Wow, I can't believe it's been nearly a year since our 8-year-old twins were diagnosed with obstructive/central sleep apnea. I've had some time to reflect on our journey, and I'm really excitement to share our experience! My hope is that by sharing our story, we can inspire and provide helpful ideas for other parents navigating similar challenges with their children's sleep and daytime struggles.
A brief background- Gavin and Garrett were our first children, born in South Korea they became our children thru adoption at the age of 2.
Sleep-disordered breathing (SDB) is on a spectrum, ranging from mouth breathing and snoring all the way to obstructive sleep apnea. We are all unique individuals, so symptoms can vary. I think a large part of why SDB is under-diagnosed, especially in kids, is because the symptoms can mimic a growing and developing body and mind. Parents are often told it's normal for children to struggle through childhood, or that their child will outgrow "it."
Reflecting on the past, I realize that my intuition always hinted that my sons would require additional support. I am now a part of online groups for "parents of children with sleep apnea," which can be quite emotional as a mother dealing with children who have sleep-related breathing issues. Oftentimes, we find ourselves navigating through life, attempting to determine the best ways to assist our children, yet the solutions do not come easily, and healthcare providers struggle to provide clear guidance. For instance, despite receiving a diagnosis of obstructive and central sleep apnea from a reputable medical facility, the recommended course of action was to use flonase ( i guess indefinitely?) and consider a consultation for the removal of tonsils and adenoids, a procedure they already had. Their primary care provider simply followed this advice.
It is more convenient to label a child and criticize a parent rather than to genuinely inquire and comprehend the situation at hand.
I'm now aware of how my bias towards co-sleeping might have prolonged our treatment. I kept telling myself, maybe it's normal for them to need so much support. I am so glad we did use the method of co-sleeping; this co-regulation by keeping them close to us at night benefited them greatly. So while I continue to support co-sleeping and co-regulation day and night, there is a need to address the root cause of issues. I've also come to realize how sleep training can mask airway issues. I feel blessed to have the background knowledge that I do, and resources. I have a lot of learning to do, but I hope this journey of ours can provide some insight and ideas at a minimum. I will tell you nothing we have done is a quick fix, and all of these treatments require consistency to make a difference. Sleep isn't an isolated event; our bodies and minds start preparing for sleep long before our head hits the pillow. Actually, nothing in our body works in isolation; a whole-body and mind approach in many cases is required to change function.
How did we get the diagnosis? Over 3 years ago, I sat in advanced lactation lectures like "Breastfeeding is the architect of the airway" by Jennifer Tow, MA, IBCLC. These lectures really pushed me as a lactation consultant, and before I knew it, breathing, sleeping, oral structure, and function became my world.
Ironically, in the end, my two children, who I never got the chance to breastfeed, will benefit the most from my advanced lactation training. When I gather information from a breastfeeding client, I am usually the first one to discuss their pregnancy and birth and link it to their baby's feeding difficulties. I also emphasize how effective breastfeeding contributes to optimal airway development, nasal breathing, and good sleep quality. It's all intertwined. I attended these numerous training sessions with enthusiasm to share this knowledge and tools with my breastfeeding clients, yet throughout, I couldn't help but relate this information to my twins.
Some of my twins signs included open mouth posture, snoring, restless sleep, and an arched neck while sleeping. My first stop was a reputable airway dentist who fitted them for the healthy start appliance. Following their assessment, Dr. Guy from Village Family Dental in Fayetteville, NC told me that a sleep study was necessary because of these symptoms. At the time, I really didn't know what a sleep study all entailed, but it seemed logical. We received a referral for a sleep study from their primary care provider. I knew there were going to be issues but I was surprised to discover they both had obstructive and central sleep apnea episodes. I appreciate Dr. Guy's recommendation as it prompted me to carefully consider my next steps.
When I say I had to dig way deep and start at the beginning with them, I mean it-
Twin pregnancy - intrauterine constraint
Preterm delivery, cesarean birth, nicu stay- sensory processing issues, retained reflexes, dysregulated nervous system.
Helmet therapy without body work and PT- fascial strains and continued asymmetries that moved to their jaw and oral facial movements.
Adoption trauma/early childhood trauma- dysregulated nervous system, inflammation
As Sandra Coulson, myofunctional therapist, says, "It should be breathing-disordered sleep, not sleep-disordered breathing!" You see, all of the above has impacted my boys' breathing pattern, which has led to suboptimal sleep and obstruction in their airway. The mouth breathing and dysregulated nervous system led to enlarged tonsils and inflammation in their airway. This soft tissue enlargement, on top of the structural aspects they have working against them (fascial strains, asymmetries in their jaw, and a narrow recessed jaw), is a recipe for disaster - like obstructive sleep apnea, OSA.
Palate Expanders. Structurally makes the airway bigger by widening the palate and in some cases lower jaw.
With the new diagnosis in hand, we were fortunate to have another airway dentist step in to help. Armed with a scanner for a comprehensive airway assessment, along with her colleague and orthodontist father, we quickly teamed up with Dr. Hubbard and Dr. Greg at Hubbard Dental in Southern Pines, NC. Through this collaboration, we gained insight into their overall airway and jaw development, allowing us to identify the most suitable palate expander for them. During the airway evaluation, we discovered that their adenoids had regrown following a previous adenoidectomy, with Garrett experiencing significant obstruction as a result. This is why it's important to address function such as mouth breathing and inflammation when going into procedures like tonsillectomies and adenoidectomies! As advised, we revisited the ENT specialist, eventually leading to another adenoidectomy for Garrett. This experience provided valuable lessons on early orthodontic interventions like palate expansion. While functional aspects must be addressed, especially for children with obstructive sleep apnea (OSA), early orthodontic treatment presents an excellent opportunity to structurally enhance and widen the upper and lower jaw, thereby creating a more spacious airway. This gradual process is essential and ideally should commence before the age of 12, when the jaw is still developing, offering numerous advantages. Witnessing their smiles broaden and observing the emergence of spaces between their teeth was a rewarding outcome of this journey.
Let's pause real quick and talk about the central sleep apnea component. Did you know there are two different types of apnea? The most common is OSA, but our sleep study also showed they had central sleep apnea episodes. Central sleep apnea is a neurological condition where your brain isn't giving your body the message to breathe. When we were in our consult with Dr. Hubbard, she stated her concerns and talked to me more about it. Graciously, she reached out to an ENT for recommendations. The ENT said central sleep apnea requires a neurological consult. I was never counseled on central sleep by their primary care provider, let alone told about the need for a neuro evaluation.
Googling central sleep apnea was really scary. And I'm still realizing how much stress that caused me. We finally got into neuro - the sleep neurologist went through their entire sleep study with us in depth. She explained the central sleep apnea episodes are most likely due to the severe restlessness. You could see on the test how the central sleep apnea episodes always coincided with restlessness. That was relieving to hear; however, until we redo the sleep study, the central sleep apnea diagnosis is on hold.
Bare-feet Offers needed sensory input which is necessary to organize the mind and body, while also helping to release fascial tension.
My training in CFT is what taught me to use bare feet daily as a tool for my boys' sleep. You may have heard of "grounding" and might be thinking, "seriously, another person talking about bare feet," but I don't do things I don't believe in, so hopefully, I can explain the importance. It actually evolved a little bit - first using bare feet to specifically address the fascia restraints in their bodies. There is a layer under our skin called the superficial fascia layer which connects our entire body. If you remember, I mentioned their intrauterine constraint and oral facial asymmetries - using bare feet on grass, dirt, pine straw, sand , ect can begin an opening up process in our fascia. It's amazing how our entire body is connected; as we kept up with 10 minutes a day, I saw the difference in their body posture as they walked after just a few days of doing it. I also looked back at their sensory journey - NICU, preterm, foster care... we all can respond to sensory processing in different ways - some who have this background can shut down to sensations like touch, smell, sounds... others start to really seek it. We all know how much information/sensation our feet provide our body and subsequently our mind. We can use bare feet to provide our body with an appropriate amount of information during the day, which can help our body organize and then sleep more soundly. Without appropriate sensory processing (like having feet stuck in shoes all day), we have the potential for our bodies to be more restless, which can carry over to our sleep.
Body work. Often a necessary tool when asymmetries in structure and movement are present. Benefits the nervous system thru using sensory input with hands on techniques.
Bodywork is a broad concept - it can mean massage, chiropractic, CST, CFT, Rolfing... I knew I wanted to incorporate bodywork into their journey. Addressing fascia, muscle tension, and having a positive impact on the nervous system, I personally think we need to start thinking of bodywork as a therapy and not a luxury in our culture. For maintenance, we will continue to use a variety of chiropractic and massage modalities to improve our boys' sleep outcomes.
How we breathe and sleep determines how we interact with the world, how we respond, and engage in activities during the day. The reverse is also true. Our activity level and engagement during the day also determine how we sleep and breathe. So where do we start? It seems overwhelming when we consider how everything is connected, but one thing I knew, treating sleep like an isolated event wouldn't fix my children's functional breathing and sleeping issues. So I thought about immediate lifestyle modifications during the day, I reflected on their story and realized I'm going to need additional resources and professionals I can trust and believe in to get my boys on the right track. I also know fixing function is never an easy fix, it's a well worth journey, however.
Thank you for reading our on going journey- Part 2 you will see more resources and concepts we are addressing for their sleep apnea.
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