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Advice for ENT visit


faith
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I've decided to take my son to an ENT (for what reason, I really don't know, :mellow: ), but basically I guess to see if they have any input about how my son's tonsils may play into all this. (recall we don't have high titers or recurrent strep, always negative cultures).

 

One thing that docs have noted when examining my son in the past is that he has large tonsils? not giant, and they don't seem to give him any problems, but they are on the big side for a little guy like him. Also, another thing I hve noted is that several docs, upon examination, will say "well his glands are a a little swollen".....this has been several times during the years, but that's as far as it went. sometimes I might hve been there because he had sore throat or thought he may have had strep and wanted the tests, but they were always negative, so I guess the docs just figured it was viral. again, it was nothing major and he didn't have any ongoing symptoms of anything we could see, so ...... he seems healthy on the outside.

 

my question is this. right now we don't have him on any abx, we did try twice, but I didn't see anything remarkable on a month of augmentin, and the switch to azith seemed to make his vocals increase. they were calmer off the azith, but by no means gone. only thing I'm giving right now is olive leaf, (my own experiment wondering about the viral connection).........I'm tempted to start abx again, and I can switch to another, but should I wait till this ENT visit to do so? if I start him on abx this weekend, and the appt. is Tuesday, would having him on abx skew anything as far as the doc being able to tell if anything is suspect with his tonsils, glands, etc.??

 

not that abx seem to help his tic or other symptoms, but I was tempted to do my own trial of upping the dose, but wonder if I should wait til after this visit.

 

advice on this? any thoughts re the big tonsils and chronically slightly swollen glands? anybody have this?

 

thank you

Faith

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Hi Faith,

 

We had an ENT consult back in November and just recently had t&a surgery. If he has been off antibiotics and your appointment is Tuesday, I would not start him on anything before you go - you can always start after. That way, if the ENT wants to do his own culture, you won't end up with a possible false negative. I would be sure to ask the doctor (as well as any doctor that is doing a culture), to check for all strains of strep - not just group A. We had doctors that were testing for group A only, which often came back negative. When we asked to culture all strains we have had many positive cultures.

 

When we went for the ENT consult, the doctor told us that all three kids had signs of prior infection, but only one of our three children had large tonsils. He would not normally have recommended removal, but he agreed to do whatever the neurologist was recommending, which in our case was to do the surgery on all three. When he actually removed the tonsils, he said they were much larger than they appeared on the exam in his office - most of their tonsil tissue was in the back, which he could not see in his office. In fact, they all had very large tonsils.

 

I am curious about the chronically swollen glands. Is there any bloodwork that can be ordered to try to figure out what is going on?

 

Debbie

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Hi Faith,

 

I am in the same boat. I just scheduled an ENT consult for my 6 year old b/c his tonsils are always huge. Long story short: My daughter had her tonsils and adenoids out when she was 5 b/c of chronic strep and they were always large (caused her to snore starting at age 2). The ENT said when he took them out they were very large and cryptic. After having them removed she was 100% symptom free for 1 1/2 years.

 

My second child had his tonsils and adenoids out at age 4 b/c of chronic strep and his were so large that it was actually causing sleep apnea. ENT said the same about his- very large and cryptic.

 

My third child started getting strep at age 2 and has always had large tonsils. For the past 2-3 years I have agonized over whether we should remove them, but his never caused sleep apnea. B/c I had more knowledge about PANDAS by the time he came around, I have treated him more agressively with antibiotics, but the reason I am considering removing them now is b/c all of my 4 kids were heavily exposed to strep over Christmas, but my two kids with tonsils had a big flareup in PANDAS symptoms and my two without tonsils seem OK. Even though my 6 year old is on daily Zithromax, I am really thinking that while he has those big cryptic tonsils, maybe he never fully gets rid of the strep. Anyway, I just want to see what the ENT thinks and go from there.

 

I think getting an ENT consult on your son is a good idea. If they say his tonsils are large and/or cryptic, having them removed may help him.

 

Good luck!!

 

Colleen

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We have seen our ENT on high dose Augmentin. We are still contemplating a T&A even though they are not "obstructing" his breathing. We also have the swollen glad issue. I am not sure the antibiotics will affect the size. I think you need an ENT that is familiar with PANDAS though.

If you can hold off, maybe try, but I am not certain it will make a huge difference? I would imagine it would be more telling if there was a positive response to antibiotics?

 

Hope that helps!

 

Brooke

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How swollen are his glands and for how long have they been swollen? What abs have you tried so far and for how long?

 

 

When I feel them I can't really tell, so I don't really know what is considered swollen. not big or obvious, no pain. Our new ped noted it on the two visits we just recently had a few weeks ago, and my son did have a sore throat, but we did the swab/culture and it was negative. Dr. Trif also noted it during his examination of him. just said his glands are a little swollen. and I'm pretty sure I've heard that a time or two before at our other pediatrician. I get the impression that they may always be like that, so I'm just wondering if I should investigate further being that he's also been noted as having big tonsils, and I am looking for something to go on re PANDAS, and well, I have nothing else, lol.

 

abx was augmentin for a month at 500 mg. 2 times/day.

azith was 250 mgs. once a day. (I did about 17 days and came to the conclusion that his vocals were worse off while on it and better while off it.)

 

he's 10 1/2 and about 52 lbs., a little guy. :unsure: since he seems otherwise healthy, I wonder if his low weight gain over the years can be considered a symptom?.....

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Hi Faith,

 

We had an ENT consult back in November and just recently had t&a surgery. If he has been off antibiotics and your appointment is Tuesday, I would not start him on anything before you go - you can always start after. That way, if the ENT wants to do his own culture, you won't end up with a possible false negative. I would be sure to ask the doctor (as well as any doctor that is doing a culture), to check for all strains of strep - not just group A. We had doctors that were testing for group A only, which often came back negative. When we asked to culture all strains we have had many positive cultures.

 

When we went for the ENT consult, the doctor told us that all three kids had signs of prior infection, but only one of our three children had large tonsils. He would not normally have recommended removal, but he agreed to do whatever the neurologist was recommending, which in our case was to do the surgery on all three. When he actually removed the tonsils, he said they were much larger than they appeared on the exam in his office - most of their tonsil tissue was in the back, which he could not see in his office. In fact, they all had very large tonsils.

 

I am curious about the chronically swollen glands. Is there any bloodwork that can be ordered to try to figure out what is going on?

 

Debbie

 

Debbie,

What were considered 'signs of infection'? did you go to the ENT because of the problems your kids seemed to hve or was it just to kind of see what was what and if there was any recommendation looking at it from the PANDAS angle.? I don't see that my son has any problems with his tonsils, no apnea, no snoring, nothing I can see. only thing I might note is that when he talks he sounds like he might have mucous in the throat, (not nasaly like someone with allergies or sinus trouble), altho he says he doesn't.

 

I will ask about the different streps and I too wonder about bloodwork in case there is something lingering, like a low grade who knows what?

 

havn't been tested for Epstein Barr, what type of bloodwork is that considered?

 

thanks.

Faith

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he's 10 1/2 and about 52 lbs., a little guy. :unsure: since he seems otherwise healthy, I wonder if his low weight gain over the years can be considered a symptom?.....

 

 

don't know what it's worth for you . . .

between 18 mths and 4 years, my son gained 10 lbs.

had confirmed strep at 22 months.

in his 4th year, overt pandas symptoms and treatment at 4.5 plus had food igg with over 15 reactions so we took him off all dairy, eggs and most grains. during that year, he's gained about 8 lbs.

so that year, he gained almost as much as the previous 3 when most kids are slowing a bit on weight gain at that age.

 

the kids that i know that i suspect could have pandas, are on the thin/little side. i think it's got to be related.

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he's 10 1/2 and about 52 lbs., a little guy. :unsure: since he seems otherwise healthy, I wonder if his low weight gain over the years can be considered a symptom?.....

 

 

don't know what it's worth for you . . .

between 18 mths and 4 years, my son gained 10 lbs.

had confirmed strep at 22 months.

in his 4th year, overt pandas symptoms and treatment at 4.5 plus had food igg with over 15 reactions so we took him off all dairy, eggs and most grains. during that year, he's gained about 8 lbs.

so that year, he gained almost as much as the previous 3 when most kids are slowing a bit on weight gain at that age.

 

the kids that i know that i suspect could have pandas, are on the thin/little side. i think it's got to be related.

 

smartyjones,

thank you, do you mean you went gluten free for him? I know sometimes kids (or adults) can be celiac and when they eliminate grains, they actually wind up growing and thriving better. do you think that is why he gained weight? what do you attribute it too?

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My 10 year old is 5'1" and 100 lbs..............my 7 year old is 4'5" and 70 lbs. I don't have litttle guys.

 

I personally don't think that is PANDAS symptom.....unless they have some kind of immune deficiency or anorexia as a symptom.

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smartyjones,

thank you, do you mean you went gluten free for him? I know sometimes kids (or adults) can be celiac and when they eliminate grains, they actually wind up growing and thriving better. do you think that is why he gained weight? what do you attribute it too?

 

the naturopath who originally did the test was afraid he could be celiac. we had a non-helpful pediatrician at the time and i couldn't do the celiac test before we took him off the grains. unfortunately too, we started the 30-days of keflex about a week later. so we've never had him tested for celiac - something we'll have to do in the future but i'm still not ready to put him back on the foods b/c i don't think he's 100% yet and he had an exacerbation in the past few months. i've read that if you react to many foods, it may more be a sign of leaky gut than necessarily celiac. i think his trouble with strep has caused a cascade of other trouble. although i now see things that could have been pandas earlier, he still had quite a sudden onset. i think if it was celiac, it wouldn't have been so sudden.

 

celiac is something we will test for but i don't think it's that. i believe the food issues are a symptom of the strep/pandas medical troubles. his symptoms improved but i attribute that to the keflex and he spiraled down when he went off that first course while still avoiding those foods. he is still avoiding them and has seen improvements on our treatment and exacerbation due to the flu. if the foods were a bigger cause, i don't think it would be so variable. i keep him on this diet b/c i do think for him at this time, it is a tax on his immune system that is obviously out of whack.

 

so, i believe the strep to be the cause. there was a post on here a while ago of an article that mentioned some study that there is an enzyme in the gut instrumental in digesting gluten that binds with strep. i think there's something like that going on. when we do see recovery from pandas, we'll have to add the foods and test but i'm hopeful that it won't be a life-long digestive issue - i think it's all related to the pandas. i think it's a combination of taking him off those foods and treating for strep that helped him to gain weight. he had strep 2.5 years before the behaviors and i think he probably never really kicked that initial infection, which he had at 22 months.

 

p.mom wrote that her kids are not thin. when do you think they got the initial strep? i wonder if that has something to do with it - the age on initial strep - maybe in the development of growth, digestion, something?

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I started to imagine mini golf balls. Still, any swelling isn't good. Have you ever seen white on his tonsil, like food remnants? It sounds very gross, but I have very big tonsils w/ deep caverns yet when I was a child it was the big "keep tonsils in, don't take them out" phase so they were kept in. Well, I still get food stuck behind my tonsils. It causes them to appear very swollen and I can see a visible mini bump as a result of it. But it's hidden, you cannot see it just when you look in the throat. That can easily turn into a hiding place for strep. A swab would never reach it unless they dug for it.

 

I wish I had my tonsils out as a child. They are such a nuisance now.

 

As for the weight issue, it could be related, but I don't think it's an across the bar symptoms. Hm. Mabve during until it's in recovery? Let me see, my son was always very tall and okay for weight. He got sick in Sept 08. he lost weight but because of eating issues related to PANDAS. When he entered recovery he gained the lost weight back plus 2 or so pounds. Then he reached a plateau in weight. In Sept 08 (before first exacerbation) he weighed 40 pounds. Sept 09 he weighed 42-43 pounds. It's been over a year since his first PANDAS excaerbation. Now, he is spurting in weight. He just gained 5 pounds 3 months! We appear to have him PANDAS under control. I also don't see to much of an increase in his food consumption. Interesting once I sit and think about it. My son now weighs 48 pounds. He just had it checked on Wed. Height always remained on the same curve. Around the 90% percentile. He was 8 lbs 10 oz when born.

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I don't think I see anything white on the tonsils, they just look a little bulgy, not humungous, but you can see them, and maybe some tiny reddish veiny thingies?

 

Vickie, how old is your son again?

 

my mother has always maintained that she thought my son was too thin and didn't seem to be growing, she nagged me relentlessly about it. I've brought this up numerous times to docs but can't get anyone to take me seriously, they'd rather see a skinny kid than an overweight one, his bloodwork always looks good (and I've gotten them to give him pretty much yearly bloodwork upon my request). really he never gained more than two pounds a year since he's a toddler. now we're not big or tall here, and I was quite skin and bones as a child, so they just feel its genetics I guess. even as I speak here, he is inside with breakfast in front of him and I have to prompt him every 10 minutes to eat, while he engages in everything else. Yesterday he ate cereal for breakfast, half of a knish for lunch and a few bites of homemade hamburger at dinner. I went off how he's going to get sick and not grow and I convinced him to eat another knish. maybe he had a donut in between. but what kind of appetite is that for an almost 11 year old boy? I don't get him. altho there are times when he acts very interested in food, but that's mainly when he's hungry and we go to his favorite restaraunt, the chinese buffet... :unsure:

 

also, I could see he was starting to cough the last day or two and now he's all stuffed up and has a cold. this is because he only will wear a hoodie type jacket when outside, so it was bound to happen with this cold weather here. I can see that his tics are definitely vamping up, I'm seeing some head movements along with the vocal too. so if this is related here, don't know.

 

I think I'm not going to give him any abx until we get to the ENT on Tuesday, this way he can see him as is. if there is any problem, don't want it to get better and the doc will say he's fine. this is a doc mentioned here on the board, so pretty sure he knows PANDAS, but not sure how liberal or conservative he is with the clinical picture.

 

and by the way, his laugh for some reason is really annoying me, like its changed somehow. anyone ever see this? its like when he laughs, its a full on really loud exaggerated cackle, he's done this sitting right next to me and damm near deafened me... :blink:

 

thanks so much for all your input.

Faith

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I don't see veins on my tonsils,maybe on my 2 kids that still have then? I can look later. My son turned 6 in Sept.

 

The hoodie thing. What does he do if you tell him to wear a hat instead or nothing on his head? Does he ever take it off when he's out of the house? I just have to ask becasue one of my son's things was always having to wear his hood while out of the house. Even in stores.

 

As for the eating, besides the Chinese buffet, have you "analyzed' what he does eat? Is it mainly food he prepared. Mainly cold food? Again, this is just a personal thing with me. My son had eating/food problems with exacerbation #2. I think any PANDAS child (or suspcted of PANDAS) needs to be watched when food intake seems lower than expected. With anorexia and other food problems associated with PANDAS, it can get scary. It took me a bit to figure out why he wasn't eating. I think I still don't know the full answer.

 

I'm glad to hear his gland aren't overly swollen. I read an article about some disease and it scared me. Sometimes it pays to read the newspaper, sometimes it makes you paranoid.

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