I know blisters in the throat can be scary. Luckily Ive never stopped breathing due to choking. When I was younger (I'm 15 now) I would "choke" a couple times at every meal. It was normal for me... painful and tiring, but normal. I would always have a bowl or cup near by in case food got cought in my throat. My eyes would feel like they were bugging out sometimes and I would look very scared, but I quickly learned I'd have to get used to it. I calmed down quite a bit and eventually it just became irritating, not scary. The scary part is when after I "choke" and finally get the food down it often leaves blisters. Its hard to explain, but I always know by swallowing if I have a blister in my throat. And often times when I do swallow it makes the blisters bigger. So Ive had many times where I can't even swallow my own saliva. Coughing hard helps break the blisters and if I feel up to it I'll try to eat. Sometimes I know I need to give my throat overnight to heal a bit before trying to eat again. Alot of times days! But other times the blister is not too bad and I'll eat soft things. Sometimes drinking makes it worse because the fluid (whatever I'm drinking) will fill up the blister again. And that is painful. Ive tried hot things, cold things. I suppose it depends on how bad the sore in my throat is. Hot chocalate may be good because its hot and also made with milk and coats the throat. Something thick like milk sometimes helps coat my throat a bit so I can atleast get a little bit down. Some times its so bad I lose weight from not eating for days. You can't really force someone to eat if they have sores or blisters in their throat because it could make it worse. My throat has two strictures that have never gone away... and my throat is smaller than it used to be. Thats probably from all the "choking" incidents I've had. I know there is a throat surgery that can help re-open the throat a bit... but Ive been doing fine lately so we havn't had to worry about it.
I used to have a G-tube.. which some of you may need to consider if the throat gets so bad they cant eat hardly ever. Unfortunantely, for me the G-tube was awful and had many complications!!!! So my mom let the doctors remove it. Im 15 now and very happy :) I hardly ever choke.. maybe once every week. Unfortunately I still get blisters on those rare occasions that I do choke so I have to be careful. As a matter of fact I have a blister in my throat right now. But Ive been able to eat ok. Ive just been extremely careful. I drink slim-Fasts.. I used to drink Ensures but they give me stomach aches sometimes so I switched to Slim Fast... but instead of replacing a meal with it, I drink one right after my meal.
I seem to be gaining a tiny bit of weight but its very hard since I'm Anemic.
I know every EB case is different so I won't necessarily have the same problems or symptoms. But its harder with kids so young. They can't always tell you how bad their throat is or what they want to try to eat. Its taken me 15 years to figure out what I have about what helps my throat.... I hope I helped.
Lots of Love, Cristina Perez
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