Nobody understands the severity of PANDAS it has ruined my life for years. Anybody looking for help should ask their doctor about IVIG or Plasma treatments to help improve the quality of life with this disease
"For one year" she says empathically. I have been suffering with this since I was a kid and I am 20 now. Unfortunately I cannot find a doctor and I don't have a "Pandas Parent" to help me any more. If anyone can reccomend a doctor in the uk, please please contact me.
@magiczaps :D Sleep deprivation does that to you. Well, to Sammy. I guess the rest of us either fell asleep like normal people or stayed up through the night like crazy people.
@magiczaps Not really. Though there is one interesting story about him (which is true): during a 24-hour play festival, he once went home to take a break, and fell asleep standing in the shower for 2 hours. We shall never let him live it down.
My son started hoarding at 8 years old. I read about PANDAS while researching hoarding/ocd on the internet. no fever, no sore throat just weird stuff. He also started taking notes about what people around him were doing and repeating questions. It went on for months. At his 9yr old physical i told them to give him a strep test. positive. His symptoms went away in about a month. He got wierd again this year. tested him more quickly. +.hoping for improvement soon. he hates what he is doing
Even more worrisome than that is how few doctors are even aware of this disorder. I have even met some who refuse to acknowledge the disorder at all because it is so new to medicine. That is why I am so glad to see this getting some popularity. My sister was also diagnosed with PANDAS a few months ago so this is a very personal thing for me. Thank you so much for posting this and continue to spread the word!
I am really happy that this made the Today Show. It's really scary just how unknown this disorder is. I can only guess how many people are walking around taking pills for OCD when they really have PANDAS. It’s really sad because some of these miss-diagnosed kids have been prescribed all kinds of weird drugs to treat OCD when all they really need is some antibiotics.
This kid is like my doppelganger! I have PANDAS, just like this kid (however my symptoms were not as severe but certainly not mild). I started to show symptoms about the same age. I was also miss-diagnosed with OCD just like this kid. It was a year or so before we finally got the PANDAS diagnosis. All it took to treat me was antibiotic pills twice daily. I'm in high school now and still on antibiotics but all of my symptoms are now gone, just like this kid.
Like austin, I was diagnosed with pandas when I was around 8 or 9. My tics used to be more severe. Originally, I was just given a medication for tics. I had strep a couple of times after that, and was put on antibiotics for those. I'm not sure if the medications directly helped. I have been off all medications for about three years now, and my symptoms are improving (although they were never very severe to start with.) Now, I mostly only blink and make a few other movements.
its amazing to think that many of these so called "mental" problems are perhaps just bacteria or viruses affecting the brain , gives hope for seemingly hopeless cases. Needs more research!
hey, im austin. i was diagnosed with pandas when i was 8. im 15 now and im still having to overcome this. its been tough, but knowing people are out there willing to help really raises my optimism.
My son is 14 and we are trying to get a diagnosis. He looks just like Sammy. He has many vocal tics .iike saying I don't care, and don't look at me, and I'm not here. We are so worried. Now I think this may be our answer! Lisa
My 9 y.o. son also was diagnosed with PANDAS at the age of 7. We use antibiotics prophalactically and excarbations. I am in the process of researching information regarding IVIG treatment which my son currently receives for a Primary Immune Deficiency. I was very happy to see that someone is bringing this catastrophic disorder to light.
I cried when I saw this video. I had Valley Fever and several cases of strep (even now). Ever since I have had severe tics and have had to do vestibular therapy. I mentioned PANDAS in my new book on Autism and this video confimed my belief I have PANDAS. We are going 2 a special neurologist (3rd one now) & I am going to see if he can check for gamma traces. God Bless them for sharing this very needed story!
What may be the real tragedy here is that doctors used penicillin to treat what they call "PANDAS". I would pay close attention the doctor's warning in this video that we still do not have a complete picture of what caused this illness and so there remain many questions whether this boy, who appears to be quite normal now, truly has been cured of the underlying condition. Anyone considering using penicillin to treat OCD may wish to research L-form bacteria and autoimmune disease.
I am so thankful that we live in Washington State. In 1991 my son Jamie came down with OCD overnight. After searching for answers we were fortunate to find a Child Psycholgist, Dr. Steve Katz who referred us to the TOP DOCTOR in Seattle, Dr. Robert Reichler. He IMMEDIATELY diagnosed Jamie with PANDAS. He then made a call to his collegue at NIMH by the name of Susan Swedo- researcher of this horrible disease. We were told to IMMEDIATELY get Jamie on Amoxicillan. Thank you all for saving our son!
The year Jamie came down with OCD was actually 2001. He was born in 1991 and will be turning 18 this month. Jamie is doing great! We continue to be very greatful for all the wonderful Doctors in Seattle. Marci Lichtenwalter
Thanks to Beh and Sammy for sharing their story. My son also has PANDAS and after 7 years of repeat strep and virals he was not able to improve with steroids or antibiotics. Dr. Snyderman did not need to act like mental illness in children is so embarrasing tha jus adds to the stigma. My son now has long tem anxiety and tics and Aspergers from the PANDAS epsiodes. I am glad PANDAS is getting recognition and maybe Dr's will start to support and treat PANDAS families. It is a real disorder!
I put this video here because it's important to get the word out about PANDAS. There are different treatment options and it's important to note that no two PANDAS kids respond the same way to the same treatments. Symptoms can be sudden and severe or can develop over time and be more subtle. There are some great people out there researching and treating, but the medical community needs to get onboard. This is not a "really new" disorder and it needs attention and recognition. Kids are suffering.
On 7/ 4/08 my son started showing OCD behaviors. In Aug. his anxiety was so bad that he could not go to school and was taken to the ER. He started seeing a Psychiatrist and a counselor. Recently he started having vocal and facial tics. I presented the idea that my son might be suffering from PANDAS and my doctor but him on a 10 day Amoxicillin trial. I am really concerned that hisOCD and tics appear worse then they were. How long does it take to show any signs of improvement?
Some children show improvements quickly once on antibiotics, but some need more time and often a stronger antibiotic if results aren't seen with amox. You might consider trying a at least a month of antibiotics to see if there is improvement. If the amox doesn't work try something stronger like azithromycin or Augmentin. There are a few reasons why these may work better than amox. Personally I don't think 10 days is nearly long enough. I'm not an dr, though, just a mom of a PANDAS kid!
Thank you so much for responding. We tried 10 days of Amox. and his tics and compulsions got worse then they have been in months. I read Saving Sammy this week end and now I know what course I need to take for my son. It is reassuring to know there are people out there that understand all that goes along with this diagnosis. If you don't mind me asking; are/were your child's behaviors as severe as Ms. Maloney's son? My son has some severe behaviors, but not to the extream as Sammy.
No, my son's symptoms are not nearly as severe. He has tics, extreme irritability at times, emotional lability, and a little OCD in his thinking, but no real overt OCD. There is a pretty wide spectrum of symptoms and symptom severity with PANDAS.
Even on antibiotics, there can be setbacks and other illnesses and/or stress can compromise the blood brain barrier causing a flare up of symptoms.
I just want to thank Beth for writing the book and taking video of her son to prove to doctors. This is the same thing that my own son has been diagnosed with, after 3 1/2 years of not knowing and watching my bright son disapear before my eyes. Now families can have something to show doctors besides just our suspisions. My son like yours is now able to start at a small university. So thank you Beth, may this be the start to better and faster doctor care and treatment.
Well, Sammy wasn't con steriods, so it's unlikely that Augmentin does not effect the antibodies. It's also pretty much impossible for antibiotics to not effect antibodies.
There IS some anecdotal evidence linking steriods to fighting OCD though. I do not believe there have been any rigorous studies done in the area though.
It's definitely a possibililty! As a baby my son had constant ear infections. At just 7 months he needed THREE different course of antibiotics to treat them. He then started having developmental delays and dx PDD-NOS at age 3. Then came strep. At least 5 known cases. At 8, he turned psychotic literally overnight. He had various treatments for PANDAS, and while now at 12 he's a little better, he's never been the same. I truly believe autistic-like behaviors are caused by infections for some
Nobody understands the severity of PANDAS it has ruined my life for years. Anybody looking for help should ask their doctor about IVIG or Plasma treatments to help improve the quality of life with this disease
BauerOne92 1 week ago
"For one year" she says empathically. I have been suffering with this since I was a kid and I am 20 now. Unfortunately I cannot find a doctor and I don't have a "Pandas Parent" to help me any more. If anyone can reccomend a doctor in the uk, please please contact me.
mrlaa1 3 months ago
Thank you! With your help I think we are on our way to helping my son. Thank you for raising awareness. God Bless you Sammy and your mom.
griffin5fam 3 months ago
Well this might just save my life.
rmadrid10figo 4 months ago
I'd rather have PANDAS than have gastroparesis. :/
nocturnallyinsane 4 months ago
pandas is a totally awful disorder. I'm trying to raise awareness.
thePANDASgirl13 8 months ago
@magiczaps :D Sleep deprivation does that to you. Well, to Sammy. I guess the rest of us either fell asleep like normal people or stayed up through the night like crazy people.
V2Blast 9 months ago
@magiczaps Not really. Though there is one interesting story about him (which is true): during a 24-hour play festival, he once went home to take a break, and fell asleep standing in the shower for 2 hours. We shall never let him live it down.
V2Blast 9 months ago
AEPi AK was here. Sammy is now VP of his fraternity.
Stay awesome sammy
vaderdudenator1 9 months ago
My son started hoarding at 8 years old. I read about PANDAS while researching hoarding/ocd on the internet. no fever, no sore throat just weird stuff. He also started taking notes about what people around him were doing and repeating questions. It went on for months. At his 9yr old physical i told them to give him a strep test. positive. His symptoms went away in about a month. He got wierd again this year. tested him more quickly. +.hoping for improvement soon. he hates what he is doing
mrstrishd 11 months ago
Even more worrisome than that is how few doctors are even aware of this disorder. I have even met some who refuse to acknowledge the disorder at all because it is so new to medicine. That is why I am so glad to see this getting some popularity. My sister was also diagnosed with PANDAS a few months ago so this is a very personal thing for me. Thank you so much for posting this and continue to spread the word!
rangernitrostratos 11 months ago
I am really happy that this made the Today Show. It's really scary just how unknown this disorder is. I can only guess how many people are walking around taking pills for OCD when they really have PANDAS. It’s really sad because some of these miss-diagnosed kids have been prescribed all kinds of weird drugs to treat OCD when all they really need is some antibiotics.
rangernitrostratos 11 months ago
This kid is like my doppelganger! I have PANDAS, just like this kid (however my symptoms were not as severe but certainly not mild). I started to show symptoms about the same age. I was also miss-diagnosed with OCD just like this kid. It was a year or so before we finally got the PANDAS diagnosis. All it took to treat me was antibiotic pills twice daily. I'm in high school now and still on antibiotics but all of my symptoms are now gone, just like this kid.
rangernitrostratos 11 months ago
thank you for posting this vid... i suffer from similar disorder which common people done know of or are not familiar with.. thanks...
purpleloover 1 year ago
Oh hey, i go to school with him. met him a just couple months ago
meteorofedwardssky 1 year ago
I feel sorry for Sammy and his mother. To all parents everywhere: If you have a child with OCD and/or Tourette's check out strep infections!
montanerfan10 1 year ago
"it's worth at least talking about it"
kdheithaus 1 year ago
Go to Refresheverything and search p.a.n.d.a.s to vote for Dr. Cunningham's research. Spread the word.
KJ1166 1 year ago
Like austin, I was diagnosed with pandas when I was around 8 or 9. My tics used to be more severe. Originally, I was just given a medication for tics. I had strep a couple of times after that, and was put on antibiotics for those. I'm not sure if the medications directly helped. I have been off all medications for about three years now, and my symptoms are improving (although they were never very severe to start with.) Now, I mostly only blink and make a few other movements.
musisKat 2 years ago
its amazing to think that many of these so called "mental" problems are perhaps just bacteria or viruses affecting the brain , gives hope for seemingly hopeless cases. Needs more research!
joeygsmom 2 years ago
hey, im austin. i was diagnosed with pandas when i was 8. im 15 now and im still having to overcome this. its been tough, but knowing people are out there willing to help really raises my optimism.
Djzo123 2 years ago
Also, patients supposedly outgrow this disorder, but we'll have to wait and see if that happens.
musisKat 2 years ago
My son is 14 and we are trying to get a diagnosis. He looks just like Sammy. He has many vocal tics .iike saying I don't care, and don't look at me, and I'm not here. We are so worried. Now I think this may be our answer! Lisa
lisadianemoreno 2 years ago
My 9 y.o. son also was diagnosed with PANDAS at the age of 7. We use antibiotics prophalactically and excarbations. I am in the process of researching information regarding IVIG treatment which my son currently receives for a Primary Immune Deficiency. I was very happy to see that someone is bringing this catastrophic disorder to light.
smurftank 2 years ago
I cried when I saw this video. I had Valley Fever and several cases of strep (even now). Ever since I have had severe tics and have had to do vestibular therapy. I mentioned PANDAS in my new book on Autism and this video confimed my belief I have PANDAS. We are going 2 a special neurologist (3rd one now) & I am going to see if he can check for gamma traces. God Bless them for sharing this very needed story!
Kris
herding123 2 years ago
What may be the real tragedy here is that doctors used penicillin to treat what they call "PANDAS". I would pay close attention the doctor's warning in this video that we still do not have a complete picture of what caused this illness and so there remain many questions whether this boy, who appears to be quite normal now, truly has been cured of the underlying condition. Anyone considering using penicillin to treat OCD may wish to research L-form bacteria and autoimmune disease.
13579NYG 2 years ago
I am so thankful that we live in Washington State. In 1991 my son Jamie came down with OCD overnight. After searching for answers we were fortunate to find a Child Psycholgist, Dr. Steve Katz who referred us to the TOP DOCTOR in Seattle, Dr. Robert Reichler. He IMMEDIATELY diagnosed Jamie with PANDAS. He then made a call to his collegue at NIMH by the name of Susan Swedo- researcher of this horrible disease. We were told to IMMEDIATELY get Jamie on Amoxicillan. Thank you all for saving our son!
marcicooynhc 2 years ago
The year Jamie came down with OCD was actually 2001. He was born in 1991 and will be turning 18 this month. Jamie is doing great! We continue to be very greatful for all the wonderful Doctors in Seattle. Marci Lichtenwalter
marcicooynhc 2 years ago
Thanks to Beh and Sammy for sharing their story. My son also has PANDAS and after 7 years of repeat strep and virals he was not able to improve with steroids or antibiotics. Dr. Snyderman did not need to act like mental illness in children is so embarrasing tha jus adds to the stigma. My son now has long tem anxiety and tics and Aspergers from the PANDAS epsiodes. I am glad PANDAS is getting recognition and maybe Dr's will start to support and treat PANDAS families. It is a real disorder!
msnyder223 2 years ago
I put this video here because it's important to get the word out about PANDAS. There are different treatment options and it's important to note that no two PANDAS kids respond the same way to the same treatments. Symptoms can be sudden and severe or can develop over time and be more subtle. There are some great people out there researching and treating, but the medical community needs to get onboard. This is not a "really new" disorder and it needs attention and recognition. Kids are suffering.
sitali301 2 years ago 10
On 7/ 4/08 my son started showing OCD behaviors. In Aug. his anxiety was so bad that he could not go to school and was taken to the ER. He started seeing a Psychiatrist and a counselor. Recently he started having vocal and facial tics. I presented the idea that my son might be suffering from PANDAS and my doctor but him on a 10 day Amoxicillin trial. I am really concerned that hisOCD and tics appear worse then they were. How long does it take to show any signs of improvement?
1shopqueen1 2 years ago
Some children show improvements quickly once on antibiotics, but some need more time and often a stronger antibiotic if results aren't seen with amox. You might consider trying a at least a month of antibiotics to see if there is improvement. If the amox doesn't work try something stronger like azithromycin or Augmentin. There are a few reasons why these may work better than amox. Personally I don't think 10 days is nearly long enough. I'm not an dr, though, just a mom of a PANDAS kid!
sitali301 2 years ago
Thank you so much for responding. We tried 10 days of Amox. and his tics and compulsions got worse then they have been in months. I read Saving Sammy this week end and now I know what course I need to take for my son. It is reassuring to know there are people out there that understand all that goes along with this diagnosis. If you don't mind me asking; are/were your child's behaviors as severe as Ms. Maloney's son? My son has some severe behaviors, but not to the extream as Sammy.
1shopqueen1 2 years ago
No, my son's symptoms are not nearly as severe. He has tics, extreme irritability at times, emotional lability, and a little OCD in his thinking, but no real overt OCD. There is a pretty wide spectrum of symptoms and symptom severity with PANDAS.
Even on antibiotics, there can be setbacks and other illnesses and/or stress can compromise the blood brain barrier causing a flare up of symptoms.
sitali301 2 years ago
@1shopqueen1 he might be a carrier like me and so he can get it more often like me i have it right now im 8
whitewolf037 9 months ago
@sitali301 This is a very nice comment.
TheYumbacon 1 year ago
@sitali301 thank you so much i have pandas and no one knows what it is i crd when i saw this
whitewolf037 9 months ago
@sitali301 i had pandas it was terrible i didnt have the tics or the terets
Mrdjc9 8 months ago
If you would like to find additional information on PANDAS please go to Pandas Network
wendyroess 2 years ago 2
I just want to thank Beth for writing the book and taking video of her son to prove to doctors. This is the same thing that my own son has been diagnosed with, after 3 1/2 years of not knowing and watching my bright son disapear before my eyes. Now families can have something to show doctors besides just our suspisions. My son like yours is now able to start at a small university. So thank you Beth, may this be the start to better and faster doctor care and treatment.
11692jen1 2 years ago
This is incomplete story.
Maybe steroids would reduce the antibodies NOT Augmentin. Yet I believe PANDAS do exits.
drmdk 2 years ago
Well, Sammy wasn't con steriods, so it's unlikely that Augmentin does not effect the antibodies. It's also pretty much impossible for antibiotics to not effect antibodies.
There IS some anecdotal evidence linking steriods to fighting OCD though. I do not believe there have been any rigorous studies done in the area though.
jelinlikeafelin 2 years ago
My son has autism,, now I am wondering if he has strep because at birth him and his twin brother had a viral infection.
SamathaSantiago 2 years ago
It's definitely a possibililty! As a baby my son had constant ear infections. At just 7 months he needed THREE different course of antibiotics to treat them. He then started having developmental delays and dx PDD-NOS at age 3. Then came strep. At least 5 known cases. At 8, he turned psychotic literally overnight. He had various treatments for PANDAS, and while now at 12 he's a little better, he's never been the same. I truly believe autistic-like behaviors are caused by infections for some
wanda0923 2 years ago