Okay, I am one P R O U D Mama! For many reasons, but in this particular instance I am smiling because my cleft kiddo was asked to be part of a photo shoot his orthodontist was doing for an article South Bay Magazine was featuring her in for her incredible work with cleft kiddos and children with many different craniofacial anomalies. He is proud of his smile and so are we. He is the littlest guy in front; white shirt. That’s my Gavin!
Well, we ended up getting to our 3rd palatal expander with Gavin. The left bracket kept breaking apart in the same location due to his inability to leave crap alone. The 3rd expander our ortho built with more anchors so that it could be rigid and not allow for him to keep messing with it AND worked for almost 4 weeks! We were able to turn it every night and then the night before our appointment, guess what? “Mom, my expander is loose, again!”
It has been a trying four weeks folks. I have been all over him to keep his hands out of his mouth, to use his WaterPik after every meal and to make sure he was brushing properly and removing all of the food that was getting stuck in and around the metal contraption. He has had some sleepless nights complaining of his jaw aching, which I know must have really hurt because he actually asked for Tylenol a couple of times. This process is definitely a process for all involved.
Showed up for our appointment and thankfully we are done with turning the expander. It was supposed to remain in for an additional 8 weeks. Since it was broken yet again, it was decided that a permanent bar would be put in and accelerated in the timeline rather than having another expander made to just hold things in place for 8 weeks. I am hoping that the permanent bar will be less intrusive and that this kid will be able to handle it better than the expander. Here goes nothing, right?
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
Yup, you read that right, the palatal expander lasted for one whole week! We even went on vacation with our water pik in tow and wouldn’t you just have guessed that the night before our follow up appointment with the ortho, my 8 y.o. walks into my room and says, “mom, something’s not right with my expander.” I get up to look and can clearly see one side of the expander just hanging down and not at all attached! I’m like, “what the $%#!?”
So, I tell him to push it back up and see if he can keep it there for the night until we get to the ortho in the morning. It’s still very much attached on the other side and pulling it downward actually hurt the teeth it was still attached to.
Next morning we are headed to the ortho and needless to say she is not ecstatic with Gavin’s expander having lasted a mere week! Neither. Am. I. We haven’t even paid for the first one and now we need to tack on a second one that has to be made. This 5 min. follow up appt. turned into an hour ordeal of new impressions, fittings for brackets and spacers being put back in. Grrrrr….
Of course it would be my son unable to keep his tongue and fingers off of the metal contraption in his mouth,the incessant wiggling and prodding around that caused a stress fracture on the one bracket, thus breaking it apart completely. My son IS however, the glass is half full kind of kid, so he impishly remarks to me and his ortho that at least he can eat whatever he wants for a full week, right? He’s lucky there was a room full of witnesses. No, seriously.
That is our update for week freaking 1. Yes week one and only one. Will let you all know how we progress, should we progress….Anyone else go through a palatal expander like this?
Our son was born with a bilateral cleft lip and palate (BCLP) and has been in speech therapy since he was 18 months of age. I value private speech therapy and we are faithful in keeping our weekly appointments, incorporating speech techniques at home to gain consistency and working on a great deal of repetition.
It’s just that at this point we have now added orthodontic appointments to our ‘have to’ weekly list and he has a palatal expander and permanent bar on the bottom. We’ve been told that his cleft will temporarily widen due to the palatal expander and that his speech intelligibility is going to degrade because of the widening cleft and cumbersome contraption in the roof of his mouth. All of which we are currently witnessing.
This kid has weekly speech and reading therapy already and now we have added orthodontic appointments! His therapist believes that there is value in continuing speech therapy and that other things can be worked on while suffering through the changes taking place due to Phase 1 of his orthodontic treatment.
My husband and I have been seriously discussing our options and are leaning towards giving speech therapy a break. His speech is not going to improve while undergoing orthodontic treatment in preparation for his bone graft surgery, so why not give him a break? It’s not forever and they are estimating that he is going to need the bone graft in 6-9 months. Speech therapy can resume after healing from the bone graft.
Has anyone else gone through this and found value in continuing speech therapy while undergoing orthodontic treatment? Did you take a break and regret it? Or was it a much needed break for your cleft kiddo that allowed them to just deal with the ortho stuff? We have a lot to consider and once we make a final decision I will post an update. Any input or feedback, even from a therapist’s point of view, is welcome!
Our son’s tongue is tied, but not so much so that his plastic surgeon or speech therapist recommends that he have surgery to clip the frenulum (tissue that is connected to the underside of his tongue) right away.
When our son sticks his tongue out the tip of his tongue gets pulled into a “V” shape and he calls this his lizard tongue. His surgeons tell us he is tongue tied.
Thankfully, our surgeons understand and agree that there is no need for an unnecessary surgery and since it is not affecting his speech therapy and progress thereof, it’s off the table for now. However, should he require a dental procedure where he is going to be numb anyways, or have to go in for ear tube surgery; while already under anesthesia, the frenulum can be easily clipped. The team dentist also believes that it should be clipped because of the constant tension on the gum tissue on the backside of his lower teeth. We were told that his gum tissue could eventually erode and cause problems later on down the road with not enough gum tissue being there. If that’s not enough to want to consider having it clipped, his dentist then told us that we are going to want to make sure to get that frenulum clipped because (get this) it will make him a better kisser. Better kisser? Better kisser? Seriously? He’s only 7 years old for crying out loud!
My son reached over, grabbed my face AND kissed me! He then looked at everyone and said he “didn’t need surgery because he can already kiss good.” Ahhhh….so cute my little guy is! But seriously, our team dentist told us that he has limited movement with his tongue and that grown cleft kids come in and ask for their short frenulum to be cut so that they could have better tongue movement and make them a better kisser.
Who knew I would be having to consider having my son’s tongue tissue clipped so that he could grow up to be a better kisser when the time comes? Sometimes this mom gig is too much! My young son is proud of his lizard tipped tongue and thinks its pretty cool so the whole kissing thing can wait…for now.
Any other cleft mamas have to deal with their cuties being tongue tied? If so, what did you decide to do and at what age? Did it make a difference with their speech?
Lord knows I don’t want my son to grow up and be upset with me for not giving him the best chance at being a champion smoocher! Just another day of being a cleft mama I suppose…:)
As you may already know, having a cleft affected child means you need to be diligent when it comes to their dental care. It is not uncommon for cleft affected children to be born without some of their permanent teeth so taking care of the teeth they do have is of the utmost importance. I cannot tell you how many times I have heard the phrase “where there are teeth, there is bone.” So keeping the teeth your cleft kiddo has, is without a doubt, an important factor in progressing towards the inevitable bone graft surgery.
Finding a dentist that has experience working with cleft affected children is also important as that dentist needs to work with the bigger picture rather than just handle what is going on at that moment. You will hear “where there are teeth, there is bone.” Knowing this means that keeping those teeth intact is IMPORTANT.
When you have your Cleft Palate Team visits one of the team members will most likely be a dentist or an orthodontist. They will explain to you their “dental age” and what the plan will be for their bone graft surgery should that be a surgery your child is going to need.
We live in the South Bay and were lucky enough to be referred to Frank Enriquez, DDS of South Bay Pediatric Dentistry. They are geared completely towards the kids and my son LOVED it there! They were playing games with him, had him watch a video about brushing, and then he had a lesson in brushing. Dr. Frank and his staff had a 360 degree X-ray of our son’s jaw done (which he thought was so cool) and we were able to see his permanent teeth sitting below his other teeth. It gave us a great deal of relief to be able to see all of that and know what to expect.
Remember that early intervention, brushing, and having not only a good dentist but a great one that cares about your kid as if they were his is rare. When you find that “one” keep him! Ours came highly recommended by the staff at the Cleft Palate Center of Providence St. John’s Hospital, Santa Monica (he used to be on the Cleft Palate Team) and his experience with cleft affected children is outstanding. If you are in the area and can get to their office – make an appointment!