Message Boards for the CF Trust

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rustycharlotte

Posts: 9
From: burnley
Registered: 04-Dec-2006

Mild CF?
Posted: 04-Dec-2006 19:40

Reply

Is it ridiculous to ask if there are mild forms of CF?
The reason I ask is that my baby (2 year old boy) appears to have some symtoms but not others. He has breathing difficulties (which we thought was asthma) but has other symptoms such as bowel problems i.e he has never passed a solid stool since birth - it is like diarrhea). He also has an excessive thirst. He also has a large abdomen. To me, he has always been a healthy boy but the medical profession are now suggesting otherwise. We are waiting for a sweat test but I wanted to ask for some views here. Everyone who meets my son say that he is full of life and energy which makes me question the CF theory. But I am guessing he doesn't have to have all the symptoms to have CF?

sally 1

Posts: 128
From: oldham
Registered: 09-Nov-2006

Re: Mild CF?
Posted: 04-Dec-2006 20:42

Reply

some genes produce more mild/severe symptoms. I'm not sure which ones and which but, yes, there are milder forms of cf.

sal

sazg

Posts: 48
From: Rotherham
Registered: 05-Nov-2006

Re: Mild CF?
Posted: 04-Dec-2006 21:02

Reply

We were told that our daughter Leah 15 months has a mild form of cf she has genetic mutation d508f & r117h she is pancreatic sufficient and doesnt seem to have many problems with her chest, she has has a few bugs but nothing oral antibiotics couldnt clear. I think it also goes on the individual aswell it doesnt just go on the genetic mutation. We also give Leah probiotic called Solgar ABC Dophilus powder, that helps with stools too. I think ladybird will second that.

Hope that helps a bit.

Take care
Sarah
xxxx

kaye

Posts: 25
From: lancashire
Registered: 05-Nov-2006

Re: Mild CF?
Posted: 04-Dec-2006 21:12

Reply

Hi,

My daughter is another Leah (10 months), she has 2 F508del genes, and has severe pancreatic insuffiency. We were told this is associated with a severe form of CF due to it being 100% defective (something to do with the CFTR - Cystic Fibrosis Transmembrane Regulator?! and the protein (or lack of) )

Hope you get the appointment you need. Just wanted to say we are from Haslingden (very near Burnley) and attend Burnley hosp and have shared care with Booth Hall. If you want a chat i use MSN messenger, and my email is Kaye_2k@hotmail.com .

Hope you get the news you're hoping for and you get answers very soon. The waiting is awful.

Take care, K xx

rustycharlotte

Posts: 9
From: burnley
Registered: 04-Dec-2006

Re: Mild CF?
Posted: 04-Dec-2006 21:17

Reply

Thanks for that Sal.
I appreciate your help.
Lisa x

rustycharlotte

Posts: 9
From: burnley
Registered: 04-Dec-2006

Re: Mild CF?
Posted: 04-Dec-2006 21:21

Reply

Hi Kaye,

I will sort my computer out and install messenger as I don't think I have it right now and I will email you soon. Thanks for you info and your supportive words, I really do appreciate it.
I hope Leah is doing ok.
Best wishes
Lisa x

rustycharlotte

Posts: 9
From: burnley
Registered: 04-Dec-2006

Re: Mild CF?
Posted: 04-Dec-2006 21:23

Reply

Hi Sarah,

Thank you for responding.
I cannot claim to understand the genetics of CF yet but I take on board what you are saying and will endeavour to learn more.
I do hope Leah is ok.
Thanks again,
Lisa x

sazg

Posts: 48
From: Rotherham
Registered: 05-Nov-2006

Re: Mild CF?
Posted: 04-Dec-2006 21:47

Reply

I do not understand the genetics of cf lol we give leah the probiotics to replace the good bacteria that the antibiotics kill off in her stomach. i am still learning stuff about cf. Lets keep our fingers crossed for the gene therapy trials.

hope your little boy is well feel free to e-mail me at sazg@msn.com.

Take care
Sarah
xxx

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006

Re: Mild CF?
Posted: 04-Dec-2006 22:00

Reply

My daughter and son have exactly the same CF genes, and yet my daughter's CF is mild, and my son's is very severe. It's a total lottery, whatever hodge podge of genes get mixed together with the CF genes.

Good luck for your son's testing.

Becky xxx

young mummy1

Posts: 39
From: Burnley
Registered: 05-Nov-2006

Re: Mild CF?
Posted: 05-Dec-2006 09:42

Reply

Hey rustycharlotte,
Where abouts in burnley you from? Maybe yo need to wait till the sweat tests come back before you plague your mind wi all sorts of things. Oh yeah on your original post you said everyone who sees your child says he is full of life and energy so that makes you question whether is cf of not just because children have cf doesnt make them any different my little boy noah is more hyperactive than anyother child i know and is up till well late at night running amok round us he is full of beans and he know it i just dont want you getting any pre conseptions of what cf is, anyways hopefully his sweat tests will say negative.

Lots of love Lisa x

cupcake

Posts: 141
From: england
Registered: 02-Mar-2004

Re: Mild CF?
Posted: 05-Dec-2006 09:59

Reply

There are people who have milder forms of cf but I don't think it is specifically down to what cf genes they have. As Becky said it is how the defective cf genes mix with the other genes in the body, and 2 children with the same combination can show very different symptoms and very different forms of cf severity.

It is all a bit of a lottery and some people aren't diagnosed until their teens and beyond sometimes, so it is possible to have very mild forms of cf. That said it is best to start treatment early even if there appear to be no, or very mild symptoms.

I hope you get your sons results soon as the waiting must be awful. I hope he gets the all clear but if not at least you know he can start his treatment and stay as well as possible for as long as possible.

rustycharlotte

Posts: 9
From: burnley
Registered: 04-Dec-2006

Re: Mild CF?
Posted: 05-Dec-2006 21:59

Reply

Hi Lisa,

Thanks for your reply. I read with interest your comment about Noah's hyperactivity. Because I have taken the suggestion of Owen possibly having CF so seriously, my friends and family are trying their best to remain positive and keep trying to throw me shreds of hope. It is their take on his level of energy that has convinced them that Owen is alright and could not possibly have CF. I understand their point of view and what they are trying to do but I appreciate that all people are different and that presentations of CF can be totally opposite. You are right though, I am allowing myself to be plagued with worries and thoughts all the time. I am grateful for the support of all the people who have replied. I raved about the site in work today and I found the feedback from people last night to be very comforting.
Thanks again Lisa and hi to Noah from me and Owen!!!

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006

Re: Mild CF?
Posted: 05-Dec-2006 22:24

Reply

I don't really think energy has anything to do with it. My son is 27 months old, and has had a really rough two years with his CF, but he's got more energy than me and my hubby put together! He runs rings round us when he's well enough!

Becky x

youngmummy

Posts: 10
From: Burnley
Registered: 06-Dec-2006

Re: Mild CF?
Posted: 06-Dec-2006 09:38

Reply

Hi Lisa,
Before Noah was diagnosed we took him to the A+E because we was sick of the doctors palming us off saying it was this and it was that and it was a milk intolorance you know when there is something wrong seriously wrong. So anyways we took him and they took him in coz i was saying he is crying all the time, he is not drinking his milk, his nappys are horrendous, anyways we got there and he had every bottle we give him he was smiling at the consultants al contented his nappys were just normal he wasnt coughing is only when i said he was salty that they i got raised eyebrows i felt a real time waster! Even then when his sweat tests come back abnormnally high they still werent convinced coz he was normal weight of a baby that age even tho he had obv stomach problems its coz we fed him so little so often, so they did another one and it was even higher, so sometimes things arent as they seem. But Cf hasnt changed him i think he knows he is different and seems to play off it being cheekier than ever.
How old are you? if you dont mind me asking i might know you thats all living in Burnley and that.

Lots of Lisa and Noah who is Zzzz as we speak. x

dyza

Posts: 24
From: Port glasgow
Registered: 08-Nov-2006

Re: Mild CF?
Posted: 06-Dec-2006 12:00

Reply

the different gene mutations are classed in a table, class 1 being the most severe. Our son has d508, class 2, and rh117, class 4. Just like Sarahs 15monthold, our son has few symptoms, is pancreatic sufficient and takes 1 anti-biotic and ketovite.

But it is true that genes will behave differently for various unknown reasons, if we were to have another child, whos to say that they would be the same, will look for a link into this table of classes