Advice for ENT visit

[faith]

Update after the ENT visit:

 

okay, interesting, it looks like my son does have large enough tonsils it seems. We discussed PANDAS, but it seems he feels without evidence of strep or titers, and that I didn't really see any improvement while trying the abx, then its probably not a PANDAS issue as far as tonsils go anyway. He wasn't adamant or anything, just trying to put the peices together. he was open and listend tho.. However, not even looking at it from a PANDAS standpoint, he advised me to observe my son's sleep and breathing, and was sure we'd find that he has some apnea and labored breathing at night. I never really paid attention, but I did last night, and he definitely does, I even video taped him, noisy little guy. He was surprised I handn't been in before this. But the interesting part was when he found out my son's weight, (hard to tell under all those baggy clothes.....recall we discussed weight issue above in this thread)...... well it seems "failure to thrive" is actually a consideration here, for he says that he's probably a picky eater and doesn't eat well (true and always was) due to the large tonsils, and if he's not sleeping good, (not good for tics and neuro issues) put it all together and it was a no-brainer for him (his words). He is actually recommending removal. I guess I was kind of not expecting that, but he wants me to go and observe him and be comfortable with the decision, so I'll get back to him. Really interesting about the weight, there is actually info on the net regarding tonsils and low weight or "failure to thrive"... he thought that was really light for his age (almost 11) and was surprised that my peds weren't worried about that. (the old one I had always thought he was better off skinny than obese).

 

I asked about the strep being hidden in there, he said there's really no way to get that done. He felt there was a chance it could help with my son's issues, altho the jury is still out, there's no evidence one way or another, seems to be hit or miss. I mentioned Swedo, and he basically said that there's a gray area about PANDAS, some like Swedo basically think everyone has it, some neurologists don't believe in it at all, and then there's somewhere in the middle, (where he is at). So he has no problem taking them out, but his reasons are the size, sleep apnea, and failure to thrive. we're not really looking at it in terms of strep and PANDAS. So looks like the same reasons as CP above.

 

I still have these immuno tests to be done this week and would like to see if they show anything interesting. I don't want to make the decision until I know everything.....gosh, what would you all do. I...I.. feel somewhat catatonic, right now.....MY steroids are wearing off. what do I do next?

 

thanks

Faith

[peglem]

Update after the ENT visit:

 

okay, interesting, it looks like my son does have large enough tonsils it seems. We discussed PANDAS, but it seems he feels without evidence of strep or titers, then its probably not a PANDAS issue as far as tonsils go anyway. However, not even looking at it from a PANDAS standpoint, he advised me to observe my son's sleep and breathing, and was sure we'd find that he has some apnea and labored breathing at night. I never really paid attention, but I did last night, and he definitely does, I even video taped him, noisy little guy. He was surprised I handn't been in before this. But the interesting part was when he found out my son's weight, (hard to tell under all those baggy clothes.....recall we discussed weight issue above in this thread)...... well it seems "failure to thrive" is actually a consideration here, for he says that he's probably a picky eater and doesn't eat well (true and always was) due to the large tonsils, and if he's not sleeping good, (not good for tics and neuro issues) put it all together and it was a no-brainer for him (his words). He is actually recommending removal. I guess I was kind of not expecting that, but he wants me to go and observe him and be comfortable with the decision, so I'll get back to him. Really interesting about the weight, there is actually info on the net regarding tonsils and low weight or "failure to thrive"... he thought that was really light for his age (almost 11) and was surprised that my peds weren't worried about that. (the old one I had always thought he was better off skinny than obese).

 

I asked about the strep being hidden in there, he said there's really no way to get that done. He felt there was a chance it could help with my son's issues, altho the jury is still out, there's no evidence one way or another, seems to be hit or miss. I mentioned Swedo, and he basically said that there's a gray area about PANDAS, some like Swedo basically think everyone has it, some neurologists don't believe in it at all, and then there's somewhere in the middle, (where he is at). So he has no problem taking them out, but his reasons are the size, sleep apnea, and failure to thrive. we're not really looking at it in terms of strep and PANDAS. So looks like the same reasons as CP above.

 

I still have these immuno tests to be done this week and would like to see if they show anything interesting. I don't want to make the decision until I know everything.....gosh, what would you all do. I...I.. feel somewhat catatonic, right now.....MY steroids are wearing off. what do I do next?

 

thanks

Faith

I'd get them out and biopsied! When my daughter was 5...she had the same thing with the eating, was in the below the 2nd percentile for height and weight- didn't sleep well, frequent ear and sinus infections...nobody ever looked at her tonsils. The doctors all just thought it was her autism (these things are common in autism you know!-perhaps they wouldn't be if doctors would treat them!) Anyway- SOMETHING is making his tonsils big and you're bound to see improvement with better sleep, eating, and breathing!

[thereishope]

You can look at it from different angles. Not PANDAS....if he has sleep apnea, that can snowball into ADHD type symtpoms. So, if he ADHD type behaviors...the tonsils might be you explanation for that. Another non-PANDAS thing...he says his weight and picky eating is due to his tonsils. According to him, if tonisls are removed, he will eat better.

 

However...my ENT told me that when they are huge to the point that they bother a child with food, it would probably affect their speech too and sound like they talk with marbles. Not saying his word is God's, but passing on what he told me.

 

When your son swallows food, does he hesitate with every swallow like he's working at it? It didn't sounds like his faves were necessarily ones that did not require a lot of chewing with chunks. Have you asked your son if it hurts to swallow?

 

Now for Pro-PANDAS dx...There are other behaviors he has that would not go away with a t and a, so where's the explanation for those problems? Didn't you say his tics and such do worsen with viruses?

 

Me, my opinion, I would probably have them taken out. That is just my opinion. If they are big as the ENT said, it can be hiding strep. Soemone said they can culture and biopsy tonsils after removal. Ask him if he will do this. But if you have the tonsils out, as I suggest to others, do it at a "off" time just in case there is an exacerbation following surgery. Also, get the ENT to commit to antibiotics after surgery. Have you tried keflex yet? It's a good way to also get a trial of that. Granted, you may then be placed in the situation..is he doing better becuase of the keflex or because of surgery. maybe ask him to prescribe the keflex as the pre-surgery ab too. You usually start those a few days before surgery.

 

Best of luck in making your decison. Keep us posted.

[fuelforall]

Faith.

 

Get 'em out. The tonsils, I mean. I think it can only help at this point. Immuno tests should not interfere with this decision.

 

We just got a March date, postponed from Feb due to.. well, you know.

 

IVIG should not happen until tonsils out, per Dr. T. So I gotta postpone that too.

 

M

 

PS Your son should go on a 14-day abx stint before surgery.

Then afterwards too, I guess.

[faith]

about the swallowing, I've asked him about it, but he says no, hard to get a good feel for it, he basically thinks he's fine. but not only is he picky, but he also eats very slowly, takes his time in between bites (unless he's starving, which is rare), he eats like he's on one of thos soap operas where everyone has food in fron of them in the fancy restaraunt, but nobody's eating, lol. So maybe subconciously there is something there, but its the norm for him so he doesn't realize anything....... it does seem he doesn't like things too much that require alot of chewing, like steak or burgers, so maybe something there.

 

he is definitely having trouble with attention, do you have any other info re that? I'm all for the eat and sleep better. and if by chance it helped with any other issues, I'll take it.

 

 

Micheal, you mean you have a T&A scheduled for your son too?

no matter what the immuno shows, it shouldn't matter re the tonsils? anyone?

[fuelforall]

Faith.

 

Get 'em out. The tonsils, I mean. I think it can only help at this point. Immuno tests should not interfere with this decision.

 

We just got a March date, postponed from Feb due to.. well, you know.

 

IVIG should not happen until tonsils out, per Dr. T. So I gotta postpone that too.

 

M

 

PS Your son should go on a 14-day abx stint before surgery.

Then afterwards too, I guess.

 

 

Sorry, make that 10 days abx.

[smartyjones]

oh faith - i do not envy you - what to do? please realize what a good mom you are and have been and what a good job you are doing looking after your son!!!

 

i know you've gone the naturopathic way searching for answers. you might be interested in this. a friend of mine's kids and she have lyme. there are many overlapping symptoms for lyme and pandas so i think she's always trying to get me to consider lyme. my son did have the traditional lyme test and was neg on all bands. however, many lyme experts don't consider the traditional test as the most valid. anyway - i was doing some research on lyme and found some comments from an integrative dr i've done some reading on. first of interest, he stated that strep is often present in lyme patients. i believe this to be b/c lyme patients often have trouble kicking infections. not trying to suggest lyme for your son - can't remember what you've done on this front.

 

long story longer - the point is that he said it is important to look at the tonsils, if they are scarred or have excess lymph tissue, surgical intervention is needed. otherwise, he doesn't believe the patients get well. he may do something different from traditional tonsillectomy but was thinking this was an issue to be addressed. granted this article was about lyme but it was in a section about the intersection with strep and tonsils. this guy is an integrative MD, not an ND and on some tenants, may be seen as out-there but i like him. although i don't know him too much, i was still surprised to see him recommend surgical intervention with tonsils b/c although we haven't investigated it for my son, i'd generally think it's not so much an integrative/naturopathic recommendation.

 

long story even longer -- i was surprised to see this recommendation for surgical intervention from this guy.

maybe this is a step in the right direction - ? - if you do that, i'd certainly investigate biopsy to help with your questions of strep.

[P_Mom]

TAKE THEM OUT!!!

 

My son had labored breathing also....things were sooooo much better for him once we removed everything....tonsils and adenoids! He was much happier and healthier......if I could send you a before and after t/a, you would be amazed.Before...skinny, drawn face, circles under eyes.........only 6 months later...filled out, glowing face, no circles.

 

He is the same age as your son and weighs 100 lbs....he is also pretty tall (not heavy.......just right)

 

Dr L was glad they were removed from a PANDAS point of view and recommended removal for our younger son....already saw ENT....appoved for removal and waiting to set up the surgery.

 

Thia one Faith.....yes, take them out!

[faith]

lyme is one of the things on the immuno work up from the DAN doc, I basically asked if he could test for this that and the other thing... .... but interesting.

[thereishope]

I'll look for info on that connection. but a psychologist told me the apnea/ADHD-like symptom connection.

 

I'm sorry, Faith, but I think the eating thing is more than tonsils. That sounds like an ex-friend of mine in high school. She had anorexia. She even set her watch in front of her so she can time in between bites. Also, the baggy clothes thing, you say it's fashion and "feeling" thing, but some people with eating disorders cover up their bodies with baggy clothes because they are self conscious. How does he perceive himself overall? Does he exaggerate every flaw he has? Does he avoid mirrors?

 

I really don't want to scare you, but I just don't know...maybe it's my long distance mommy gut about your son. If the tonsils help, then, hey, that would be awesome!

 

As for abs post surgery, I think the timeframe on that varies by doctor. Talk about that ahead of time. the lonegr, the better.

[faith]

TAKE THEM OUT!!!

 

My son had labored breathing also....things were sooooo much better for him once we removed everything....tonsils and adenoids! He was much happier and healthier......if I could send you a before and after t/a, you would be amazed.Before...skinny, drawn face, circles under eyes.........only 6 months later...filled out, glowing face, no circles.

 

He is the same age as your son and weighs 100 lbs....he is also pretty tall (not heavy.......just right)

 

Dr L was glad they were removed from a PANDAS point of view and recommended removal for our younger son....already saw ENT....appoved for removal and waiting to set up the surgery.

 

Thia one Faith.....yes, take them out!

 

 

100 lbs? very interesting. so you say he grew alot better after? did he start eating better?

[faith]

I'll look for info on that connection. but a psychologist told me the apnea/ADHD-like symptom connection.

 

I'm sorry, Faith, but I think the eating thing is more than tonsils. That sounds like an ex-friend of mine in high school. She had anorexia. She even set her watch in front of her so she can time in between bites. Also, the baggy clothes thing, you say it's fashion and "feeling" thing, but some people with eating disorders cover up their bodies with baggy clothes so because they are self conscious. How does he perceive himself overall? Does he exaggerate every flaw he has? Does he avoid mirrors?

 

I really don't want to scare you, but I just don't know...maybe it's my long distance mommy gut about your son. If the tonsils help, then, hey, that would be awesome!

 

As for abs post surgery, I think the timeframe on that varies by doctor. Talk about that ahead of time. the lonegr, the better.

 

I agree, there's more to it than this. but nice if a little peice of it would be fixed. if he gained a little weight, he might feel better, I know he desperately wants to, he says he wants to, and does not like being small, he mentions it, that he sees everyone is bigger than him and weighs more. but he doesn't do anything about it as far as eating, I tell him the only way to gain weight is by eating, its not like he piles it in and nothing happens, I can see he eats less than I do. with eating slow, he probably gets full faster, you know how they say if you eat fast you put more food in than you really need because it takes about 25 minutes for the message to get to the brain that you are full, something like that. But yes, he does wear bigger clothes to hide that he is skinny, no doubt. Very shortly, next week, we will be starting therapy for OCD for him, and this doc is supposed to be one of the best, so maybe he'll be able to address some of that and see where he stands. Really he is a good looking boy, small features, very cute, but at this age, all they see is their flaws.....really I am getting a little nervous, especially when I see his little riblets sticking out.

[P_Mom]

yes..and yes. You got a recent pic of my son (I am talking about the older one).... I'll have to e-mail you a picture of him before removal and about 6 months after. I was shocked at the difference.....this was done when he was 7. The younger, the better....Dr.L told me.

 

He had it for the same reasons as your son....although the failure to thrive pobably wasn't as noteable.....he couldn't breathe....very large tonsils and 100% blockage of left nostril from his adenoid....did the doc check his adenoids? They were my sons main problem.

[thereishope]

Aren't there other problems that can occur that prohibit weight gain, like thyoid issue or something? Okay, I'm entering waters I know nothing about but maybe others can chime in.

 

I ask about flaws for a reason. It's one thing to see your flaws and hate them another to distort them. I wonder if he distorts what he sees. That's the hard thing about an 11 yr old, they know they hidden meaning behind questions and words. If you look in the mirror the same time as him and ask him what he sees...he knows there's another motive.

[swim]

Faith,

 

Your son sounds very similar to our son - he is 11 and very thin - just reached 60 pounds. Slim size jeans tightened all the way are almost too big for him. Our 8 year old started handing clothes down to the 11 year old last year - a sad day for me. He eats like a bird and it drives us crazy. He says he wants to gain weight, hates being small and is easily distracted when it is time to eat. Noisy and restless sleeper that does not sleep much. Has a hard time getting to sleep at night.

 

Doctors have never commented about his tonsils, but we found a large cyst on his adenoids yesterday from an MRI. Doctors can't see the adenoids during an exam because they are behind the tonsils. Our Ped is thinking maybe the cyst is carrying strep and the keflex has not been able to address the strep in the cyst. I am hoping to have the adenoids (and probably tonsils) removed after our discovery yesterday, but I am waiting to see when we can go back to the ENT for further review. Interested to hear what you end up doing on tonsils and if they do a biopsy. We will definitly ask for biopsy of the cyst if we can get them to take it out.