My poor son's lips started looking like this shortly after he turned one. They started out as just little cracks on one corner of his mouth and shortly thereafter it spread along half of his bottom lip. A few months later it affected his entire bottom lip. Shortly after that it spread to half of his upper lip. We took him to the doctor who thought it was because he licked his lips. We saw multiple dermatologists who said the same thing. They gave us creams, ointments, pills, chapsticks, antibiotics, steroids, anti-fungals, anti-bacterials, prescriptions, over the counters. Everything. Nothing helped and they only seemed to get worse.
After battling it for a year and a half and seeing countless doctors who basically said they had no clue, he was put on a dose of prednisone for asthma difficulties. A few weeks later it cleared up and remained clear for 8 months.
Then in August of 2010 it started coming back. A few weeks later he became very ill with mono and I wondered if the two were related. We went back to the doctor, were assured that it was unlikely they were related and got referred to four different dermatologists who each proved to be less helpful than the last. Our son has battled asthma and seasonal allergy issues for years and as a result also has super sensitive skin. So, I started doing my own research and suspected it may be eczema, triggered by some type of allergy, be it something he comes into contact with regularly or food. So I started making my own laundry detergent, removed the likely environmental culprits, changed his toothpaste.
Around the same time a friend contacted her brother in law (a doctor in another state) on my behalf who took a look at his medical history and the pictures of his lips. He kindly called me and offered some helpful suggestions, one of them being changing his toothpaste, which we had already done, and told us to avoid a few other things he was likely to come into contact with. He mentioned that if none of that helped then it could be a food allergy. When I mentioned this to the four dermatologists here they were quick to dismiss this as a possibility. They assured me this wouldn't be likely all the while I had this nagging feeling that it was related to food. The last dermatologist we saw I asked if he would allergy test him for the most common allergens and he said he did not feel it was necessary. I insisted; he declined.
Occurring concurrently with this was increased sensitivity to so many things he was coming into contact with. The underwear band was causing horrible rashes and hives around his waste. We spent weeks trying to track down underwear that didn't have a rubber band exposed (Thank you H and M). He was having horrible reactions every time we went to visit his great-grandmother. She has an inside dog and his face would break out into hives and swell until his eyes were mere slits each time we'd visit. We knew a dog allergy was unlikely since we have an outside dog at home, but suspected environmental allergies that the dog tracked in along with dog dander. Then, we went to the store to try on bicycle helmets. A few of the ones he tried on had rubber pads inside. A few hours later his head had a horrible rash in the pattern of the way the pads were placed on his head. A few hours after that his face was swollen.
I called his doctor who ordered an epi-pen over the phone and who then called in a referral to an Allergy specialist for the next day. Monday he was tested for 20 different allergens. We go back in six weeks for a more expanded panel. The allergist took one look at his lips and is fairly confident it is a result of a food allergy. The results came back showing he was allergic to a host of environmental things as well as Cow's milk, soybean, and tree nuts.
Our plan is that for the next 4 weeks he can have nothing that contains or has been in contact with any of those items. And let me tell you it was SHOCKING how many food items contain those things. It took us 3 hours at some specialized stores to find him alternatives to regularly consumed foods. Soy or soybean oil is seemingly in everything! After those 4 weeks we should see improvement in his mouth, if in fact a food allergy is causing it. At that point we have to start adding the known allergens back to see if we can figure out which group of foods in triggering the reaction.
Truthfully, it was incredibly disappointing to know that he is allergic to so many things, but it was also a great relief to finally have some type of answer. It seems like I had tried everything with no results and was at whits end. To finally have a glimmer of hope that we might be able to heal and then control this is a huge weight off my shoulders.
So far he is doing well. We replaced his milk with Rice Milk, which he likes. I have made my own bread for him to use with sandwiches. I had to also make my own mayonnaise. He eats a lot of fruit for snacks and as parts of meals so that was good. Many of the Boulder and Kettle chips don't contain allergens so that was also a "treat" for him. There's not a good cheese alternative so for now it has just been eliminated from his diet. We've had luck with the Enjoy Life brand in finding him some snacking food and my husband actually found non-dairy, non-soy, non-tree nuts chocolate chips and I made cookies (using canola oil in place of butter) as a treat that were actually delicious. Better than the regular chocolate chip cookies I usually make actually.
It is definitely an adjustment and may prove to be for life, but it is doable and necessary and he has been great about it. I'm definitely hopeful that his lips will improve and we'll be able to identify the trigger and know to avoid it in the future.
Interestingly, many of the creams I had been rubbing on his lips contained soybean oil. So, all this time while I have been trying to help him I could have inadvertently been causing more problems. My heart is crushed with this realization.