Need advice and opinions about removing tonsils and adenoids

[Wild Lupine]

DS is 20 months old and has a variety of feeding issues. Right now he only takes in liquids. He used to eat very smooth purees like yogurt and sweet potatoes but has since stopped. The older he gets the more vocal he is about not wanting food. All I have to do is take his plate out of the cabinet and he screams 'no.'

After a consult with a feeding specialist and an ENT, we have learned that he has very enlarged adenoids, a high arched palate, and very enlarged tonsils. The ENT thinks the adenoids definitely need to be removed and has left it up to us to decide if we want to remove the tonsils now or later (later being if removing the adenoids doesn't help him eat or when he gets older). He doesn't generally recommend removing tonsils in children under three, but when it is absolutely necessary - and he thinks it might be in DS's case - he does it at a large hospital with a pediatric ICU.

BUT, the feeding specialist doesn't think we should have any surgery right now because DS has significant oral aversion due to being on an NG tube when he was a few months old. He is receiving OT to help him with this.

Nutritionally he is doing fine. He had been FTT, but now he is growing well.

Another factor to consider though is that when he gets even the slightest cold he doesn't sleep more than five minutes at a stretch because he cannot breathe well. That's really hard for me to cope with because I end up getting almost no sleep for 2 - 3 days. So I'm leaning towards removing his adenoids.

DH and are also thinking that his refusal to swallow is so extreme that it is hard to imagine his feeding issues improving without removing his tonsils and it would be better to do one surgery and remove them both rather than two.

If you have read this far, thank you! And ifyou have any words of wisdom, I'd love to hear them.

[moongazer]

FWIW, both our ENT and Ped told us that adenoid surgery by itself is much less painful than when they remove the tonsils too. If he already has oral aversions, maybe it would be worth trying it first? Although I totally understand wanting to limit the number of surgeries. My ds is scheduled for the adenoid removal on May 24. He is 13 mos. I can let you know more after that.
Good Luck!

[KatWrangler]

Talk to Steph. Her son just had his out recently.

[2boyzmama]

I would caution a few things...you say he has a high arched palate...has he had a *very thorough* palate eval? If he has a submucous cleft of the hard or soft palate, or if he has VPI (velopharyngeal insufficiency) then removing his adenoids might be the last thing you want to do. In the case of VPI, adenoids often HELP with swallowing and breathing, which seems backwards, but it's true. Also, the adenoids are tissue that could be used in a palate repair, if necessary.

It is very easy to miss a cleft and even easier to miss VPI. So he needs to be seen by a palate specialist, not just an ENT. And he might need to be seen several times. My son went 4 times to the cleft palate team before anyone saw a soft marker for a submucous cleft (he had symptoms of a cleft, but no physical signs until that 4th appt when a subtle sign was seen).

Also, I'd talk long and hard with the feeding therapist about the oral aversions and what effect surgery might have. It might help, but the pain recovering from surgery might set him back really far. Of course a temporary setback is sometimes worth a long term gain, so you have to weigh the options carefully. But make sure that you take the time to talk it over at length. Maybe get the ENT and feeding therapist together so you can all discuss it together. It's important that the ENT understand the implications of an oral aversion, and it's important that the feeding therapist understand the implications of enlarged adenoids.

Good luck whichever way you end up going!!!!

OH! Can't believe I forgot! Has anyone looked into allergies or other potential causes of the enlarged adenoids? Often there is a cause, and while removing the adenoids can help, it doesn't remove the underlying cause. Food allergies and environmental allergies are often to blame for enlarged adenoids, so it's definitely worth looking into those *in depth* before resorting to surgery, if possible. I'd start with removing all dairy from his diet, get a non-dairy formula since he's still on liquids. Get him to an allergist to look for other allergens. Have you done a trial of antihistamine and/or steroids to see if they have an effect?

[Wild Lupine]

How do I talk to Steph? How old is her son?

The ENT did check for a cleft (as did his feeding specialist). Neither saw any evidence of one and didn't think he showed enough symptoms to be suspicious of one. His speech is fine and he doesn't have any leakage of fluids into his nasal cavity. But the ENT did say that he would be able to check the muscles in his palate if he were to do the adenoid surgery. So they're thinking no cleft right now. I hadn't considered allergies; he has an appointment with his ped in a few weeks and I can talk this over with her then.

Right now it is looking like the swallowing issues are more severe than the sensory issues; he'll take things into his mouth that he didn't before (as long as they aren't food). But who knows how much surgery would set him back?

[KatWrangler]

Here you go!

http://www.mothering.com/discussions...light=adenoids

[StephandOwen]

I will say first of all that I have no info about the palate/cleft/VPI. My ds didn't have any of those problems.

DS had very swollen tonsils and adenoids for pretty much his whole life. He also has a lot of sensory issues, including feeding issues. He had/has a limited number of foods/drinks he would eat. He was in feeding therapy for a little while, but have since stopped (his behavior issues were interfering with any chance of progress with feeding).

DS had ear tubes put in a couple years ago. At that time we talked to the ENT about getting his tonsils and adenoids out but I chickened out and we didn't do it. I will admit I was scared to death how it would affect his eating, with all his issues he already had with that.

Over the past few years we've seen ds's behavior do a nose-dive. His behavior had gotten really bad, especially at school. Over a series of events, we realized ds has obstructive sleep apnea. He was struggling to breathe at night (his tonsils and adenoids were so swollen they would block his airway at night, forcing him to wake up trying to breathe). Because of this, he wasn't getting very restful sleep. At 6 1/2 years old he woke more at night than he slept.

4 weeks ago tomorrow ds got his tonsils and adenoids removed. The recovery was slightly more difficult than in a typical kid, because he refused to take the pain medicine by mouth. That lead to more pain and it eventually got out of control and he was refusing anything by mouth (water, popsicles, etc). He had the surgery done on a Friday and went home hours later in a great mood! Smiling, laughing, talking, drinking. Saturday it started going downhill and by Sunday he wasn't doing well at all. He ended up being admitted to the hospital on Sunday and spent Sunday, Monday and most of Tuesday in the hospital with IV fluids and morphine. We decided to stop the oral pain meds we had been trying and went to tylenol suppositories (wish we would have thought of that BEFORE the surgery as the whole hospital experience might have been avoided, but hindsight is 20/20). The tylenol suppositories worked great and every day was better than the last. He stopped pain meds altogether on Easter (9 days after surgery) and went back to school the next day after that. Since then he's done WONDERFUL!

The changes this surgery has brought have been close to a miracle. He is no longer having behavior issues. He had a little bit of a rough time the first 2 days he went back to school (which were days 10 and 11 of recovery) but from day 12 until now he's had PERFECT days at school! This is a child who was constantly in the office or in the special ed room because they didn't know what to d with him. He had become quite aggressive with the teachers and aides before the surgery and we were very worried. Before the surgery he had maybe one good day each week. Now every day is a GREAT day! Everyone at the school is amazed. Today was the 12th perfect school day in a row. He has NEVER had 12 perfect school days in a row, or even close!

DS is sleeping at night. He can sleep on his back with no problems at all. He doesn't wake up struggling to breathe. He doesn't wake up at all! In the last 19 days (since we stopped waking him up to give him pain meds at night) he hasn't woken AT ALL! He has never, in 6 1/2 years, gone that long without waking at night!

As for ds's oral/feeding issues... it was not as hard as I thought it would be. After ds was released from the hospital he went back to eating fairly normal for him except he is eating a LOT more. He's not really eating new foods, but he's eating a lot more of the foods he does like. We will probably put him back in feeding therapy this summer since the behavior issues seem to be resolved.

If I knew years ago what I know now, I probably would have strongly considered the surgery then. Who knows where ds would be now if he was sleeping better at night years ago?

[StephandOwen]

I realized I didn't hit on the one surgery vs two..... if you think he will need his tonsils out I would do it in one surgery. I wouldn't risk anesthesia twice if you could get it all over with once. It is quite possible that his enlarged tonsils are keeping him from swallowing (we now see that that was part of ds's problem... it was so hard to swallow with the swollen tonsils so he didn't eat a lot, just enough to take the edge off his hunger). If I were in your position, being where I am now, I would strongly consider the surgery and removing both. I would also suggest keeping him in the hospital overnight (since he is so young). Also, if he has a hard time taking meds by mouth I would suggest tylenol suppositories for the pain. Also, look into compounding pharmacies. We found one here that make suckers that numb the throat . Such a cool idea and they really work (I tried one ). DS wouldn't even try it though, so that sucked, but if he had it really would have helped numb the throat!

[Wild Lupine]

Thanks for all this info! It is very helpful, especially to think about where we might be headed if he gets older and end up with sleep issues (right now he's an awesome sleeper except when he's sick. I often say he either sleeps 11 hours at night or none, there's no in between with this kid!)

His ENT will only do the tonsils at Boston Childrens because they have a pediatric ICU, so he'd definitely be there overnight with the best facilities available to him. I also don't like the idea of anesthesia twice if he needs to have his tonsils out anyway.