My daughter is 10 years old and being diagnosed with asthma at the age of one. Up unitll she was 6 years she was in out of hospital every week, seeing great consultants at newcastle. Her asthma became more stable, but we left newcastle and went to local hospital.
Since October her asthma has dramatically deteriated, she has missed 9 weeks of school. Her peak flows are dropping to 100 at the worst or vary between 250 and 350 (she normally manages 450 when well) On discussion with her consultant she advised her lung function was always ok. And that she shouldn't missing any school (yet at the first sign of a cough the school send her home, also she up most of the night coughing, wheezing and short of breath). The doctor told her there are children with worse peak flows so why cant she cope? Upon this statement we left and she cried her eyes out adising she wasn't making her asthma up. She has been admitted four times since october and doctors kept her as she was needing nebs less that 4 hourly. We asked to see this doctor but she was always unavailable, even after advsinig mr to take her to the ward to do a lung function, 3 ocassions I did but again she was not available. She then advised the doctors reported to her that my daughter was ok, on that response I asked why did the doctors keep her in? I have been advsinig the doctor we are not coping (myself and daughter) with her poor asthma control, yet she has no suggestions, just very abrupt saying children have worse peak flows than hers. She is getting more depressed as she is missing so much at school and dance activities as she is too wheezy or just doesn't have the energy.
I have asked for her to be referred back to Newcastle doctors, which has been done. Has anybody else experienced this where doctors say they disbelieve the child? It has become so bad that I have had to give up work for the forseable future to look after her? The school are having more training to give her nebs, but what can you do when your child id up all night..
Any advice would be most appreciative In ten years od seeing doctors and consultants I have never experienced this, they have all previously advised she is not normal symptomatic asthmic and brittle with it.
Hi. My son who is 7 has been seen at rake lane since being 4 months old and we have had problem after problem with them. Luckily I managed to get reffered to newcastle as my son also has heart problems and sees a consultant there for that. Don't give up, complain and make as much noise as possible demanding to be referred back to newcastle. hospitals like rake lane and other similar ones need to be found out for how bad they are. good luck. i live in north tyneside.
Hi I could have written this post about my 10 year old Son except he was properly diagnosed last year. We have seen loads of consultants and most are a waste of space, we have seen a few gems.My Son has peak flows of 400 regularly but is on lots of meds daily. He has at least 3 severe life threatening attacks at school which come on rapidly without warning. His peak flow only alters when he has a cold then goes dangerously low. I have actually sat down before now and asked him out right whether he was trying it on as consultants were baffled and basically saying this can't be happening. He was really upset and said now YOU don't believe me to which I replied, I do but needed to ask so we can now do battle. Unbelievably my asthma has just become brittle, the first time since I was 7. I have peak flows of 400 with severe chest pain. I had to have oxygen double nebs with my oxygen sats at 98% so all looked well, thank God the paramedic believed me. I just couldn't breath. Luckily my lungs didn't sound so good.
My Son missed loads of time off school last year as he was constantly ill.We took him away for a week in the Sun in Oct/Nov, wow this has been his best year ever, hardly any colds and only 1 lot of steroids this year (less than me!)We still have the surprise asthma attacks to cope with and had real problems with the school taking it seriously but they do now. We are back to consultants in a few weeks so hope to get some more answers then but doubt it. My Son just doesn't follow the normal pattern for asthma which leaves us vulnerable and on our own with it which scares us to death. I hope you are lucky enough to get answer soon. It really is a nightmare
Kate
Hi Folks,
unfortunately it's not only children that some medics don't believe!! My daughter was accused of non-compliance with her medication for over 12 years as her blood levels were low. It turned out that she had an absorption problem but some medics continued to accuse her particularly the anaesthetists in I.T.U. which unfortunately she was admitted to on a regular basis ( 2-3 times a month )
Please make as much noise as possible remember you are your sons voice. Good luck LIZ x
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