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Original poster

Latest Update on Charlee's DS: The test results are back he DOES have cystic Fybrosis

24 replies

Charleesunnysunsun · 09/02/2007 15:01

First off let me apologise for being away so long out net was down for ages but it's now fine.

Yes DS does have CF the sweat tests have all come back so we have all been a bit up in the air taking in a ton of info from various dr's and health professionals.
They have also tested DS2 but thoses results wont be back for a while.

I kind of suspected it so i wasn't shocked but still completley gutted. Were still taking it all in and letting it sink in aswell.

OP posts:

Blandmum · 09/02/2007 15:05

Oh, I'm so sorry. I can fully undertand that you feel gutted, even thought you had suspicions.

Are you getting the support that you need at this time?

Sending you lots of hugs

VioletBaudelaire · 09/02/2007 15:06

Thinking of you all charlee.

VeniVidiVickiQV · 09/02/2007 15:07

oh im so sorry to hear this

hoxtonchick · 09/02/2007 15:07

Aloha · 09/02/2007 15:08

I am so sorry you've had this news. How is he doing at the moment?

pinkchampagne · 09/02/2007 15:08

Sorry to hear this, CSS.

MrsGordonRamsay · 09/02/2007 15:08

Oh sweetheart.

misdee · 09/02/2007 15:13

oh charlee.

have you made contact with the CFA?

mygirllolipop · 09/02/2007 15:18

Message withdrawn

Debbsyandson · 09/02/2007 15:18

oh charlee so sorry hun xxx

itsmeNDP · 09/02/2007 15:25

Thinking of you all.

staceym11 · 09/02/2007 15:46

oh charlee, love and hugs from all here to all there! hope you get the support you need!

nutcracker · 09/02/2007 15:47

Sorry to hear this Charlee.

saralou100 · 09/02/2007 15:49

oh charlee, so sorry. have been thinking about you and your boys! seding all you our love xx

podglet · 09/02/2007 15:57

Charlee, so sorry to hear news. Was also beginning to wonder where you were and how things were going. Sending lots of hugs xx

nogoes · 09/02/2007 15:58

Sorry to hear this. Take care.

Hulababy · 09/02/2007 16:05

Sorry to hear your news Charlee.

Original poster

Charleesunnysunsun · 09/02/2007 18:40

Hi thanks for all your messages.

Im not sure how i feel just yet i'm obviously upset but, i think i'm sort of waiting for this rush of emotion to suddenly hit me.

DS is currently fine apart froma little cold. He is having alot of medication, several different antibiotics and next week he will start the enzymes to help him digest his food, he will also be starting physiotherapy next week as well.

We are getting terrific support from the local hospital and have met a great team of people who will apparently be there with us through the whole thing.

We are going to have a community nurse from the Snowdrop childrens charity come out to see us and we have been given a respitory nurse and physiotherapist and a dietician.

We have had to switch his diet to an extremley high fat one which was strange after 2yrs of trying to limit fat and now i have been told to load him up on it!

The one thing we have made clear to everyone is we would like DS to be treated like any other child and that we are open to questions and chatting about it, we don;t want to be treated differently becuase of this.

Now all we can hope is DS2 doesn't have it. I had a strong mothers instinct that DS1 would test positive but i don't have it with DS2 so i'm at least hopefull.

OP posts:

Saggarmakersbottomknocker · 09/02/2007 18:43

Charlee - sorry to hear your news but pleased that you are getting support and sounding so positive.

lulumama · 09/02/2007 18:47

just want to add my support to you x you sound like you are able to get your head round this at the moment..hope you are getting lots of support, xxxx

Califrau · 09/02/2007 18:51

This reply has been deleted

Message withdrawn at poster's request.

KaybeeandZak · 09/02/2007 21:04

Charlee, so sorry to hear about your DS. Thats good that you are getting so much support.

onlyjoking9329 · 09/02/2007 21:18

sending you my best wishes, it will take a while to get your head round the diet, but it can be done i used to know a lady who had two boys with CF and they are doing really well with lots of physio. they are teenagers now.

LaDiDaDi · 09/02/2007 21:30

I'm sorry to hear your news which must be very difficult for you despite your suspicions.

It's great that your hospital are being so supportive.

Good luck for the future.

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