Helenlight
New member
I thought I would put our current situation to the forums, because I'm not getting clear answers from the doctors, and I'm worried.
Our 7 year old (DDF508) has recently (for the last 3 months) been producing copious amounts of thick green/grey secretions. She has always been fairly productive, but never this much gunk. Her appetite has reduced significantly, and she has been feeling down on herself. She has started experiencing headaches and stomach aches. She typically cultures Staph A, and/or Haemophillus influenzae, which is treated initially with oral Cefalexin, Azithromycin, or, more recently, doxycycline. These seem to have little effect. She had 2 weeks of IV Cefeuroxime which helped a bit, but 5 days later the copious thick secretions came back, and appetite declined again.
Recently she had a bronchoscopy, and the specialist seemed surprised at the amount and type of secretions he saw, considering her age. He is suggesting starting IVs every 3 months. But he couldn't really explain it. He said that if she was culturing pseudomonas it might make sense, but she isn't. He said sometimes this kind of thing can happen as a result of blood sugar control problems/CFRD, but that was unlikely at this age. After the bronchoscopy she spiked a fever and got put on cefeuroxime. She improved and we were sent home with a high dose of oral Cefeclor, which she is still on. She was better for the next couple of days, even quite clear after the wash out, and her appetite went back to normal. But two days later the really thick secretions came back, and her appetite dropped again.
She did culture a couple of cold viruses, but she's had colds before but her secretions were never this tenacious, nor her mood so flat/low/negative.
Her usual treatments are: salbutamol inhaler, flixotide inhaler, hypertonic saline with PEP twice per day, nebilised NAC once per day, VitaBDECK capsule, zinc capsule, calogen fatty supplement 40-60mls per day.
She develops allergic rashes to Augmentin, Flucloxicillin, Cotrimoxazole, pulmozyme.
She started PEP just before she started getting worse (and before she had her first bout of hemoptysis) , and stopped chest 'patting' (which we have started again recently. I did wonder if that had anything to do with it. I can't help but wonder if the counter-pressure of PEP can actually push the secretions the wrong way? We are also in Winter (Southern Hemisphere), she has usually been good during Summer.
Has anyone else experienced this, particularly a child? Has anyone developed CFRD at this age? Has anyone else worsened after starting PEP? Any other thoughts/ideas?
Thanks
Our 7 year old (DDF508) has recently (for the last 3 months) been producing copious amounts of thick green/grey secretions. She has always been fairly productive, but never this much gunk. Her appetite has reduced significantly, and she has been feeling down on herself. She has started experiencing headaches and stomach aches. She typically cultures Staph A, and/or Haemophillus influenzae, which is treated initially with oral Cefalexin, Azithromycin, or, more recently, doxycycline. These seem to have little effect. She had 2 weeks of IV Cefeuroxime which helped a bit, but 5 days later the copious thick secretions came back, and appetite declined again.
Recently she had a bronchoscopy, and the specialist seemed surprised at the amount and type of secretions he saw, considering her age. He is suggesting starting IVs every 3 months. But he couldn't really explain it. He said that if she was culturing pseudomonas it might make sense, but she isn't. He said sometimes this kind of thing can happen as a result of blood sugar control problems/CFRD, but that was unlikely at this age. After the bronchoscopy she spiked a fever and got put on cefeuroxime. She improved and we were sent home with a high dose of oral Cefeclor, which she is still on. She was better for the next couple of days, even quite clear after the wash out, and her appetite went back to normal. But two days later the really thick secretions came back, and her appetite dropped again.
She did culture a couple of cold viruses, but she's had colds before but her secretions were never this tenacious, nor her mood so flat/low/negative.
Her usual treatments are: salbutamol inhaler, flixotide inhaler, hypertonic saline with PEP twice per day, nebilised NAC once per day, VitaBDECK capsule, zinc capsule, calogen fatty supplement 40-60mls per day.
She develops allergic rashes to Augmentin, Flucloxicillin, Cotrimoxazole, pulmozyme.
She started PEP just before she started getting worse (and before she had her first bout of hemoptysis) , and stopped chest 'patting' (which we have started again recently. I did wonder if that had anything to do with it. I can't help but wonder if the counter-pressure of PEP can actually push the secretions the wrong way? We are also in Winter (Southern Hemisphere), she has usually been good during Summer.
Has anyone else experienced this, particularly a child? Has anyone developed CFRD at this age? Has anyone else worsened after starting PEP? Any other thoughts/ideas?
Thanks
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