Because Jonah's medical stuff can get confusing, I will try to summarize what our plan is for treating his severe sleep apnea.
In January 2024, Jonah's sleep study showed severe sleep apnea because he stopped breathing 32 times per hour. His prior 2 sleep studies showed mild to no sleep apnea.
First, Sleep Apnea Guidelines Adults vs Children:
From John Hopkins Medicine: In adults, Severe obstructive sleep apnea means that your AHI is greater than 30. You have more than 30 episodes per hour. Moderate obstructive sleep apnea means that your AHI is between 15 and 30. Mild obstructive sleep apnea means that your AHI is between 5 and 15. Normal sleep means that your AHI is less than five.
From NCBI Website: In pediatric obstructive sleep apnea...An AHI score of 1 to 4.9 events/hour is mild OSA, 5 to 9.9 events/hour is moderate, and more than 9 events/hour is severe
Second, why is it so important to treat severe sleep apnea in a child with Down syndrome?
In general, for all people whether they have DS or not:
Obstructive sleep apnea is a prevalent condition wherein the upper airway becomes blocked repeatedly during sleep, leading to disrupted airflow due to muscle relaxation around the tongue and throat. This condition affects over 18 million individuals, amplifying the likelihood of heart attack, stroke, high blood pressure and related complications.
Taken from Tampa General Hospital article linked below.
Specifically for children and adults with DS:
If the individual is a child, they might:
- Have tantrums.
- Be less willing to use words to communicate.
- Have trouble learning new skills.
An adult may:
- Refuse to participate in normal activities.
- Be less willing to engage in conversations.
- Forget parts of their usual routine.
- Have difficulty following directions.
- Taken from NDSS article linked below
Third, what have we done so far to treat Jonah's severe sleep apnea?
1. Removal of tonsils. This was actually done for two reasons: 1) constant strep throat 2) very enlarged tonsils which can be A FACTOR (not generally the sole cause) in severe sleep apnea.
2. After Jonah's tonsils were removed, another sleep study was done. While he is still considered to have severe sleep apnea, he went from 32 events per hour to 19 events per hour. So removing the tonsils definitely helped but didn't stop the sleep apnea.
3. During Jonah's tonsil surgery, the ENT Dr discovered that Jonah has choanal atresia which is a bone blocking his right nasal passage. Since this can affect his ability to breath properly both while awake and asleep, the next step was to make a opening thru this bone blockage. This repair surgery was done yesterday.
4. After Jonah recovers from this surgery, he will have another sleep study to see if this opened airway makes any improvement in his sleep apnea scores. Doctor is thinking there will be some improvement from the score of 19, but it doesn't seem like he is confident Jonah will move out of the severe apnea range even with this repair surgery.
Fourth, what happens if Jonah's sleep apnea score continues be to 10 or above?
1. Besides enlarged tonsils and this blocked airway, the biggest contributor to Jonah's sleep apnea is that his tongue flops back and blocks his airway. This is why sleep apnea is very common in people with DS because of larger tongue and floppier muscles.
2. A CPAP device can prevent the tongue from flopping backwards. However, the doctor doesn't think this is a good option for Jonah because:
a. The amount of air flow needed to prevent severe apnea would have to be very high and could be very uncomfortable/intense to deal with.
b. CPAP devices are not easy to deal with for anyone, but especially for an individual with DS who may have sensory issues and then also not be able to cognitively understand why he is being subjected to this.
3. That is why the ENT doctor thinks Jonah would be a great candidate for a new treatment available to kiddos over age 13 with DS: the Inspire implant currently being offered to the general adult population.
4. So while this idea is way down the road and only a possibility if Jonah's next sleep study continues to show severe sleep apnea, this is option is part of the plan going forward.
No comments:
Post a Comment