Updated in OP: Tonsil and adenoid removal?

[theriviera]

Update:

We sought a 2nd option with a pediatric at a huge, well respected university. She did an x-ray and it turns out that her adenoids are huge, taking almost the entire space. We are doing the T&A next Thursday.

Do you wise mamas have any tips on making my DD more comfortable after surgery?

Also, the ENT mentioned that behavior and sleep could get worse before they get better. Something about her brain having to relearn how to spend more time the sleep cycles and have more REM sleep. Did you experience this?

DD1 had a consult with an ENT this morning. We ended up there after I expressed some concerns (and the ped witnessed) about my DD's behavior. Long story short, she wakes up cranky, despite going to bed at 6:30 and is really, really, difficult to manage. She is struggling with preschool (which is all social skills). In general, she seems really unhappy :(.

I had mentioned that DD snores and the ped told me to observe her sleeping. I did and I noticed that she holds her breath for a brief second and then breathes again.

My dad has sleep apnea, although he is not overweight (he's a small guy). The ped suggested we see the ENT.

ENT said this morning that her tonsils are very large (something about a 4), and that is just sitting up, that they would block more of the airway laying down. She also suspects her adenoids are large based on hear ear (but i don't remember why, something about a sound?).

She recommends having the tonsils removed and if necessary, the adenoids. She says that if we want more concrete data, we can do a sleep study first. I cannot imagine DD1 sleeping for a sleep study, she is such an anxious kid to begin with.

Anyways, has anyone had this surgery? How did it go? How was the recovery? Did it make a difference?

On the flip side, did anyone just wait it out? She did say that she doesn't recommend that but I know that DH is worried about DD1 having surgery.

Thanks!

[Tondi G]

I had my tonsils and adenoids removed when I was in 3rd grade. Having both the tonsils and adenoids removed made a HUGE difference in the frequency of ear infections for me. I remember recovering very quickly. I had a very sore throat for a few days. I got to eat a lot of jello and popsicles! Kids bounce back from tonsillectomy and adenoidectomy really quickly. If the ENT is suggesting it be done, I would probably go ahead and do it.

[gatorsmom]

I had my tonsils out (not sure about adenoids) in college after many serious strep throat illnesses. I remember drinking a lot of milk shakes. I also remember the recovery time wasn't bad.

But most of all I remember thinking I wish I would have done it sooner. I haven't had a really sore throat since.

[megs4413]

My son had this surgery for this reason.

Honestly, the sleep apnea is a BIG deal. I would NOT wait on it if that's what's going on, BUT you don't know exactly for sure that that is what's going on (though I would believe the ENT probably) so you may feel better after you have some concrete data from a sleep study. Trouble is, IME, sleep studies take FOREVER to schedule. I mean MONTHS.

So, if it were me, I would probably do the T&A based on your DD's symptoms and the ENT's assessment.

I cannot stress to you how many ways sleep apnea affects a kid. Have you looked into it at all? Anxiety is a symptom. Imagine your child with less anxiety. It would be worth it, IMO. HUGS!

[Multimama]

We went through this. We did the sleep study. It was extremely helpful to me to do the sleep study although the ENT didn't seem convinced it was necessary. I felt more comfortable going into the surgery having that "proof" and knowing that this really was necessary for him. We are also going to do a follow-up sleep study to make sure that the sleep apnea has improved with the surgery and to see if he still needs further treatment, so it's helpful that we have that pre-surgery data for comparison. The doc in charge of the sleep study was pretty convincing about the value of doing the study first.

[BabbyO]

My sister had her adenoids removed when she was young - maybe 2nd grade. It helped tremendously with her sleep an snoring. Her tonsils were removed when she was in college because of MANY strep infections - multiple every year.

She is thinking about talking to the Dr. about having DNiece's removed because she sleeps SO poorly and snores (and according to my parents snuffs, and gurgles and all sorts of stuff) in her sleep. She really believes that this is affecting her quality of sleep - which inturn affects her behavior.

I think in the situation you described, I'd proceed with the surgery. It sounds like more than a minor issue.

[Simon]

We had this surgery when Ds1 was just over 4yo when we had a newborn in the house. The impact on his sleep was nothing short of amazing. I would do it again in a heartbeat. His tonsils were about a 4 but we didn't bother with a sleep study because he was snoring, mouth breathing at night and I knew he was having apnea episodes so I didn't feel like I needed more proof. Our ENT said he'd do tonsil removal and evaluate the adenoids at that time and leave them if possible or remove if necessary. ENT later estimated adenoids were blocking 90-95% of the airway!

Ds1 did have a slower recovery then I tend to read about (on older BBB posts or elsewhere online). He used the max dose of pain killers for about 3-4 days and he was not his usual self--wanting to rest, eat soft foods, etc. I always read about kids bouncing right back and I'll be honest and say he didn't for about 4-5 days. Then, he had some nightmares (very mild ones) but we were told it could be a side effect of the anesthesia. After those passed, he was much better rested. It was one of the best things we could have done for him. In fact, I didn't even know these things were a problem before I read about it here on the BBB.

Ds2 also has enlarged adenoids but not as big. We did a scope and they're not big enough to jump straight to surgery. We have been controlling them via a steroid nasal spray. Its not hard and it worked pretty quickly. The down side is that we'll have to use it for several years (probably 2-3) before we can again evaluate whether they're still causing blockage and even then we might have to do surgery.

At this point, IIWY, I would schedule right away. It sounds like its having a major impact on her life.

[ShanaMama]

DD2 just had her tonsils & adenoids removed in January due to recurrent strep. Incidentally, she also snored very loudly even when not asleep. The surgery was the best thing for her. I also have a neighbor whose child was always lethargic, among other symptoms. They were testing for horrible diseases when they decided he wasn't sleeping. After removing his adenoids he became a different child.
A few points to keep in mind:
1. Make sure they are removing & not clipping. Clipping is a new trend which according to my Ped is worthless.
2. When they say a weeks recovery time, they don't mean 5 days. They mean a week. You or DH will probably need to take off & plan for a not sick but pretty cranky kid for a week. After that its all uphill.
3. A great book to prepare DC for the surgery is No More Tonsils by Juliana ? It's on Amazon. It's written by a kid. We read it numerous times & really helped prepare my slightly anxious DD. ex: it didn't occur to me that she'd wake up with an iv. Te book explained that. ( they put it in after the kid is asleep ).

[hillview]

DS2 had adnoids removed and then went back and had tonsils removed in a second surgery. The surgery was easy and so was recovery. In the ACTUAL recovery room DS2 had about 5 mins of freak out time as the ansthesia wore off but other than that it was fine.

[lalasmama]

DD had it done at 4yo, and it was easy-peasy. Seriously, I freaked out about having it done, but DD was having similar issues as yours--extended pauses in breathing during sleep, snoring, significant social/behavioral issues--as well as continual infections. The general practioner we'd been seeing kept diagnosing sinus infections and ear infections in DD. Commonly, she was on amoxicillin or augmentin for about 2 weeks of every single month. She'd take the antibiotic, improve, go off it, and 2 weeks later, we were back in the doctor's office. When we hit round 7 of antibiotics--including 4 weeks of straight antibiotics on round 6--I demanded a visit to the ENT. Immediately, DD was diagnosed with adnoid infections (never knew this was even a possibility!), and the ENT doctor thought that a T&A was the only hope of ever ending the infections. I was a pretty easy sell on getting it done, really. DD was always in throat pain. I was, as expected, concerned about the surgery itself, but it was one of the best things we ever did. It was, by far, the beginning point of DD's turn around behaviorally. Of note, DD also has ADHD, and had been having symptoms since she was 3yo; on a "badness scale" of 1-10, DD's ADHD symptoms had been at a 8-9, and post-surgery, they went down to 5-6, once the sleep deprivation (because of her sleep apnea) had ended.

As far as the actual procedure, they gave DD some "funny juice" (versed), and she was giggly. They offered her some "chocolate air" and she waved goodbye to me, and happily left with the assistant. They gave her some gas through the mask, and then put her IV in when she was asleep. I went upstairs to the little cafe, got a cinnemon roll and a magazine, ate, and they had her heading into the recovery room before I'd started reading. She was slow to wake up. Other kids on the unit were having a hard time waking up--screaming, shrieking, otherwise seriously unhappy, but, apparently, all normal. DD woke up slowly, but as happy as a clam. We were home before 1pm. I made her take 1 dose of Tylenol #3 when we got home, to attempt to circumvent her pain, but she refused to take any after that. Before 3pm, she was mad that I said she couldn't go ride her trike outside. Before 5pm, she was asking to go to McDonalds for dinner. Seriously, it was like she had gotten a shot, not taken out tonsils and adnoids!

Now I'm likely getting mine removed in a few months, and I'm praying that mine goes as easy as her's!

[lmr1101]

Just so you hear all sides of this, my dd1 had the T & A surgery when she was a little over 3 yo. We also did it due to sleep apnea. (post-surgery the ENT said her T & A were as big as they possibly could be and still fit in her head :))
I'll say that we've had almost a year post surgery we've seen a HUGE improvement in her sleep. She used to wake up so wet from sweating it felt as if someone dumped water on her head at night. She snored and held her breathe... all of that is gone!!!

Now for the week post surgery. It was rough! She woke up screaming in the hospital (perfectly normal and we were warned about it) but still you never want to see your kid like that.
Then for the week we were giving her meds as often as we could. We felt as if we couldn't stay on top of the pain fast enough.
She is a little girl and ended up dropping 2 pounds during that week - down to about 26 lbs. We had so much ice cream and other yummy soft foods ready for her and she just wouldn't eat anything. We were able to get her to drink water so she was ok, it just wasn't fun for any of us. She had never sat and watched a tv show before the surgery and all she wanted to do was watch movies/tv. She just had no energy - which could also have been due to her not eating in addition to the recovery.

Now even after saying all of that I would do it again tomorrow if I had to!!! One bad week is worth it knowing how much it has helped her sleep!
I just want you to be prepared if the recovery is hard.

[westwoodmom04]

DD1 had a consult with an ENT this morning. We ended up there after I expressed some concerns (and the ped witnessed) about my DD's behavior. Long story short, she wakes up cranky, despite going to bed at 6:30 and is really, really, difficult to manage. She is struggling with preschool (which is all social skills). In general, she seems really unhappy :(.

I had mentioned that DD snores and the ped told me to observe her sleeping. I did and I noticed that she holds her breath for a brief second and then breathes again.

My dad has sleep apnea, although he is not overweight (he's a small guy). The ped suggested we see the ENT.

ENT said this morning that her tonsils are very large (something about a 4), and that is just sitting up, that they would block more of the airway laying down. She also suspects her adenoids are large based on hear ear (but i don't remember why, something about a sound?).

She recommends having the tonsils removed and if necessary, the adenoids. She says that if we want more concrete data, we can do a sleep study first. I cannot imagine DD1 sleeping for a sleep study, she is such an anxious kid to begin with.

Anyways, has anyone had this surgery? How did it go? How was the recovery? Did it make a difference?

On the flip side, did anyone just wait it out? She did say that she doesn't recommend that but I know that DH is worried about DD1 having surgery.

Thanks!

We waited it out. Dh is a surgeon and thought the surgery was generally overprescribed and didn't want our ds to be put under anesthesia. Our ped (a friend of DH) noted that ds had large adenoids and he agreed that while most ENTs would operate; he agreed with dh that most kids outgrow the problem (DS drooled a bit and snored a lot at 3; his adenoids were reportedly huge). DS was sent to a ENT who was known to be conservative, he agreed that ds did have very large adenoids, but that waiting would be an ok strategy as long as we did not wait more than a few years (he was also willing to operate as ds more than met the standard). Within two years, the adenoids were no longer an issue (no more drooling) although ds still snores.

I would get a second opinion, preferably from somewhat at pediatric hospital if one is available in your area.

[Momit]

I had my tonsils and adenoids out in high school after being sick almost continuously all winter, I felt horrible and just could not shake it.

I was so glad to have the surgery. I have never again been sick like that.

ETA another issue I had was breathing almost exclusively through my mouth. Not a sleep study at all, but the doctor did ask my mom to cover my mouth while I slept and see how long I could breathe through my nose. Apparently I started struggling and gasping after trying to take only one breath.

ETA 2 not sure what I would do if it were DS who would be having the surgery. He had another outpatient procedure that was necessary but not exactly an emergency and I was a nervous wreck about the anesthesia.

[marymoo86]

I had my tonsils and adenoids removed when I was in 3rd grade. Having both the tonsils and adenoids removed made a HUGE difference in the frequency of ear infections for me. I remember recovering very quickly. I had a very sore throat for a few days. I got to eat a lot of jello and popsicles! Kids bounce back from tonsillectomy and adenoidectomy really quickly. If the ENT is suggesting it be done, I would probably go ahead and do it.
:yeahthat:

and ice cream :) This was 30 years ago and I remember very well. It was fairly easy so I bet the surgery now is even easier.

[legaleagle]

DS2 had tonsils/adenoids/ear tubes done last summer at 2.25. He had apnea, had had chronic sinus congestion since about 8 months old - he basically always had a low grade sinus infection, and an ear infection for about 5 months straight. It was amazing, he slept so much better, talked better, etc.

He seems to be strangely impervious to pain so we just gave him advil. Waking up from recovery was rough, and his sleep was rough for a few nights but he never complained about pain and ate pretty normally right away. Also, there's often a resurgence of pain about 7-10 days out when the scabs fall off.

I had had my tonsils & adenoids out at 4 for sleep apnea, so I definitely think there were structural issues he wouldn't necessarily outgrow for apnea (leaving aside the sinus issues). If DD had the same symptoms we would operate, no question.

[RedSuedeShoes]

My DS had this done for the same reason when he was 5. Best thing we ever did! Wish we had done it sooner. We could not believe how much better he slept the very first night (even though they told us not to expect improvement right away because of swelling), and how much that affected everything. Sleep matters alot.

We were also really worried about pain management post-op for him because he was so averse to the taste of any kind of medicine that he always puked after taking it. The ENT told us to alternate tylenol w/ codeine and ibuprofen every 2 hours round the clock for 2-3 days so the pain coverage never wore off. So that's a minimum of 24 doses we were supposed to get him to take & keep down! Well, the bad news is he would not take one single dose. The good news is he said he didn't really need it! He was sore for a little while, but nothing unbearable - he just sat around eating popsicles, etc. for a day and then he was all better.

[theriviera]

update in the op.

[ShanaMama]

Good luck with the surgery. Once she was recovered, DD2 improved immediately. She speaks more clearly( we did tubes as well) & no longer snored while awake or asleep. There was no adjustment.
Ot, but they prescribed Tylenol w codeine & told me to wake her & give it to her so she wouldn't go too long. I don't think she has ever been more angry at me in her life than when I woke her. She was all: how would you like it if I woke you in the middle of your sleep?! She refused to take anything at all after her first dose. I stressed about it a bit but then just decided if she was in pain she's take it. She has a high pain tolerance ( obviously!) So know your kid & don't stress if you don't end up following the recovery directions exactly.

[MmeSunny]

My 5.5 YO DD just had a T/A last month. She has always been 2-3% for weight but 25-35% for height. She just wasn't growing. She snored horribly and was diagnosed with a dairy allergy. Her snoring was so loud that I never even had to walk down the hallway to her bedroom to see if she was sleeping. I could hear her through her bedroom door. She would need to sleep 10-12 hours a day to just be functional and would always be bathed in sweat upon waking from even the shortest nap. She was also very anxious and fearful of new things. The ENT said her tonsils were so large that she had never had a restful night's sleep her whole life.

After the surgery, I have a new DD. I would not hesitate to do the surgery again. She did AMAZING. The children's hospital had a picture montage detailing all the steps of the surgery and day that we went through two times before the surgery together. I also found a clip on-line about a girl going for the surgery that she watched and how the girl felt better afterwards. We laid out new special PJ's for her to wear for surgery (hospital said to wear pjs) and she picked a toy to bring along.

We also went shopping to the grocery store the day before surgery for her to pick out special treats to look forward to after surgery--juice, apple sauce, gummy bears, sweet tea (THE HORROR!!) All were encouraged by the docs as good pot-op choices.

She was also encouraged to rest and watch as much tv as she wanted (per post-op directions). Essentially, she could not wait for surgery.

Before the even left the hospital campus she was asking to eat. Specifically doughnuts. The doc said to give her what she wanted because they can eat. She wolfed them down along with two drink boxes and two cups of apple sauce. By 4pm that day, she was outside playing. The next day, no one who saw her could believe she had had surgery the preceeding day.

BUT SHE NEVER FELT PAIN. I warned her that I would wake her up every four hours to take medicine through the night. Which I did religiously for three nights. The meds kept any pain at bay and so she was able to eat/drink. We did whatever we had to do to keep that medicine going down. That is the key. Once they feel pain, they won't eat or drink anymore, which starts a cycle of not taking meds and dehydration. I believe that was the huge difference for her successful outcome.

That first night, I kept checking on her over and over as I couldn't hear her sleeping. It was a totally new child in that bed. Now she thrives on less sleep, is less anxious and can eat dairy. In the month since the surgery she has gained 5lbs on her formerly 32 lb/39" frame. It was the best thing for her whole personhood. So many issues have improved.

[BayGirl2]

DS had a T&A before he was 3. The recovery was not horrible as long as we kept up with the ibuprofen. As soon as his dosage ran out (8 hours IIRC) he became a crazy child! I mean unrecognizable. But "medicine" got him back to normal quickly.

The only thing I was not prepared for was his reaction coming out of the anesthesia. We were supposed to be there but we arrived too late and he was already awake and screaming. I held him in a chair. At one point they gave him a popsicle and his oxygen level started dropping. His lips turned blue, alarms went off, lots of drama. They gave him O2 and he was ok, but it was really, really scary for me to see that happening. It happened a couple times in the first hour with no explanation. DH has had bad reactions to anesthesia so we suspect its just hereditary. I wish I had been prepared for something like that.

Because he was under 3 the Dr. said it was a possibility he'd keep him over night. Even though the surgery went well they decided to keep him because of the O2 levels dropping. He was totally fine by later that evening and looked like a prince in his hospital bed by the next day. Sitting there with his foot up on the tray table, eating jello, watching TV - like a vacation. Still it was good to have some monitoring because we were a little freaked out by the initial post-surgery reaction.

[Simon]

We also went shopping to the grocery store the day before surgery for her to pick out special treats to look forward to after surgery--juice, apple sauce, gummy bears, sweet tea (THE HORROR!!) All were encouraged by the docs as good pot-op choices.

She was also encouraged to rest and watch as much tv as she wanted (per post-op directions). Essentially, she could not wait for surgery.

Before the even left the hospital campus she was asking to eat. Specifically doughnuts. The doc said to give her what she wanted because they can eat. She wolfed them down along with two drink boxes and two cups of apple sauce. By 4pm that day, she was outside playing. The next day, no one who saw her could believe she had had surgery the preceeding day.

BUT SHE NEVER FELT PAIN. I warned her that I would wake her up every four hours to take medicine through the night. Which I did religiously for three nights. The meds kept any pain at bay and so she was able to eat/drink. We did whatever we had to do to keep that medicine going down. That is the key. Once they feel pain, they won't eat or drink anymore, which starts a cycle of not taking meds and dehydration. I believe that was the huge difference for her successful outcome.

That first night, I kept checking on her over and over as I couldn't hear her sleeping.

I am glad you did the x-ray and scheduled the surgery. I know it can be scary but its so hard to explain how different and so much better it could be afterwards.

We also took Ds shopping for foods the day before and he chose a few favorites. We're an "anything goes when you're feeling sick" kind of family, but Ds1 just didn't feel very hungry and was "off" for nearly a full week after. As in, on day 6 post-op, he was still a bit worn out and not fully back to himself. He did have disturbed sleep for 2-3 weeks after but slowly improving. He had some bad dreams, which was unusual for him.

Like the Pp, we also were told that it is super important to keep up on pain meds and we did too (even waking at night). Ds wasn't in pain, per se, but still just felt off. Then again, he's more sensitive to things in general. It might be unkind but the word "wimpy" could apply there.

I will say that Ds1 is still a more anxious than usual kid so that part of his personality didn't change although I know it does for other kids. He also didn't grow/gain weight in the weeks/months after although I had hoped he might.

I did experience some moments of panic those first few weeks because I didn't even realize how accustomed I was to hearing him snore = he's still breathing. It was so quiet after. Its been a few years now, but Ds1 is such a great sleeper now. He falls asleep quickly and easily most nights and stays asleep until the AM with no problem. He also needs a lot less sleep than before.

[theriviera]

Thank you all for your support and advice!

I have another question: how did you prep your kid for surgery? I saw a pp mention a video. Dd is very anxious and was terrified of the X-ray. How much should I share with her beforehand?

My mom is awesome and is flying out here (cross-country, love her!) and that will be a big help. She is a very calming force for dd1. And me!

[MmeSunny]

The clip I mentioned was from our local news about summer surgery season here at our children's hospital. The featured girl just happened to be having a T/A. The picture montage with explanations was on the children's hospital website. If your DC is going to a children's hospital they may have something similar. If not, I can PM you a link to ours

X-rays freak my DD out as well. But I find she freaks less when things are explained in advance and go as promised. Yes, she is still anxious but now it's not of the "unknown".

[ShanaMama]

Thank you all for your support and advice!

I have another question: how did you prep your kid for surgery? I saw a pp mention a video. Dd is very anxious and was terrified of the X-ray. How much should I share with her beforehand?

My mom is awesome and is flying out here (cross-country, love her!) and that will be a big help. She is a very calming force for dd1. And me!

I mentioned up thread the book No More Tonsils. Look for it on Amazon. It's written by a kid & really well done. It mentioned things I didn't even think of discussing, like changing into 'hospital pajamas' & waking up with an IV. We read it many times & it really helped prepare DD. it also talks about being afraid, which kinda gives them permission to & allows you to discuss fears.

[theriviera]

I mentioned up thread the book No More Tonsils. Look for it on Amazon. It's written by a kid & really well done. It mentioned things I didn't even think of discussing, like changing into 'hospital pajamas' & waking up with an IV. We read it many times & it really helped prepare DD. it also talks about being afraid, which kinda gives them permission to & allows you to discuss fears.

Thank you, I ordered it and will be here Tuesday.

DD has a horrible cough, I hope that this doesn't interfere with her surgery. She has been sleeping so poorly lately.

[Simon]

We received a little booklet called, "A Guide to T&A" which described the procedure, although what were they thinking with that title?!?

Honestly, we didn't talk much about it with Ds1. He is also anxious and so we didn't want him to dwell on the surgery. We only read the book the day/night before, answered his questions, took him grocery shopping, reassured him that if it ever hurt then we'd take the medicine to make it stop. Then moved onto another distracting activity.

The morning of I could tell he was nervous so we just did lots of hugs, made sure he had any/all comfort items he needed, and the Drs. were awesome. I do use our own language for things like we call the blood pressure cuff the "arm hugger" because it puts a positive spin on it and it also describes what he'll feel. He can use the medical lingo but I also think it can be part of their fear because they don't really understand what all those things are for. For the IV, we call it a drinking straw. My kids love straws and it helped him understand why he needed it (we can't drink while we're asleep). We had newborn Ds2 and brought him to the hospital but I made sure Dh was there for the baby so I could focus on Ds1 as he's a total Mama's boy. His physical recovery took rather long after, but he wasn't emotionally upset or anything, he's just sensitive about lots of things.