Addenbrookes !!

Well off we went to the hospital today, once again they are unsure whats really going on with Jimmy he has Asthma that we know but the reasons for his recurrent chest infections and growth of pseudomonas are just a mystery. Jimmy has emphysema that we know but i feel its being blamed for everything. The sicking up of the mucus now seems to be the last thing on my mind. I hope good control of Jimmys Asthma might be the answer.

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Bless you, sounds your poor son is having a tough time, not to mention what you're going through. Sending you hugs, hope things settle down soon xxx

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Thanks for the hugs it means alot to me x

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how did it go? hope it was okay!? Have the docs looked into how well his immune systems working?

ally

[yaf_user681_23350]

Hi has Jimmy been tested for cystic fibrosis? Matty had to be tested as he had problems with lungs and thriving. If not it's a simple test where they collect sweat and test it, trouble is Matty only managed to collect enough sweat for one test so we never got the full answer and I still wonder if this could be part of his problem. It's just best to rule every thing out. It does all take time. Good luck

Kate

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Hi Ally

I think Jimmy has had most tests there are im not sure how many more things they can think he has to be honest. We are just waiting to for the 28th of july when we are back up at Addenbrookes for Allergy tests to be done.

Ashely

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Hi Kate

Yeah Jimmy has had 4 tests for cf all neg !

Thanks for the help x

[yaf_user681_23350]

Hi I know how frustrating it is, we had to wait 9 years for a diagnosis and even then it was a bit sketchy, just follow your instincts that's the best idea, and if your not happy, shout, scream, do what ever you have to to get help for your Son. We got a nebuliser for home use and this saved my Sons life on many occasion as our hospital just didn't have the experience to deal with my Sons asthma, when in doubt we dial 999 to get oxygen.

Good luck, your not alone

Kate x

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Scream shout and look like a mad woman thats what i think i look like lol

Thanks for the advice i will carry on like i am is the best way i think.

Ashley xxxxx

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Might sound daft, but has he had his swallowing reflex tested. My god daughter had recurrent chest infections and pneumonia and was treated as asthmatic for about 2 years before they did a swallow test and found she had an unsafe swallow. This caused lung damage through infection and she is now treated as a child with small airways disease and bronchiectasis. They eventually stopped treating her with steroids as they decided she doesn't have asthma and she started prophylactic antibiotics and has IV ab's 3 monthly. She is treated as a child with CF even tho she has tested negative and does not have any bowel issues. This treatment reigm has pretty much kept her out of hospital for the past few years. She was regerred to great ormand street and it took a whole a battery of investigations to find out what the problem was. They just kept going till they found something. Hope you get to the bottom of it. I know how frustrating it is to not know what is causing the problems.

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We have had similar experiences at this hospital. To say I am outraged is putting it mildly. They want to blame my daughter's other conditions for rhe fact they cannot control her severe asthma. They also cannot seem to make up their minds regarding treatment and it changes from appointment to appointment. My daughter is on her 9th severe attack since mid-May and they don't seem to care.

[yaf_user681_23350]

We are under a different hospital but my Son has severe and difficult asthma. When his asthma kicks off I feel very alone and I know I shouldn't feel this way but there seems to be no help when we need it. We are often left to treat a very sick child by ourselves and the pressure is just awful.We still don't have any answers after 10 years of this and feel we never will have.

Good luck and hope all goes well

Kate x

[angievere]

Rattles - I know what you mean. Last year George's asthma was terrible and no one seemed to know what to do.(Like others here, he sometimes doesnt wheeze etc, and his asthma has been described as 'brittle and difficult'.) Once I was back at the surgery for the umpteenth time and a different GP just shrugged and more or less said she had no idea what to do and I should ring his consultant! It really shook me up. Another locum was rude and just said she couldnt help and to come back next week! I think they were completely out of their depth.

And another time our usual (nice) GP more or less told me he had no more ideas how to treat George and that it was bad luck and we just had to tolerate it. He said 'what do you want me to do?' I know it's difficult for them but does make you feel very alone as a parent. My husband is supportive but away at work all the time, and I am more or less 'left to it'. I nearly broke down last year, the only thing that kept me going was that I had to be strong for George and keep fighting. I have to say the home nebuliser has been an absolute godsend.