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Sneezing girl finally diagnosed .... with PANDAS !


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FANTASTIC! Really truly great segment. I actually like how the reporter phrased that the immune system misfires. Nicely explained.

 

I'm also so very glad to hear that Lauren is doing better on antibiotics -- that's great to hear.

 

Buster

 

Lauren is finally diagnosed - with PANDAS : http://www.wavy.com/dpp/news/local_news/Sn...ially-diagnosed :
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I agree the early signs may be dismissed, but you definitely are aware they were there. I didn't know to put it all together, but nothing on earth could have sent me in to the depths of despair as me seeing my son scrunch his face into a grimace at 3 1/2 years old. no one forgets something like that. you may not know it is part of the PANDAS symptoms, but I certainly knew it was a tic. I also know of every 'quirk' my son had during the next few years. Most of us here have a pretty obvious profile, both past and present, so I guess I'm still a little confused.

 

I will reiterate, if a 12 year old child has had no other issues, and then gets two vaccines in the past few months and symptoms of tics erupt, my bet is on that, not the cold.

thanks for listening.

 

Faith

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In our own case, we missed the first two episodes when our daughter was 4.5. She had daytime urinary frequency and frequent handwashing until her hands were raw. The daytime urinary frequency, we took her in for a possible bladder infection but they found nothing. It turns out she was put on an antibiotic two weeks later for an upper respiratory infection and interestingly all the symptoms disappeared 2 weeks after that. We never made the connection at that time -- although it was in her medical history.

 

I bring this up because it's actually pretty easy for the early behavioral symptoms to be missed -- or rather we sure missed them in our child till all ###### broke loose in March 2008.

 

Buster

 

That is very interesting - our story is nearly identical. Age 3.5 - sudden obsessive handwashing, sep anxiety, fear choking, contaim fears - 2 weeks later, antibiotics for ear infection, 2 weeks later, all is fine. First week, we thought she had allergy to soap, 2nd week we knew something was wrong but seemed like anorexia & depression (which how can that be at 3??). 3rd week we were doing ERP and antibiotics, 4th week it was nearly fine just ERP, then 5th week, it was like it never happened.

 

Then nothing for 3 years, until all ###### broke out in late May 2008. Wierd. We did call it PANDAS at 3.5, but no one agreed at 6, and we gave it up for a stupidly long time. 2nd episode untreated except for antibiotics for a week in the middle, lasted total of 3 months. About 6 weeks of which were really bad. 3rd episode untreated except for inital ear infection - lasted 5 months, but there was an impetigo exposure at about 2 months that was a huge uptick and was really bad for another 6 weeks, and then trending down again, and much helped by antibiotics towards the end of month 4. We always do ERP.

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Faith, I guess I'm missing what you are arguing. In my case, we were thoroughly ill prepared for the severity of illness at 7 1/2 and it is only in retrospect (and studying the medical record) we can see other milder episodes. Perhaps for those who have severe tics rather than OCD, it is more clear, but, oh my goodness, there is nothing, nothing that would have prepared us for the "possession" and psychosis that happened in March 2008.

 

I'm not disputing there might be something to vaccines -- it's possible a vaccine could cause inflammation of the BBB .... who knows. To some degree, I think we should just talk about this as PAND (a pediatric autoimmune neuropychiatric disorder). Then we can talk about causality. Lets get the disease recognized first and treatment covered and then get pathogensis done.

 

Until we know more, I hope we can rejoice in each case on this forum of someone getting better because they've found something that works (be it antibiotics, pred, IVIG, PEX, ...).

 

While Lauren's symptoms would be considered mild by a lot of the parents on this forum, it is really the perfect type of case to follow in the media -- it's not the raging and contamination fears that are so difficult to see and worse to experience.

 

Buster

 

 

 

I agree the early signs may be dismissed, but you definitely are aware they were there. I didn't know to put it all together, but nothing on earth could have sent me in to the depths of despair as me seeing my son scrunch his face into a grimace at 3 1/2 years old. no one forgets something like that. you may not know it is part of the PANDAS symptoms, but I certainly knew it was a tic. I also know of every 'quirk' my son had during the next few years. Most of us here have a pretty obvious profile, both past and present, so I guess I'm still a little confused.

 

I will reiterate, if a 12 year old child has had no other issues, and then gets two vaccines in the past few months and symptoms of tics erupt, my bet is on that, not the cold.

thanks for listening.

 

Faith

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The vaccine may have gotten the ball rolling then the virus threw it over the edge. Or.....the vaccine is what caused the PANDAS to surface then it was the repetitive sneezing/turning that led to a tic. I have a question, and I may sound stupid here, but is it definitely a tic or could it be OCD related? if it was OCD related that would explain how it started out as a natural motion and led into a OCD ritual.

 

I agree, don't give Gardasil.

 

The thing is we really don't know her full medical history. The Mom does not have to disclose every detail to us and the more the docs prodded her, the more info and revelations may have surfaced.

 

 

I agree the early signs may be dismissed, but you definitely are aware they were there. I didn't know to put it all together, but nothing on earth could have sent me in to the depths of despair as me seeing my son scrunch his face into a grimace at 3 1/2 years old. no one forgets something like that. you may not know it is part of the PANDAS symptoms, but I certainly knew it was a tic. I also know of every 'quirk' my son had during the next few years. Most of us here have a pretty obvious profile, both past and present, so I guess I'm still a little confused.

 

I will reiterate, if a 12 year old child has had no other issues, and then gets two vaccines in the past few months and symptoms of tics erupt, my bet is on that, not the cold.

thanks for listening.

 

Faith

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I think the story also got media attention because it was able to be catagorized as a sneezing issue in a time when viruses and illness is in the news and will catch people's attention.

 

While Lauren's symptoms would be considered mild by a lot of the parents on this forum, it is really the perfect type of case to follow in the media -- it's not the raging and contamination fears that are so difficult to see and worse to experience.

 

Buster

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That was a great segment! So exciting for our kids! Hopefully the Today show will report on the results...

 

I certainly think it is possible for someone to develop pandas at age 12, why not? My dd was 5- no issues prior. My other daughter, who might have an extremely mild case was 8. I am convinced it is a certain strain of strep (or a few certain strains) that gets this ball rolling. I know Dr T, he is thorough, and would not lightly give a pandas diagnosis. I am sure he did titers, if they were high, bingo, they don't need a case of strep ( I don't put much stock in titers, but he does test them)- that along with sudden onset.

 

I am not saying the vaccines don't play their part though- it is just not as clear to me where that might fit in. I am positive vaccinations can damage kids, but that may be seperate and different than pandas?? Or like the perfect storm, could really rev up the pandas.

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I think Sammy was 11 (wasn't he?) when he developed PANDAS.

 

I agree with Buster that Lauren likely had low grade episodes/symptoms in the past that were "written off" as chidhood phases or for whatever reason went unnoticed.

 

I also completely agree with Buster on this:

 

While Lauren's symptoms would be considered mild by a lot of the parents on this forum, it is really the perfect type of case to follow in the media -- it's not the raging and contamination fears that are so difficult to see and worse to experience.

 

Lauren's symptoms are both highly visible and very socially acceptable (vs. scary pychiatric symptoms, horrible tantrums, your-child-needs-to be in a mental intstutution, or just-call-super-nanny type of behavior.) The general public can easily empathize with her without dealing with the "stigma" of mental illness (that most of our kids, if we were to put them on tv, would face. )

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I think Sammy was 11 (wasn't he?) when he developed PANDAS.

 

I agree with Buster that Lauren likely had low grade episodes/symptoms in the past that were "written off" as chidhood phases or for whatever reason went unnoticed.

 

I also completely agree with Buster on this:

 

While Lauren's symptoms would be considered mild by a lot of the parents on this forum, it is really the perfect type of case to follow in the media -- it's not the raging and contamination fears that are so difficult to see and worse to experience.

 

Lauren's symptoms are both highly visible and very socially acceptable (vs. scary pychiatric symptoms, horrible tantrums, your-child-needs-to be in a mental intstutution, or just-call-super-nanny type of behavior.) The general public can easily empathize with her without dealing with the "stigma" of mental illness (that most of our kids, if we were to put them on tv, would face. )

 

I have made a few posts recently about my 13 yr old son, whose was diagnosed with Pandas. His trigger was Swine Flu and I knew immediately something was wrong with him. No prior tics etc....so, yes an "older" child can develop Pandas. I am so thankful for this forum and all the information I have gathered from it. It took 3 LONG months for us to get a diagnosis, which is nothing compared to the length of time many children on this board have suffered. But we are all here for the same reason...knowledge to help our children.

I think we should be encouraged by Lauren's diagnosis and thankful that the word is getting out. I am confused by some posts....questioning the length of "time" it took to diagnosis her. All our children are suffering, some years but some just months.

My son was fortunate and received an IVIG within 3 DAYS of his Pandas diagnosis. He is improving daily and I thank all of you , who have posted on this board because it truly helped my son.

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I'm always here..just can't seem to find the time to participate on the forum while focusing on getting Lauren better (and all the media attention). I have directed so many parents who have contact me regarding to this forum.

 

We would not be where we are in this journey if it wasn't for the doctors and ALL OF YOU PANDAS parents offering us support and knowledge so that we can make educated decisions regarding Lauren's treatment. THANK YOU!

 

Trust me, this is just the start of the media attention. I cannot go into detail at the moment but stay tuned!

 

Lynn

 

"be the change you wish to see in the world-Ghandi"

 

I'm glad she got her diagnosis, but I also feel for the family. I remember when I found out it really was PANDAS. Relieved that I knew why this happening to my son. Scared that I didn't knwo what the future may hold. I hope she comes back here for support. It would be great if they helped spread the word, but we must all remember their first job is to get Lauren better.

 

What we can do as a community is to start contacting media outlets and use Lauren's Today Show story as an example. Thatway whomever reads the email with have something to associate PANDAS with. Explain how the word needs to get out and Lauren is an example of a child that could easily fallen through the cracks.

 

I will try to search out links to contact various shows an dsuch to make it easier. if we contact them in big numbers, we cannot be ignored.

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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 remember her saying that they were doing the Cunningham test.Those results probably aided in making a diagnosis.

 

There are others that say their children never had a + strep test. I think she said Lauren did have strep before.Perhaps this was not her first PANDAS epsiode, but mild ones occurred in the past and the parents just never realized it. At some point, we will probably get more information.

 

 

 

Also it is important to note not all kids recover completely with antibiotics. I have always seen antibiotics as a protection against strep not as a treatment for the symptoms. I know not everyone agrees with me on this. However alot of the newbies on here are going with one or two episodes improved on anibiotics not the ten plus episodes we have gone through. The symptoms wax and wane and improve with time. I am trying to say maybe the antibiotics are helping but not curing the episode and it is more about the symptoms are saw toothed. We have definately traced this saw toothed pattern over and over again. I have never seen my son recover as Sammy did but maybe that is due to the fact he was never on more then 300 mg daily of an antibiotic after treatment for the strep. I don't want to be negative but it is the reality we have faced. He is never gotten completely better just periods of improvement unil the next exacerbation. I don't want the public to get the idea that kids will be 100% if you get them on daily antibiotics. If that was the case then someone would have published that study by now.

 

It is great that another story is out there. The more different pandas scenerios out there the more people will see it's not just if your child suddenly wakes up with complete ocd.

 

 

What I'm confused about is that the mother said she had only a cold in the weeks before. she told us herself that she was negative on strep. If doctor is giving her abx, it is just as a trial, I don't really see how she could be "diagnosed" as this is only one episode. If she doesn't have a current strep infection, I'd be surprised if the abx eradicated this girl's tic, the same as for many of us here who have had symptoms for some time now. Some may not agree with me either, but for me, it was the Gardicil and the Dtap vaccines (double whammy) that she got in the months before that triggered her sneeze/vocal/tic. I've been on these boards for years and hve tracked alot of information given by the parents here, I know this has happened to several here. I don't ask question after question for no reason. I got a book yay thick.

 

Faith

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I'm always here..just can't seem to find the time to participate on the forum while focusing on getting Lauren better (and all the media attention). I have directed so many parents who have contact me regarding to this forum.

 

We would not be where we are in this journey if it wasn't for the doctors and ALL OF YOU PANDAS parents offering us support and knowledge so that we can make educated decisions regarding Lauren's treatment. THANK YOU!

 

Trust me, this is just the start of the media attention. I cannot go into detail at the moment but stay tuned!

 

Lynn

 

Yay! I see Dr. T next week and I can't wait. I am so glad he helped Lauren and I am glad you will be there to help be a voice in all of this. I have 2 PANDAS daughters. One has normal ASO titers and one gets slightly elevated titers and they both get vag strep.

 

Susan

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We haven't ruled out that vaccinations haven't played a part or that they might have something to do with the tic she has now. As we explore her past, there seems to be some evidence that she had an episode between the age of 6 and 7...

 

There are others that say their children never had a + strep test. I think she said Lauren did have strep before.Perhaps this was not her first PANDAS epsiode, but mild ones occurred in the past and the parents just never realized it. At some point, we will probably get more information.

 

 

If that is the case, than she is one lucky girl.... she has no ocd, no other issues up till now at 12 yrs old, then how could she have had PANDAS episodes in the past? I would think something would have been noticed. ... Does anyone else feel the vaccinations played a part? No one reporting this story is going to put that out there. I beleive its a good a possibility as any and also deserves equal attention from the media as PANDAS does.

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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"... :wacko:

 

In our own case, we missed the first two episodes when our daughter was 4.5. She had daytime urinary frequency and frequent handwashing until her hands were raw. The daytime urinary frequency, we took her in for a possible bladder infection but they found nothing. It turns out she was put on an antibiotic two weeks later for an upper respiratory infection and interestingly all the symptoms disappeared 2 weeks after that. We never made the connection at that time -- although it was in her medical history.

 

I bring this up because it's actually pretty easy for the early behavioral symptoms to be missed -- or rather we sure missed them in our child till all ###### broke loose in March 2008.

 

Buster

 

That is very interesting - our story is nearly identical. Age 3.5 - sudden obsessive handwashing, sep anxiety, fear choking, contaim fears - 2 weeks later, antibiotics for ear infection, 2 weeks later, all is fine. First week, we thought she had allergy to soap, 2nd week we knew something was wrong but seemed like anorexia & depression (which how can that be at 3??). 3rd week we were doing ERP and antibiotics, 4th week it was nearly fine just ERP, then 5th week, it was like it never happened.

 

Then nothing for 3 years, until all ###### broke out in late May 2008. Wierd. We did call it PANDAS at 3.5, but no one agreed at 6, and we gave it up for a stupidly long time. 2nd episode untreated except for antibiotics for a week in the middle, lasted total of 3 months. About 6 weeks of which were really bad. 3rd episode untreated except for inital ear infection - lasted 5 months, but there was an impetigo exposure at about 2 months that was a huge uptick and was really bad for another 6 weeks, and then trending down again, and much helped by antibiotics towards the end of month 4. We always do ERP.

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