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Old 07-09-2010, 12:46 PM   #1
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New and looking for info

Has anyone heard of the the combination of these mutations and what we can expect from it. Delta f508/c.2657+2_2657+3insA. My 3 month old granddaughter was diagnosed with CF at 2 weeks old with a positive sweat test of 72 and this is the combination of genes she has. She is pancreatic sufficient and showing no symptoms. Any info would be greatly appreciated.

 
Old 07-22-2010, 07:54 PM   #2
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Re: New and looking for info

Dear not2 worry: My grandson was diagnosed at 6 months (sweat test 58) with the same gene combination as your granddaughter. He had no symptoms and had returned a negative heal ***** test. He is now 22 months and has had no symptoms. I have found 3 cases - all were diagnoses in their twenties and early thirties at fertility clinics and had no other symptoms of CF. So here's hoping.

 
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Old 07-23-2010, 04:21 AM   #3
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Re: New and looking for info

It's so good to hear of someone else with this combination and to hear that he is doing fine. I had only found the same info as you about the males with fertility issues. I just know that the first time my granddaughter comes down with a simple cold we are probably going to panic. How did your family deal with this.

 
Old 07-23-2010, 05:31 AM   #4
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Re: New and looking for info

Must admit his first respiratory virus was a little scary. However he has cleared all upper respiratory tract viruses like any non affected child. My daughter usually starts him on antibiotics immediately she hears slightly wet coughing. Has had a couple of precautionary throat swabs but all negative for any nasties. Actually this winter he has had fewer colds (and shorter duration) than his cousins of similar ages. He is pancreas sufficient thus far and doing all the normal things that 2 year olds do. (Tantrums included). His parents start physio and hypertonic saline when he has a respiratory virus as instructed by their respiratory physician. Although a sweat test of 58 puts him in the borderline area, his respiratory physician treats children who fall into this category with antibiotics, physio and hypertonic saline during times of exacerbations just as you would classic cf. I don't know if this is the standard treatment or not.
Don't freak out however, if your doctor recommends this. It's manageable.
These sessions have become a bonding time with my grandson and his father. They watch DVD's and cuddle. Wish you the best of luck and fingers crossed.

 
Old 07-23-2010, 06:00 AM   #5
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Re: New and looking for info

The Dr has my granddaughter on saline/ventolin treatments 2 X daily as a "preventative measure." She said that even if the baby never needs this, it won't hurt her to have it. My daughter is also supposed to do the physio as a preventative but she's finding it a little harder doing this because the baby hates it. She screams the whole time so the physio doesn't get done for as long as they would like. She loves the nebulizer though,; spends the whole time licking the mist.

 
Old 07-23-2010, 06:17 AM   #6
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Re: New and looking for info

My grandson started on the same programme. However as time progressed and he showed no coughing or other symptoms, the Dr. decided to reduce the treatment to only when he has a cold or respiratory tract virus. He has 6 monthly check ups, but his parents usually get a throat swab done if he coughs for more than a fortnight. Fortunately this has only happened twice and both swabs were clear, as I said before.
The poor little fellow hated the Nebs when he first started at 6 months but grew to accept it. He never seemed to mind the physio though. Now he seems to accept that it is non-negotiable.

 
Old 07-23-2010, 09:20 AM   #7
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Re: New and looking for info

It's important to be proactive and agressive despite there being no symptoms. CFers are born with normal lungs; however due to extra thick mucus, infections, etc. eventually the lungs will become affected. So it's important to do chest physiotherapy, nebs, contact the doctor at the first sign of a cold or cough before it can turn into anything worse.

 
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