Allergies, Sleep Apnea and Developmental Delay

My son with autism had ears, nose and throat issues since birth. At age 9 months, he starting having sleep apnea and trouble breathing through his nose. He also suffered from environmental and food allergies. After numerous referrals to specialists, we finally succeeded in getting him into a sleep study at age 16 months and found that he suffered from severe sleep apnea. This caused hypoxia, which is a lack of oxygen to the brain. We had his adenoids and tonsils removed at age 2 yrs. 10 months. Doctors wanted us to wait until he was closer to age three due to the seriousness of the surgery, but did that waiting contribute to his developmental delay?

My son’s speech was affected phonetically by his enlarged adenoids and tonsils.  He received speech therapy at age three, to help him in that area. By age four, we noticed his development had caught up but then seemed to have stopped somewhere along the line.  That was when we had him assessed and received his diagnosis of high functioning autism.

Then around age five, someone suggested to me that I should have his hearing tested by an audiologist in a booth. I requested a referral to

(Ears, Nose, & Throat doctor or ENT) and had his ears assessed. They also gave him a booth hearing test and found a hearing loss in both ears, plus his ear drums were not functioning properly. Hmmmm. See, the adenoids and Eustachian tubes are connected. Since he had a tremendous amount of mucus and fluid in his nose, it made sense that his ears were also affected. So it turns out that his critical years of speech development were affected by hypoxia (lack of oxygen to the brain) and hearing impairment because the tubes in his ears were filled with fluid and not draining. The odd (or lucky) thing about it was that he didn’t suffer from chronic ear infections. He had maybe one or two his entire life.

So on the advice of our doctor, we had PE (pressure equalization) tubes surgically placed in his ears. This surgery went smooth, had no pain, and he woke up with a smile. He could hear better and his speech improved. He now at this point had no longer struggled with phonetics, only receptive and expressive speech.  But those areas improved greatly and his ears didn’t bother him much anymore. He had auditory defensiveness before the ear tubes, but that seemed to dissipate once he had the tubes.  The tubes were supposed to fall out within a year. But they lasted over 18 months.

His auditory defensiveness came back periodically after his tubes fell out the first time. It will be interesting to see if it completely goes away now that he has new tubes in place.

Two years later, and another change in insurance providers had us starting all over again with a new otolaryngologist. My son’s ears were itching him terribly on the inside and his hearing was compromised again. He felt like his ears were full. Once the ENT got the large amount of wax out, he could see that both tubes fell out and the ear drum healed nicely. Well, he needed tubes again! His hearing was compromised, again, and the ear drum wasn’t functioning properly, again.

Today, we had another surgical procedure for tubes placed in my son’s ears. This time we opted for the permanent tubes, since he’s 7 1/2 and should have grown out of this problem by now. Approximately 15% of kids need tubes much longer and I just don’t want my son to go through numerous surgeries for placement of them. He will have to endure one more surgery to have these tubes removed in about 3 years.

The surgery went well today, but not without pain in recovery. Then the surgeon drops a bomb on me that his eardrums are calcifying. Huh? What’s that? He states it’s probably from his multiple ear infections in early childhood. No, he didn’t have them. Really?! (I guess a doctor should be thrown a curve ball like that after scaring the living hell out of a mother!) No further explanation given, other than his comments that he may need his eardrums replaced someday. WHAT?!!? He calmly tells me he does it all the time. Well, let me catch my breath doctor. Believe me, I will have done my research and come to our follow-up appointment with A LOT of questions. Be prepared doc!

It’s scary how doctors are so limited in their fields of practice that they lose sight of the whole patient. Medicine has become so specialized that you need an army of practitioners to properly diagnose and treat your child. My discussion with the anesthesiologist left me wondering how much research they do after they get their license.  I told him I did not want nitrous oxide used on my son to relax him for surgery. He said “It’s done all the time, and I’m sure he had it in his past surgeries”.  Once I explained that since then we have had laboratory testing confirm he has mitochondrial dysfunction and that people with this should not have nitrous oxide. No comment; just a blank stare. Not sure if he was amazed at my ability to pronounce such a “big medical term” or that I knew something he didn’t. My husband told me that these doctors are used to parents just sitting there, nodding, not asking many questions. I’m not that parent.

My son with autism definitely has biochemical pathways that are dysfunctional in his body, but were they turned off by environmental toxins, lack of oxygen to the brain or both?  I wish I knew then what I know now, and perhaps could have avoided some of the problems that resulted in his developmental delay. But that wouldn’t change the fact that he is still a bright, intelligent, sweet, loving little boy who is working hard at overcoming the obstacles thrown at him in life. And I’m damn proud of him!

If your child suffers from allergies that result in improper draining of fluid in their Eustachian tubes or chronic congestion from cold viruses, look to a knowledgeable ENT. Get their hearing tested in a booth. Consider the tubes. I’m left wondering what if they had found this at age 2 and had tubes put in when they removed his adenoids and tonsils? Would he had developed calcification on his eardrums? Don’t get plagued by the “coulda, woulda, shouldas”.

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