Just found out daughter has Mycobacterium Abscessus

[mep65]

We just found out my daughter 11 has mycobacterium Abscesses (not MAC which she has also cultured in past but now apparently clear) and will start the treatment process soon.
right now they r recommending IV Amikacin, IV imipenem, and azithromycin for at least 5 weeks (up to 3months) until cultures clear. Her pfts are still in the 80s/ low 90s, but it's still a drop from her baseline of over 100 last year. Do you have any advice as we start this journey? We are thinking of doing a port instead of PICC due to the potential length of time. I am starting my research on treatments and these medicines.... Seems like they want to attack this pretty hard upfront, which seems like the right approach. We will do baseline testing in next few days for ct scan, ekg, hearing, blood and do weekly monitoring, especially of hearing due to amikacin.
Our cf team will coordinate with dr Oliver at nih.
thanks...(PRAYING)

 

[TreasureGoddess]

I'm somehow not technical to be able to do a search for you and post a link, but there is a LOT of GREAT information here on the forums. I'd go into the teens/young adult sections as well as the family and adult and search for mycobacterium abscesses and see if you can find the trails. My son has cultured that as well. We are still in the waiting to determine when to start treatment phase. There is info on the effects to watch for, medicine combos that have been successful as well as things to know. HUGS and it sounds like your CF team has a good plan. Best of luck to you!

 

[beautifulsoul]

Sounds like his team is on top of things. The hearing loss with Amikacin is what I would be worried about. I was on this around the same age and eventually lost ALL of my hearing from long term use of Amikacin. I have Cochlear Implants now. That's just my two cents. Best of Luck. Much love,

 

[mep65]

TreasureGoddess, thanks for the response! I have done some searching and I have found a lot of great information so far -- although overwhelming at this point too. Thanks for the advise on going to the teens/young adult section. I was just doing overall searches. I was not expecting this, as she seems relatively healthy with little coughing. Best of luck to you and your son as well...

 

[stephen]

mep65,

It's my belief that most people tolerate Amikacin, and other Aminoglycosides including Tobramycin, so you daughter will probably not have any problems.

If she does start Amikacin, she should be on the lookout for:

Ringing or squealing sounds in her ears.
Changes in the sounds of splashing water, clanging glasses, jiggling chains, etc.
​

Stop the infusion and notify her doctor immediately. Another antibiotic may be available.

Like beautifulsoul, I did experience hearing problems, although no where near as serious as she did.

After using TOBI for years, noticeable effects started during the second time I was on IV Tobramycin. Slight squealing sounds were noticeable in my ears. The next time I was on it, there was a sudden change in how the water sounded while taking a shower. This indicated a loss of high frequency hearing. I immediately stopped the IV infusions and notified my doctor. She substituted another antibiotic which although maybe not quite as effective, did do the job. I haven't used Tobramycin or TOBI since. Fortunately, after a year plus the squealing did stop. Some of the high frequency loss has returned and I've gotten use to the loss that hasn't.

Again, must people do not have problems - but do be on the look out.

 

[mep65]

Stephen,
Thanks so much for the info. Sounds like we are definitely starting with IV Amikacin... so I will make sure to ask her about the sounds that you mention. She will be getting weekly hearing tests, but I agree its best to be proactive and those are great clues that something is not quite right. Its great to hear that you were able to recover some of your frequency loss. And its great to read that you are doing well since being on Kaydeco!! My daughter has a nonsense mutation, so looks like we will need to wait a little.
Thanks again!

 

[windex125]

I as well have loss o hearing due to TOBI but with me I did not even know I was losing my hearing till I started answering yr question with a answer that made no sense. I use hearing aids now for the most part. I had no idea this was #1 side effect for this med and I used it for over a year. So definitely watch out for this and why not have hearing tests done once a month.

 

[mep65]

Amber, thanks for the info and for sharing your information, it is so helpful...especially as you were around the same age as my daughter is starting this medicine. I am concerned about the hearing loss... but reading your story is so inspirational and its great to read that the cochlear implants have worked for you! Thank you!

 

[Robkc]

NTM Video Series - Must Watch

mep65, you should watch this video series on NTMs. Dr. Charles Daley of National Jewish Hospital, Denver was MC. His opening statements are from the Carolyn and Matthew Bucksbaum NTM Lecture Series for physicians, patients and families which was held in Denver, CO on May 15, 2015. Link: https://www.youtube.com/watch?v=G0JI5yXx66c&feature=youtu.be Dr. Ken Oliver was one of the presenters. I don't know what area of the country you're in but I've been seeing
Dr. David Griffith at Univ. of Texas Health Science Center, Tyler who chaired the panel setting the treatment guidelines of the American Thoracic Society for treatment of NTMs which is the standard of care that all Docs are to follow.

Comment: I would really question using IV Amikacin with its serious potential side effects. There is nebulized Amikacin and a liposomal form with reduced side effects. Dr. Oliver will be very knowledgeable about the best treatment protocol for that NTM. May the Lord help and heal your loved one.

 

[MichaelL]

I'm sorry to hear about your daughter's diagnosis. I caught m. abscessus in 2008 and have been dealing with it since.

The IV Amikacin is much more effective than the inhaled version. However, I would encourage monthly hearing tests while your daughter is on it. I have had hearing damage, although it's in the upper registers so doesn't affect me much. My damage didn't come until I had been on the drug for a year, but each person is different.

There are several of us on this forum with m. abscessus and we have had several discussions about it as noted above. I think this discussion is one of the best: http://forum.cysticfibrosis.com/threads/108550-Non-Tuberculosis-mycobacteria

Personally, I've resisted getting a port and have used PICC lines exclusively. My PICCs usually last about four months, which should be long enough for your daughter's treatments. My concern with ports are that they seem like a great solution for people who go on IVs for a few weeks and then go off for several months. However, another person on here got a port last year and he quite likes it.

Good luck with the treatments.