Just found out today

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momsboy
New Member


Date Joined Dec 2007
Total Posts : 2
   Posted 12/27/2007 6:22 PM (GMT -7)   
My Pediatric Pulmanary specialist called me today to let me know my 3 yo son has been tested positive for the CF gene Delta 508 and has to go on the 8th of Feb for a sweat test; please give me some insight!  I am so afraid for my son.  No one on either side of the family has CF.  I am 43 years old would remember if we had the gene.  I just can't find enough information on line...like, can he have CF if no one in his family has it, etc...
 
Desparate in FL.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 12/28/2007 3:04 AM (GMT -7)   
Hi there momsboy, welcome too Healingwell.

It does happen quite often that there are no other cases of CF in the family. Before I was born, noone in my family had even heard of CF. Then my little borther was born, also with CF. My mum has gone back through family tree as far as she can, and there is no record of CF anywhere. I'm pretty sure this is actually too do with CF not really been recognised and understood. It has been around a long time, but the clinical aspects of it, weren't really recognized until the 1900's.

If they have just found one copy of Df508 and no other gene's, it may be that your son is a carrier of CF. For the gene too actually work properly and effect you, you need 2 copies, one from each parent. Unfortunately they can't yet test for every single gene mutation. Which is why they will be doing the sweat test. The sweat test measures the amount of salt in your sweat. People with CF sweat 100% more salt than a 'normal' person. The test is very accurate.



It would be bad if your son does have CF, it's not a nice illness. But, at least you will know what you're dealing with. Some people don't get diagnosed until later on, and have missed out on years of medication and treatment, that your son will be getting. With treatment advances that there are today, they reckon children now, have a much better chance at leading a normal life.

Keep in touch with how you are doing, and feel free to ask any questions you may have.
Best wishes
Gem
Co-moderator in the: Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


momsboy
New Member


Date Joined Dec 2007
Total Posts : 2
   Posted 12/28/2007 9:20 AM (GMT -7)   
Thank you so much for the information; i probably shouldn't be so panicky and should have a positive attitude, it is just hard for me to think of all the problems my son will have. He has been so sick already in the 3 years of his life. He has been hospitalized with pneumoia and rsv once and had the pneumonia 3 times in all. he has asthma and has to have treatments, he is on singulair, doesn't breath well, has allergies and is underweight for his age, although tall. I am at work so have to run, but will be checking in on a regular basis.

Thanks again!

Kim Mc
New Member


Date Joined Feb 2008
Total Posts : 1
   Posted 2/23/2008 9:14 PM (GMT -7)   
Hi, I am a 36 yr old father who has two children with cf. My boy is 5.5 months, and my sweet little girl is 3.5 yrs. We found this out 3 months ago. It has been the hardest thing I,ve ever  been through, and I've been through alot. I do know that we, as parents need to find the positive as much as we can,but we also need to release our sadness, our worries, and our fears from time to time. By having a release of some sort , I then regain focus and something positive comes of it. I feel more alive. Lets face it -THIS SUCKS! One thing I do is constant research on herbs,stemcell enhancement,homeopathy,body talk,acupressure,and so one, Another thing I do is sneak into my daughters room and wisper possitive thoughts into her ear.  You never know,something just might help.I really don't think that modern medicine is the only thing to relly on like so many others you will run into in the future. anyway, good luck, keep your chin up and show your little guy how to hold his. Reply if you have any other suggestions. I really have no one to talk to.

kristen
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/4/2008 12:35 PM (GMT -7)   

Hello Everyone,

Just wanted to say I am so sorry to hear about the diagnosis of so many wonderful children. I am a CFer at age 23. Just wanted to let you know it hasn't always been all sunshine and rainbows, but my life has been a life worth living. I had the best childhood full of memories,in high school i played every sport imaginable and even got to be homecoming queen. Then came college and now I am happy to say I am married only one month to an amazing man, and are exploring the options of having our own family. I know the risks of having my own child with CF and that does concern me, as you only want your child to be healthy, but I think of my life and what I have accomplished and it has been good! So, you hear a lot of scary things, but take them with a grain of salt, there is good out there too. My value for life is so much greater and I appreciate people with differences. I am so much more compassionate! What a blessing to be able to experience life! I wish each of your children a happy, long life! If you need some encouragement and some reality of CF feel free to contact me at miskris10@yahoo.com   I've been a CFer for life and love educating myself with it, so i like to hear from others.


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 3/4/2008 1:16 PM (GMT -7)   
Oh Kristen, that was a lovely post! Welcome too the forums, hope you have fun here!
I'm a 22 year old cystic, also wanting my own family.

Hope you're well
Gem
xxxxx
Co-moderator in the: Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


kristen
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/4/2008 1:51 PM (GMT -7)   
Thanks! I am new to this, but am looking forward to hearing others and exploring CF a little more. Good Luck with family planning so many new and fun experiences await!!!  Let me know how it goes for you!
Thanks Again Gem

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 3/5/2008 12:30 AM (GMT -7)   
Thankyou, and good luck to you too.

I'm already experiancing some of the fun with my 7 month old nephew Kain. Gosh, he's growing up fast, but to watch a tiny person just starting to learn and grow up, and knowing you are a part of that, wow, it is amazing.
I've been trying for about 5 years, but I've had a rocky road. My husband Paul was tested negative for any CF gene's, which was an excellant start. Then I've been left in cold water then, with either help that has been useless or just no help at all for the last 3 years.

I'm an oldie really. Been very linked with CF sites since I was 15/16.

Good luck, and hope everything goes well.
Gem xxx
Co-moderator in the: Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


hawaiimaui
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/11/2008 8:53 AM (GMT -7)   
My husband and I just went through pretty much the same thing. I have 7 year old twin boys. The youngest was diagnosed with asthma when he was approx. 2 years old. In Oct. of last year he was diagnosed with Type 1 Diabetes. A doctor at our clinic suggested that he have a sweat test to check for CF. Below 40 being negative, 40 - 60 being borderline and 60 + being positive, he was 54. His primary Dr. said in her studies it was nothing to worry about. We asked that he be tested again. This time he was 62. Since his results were mixed we were sent to Iowa City for surprise, more sweat tests. Again, the numbers were borderline and positive. Off to genetic testing we went to test for the 1,500 plus mutations of CF. After waiting 5 weeks we finally got our results. He is a carrier of the Delta F508 gene. Thankfully he has a normal gene to balance it out. So, no CF!!! Whew!! So, that also means that myself or my husband is a carrier of the same gene. Eventually his twin will be tested for the gene as well. Iowa City said that my siblings should be tested for the gene, as well as my husbands. Well, I'm an only child and he is adopted so nothing to do there. Should my boys want to have kids in the future their spouse will need to be tested for the gene as well. Have a great day everyone!
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