My daughter is 15 years old and has to have her TMJ s replaced on both sides

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  • My daughter is 15 and has had many jaw joint surgeries, including a total joint replacement of her right TMJ when she was 11 (long complicated story but we were out of options due to ankylosis making it so she could not open her mouth more than 4 mm and other, less extreme surgeries being insufficient to stop the bone from regrowing). Happy to PM with you or even talk by phone about what to expect, what to ask, etc. if you like. Our daughters are the same age so my daughter could perhaps also chat with your daughter. What hospital are you having it done at?

  • She is having her surgery at Children's Mercy Hospital. Her surgeon is amazing. She is having both of her TMJ's replaced, because they are bone on bone. How old was your daughter when she was diagnosed?? Feel free to add me on facebook, I would love to have a mom to talk to that can relate. Their are so many great people in this group I just <3 it!!

  • I wonder if there is also a local church, temple, companion animal group (i.e. therapy dogs), or volunteer organization that sends people to cheer up kids in the hospital?

    Wishing you and your daughter strength and good luck!

  • Teri Keith Sabade Johnson

    I thought of you!

  • Thank you so much

  • Thank you!

  • Hi Linda Souders, my daughter, Ashley had this surgery in Oct. 2015, and she was also 15. I can't believe we are this far on the other side of it. It was kind of like climbing Everest for me. The preparation was grueling and horrible (we had to change surgeons midstream because of insurance - another long story), and then the surgery and recovery were pretty intense. There will probably be a couple of days, at least, where she might not want visitors, but then while she's recovering and not able to get out, go to school, or much of anything else, a visitor here and there are really great. We were in the hospital for 4 days (that varies, it just depends on how quickly they can get the pain under control). Our family was pretty good about visiting and I think it made the hospital stay at least tolerable, so if it were me, I would let everyone know, "hey people, this is a big deal and she could really use your support." I kind of had to do that with her youth minister. We go to a huge church and I think she just fell under the radar. They were very gracious and came to see her, however, Ashley got very lonely while she was stuck at home. She missed 6 weeks of school and it was quite a while before she could even take a decent shower. They took a little tissue from her tummy to put between the titanium replacements and jaw joint so she couldn't get her stomach, hairline, or jawline wet. We were just joking the other day about what a greasy mess her hair was! She's very shy so she has a hard time asking for things from people, but I could tell she was pretty bummed. If your daughter would like to communicate with Ashley, I think she would be happy to talk to her about her experience. She too was counting down the days because she was tired of looking like she had no chin. If you'd like our email addresses, and Ashley's instagram info, feel free to message me. I'd be happy to help you out as much as I can ;) Hang in there - if you're a nervous wreck, that's ok. You're a mom - it's what we do.

  • Thank you so much. I feel so overwhelmed right now. I usually don't get to worked up about her having a procedure, but this is so much more. They have never had to cut on her., and her surgeon said that it will take at least 6.5 hours. I am going to have to have something to keep my mind on or I am going to freak out. Haley would like to add Ashley to her instagram. Your encouragement and details of what Ashley went through has really helped. I would love to communicate by email. Again thank you and I am so glad your daughter did well with her surgery. I hope she is doing well.

  • My 6yo has JIA in her tmj too :(. No talk of surgery.. she has a follow up tomorrow. We will see how well her infusions are helping. We will def send her a card! We are your family too! United by the desire to help our kids and ourselves to get a handle on this disease!

  • I added you on FB :) My daughter was diagnosed at age 2, so we have been at this a while. Post-op she was in the hospital for just over a week and back to full activity (including heading off to a super active sleepaway camp) 4 weeks after surgery. One thing I recommend is get in touch with child life at the hospital ahead of time to discuss things your daughter might be comforted by during her time in patient, especially if you may not have many family coming to visit. Our daughter's surgery was at Boston Children's and once she was out of ICU (their policy requires at least one night in ICU after this procedure) she was able to have therapy dog visits (which she LOVED!!!). The pain meds made it hard for her to read so we did lots of crafts, and lined up a couple of her close friends to come for visits a few days post op. Our daughter had to wear a pressure wrap for several days post-op and also had an external drain for 72 hours, so that can be tough for friends if they have any fear or discomfort around blood. Also, she will swell A LOT, even with the pressure wrap, so that is helpful to know so you can prepare folks.

  • Thank you Kim Ferguson-Johnson. Haley has had TMJ issues for probably 5 years, she had injection in her TMJ's that helped some back then, but this time the injections didn't help at all. Thank you for your kind words and thanks in advance for the card. I am learning that this group is filled with great people.

  • I just sent you a message with Ashley's instagram name. Also, one thing I just thought of - we were not at a pediatric hospital, so the nurses were a little "eh" when it came to bedside manner.... :/ anyway....make sure they order all the medications in suspension form while they are weaning your daughter off of morphine. I had to go a little nuclear on them trying to give her pills the day after a 9 hour jaw surgery. She was in a splint and could barely open her mouth - I thought I was going to smack someone! Other than that, take lots of clean underwear. Like I said, we were there for 4 days. I was so gross I could feel my leg hairs poking through my yoga pants! (sorry TMI). My husband relieved me one night so I could rest up before we brought her home because I knew I would be ON for the next few weeks solid. Day 2 was the worst because she was having trouble swallowing her medications and staying on top of the pain. So needless to say I didn't want a repeat of that day - everyone was crying! I set my phone to go off every 4 hours, slept in the guest room with her for at least the first week so we didn't miss any doses. I wrote everything down that I gave her because I was delirious and couldn't remember. She was really worried about getting addicted to the the hydrocodone, so she weaned herself off of that very gradually as soon as she could tolerate the pain level. And it doesn't matter how gradually you wean off of that junk, they will get a massive headache, so just be prepared and let her know that Ashley is here for her and we will be praying hard for you both. Honestly, I was a MESS leading up to it and was a robot during her recovery. But make sure you take care of yourself. Fortunately I am married to a superstar and he and my younger daughter were great helping out. Oh yeah, our house was on the market during that time too - don't do that either! HA! She and I look back on that time with fondness and really good memories. We spent A LOT of time together, so I was very thankful for her friends who came to visit. She was a very good patient and that really helped a lot. When people ask how they can help you - don't be a hero, let them know if you need them to bring you a gallon of milk, or help with a meal, or just to come sit with her so you can leave your house. This will all pass and this time next year you will wonder where the time went and your daughter will be able to open her mouth for a teeth cleaning without crying. :) Blessings to you both!

  • My daughter did 6-8 weeks of the ionto treatments and her mouth opening went from a 26 to a 42! We didn't learn that she had JIA until about 8 months after she started dipping her food in liquid to soften it.. we assumed it was a gross phase, but she had acclimated to her situation Bc I can only assume the pain was her normal and she didn't know how to articulate her discomfort.

  • I wish we were close by. ❤️

  • Anyone interested in sending cards to Haley Jane you can send them to 12141 W 76th St #305 Lenexa Ks 66216 Please send them in care of me Linda Souders. Thank you in advance!!!! Love this group and all of you caring wonderful moms.

  • Good luck with the procedure!

  • Haan-Fawn Chau Thank you so much.

  • Sending out a card today!

    Linda Souders -- if you have time, it might be helpful to update your original post to include your address up at the top. That would make it especially easy for people to refer to.