and soul into and it's killing him not being able to go. He enjoys school and doesn't really have an issue using his pump in school or saying he needs to leave the lesson to get it so don't even think it's the change to secondary school that has has had an impact in him.

Cheers everyone

Nikki

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Hi.

More needs to be done to educate doctors that not all asthmatics wheeze, some of us cough and for some of us our peak flows can be very reduced but our SAT's can be quite good. Maybe Asthma UK need to run a campaign.

It seems to be pure luck as to who you see. When I went to hospital in Australia the triage nurse dismissed me as being urgent as my SAT's were fine but I was coughing my lungs up, my peak flow was low, and I couldn't talk in sentences. When I was taken through the nurse there realised I was worse than the triage report and got me moved to where I could be properly monitored.

Hang in there and don't take no for an answer. You know your son just as I know my asthma, and I know that mine is asthma as I've had a whole battery of tests conducted by the asthma and allergy research group at the local teaching hospital that proved it is asthma.

Jen

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Hi Nikki,

I'm so sorry you're having to go through all of this rubbish on top of having to deal with Jayden being unwell. It makes me so angry to hear of doctors treating vulnerable patients/parents in this way - they are supposed to be part of our support system and help us through the difficult times, and we are so dependent on them, so it's particularly devastating to be treated in this way. I can totally understand how you must be feeling very lacking in confidence now, but you are a great mum who obviously knows Jayden's asthma back-to-front, so please try to hold on to that and stand up for what you know to be true.

I am very lucky at the moment with my team; my consultant, the respiratory nurses and the ward team are all excellent and know my asthma and my warning signs. I have had bad experiences in the past. I don't wheeze when having a severe attack - I get the classic silent chest - and a couple of times people have assumed I was hyperventilating and having a panic attack. I remember one paramedic saying to me 'this is not asthma - this is you not controlling your breathing' when I was in the middle of a severe attack. When he finally got around to checking my sats - just as we were pulling in to A&E - and found that they were in the 60s, he had the cheek to say 'you shouldn't have left it so long'. Errr... I didn't, this is how brittle asthma goes.

My husband Alex is the best person to really accurately assess how I am doing - he can always tell if I'm about to go off big-style even before my obs, sats, gases etc deteriorate. Our local A&E have learnt from experience that if Alex says to get an anaesthetist, they had better do it fast-ish! Alex has had to learn to be very assertive and not hesitate to tell doctors and nurses what to do - something which does not come at all naturally to him but that he has got really good at now. Of course he has now qualified as a doctor himself and this obviously helps a great deal, but he has been telling doctors to start iv aminophylline for years with a fair degree of success!

Everyone has their own signs which suggest that they are unwell or deteriorating, and we don't all fit in the nice little boxes that some doctors would like us to. Your consultants may be experts on asthma (or they may not be, unfortunately) but you are the world's leading expert on Jayden and his asthma - never forget that. You are a very valuable part of the team that looks after Jayden and any doctor who doesn't treat you as such is foolish. Hold on to what you know, try to be confident and trust your judgement - difficult I know in the face of the doubters but you can do it.

Take care

Em H