All About My Son’s Chronic Ear Struggles

My son has had chronic ear infections since he was 12 months old. Although, for most of the time, I didn’t know. He didn’t communicate it. He showed no signs. He never pulled on his ears. He never had a fever or a cold with them.

He was showing us in other ways we just didn’t see it. Ways that are almost impossible to detect in a nonverbal child who may or may not have autism.

I am still angry to this day that his pediatrician never figured it out. After all was said and done and we found out that he did indeed have chronic ear infections I gave her a call and asked her to look at his chart history. She told me, and I quote, ‘his ears were red and inflammed at every visit but I always just assumed it was because he was screaming so loud.’

His autism overshadowed his ear infections. And that’s not right.

We also learned after many long years that antibotics don’t won’t for Cooper. Not drops. Not oral. The medicine seems to tame the pain a bit and slow his behaviors but never remove the infection.

Cooper has learned to live with chronic ear pain. And that’s not right either.

His first tube surgery was the worst. We lived in rural Minnesota and I think we had the first kid with challenging behaviors. The nurses and staff didn’t know how to handle Cooper. He was two years old and they were baffled that he wouldn’t sit calmly. They were frustrated that he wouldn’t willingly take medication. They didn’t understand why he was resistant. At one point a nurse yelled (yes, yelled) at Cooper saying, ‘you don’t touch the nurses.’ I remember thinking…this is odd. This isn’t right.

But nevertheless we obviously went through with the surgery.

Immediately when it was over an audiologist came in our room and told us that Cooper was moderately deaf in both ears. She said that he needed hearing aides immeditaly. She said he would start talking once we got him hearing.

It was rough. That was the first time I had cried over something medically with my son.

I couldn’t believe that my son would need to wear hearing aides for the rest of his life. And, more importantly, I couldn’t figure out how I was going to get my sensory wild child to wear hearing aides.

It was not a good day or month to follow.

I knew my kid wasn’t deaf. Not even a little.

And for the first time I had to be a parent advocate. After phone calls, emailing, researching, and talking to other parents I finally convinced the school’s audiologist to perform a hearing test.

Halfway through she walked into the booth and hugged me and told me he wasn’t deaf. And more importantly, I wasn’t crazy.

I remember driving home with this feeling of victory. And then fear. If it wasn’t a hearing loss, what was it?

Fast forward over the next five years, Cooper had four additional sets of tubes placed in his ears. And then his adenoids removed. All of the surgeries were tough. We learned a lot though. We learned Cooper’s limits. We learned to advocate and tell the nurses and doctors what works and doesn’t work.

We learned that Versed, a calming medication often given to children before anesthesia, makes my son crazy. We learned IV’s are bad. We learned that he can get a whole unit to their feet when waking up from anesthesia.

We learned how blessed we are to walk out of that hospital with a healthy child. Because not every parent does.

We learned how high our son’s pain tolerance actually was. He’s a superhero.

We learned that when he is covering his ears, or laying his ear on the ground, it’s most likely to stop the wooshing sound. Our son lives under water.

We also eventually learned that dairy can attribute to chronic ear infections. This made total sense because our child lived on dairy.

Once we removed that, after the fifth set of tubes and removal of his adenoids, his ear infections stopped for six months. This was the exact same time that Cooper started sleeping through the night. He started communicating and joining the world.

If you look back on my videos you will hear me say, ‘my son has come alive.’ You will also hear me say, ‘I am so afraid to lose him again.’

And with each ear infection after that we did lose him a bit. He would regress, start ramping up his behaviors, stop sleeping and ultimately change.

Doctors think I am overreacting. I am not. I am watching my son disappear before my eyes. He loses skills. He stops what few verbalizations he has. It’s scary. It’s gut wrenching.

And to make it all worse, I know that my son has lived the majority of his life in pain.

Cooper’s last set of tubes was placed in December, just a few months ago. He has had two infections since then. We’ve visited the doctor three times.

I don’t know if I’ve ever had a healthy son. I don’t know if he’s ever been pain free. I feel so badly that I don’t know the answer to those questions.

So, you can imagine my panic when Cooper woke up a few nights ago and came in my bed. He NEVER does that. He was calmer than usual yesterday morning. He was quiet and oddly compliant to requests. I knew what was coming. Ear drainage.

His therapist let me know that he was acting ‘off.’ And that he was asking for ‘help.’ Which he eventually asked me when I got home from work.

Nonverbal autism makes fixing this so much harder. He struggles to communicate pain and location on his body. And we typically don’t find out he is in pain until it’s really bad. He suffers in silence. Then the behaviors ramp up. Then he stops sleeping. Boom. Burst eardrum.

Knowing he is in pain kills me. We are going back to the specialist Monday morning and asking about infection in his sinus cavity and in two weeks are we are meeting with an Immunologist to see if he has an underlying auto immune disorder.

I’m also going to purchase this Otoscope for peace of mind. I need to know if his ears are healthy or causing him pain. As his mom, I need to know. I am his voice.

 

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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  • Joanna

    February 9, 2018 at 10:24 pm
    Reply

    Ug. That is so hard. I'm so sorry he has gone through this and that you have too. I hope you get some answer soon. […] Read MoreUg. That is so hard. I'm so sorry he has gone through this and that you have too. I hope you get some answer soon. I am so mad at your pediatrician. Have they ever tested the drainage or swabbed during surgery? Could it be fungal? Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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