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Thoughts and prayers to you and your faimly
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Thanks for the info and I pray that things improve for your son and family.
I did a little poking around online and found that http://webpediatrics.com/pandasclinicalcases.html appears to provide some pretty good case info on PANDAS.
I'm just learning about the condition from this post so I'm not sure how great the link is or how well it mirrors your personal experiences.
I found encouragement from the link that the "steroid bursts" seemed to be effective very quickly in the cases they mentioned. I'm hopeful that some of the successful treatments mentioned in the link are encouraging signs that your son will be able to experience significant healing with your current plan.
In the four cases mentioned:
Case 1: Three and six months follow up reports confirmed that patient had continued to remain symptom free.
Case 2: One-year follow up only confirmed patient's complete recovery and no further follow-ups had been scheduled.
Case 3: Follow ups of patient's condition at 1 month, and 1 year following the treatment confirmed a complete disappearance of her symptoms and a full recovery.
Case 4: There was an episode of recurrence of symptoms approximately 9 months after the treatment (mother reportedly had a Strept infection) and it was easily controlled with 5 days of Prednisone.
I hope and pray to see a post from you that mentions the words like "symptom free" and "complete recovery" very soon. Good luck to your family!
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Thoughts and prayers to you and your family. I saw the Dr. Drew show and what an awful thing to happen to anyone, especially a child. Keep us posted.
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Thoughts and prayers to your son and your family!
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Best of Luck Barry!! Your son and family our in our prayers!!!
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Thanks everyone with their warm wishes. Anything changes down the road I will update.
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Barry, Our thoughts and prayers are with you and your family.
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Barry my thoughts and prayers go out to your son and family. Hang in there
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The doctor from New Jersey that our boy has been working with for a month now was on the Dr.Drew show this evening and came back with the results of what is happening with the girls and boys in LeRoy NY. It is not a 'conversion disorder' as many thought it was, which we knew it wasnt the case with our son.
It is PANDAS (PANS)! It is official with them now and they can put all those other silly ideas to rest. Not a train derailment or enviroment thing.
Again this is where the anitbodies attack the brain and there is swelling down deep from strept.
Here is what was released.....................
Ramsey, NJ — February 6, 2012 — Rosario Trifiletti, MD has announced the results
of the laboratory data that he collected in standardized fashion from eight of nine girls he
examined in Le Roy, NY. National attention has been drawn to the plight of the teens who have
been unable to control various bodily twitching and jerking movements. Dr. Trifiletti reported
that five of eight girls show evidence of Streptococcus Pyogenes (common Group A strep) and
seven of eight show evidence of infection with Mycoplasma Pneumonia (the bacteria that causes
walking pneumonia). All eight girls tested show evidence of infection with at least one of those
pathogens. Both of these bacterium have been associated with a PANDAS-like illness of sudden
onset of motor and vocal tics. “A PANDAS-like illness is my working diagnosis, rather than a
mass conversion disorder as others have suggested,” said Dr. Trifiletti. He has already started
treating the girls with antibiotics and anti-inflammatory agents. When asked to comment on the
continued insistence by Dr. Laszlo Mechtler that the girls have conversion disorder (or mass
hysteria as Dr. Mechtler originally stated), Dr. Trifiletti said, “I'm confused by that because he's
never actually seen or interviewed any of the nine girls I examined.”
These findings provide a significant clue in the Le Roy High School mystery, but
certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are
common pathogens that children throughout the world are exposed to every day. Why this town?
Why this particular child and not another? Why such a curious presentation resembling Tourette
syndrome? Until these questions are fully answered, the doctor said that the cluster will remain a
mystery. “I suspect that genetic, environmental factors provide an immune background where
the PANDAS-like response is possible to common pathogens. The infectious exposure is simply
'the straw that broke the camel’s back,'” said Trifiletti. However, the infectious exposure points
the way to rational medical treatment for these children, which he said is of immediate
importance. “Clearly, their response to the treatment I've started will be helpful in supporting my
working diagnosis,” he added.
As with most illnesses, Trifiletti said there is a complex interplay of genetic and
environmental factors involved. As with all illnesses, psychological factors possibly play some
role as well. “All we have done here is provided evidence for exposure to two infectious agents
as potential factors,” said Trifiletti. “I encourage efforts to further explore genetic and other
environmental factors that likely are playing an additional role here."
It is PANDAS (PANS)! It is official with them now and they can put all those other silly ideas to rest. Not a train derailment or enviroment thing.
Again this is where the anitbodies attack the brain and there is swelling down deep from strept.
Here is what was released.....................
Ramsey, NJ — February 6, 2012 — Rosario Trifiletti, MD has announced the results
of the laboratory data that he collected in standardized fashion from eight of nine girls he
examined in Le Roy, NY. National attention has been drawn to the plight of the teens who have
been unable to control various bodily twitching and jerking movements. Dr. Trifiletti reported
that five of eight girls show evidence of Streptococcus Pyogenes (common Group A strep) and
seven of eight show evidence of infection with Mycoplasma Pneumonia (the bacteria that causes
walking pneumonia). All eight girls tested show evidence of infection with at least one of those
pathogens. Both of these bacterium have been associated with a PANDAS-like illness of sudden
onset of motor and vocal tics. “A PANDAS-like illness is my working diagnosis, rather than a
mass conversion disorder as others have suggested,” said Dr. Trifiletti. He has already started
treating the girls with antibiotics and anti-inflammatory agents. When asked to comment on the
continued insistence by Dr. Laszlo Mechtler that the girls have conversion disorder (or mass
hysteria as Dr. Mechtler originally stated), Dr. Trifiletti said, “I'm confused by that because he's
never actually seen or interviewed any of the nine girls I examined.”
These findings provide a significant clue in the Le Roy High School mystery, but
certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are
common pathogens that children throughout the world are exposed to every day. Why this town?
Why this particular child and not another? Why such a curious presentation resembling Tourette
syndrome? Until these questions are fully answered, the doctor said that the cluster will remain a
mystery. “I suspect that genetic, environmental factors provide an immune background where
the PANDAS-like response is possible to common pathogens. The infectious exposure is simply
'the straw that broke the camel’s back,'” said Trifiletti. However, the infectious exposure points
the way to rational medical treatment for these children, which he said is of immediate
importance. “Clearly, their response to the treatment I've started will be helpful in supporting my
working diagnosis,” he added.
As with most illnesses, Trifiletti said there is a complex interplay of genetic and
environmental factors involved. As with all illnesses, psychological factors possibly play some
role as well. “All we have done here is provided evidence for exposure to two infectious agents
as potential factors,” said Trifiletti. “I encourage efforts to further explore genetic and other
environmental factors that likely are playing an additional role here."
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Happy to report that for the first time since early fall Ryan rode a bike and went for a nice little ride. Did struggle at times but this is actually huge in his comeback. Still taking those steroids that is slowly working.
Today he started to relearn to use his motor skills in using a pen and writing again.
Today he started to relearn to use his motor skills in using a pen and writing again.
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Great news, Barry! We will keep praying ...
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That is great news!!! You are in our prayers!
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Way to go Ryan. Keep fighting.
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Great to hear!
And thanks for bringing the condition to light. I heard reported as early as yesterday night on the "Coast to Coast" radio show that the Le Roy kids were still thought to be suffering from "conversion disorder" (mass hysteria). I was disappointed in the report and immediately thought of your postings here.
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Reaching out for more prayers, if that is not to much to ask. Our son whom did have a heck of a comeback with the steriods has now had a major set back. Our biggest fears and worries was after he was taking off them what would happened. He is back to be struggling with everything again including walking at night and major fears in his head. For the first time in a while we are scared to death about his mental being. He has decreased his will in this fight.
Only possible hope now is to have a IVIG done in New Jersey. Hopefully and I do mean hopefully we get a good report from our insurance company and that this new type of IVIG method works. It is now crunch time and a very important time in his life.
Only possible hope now is to have a IVIG done in New Jersey. Hopefully and I do mean hopefully we get a good report from our insurance company and that this new type of IVIG method works. It is now crunch time and a very important time in his life.
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Sending positive energy and it is definitely not too much to ask for prayers and good thoughts. So sorry to hear of the setback.
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Barry,sorry to hear the not so great news. Let me know if there is ANYTHING i can do to help. You have my number, do not hesitate to call.
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You are in our thoughts. My first child is medically fragile and disabled so I have an idea of the fear the and pain. I hope the new treatment is approved and successful.
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God bless your son and your family, Barry ... will be in my prayers.
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Your son will be in our prayers
