New to everything

[anonymous]

Hello All,
My son was diagnosed with CF when he was 3 weeks old. He is now a little over 2 mos. His doctor has been great. He is on enzymes, salt, Vitamax (my son did not like the ADEK), zantac, enulose, and just started an oral antibiotic. He is currently in the 75 percentile for weight and length. But he just recently developed a pretty horrific cough. Obviously-like for all of us-this has been a nightmare. I have promised to live by "us having cf" not "cf having us". I say "us" because this is a family diagnosis...not an individual diagnosis.

My son coughs about every 10-15 min. The doctor via the phone has called his cough a "cold". After reading some of the other postings I am a little nervous that ther may be more to this cough then just a "cold". Should I be worried?

I guess what I am really looking for is support. I am a brand new mom...and this is something I never imagined. When the Dr.'s diagnosed our son I had never really heard of cf before. Now that I am learning about it I tend to be VERY protective of my son. If I had just one wish to be granted or one prayer that could ever be answered it would be that my son would never feel the symptoms of cf.

Thanks for any replies.

Melissa
1 son 2 mos w/cf (Caleb)

 

[anonymous]

Welcome!
Does your son have a cold? Does his nose run? Have they done a throat culture to see if bacteria is growing?

My son had a similar, dry cough. He pretty much had it right from birth. The doctors kept putting him on antibiotics and it did not go away. When he was about 6-7 months old another cf parent on line said it might be a reflux cough. I asked the doctors to put him on Prevacid and his cough went away for good. He had been on Zantac since birth, but it didn't help. His cough also could have improved because he was sitting up more at that time, but it definitely was related to reflux.

My first born also was diagnosed with cf. We were shocked in that we didn't know cf ran in the family. I was very protective of my daughter during her first year. She was very social and I was afraid to take her anywhere. It wore me out and finally I just decided she (and I) were both missing out. I did follow the doctor's advice and I kept her out of mother's day out, Sunday School etc. until she turned two. But she went to play groups, music class, swimming lessons, etc. When my second born was diagnosed I knew that we were just going to have to live life and not stress about keeping them at home. I just made sure we washed their hands and would try and avoid anyone who was sick. They are now two and four and they go everywhere, are very healthy, rarely get colds and go to preschool a few mornings a week.

You are doing a great job. It is good that you are looking for other possibilities besides a "cold." Doctors unfortunately don't know everything. Cf parents have often offered me a lot more advice on taking care of my kids than I have received from the cf clinic. Hopefully, his cough will go away soon. E-mail at sdelorenzo@sbcglobal.net I want to give you some other sites on-line to go to.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

Sharon-Thank you so much for your info. You know it is interesting what you bring up with reflux. Because when he was about 5 weeks old he got put on zantac because he was gagging a lot. He hates the zantac and it does not seem to help at ALL! But I have made a note of the prevacid you mentioned. My son has not had a runny nose or any other symptom of a "cold"...just this yucky cough. We will go to the dr at the clinic again on Tuesday. Thank you so much for your encouraging words. I have wrote down your email address and here is mine as well: melkees321@hotmail.com

Thanks again,
Melissa
1 son 2 mos w/cf

 

[anonymous]

Sharon,

I forgot to mention that the clinic has done a culture. It was done at his last appt and we have not heard of the results yet. Maybe we will know on Tuesday...I am sure we will.

Melissa

 

[anonymous]

Melissa,

I just wanted to lend you support as I know how scary everything seems to you right now. Our son was diagnosed at 3 1/2 months after some horrible vitamin deficiencies, protein loss and swelling and a myriad of other scary thing last year. We are just now coming up on the anniversary and it is getting a bit better. I felt very prostective last winter and didn't want to venture out much. But I have an older daughter and had to take him out when she was involved in things. As we approach "respiratory season" I feel some of those same feelings coming back. I have some bad days still, but I just can't stay there too long as I feel it could consume me. I must have hope like you mentioned and learn to enjoy the easy times, act when needed, and stay away from thinking about the possible future too much. It is a juggling act for any mom, especially a first-time mom. Just know your not alone in you concerns and we are all connected. I hope his cough stops soon. Ben had horrible reflux and Pepcid (syrup) helped him immediately...if they mix it for you, you can ask them to add a little Stevia or natural flavor to it. Make sure it isn't artificial sweetner or color as this is not good for anyone, much less our little guys.

Feel free to email me at jody@meta4tech.com anytime you need to talk (please don't think I didn't get it if it takes my a little while to respond...we just changed internet providers and I am still trying to figure out why I can't email out)



Jody Ben w/cf 15 months; Julia 5 1/2 w/o CF

 

[hopefulCFmom]

Hi Melissa

My 2 year old daughter Emma was diagnosed at 6 weeks. We were soo shocked, depressed, sad. I'm sure you know exactly what I'm talking about.

As far as the cough, Emma had a bad cough in January when she was 5 months old. It turned out to be pneumonia It scared me soo much. They gave her albuterol and antibiotics. We started doing the neubulized treatments with the albuterol. It was the worst, because she was so little and she hated the treatments. She recovered very well though and the cough went away after 1 week.

I would probably keep him indoors for most of the flu season, specially the mall or closed places. My family has come to love and dearly enjoy the summer. We went everywhere this summer with the kids. But we know that fall/winter is our slow time.


I'll pray for the best for your son. Hang in there. Things do get easier to deal with. You can e-mail me whenever you want.

Take care,
Mayra

 

[anonymous]

Melissa,
Are you doing CPT? With a cough that frequent four times a day may be neccessary, whether it's a cold or not. Most of us know how you feel and what you're going through. Hang in there. Sometimes I feel so sad for my daughter if she's hooked up to her vest with her fish mask on and she's coughing and looks so small and pitiful and then she'll see me looking at her and get excited and say, "Mommy! Read to me, sit with me!" She could care less about all she has going on, to her it's just normal. In a sense, sometimes when they're young, they don't feel CF the way we think they do.