So confused and frustrated! What next!!

Im getting so frustrated as to my daughters condition and the confusion that seems to surround it. :(

She was diagnosed with Asthma due to history. Then was found to have food in her lungs on bronchoscopy (quite a shock to say the least!). She then had a test and was found to have an abnormal swallow so breathes food into her lungs.

A couple of months later, she got rushed into hospital with Adrenal Insufficiency and a non existant cortisol level!

They then thought it may not be Asthma after all due to such complex symptoms.

After a billion tests, they said she probably had Bronchiectasis too. Finally a CT scan ruled that one out! BUT her xrays show dilated vessels.

At present, she has dilated vessels in her right lung which is of concern, she doesnt swallow correctly and is still aspirating and choking regularly. And on top of that she exhibits Asthma symptoms and Adrenal symptoms!!

And the whole time, every app (and there are lots as she is under 3 consultants and other health proffs) brings new tests and procedures for her to endure. All of which leaves them scratching their heads.

I just feel so confused!!!!

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  • dr's can get confusing esp when they use their lovely jargon... the best thing to do is to write down questions and when they give they answers just say u dont undeerstand and ask them to explain it further........ paediatric drs are great at breaking things down into smaller chunks.... hope you get answers soon.

  • sorry your having such a hard time with your daughter. just thought id say i totally sympathize with the ""more tests"" at every appointment, its been my life story for nearly a year now, and am under about 15 consultants! writing questions down is a good idea, especially as the docs are prone to telling you what you werent expecting. that always makes me forget my questions...

    all the best, hugs to you both.

    Rose xxx

  • I can understand why you are so fustrated and confused, anyone would be. It must be so worrying for you too.

    If your GP is good have you tried booking a long appointment with them so you an have a good chat about things with them? Do you get copies of the letters the consultants send to each other and your GP? This might help you to understand what they are thinking, or help if you can't remember everything said in the consultation. You could even get your GP to go through them with you if there are things you don't understand.

    Bryony

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