Thursday, May 19

Culture results and X-ray from CF Clinic

We got the results from Madeline's CF Clinic the following week after her clinic. We were thankful to see the Psuedo still hasn't beefing show up on her cultures ( as it has done in the past- see past posts). It's been almost 2 years since she has last cultured pseudo. We are so thankful for that since it is a bacteria that once in the lungs can cause permanent and irreversible lung damage if not controlled. Madeline cultured pseudo at age 2 and used 3 different inhaled drugs over the course of 6 months time to try and rid her body from it. It never worked so we admitted her to Hopkins ( as recommended by her team of doctors) to use IV antibotics to try and kill off the pseudo. Usually IV antibotics is the most aggressive way to treat bacteria, like pseudo that may harm the lungs. After a two week course of antibotics in the hospital, Madeline had one clean culture of no pseudo but only a few months later has pseudo show up again on her culture. We battled pseudo for over a year again with more inhaled antibotics at home to kill off and weaken the bacteria. Thankfully, it seemed to help ward of pseudo. We have been clear.

So what is this new bacteria showing up on her most recent results? We asked this of her CF Clinic team at Hopkins. Streppuccucus pneumoniae is a bacteria that is usually left untreated in cf patients unless they have symptoms - like coughing, lower lung functions,
Etc. Due to Madeline'a chronic night cough the team felt it was nessecary to treat the bacteria with oral antibiotics in thinking that the bacteria could be partly the cause of her cough. 

Her lung function though and X-ray show that this bacteria and chronic night cough has had no affect on impacting her lunch health. We are thankful for these test results. As her X-ray came back as being read as follows:

After learning that her lung health does seems to be impacted by her chronic night cough, we were relieved. Seeing the results of her X-ray, no lung function change, and throat culture gave us a good indication. But, we just like her doctors are still wondering why this night cough has been happening since October and what can he down to stop it. She often chokes on her mucous when she is laying down this waking her up. We needed more answers so we consulted with a pediatric allergist as a start.

We got an appointment to have Madeline go through a full panel of allergy testing to see if maybe some of this chronic night cough has been occurring because of her increasing allergies. She has never had allergy testing done but we know she suffered from
Allergies as she is on 2 medications to treat allergies that have helped relieved he symptoms of sneezing, running nose, and watery/ itchy eyes while she is outside. 

Signing up for allergy testing meant that she had to be off of all of her allergy medicines for 5 days leading up to her appt. we knew this would be challenging.  
In those 5 days, she broke out in hives, had more coughing, sneezing, throat clearing. It was important though that we stick to no allergy medicine so the allergist, Dr Kim could accurately test her skin for all the allergens without the help of any antihistamines in her body.

Rash on her arm

BUT, she made it to allergy appointment day. Dr. KIm ran all the skin tests to see if and what she may be allergies to.

And boy did we learn! Her tests came back as highly allergic to cats, most tree pollens, some weed pollen, and many types of mold. We were given 3 new allergy meds to add to our ever growing list of CF medications to try. It's our hope and understanding from Dr. KIm that her cough could be from a variety of reasons but, as of now she is being treated with these 3 new medicines in hopes that if it is caused my allergies or her sinuses that these medicines will target those issues and hopefully solve or alleviate her chronic night coughing. 

We return in 4 weeks to see Dr Kim to follow up with how theses medications may be working for her and if they aren't what the best next step would be to solving this chronic night cough problem.

Thanks for following Madeline's CF journey! We appreciate your support.



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