ajcire
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Posts posted by ajcire
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Vickie, thanks for sharing that link. Interesting... seems to stress the mood changes a lot. My son doesn't present with the clear ocd things or major tics so it makes it hard to find anything appropriate... but the mood changes and over reactivness to things that shouldn't get such intense reactions... that he could relate to. Wish I could see a few more pages to see if I really thought it would be appropriate for my son or not.
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Peg, My son's were all elevated. What would treatment be based on that? I know, real good for me to be asking this a year after I had the results. My son presents very mildly and I have been very hesitant to do anything that will rock the boat so to speak.
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Does anybody know what she means by she is more interested in the antineuronal antibodies? I had this done almost a year ago and my son's camk was 141 and all the other things came back elevated but I really had no idea what the heck to do with that information.
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I was just matter of fact.. told him the dr. was going to try to help us figure out why he had to clear his throat so much and why he was all of a sudden so afraid to sleep alone at night. My son was 7 when I took him last year.. he has no idea he has pandas because it's just so mild that it never warranted an explanation. He did ask me why he was having his throat swabbed once when he didn't have a sore throat and I had to explain that he was clearing his throat a lot and we thought it might be because of strep throat and he just doesn't get sore throats.... He was satisfied with that and never asked me anything more about it. When I saw the dr. I saw for pandas he had a waiting area with some things for my son to play...he spoke to my husband and I and then called my son in to do an exam. Sometimes I think we make things a bigger deal and worry more than we need to. I would just see how it goes and answer your daughter as it comes up.
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Vickie, I thought I was the only one with a kid who ate chicken nuggets the same day as the surgery.
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Bet it feels GREAT knowing those infected messes are out! Our ENT said the same thing about my ds's tonsils.. my son had never had a sore throat before but did have positive cultures... at first glance the ent said they looked fine.. that was prior to taking them out.. when he took them out he said they were an infected mess... good riddance. He said often people think that just because tonsils are small they are fine but he said my ds's were small because they were shrilled up infected messess.. that often the smaller ones are just all squished. I can't say I see a difference in pandas symptoms with my son since having it done but since having my dd's and my ds's tonsils out (both lots of positive strep cultures) we have not had strep in the house.. that's since March.
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Tampicc, you described a lot of things I also saw with my ds at that age and some still continues.. but just like you described it does not impact his life really and to anyone watching from the outside he is just a very bright child and bright child often seem quirky... Knowing what I know now I do attribute it to pandas.
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My ds's camk was 141 when I had it done. Dr. Cunningham told me that it fell in the mid pandas range. (I get that it could still be lyme, just mentioning where she said it fell if it was pandas)
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But remember....lots of people get hiccups... I have randomly gotten an annoying case of them... as have all of my kids.. pandas and not pandas. I mean sure, my pandas ds had them recently for a good portion of the day. I could read into it and say wow my pandas kid gets hiccups too but really everyone gets the hiccups.
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Ditto the others... the ENT said at first glance my son's tonsils looked fine... once removed they were a shrivelled up infected mess that definitely were better off out.
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I think it would be dangerous to open that line of thinking with the scenerio and details we know on this story. Next we will have other criminals looking up their history of strep to use it as a defense.
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Regardless of if it is or is not pandas... I still believe it could be irrelevant to her pre-meditated act of murder. I would not like to see her get off on this because of a pandas diagnosis. At least not just based on the info at hand.
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Vickie, I had the same thought as you. This was not a rage.. this was a pre-meditated act. I do believe that even if she has pandas (which really, is a big presumption at this point) that it doesn't mean it had anything to do with what she did. Sometimes people do bad things. Serioiusly, regardless of it's pandas or not.. obviously whenever someone does something like this they are not dealing with a full deck... doesn't make it any less awful.
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My non pandas daughters was 101.9 a few days after her surgery. She had not been taking any tylenol or pain relief because she had said she felt fine... so she was only on antibiotics at the time. The ENT told me that he suspected that most kids at that point were still having tylenol round the clock so their fevers were just masked and that since she wasn't needing the tylenol that we saw hers... He said to make sure she was drinking adequately and that I should just keep an eye on it. The fever lasted a day or 2 and then she was just fine. The nurse called me the next day after my call about the fever to check on how she was doing. It is weird for the ENT to say that about the antibotics. My ENT wanted to be very clear when he took out my pandas son's tonsils that I knew that while it would greatly reduce the odds of him getting strep it by no means was a guarantee that he wouldn't get strep.
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edited cause I changed my mind
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I would think you can't just go by one titers check but that you need to recheck them too because if you are exposed to or had strep within a pretty large window of time your titers could still be elevated even if you are not a carrier if I am understand correctly,
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I did...My ds never got sore throats but had lots of positive cultures. I don't regret it because the ENT said his tonsils were a shrivelled up infected mess and that it was good they were removed(hency why they looked small and they originally felt they didn't need to come out)... BUT the anesthesia really had a bad affect on my pandas ds for a full week after. I didn't see this in my non pandas dd who had hers out due to chronic strep. I was really freaked out for that week wondering what the heck I had done to my son but then like a switch he just was fine. I can't say if it had helped or not with the pandas symptoms.. He's mild which makes it less obvious. Neither have had positive strep tests though since having them removed and strep had been a big problem in my house.
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It's hard to answer. I assume you mean in hindsight so if my ds presented with an eye blink at 2 but I was told it was nothing and then at the age of 6 I pieced it all together and he was on antibiotics that it was a large gap of time from initial onset. If I go from the night he stopped sleeping alone and started having wonky meltdowns it was just a few months. I am guessing though that I would answer that it was 3 or more years? I didn't answer the poll yet as I don't want to mess up your collection if I am not understanding right.
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Both my pandas ds and my non pandas dd had theirs out. My non pandas dd went first and I had talked to the ENT at that time about pandas (he was great, took his computer right out to see what it was as he had not heard of it)... When I asked about antibiotics he told me that it was standard procedure for him to use iv antibiotics during the surgery and to prescribe one weeks worth of antibiotics for after surgery. He agreed for both my kids to do a week pre surgery antibitics as well because I had a few concerns about my non pandas dd as well. I really am surprised that your ENT does not use IV antibiotics during the surgery just as standard procedure and is so unwilling to do so for you.
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If your child is getting a strep rash than that doesn't sound like she is a carrier... a strep rash is a strep rash isn't it? I thought a carrier was someone who actually showed no symptoms. My ds cultures positive but doesn't have sore throats or fever. The dr. suspected he might be a carrier but at the same time he does show symptoms... (pandas symptoms, just not classic sore throat symptoms) so I never fully understood... plus when he is given the regular strep dosage course of antibiotics and then recultured later he does test negative. I guess it's not really important what it's called as obviously for some reason she can't seem to get rid of the strep but just was confused as to if that is really considered a carrier?
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I don't question that these doctors are skilled. I think though that you have to remember that the same was said about the pandas experts... that they were very skilled and had the training and expertise and clinical experience to diagnose those with pandas... so now when some of those pandas turn out not to be pandas it makes me wary.
I don't say that negatively or with any disrespect. It's just something that sits in my mind while I watch this unfold.
No wonder there's so much diagnostic confusion... and why us paranoid parents don't get much sleep!
I just want to add that while I appreciate that there might be a lot of diagnostic confusion that goes on amongs us here, I just have to put in the word that most of these lyme doctors are very, very skilled and have the training, expertise and clinical experience to diagnose people infected with lyme and other infectious pathogens.
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Have the majority of kids here who have tested positive for lyme already had ivig?
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Elizabeth, I respect the parents who have the struggle of sorting out lyme. I do however think that it is important for people to know that they are not the only ones who are questioning some of this. I think that it is important to remember that with everything if you believe in it you will feel strongly about it but it just doesn't make things all fact so it makes sense to question it. Totally an off topic example.... I remember with my oldest being nervous about one of the vaccinations and questioning my pediatrician. He responded with that he could show me piles and piles of research saying it's safe. I responded with that I could show him piles and piles of research saying it's not. Which one of our piles was right? I have no idea. I question both our piles.
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PhillyPa, I think you are only saying what a lot of us are feeling regarding all of this.
from the mouths of babes
in PANS / PANDAS (Lyme included)
Posted · Edited by ajcire
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