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From England
- Thread starter anonymous
- Start date
cfgirl2008
New member
Do you mean talk english or English hertirage people?
Tiffany 15 w/cf
Tiffany 15 w/cf
im from scotland i found out about my daughter having cf about ayear and a half ago it was just horrible......i never new anything about cf.
my daughter is 4 and a half now and is doing fine, always has been doing great.
at the time we found out.. i was carrying my second child........she got tested when she arrived she does not have cf and is not a carrier.
iam expecting again and just hoping for the best.............it is a horrible thing to deal with but in time u adjust to everthing and deal with everthing as it comes
all the best
my daughter is 4 and a half now and is doing fine, always has been doing great.
at the time we found out.. i was carrying my second child........she got tested when she arrived she does not have cf and is not a carrier.
iam expecting again and just hoping for the best.............it is a horrible thing to deal with but in time u adjust to everthing and deal with everthing as it comes
all the best
<img src="i/expressions/face-icon-small-confused.gif" border="0"> that's how me and my husband felt twelve months ago when our daughter was diagnosed with cf. All I can say is that it does become easier, especially trying to get into a regular daily regime of physio and medicines. Our daughter is now a happy go lucky little girl and always has a smile for us even, when under the weather. Keep your chin up it gets easier to cope with, especially when everything has sunk in. Would like to know how you get on. Sarah mum to Molly with cf.
My daughter is 12 and was diagnosed with cf at 7 days old. I would love to talk with you and help in anyway. Out of five children she is the only one with the disease. Feel free to e-mail me at DaHosa6aol.com It is hard to take it all in at first, but it will become easier as time goes on.
Welcome-
Sorry to hear about your son's diagnosis. I do know of a on-line cf parents group from England. The CF Trust address is
<a target=new class=ftalternatingbarlinklarge href="http://www.cftrust.org.uk/scope/page/view.go?layout=cftrust&pageid=169
">http://www.cftrust.org.uk/scope/page/view.go?layout=cftrust&pageid=169
</a>
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
Sorry to hear about your son's diagnosis. I do know of a on-line cf parents group from England. The CF Trust address is
<a target=new class=ftalternatingbarlinklarge href="http://www.cftrust.org.uk/scope/page/view.go?layout=cftrust&pageid=169
">http://www.cftrust.org.uk/scope/page/view.go?layout=cftrust&pageid=169
</a>
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
Things seem better already, its so true what you say about time and understanding. Henry has been into hospital twice for IVS in the last 4 months, he is so much better, with energy and appittite and mood. He is lucky at the moment as he in pancriatic sufficient, long may this last. H has gained weight, although his cough has returned. Will keep you updated.
Regards
Nicola
with Henry 4yrs cfer
Regards
Nicola
with Henry 4yrs cfer
How do you find out later that your child has CF? Did she just suddenly start having symptoms or did she have problems before? I ask as I have a baby son diagnosed with CF at weeks old and is now 11mths. I also have 3 older daughters, so I have a fear that one of them may suddenly become ill & also have it, I asked about getting them tested, but at the moment they are not concerned & said they only need to be tested if they want or before considering starting a family. I just wondered how you found out?
Regards
Shirley Crosbie mum of Kieran 11mths w/cf
Regards
Shirley Crosbie mum of Kieran 11mths w/cf
Shirley,
I was in a similar situation as you are now, in that my youngest is the one with CF. My two older daughters were sweat tested within a month of Samantha's diagnosis. My oldest has had asthma problems, and my middle daughter has also had some sinus issues and occasional coughing issues.
Both tested negative with the sweat test. It gave my husband and I peace of mind. Occasionally, when either one of them are sick or having asthma issues I still worry, though. I am considering getting the genetic tests done in the near future. In my heart, I'm sure they don't have CF, but a definitive genetics test result would erase all my occasional "paranoid" thoughts.
Maria (mother of three daughters, the youngest, Samantha w/cf)
I was in a similar situation as you are now, in that my youngest is the one with CF. My two older daughters were sweat tested within a month of Samantha's diagnosis. My oldest has had asthma problems, and my middle daughter has also had some sinus issues and occasional coughing issues.
Both tested negative with the sweat test. It gave my husband and I peace of mind. Occasionally, when either one of them are sick or having asthma issues I still worry, though. I am considering getting the genetic tests done in the near future. In my heart, I'm sure they don't have CF, but a definitive genetics test result would erase all my occasional "paranoid" thoughts.
Maria (mother of three daughters, the youngest, Samantha w/cf)
Shirley, I honestly can't believe (well, I can after hearing horror stories on this site) that a doctor would be ignorant enought to tell you that you don't need to worry about testing your older children! Sure you should get them tested! Even if they aren't showing signs/symptoms, some CFers who were diagnosed later in life had little or no symptoms until their late teens-early 20's. if you older kids are really healthy, you really don't have too much to worry about, But if by chance one of them did actually have CF (would be rare ocnsidering what you say about their health, but still possible) they would be deprived of many many years of appropriate treatments. It's a topic I would revisit with your doctor.
Maria, out of curiosity, do you know what samantha's mutations are? If so, I am sure you already know that you older children could be genetic tested (providing they have the same biological fathers) against samantha's mutations. If her mutations have not been identified, in the past I would have recommended ambry genetics-BUT.... I recently learned that Quest diagnostics (a well known, reputable laboratory) also has a CF mutations test that is comprable, if not better than Ambrys. Additionally, Quest Diagnostics is known by doctors as well as insurance companies and you might have better luck doing genetic testing through quest. Just an idea/recommendation.
I inquired with Quest diagnostics so I could update/eliminate inaccurate information from my CF infertility website (www.cysticfibrosismaleinfertility.com) and this is the response that they gave me. I specifically requested they tell me how theirs differs from Ambry, so they didn't just "bad talk them" for no reason, I asked for the comparison.
<i>The Medical Director of the Genetic Testing Center at Quest Diagnostics
Nichols Institute was able to respond back to your inquiry regarding testing for
Cystic Fibrosis Carrier/Diagnostic testing.
He responded back by stating "the ambry test is called gene scanning and is a
crude way of scanning the entire gene for the presence of any mutation. Once a
potential fragment has been determined to have a potential mutation, that
fragment is sequenced. Ambry calls their test a "sequence based test" but it is
not a DNA sequencing test."
"Quest Diagnostics offers CF Complete which is a complete sequencing of the
entire CF gene. Coupled with our new deletion CF test, we would detect >99% of
all CF mutations."
Thank you once again for contacting Quest Diagnostics.
Sincerely,
Iris Underwood
Branch Operations Manager
Quest Diagnostics San Diego
Tel: 619-686-3053
Fax: 619-686-3362
e-mail: Iris.J.Underwood@questdiagnostics.com
</i>
I hope this information helps anyone who is interested
I inquired with Quest diagnostics so I could update/eliminate inaccurate information from my CF infertility website (www.cysticfibrosismaleinfertility.com) and this is the response that they gave me. I specifically requested they tell me how theirs differs from Ambry, so they didn't just "bad talk them" for no reason, I asked for the comparison.
<i>The Medical Director of the Genetic Testing Center at Quest Diagnostics
Nichols Institute was able to respond back to your inquiry regarding testing for
Cystic Fibrosis Carrier/Diagnostic testing.
He responded back by stating "the ambry test is called gene scanning and is a
crude way of scanning the entire gene for the presence of any mutation. Once a
potential fragment has been determined to have a potential mutation, that
fragment is sequenced. Ambry calls their test a "sequence based test" but it is
not a DNA sequencing test."
"Quest Diagnostics offers CF Complete which is a complete sequencing of the
entire CF gene. Coupled with our new deletion CF test, we would detect >99% of
all CF mutations."
Thank you once again for contacting Quest Diagnostics.
Sincerely,
Iris Underwood
Branch Operations Manager
Quest Diagnostics San Diego
Tel: 619-686-3053
Fax: 619-686-3362
e-mail: Iris.J.Underwood@questdiagnostics.com
</i>
I hope this information helps anyone who is interested
Hi Julie,
Yes, we know Samantha's mutations. They were identified by Ambrey Genetics soon after her diagnosis. Since I am of Hispanic origin, our CF team sent her blood work directly to Ambrey because Hispanics often carry rare gene mutations. Well, their hunch was correct. Samantha carries DF508 (my husband is of German/Irish descent) and 406-1 G to A. The latter mutation is quite rare.
But do you believe that by doing my own research online, I found that in California there were 12 reported cases of CF with this mutation, all of people with Hispanic origins. Very interesting!
Anyway, I do want to get my other daughters tested genetically. I've found though, that our clinic is not too keen on this. They feel that my daughters should make this choice for themselves when they are older. I have not pressed the issue as of yet. Do you know how much Quest charges?
Maria ( Sami's mom)
Yes, we know Samantha's mutations. They were identified by Ambrey Genetics soon after her diagnosis. Since I am of Hispanic origin, our CF team sent her blood work directly to Ambrey because Hispanics often carry rare gene mutations. Well, their hunch was correct. Samantha carries DF508 (my husband is of German/Irish descent) and 406-1 G to A. The latter mutation is quite rare.
But do you believe that by doing my own research online, I found that in California there were 12 reported cases of CF with this mutation, all of people with Hispanic origins. Very interesting!
Anyway, I do want to get my other daughters tested genetically. I've found though, that our clinic is not too keen on this. They feel that my daughters should make this choice for themselves when they are older. I have not pressed the issue as of yet. Do you know how much Quest charges?
Maria ( Sami's mom)
mt004h0873
New member
Hi I'm from England also, my daughter is 2 1/2 going on 12 I think. If ever you need to talk feel free to email me at mt004h0873@yahoo.co.uk. I am also fairly new to this site as well. Hope all is going well. Look forward to hearing from u soon. Sarah mom to Molly 2 1/2 wcf