question about those dark eye circles and adenoids

[faith]

FYI all, just want to point out that T&A is NOT the protocol for PANDAS just to 'see' if there is strep in the tonsils. that is just a gamble, it has not been proven effective even on kids who regularly get strep and sore throats. you don't just get the tonsils out just to see unless there is adequate reason. I don't want anyone getting the idea that is fact. It has helped some who regularly get strep, but not all.

 

ajcire's daughter is suggested for T&A because she gets strep often, she is not the PANDAS child, but they are weighing in if that child is infecting the PANDAS son.

 

my son is suggested strictly for the large tonsils and breathing and considering the 'failure to thrive' due to his light weight, it was not based on anything regarding PANDAS, if not for this, it would not have been suggested, we have no strep or titers to warrant it.

 

just want to clarify that for other posters.

 

Faith

[peglem]

FYI all, just want to point out that T&A is NOT the protocol for PANDAS just to 'see' if there is strep in the tonsils. that is just a gamble, it has not been proven effective even on kids who regularly get strep and sore throats. you don't just get the tonsils out just to see unless there is adequate reason. I don't want anyone getting the idea that is fact. It has helped some who regularly get strep, but not all.

 

ajcire's daughter is suggested for T&A because she gets strep often, she is not the PANDAS child, but they are weighing in if that child is infecting the PANDAS son.

 

my son is suggested strictly for the large tonsils and breathing and considering the 'failure to thrive' due to his light weight, it was not based on anything regarding PANDAS, if not for this, it would not have been suggested, we have no strep or titers to warrant it.

 

just want to clarify that for other posters.

 

Faith

Good point, Faith! My daughter had hers done just to try to eradicate the strep. It didn't, and because we didn't quite know what we were dealing with and only gave one follow up course of amoxicillan (the ENT who did it did not even believe PANDAS was possible), we ended up with the worst exacerbation ever!

[ajcire]

I could be wrong here but I am guessing she means a second dd, not her 2 year old dd... at least that was how I read it.

 

 

Regarding why we would be doing the Tonsils and adenoids... My daughter (almost 6 yrs old) has had an excessive amount of positive strep cultures with sore throat symptoms as well as sore throats without being positive. She has NOT been diagnosed pandas but I have some definite concerns about pandas with her. I did not take her to the ENT because of that though.. I actually didn't take her even just because of my pandas ds. One of the pediatrician's I had seen suggested it based on the frequent strep. Knowing what I know from all you guys though I am definitely suspcisous that her unexplained tummyaches for the past year connected to the strep but my peds don't really by my theory. When I asked the ENT if it is what he was recommending I do he was careful with his words but said that she definitely meets the criteria which makes it easy for him and that the benefits outweigh the risks in her situation. I am waiting for results still on strep titers I had run on her a week and a half ago... her titers were 120 in early december (not sure why I did them again now but the dr. I see for my pandas ds suggested I do it) but she had strep in september and Nov. 1 so from my understanding her titers should have been high from the strep in Sept? My pandas son's titers in November were 480 but he too had a positive culture in Sept.

 

I spoke to the ENT regarding my pandas ds (7 1/2 years old) because he cultures positive for strep but without sore throats.. he gets the mild tics and wonky behavior instead.... I just want to see if he sees anything going on that can shed light on this. He has always had the dark circles under his eyes as well.... His voice is not nasaly like my dd's so I never suspected enlarged adenoids but who knows.. This might be a total long shot taking him but I figure it can't hurt.

 

We do not know if my dd is the one infecting my pandas ds or if he is infecting her since we don't always catch when he has it until she has it. I always thought she was giving it to him.. until it was suggested that it could be the other way.... BUT she has still tested positive a few times that he hasn't... so she clearly seems to get it easily.

 

I didn't schedule my dd's surgery yet because the appt was just yesterday and I first had to talk it over with my dh and then want to get my son in first to be seen on the off chance that it is recommended that he too have it done... we need to decide if it's best to do them at the same time or not... Anyone have this done for 2 kids at the same time? We have decided to definitely proceed with this for my daughter.

 

 

 

Now I just read what you wrote Peglem and honestly that scares me a lot! What if I open the floodgate to my daughter. I don't know anymore what's right. The ENT did warn us that she could still get strep throat... since it's not tonsilitis we are dealing with that removing tonsils doesn't necessarily eliminate the strep.. ack.. I worry that she is on the verge of pandas and that the tonsils out will now mess with it... grrr...

 

The ENT said the adenoids were just standard to remove at the same time... do they always do that?

[thereishope]

My ENT said for his set of doctors it is standard protocal to take adenoids when taking tonsils to avoid a possible second surgery.

 

Yes, there still isn't enough info to back taking tonsils out to try to prevent future step and from what I last heard, it is not standard protocal following a PANDAS dx. However, with the ENT I saw, for them they consider it their own rule. Granted, a parent can deny surgery if they are told this and they don't want surgery. I know there are PANDAS kids out there who still get chronic strep post t and a and my son got strep a month after surgery. So, it becomes a personal decision. For me, I have large tonsils and I wish I had them out as a child. I also thought for my son it was the right decision esp since I live in an area where they do not believe in proph abx. I saw it as his chance to try to prevent numerous future strep infections. I'll never know if it is preventing strep or how many times it will prevent it, if any.

 

There are things I would do different regarding surgery.

 

I would get it done at the very end of the school year or very beginning of summer. That way surgery is done at the off seasonof strep and if an exacerbation should occur, it would happen while he was not in school.

 

I would have asked for more abx post surgery and a different antibiotic than what was given.

 

One mom said she had a script for a steroid burst at her disposal if an exacerbation should have occurred post surgery.

 

Also, my 2 non PANDAS kids still have their tonsils. Even my oldest, who the ENT saw years prior and said he had large tonsils, did not say he was a candidate for surgery, even though his tonsils are huge.

[swim]

My son gets the dark circles when PANDAS symptoms are elevated. I know what ernestfamily7 means when you say you can just look at their eyes and know they are a mess. Funny you made this post now as we just found a 1 centimeter cyst on our son's adenoids two days ago when he was in for an MRI for an unrelated issue. Our pediatrician suggested that maybe strep could be "hiding" in the cyst. Of course, I am anxious to have the adenoids removed and have the cyst looked at. Unfortunately, we have another medical issue to get closure on before we can address the adnoids, but I am hoping we can address the adenoids SOON!

 

 

Can they tell if there is strep in the adnoids after they take them out?

 

Not sure if they can, but I think our pediatrician is very curious about the possibility of strep being in the cyst. I will talk to her about testing and I am sure she will do whatever she can to find out.

 

I am anxious to move forward with this, but I am being told we have to resolve another issue we are working on - our son was diagnosed with Horner's Syndrome (unequal pupils and a drooping eyelid). The cuase is some interruption in the nerves going from the brain to his eye. They are trying to figure out what is causing that. My gut tells me it is all related to PANDAS, but there is no medical tie to Horner's and PANDAS so I am trying to be patient.

[sf_mom]

You may know our story.

 

Older son who is 5 1/2 was diagnosed with PANDAS after sudden on-set in June and we now believe our 2 1/2 year old twins are too. The twins both have immune deficiencies, we've already tested our little Boy and his CaM is 148.... we are still anxiously waiting for CaM results on our little girl. Similarly, we are testing the entire families ASO and Anti-DNase-B and will treat accordingly if they are elevated. We do not intend to do T & A's at this time but will in the future if we can not get beyond PANDAs. Also wanted to add that all our children were exposed to a child who had RF and another child who also had active strep at a playdate in 2007..... all appear to be PANDAS.

 

I always go back to IT THE STRAIN!!! I'm exhausted but its now very clear we have to get our entire family better.

 

-Wendy

 

 

 

When we met with Dr. Latimer, last week, she suggested that we have the tonsils and adnoids removed, asap. She also confirmed that they would be sent to pathology to check for strep. We go back to Georgetown next Tuesday to do the consult with the pediatric ENT. I am now struggling with the idea of having dd2's removed as well. She has also been diagnosed PANDAS by both Dr. Bouboulis and Dr. Tifiletti, (had the aso rise but has presently with only moderate ocd, weather fears, anxiety and body imaging) We are anxiously awaiting her Cam score from Dr. Cunninham's. (due back any day now). BTW, dd2 always gets dark circles...

 

I went today with my dd... he said she meets all requirements for the tonsil and adenoids being removed..

 

I had an interesting conversation with him regarding everything... He was completely unfamiliar with pandas but very open to the idea of it... I was very sad that ENTs who see kids for too much strep all the time are not familiar with it... If he didn't believe in it but had heard of it that would have been less upsetting.... He had his computer and did a search and as soon as it came up he said it was very interesting to him.. that he had an adult come in for her tonsils out who had ocd and she had binders and binders of info regarding strep and ocd.. but never did she use the word pandas I guess.. maybe because she is an adult... he told her to call and let him know if it helped any (she must have said this is why she wanted it) and he said she never called.. but she was so ocd about it that her not calling could have been a good sign that maybe she wasn't so ocd about it still

 

That said the nurse or whoever the person who first talked to us at the ENT was asking questions and I mentioned my pandas ds who was not with me... she had not heard the term pandas but when I talked about his throat clearing tic she said WAIT we had a child come in for frequent strep and who kept clearing his throat but we couldn't find a medical reason... I think she had a total lightbulb moment about some patients of theirs and I felt good that they were a bit intrigued. I will be taking my ds in to be checked soon.. OH and when I asked if he would put my dd on prophylactic antibiotics before he said just to remind him prior because he usually only does that for after surgery but he understood why..phew.. AND even though he had not heard of pandas he said that he definitely thinks her constant tummyaches could be connected and that he has had parents report to him that their kids tummyaches were better after.... CROSSING MY FINGERS... Of course he said that this doesn't mean she can't still get strep but that the benefits outweight the risks for her to have it done...

 

Another interesting thing was that my dd's tonsils are pretty small.. he actually said that is quite common for kids who get strep and throat infections and that once out we might see they are just flattened.. he also said that her pain tolerance for it is probably so high because of the frequency which is why when I got strep I was in such pain and she just says once that her throat hurts and then goes on her merry way. He said she has likely just gotten used to it.

 

He didn't scope her adenoids.. said that it is standard to take them out too... My son will need to be scoped though since not sure his tonsils coming out is going to be a clear cut decision... .. he won't be a happy camper.

[laurenjohnsonsmom]

yes, you are correct P.mom! I was refering to our 2nd daugter (10 years old, not 2).

Sorry, for any confusion..

 

Our older daughter was sick 23 days, last school year with uri, throat issues. It makes since to have her t&a removed to help prevent future infections. Many of the PANDAS doc tell me they believe that's were the strep hides..

 

Yeah...I was wondering the same thing...and the symptoms in a 2 year old (body imaging)...then I thought...maybe she meant dd2 as in dd1 and dd2. Maybe.....

[earnestfamily7]

my DS9 had T & A in Nov... major exasperation after surgery... maybe that is where his strep was hidding.... on he plus side - we finally got it under control and he is doing much better now... not baseline but close

 

now- we need to get my little girl back