Nothing can really prep you for the pain your child is about to embark on because of his/her cleft palate and the need for Phase 1 of Ortho Treatment. Just to the words, Rapid Palatal Expander sound scary. It seems overwhelming at first and it really is. So much information! Thankfully we have a great team and access to his team Social Worker. Everyone helped us to figure how to talk to him and get him to understand all that he was going to have to start getting done.
Gavin was really resistant at first and felt that he has been working so hard on his speech and reading therapy that he didn’t need to have his teeth moved around. He told us he was fine and speaking good and that he was okay with his face just the way it is. He was right. He is able to speak intelligibly, his reading comprehension had vastly improved and his little face is handsome! Even I didn’t have any good responses to his logic as to why he needed to suffer and go through a tremendous amount of pain prior to then having to go through a bone graft surgery.
His social worker helped us to break it down for him and us. All of his facial structures were not in the correct place due to his being born with the BCLP and his team of doctors and therapists were trying to help change that. He would be able to swallow better, eventually give up speech and reading therapy, lessen his chances of ear infections due to proper placement of Eustachian tubes, food and drink not aspirating through cleft and out his nose.
He finally agreed to begin ortho treatment. Obviously he was going to need to do it regardless but we all needed him to be on board and not resistant to the treatment.
We went through a great deal of prep work involving a panoramic dental x-ray, 360 degree Head CT, 3D print mold of his entire mouth (versus putty impression) and a few more x-rays. A lot of consults were done between his team orthodontist, cleft palate team surgeon, and oral surgeon that performed head CT. The first thing that needed to be done was to get a Rapid Palatal Expander fitted and inserted on the upper jaw. He had a permanent bar put on the inside of his lower teeth. After a month or so they want to introduce a face mask with rubber bands to begin moving both his upper and lower jaws forward. He has a front tooth that is turned completely sideways and he likes to refer to this as his “shark tooth.” After awhile and when they feel they have enough room to do so once the expander does its job, the plan is to put a brace on the “shark tooth” and begin trying to rotate it into its correct position.
When his orthodontist is confident it is is time, we will schedule his BMP (Bone Morphogen
etic Protein) surgery. At this surgery all baby teeth marked for extraction will be done, his frenulum clipped to free up his tongue movement, the one tooth he has in his upper gumline that has erupted will need to have a brace and anchor put on it to be dealt with later, and finally, the BMP injection into the open cleft palate. If that doesn’t sound overwhelming and a bit frightening I don’t know what would!
We are giving him information in steps. For instance, he needs to start treatment with the expander and bottom bar first so that is what we are working through with one another right now. Next step we will get to with him and explain that one. It’s less overwhelming for everyone involved.
Our kiddo has a long road ahead of him and we know that he is the one that is going to have to suffer through it. It’s a journey for all of us for sure but his journey is the one that is the hardest.
In my initial search for help with understanding a palatal expander and what to expect I came across this blog post, which I found to be helpful. Prep for Palatal Expander