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Thread: Sudden unexplained increase in secretions, reduced general wellbeing and mood in 7 yo

  1. #1

    Question Sudden unexplained increase in secretions, reduced general wellbeing and mood in 7 yo

    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
    Last edited by Helenlight; 07-23-2019 at 01:48 PM. Reason: additional information
    Mother of daughters. One with DDF508, and one w/o CF.

  2. #2
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    I'm assuming when they cultured everything, they found out what the "bugs" were sensitive to... When DS was a baby he cultured H. Flu and was usually extra snotty and he'd get put on Augmentin for 10-14 days, only to have it come back. His doctor finally wanted to try to get rid of it once and for all so it didn't get into his lung (was mostly sinuses), so he prescribed a stronger dose of antibiotics for a longer period of time -- 3-4 weeks, as well as increasing CPT from 3 times a day to every 4 hours. Fortunately it worked. I realize she's allergic to Augmentin, but maybe check with your clinic to see about a more aggressive plan with whatever abx and what they suggest with hemoptysis (since we haven't dealt with that yet). Or maybe someone else here has some suggestions.

    With DDF508, the pancreas just takes longer to process things, so with DS he does fine with his fasting glucose test, but his 2 hour glucose tolerance test it gets a bit high. So far we've just monitored blood sugars and he sees an endocrinologist once a year. One thing to consider if
    on prednisone it can greatly increase blood sugars.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  3. #3
    Hi Ratatosk, thanks for your reply. Yes I think the H.flu is causing her more trouble than we originally thought. She has been put on cefapime and tobi to try and clear it. At my request her iron levels have been checked and they are low. I would have thought that would be treated right away since she is so pale and low energy, but the doctor doesn't seem all that bothered. I'm bothered, so I did some research on iron levels and CF and it seems low iron can be significant. I've sent some studies to our CF nurse and we'll see what they come back with.
    Mother of daughters. One with DDF508, and one w/o CF.

  4. #4
    [QUOTE=Ratatosk;1087706]

    I also wanted to ask you how your LO was doing on the Vertex drugs? We may be able to access those when we move to the USA in a few months.
    Mother of daughters. One with DDF508, and one w/o CF.

  5. #5
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    DS started Orkambi 4 years ago and grew significantly. We'd struggled with weight since he was an infant, barely meeting 50th percentile for weight despite the high fat high calorie foods he ate. If not for cf, the doctors would be after him to lose weight. Breathes much quieter while sleeping. After years of culturing steno maltophilia, pseudomonas and other cf bugs he mostly has normal flora. We still do chest physio (vest) and nebulize albuterol, hypertonic saline and pulmozyme to keep his lungs healthy.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  6. #6
    That's amazing! Really heartening
    Mother of daughters. One with DDF508, and one w/o CF.

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