Monday, June 1, 2009

ENT Appointment - Surgery?

So here's an interesting fact that I learned today: the adenoid, once surgically removed, CAN grow back in some cases. Tonsils don't grow back when surgically removed. We had an appointment with Matthew's new ENT (Ear, Nose, & Throat) doctor today.

Checking Ear Tubes and Tonsils
Bill took the day off work so he could come to the appointment and help hold Matthew down when the doctor checked his ears. I was holding his legs down, Bill was holding his arms down and a nurse was holding Matthew's head in place while the doctor scooped out wax from his left ear. Needless to say, Matthew was very upset about being restrained. Upon inspection under the microscope, the doctor discovered that the ear tube in the left ear had already fallen out so that was scooped out too. There is now a hole in Matthew's eardrum where the tube was set. It may or may not heal on its own but the doctor said that hole will help with drainage and function as if the ear tube was still there. So at the moment, the ear tube does not need to be replaced.

After checking the ears, the doctor checked his tonsils. Yup, they are indeed large. We told him that Matthew snores too. Sometimes, we sometimes hear him gasp for air (sounds like it) over the baby monitor. And when he was younger, he used to wake up in the middle of the night, coughing and congested, but not sick. He'd just have a hard time breathing because of the congestion, yet he did not have a cold. Could he have developed allergies? The doctor explained that it's not usually the case for kids in his age range. Bouts of congestion like that are usually viral-related, he said.

Possible Solution to Breathing Issue - Surgery?
He suggested that a sleep study was an available option for us if we were very worried about Matthew's breathing at night. Possible apnea? At the same time, he advised us that kids Matthew's age usually yank off the wires that they would attach to his body from the apnea monitor. We won't get accurate results, if any, that way. So maybe watching him sleep at home might be better to see if there are any lapses in his breathing.

Because of his occasional breathing issues and large tonsils, Matthew is a candidate for tonsilectomy (surgical removal of tonsils). And because 50% of the time, removing the tonsils isn't enough to clear the airway for kids with Down syndrome, he would need to remove part of the adenoid at the same time. The procedure starts after 45 minutes of being under anesthesia. The surgery is done through the mouth. If we opt for surgery in the next few months, he will need to stay overnight at the hospital after surgery for monitoring since he is under 4 years of age. Throat pain usually lasts 1 to 2 weeks after surgery. We are to expect having a hard time getting Matthew to drink during the recovery period. And no travelling while he is recovering.

According to our ENT, (approx.) 90% of kids without Down syndrome, who undergo this type of surgery, do not experience any recurrence of their breathing issue. But for (approx.) 40%-50% of kids with Down syndrome who undergo this type of surgery, another breathing issue may surface, possibly caused by other factors. (unknown to us at this time. We can't tell what Matthew's future is going to be).

The decision for surgery, even if it is a relatively simple one, is not easy for us. It's still surgery no matter how minor. We're going to bide our time and see how he does over the summer. Maybe we'll even wait until he's 4 years old. In the meantime, we'll continue with our nightly routine of warm baths in a steamed-up bathroom, saline solution and using a bulb to clear his nose, and a cool mist humidifier in his room at night. We'll see this ENT doctor again for a follow-up visit in approximately six months. We liked how he answered our questions and provided possible courses of action. We also noticed that whenever he said "normal children", he immediately corrected himself saying, "children without Down syndrome" and then finishes his sentence. Hey, at least he's trying to be sensitive about his choice of words.

Bill and I are now wondering about experiences of other parents who have opted for this type of surgery for their kids, with or without Down syndrome. Also, we are wondering if there are older kids/ adults that have not had their tonsils and/or adenoid removed. Do they or their parents wish they opted for surgery earlier or maybe even regret it?


Mommy to those Special Ks said...

OK here we go! LOL First, even though it's EXTREMELY rare, tonsils CAN grow back... one of my dad's did. His doctor said it was the first time he had EVER seen that happen.

So Kassidy and Kameron (who are typical) both had their tonsils and adenoids out due to constant strep throat. Kameron was 5 and Kassidy was 7. Best decision ever. No more strep! Same day surgery for them... they came home after 2 hours in recovery as soon as they were able to drink. They spent a week out of school and were fine after that.

Kennedy (who has Down syndrome) had hers done when she was just over 2 years old. She had a sleep study done (and did fine with it) and she had severe sleep apnea. Her tonsils were huge... "kissing" they called them. She was scheduled to stay overnight in the hospital, (which kids with Ds should stay overnight no matter how old they are because of their floppy airway, they need to be monitored) however, Kennedy refused to eat or drink ANYTHING for 6 days so we camped out in the hospital that long until she did! She had a follow up sleep study 6 months later which still showed mild sleep apnea but MUCH improved from before.

We actually just got back from seeing a sleep specialist doctor today (I think she's actually a neurologist, maybe?) Anyway, Kennedy's going in for another sleep study in July because she has become a crazy sleeper again and her snoring is back... IF her apnea is back we will be trying something else which is just crazy and would take up 10 more paragraphs and I feel like I've rambled enough! LOL So, I hope this helped! :)

Beverly said...

Noah had huge tonsils as well. He has always since birth had sleep issues. He had T&A done when he was 3 1/2 and a sleep study done a month before surgery. He still has sleep apnea and we go about twice a year for a sleep study. He gets better with each one and no more screaming like he is being killed. So, for now we keep searching for answers for his lack of sleep. We give him 2 sprays of Melatonin a night that is slow release form. It knocks him out, with out it he would be awake in bed for hours and hours.

heather said...

Morgan had a T&A and tubes when she was almost 2 years old. We did the sleep study when she was 1 and it showed mild sleep apnea. We repeated it 6 months later and she still had some apnea so we decided to give her every option for the biggest airway possible for her and had the surgery. We did a repeat sleep study a few months later and she still had mild apnea but her numbers were better and her oxygen saturations never dropped below 90% (right where they should be). I am glad we did the surgery. She had a rough recovery though. She was pretty miserable for about 10 days. I think she was pretty dehydrated and if I could do it again I would have taken her in for some iv fluids. I think that would have helped her recovery. The T&A helps for sleep apnea but because of low muscle tone sometimes the sleep apnea is due to a floppy airway and not tonsils. If this is the case than the child uses cpap at night to help keep the airway open. From what I understand (from Morgan's sleep doctor) the damage that prolonged sleep apnea causes is pulmonary hypertension that is irreversible. Morgan definitely did NOT enjoy the sleep studies and cried and cried before falling asleep so I felt the results were skewed because she cried so much she could barely breathe from all the congestion. She didn't pull out the wires though because they put arm restraints on her so she couldn't bend her arms to reach the wires. If you are mostly concerned about his oxygen levels (the sleep study shows much more--restless sleep movements, stages of sleep, carbon dioxide levels, brain activity, and oxygen levels) I would request an overnight oxygen saturation test. You do it at your home and just have to keep a probe on his foot. They come and pick up the oxygen monitor and print out the data and can let you know if his levels are dropping lower than 90%. I think this is the most reliable because it is the same setting as where he actually sleeps. Who can get a restful nights sleep in a hospital?

Ria said...

Mommy to those Special Ks,
You're right, for kids with DS an overnight stay is necessary for monitoring. Thanks for the correction. :-)

I had not heard of melatonin sprays before. That's very interesting. Something for us to keep in mind. Thanks!

We appreciate your suggestion to try an overnight oxygen saturation test. We'll be looking into that.

Thank you all for sharing your experiences. It is very helpful to know what we may expect should we proceed with T&A surgery, whether it be in the next few months or year. It also seems like it would help for us to consult a sleep specialist doctor. Meanwhile, this post is still open for more comments. :-)

Maggie Mae said...

Ria - I have identical twin sons with DS and they just underwent partial tonsillectomies/adenoidectomies for sleep apnea. I blogged about it a lot when I was going through it so here are some not live links ('cause I don't know how to put live links in) to my posts:

( and ( and ( and (

For us, it was a great decision despite the post-surgery issues we had. They didn't have the surgery for illness reasons though they had colds ALL the time (b/c of lack of sleep, their bodies couldn't fight them off well). Now, the boys haven't been sick at all for 2 months (has never happened before) and have been sleeping through the night with very little restlessness and almost stop breathing events (occasionally Mikey will have a quickie at the start of the night). When the MD said "you'll be amazed at the outcome"... he wasn't kidding! The boys are well rested, in better health and attending and talking more and better!

datri said...

I know our ENT wants to wait on doing Kayla's T & A. She did have a sleep study done (the tech wrote on the report "patient was angry and uncooperative", LOL) and it showed mild sleep apnea. The ENT didn't feel it was worth the risk of surgery at this time. Meanwhile, Kayla has a horrible sleep schedule. Last night she was up from 2 - 4AM. I used melatonin (we use the tablets, I just crush one up and put it in her rice milk) to get her to sleep, but it only helps her get to sleep, it doesn't keep her from waking. And if she wakes in the middle of the night for some reason melatonin doesn't help her get back to sleep.

ENT doctor said...

I have no idea about this matter.I think that kinds of tonsil problem is very complicated.