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Speech, To Take a Break or Not?

Speech, To Take a Break or Not?

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.

speech therapy

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.

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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!


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Your Child’s Hearing

Your Child’s Hearing

As with any child you are going to worry about their development, but especially so when your child  is already facing challenges due to their being cleft affected. Your child’s hearing is going to be another ongoing aspect of care you are going to need to be diligent about, which is why an ENT is an integral part of your Cleft Palate Team.

Our son showed signs of hearing loss as early as 2 mos. of age when we  first noticed that he was not responding to our dog barking, the telephone ringing or loud knocks at the door. It was determined that he had fluid build up in the middle ear directly related to the cleft palate. He received his first set of PE tubes at 3 mos. of age during his cleft lip repair surgery. The ENT informed us that he had cleaned his ears out and immediately the fluid began draining after the placement of the PE tubes. When we brought him home there was a marked difference in his hearing and we were relieved to hear him cry when the dog barking startled him!

Over time his PE tubes would begin to fall out and we would experience a fussy baby showing signs of an impending ear infection. He would rub his ears, have a slight fever, want to be held all the time (that one wasn’t so bad) and just did not feel right. Another trip to the doctor’s office would confirm what we already knew and antibiotics would be prescribed. Sometimes the antibiotics worked but as a long term solution they just did not; and it was back to the ENT to schedule another PE tube surgery so that we could clear up the infection and quell our fears of hearing loss.

The ENT would do a hearing test before and after his PE tube surgeries and it was always a little scary during the pre-surgical hearing test because you could obviously see the hearing loss while his ears had fluid build up. I would feel a pit in my stomach up until after the surgery when they redid the hearing test and we could see that he was responding once again to both low and high frequency sounds.

The first 5 years of our son’s life were a constant battle with his ears. His tubes would last about 10 mos. before they started to fall out.  During that grace period of no infections we were grateful (except when he caught a cold) because undoubtedly that meant an ear infection. His ears just seemed to be such a weak point for him.

I suggest you remain vigilant in your child’s care and  make sure to see your ENT at every cleft clinic visit to make sure the tubes are still in and working  properly and that there is no fluid build up.  Be sure to request a hearing test if  your ENT has not already suggested one so that you can have a baseline for your child’s hearing progress throughout their surgical journey.

For further reading on how we protect our son’s ears now that he no longer has PE tubes please see my following blog posts and reference material available:

Cleft Palate Foundation Hearing Booklet

Audiology/Cleft  Palate

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Probiotics for Cleft Affected Children

Probiotics for Cleft Affected Children

Probiotics have been incorporated into my family’s daily regimen and defense of our immune systems.  I first became seriously interested in probiotics after my cleft affected son suffered from chronic ear infections and was on antibiotics more than he was off of them in the first few years of his life.  His pediatrician brought to our attention that our son might begin experiencing GI (gastrointestinal) issues due to his gut flora being wiped out time and time again.

Again, I found myself researching and gathering information on probiotics, different strains, the best ones that would help to recolonize my son’s gut, etc.  Through my research I found that using many different products and inserting a variety of probiotic strains, as well as enzymes was going to be the best approach for us in rebuilding his gut flora and immune system.

Imagine my surprise when I came across information relating to the dental health of cleft affected children through the use of probiotics!  Below is an excerpt from a study The Cleft Palate – Craniofacial Journal published. You can read the full article at (

🙂 🙂 🙂

The Cleft Palate–Craniofacial Journal—Poor oral hygiene and higher incidence of tooth decay are often prevalent in people with cleft lip and palate. Food supplements containing probiotic bacteria can help reduce the incidence and severity of dental caries.

The Cleft Palate–Craniofacial Journal presents a study of 30 adolescents with cleft lip and palate analyzing the effects of probiotics on oral health. Fifteen subjects in the intervention group drank a probiotic milk powder containing Lactobacillus paracasei SD1 for 4 weeks while 15 subjects in the control group were given milk without a probiotic. Levels of salivary mutans streptococci and lactobacilli were measured at the start of the study and once a week for 4 weeks after use of the probiotic concluded.

For adolescents with cleft lip and palate, orthodontic treatment is usually necessary because of irregularities in tooth size, malalignment of teeth, or skeletal abnormalities. However, fixed and removable orthodontic appliances that help correct problems facilitate the colonization of bacteria such as mutans streptococci. This increases the negative impact of orthodontics for caries-susceptible patients.

Live microbial food supplements can help to stimulate natural immunity to infection and balance microflora. Use of the probiotic bacteria Lactobacillus can positively affect the oral cavity. Lactobacillus paracasei SD1 has been shown to have strong inhibitory effects against Streptococcus mutans, making it a good choice as an oral probiotic.

In the study, counts of mutans streptococci, which promote tooth decay, were significantly reduced among those patients who used the probiotic. Likewise, the good bacteria, lactobacilli, showed significant increases among the intervention group. In addition, Lactobacillus paracasei SD1 were still detected up to 4 weeks after active usage of the probiotic.

The Lactobacillus paracasei SD1 milk powder appeared to successfully colonize the oral cavity among this group of orthodontically treated cleft lip and palate patients. It was found to be safe and effective for oral use. Further long-term study of its beneficial effects should be undertaken.


About The Cleft Palate–Craniofacial Journal

The Cleft Palate–Craniofacial Journal is an international, interdisciplinary journal reporting on clinical and research activities in cleft lip/palate and other craniofacial anomalies, together with research in related laboratory sciences. It is the official publication of the American Cleft Palate–Craniofacial Association (ACPA). For more information, visit

🙂 🙂 🙂

If you are thinking of incorporating probiotics into your daily regimen for your cleft affected child you have two things to consider now when weighing this option and deciding for yourself if its good for your family.  Probiotics help to build an immune system from overuse of antibiotics due to chronic ear infections and can help to prevent tooth decay and impact the oral cavity by having a high incidence of good bacteria versus bad.

We were only looking into probiotics to recolonize his gut and found along the way that there is an even greater impact potential on his health with their use.  I encourage you to continue your research, talk to your pediatrician and make a truly informed decision when deciding whether or not to incorporate probiotics into your family’s regimen for health.

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Education Specialist for reading therapy

Education Specialist for reading therapy

As part of our son’s growth and progress, reading is yet another challenge we are working towards overcoming. The first step has been to find an Education Specialist for reading therapy.

His first grade teacher called us in for our parent/teacher conference and what we already knew was confirmed.  He was struggling with his reading. This should not have come as a complete shock but hearing the difficulties he was having and knowing that I did not personally have the skills to assist him was hard to hear nonetheless. Of course I set about researching and trying to figure out what steps we needed to take to get him on track and to help me learn how to teach him and get him over these hurdles.

First, we went to his speech therapist that he visited weekly and talked to her about our concerns.  We went to her first because she is working with him weekly on his speech and we believed she could point us in the direction we needed to take with regards to reading. Speech and language are all connected and I simply did not know where to start.

Through a great deal of research and phone calls I was led back to his initial speech therapist, Julia Hobbs Speech Pathology  and I’m so glad I did!  She and her staff, Angie of course kicked it into high gear and began putting things into motion.  Gavin was coming up on his Spring Break and they were able to maneuver schedules and get us in for an evaluation with an Education Specialist they were raving about.  We went and it was a 2 hour evaluation with a break at about the 1 hour mark.  Gavin was a champ and made it through the evaluation giving them everything they needed to get a true assessment of what specifically were his challenges.

It was interesting to hear the specifics of where he was faltering and they assured us that he would overcome these obstacles and be well on his way with his reading and writing.  The only thing was the cost of seeing a specialized therapist and the insurance not covering it. Our son needed this help so we were going to have to figure it out but it was not going to be easy.  That and his speech therapist quit in the middle of it so not  only were we in the middle of trying to figure out how to get him the help he needed reading but we needed to find a new speech therapist that specialized in working with cleft affected children!  Geez, when it rains it pours people….

I am happy to say that there are very generous people out there and our fabulous extended family over at Julia’s office took the liberty of applying Gavin for a grant through St. John’s Hospital to cover his Education Specialist.  We got this fabulous phone call from Julia informing us that it would all be covered for one year and we could begin therapy the following week.  On top of that the therapist lived near us and was willing to come to our home to work with Gavin rather than having us drive all the way to the West Side during the week.  Great news!  I don’t have to drive on the 405 and I don’t have to pay?  Ah, the catch. There was one.  There always is, isn’t there?  The therapist was full with her  schedule and could only see our son at 2 p.m. even though he gets out of school at 3:12 p.m.  ( I know, 3:12 right?  Seriously…) I was able to get in touch with his teacher after school and explain the situation to her.  She understood his need for this specialized therapy and told me not to worry about it that we would figure it out so that he wasn’t missing everything in that last hour each week.  She would double up on his homework and send it home for us to do or move things around so that he was learning those lessons earlier in the day.

What a blessing it is to be able to have all of these people around us working together to make sure that Gavin gets what he needs.  It makes things hard for everyone and schedules are thrown off but somehow it all comes together and begins to work.  Gavin is getting the help he needs and I am learning how to help him even more here at home.  He is starting with a new speech therapist and she knows his Education Specialist quite well so they are keeping in contact and making sure they are coordinating their efforts to make sure Gavin is getting the absolute most out of his therapy.

A great deal has happened and all in a short time but it is true when quoted that all things happen for a reason.  Perhaps this is the change that we all needed in order to facilitate this next phase in our son’s care.  It’s a new chapter for all of us and I continue to be amazed and grateful to those we have around  us caring for Gavin and wanting him to succeed and share in his successes as much as we do.

So much love to Julia Hobbs and her team of specialists!  Angie –  you are a force to be reckoned with and you get things done just like you say you will!  To Mrs. Z. for her willingness to work around Gavin’s school schedule and allow him to leave an hour early each week for his therapy while making sure he is still getting the work  he needs to complete in class, done.  To my parents who enjoy getting a weekly dinner with our daughter as we are no longer at home in the evening one night a week for speech therapy – thank you!  My village – my people – I love you!

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Sign Language

Sign Language

As your child grows and begins to babble you will notice that it is going to be slightly more difficult for them to form the words you and I are used to hearing.  This is going to cause a great deal of frustration both on  your part and your child’s because they are not going to be able to express themselves in quite the way that they want to.   You may experience anxiety of your own because you simply cannot understand what your child is asking for and so tension tends to run high during your already busy day.

Early on our son began going to private speech therapy and for us this was at approximately 17 mos. of age.  This was important because they worked with our son to improve his tongue movement and strengthen his oral muscles so although you might think that going to speech therapy so early when they can hardly speak sounds ridiculous it truly is an important step in your child’s progress with language.

At speech therapy we spoke at length to his therapist about our frustrations at home and our child’s inability to communicate with us what he wanted and  how tantrums were becoming the norm for us.  Our therapist suggested we begin introducing sign language as a way to communicate and to eliminate the frustration between us so that he could then focus on his language building skills yet still have a way to get out what it is he is trying to say.  They showed us a few “signs” that we could get started with and to go to the internet to look up signs as we needed them.

This was incredible!  We went home and the first  sign we tried with our son was “cup” so that he could begin telling us that he wanted his milk.  He picked up on this within the first day of showing him and would get such a big smile on his face after he was able to “tell” us what he wanted and actually have us get it for him.  We began introducing more signs for him while continuing to say the word we wanted him to say.  Most of the time  he could only get out the first letter or sound and that was okay because he was trying and he was still getting what he wanted and we were able to understand what he wanted.

My daughter picked up on the signing as well and he was able to communicate with his sister and shortly  thereafter the grandparents also began seeing us sign and would keep with it so that he could go to any one of them and express what he wanted as well.  We saw a change in our son that was immediate.  He was no longer throwing himself on the ground out of frustration and we were no longer wanting to pull our hair out over not being able to understand our child.

We found it easier to get him to try and say the words of things he wanted even if he could not get the whole word out we were getting to understand his language.  For example, “milk” came out as “miii” but he was trying and he could say the beginning sound so eventually the end of it would come.  I encourage you to speak with your therapist about getting some guidance on a few “signs” you can use and incorporate them into your own household as a way of communicating with your little one.

Here is a link to help get you started.  The website has a few print printable charts and you can even look some of the signs up on YouTube to see how to actually do the sign correctly.  Early sign language with your baby is not something just cleft affected children can  use to communicate.  A lot of parents with typical children incorporate it into early learning and find it useful so this is just another tool for you to experiment with and see how it works for your family.


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