new member w/13 yo wg daughter

[curly]

Sorry to hear that. I hope it goes well. It is my understanding this is fairly common in youngsters w/wg. My daughter goes back to her ENT tomorrow and he will determine if she needs another dilation. She just started having difficulty breathing upon exertion but hasn't had any stridor or nasal flaring yet. It is best if they can see the ENT when they first notice the symptoms worsening as airway issues are of utmost concern in a wg pt. If airway patency is lost, intubation would be unobtainable and a trach would be the best bet. That has not happened w/my daughter. She has had 3 dilations in 3 months. The second one was treated topically w mytoxin-C which helped reduce the granulations. However one would not want to use mytotoxin-C in a frivalous manner as while it's great for breaking down the granulomas it leaves fibers of its own if overused. So as I said earlier, this may be a thing you just do when it's necessary and hopefully the periods between the procedures will lengthen over time. My prayers are with you and Justin, your family, and the doctors and nurses who take care of him. Our children are very strong and they are fighters. And so are we.

[curly]

Sorry to hear that. I hope it goes well. It is my understanding this is fairly common in youngsters w/wg. My daughter goes back to her ENT tomorrow and he will determine if she needs another dilation. She just started having difficulty breathing upon exertion but hasn't had any stridor or nasal flaring yet. It is best if they can see the ENT when they first notice the symptoms worsening as airway issues are of utmost concern in a wg pt. If airway patency is lost, intubation would be unobtainable and a trach would be the best bet. That has not happened w/my daughter. She has had 3 dilations in 3 months. The second one was treated topically w mytoxin-C which helped reduce the granulations. However one would not want to use mytotoxin-C in a frivalous manner as while it's great for breaking down the granulomas, if overused, it leaves fibers of its own. So as I said earlier, this may be a thing you just do when it's necessary and hopefully the periods between the procedures will lengthen over time. My prayers are with you and Justin, your family, and the doctors and nurses who take care of him. Our children are very strong and they are fighters. And so are we.

[curly]

Oh my, it must be past my bed time. Excuse me for repeating myself!

[JanW]

Theresa: It is good that your son's doctor is going to consult with Dr. Lebovics, who is my surgeon. I had balloon dilation as well as surgery to make radial incisions in my subglottis on March 4, and so far have not had to have a repeat of the surgery -- this will likely be scheduled for late fall/early winter. I have had no problems breathing -- my opening was a 2.5 and is now a 6.5 -- slightly less than fully open. As I understand it, the trick is to not intervene until it is necessary for the patient's comfort and wellbeing -- in other words, he will let me get lower than a 6.5 because it isn't affecting me yet. He says that I will immediately notice when it starts worsening and says that his patients come to him asking for the surgery even before he notices what's going on with the scope (because the difference in how you breath is so stark). People who have never had this condition cannot imagine how much it affects every aspect of your life. It seems that I am seeing more people on this board who are just having the dilations and the myomicin -- and I don't think that holds very long.

As for the myomicin -- Dr. Lebovics said that some docs use 14X larger a dose than he would ever use -- of course you can't control what your doctor does, but you can be aware that some docs think that more is better and it isn't necessarily (they think the same thing about pred, by the way).