EAMom Posted December 4, 2009 Report Posted December 4, 2009 Cam score was 144. Her ASOT was done too soon to show a rise. We will be repeating it tomorrow. We will also be checking for vaginal/peri-anal strep. Some don't ever have a ASOT rise (ie: busters daughter, even though she had a positive throat culture). If Faith keeps such well track of these things she should have known that! My trust is in Dr. Trifiletti, Dr. Leckman & Dr. K... I suspect if the vaginal/perianal strep culture will be negative (even if she had it when this all started) b/c of the Azith. she's on. Did you get to do throat cultures on family members? Have you tried Advil? Did it help at all?
EAMom Posted December 4, 2009 Report Posted December 4, 2009 I guess "we're on the same boat" as Lauren had urinary frequency between age 6 & 7. Lasted for months. no UTI or bladder infection..Hmmm. I quess the three of us are idiots for not knowing about PANDAS way back when...I will stop here before I say something "not so nice" to someone "not very nice"... Wouldn't it be nice if docs were actually clued in and knew to do throat cultures (and otherwise check for PANDAS) when kids show up with acting like they have a UTI (but don't)? So parents don't have to figure it out years later?
faith Posted December 4, 2009 Report Posted December 4, 2009 QUOTE(laurenjohnsonsmom @ Dec 3 2009, 07:13 PM) I guess "we're on the same boat" as Lauren had urinary frequency between age 6 & 7. Lasted for months. no UTI or bladder infection..Hmmm. I quess the three of us are idiots for not knowing about PANDAS way back when...I will stop here before I say something "not so nice" to someone "not very nice"... I'm pretty sure I've never called anyone here an idiot. laurensmom, I, like you have a child with a noticeable vocal tic, and many other symptoms and issues, both past and present. I can assure you, I am on the same 'idiot' boat as the one you think you are on with Buster and Meg'smom. They are not idiots, so please don't put that label on them as tho it came from me, you said that, not me. you don't know my story, you only know yours. I have admitted prior to this, that your daughter's case and the way you told it puzzles me because you said she has no other issues besides this 'sneezing' that began at 12, at least that's what you've said both here and in the media, so I'm going by that. I guess in time I'll understand all the pieces.... I'm sorry if my voice offends you, I don't know you at all, and my views are as just as anyone else's here. I'm just a very inquisitive and curious person, and, I'd like to think, also very honest in what I speak of, I'm not trying to offend. When it comes to this forum, I like to understand and peice things together, I'm trying to figure it all out, as only a parent on a quest to help their child can. So please forgive me if I point out that you are not special in that regard. And I am not "keeping track" , , I am truly interested and sensitive to their stories, I 'know' who they are. I've spent years, on the tourettes boards and here, both searching for answers, asking for help, and trying to give back to other parents as well with my own compilation of information and personal experimentation. I've cried and laughed and prayed with many parents here. Some nights, I had no one to cry to but God and some special people here, and thankfully they 'were' here..... Again, you don't know me, so please don't call me 'not so nice' because I am asking questions. I've not said anything nasty about you, so not sure where you are going with that. I am only talking about PANDAS here and stating my views and feelings as honestly as I can. I am not a reporter, I am just a mother, as you are, desperately trying to help my son, and have been doing so for 7 years, I've cried more tears than you can know........ and a few right now as well. have a nice night. Faith
Buster Posted December 4, 2009 Report Posted December 4, 2009 Hi, recommending a truce... If there's one thing I learned through this PANDAS experience it's that having my child sick left me physically and emotionally exhausted... I remember a doctor was starting to ask me if my daughter ever had a negative throat culture and I darn near took his head off ... he was just asking... Wishing all our children get and stay well ... Buster
peglem Posted December 4, 2009 Report Posted December 4, 2009 Hi, recommending a truce... If there's one thing I learned through this PANDAS experience it's that having my child sick left me physically and emotionally exhausted... I remember a doctor was starting to ask me if my daughter ever had a negative throat culture and I darn near took his head off ... he was just asking... Wishing all our children get and stay well ... Buster I agree. We're all on the same side here.
ajcire Posted December 4, 2009 Report Posted December 4, 2009 I guess "we're on the same boat" as Lauren had urinary frequency between age 6 & 7. Lasted for months. no UTI or bladder infection..Hmmm. I quess the three of us are idiots for not knowing about PANDAS way back when...I will stop here before I say something "not so nice" to someone "not very nice"... Wouldn't it be nice if docs were actually clued in and knew to do throat cultures (and otherwise check for PANDAS) when kids show up with acting like they have a UTI (but don't)? So parents don't have to figure it out years later? EAMOM, definitely... I echo the same sentiment about when children come in to the dr with the eye blink because that too seems to be a big starting place for this. I will always wonder what would have happened if the dr. didn't smile and say ah yes, the common childhood eye blink tic... it will pass and if he had done a culture instead. If only I knew then what I know now.
thereishope Posted December 4, 2009 Report Posted December 4, 2009 Make sure you let us know about appearances and any stories written. That way we can help if anyone has the nerve to say something negative about you, Lauren, or PANDAS. We got your back! You're not in this fight alone.
monarchcat Posted December 4, 2009 Report Posted December 4, 2009 Wow, am I late to the party! I didn't realize until this morning that Lauren's mom is posting! Just want to say welcome and I'm sorry that you have to be here with us! But, since you do need to be here you have found a great resource and source of support! I look forward to hearing more about your journey with Lauren through this nightmare that is PANDAS. It's great to see the publicity that PANDAS is getting while seeing Lauren receive the best possible treatment at the hands of good doctors. Every case of PANDAS is so different and each child displays such a myriad of symptoms that many, if not most, of us missed the signs for a long time. Of course since most doctors have no idea what PANDAS is, it's not so much missing the signs as having no way to put the right diagnosis on it. The more we can get PANDAS recognized in both the public realm and medical communities (and get the CORRECT info out there), the better it will be for all kids, those already diagnosed and the many who suffer without the correct diagnosis. I'm so sorry you have to go through this with Lauren, but the attention her case is getting is really doing wonders for bringing PANDAS to light! So, thank you for that!
laurenjohnsonsmom Posted December 4, 2009 Report Posted December 4, 2009 Faith, I sent you a PM. We are all filled with emotion (and most..a severe lack of sleep, also). Sometimes what we say comes across wrong and that we all need to be conscious in how it may be interpreted. Even when we all mean well we need to think twice, speak once! We are ALL in “the same boat”, just in different parts or the journey, for some it may take longer to get there, there may be "detours" along the way, (unfortunately, some more than others), we might take different routes, but our destination is all the same. Let’s not “rock the boat” but instead, unite and conquer! We also need to think twice about what we should “post on the forum” and what would be best served as a personal message sent. Peace! Lynn
coco Posted December 4, 2009 Report Posted December 4, 2009 One thing I was thinking about and talking to my husband about last night --- late --- after too much internet....but regarding the segments on sneezing girl: We feel that just about any publicity that gets shown to Pandas is great, especially since there has been like, how you say, NONE? for so long...however, perhaps in the short run here we can have a very severe case of a child with Pandas, complete with hand-licking, verbal tics, motor tics, OCD issues, sensory issues, anxiety disorder, etc., really in the spotlight to show families and other parents that this disorder is so seriously and deeply multi-faceted and there have been cases, perhaps millions, that have gone undiagnosed or improperly diagnosed, taking the parents on a totally different road in life...to a life of special education, anti-psychotic meds, hospitalizations, institutionalization and more. The investigative reporters should perhaps focus on the toll these children take on our school systems, when not correctly diagnosed...we all know that there are more and more children requiring special services than ever before. I am not saying that it's all due to pandas, but how many are due to undiagnosed pandas? I believe that TV docs ought to be saying "If your child has been diagnosed with ADD/ADHD, OCD, Anorexia, Tourettes, or ASD spectrum, these are the three simple tests you need to have your child undergo to rule out Pandas first." This is life changing. Beth Maloney opened the door, but it needs to be kicked in, and ALL options for healing where there is disagreement or not on the protocol, steriods, advil, ABX, IVIG, PEX, should all be on the table. I hope that the sneezing girl does not go the way of the "hiccupping girl" or the man who took too much collodial silver and turned blue, but rather as another way to get the debilitating story of pandas out. Let's get some parents and kids on tv to talk about the YEARS they have been battling this "thing" and all the ways it can present itself. Sorry for the long post, I am not trying to stir the pot here, just adding my 2 cents, and I wish each and everyone of us heartfelt best wishes for a full recovery for their kids and families as quickly and effectively as possible...the ones with a few symptoms for a short while, and even more poignantly...longtimers. Each story is precious! coco PS. I decided to copy this onto this thread...if Lynn (Lauren's mommy) is reading this, do you know what other, if any, more attention the media you are in contact with are planning to focus on regarding Pandas? I would be great to get some parents up there with you whose child is very severe pandas (long time) and can open the aperture on the vast array of symptoms many are enduring.
coco Posted December 4, 2009 Report Posted December 4, 2009 One more thing: Diana Pohlman would be GREAT to speak to this on a national level...she has been the reverend mother for so many of us!!
EAMom Posted December 4, 2009 Report Posted December 4, 2009 EAMOM, definitely... I echo the same sentiment about when children come in to the dr with the eye blink because that too seems to be a big starting place for this. I will always wonder what would have happened if the dr. didn't smile and say ah yes, the common childhood eye blink tic... it will pass and if he had done a culture instead. If only I knew then what I know now. That too!
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