jdprecious
New member
Well her symptoms started within a month of her being born ( of course I didn't know it at the time) I chose to breast feed her and at her 1 month checkup the doc diagnosed her with failure to thrive... basically malnourished and skinny because I wasn't producing enough milk (which wasn't the case - she just wasn't getting the fats and vitamins)... so I had to supplement with formula and then she got really fat.. but it was cute bc she was a pudgy baby unti she was about 9-12 months and started to grow taller she thinned out some...
but at 6 months I quit breastfeeding and went back to work... so within a months time she lost all the healthy enzymes in my breast milk and was around sick snotty nose kids at the daycare... to say the least it shocked her system and she came down with fevers all the time... had pneumonia ...ear infections... the child threw up so much mucus it was unbelievable her little body could hold that much... I knew it was weird bc she would eat and not vomit any food.. just mucus.. it looked like greenish yellow jello... it was a semi solid... so that was my first clue.. but the docs said she had asthma and allergies and she took a slew of asthma/allergy meds.. but it never worked...
she got tubes put in her ears and her adnoids removed 2 weeks before her 1st bday and that seemed to make a huge difference.. for about 6-8 months she was like a new child... then it all came right back ... the coughing and congestion.. vomiting ridiculous amounts of mucus ... and they never did anything.. I worked at the time for America online.. so I was on the internet all day.. I typed in her symptoms as chronic and they pulled up pages and pages of cf... so in essence I diagnosed her myself before the docs ever figured it out... all along they said asthma and allergies...
so for about 3 yrs we were in and out of docs offices and emergency rooms every 2-3 weeks... and one time I said to my doc.. you know my kid eats like a horse and she is so skinny... her dad and I are thicker people and I just don't understand how you can see her ribs when all she does is eat... he had no answer for me... finally my dad got sick (he thought he got a cold from jaelyn) but anyway his simple cold ended up killing him... he developed pulmonary fibrosis which is the adult onset of cf meaning you develop it as you get older...scar tissue in his lungs and what not... within 6 months of him getting sick he passed away on sept 11 2004... at that point I knew cf was genetic so then I really pushed her docs to send her to a specialist.. this was in oct of 2004... they got her an appt at a childrens hospital here in Jacksonville about 3 months later... jan 15 2005 (2 weeks after her 3rd bday ) she was diagnosed with cf..
it took about an hour for them to do her sweat test..and it came back positive so they did it again just to make sure and again it was positive... and ever since then she has been on the cystic fibrosis meds and will be for the rest of her life... she is great now... this year she has gained about 10-12 lbs.. she is sooo tall she looks like she is 5-6 but really just had her 4th birthday.. so in the ways of her growth she is leaps and bounds above what I have seen in some children her age... she hasn't had any infections but within the past 6 months she has been diagnosed with PA ... and has been PA positive ever since... they put her on toby to see if that would help but so far she still is PA +... I am just hoping that the PA doesn't in any way advance her cf symptoms... she takes her creon, pulmozyme, toby, a nasal spray and her vitamax twice daily... she has a chest pt vest (which she hates) but its all very time consuming for me.. im a single mom working two jobs and it's a serious strain... but for her I do It gladly... anything to make her more healthy and live a longer life!
I just read a report that surfers that have CF are outliving their non surfing counterparts due to the extra exposure to salt water... so I guess it's a good thing we live 5 mins from jax beach and during the summer time we are there every weekend.
ETA: i blogged this over a year ago.. just thought i would share!
but at 6 months I quit breastfeeding and went back to work... so within a months time she lost all the healthy enzymes in my breast milk and was around sick snotty nose kids at the daycare... to say the least it shocked her system and she came down with fevers all the time... had pneumonia ...ear infections... the child threw up so much mucus it was unbelievable her little body could hold that much... I knew it was weird bc she would eat and not vomit any food.. just mucus.. it looked like greenish yellow jello... it was a semi solid... so that was my first clue.. but the docs said she had asthma and allergies and she took a slew of asthma/allergy meds.. but it never worked...
she got tubes put in her ears and her adnoids removed 2 weeks before her 1st bday and that seemed to make a huge difference.. for about 6-8 months she was like a new child... then it all came right back ... the coughing and congestion.. vomiting ridiculous amounts of mucus ... and they never did anything.. I worked at the time for America online.. so I was on the internet all day.. I typed in her symptoms as chronic and they pulled up pages and pages of cf... so in essence I diagnosed her myself before the docs ever figured it out... all along they said asthma and allergies...
so for about 3 yrs we were in and out of docs offices and emergency rooms every 2-3 weeks... and one time I said to my doc.. you know my kid eats like a horse and she is so skinny... her dad and I are thicker people and I just don't understand how you can see her ribs when all she does is eat... he had no answer for me... finally my dad got sick (he thought he got a cold from jaelyn) but anyway his simple cold ended up killing him... he developed pulmonary fibrosis which is the adult onset of cf meaning you develop it as you get older...scar tissue in his lungs and what not... within 6 months of him getting sick he passed away on sept 11 2004... at that point I knew cf was genetic so then I really pushed her docs to send her to a specialist.. this was in oct of 2004... they got her an appt at a childrens hospital here in Jacksonville about 3 months later... jan 15 2005 (2 weeks after her 3rd bday ) she was diagnosed with cf..
it took about an hour for them to do her sweat test..and it came back positive so they did it again just to make sure and again it was positive... and ever since then she has been on the cystic fibrosis meds and will be for the rest of her life... she is great now... this year she has gained about 10-12 lbs.. she is sooo tall she looks like she is 5-6 but really just had her 4th birthday.. so in the ways of her growth she is leaps and bounds above what I have seen in some children her age... she hasn't had any infections but within the past 6 months she has been diagnosed with PA ... and has been PA positive ever since... they put her on toby to see if that would help but so far she still is PA +... I am just hoping that the PA doesn't in any way advance her cf symptoms... she takes her creon, pulmozyme, toby, a nasal spray and her vitamax twice daily... she has a chest pt vest (which she hates) but its all very time consuming for me.. im a single mom working two jobs and it's a serious strain... but for her I do It gladly... anything to make her more healthy and live a longer life!
I just read a report that surfers that have CF are outliving their non surfing counterparts due to the extra exposure to salt water... so I guess it's a good thing we live 5 mins from jax beach and during the summer time we are there every weekend.
ETA: i blogged this over a year ago.. just thought i would share!