Tuesday, January 12, 2010

Ear Tubes Update

It seems that hearing problems are common among kids with Down syndrome according to many articles and books that I have read. The hearing loss, whether slight or severe, usually stems from ear infections, having fluid in the middle ear that does not drain quickly enough (or at all) due to narrower Eustachian tubes compared to the "average" individual. So from the very beginning, we took a very pro-active stance when it came to Matthew's ears. We had many questions. After two successive tympanometry tests, a type of hearing test that measures how sound waves travel through the ear, indicating fluid behind the ears, Matthew underwent a Bilateral Myringotomy with tubes, which is a surgical procedure for ear tubes in both ears, when he was barely 8 months old (June 2008). It was a 10-15 minute surgery and the doctor didn't think we needed to stay in the hospital overnight for observation. Everything went just fine.

We believe the ear tubes really helped Matthew avoid major ear infections as the tubes helped drain fluid from his middle ear. We also attribute his good hearing to having the ear tubes in.

In June 2009, our new Pediatric Otolaryngologist (Ear, Nose & Throat doctor) we went to, removed the left ear tube that was just sitting in Matthew's ear. It had come out of the eardrum on its own - part of the natural progression of things with ear tubes. In December 2009, the right ear tube was removed. It too had dislodged itself from the eardrum.

The Not-so-good news and the Good News
As of December 2009, the hole where the left ear tube had been was completely healed. The right one had just fallen out so the hole was still in the process of healing. The not-so-good news is that the doctor saw a scab or some skin in the area that might potentially hinder the healing process in the right ear. We're going to have it checked in June this year. If there is skin in the way at his next appointment, then he will need to undergo a minor surgical procedure to remove it. We're hoping that he won't need surgery.

The good news is that the doctor doesn't think Matthew needs another set of ear tubes (right now anyway) because there is no fluid in his ears. The doctor said, "His ears look great!"

Update on Sleep Apnea Concern
Adenoidectomy (surgical procedure to remove the adenoid) and Tonsillectomy (surgical procedure to remove the tonsils) had been discussed at past Otolaryngologist appointments. We were (and still are) concerned about sleep apnea. However, we're not as concerned about it anymore since Matthew's good nights far outweigh bad nights, where he'd wake up coughing and sounding very congested. He also has bad night wakings due to congestion when he has a cold, which is expected for any child.

One of the pros of these procedures is that he'll breathe easier. One of the cons of these procedures is that it could undermine the structure of his nasal passage. After weighing the pros and cons of adenoidectomy and tonsillectomy, our decision is to have surgery only when it is necessary. Our doctor concurs that it is not necessary right now, even if Matthew's tonsils are on the large side of the scale. He suggested a sleep study when Matthew is 4 years old. So we will do that and continue getting his ears checked twice a year.

The only thing I dread right now when going to see the Otolaryngologist is having to hold Matthew down on the examining chair/ table while the doctor looks into his ears with the special magnifying lens and special instruments designed for very small ears. It took three people to hold Matthew steady - a nurse held his head, Bill pinned his arms and I pinned his legs down. Matthew cried so hard that it seems he burst several capillaries around his eyes. It's very faint in this picture but he looks like he has freckles around his eyes.
see the freckles?
If this is the only price to pay for making sure his ears are in good shape, then we will endure it no matter how it breaks my heart to hear him cry and struggle through it.

Related posts:
A New Pediatric ENT
ENT Appointment - Surgery?


burn666 said...

Just wanted to say - you guys are awesome parents! Keep up the good work! :)

Debbie said...

we haven't done anything in the ear/hearing dept. yet....but since he had cataracht surgery when he was 2 yrs. old. and it took three or four of us to hold him down so the Opthamologist could look in his eyes. He'd squeeze them so tight that he would have to use the thing to pry them open. Well, he remembers that and to this day, he is NOT good at the eye dr. or the pediatrician or the dentist. Screams and hollers like something terrible and takes several of us to hold him still. It's NOT very fun, so I totally understand and sympathize with you!!!

To Love Endlessly said...

interesting @ the slep apnea. I have been concerned @ Marissa's sleep habits. Looks like I should do some more research, but it could just be the season too.

and I have to say I think you are both great parents too! Matthew is so lucky to have you and you're lucky to have him.

Violette's Mom said...

Violette has always HATED getting her ears checked - It was like torture.

I want to give you some hope, though. At the beginning of the year she had her ENT apt, and she fought it. Then about a week later we went to the ped. He told her he was going to look in her ears, and he needed her to turn her head. She didn't struggle or fight at all - turned her head to the left, and he looked, and turned her head to the right, and he looked. I couldn't believe it! So maybe he will outgrow that fear too! (this was at 2.5 years...I'm still shocked!

Jen said...

My 17 month old just had a partial tonsillectomy and removal of his adenoids and it was the best decision we ever made. His sleep problems are non existent. It's a tough decision, but know that Matthew will do great when the time comes. I am amazed at the difference.

MaggieMae said...

Poor Matthew. For our experience on the sleep apnea/tosillectomy-adenoidectomy thing. Check the link below. Note: doesn't have to be full removal so you don't tax the existing throat and nasal structures. It's what we did and the "could grow back" fear is more myth than reality. Our ENT has NEVER seen that happen in 15 years of practice.