The eve of Christmas Eve, Nolan stayed the night at my sister’s house, Ti-ti’s. Nolan soon found his interest at Ti-ti’s: Netflix + Thomas the tank engine videos + the computer. He had headphones and could control the volume himself. He LOVED it! Well as my sister was making dinner, Nolan was watching a video of Thomas and slipped somehow and knocked his tooth (front left one) on the coffee table. He cried and there was some blood, but it looked more like it hurt his lip then his tooth. He ate fine! Justin and I were having an evening to ourselves, so my sister didn’t want to call, especially since she thought it was fine. The next few days Nolan was a little bit fussy, but it was Christmas Eve, Christmas Day and lots of family gatherings. Sunday evening, Justin and I decided that we would have his tooth get looked at by a pediatric dentist. Both of us didn’t think anything was ‘wrong‘ but wanted to have it looked at anyways.
I took Nolan to the pediatric dentist down the street who took Nolan’s insurance. I was NOT expecting to hear what I heard. They needed to extract his tooth and it needed to be done immediately. They said there was an abscess and infection would follow and his pain would increase if it wasn’t dealt with. I was floored. It gets worse: Nolan couldn’t have the sedative they use and the dentist proceeded to tell me “he still needs to get it out..he will remember, but he will put a blanket around him to keep him from grabbing.” No other options? No other drugs? So I scheduled the extraction for two days later (so that I would have enough time to research and make sure this was the only option).
Option #1: I found a compounding pharmacy who told me they would be willing to compound the sedative drug so that it would be suitable for Nolan. In order to do this, they needed to speak with the Dentist. The dentist said they were not willing to work with a drug they weren’t familiar with. I was becoming more and more infuriated. I told them I thought it was odd and inhumane that they would be willing to extract my son’s tooth without any pain reliever or drug. This dentist was not even willing to speak with the pharmacy.
NOT EVEN WILLING!
Option #2: Find another dentist who would be willing to help. This was complicated procedure I found out. Given’s Nolan’s age, insurance, and timing (many offices were closed between Christmas and New Year’s) this was becoming an impossible task. I even called my cousin, on vacation in Chicago, who is a non-practicing dentist who knows about Nolan’s FPIES for her advice. At this point I was loosing my confidence in this first dentist: her practices seemed more and more shady by the hour. I tried everything I could think of. I called three ER departments to speak with their dentist on call. I called dental schools’ ‘clinics’. At this point I was still under the assumption that Nolan’s tooth had to be taken care of pronto, or else. At 6 pm that Monday evening, I told myself there was nothing else to do and to just rest the remainder of the evening.
SOMETIMES that is all that can be done.
The following Tuesday I called my cousin (different one) who is a practicing dentist to see if they would be willing to see Nolan to even know if he needed his tooth extracted, etc. After the first dentist would not release his x-rays, my cousin suggested a pediatric speciality dentist office they would refer Nolan to, if he needed it extracted.
They got me in the same day!!
Thankfully my mom has Tuesdays off of work, so I was able to take Nolan by myself. Nolan was his exceptionally charming self. I brought an article about FPIES to the appointment. Every dentist on-site read the article and were positively interested in him. Two dentists came in to ask questions, because they were genuinely concerned about Nolan. Pediatric Dental Specialists specialize in special needs pediatric cases. I was so utterly impressed with their professionalism and more importantly their care in Nolan’s health. Such a drastic difference. The dentist who examined Nolan was appalled at what the previous dentist said. I am sooo glad I trusted the mother’s instinct. This dentist didn’t see an abscess or infection but noted the tooth was loose and therefore an abscess or infection could occur. She ordered for us to come back in a week for a re-check. She warned the tooth still may need to be extracted, but she wanted the tooth to have time to try to heal itself. AMAZING!!! She re-assured me they would not take out a tooth without any medications! My stress level rocketed back down to normal level and we went on with our day.
The first dentist meanwhile (after I called to cancel the surgery) called to ask for the information about the pharmacy. I professionally explained that we had found a dentist who was willing to help Nolan more responsibly. I told them it was un professional, in humane and ridiculous she would consider doing such a procedure to such a young patient without consideration of him. I told them it was a slap in the face that she would be willing now to help after the hours upon hours I had spent finding another suitable dentist. I told them we were done with their office and no reason to continue the conversation.
Later that week, Nolan was visibly in pain and not eating well and I knew his tooth was starting to bother him, as were warned it may. I called the dentists who were on call from the New Year’s holiday. I was given a plan of action of going to the hospital they had privileges at if he started to get worse or the pain was intolerable. We “eeked” it through the weekend and to our follow-up appointment.
The result: Nolan’s front left tooth had to be extracted. It was a huge bummer for me, but Nolan took it like a champion that he is. They were able to give him a numbing drug as well as a nitrous oxide. After he calmed down from the surgery, who would have never ever known anything had happened. I got a compounded pain reliever in case Nolan needed it. I gave him one dose of pain reliever, more cause I needed it. He never once complained about pain. He ate crackers the same day and was very happy to play with his sister. It was confirmation to me, that his tooth had been causing him pain and this was the correct decision.
It has taken me some time to still be ok with the idea of my son not having one of his teeth. He is absolutely fine with the idea and was extremely happy to have the tooth angel come and give him a Thomas the Train puzzle!
Again, Nolan is my little brave noble champion! I am so proud of him!
I grieved the loss of my son’s tooth, because I felt like Nolan wasn’t given the proper chance to keep his tooth because of this horrible no good annoying illness, FPIES. Without the FPIES, Nolan could have been given more of a chance to save his tooth (medication and time)! I felt as though FPIES took my son’s tooth and it made me mad that Nolan again was given the ‘short end’ of the stick. I just wish something would come easy to him! Not for everything to become an up hill battle.