10yo's swollen upper lip for over 6 months now

My 10 yo son has had a swollen lip for over six months.  His pediatrician, dentist, orthodontist (removed wire and rubber bands on brackets), allergist and oral health specialist cannot figure out what’s causing it.  I’m heartbroken.  He’s so self-conscious, embarrassed and frustrated.    He had the opportunity to participate in the opening/award ceremonies for the Rugby 7’s World Cup this weekend and really wants to.  With all the media. He said he’s afraid someone will see him on tv and say there’s the kid with the big lip. It breaks my heart because I can’t help him and we continue to search for reasons why this is happening.  He was taking Zyrtec for over a month to see if that would help and it didn’t. Has anyone experienced something similar??  With five different doctors, we still don’t know what’s causing this.  

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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.