- Tuesday, June 10 - High Resolution CT Chest Scan
Doctor was looking for enlarged lymph nodes and nodules. The scans showed both were present, but didn't give us definitive results that the NTM infection is active.
- Thursday, June 19 - Bronchoscopy
Leah's CF doctor, Dr. Akhter, performed the procedure. This allowed doctor to take a deeper sputum sample to culture. Doctor also suctioned out as much mucus as he could while he was down there.
- Monday, June 30 - Culture Results from Bronchoscopy
We knew the longer we had to wait for results, the more likely they would be good. However, within two weeks, we got a call from the doctor's office. Leah's culture from the bronchoscopy showed a rare amount of Mycobacterium abscessus.
- Thursday, July 3 - Consultation with Dr. Akhter and Dr. Collins
That Thursday, we went in for a consultation with Dr. Akhter and Dr. Collins (an infectious disease doctor that Dr. Akhter has been consulting with) to talk about this infection and discuss treatment options.
Lots of questions... not very many answers
During the weekend, we spent time talking and praying and asking more questions and praying and asking others to pray. We put a call in to doctor on Monday with a list of questions. Since this is a rare infection, there's just not answers to many of our questions. We specifically wanted to ask if we could consult with other CF doctors who have treated patients with the m. abscessus infection.
Leah is Dr. Akhter's first patient to have multiple positive NTM cultures. He has had two bronchiectasis patients who have had one positive NTM culture, but their repeat culture came back clear. Leah is also Dr. Collins first patient with this infection, although a doctor she works with has seen one or two patients with it. Dr. Akhter also consulted with Dr. McColley (the director of the CF Center at Lurie Children's Hospital in Chicago) and she has not had any patients with this before.
Dr. Akhter contacted Bruce Marshall (the head of the medical branch of the CFF). He said most centers have probably only seen one or two CF patients at the most with this infection. He suggested contacting Dr. Scott Sagel (the director of the CF Center at Children's Hospital Colorado - which appears to be the leading experts in NTM and is the pediatric equivalent to National Jewish for adults). Dr. Sagel responded to Dr. Akhter and put doctor in contact with Dr. Stacey Martiniano, who is also at Children's Hospital Colorado and known as the local CF NTM expert.
They both recommended NOT starting treatment on Leah right now, but to watch her closely. Since she is so healthy right now, not showing any symptoms of having an active NTM infection, and the treatment requires being on 2-3 antibiotics for years, it is their professional opinion to watch Leah closely to see if the disease is active. They said the slow clinical progression of the disease would not put Leah to harm.
To watch Leah closely, we will be looking for any clinical changes (decline in pulmonary function, changes in chest x-ray or CT scans) or symptoms that might indicate disease (increased cough, fever/night sweats, weight loss). We will have appointments every 6 weeks. We will do a PFT (Pulmonary Function Test) at each appointment, a chest x-ray every 3 mos (when CT Scan is not done), and a CT Scan done every 6 to 12 months.
If she starts showing any of these changes or symptoms, we will first try to treat any of the typical CF pathogens Leah may have (she has cultured both staphylococcus aureus and haemophilus influenzae for years) before starting NTM treatment. Doctor said that he will be able to consult with both Dr. Sagel and Dr. Martiniano on Leah's case.
For those interested in learning more about the m. abscessus infection, we would be happy to pass along some of the medical articles we have been researching. Let us know and we can send it to you via email. Here is a link to information on NTM infections from the CFF: http://www.cff.org/Adults/Germs/NTM/
How are we doing?
We are thankful that it has not slowed her down at all. She is fully taking advantage of her summer, playing with her sisters and friends, running around, swimming in our pool, reading new books, even going on all the water slides at the water park! Please keep our little girl in your prayers!