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Plastics

by Summerly Rowlands

September 2023: We were set to meet with our craniofacial team consisting of plastics and speech in January, but it was recommended to us from Help Me Grow to schedule this appointment sooner. Due to their concern of Izzy’s lack of language but complete comprehension, they thought maybe there was something that needed anatomically corrected.

As it turns out, they could possibly be right.

Summary of craniofacial visit: Although Izzy doesn’t have an exterior cleft palate which is common with 22q, there is a 90% chance with her diagnosis that she has a cleft palate under the roof of her mouth that we cannot see. This would be a structural abnormality keeping her from having the ability to talk. There are only 3 sounds that a human can make without typical palate function, so if this is her case, she will need palate surgery. Due to her history of nasal regurgitation, certain signs are pointing this way.

However, oral examination shows normal esophageal lining and, by touch, a palate that is intact with some movement, along with all extremities appearing normal.

So what’s the answer?

At this time, there is not enough of a speech range to determine if Izzy has Velopharyngeal insufficiency. Velopharyngeal insufficiency (VPI) occurs when the seal between your oral and nasal cavities doesn’t close completely. The condition is often associated with palate defects or genetic disorders. With VPI, air escapes through your nose during speech, causing a nasal sound and other speech issues.

The immediate plan is for “intensive speech therapy” to start once a week with close monitoring between speech pathologist and surgeon who work together in the craniofacial unit at Akron Children’s. After some time in speech therapy, Izzy will have x-rays taken to provide more information. As of right now, they are diagnosing her with “moderate to severe expressive language disorder”.

The reason on waiting for x-rays is to allow Izzy to build up her vocabulary (if possible). She needs to produce certain sounds in order for the doctors to be able to assess if her palate is in fact affecting her ability to speak. Typically, a child needs to be 3 years of age before they can produce enough words to be able to go through this x-ray study.

This x-ray study is more complicated than a normal x-ray because the palate is muscle, and the muscles could all be there but just not functioning the way they should be. For this type of study, a dye will be dropped into Izzy’s nose and then she will be asked to say words/make sounds. The x-ray will show how her palate is moving and if it is moving far enough back onto the posterior portion of her throat. This will then tell us whether or not Izzy’s palate is the reason she is not able to speak correctly, and it will also tell what specific type of palate surgery is needed, if any at all. Basically, it’s harder to figure out if the palate surgery is required when Izzy is only attempting two noises (mama and uh-uh).

We are scheduled to come back in October 2024 but this could change depending on what speech relays to plastics.

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Izzy had a follow-up appointment with her plastic surgeon and nurse practitioner on 9/6/22 to continue to measure and monitor her jaw size and breathing/sleeping patterns. As we know from this appointment and previous, Izzy does not have a cleft palate, she does not have a tongue tie, and she does not have sleep apnea. Although up until this point Izzy’s lower jaw has measured smaller than normal (“micrognathia”), that is no longer the case! We were informed that her face has grown just as it needed to and her jaw now measures completely neutral! Talk about AMAZING news!!! 💜 Because there are no concerns at this time, her next appointment will not be until January of 2024 for a speech evaluation.

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1 year old update: Yearly appointment scheduled for September!

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As 2021 comes to an end, there are no changes with plastics.

Since discharge on July 30th, Izzy has had 1 plastic surgery appointment. She was scheduled for a 3 hour visit with the entire craniofacial clinic team consisting of 7 providers – ENT, Audiology, Genetics, Surgery, Social Work, Speech, and Orthodontia – but thankfully, after meeting with the surgeon at her regular appointment, he confirmed that we could cancel the 3 hour visit with the team, as Izzy does not need that type of treatment as of now. Plus, she already sees 3 of the 7 and her insurance is taken care of, so no need for social work.

The same issues addressed previously were addressed at this visit – small jaw & no cleft. The surgeon told us that we could schedule to see him annually or wait until Izzy turns 3, as that is around the time that speech concerns may begin to develop. He told us what to listen for when she begins talking.

Last plastics appointment of the year was August 31st. Next appointment is scheduled for August 2022 if we choose to go in before Izzy turns 3.

Knocked after a day of appointments 😴