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Post by laurasnowbird on Aug 12, 2004 8:34:10 GMT -5
Bah! Surgery, yuck! Okay, can you tell I'm not in the world's best mood, guys? Ethan had tubes put in last September, and I noticed bloody discharge from his ear the day before yesterday. Quite a bit of it in fact. I was a little distressed (to say the least) and called the ENT, who we had been to see for our regular check-up only two weeks before. He was of course in surgery, and has no one on call, so I took Ethan to his pediatrician. She looked in his ears, said the infection was in the ear canal, gave me drops and sent us home. HOWEVER, he has also been not eating well the past couple of weeks, not talking as much, and for the last five days been SCREAMING when I put him in the car. This child LOVES to ride in the car, and he's okay when I put him in the seat, but the minute the car starts moving, he starts shrieking like he's in pain, and clutching the sides of his car seat like he thinks he is falling. As a new walker, he's still a little unsteady of course, but he keeps toppling over to the left, always to the left. And it is the left ear that was draining. I told the pediatrician all of this, and she said there was no fluid behind his ear, so she didn't know why he would be doing that. What the heck? So, being the pain in the butt that I am, I called his ENT's office as I left the ped's office, and told them I wanted him seen when his office opened the next morning, something is just not right. The ENT saw him yesterday morning, and said he can't even see in there because there's so much discharge, can't even begin to guess if there is fluid in there, but based on the other things that I described, he thinks there is real reason for concern. (I'm not sure what the pediatrician thinks she could see, DUH!) He didn't want to mess around with it (Gotta love that guy!) so he scheduled Ethan for next day surgery. Soooo, he's going in at 12:45 today. Wish us luck. Laura
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Post by lea on Aug 12, 2004 9:22:36 GMT -5
hi laura, my name is valerie and i just joind uno mas yesterday. i have a 2 1/2 y/o with ds. my dtr has fluid in her rt ear. her ped. doen't want to put tubes in her ear yet, because he feels her number of ear infections are in the normal range and there can be alot of problems with the tubes in kids with ds. i wanted a 2ed opinion so we took courtney to a ENT. he recommended tubes. so we don't know what to do at this point. i'm sorry to hear about ethan. i hope things get better for you both. good luck today! let me know how this turn out valerie
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Post by Betty & Ian's Mom on Aug 12, 2004 9:26:27 GMT -5
Will be praying for Ethan and hope all goes well today, I'm sure he'll be just fine afterwards !!!
I wish I could understand your emotions on this one, Betty has had only one ear infection in her 21 months of life and perfect hearing as well (knock on wood).
Discharge from the ear, fluid, etc..., can cause your equilibrium can be thrown off. Ear problems can cause this.
Lea, Welcome to Uno Land !!! I found Uno 3 months ago and find everyone very nice and the advice and all are what I come back for !!!
Lea~ I would get a 2nd opinion from another ENT before you make the decision for tubes. How many ear infections has she had, if you don't mind my asking???
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Post by momofrussell on Aug 12, 2004 10:06:15 GMT -5
Prayers for Ethan!!!! I hope all goes well, poor guy!!! Sounds like his equilibrium is a bit off.
Valerie, hmm with two different answers from 2 docs, I think a third one would be a good idea. How many has your daughter had?
Russell has only had, uh, I think 2 or 3 in his whole 6 yrs.. KNOCK ON WOOD! He is one of the few that don't have tubes in his ears, so I don't know much about it actually.
Good luck to all!
a.
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Post by meghans_mom on Aug 12, 2004 10:08:58 GMT -5
Laura - good luck to Ethan today w/ his ear surgery....will be thinking of you guys and adding you all to my prayers! Hope all goes well and your little guy is feeling better soon! He's a lucky little guy to have a great mom like you! laurie
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Post by lea on Aug 12, 2004 13:00:09 GMT -5
Thanks everyone for your replies. Courtney's frist year she didnot have any ear infections When she turned 14 months we joined a mommy and me class at o2b kids. For the frist 6 or 7 months she was fine. Then it was one cold with ear infection after another, About 5, also a very bad case of stomach flu. We stopped going to o2b kids. I gave the classes a break for a few months and joined my gym. We go there 2 days a week. So far so good, she hasn' had and ear infection for approx 3 months. Next week Courtney has an appointment at Hope haven in Jacksonville Fl. It's a down syndrome center. I will ask their opinion. Sometimes it's hard to know the right choice to make. Valerie
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Post by Sherri on Aug 12, 2004 13:43:57 GMT -5
Laura,
Just wanted to say I hope & pray all goes well with Ethan's surgery. Please keep us posted when you get a chance.
Get well soon sweetie!!
((Hugs)) Sherri
Ps: I can so relate to having surgery done on ears. We're having some problems with infection at the incision area where they took skin for the graft on Jared's right ear drum. Geez......it's been almost 2 months now.
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Post by Chris on Aug 12, 2004 15:40:13 GMT -5
My prayers are with Ethan. Poor little guy! Sarah had tubes put in her ears and tear ducts in June and had a discharge out of her left ear about a month later. I didn't know it was an ear infection but fortunately we had an appointment with the ENT for a followup visit. Sure enough, it was an ear infection but she never ran a fever. My older daughter had frequent ear infections and always had a raging fever, too. Sarah had never had an ear infection (that we knew of) before her tubes but had a massive amount of fluid. I suspect that she did have some undiagnosed ear infections now that I think back. Since she got tubes, her walking has improved dramatically, she is starting to say words, and her signing is really coming along. Before Sarah got tubes, I was at our local Children's hospital for an appointment when I met another mom of a child with Ds. She was watching Sarah walk and asked if she had tubes in her ears. I thought that was an odd question but told her no, she hadn't even had any ear infections. She said that judging from Sarah's wide base, she felt that she had fluid in her ears. Hmmm.......sometimes the mommies know more than the doctors and therapists. Shortly after meeting that mom, Sarah failed a hearing test, we went to the ENT and two weeks later she had tubes. I read somewhere that 80% of adults with Ds have some hearing loss. Just because a child does not appear to have ear infections doesn't mean that his ears are okay. Chronic fluid can be terrible for a child's development. Valerie, I would trust an ENT before I would trust a pediatrician. The ENT probably has a lot more experience treating patients with Ds. Chris
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Post by Debi on Aug 12, 2004 16:24:53 GMT -5
Aww hugs to Ethan and to YOU to Laura!!! Sure sounds lke you did just the right thing and Ihope by the time you get back to us all is well with Ethan.
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Post by christie on Aug 12, 2004 19:30:43 GMT -5
Awwww LAURA I just read your post here. Many Many good thoughts and prayers going out to you and ETHAN. I am hopeing by now you are all home and ALL is well. PLEASE PLEASE post up when you can to let us know everything is OK CC ~
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Post by Emilysmom on Aug 12, 2004 20:33:36 GMT -5
Laura~ I must say I am SO glad you are a pain in the butt!! It's a great thing you kept pursuing it, cause you know your little guy and finally you got him some help!! I've heard many times that doctors look into the ears of little ones with Ds and say everything looks ok......when in honesty, they really were not able to see the eardrum because of the tiny ear canals. ~ My thoughts are with you. Please post up and let us know how Ethan is doing after the surgery. Hugs to you too!!!
Susan
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Post by alisonzmom on Aug 12, 2004 23:16:05 GMT -5
Hoping all is well with Ethan and that his surgery went smoothly.
He is one very lucky little boy to have such a "pain in the butt" for his mom!
Barb
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Post by laurasnowbird on Aug 13, 2004 0:08:51 GMT -5
Whew! So glad that's over! Thanks for all the positive thoughts and prayers you guys, I'm sure they helped!
Things went very well today. The tube in Ethan's right ear was still in, but barely, so the doctor replaced that one. The left ear was another story though. The tube had actually fallen out, and was trapped in his ear canal. It was rubbing against his EARDRUM, and causing the tremendous pain and bleeding. I could just scream when I think about it. He removed that tube and replaced it with another. This was the first time Ethan has had surgery without IV anesthesia and being intubated, and it was soooo much easier on him.
Valerie, I am probably the wrong one to ask about tubes in kids with DS. I don't think kids with DS should be treated the same as typical kids as it relates to a "safe" number of ear infections. There's no such thing, in my book. Statistically, about 80% of kids with DS having acquired hearing loss. Since we are already facing language delay, they certainly don't need the added problem of hearing issues. Typical kids don't face that 80% hearing loss number, so maybe there is a safe number of infections for them, but I don't believe there is one for our kids. I am actually a big believer in tubes as a preventative measure, and that is part of the reason Ethan got his first set.
Ethan has never had an ear infection that we are aware of. (In fact, the pediatrician was wrong about him having an infection this time, it was discharge caused by the tube!) I am a maniac about the whole hearing thing, and he has been seen by an ENT every three months since birth. The tubes were put in when he was 21 months old because his hearing tests were a little suspect, and because he wasn't talking at all yet. Many doctors will attribute that to the DS, but I wasn't buying it. He didn't babble as much as I thought he should earlier. We put his tubes in last September, and he began to say a number of words within a month or two. Because the only way to get a really accurate hearing test in a child that small is with a sedated ABR, we had the ABR done when he was under for the tubes. His hearing was actually normal, but I don't believe for a minute he was hearing normally before the tubes were inserted.
It is very common for kids with DS to have fluid behind the ears WITHOUT infection, so you would have no way to know it was there. The fluid even without accompanying infection is a very negative presence. It's like trying to listen to someone talk underwater. And Susan I think you are totally right that doctors look in our kids ears and pretend to see things they can't.
Oh, and Valerie, before I forget, I had read a couple of studies about negative consequences of tubes in kids with DS, and I took them to my ENT to discuss them in advance of Ethan's surgery. I scheduled an appointment with him, took the medical abstracts in question, and said "I'm sure you've seen these, what is your opinion about them?". He was great about addressing my concerns, and basically said that the studies were flawed because they compared kids with DS to kids without DS, and he feels that the comparison is inappropriate because the anatomy of our kids' ears is different, and that they have much smaller than average ear canals. He also mentioned that there is ongoing discussion about some patients in whom the hole in the ear doesn't close after the tube falls out. It is the opinion of my ENT and many others that in those kids whose ears fail to close that hole, it is because the body is purposely maintaining the hole because it is needed for equalization of pressure, and drainage.
I would take the word of a specialist over your regular pediatrician, but if you are still feeling uneasy, I would see another ENT. The bottom line is that you have to trust your gut. Mine was screaming yesterday after his ped. said he had an infection, but no fluid, etc. It simply didn't add up when I considered his other symptoms. I have learned the hard way with Ethan's issues to educate myself, and not to let doctors intimidate me. Good luck, and let us know how it goes!
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Post by MaggiesMom on Aug 13, 2004 0:39:37 GMT -5
So glad to hear that Ethan made it through surgery well. I'm sure you are glad that is all ove with!
You GO GIRL! on that hearing issue and fluid for kids with DS. Amen! and preach it till the cows come home!
Tubes in Maggie's ears made a HUGE difference. She was a whole new child. She could balance, walk, talk and hear things she'd never heard before. I'd get them in a heart beat if I thought she needed them again. IN fact, it took a lot for the ENT to convence me that he didn't need to put them back in when the 1st set fell out! But so far, so good!
Keep us posted on Ethan's progress. I'm sure he'll be much happier now.
Couldn't you just strangle that ped? GRRRRR!
Robin M - Maggie's mom
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Post by Robin on Aug 13, 2004 8:20:03 GMT -5
Yikes laura...I just saw this! How is Ethan doing today? how di the surgery go for him? Grrrrrrr to your other dr, this is the EXACT same thing that happened with Chase, I could of written your story myself. Poor babe, er infectionsa re so awful and to have to have it this long and be in pain, Give us details, how is he now? And btw....I noticed Susan found a really polite way to call you a PITA, did you notice Just wanted to throw a little humor in there to try to cheer you up. hugs, Robin
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