Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, January 08, 2012

Asher: ENT visit and your thoughts

 Our pediatrician switched clinics, and her new place is affiliated with the University of Minnesota system. That means if one of the kids sees a specialist in that system, our regular ped. can access the reports right away without having to wait until they're forwarded to her. Our International Adoption Clinic - which I LOVE - is also part of this system, so I decided to have Asher see specialists who are all affiliated with the same system.

Our first specialist on our list this month is the ENT. He's brand new to us, but well-known in the area because he's who everyone goes to for cochlear implants. He knows his stuff. Too bad those smarts don't come with a great bedside manner.

Just as most people are, this Dr. was a little surprised to see this tiny little guy sitting in his chair, then see a chart that says he's 7 years old.

So first I told him why we're there. Asher's tonsils are huge, he can't swallow anything more than applesauce consistency because they're so huge and he thrashes and gasps all night in his sleep so I'd be shocked if he didn't have obstructive sleep apnea. Also I want an ABR done at the time of surgery. I think his  hearing is fine, but as long as he's going to be under anesthesia it's a good time to have the test done.

On with the exam.....

The doctor looks in Asher's mouth and says, "Yep, those need to come out as soon as possible and we'll do adenoids too. And, just so you know, although his ears look clear now,  if I find fluid in his ears at the time of surgery I'd like to put tubes in. And do you want  his tongue reduced at the same time?"


"His tongue? No."

Tongue reduction surgery was a hot topic several years ago when people were doing cosmetic surgery on their kids with Down syndrome to eliminate the facial features that identify our kids as "different". It's highly controversial and....well no...I don't want that done.

"Ok but wait. Tell me why you would want to reduce his tongue."

Asher has Macroglossia from years of sucking on his tongue when it was his only form of stimulation. His baby teeth sit at a funny angle, at the very front of his gums (so you actually see MUCh more off the tooth root that you normally would.) This is from his tongue constantly laying over his teeth, pushing them forward. Since coming home he's had three adult teeth start to erupt, and they're at the back of his gums where they're supposed to be. However, they will eventually move forward from the same tongue pressure.

Then he went on to explain to me what will happen to his jaw as he goes through the next two growth spurts of the mandible.

"Yes, but you see? I've taught him to respond to a prompt to close his mouth. We prompt him about a million times a day so eventually it should just become habit."

So he had me tell Asher to close his mouth, and the doctor very carefully moved Asher's lower lip. There was his tongue...out past his teeth. This picture is pretty classic. His lips are most often pursed when closed because it's hard to close them over his tongue.

"Well, but you should have seen how big his tongue was a month ago. It's shrunken significantly since then."

The doctor explained to me that it won't shrink much more than it already is, and why.

"But won't he have more room for his tongue once those giant tonsils are out?"

Possibly, but not enough to compensate for his tongue.

From there we went to have a booth hearing test done. I'm very well versed in these. Not only worked with them for years, but Angela has a moderate bilateral hearing loss and wears hearing aids. I knew they wouldn't be able to train Asher for the booth today. But they could do an OAE which is a good screening tool.

Asher did not pass the OAE in EITHER ear!!! I was completely caught off guard by this. His ear canals were perfectly clear, his tympanograms (measures the movement of the ear drum) were fine, so it's unlikely he has fluid in his ears. Again, this is just a screening tool so now I'm very interested in the results of the ABR when we finally get it done.

Then we went back to meet with the doctor again to go over the hearing test. Not surprisingly we weren't able to get any kind of results with the tone testing, but he did say the fact the OAE measured poorly in each ear is a pretty good indicator that we'll find some level of hearing loss with the ABR. This is when the doctor asked me if we also wanted to do a gtube.

Umm...NO again!

And yes, I'm well versed in gtubes too, since Angela had one until she was four!

"Why would he need a gtube? Yeah, so he only eats mush, which is not super convenient for me, but it's doable. He's gained 7 pounds in the month he's been with us."

He asked how Asher is doing swallowing liquids.

"Umm...terrible. But he's not getting sick and I think it's pointless to do a swallow study until his tonsils are out. I know it's going to take him awhile to figure out what to do with all that space in his throat, but I say lets give him a chance to prove to us he can't do it before we go jumping into a gtube."

No...not even thinking about a gtube right now. Nope.

But that tongue....I don't know ANYONE who's done the tongue reduction surgery, and I know a lot of people! The doctor did say it would not have any affect on his speech (of which Asher has not even one single solitary word right now.) So the biggest effect would be to his teeth and jaw, along with apnea that he said will likely be a problem even with his tonsils out because of his tongue.

Dean and I are at a loss what to do with this information. For now, we're doing nothing until after his tonsils are out and we can see how he does with more space. I know it's an incredibly painful procedure. So, I'd like to hear your thoughts. Help me think this one through.


Amy L said...

Asher sounds very much like my Liam. Liam will be 7 in 5 days and he is currently wearing 3T-4T clothes. He also only eats mashed foods. He has no verbal language either. It will be so rewarding to watch our little guys blossom over time in our families, won't it?:)
That's great that Asher has gained 7 lbs already. I hope Liam will do the same. As for the tongue surgery, I personally would never do that. I would be too afraid that there would be complications and/or lots of pain.....
Now Jimmy had a pallet expander put in when he was 7 years old, and that really helped his speech. He wore it for about a year.

Your granddaughter is in my prayers Leah.

Leah S. said...

Amy, thanks for your response. Angela had a palate expander...for ONE WEEK! Her swallow is just too messed up for her to manage the expander. In that week she lost 5 pounds and aspirated several times. But that only takes care of the palate and doesn't address the lower jaw problems. At this time Asher uses his hand to keep food in his mouth because if he brings his tongue in it's too big to also move it around and move food around. I think we're going to get a second opinion from our regular ENT. I trust him more.

Amy said...

The idea of the tongue reduction leaves me really uncomfortable...I would definitely go for a second opinion. Do you have a T21 clinic in your area? Maybe talking to someone who specializes in our kids would have some good feedback. Another option would be to shoot an email to Dr. Len Leshin at He's usually pretty responsive, has a son w/DS, and knows his stuff. Good luck!

Leah S. said...

To the other Amy: Yes, we have two DS clinics here in the cities. Our developmental ped. is on the committee that writes the health care guidelines for our kids. She hasn't taken new patients in several years, but she emailed me yesterday and said she's willing to take on both Asher and Axel and go over their stuff. I wonder how long it will take to get in to see her. Years ago we'd schedule months out of course! Angela hasn't needed to see her for several years.

Kathy said...

I wish I had some awesome advice for you, but I don't. I am glad that you are at least open minded to the possibility of the surgery, I mean, if he needs it and it helps him... Pain can be managed, and wouldn't it only be temporary pain? I hope you can get into the developmental ped or one of the other specialists affiliated with the ds clinic quickly. Let us know.

Twilson9608 said...

He is soooo adorable.

Difference2This1 said...

Good grief Leah...I thought I had sat through some pretty tough doctor days, but I think I would have developed an ulcer after the day you had there :(

We've been through all the studies, numerous doctors, all the therapies...and not one person has EVER mentioned getting a tongue reduction (I've heard of it, but never even thought to ask anyone if they thought his tongue SIZE was part of his problem).

Gtube?? No one has ever even hinted at a gtube...and Nathan has only just now after 7 months gained as much weight as Asher. And he does that vomiting/reflux stuff.

Our feeding therapist has us now exercising Nathan's tongue. She says we have to strengthen it so he can move the food around more and clear it out of his palate. I hadn't really thought about the tongue being a muscle you could "exercise"...but she showed complete confidence that these exercises will increase his tongue control. So, we all sit around and try to convince Nathan to try to touch his nose with his tongue, lick his upper lip, rub sticky candy on his lips so he will lick them, hold his chin still and encourage him to reach out that long ole' tongue to lick the sucker, etc. I'm sure it's quite a funny sight.

Maybe some tongue exercises might help Asher???? have so much more experience in a lot of this stuff then I, but I couldn't imagine putting Nathen through tongue reduction surgery just to save a sedation until I KNEW the results of the removed tonsils and therapies addresses facial/mouth muscle tone (both our speech and feeding therapies work on that).

I hope you get the direction your need from dr's you feel more confident with....these are difficult things to consider. Yikes!

one_plustwins said...

Leah, here's my thoughts. If he is sucking now, he will likely do so later causing the swelling to return and pattern increase during recovery.

I would not do it, nor would I get a second opinion. Good luck...