faith
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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
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Michael,
so are you saying that you showed antibody to mycoplasma p.? And basically if you treat with abx for a time, it should clear and your symptoms too? Is Biaxin the abx for mycoplasma?
I'm not clear on the chelation part, did I miss something?
Faith
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.........they meet at work............................
..........bwhaaahaaaaaahaaaa!..............
all italian here...................lemme have it if you want...
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worried dad .. I thought we had a good mix but your's trumped ours :-)
sorry, I can't resist...........have you heard about the polish carpool?
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If your child has a true autoimmune issue (as I believe mine does) and corn is a trigger (like a true allergy) then it is a long process of learning what has corn in it and keeping the child completely corn-free in order to get the antibody levels down to a manageable level.
what are the 'antibodies' that you refer to? splain pls?
Faith
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I see CBC on there, yes. (we have to go to a lab for this.).
off to the ENT now..........I KNOOOOWWWW...........
Faith
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on another note, he did say he treats with IVIG and PEX for some PANDAS patients (altho I get the impression his patients are mostly autistic, but not sure there), and he does think that it helps, altho it would be hard to get insurance to cover that. I mentioned that some were having success based on immune deficiences, and maybe it sparked something in him. not saying he is recommending that for us, but at least it gave him something to think about. Being that he is an immunologist/allergist as well, he did order an immuno work up for my son to see where he stands on immune deficiencies, as well as some other things like the lyme/epstein barr/mycoplasma, etc. that I wanted to get. My son initially showed a high level of manganese in his blood, so this is why I was consulting him in the first place.......
(how am I doin SFmom???).....
Faith
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Gat'smom,
could I ask why the DAN doc has 'thrown his hands up and won't prescribe"? just curious.
we were at our DAN docs office yesterday, more for a consult on some blood tests my son had recently, and I also wanted to pick his brain on PANDAS. This doc has PANDAS patients, altho he is of the school that titers should be high to show the strep connection. I asked about antibiotics and he said they are just for 'prevention' of strep. I asked 'what if the strep is somewhere in the body and "intracellular" and asked how you get at that, and he said "you can't".......
I'm not agreeing or disagreeing, just relaying what he said.
Faith
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trq,
that's a tough one about the private school vs. public. being that she is comfortable right now, I totally understand about not wanting to move her. Part of my son's ease in social situations is probably because he's known the same kids since kindergarten, so even tho some of his tic issues may be noticed, its his familiarity and longterm friendships that kind of save him. altho there will always be kids who might have something to say either in front of or behind someone's back, but I think the fact that my son has always had friends and is quite sociable himself from the start pretty much causes him to just blend in. I am inclined to agree that you may not want to rock that boat and put her in a situation where she will be 'new' and thus stand out, altho I also tend to think that at a young age that kids are not that focuused on other's issues, most go under the radar, and you'd be surprised how kids learn to adapt and tolerate other's differences.
But, I do think that even if a 504 is not an option at this time, then you should at least keep the teachers apprised to her situation with tics, ocd thoughts, and focus problems. Perhaps even without a formal accomodation plan, they may be able to set their own accomodations in place in order to compensate for her problems or issues--communication between you and the teachers/school is key here. just focus on her symptoms, don't get into PANDAS or anything complicated for them to understand. she has tics, and that causes her to try and hold them in and not be able to focus, she has thoughts of perfectionism/ocd, so that causes her to second guess and slow down, anxiety causes her to get distracted, etc. I don't know what the policies are for private schools, but I do think they need to be apprised of her issues in order to work around them. perhaps they will be able to loosely follow what you would get with a 504 plan, i.e. extra time for work/tests. the only thing is this will not be a legal binding for them. hopefully you will be able to work this out before she finishes grammar school and moves on to the higher grades.
Faith
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trq,
I can only tell you that my experience is exactly the same as yours, only my son is now 10. but we dealt with the same concerns of focus, but it was apparent for us that his focus has to do with his tics/ocd. So while your daughter is in second grade now, I can tell you that this will only get harder and harder as she gets older and the work gets more involved. I never did do meds, but what has helped, and I think you hve to consider this, is getting a diagnoses and either a 504 plan or IEP, whichever is appropriate. With the 504 plan, they can't hold her inability to focus or the time she takes against her. my son is the same way, what should take 45 minutes goes on for hours, but with the accomodations, he is allowed the extra time to do the work and tests, otherwise he'd never get anything doen timely. I don't know how much the teacher or school knows of your daughters situation, but if they are not apprised of it, I do think you should have a meeting with the teacher or school psychologist and get things rolling for that. All you need is a letter of diagnoses from your doctor or neurologist, just spell it out, the symptoms, tics/anxiety/add. you will probably have to have her tested thru the school to make sure there are no learning disabilities. Everything is confidential and it does not have to be told to anyone but the faculty, my son is not even aware he has a 504 for the past three years, he just knows they give him extra time, altho now that he's in the fifth grade, so he is becoming aware that he has these problems and that they are interfering with his work.
Please feel free to ask me any other questions or if you need further guidance.
Faith
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Just to update, concerning the liver function results that I listed above, I had an appt. with our DAN doc (he's also an immunologist/allergist) and he didn't think those numbers were concerning at all. (but of course, I wonder).
I also mentioned elsewhere that my son came up with a high level of manganese in his blood testing, so we are still looking at that aspect, the DAN ordered a repeat along with other metals and we'll go from there. I'll keep you posted on that topic.
Faith
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Hi bmom,
what was the reason he gave? how is your son doing presently? was he one to get strep in the past?
Faith
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Caryn (or anyone else)
did you ever have any liver function test results on any of your son's bloodwork over the years? I ask because recent bloodwork shows my son's AST level at 41, with the normal ref range being 10-40. so not terrribly high, but up there in the range. the other liver function is the ALT, and that is fine in the mid range. The doctor isn't really worried about it, but I alsomentioned that they also found a high level of mangangese in my son too. we don't really know what this means yet, and we hve a couple of appt. this week to see if anyone does know what this may signify. this doctor said he's never had a child come up high before, so he doesn't know what they would do about it. ..... so just wondering about the liver aspect, if anyone has had numbers out of the range for AST or ALT, those are the liver tests.
I hear you fine about the corn, don't know if you've followed some of my postings, but my guy is off the chart with weight, so dietary right now is a really hard thing for us. I think his issues are more tangled up than just dietary or I would have seen some positive results all these years.
thanks for any info.
Faith
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hello Tigger,
my son presents similar to what you are describing re onset, tics and ocd coming on, altho he is a bit younger, 10. I am also looking to see if PANDAS is a possibility, and my problem is that I don't have but one documented strep that I know of, but it is believed that subsequent illness and virals can also continue the cycle of exacerbations due to illness/infection.
If I were you, just go ahead and have some testing done, see if she has the high titers and hve her throat swabbed and cultured just to see where you stand, you never know. Did she get strep in the past that you are aware of? do you recall what kind of illness she may have had right prior to her starting her first tics? you could alway do a trial of antibiotics to see if it has any effect.
Also, what about vaccinations, you say that she is now 12? could I ask if she's had recent vaccine boosters that are required at this age? this could be a contributer, some have noted their kids getting worse after vaccinations.
Does she have now or in the past any other issues or symptoms, irritability, separation anxiety, sensory, temper tantrums, etc.?
Faith
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Hi CP!,
he pretty much eats like a bird, but sometime eats normally, but not the way I see other kids eat.
Your son's tonsils were big, now I forget, but did he have problems due to it? or was this just to see if it helped any with the vocal?
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Debbie,
Hopefully this doc will be able to give me something to go on. but at least you have a child that gets many strep, I havn't seen that. if he does have it, its not being detected. you have hd positive swa/cultures and/or high titers? in your ENT in NY?
I just want to add for anyone else, that I have gone the route of natural, no meds, dietary, supplements, allergy, kinesiology, chiropractic, I've explored every angle. .. yet here I still am, so maybe there's a clue right there....
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Vickie, you have a point there, I guess if I was reading these from objective view, I would probably see it more clearly. I definitely see the symptoms, they are all there and have always been (even tho I didn't really look at things like separation anxiety as a symptom, but it was there big time). I just don't understand why we have no evidence of strep, that is what makes me insecure. I wish like anything that I had not dropped it back when he was 7 and did have the strep, but we did go to Infectious Disease doc who knew all about PANDAS and being that our titers were low, we were sent on our way, the rec was "no further indications re PANDAS at this time."
The hat thing. yes, there is more to it. I don't know if it is exactly sensory, I'd actually say more 'obsessive'. ... now that I think of it, the clothing thing may also be a way to cover up his skinnyness, because he wears everything large and baggy, but it is also sensory, because he complains about pants that 'get hair on them', he didn't like zippers, or if the jacket has a 'rough' interior. .......
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tracyree,
did he ever have that before? the rages? how did he do the first six days, or did it start right away? What part of the country are you in?
I will add here that I don't think my son did well on azith either. I did about 10 days and didn't see anything remarkable, and had two days inbetween filling the next script that he didn't get a pill. I actually thought he did better on those two days. not wanting to break the trend, I got the next refill and gave him the next pill. the next day his vocal was off the wall increased, no exaggeration. I then didn't give him the next pill and he was calmer the next day. so for now we are off abx until I try another one.
Faith
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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...
My dd8 laughs when she does not feel well and it's a very specific laugh. When she explains PANDAS to people, that's one fo the symptoms she describes. Her's sounds different that the way you describe your son's but it is very loud and very annoying!
Susan
oh goody, someone else has a loud laugh.... he does have a cold right now, and had a sore throat a couple weeks back, it kind of started around then I guess. Susan, this is so loud and annoying that I can't help but tell him so-- I told him to knock it off, you sound like a hyena!....
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He thinks the infection resides mostly in the gut.
do you mean the strep infection? do you mean just in an adolescent or for any one with pandas?
Yes strep.... he said strep could be any where but likes to harbor in the gut.
-Wendy
but would you have to have symptoms to suggest that?
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hello bev,
what is scenar?
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hi tricia, welcome,
could I ask what things you may have done in the past to try and manage her tics.? has anything changed before she started waxing on these tics? does your daughter have any other issues? was she sick recently? what is a FP?
There's alot of information here, so read as much as you can. it gets a little confusing too, so try to focus on one thing at a time. What are your daughters tics?
Faith
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I really wish I could figure this guy out too. I'm thinking maybe I should see an endocrinologist and see what they say.
Faith
faith - can you remind me why you think it's not pandas - or why you're unsure. when i read what you write, of course i'm no expert but it sounds like pandas to me. he had high cunningham #s, didn't he?
kathy
I don't really know. probably because he's had these symptoms since 3 1/2 (he is now 10 1/2) so I've always looked at him as tourettes with comorbid issues. I've not really seen a full on 'exacerbation' from strep but one time when he was 7. he only responded to abx that one time, subsequent trials didn't really alleviate his tics (altho they were only 10 day courses) I was always focused on the tics I guess and its only since these past few months that I realized he has all the symptoms reported here. since that early time, we've waxed and waned, but have never had another documented strep or high titers despite several different testing over the years. As far as illness, he gets a virus with fever, maybe some vomiting maybe once or twice a year, but it lasts but a day. I understand that it is said that it may be one strep that sets it off and virals could do the rest,but I guess if I had either positive strep or the high titer, one of the other, at least I'd have something to go by. what if I'm just reaching? I realize the docs we've seen are okay with treating as such, but I guess I just don't feel like anyone has sat me down and said "your son has PANDAS and this is thre reason why" they didn't dispute it, but rather went along with it. does anyone else feel this way? .....I think we have to admit that these docs don't really definitevely know, one of them has even said its a hard diagnosis to make. guess because I'm entering this game kind of late, I have alot of lost years in the beginning where I didn't look at everything, and all the symptoms, and how it might relate to illness. back a few years, the criteria was 'sudden onset' and I couldn't relate to that, how could you when your child starts blinking and ticcing at 3 1/2? you pray and they go away for a while, but then they come back. over the years, I could never really put him in one particular box, it seemed he had everything, yet not enough of each symptom to label him x or y or z. .... his cam k was 179.
I'm sorry I'm so difficult....
.................(okay that's the wine talking........ ) I appreciate your input.
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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.
He wears a hoodie everyday, but he also wears a hat everywhere with it, its just the look and feel of the jacket with a zipper that he likes. we have a hard time getting him to lose the hat, its either those baseball caps with the straight rim and they wear it slightly off the the side? (eye roll) or he has a knit cap for the winter that also has the rim. I think part of it is 'the look' and being 'obsessed' with the look, and part is the comfortability of these type clothes for him. there is nothing he just puts on like its no big deal, its all kind of part of his quirks and obsessions, the hat, the hair, the jacket, the t-shirt, the pants, the socks, and the type sneakers, right now its heely's. oh and now its the underwear! suddenly its gotta be boxers. all of this could really drive me crazy if I tried to change it up.
I would say he goes in spurts where he likes to eat, and then he falls off and goes for a time where I see he's not eating much. I don't think I've really tracked the times this goes on, but its been this way since a toddler. You may have something there, maybe these times not caring about eating do correlate with exacerbations, but the thing with me is that prior to hanging around on the PANDAS platform, I mainly focused on tics, that was what I was vigilant about, so I may have missed alot of stuff. I havn't been good about journaling either. he's kind of all over the place, he seems okay with take out like taco bell and pizza, but won't eat pizza they make at school. mostly eats thing like pasta or soup that I make. can't tell you how much he doesn't really care for. no rhyme or reason. most normal dinners I have to prompt him to eat, its always been like that, even up til a few years ago, I was the mom following her kid around with a loaded fork trying to get him to eat. At one point when he was younger my mother tried to tell me he had an eating disorder.
it was kind of funny hearing it in her little italian accent, I didn't even know she knew what an eating disorder was!..I really wish I could figure this guy out too. I'm thinking maybe I should see an endocrinologist and see what they say.
Faith
.................(okay that's the wine talking........
Advice for ENT visit
in PANS / PANDAS (Lyme included)
Posted
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?