I actually scared for the first time ever!

[piglettsmummy]

I am normally very good with dealing with wat my dd goes through. She has been undiagnosed ( since she was 2daysnold) with a breathin control issue. I KNOW what it is and after speaking to a doctor he believed me and has ran every test under the sun to rule out complications. Long story but the condition she 'does have' she tested negative for ( doesn't mean she doesnt have it though) he has been do helpful! But we had to be switched to a different doctor as the good one is moving at Xmas. This new doctor is sh*t basically I've seen him before! He's a money counter and hates bed blockers (aka my dd) anyway I have just found out the old doc has refered her for a holter test which tests for one of these complications which comes hand in had with the condition. I feel so scared as of it is all real, he believes she has it and so do I Infact I'm certain but the fact that she's been treated as she has it scares me to death! Ie had 2 years to get my head round it and.. Well .... I feel like crying I'm sorry for the pointless post but i needed to tell
Someone! I haven't felt this scared since I was told she had somehow cheated SIDs :'(

I'm sorry your going though this.
Can I ask what the condition is?
There is a big difference between thinking and knowing our kids have these condition, to having a professionals confirm it. I sobbed my head out when DDs were dx with autism, and I knew already. But it's still very very hard.
Take care of yourselves and take your time x

Hi the condition is CCHS we no she has it many opinions are that she does have it she it's all he diagnostic criteria but for some reason true doctor won't say the words!! I think knowing she is having this test tomorro that is common within CChs kids has done it! Makes It feel real! X

I have no idea what you must be going through piglet but keep coming on here to let it out.

Honk Honk

I have a friend whose child tested negative for CCHS but did turn out to have it. Not an easy road to walk at all. I, too have a child who "has" a disease, but doesn't "have" the disease... I try not to remember the journey we took to get to where we are now...

It is a very hard journey and I think until the diagnosis is finalised I won't be able to forget I am interested to no how did they decided to diagnose in that case??

Based on symptoms and non-genetic test results. She was observed in hospital for weeks, and shipped off to several other hospitals before they finally decided that she had CCHS. She still uses non-invasive ventilation, but they are discussing trach/vent before she starts school next autumn.

Ahh ok we're under SCH they've never had a
CChs case ( as far as I'm aware) I'm getting more and more agitated as the time goes on I got called into hospital today so they can set her up for a holter test x