Swollen Lips
Parent Q&A
Archived Q&A and Reviews
Teen's sudden swollen lips and tongue
March 2004
My lovely 15 year old niece has been suffering from a strange syndrome - a sudden swollen lip (huge) and tongue with difficulty breathing. These episodes have landed her in the emergency room a few times. I was hoping someone on this distribution has knowledge of this syndrome. So far the doctors have been unable to pin point a cause or cure.
I'll try to summarize her symptoms:
About a year ago she woke up several times with a huge swollen lip. Initially, her parents looked at a latex allergy (she did not react to scratch test but the test has many non responders) so she began carrying an epipen (epinephrine). Beginning in November, she experienced episodes where the back of her tongue would swell and she felt tightness in throat, couldn't inhale, wheezing, and stridor. The epipen would clear this up within a minute. Sometimes she would be able to use deep, slow breathing to get through the episodes.
She continues to wake at times with a huge swollen lip or tongue, frequently just on the left side. It does not seem related to which side she sleeps on. The episodes of difficulty breathing often begin with a sudden tightness and choking, sometimes no swelling is visible, sometimes no wheezing occurs. Her parents keep track of food, activities, environmental odors, stress but no pattern yet. They have identified one cleaner that seemed to trigger two episodes but not present in any others.
A lot of medical evaluation has been done. My hope in asking this question is to learn what foods, activities, etc other people have seen cause edema (swelling). I am especially interested in facial swelling and anapylactic shock. Has anyone experienced it with chewing gum? Or in conjunction with lack of sleep or really deep sleep? Thank you
Some food allergies that can cause swollen lips and tongue (or anaphelactic shock...sp?) are Nuts, eggplant, citrus, parsley, cilantro, cumin, cardammon, other indian spices. Those are the one's I've heard of. I bet there could be more. Good luck finding answers for your niece. anon
Hi, I sympathize with your niece. Two sources might be helpful in tracking down the possible offending substance in her environment: Jacqueline Krohn's (MD) Allergy Relief and Prevention, and the magazine Living Without (quarterly). Also, a good applied kinesiologist could help you track down the culprit. Such rapid responses suggest an encounter within the hour or so prior to the attack. A few random questions to ask; does she have flame retardant material in her mattress? What toothpaste is she using? Switching to baking soda and salt for a time could eliminate that possibility. Nori
Your post reminded me of an incident that happened to a boyfriend of mine about 15 years ago. He and I ate dinner at Wendy's; he had the salad bar. He was fine when we went to bed, but woke up in the middle of the night with his lips so swollen he could barely speak. It was pretty horrifying--I've never seen anything like it. We went to ER, where they said that he probably had a reaction to (as I recall) a preservative used on the salad in the salad bar. They gave him some medication to bring down the swelling. It took awhile for the swelling to come down; not sure how long, but maybe as long as a full day. Jennifer
Allergies that manifest themselves at night, during sleep, may be caused by allergens in the bedding. Perhaps the child is allergic to feathers or down that may be present in her pillows, comforters, or featherbed? Also, some no-iron percale sheets have special chemical coatings to keep them wrinkle-free, to which some people are allergic. Good luck. elizabeth
I have peanut allergies. I was 25 when I had my first outbreak. I had eaten some peanuts, fell asleep and woke up with hives and congestion in my chest. The allergist wouldn't do skin reactivity tests with me since repeated exposure can increase the severity of the allergic reponse. Instead a blood test was done, but it came back inconclusive. The only reason I know it was/is a peanut allergy is because it happened a second time right after I ate something containing peanut butter.
My aunt (not related to me biologically) has had two or three anaphalactic reactions. At first they couldn't figure out what was triggering it. Two of the events happened exactly a year a part, so there was some speculation about an allergy to a plant that bloomed that particular time of year. Eventually she also found out that she was allergic to chile (fresh or in powdered spices). I don't remember if this ended up bein the ''cause'' of the anaphalaxis. I do know that allergy tests didn't help.
The thing that worries me most about your post is that she keeps waking up swollen... what if the swelling gets too bad before she wakes! I am not a dr so I can't say if this is a good idea, but I would ask about taking Benedryl before bed in hopes that it would reduce the risk of swelling in her sleep. Good luck! no more Reeses
This is an opportunity to tell your son, and yourself if you need to, that his body is fine just the way it is. He may have a visible difference, but so what? People lead their lives with deformities, disabilities, imperfections, flaws, all kinds of things every day. Encourage your son not to let self-consciousness about how he looks prevent him from celebrating his achievements. You don't have a medical reason (yet) for what's going on with the swelling, but life doesn't wait and he shouldn't either. Don't let him hide himself.
A friend of mine had this for months. Ultimately it was due to two factors - toothpaste and oral herpes. Try a super-duper natural brand of toothpaste (or go without for a week) and try an oral herpes medicine.
I'm sorry to hear about all you and your son have been through. This is a shot in the dark, but does he have a high sensitivity and reaction to poison oak/ivy -- and does he eat mangoes? Mango contains urushiol which is also found in poison oak. My sister's lips swell up considerably after eating mangoes and no surprise, she also is highly reactive to poison oak. Another thought is maybe he is allergic to the brackets on his braces. I would also recommend you see an ENT specialist to rule out any other causes. Hope you find a solution!
My now 17 year old has had swollen lips, which get better and worse, but are always a little swollen, for 10 years. He suffered from almost constant canker sores for years, and I think it is scar tissue at this point. It has gotten better as he has aged. We discussed this with his pediatrician and dentist many times, and tried various things, but he hated the treatments as much as the swelling. Luckily his teeth are fairly straight, and we knew orthodontia would be a nightmare, so he hasn't had any. Also, fortunately, he's not self conscious about it. So, yes, we have experienced something similar, but I have no answers.
Any chance he chews on it when nervous or sleeping? My husband did this as a child, so much so that it increased blood flow during growth spurts and his lip actually grew more than the other lip. As an adult he still has a big lower lip from chewing it - and I still catch him chewing it when nervous! He did endure some teasing as a child, and his parents simply told him to ignore it and affirmed his many strengths. Just throwing it out there in case this is it and it's a simple answer vs. some unknown medical condition.
The first thing that comes to mind are food allergies, or possibly an infection. Has your son had blood tests done for those things?
Could this be idiopathic swelling? My own son has flare ups of this even as an adult. He really freaked out when it hit his throat. I can only suggest that you get a referral to with Stanford or UCSF for an opinion. Don't give up.
I am not a doctor, but the first time I had a breakout of herpes (age 15) it was preceded by a really swollen lip. Only lasted a week or two, though.
I'm so sorry to hear your poor boy is going through this. Have you looked into him having a clogged saliva duct? My husband had one removed, it wasn't that big but they can get large if ignored.
Best of luck
I feel so bad for your son. I certainly have had my share of mystery medical issues (including unaccounted for swellings, though not on my lip), and they are very frustrating.
I am not a doctor, but it might be worthwhile to see if holding a cloth-covered cold gel pack to the area for a while helps at all with the swelling. (But not so long you risk injury--check with your doctor.)
That might confirm that it's a local inflammatory local reaction, which gives you some idea how to proceed. I'm guessing that's why they tried Zyrtec, which is an anti-histamine and generally meant to soothe allergic reactions. You could explore using a different anti-inflammatory medications or herbs, oral and topical (Benadryl, aspirin, ibuprofen, turmeric, etc.).
The only other idea I have is that possibly there's a small cyst that has formed & is causing the issue. Would that show up on an ultrasound? Just a thought.
Good luck and remind your son that he probably notices it more than anyone else.
Is the swelling preceded by itching? When I was about 10-12 I went through a period of unexplained swelling on my lips and fingers. It was always preceded by itching. It went away after a year or so, but came back when I was 20, and then again when I was 40, all periods of stress. My doctor said it’s a histamine response, probably partially due to food (nitrites and sulfates, which are in practically everything, and naturally-occurring histamines in meats), stress, and even weather (heat brings it on too). I can go years without a flare up, but once my histamine levels reach a certain tipping point, everything spills over into hives and swelling.