Children with Down syndrome are generally born with a smaller oral cavity. Even with a “normal” sized tongue and tonsils (as opposed to enlarged), things can get pretty crowded in there. Often, this is why you might see a protruding tongue on a child with Down syndrome. With all that going on in such a small space, children with DS frequently suffer from obstructive sleep apnea (OSA). That is, their tonsils and adenoids get in the way of breathing especially at night when the prone sleep position causes the tongue to relax and drop back into the throat… Further blocking their small airway. OSA is often marked by stop breathing episodes, followed by deep sucking in of the abdomen and gasping for air, as well as snoring… all potentially resulting in a decreased oxygen supply to the body and brain. And, restless, low-air-exchange sleep means less REM sleep. Less REM sleep equals a greater feeling of fatigue for the sufferer. And, that leads to more and longer illnesses and school absences. Sleep Apnea is also often associated with difficulty focusing and/or attending to task as well as cognitive sluggishness and, in children, has been potentially linked to seizures.
This pretty much describes Brian and Michael. However, it is important to note that they don’t do the strep thing so much though they are generally sick 3 weeks out of a month. For Brian, a cold turns into a bleeding sinus infection. And, Michael generally develops an upper respiratory infection.
While I’ve mentioned a lot of this in a previous post, I wanted to expound upon the whole tonsillectomy/adenoidectomy for children with Down syndrome issue as I go through it with Brian and Michael. I finally found and visited a Pediatric ENT — Dr. Mendhelson — who has experience specifically with children with Down syndrome — a very important qualification — and who accepts our insurance (no small feat). The good doctor confirmed that their tonsils are unusually large (the tonsils and uvula form a bridge across the entire back top of the throat). He then used a scope on the boys to take a look at their adenoids. He was shocked at that Brian and Michael have nearly normal sized adenoids… only very mildly enlarged…. commenting that he’d never seen this combination of enlarged tonsils but “normal” sized adenoids in all his years of practice. The fact that the boys don’t suffer from strep throat is an indication that their tonsils are still filtering germs as they should. And, their near-normal-sized adenoids don’t present any airway blockage problems. Taking into consideration the potential structural differences of the throat of a child with Down syndrome — the tonsils and adenoids sometimes act as sort of retaining walls for the soft palate which, upon removal, can collapse (so I’ve heard). Though this is rare, as a result, I’ve been told that tonsillectomy/adenoidectomy surgery for children with Down syndrome is performed slightly differently. Instead of removing the entire tonsil and/or adenoid, only a partial removal is done to maintain the structural integrity of the throat. Otherwise, reconstructive surgery is sometimes needed.
Interestingly, my boys are not going through the full or even partial removal surgery. Instead, because their adenoids are not obstructing the airway and because their tonsils are still working as they should… BUT, because their enlarged tonsils are significantly blocking the airway, Dr. Mendhelson has chosen to perform an intracapsular tonsillectomy/adenoidectomy. That is, as I understand it, the surgery will scrape part of the tonsil away, as well as any protruding bumps on the adenoids, to enlarge the airway space and relieve the obstruction. This procedure is said to be 90% less painful, less bleeding, less chance of post-surgical complications and the recovery is estimated to be 80% faster/easier for the child.
Mind you, none of these surgeries are without potential complications or issues. The possibility of tonsils or adenoids growing back exists. With surgery, there is always a danger when putting a child under with anaesthesia. And, the anaesthesia dosage must be carefully selected and monitored as, frequently, a child with Down syndrome has a slower metabolism and will take significantly longer to “wake up” from a “normal” dosage of anaesthesia. (This happened to Brian and Michael before and it was VERY scary.) Additionally, post-surgical complications include bleeding and potential structural collapse of the soft palate (as previously mentioned) requiring reconstructive surgical follow-up. Still…
I’m going to go forward with the surgery — we’re scheduled for the end of March — in the hopes that improving their sleep will improve their health which will improve their performance in all or some areas. I’ve been assured that my first two goals are in the bag. If we achieve ANY of these outcomes, I will consider it a huge success.
Have any personal experience on this topic? I’d love to prepare myself with as much info as possible prior to the surgery. Thanks, in advance, for sharing.