Looking for other CF Parents

[Logansmom1019]

Hi

My name is Krista. My son, Logan was diagnosed at 2. He just turned three. I was watching a film in Biology class about Gene Disorders. I immediately came home and called my doctor and requested a sweat test. He was being treated for asthma but I knew deep down there was something else wrong. I thank God I didn't miss class that day. I have read so many cases were children are diagnosed so late. If I didn't see that film I do not believe he would be diagnosed today. The doctors have said he has a "mild case". Whatever that means. He is actually receiving antiboitics at home now because he had a positive throat culture for psuedomonas. We only spent two days in the hospital. They say the antiboitics should kill it off and he will be ok. If anyone can help me with additional info about this, please write me. Like I said, this is his first major illness associated to the CF. I read terrible things about liver and lung transplants for young children. I feel for these families. I know how hard it is to live with this diease. Sometimes I feel so afraid and helpless. I think of the future and what it holds for my son.

He is growing ok, not too small, but he is giving me a problem eating recently. I would like to know about the medications other CFers are taking. Logan is only taking albuterol before his chest therapy twice a day, enzymes and vitamins. I want to make sure he is getting all the medications he needs, even if insurance won't cover it. He has the G551D and N1303K mutations. If anyone or any parent's child has this combo please email me. I know everyone is different but perhaps the combos are at least a little similar.

I would also like to know about any groups in North Carolina. I live in Boone and there is really nothing here and no one I can talk too. I am pretty much alone in this. I do speak to one lovely lady named Evelyn in PA. She has given me alot of info and encoragement.

God Bless you all and let's Fight for the Cure!

Thank you for reading this and taking the time to listen to my story.
Please email me at Logansmom1019@yahoo.com. With any info or just to talk, it is nice to have someone that can relate to you.

 

[rose4cale]

Hi and welcome Krista. My name is Shelly. I have a son Cale that was diagnosed at 18 months. He will turn 3 on the 27th!! We're so excited for his birthday! We have been very fortunate with Cale's health. He was about 17 pounds when he was diagnosed and now weighs 33.5 pounds! He hasn't had any major infections and has done oral antibiotics for an occasional illness. He does enzymes, ADEKS, zantac and a liver med. I also believe if I hadn't pushed my Dr that Cale wouldn't be diagnosed yet. A Mom just knows...<img src="i/expressions/rose.gif" border="0">

Feel free to email me at michelleb7265@msn .com

 

[Seana30]

Krista,Welcome to the group.  I have a 13 yr. old daughter that was not diagnosed till the age of 10.  We finally had her diagnosed when I stomped my feet and yelled like a child and said "I WANT TO KNOW WHY MY 10 YR OLD DAUGHTER ONLY WEIGHS 48 POUNDS AND HAS HAD NON STOP TUMMYACHES FOR FOUR YEARS".  I finally had a doc take me serious and we had a sweat test done.Courtney's mutations are DF508 and unknown.  She also has the M407V polymorphisone, but I still to this day do not understand what that means exactly.  She takes enzymes (Ultrase MT20......6 with meals, 4 with snacks) Albuterol, Flowvent, Vitamax, Aciphex, and Cyproheptadine to increase the appetite.I was told that taking Achipex ( an antacid) helps the enzymes work better, so you might want to discuss that with your doc.I was also told that Courtney has a "mild case of CF" but that really confuses me.  No one can seem to answer me when I ask what exactly it means when you have a "mild case".Courtney has had very few lung issues.  She was diagnosed with a slight case of asthma, but her PFT's are always great.  Her main issues are digestive.  She is still very thin.  She is 13, is 4 feet 1 inch and weighs 73 pounds.  She is normally to thin to even be in the 5th percentile of the weight charts.Again, welcome to the group, and hope to talk with you soon.Seanamom to Lauren, 14- no CF  Courtney, 13- with CF  Cameron, 10- no CF

 

[anonymous]

Hi Krista,

My anme is Amy and I have a daughter, Allie, with CF. She just turned 4 a couple of weeks ago. She was diagnosed when she was 2 1/2 yrs old but it should've been much sooner. Her pediatrician didn't take her belly aches too seriously and they totally treated me like a hyper first time mom. Anyway, I live in NC too. I'm in Durham but my brother goes to Appalachian so I'll be visiting Boone some this year. He's a freshman.

Allie has always been very healthy with no lung issues until a couple of weeks ago. She cultured pseudomonas for the first time. They treated it with 28 days of inhaled TOBI. We do chest PT twice a day, ADEK vitamins, Ultrase MT 20 enzymes and Prevacid once a day. The enzymes weren't working that well until we started the Prevacid.

I plan on emailing you soon b/c I think we'll have a lot in common but I've been so busy it may take me awhile. Feel free to email me first at amyplymale@earthlink.net.

Take care and hang in there.
Amy (mom to Allie 4 w/CF and Betsy 16months/no CF