ajcire Posted October 16, 2009 Report Share Posted October 16, 2009 Not sure if you have already come across this.... was searching youtube and came across it. http://jamiesstory.wordpress.com/ Link to comment Share on other sites More sharing options...
peglem Posted October 16, 2009 Report Share Posted October 16, 2009 I guess my kid could be the poster child for what happens when PANDAS starts early in life and isn't treated.....because when that happens, its definitely not as simple as antibiotics! Don't get me wrong, PANDAS needs the press...just that titer checks and abx may be the answer for some kids, but so many need much more aggressive treatment and those of us who have been dismissed because of low titer counts...kinda feels like that's happening all over again. Link to comment Share on other sites More sharing options...
ajcire Posted October 16, 2009 Author Report Share Posted October 16, 2009 Oh I know. I was thinking the same thing when I was reading it.... and that if someone who knows my child and saw this they would think I was crazy for thinking my child has PANDAS because he presents so much more mild and just different than those stories. Link to comment Share on other sites More sharing options...
peglem Posted October 16, 2009 Report Share Posted October 16, 2009 Oh, I was just coming back to apologize for my snarky reply...my daughter has been pretty ill all week and the last 2 days so overcome with the OCD that she's even less functional than "normal". I'm in no mood to hear about other people's easy answers....but in my heart, I'm really happy for those who do have easy answers, and envious. This has been going on for all of my 15 year old daughter's life...it was dx'd as autism at such a young age and hence this sort of thing is considered normal for her by most professionals. Link to comment Share on other sites More sharing options...
ajcire Posted October 16, 2009 Author Report Share Posted October 16, 2009 Peglem, no need for an apology. I debated with myself before posting it for the very reason of how simple they are making it all sound. I am fortunate that my ds's issues are really quite mild and so subtle that I am starting to doubt myself sometimes... but I do feel very certain this is what my ds has. It does seem like it is easier for those whose kids are older when this comes on suddenly in the sense of at least they really can see the problem... I know this supposed to be a sudden onset but the sudden onset for my ds was subtle things that I only recognized in hindsight... I mean, we all joked when he was hoarding garbage and blew it off... I didn't know what I know now. Link to comment Share on other sites More sharing options...
peglem Posted October 17, 2009 Report Share Posted October 17, 2009 I appreciate the understanding. Link to comment Share on other sites More sharing options...
ajcire Posted October 17, 2009 Author Report Share Posted October 17, 2009 I can't even imagine how hard it is to get the right attention on this from your doctors when she also has the diagnosis of autism. I am sure it is easy for them to brush things off as just part of that even when you know as her mom. I taught special ed prior to having my children and my class was made up primarily of children with autism..ages 13-15. I was just talking to my assistant from when I was teaching about all this. I can think of 3 of my students who if I knew what I know now I would have suggested they just rule out any possibility of strep being an issue.. just because what would there be to lose to check into the possibility versus what could possibly be gained. It's been over 8 years though since I have been teaching though. I would be a much better teacher in general now after having kids of my own and after now being frustrated trying to figure out what is going on with my own child. Link to comment Share on other sites More sharing options...
peglem Posted October 17, 2009 Report Share Posted October 17, 2009 I can't even imagine how hard it is to get the right attention on this from your doctors when she also has the diagnosis of autism. I am sure it is easy for them to brush things off as just part of that even when you know as her mom. I taught special ed prior to having my children and my class was made up primarily of children with autism..ages 13-15. I was just talking to my assistant from when I was teaching about all this. I can think of 3 of my students who if I knew what I know now I would have suggested they just rule out any possibility of strep being an issue.. just because what would there be to lose to check into the possibility versus what could possibly be gained. It's been over 8 years though since I have been teaching though. I would be a much better teacher in general now after having kids of my own and after now being frustrated trying to figure out what is going on with my own child. I used to teach regular ed and I can think of 4 children who I'm pretty sure had PANDAS-knowing what I know now, of course. Link to comment Share on other sites More sharing options...
ajcire Posted October 17, 2009 Author Report Share Posted October 17, 2009 I have a feeling that if you go into most regular ed classes and really started to look at this that there would be at least 1 potential case of this in each.... unfortunately I think how common this is, is being totally missed because it's such a broad range of degrees of symptoms. Link to comment Share on other sites More sharing options...
EAMom Posted October 17, 2009 Report Share Posted October 17, 2009 I guess my kid could be the poster child for what happens when PANDAS starts early in life and isn't treated.....because when that happens, its definitely not as simple as antibiotics! Don't get me wrong, PANDAS needs the press...just that titer checks and abx may be the answer for some kids, but so many need much more aggressive treatment and those of us who have been dismissed because of low titer counts...kinda feels like that's happening all over again. You know, I thought the same thing when I saw the video...that boy's presentation was so simple and obvious (vs. a child that presents with rages or bipolar behavior or some of the other things on this forum!)....and responded so easily to antibioitics (I'm assuming she just did one course? did he ever relapse?) It was interesting to see the video but it really oversimplified the situation. This is what PANDAS looks like....and here is the solution as "antibiotics" flash accross the screen. I agree, what about the kids with low titers? What about the kids that don't get better with a simple course of amoxicillin? Are these parents going to stick by their guns or say, "well, it must not be pandas if the antibiotics didn't fix him?" Link to comment Share on other sites More sharing options...
faith Posted October 17, 2009 Report Share Posted October 17, 2009 The really annoying thing about this is that this story is from 2001? It was so "simple" back then? So why is this all so complicated for all of us in 2009? ... You know, I'm not even gonna say anything else. this is what I was trying to convey on that thread about 'twittering'. If there are doctors out there that were/are "aware" of this something called "PANDAS" this many years ago, then why is it such a deep dark secret amongst the medical community still? Again I say, DIDN'T THEY ALL GET THE MEMO!!........ Faith Link to comment Share on other sites More sharing options...
Stephanie2 Posted October 17, 2009 Report Share Posted October 17, 2009 The doctors are lead to believe that PANDAS is 1 in 2000 so it is not at the top of their list of things to rule out. Plus, I have to say that I didnt' know that the strange things that my child was doing fell into OCD rituals and compulsions (until my son's OT brought it up to me). So, if the parents are not bringing up OCD/Tourettes to the doctors... That's why we need to start with the parents. If the parents are educated, then they can diagnose the disorder in their own child and then go to the doctor and demand treatment. THAT is when the docs will get on board, when the parents demand that they do... It sucks that we have to be in charge of our own health care, but that's just the way it is... I remember a year ago...my son happen to NOT be in a pandas exacerbation but he was acting crazy (rages, tics, etc...). After being told that my son is bi-polar, I did some research and found out that Singulair and Zyrtec cause these symptoms. My son was on BOTH. When we removed them, it all went away (until his next pandas episode...sigh). The docs were ready to put my kid on a mood-stabilizing drug, when all he needed was to stop the singulair/zyrtec. The docs are just misinformed... We have been screwed by mainstream medicine countless times in my house (don't get me started on how a local ped neuro tried to do needless brain surgery on my 18 month old, or how a gastroenterologist tried to do surgery on my stomach when I was 22 when all I needed to do was quit my BIRTH CONTROL PILL!). Stephanie The really annoying thing about this is that this story is from 2001? It was so "simple" back then? So why is this all so complicated for all of us in 2009? ... You know, I'm not even gonna say anything else. this is what I was trying to convey on that thread about 'twittering'. If there are doctors out there that were/are "aware" of this something called "PANDAS" this many years ago, then why is it such a deep dark secret amongst the medical community still? Again I say, DIDN'T THEY ALL GET THE MEMO!!........ Faith Link to comment Share on other sites More sharing options...
marcicooynhc Posted October 17, 2009 Report Share Posted October 17, 2009 I guess my kid could be the poster child for what happens when PANDAS starts early in life and isn't treated.....because when that happens, its definitely not as simple as antibiotics! Don't get me wrong, PANDAS needs the press...just that titer checks and abx may be the answer for some kids, but so many need much more aggressive treatment and those of us who have been dismissed because of low titer counts...kinda feels like that's happening all over again. I am Marci-the mom of Jamie. I understand your concerns. I spoke with a mom, Marianne, yesterday who actually tried to get Augmentin (the antibiotic drug of choice now) from Germany before it became available in the US. Her request was denied. The point I am trying to make is that I know there are many variants in any one child. And Marianne explained that any stress such as illness (bacterial OR viral), immunizations, allergins, etc. can set off this autoimmune reaction in children predisposed to this process. I think that is why antibiotics are not the answer for every child exhibiting strange behavior after an exposure. However, I feel that if a child exhibits strange behaviors with sudden onset, as a parent I would be the first to say get their blood tested for Anti-DNAse B & ASO titers. And IF these levels are elevated I would demand that my child's doctor prescribe Augmentin immediately. This is one answer. It was our answer. And it could be other children's answer as well. We must keep searching for answers for children who do not respond to Augmentin. But for newly diagnosed PANDAS children...I feel they must be given a chance. Antibiotic therapy is this chance. Jamie and Sammy are here to be their hope. My wish is that all children can be free of PANDAS. Let's bring this disorder to the forefront and give parents, although we do not have all the answers, some answers. That is the mission of Beth Allison Maloney author of Saving Sammy and this is my mission. Marci Lichtenwalter Link to comment Share on other sites More sharing options...
peglem Posted October 17, 2009 Report Share Posted October 17, 2009 I guess my kid could be the poster child for what happens when PANDAS starts early in life and isn't treated.....because when that happens, its definitely not as simple as antibiotics! Don't get me wrong, PANDAS needs the press...just that titer checks and abx may be the answer for some kids, but so many need much more aggressive treatment and those of us who have been dismissed because of low titer counts...kinda feels like that's happening all over again. I am Marci-the mom of Jamie. I understand your concerns. I spoke with a mom, Marianne, yesterday who actually tried to get Augmentin (the antibiotic drug of choice now) from Germany before it became available in the US. Her request was denied. The point I am trying to make is that I know there are many variants in any one child. And Marianne explained that any stress such as illness (bacterial OR viral), immunizations, allergins, etc. can set off this autoimmune reaction in children predisposed to this process. I think that is why antibiotics are not the answer for every child exhibiting strange behavior after an exposure. However, I feel that if a child exhibits strange behaviors with sudden onset, as a parent I would be the first to say get their blood tested for Anti-DNAse B & ASO titers. And IF these levels are elevated I would demand that my child's doctor prescribe Augmentin immediately. This is one answer. It was our answer. And it could be other children's answer as well. We must keep searching for answers for children who do not respond to Augmentin. But for newly diagnosed PANDAS children...I feel they must be given a chance. Antibiotic therapy is this chance. Jamie and Sammy are here to be their hope. My wish is that all children can be free of PANDAS. Let's bring this disorder to the forefront and give parents, although we do not have all the answers, some answers. That is the mission of Beth Allison Maloney author of Saving Sammy and this is my mission. Marci Lichtenwalter Thank you for coming here to respond. I hope you were not offended by what I posted. I do appreciate what happened to Jamie and Sammy and the turmoil of their families in getting help. WONDERFUL that antibiotics made such a difference for both boys. The problem that many of us with PANDAS kids are having is that doctors very frequently believe that low ASO & AntiDnase titers rules out PANDAS, even in the face of positive strep cultures...and our children are denied treatment because of it. I'm so glad those high titers enabled you to get treatment for your child....but, while high titers are diagnostic for a prior strep infection, they are not diagnostic for PANDAS and that is where my angst comes from. -Peggy Link to comment Share on other sites More sharing options...
Suzan Posted October 17, 2009 Report Share Posted October 17, 2009 The doctors are lead to believe that PANDAS is 1 in 2000 so it is not at the top of their list of things to rule out. Plus, I have to say that I didnt' know that the strange things that my child was doing fell into OCD rituals and compulsions (until my son's OT brought it up to me). So, if the parents are not bringing up OCD/Tourettes to the doctors... That's why we need to start with the parents. If the parents are educated, then they can diagnose the disorder in their own child and then go to the doctor and demand treatment. THAT is when the docs will get on board, when the parents demand that they do... I remember a year ago...my son happen to NOT be in a pandas exacerbation but he was acting crazy (rages, tics, etc...). After being told that my son is bi-polar, I did some research and found out that Singulair and Zyrtec cause these symptoms. My son was on BOTH. When we removed them, it all went away (until his next pandas episode...sigh). The docs were ready to put my kid on a mood-stabilizing drug, when all he needed was to stop the singulair/zyrtec. The docs are just misinformed... Stephanie Crap! We are on zyrtec.......!! Also, I totally agree, everyone (doctors, friends, co-workers, parents) all told me (some even still do) that all this is NORMAL KID STUFF. We have low titers and the not as obvious OCD behavior (at least to someone who is not well versed with OCD like me). We're not an easily cured by antibiotic PANDAS family either but luckily the antibiotics help in the mean time. Susan Link to comment Share on other sites More sharing options...
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