Munkeesmama
New member
Small update:
It was time for a "well baby visit" for all 3 of my kids. My son has had a chronic cough off and one since he was little. Albuterol helps, but isn't a cure all. They have said it could be asthma. Well, he's 5 now and has not gained ANY weight since he was 3 1/2. So he's gone between 38-40 lbs. lost and gained the same two pounds for 1 1/2 years. Our new ped recommended having him tested for thyroid and for cf. She went ahead and tested both my daugthers as well including the one i popsted about below. She saaid it;s the normal test which tests for the most common mutations. I'm not completely happy with this, but it's a great start. My daughter's g.i. doctor will probably be not too happy since she wasn't too keen on testing. So, a small update, but it's a start. The ped. felt the blood test testing for the common mutations was a better start than sweat testing.
I'm new here. A little back story. My youngest daughter was born 3 months early had an almost 10 week nicu stay. since then she's had nuemorous hospitalizations for severe reflux (which we believe is now resolved), a feeding tube for fft (from the reflux?), sleep studies, endoscopies, etc. She's now 2 years old. She gets colds very easily and hasn't gained weight since last august. In fact she's lost 6 ounces. She has been tube weaned since last july, but eats a ton. A typical breakfast for her would be 2 eggs, 2 pieces of bacon, hasbrown, and milk. Lunch would be peanut butter and jelly sandwich, a peach, and a handful of cheezits, and some water/pediasure. Dinner would be about the same. This doesn't include the snacking or the fact that she begs everyone else at the dinner table for their food as well. she eats, ALOT. Which leads me to believe it's not an issue of calories.
Recently (the past 4 weeks) she has this cold that doesn't go awya. it's not bad, but does cause alot of coughing aqnd sounds "productive" so to speak. Also, she's had diarrhea for about the same amount of time (the cold symptoms have come and gone really for the past 2 years) the diarrhea is the past 4 weeks. For the first 3 weeks it was 6-10 a day. VERY foul smelling (always has been) very very loose. (at one point it sorta "floated" in her diaper. Other times it looks almost stringy. It goes between a very bright green color (regardless of what she ate) and a nasty orange/rust color.
She is being seen by her gastrointerologist who has run many tests. So far the negative tests have been c.diff, celiac, electrolytes (yay for lots of fluid she's getting), a few other things I can't remember. she was positive for anemia and will be put on meds for it (dr. says poly vi-sol isn't enough). we've also tried probiotics which don't really seem to make a difference either way.
They ran a fecal fat test which has yet to come back. I mentioned wanting her tested for cf but the doctor seemed hesitant and pulled out a book. My daughter has grown 3 inches since last year which is GREAT, but the weight gain is not. She said that cf kids don't gain weight or height, and that cf kids are scrawny and short. I trust this doctor, but i have a hard time believing that ALL cf kids don't gain in height. Am I being paranoid? She said if the celiac was negative anf the fecal fat positive she'd pursue a sweat test. After reading this i'd like to get the fullambry panel and have emailed her about it but no response yet.
I guess i'm wondering should i get my daughter tested?
Do cf kids really not gain height if they're not gaining weight, or could she still have it and gain height but not weight?
How did your kids symptoms start? What age? and if it was diagestive problems did they start suddenly?
Thanks in advance!
It was time for a "well baby visit" for all 3 of my kids. My son has had a chronic cough off and one since he was little. Albuterol helps, but isn't a cure all. They have said it could be asthma. Well, he's 5 now and has not gained ANY weight since he was 3 1/2. So he's gone between 38-40 lbs. lost and gained the same two pounds for 1 1/2 years. Our new ped recommended having him tested for thyroid and for cf. She went ahead and tested both my daugthers as well including the one i popsted about below. She saaid it;s the normal test which tests for the most common mutations. I'm not completely happy with this, but it's a great start. My daughter's g.i. doctor will probably be not too happy since she wasn't too keen on testing. So, a small update, but it's a start. The ped. felt the blood test testing for the common mutations was a better start than sweat testing.
I'm new here. A little back story. My youngest daughter was born 3 months early had an almost 10 week nicu stay. since then she's had nuemorous hospitalizations for severe reflux (which we believe is now resolved), a feeding tube for fft (from the reflux?), sleep studies, endoscopies, etc. She's now 2 years old. She gets colds very easily and hasn't gained weight since last august. In fact she's lost 6 ounces. She has been tube weaned since last july, but eats a ton. A typical breakfast for her would be 2 eggs, 2 pieces of bacon, hasbrown, and milk. Lunch would be peanut butter and jelly sandwich, a peach, and a handful of cheezits, and some water/pediasure. Dinner would be about the same. This doesn't include the snacking or the fact that she begs everyone else at the dinner table for their food as well. she eats, ALOT. Which leads me to believe it's not an issue of calories.
Recently (the past 4 weeks) she has this cold that doesn't go awya. it's not bad, but does cause alot of coughing aqnd sounds "productive" so to speak. Also, she's had diarrhea for about the same amount of time (the cold symptoms have come and gone really for the past 2 years) the diarrhea is the past 4 weeks. For the first 3 weeks it was 6-10 a day. VERY foul smelling (always has been) very very loose. (at one point it sorta "floated" in her diaper. Other times it looks almost stringy. It goes between a very bright green color (regardless of what she ate) and a nasty orange/rust color.
She is being seen by her gastrointerologist who has run many tests. So far the negative tests have been c.diff, celiac, electrolytes (yay for lots of fluid she's getting), a few other things I can't remember. she was positive for anemia and will be put on meds for it (dr. says poly vi-sol isn't enough). we've also tried probiotics which don't really seem to make a difference either way.
They ran a fecal fat test which has yet to come back. I mentioned wanting her tested for cf but the doctor seemed hesitant and pulled out a book. My daughter has grown 3 inches since last year which is GREAT, but the weight gain is not. She said that cf kids don't gain weight or height, and that cf kids are scrawny and short. I trust this doctor, but i have a hard time believing that ALL cf kids don't gain in height. Am I being paranoid? She said if the celiac was negative anf the fecal fat positive she'd pursue a sweat test. After reading this i'd like to get the fullambry panel and have emailed her about it but no response yet.
I guess i'm wondering should i get my daughter tested?
Do cf kids really not gain height if they're not gaining weight, or could she still have it and gain height but not weight?
How did your kids symptoms start? What age? and if it was diagestive problems did they start suddenly?
Thanks in advance!