# Anybody ever experience MAC with a child/infant?



## whatslovegottodowithit? (Jan 6, 2013)

First, my thread: http://talkaboutmarriage.com/coping-infidelity/64742-should-i-concerned.html which speaks to why I'm here on TAM (it's not long at all and I'm NOT requesting responses...do so if you please, but shown rather to show who I am and why I'm here on TAM).

My 15 month-old was recently diagnosed with Mycobacterium avium complex (MAC) Mycobacterium avium-intracellulare infection - Wikipedia, the free encyclopedia . He has remained his normal, playful self throughout. He does not have any other medical issues/concerns. It presents as obvious swollen lymph nodes on and just below the jaw line. One node in particular is causing the skin under the node to be both swollen and red in color. 

Many tests and a couple of hospital admissions led to a diagnosis. Consultation(s) with Pediatrician, ENT, and a Pediatric Infectious Disease Physician with follow-ups to all will take place in the near future until he is cured. Surgical intervention to remove the node(s) revealed further spread causing a 15 month-old to undergo general anesthesia to remove 1 swollen node for biopsy (guess helped with diagnosis) and now has paralysis/deficit to lower lip (think Sly Stallone) with uncertainty if will self-resolve or not, not to mention a 2" likely surgical scar to neck.

The treatment plan is antibiotics: Rifampin and Azithromycin. It will be at least 6 months of both daily and can be up to 24 months. He has been on them now for 4 days so unknown if will cause chronic loose stools (diarrhea). He will require periodic blood draws to check liver function with these meds. 

The specialists tell me this is uncommon, but not rare. I'm wondering if anybody here has experienced this illness with a child and how they managed it? How long was treatment? Pretty much any insight from someone who went through this will be helpful.

Thank you for your time and if further details are requested, I'll be happy to provide


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## TheMarriageandFamilyClini (Mar 3, 2012)

First, let me say that I am not a parent of a MAC child. I am a counselor who has counseled many families with children with illnesses:chronic, acute, etc. 

First of all let me just say you're being a great parent just by coming on TAM and asking questions. It shows a real investment in your child and in yourself as a parent. 

When I work with ANY parent with a child with an illness my advice is always to let them be a kid as much as possible. Where your child is so young, it's likely that other kids he plays with won't mind if he has scars or behaves differently, etc. Not until he reaches mid-grade-school will they really start to notice and care. Until then, let him live as normally as possible. Once he starts getting judgmental looks and comments from other kids at school, then it will be necessary to do a little more but that's a ways a way. In the mean time, enjoy him and enjoy watching him grow. 

As for you, make sure to take care of yourself as much as possible. Even though his playmates might not notice scars, etc. your grown-up friends do and you may get some judgmental looks and awkward stares. Don't take these personally. A lot of parents just simply don't know what to ask. They're afraid if they ask they'll hurt your feelings or afraid that NOT asking will hurt your feelings. Be comfortable and confident around other adults, they will feel your vibe and reciprocate it making everyone much more comfortable. If you get some parents that can't make it past your child's illness (unfortunately, there are some out there). Don't sweat it. Just let it go. This will be a strong example to your child, too as he/she grows. 

Most importantly, make sure you and your spouse are there for each other. Due to the seeming rarity of this disease, you may not find other parents who have children with this disease so support groups may be hard to find. But your spouse knows. Talk with each other and be open about your fears, trepidation, frustrations, etc. 

Hope this helps.

Aaron


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## whatslovegottodowithit? (Jan 6, 2013)

" Hope this helps" 

Yes, the insight of how others interact/respond is not something I considered yet as the weeks of testing and now treatment is still 'new' at present. I needed to hear that I should let go other adults who I may encounter who may say some really dumb things to set an example for my children.

My M was/is fragile which is why I found TAM, but my W and I have been able to work well together through this (we were improving before, but most of my effort/focus is on my baby these days).
_Posted via Mobile Device_


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