Opsoclonus Myoclonus Syndrome.

[EmersonAilidh]

I don't have much time to type (SWAMPED with Chemistry homework) but I was watching Mystery Diagnosis while making flashcards & came across something interesting.

 

http://www.omsusa.org/

 

^^Opsoclonus Myoclonus Syndrome. (OMS)

It's commonly linked to neuroblastoma tumors, but they described it as an autoimmune disease where antibodies attack the brain & screw up nerve/brain cells.... Sound familiar??

Overnight onset of tics, rage attacks, sleep disturbances from insomnia to lethargy, anxiety, eating/sleeping difficulties, "mental clouding"... I don't have time to read as much as I would like to, like to find WHAT antibodies are responsible, but I just thought that was a tad odd & wanted to see what everyone else thought.

[tpotter]

Very, very interesting.

[Suzan]

I was just recently reading up on opsoclonus because my dd9 recently started having her eyes move like this and she has anxiety, sleep issues, eating issues.... I think that is what is going on with her eyes but we still need to talk to our doctors about it. The neuroblastoma part is scary. My friends daughter died from that tumor.

 

Susan

[Priscilla]

just when we think we have seen it all. I agree, the tumor thing is scary, makes me appreciate "just having PANDAS" (never thought I would say that). It is all perspective. I will be praying for you.

[EmersonAilidh]

I didn't really know what to think of it but I thought that it was worth mentioning. Definitely worth looking into at some point, cos this is the first time I've stumbled upon another autoimmune disease that sounds so similar (although there are some big differences) to P.A.N.D.A.S. In my head all of their crazy cybermoms are joining forces with us, & vice versa, to help eachother out..

 

I hope your daughter is doing well!!!

[Priscilla]

I don't have much time to type (SWAMPED with Chemistry homework) but I was watching Mystery Diagnosis while making flashcards & came across something interesting.

 

http://www.omsusa.org/

 

^^Opsoclonus Myoclonus Syndrome. (OMS)

It's commonly linked to neuroblastoma tumors, but they described it as an autoimmune disease where antibodies attack the brain & screw up nerve/brain cells.... Sound familiar??

Overnight onset of tics, rage attacks, sleep disturbances from insomnia to lethargy, anxiety, eating/sleeping difficulties, "mental clouding"... I don't have time to read as much as I would like to, like to find WHAT antibodies are responsible, but I just thought that was a tad odd & wanted to see what everyone else thought.

 

 

Did you read about the h1N1 vax causing narcolepsy in children and teens? I thought about you, was wondering if you had this vax?

[EmersonAilidh]

Priscilla ~ Nope! I actually got H1N1 last November, haha. Didn't even feel all that terrible, just felt like a bad exacerbation along with a "Bleh" feeling. But that's really interesting! I get all of my vaccines just because my immune system doesn't like to do much of anything besides attack my brain & can't attribute any symptoms to any of them. Getting my third Gardasil shot in about five months.

My Dad is one of the people that argues that not only is some Autism caused by vaccines, but that the vast majority is. Which I find just a tad odd, since my little Autistic brother has never so much as SEEN a vaccine... I don't know where I stand on that whole anti-vaccine debate (don't know what else to call it). All I know is that I can't stand Jenny McCarthy.

Edited September 22, 2010 by EmersonAilidh

[Sylvia]

OMG, I will really worry about you getting the Gardasil shot! I will hope for the best for you. Our doctor that is helping treat for PANDAS has treated several Gardasil victims with Hyperbaric Oxygen Therapy (HBOT).

 

Personally, I don't think autism is only triggered by vaccines, I think there are many things in the environment that can trigger the chain of effects that lead to the brain being injured. When the brain is injured at certain ages in infancy, it can manifest in autistic symptoms.

 

And I LOVE Jenny. I have been around way before she came along. Donated money, wrote politicians and the media, but it wasn't untill Jenny went on Oprah that this issue got any decent press. She has been the object of some pretty nasty comments for speaking out. But that lady has guts, and she doesn't back down. So a lot of us moms love her for that. She has said that she made a deal with God, that if He helped get Evan better, she would spread the word that it is possible to get better from a disorder that has always been considered hopeless. And guess what? She kept her word. After Evan made such an amazing recovery from severe autism, she could have gone back to her celebrity lifestyle. But she has stuck around and been a very strong voice for our community. To let the world know that a lot of our kids have been hurt by their vaccines, and we need to look for ways to make them safer. That makes her dangerous to the medical mainstream, and they have attacked just about everything about her. I think she is FABULOUS!

 

Priscilla ~ Nope! I actually got H1N1 last November, haha. Didn't even feel all that terrible, just felt like a bad exacerbation along with a "Bleh" feeling. But that's really interesting! I get all of my vaccines just because my immune system doesn't like to do much of anything besides attack my brain & can't attribute any symptoms to any of them. Getting my third Gardasil shot in about five months.

My Dad is one of the people that argues that not only is some Autism caused by vaccines, but that the vast majority is. Which I find just a tad odd, since my little Autistic brother has never so much as SEEN a vaccine... I don't know where I stand on that whole anti-vaccine debate (don't know what else to call it). All I know is that I can't stand Jenny McCarthy.

[EmersonAilidh]

OMG, I will really worry about you getting the Gardasil shot! I will hope for the best for you. Our doctor that is helping treat for PANDAS has treated several Gardasil victims with Hyperbaric Oxygen Therapy (HBOT).

 

Personally, I don't think autism is only triggered by vaccines, I think there are many things in the environment that can trigger the chain of effects that lead to the brain being injured. When the brain is injured at certain ages in infancy, it can manifest in autistic symptoms.

 

And I LOVE Jenny. I have been around way before she came along. Donated money, wrote politicians and the media, but it wasn't untill Jenny went on Oprah that this issue got any decent press. She has been the object of some pretty nasty comments for speaking out. But that lady has guts, and she doesn't back down. So a lot of us moms love her for that. She has said that she made a deal with God, that if He helped get Evan better, she would spread the word that it is possible to get better from a disorder that has always been considered hopeless. And guess what? She kept her word. After Evan made such an amazing recovery from severe autism, she could have gone back to her celebrity lifestyle. But she has stuck around and been a very strong voice for our community. To let the world know that a lot of our kids have been hurt by their vaccines, and we need to look for ways to make them safer. That makes her dangerous to the medical mainstream, and they have attacked just about everything about her. I think she is FABULOUS!

 

Priscilla ~ Nope! I actually got H1N1 last November, haha. Didn't even feel all that terrible, just felt like a bad exacerbation along with a "Bleh" feeling. But that's really interesting! I get all of my vaccines just because my immune system doesn't like to do much of anything besides attack my brain & can't attribute any symptoms to any of them. Getting my third Gardasil shot in about five months.

My Dad is one of the people that argues that not only is some Autism caused by vaccines, but that the vast majority is. Which I find just a tad odd, since my little Autistic brother has never so much as SEEN a vaccine... I don't know where I stand on that whole anti-vaccine debate (don't know what else to call it). All I know is that I can't stand Jenny McCarthy.

 

I know of one girl in my school district who supposedly got seizures from the vaccine, but my aunt died from cancer so when it comes down to cancer or seizures (which I arguably already deal with), the choice is obvious to me. I won't even try to act like I'm knowledgeable about vaccination though. All I know is that I see how NOT getting vaccinated has effected my immediate family, & that's all I really needed. Seven kids & two parents all coming down with The Whooping Cough (& as I said, God only knows what else...) multiple times is just not okay.

 

I really want to learn more about Autism. A lot of the kids that I work with, like my brother, are Autistic. I wish that I knew more about it. My brother is the lowest functioning verbal Autistic boy I think that I've ever come across & it makes me so sad. I want to understand.

 

Oh, I totally respect her for taking a stand for her child!! It's nothing having to do with that. I only WISH that we had a celebrity face to paste on P.A.N.D.A.S. & Lyme so that we might get recognition like that. I think that what she's doing is great & if I were in her position I can't imagine doing anything else, but I lost my respect for her the day that I heard her advocating Botox. Injections meant to prevent potentially lifethreatening infections are bad, but injections of botulism meant to prevent less-than-lifethreatening wrinkles are good? Like I said, I don't know as much as I would like to about Autism but I feel like ALL of the furor over the vaccinations is drawing away from researching Autism itself. In my head it's like us worrying about strep more than actual P.A.N.D.A.S. Does that make sense?

[Sylvia]

Oh I totally see where you are coming from. I am definitely biased for several reasons though. I have two boys with autism and either PANDAS or lyme as well. They both had bad reactions from their vaccines, which I was always told was normal. I don't spend a lot of time thinking what could have been done differently, but if the majority of doctors didn't think of vaccines as Holy Water, then maybe my boys doctors would have taken my concerns seriousely, and maybe they could have been spared some suffering and less damage to their bodies and immune system. But nope, when I got their medical records I saw that my concerns were noted, and dismissed. Or in doctor speak: "Mom was reassured". That's the terminology they like to use "reassured". If I had access to a medical library back in those days, I would have found that my youngest son met the criteria exactly for encephalopathy after each round of shots. The term to describe a baby's high pitched scream while violently arching his back is "encephalitic cry". He must have suffered excruciating pain.

 

Since then, I have become very active in the world of autism. I am a parent mentor for two national autism orgs, one local, and I also run my own support group that has over 200 members. I am also on two statewide committees. So I in contact with hundreds of autism parents. I cannot tell you the number of new parents I have had sitting at my dinning room table telling me about their childs regression after their shots. As a matter of fact, it was the last mother that almost sent me over the edge. She sat there with so much emotion telling me about her beautiful little boy and how sick he got from his vaccines, how his doctor blew off her concerns, and how he decended into a silent world of his own. And it really hit home - I have been hearing this exact story for 10 years - over and over and over again. For God's sake, when will it stop? When will doctors stop dismissing that this is REALLY happening? How many more babies will have their lives, futures and health devestated? How much more pain and suffering will families have to endure?

 

It used to be we, as a society, used vaccines judiciously. Now it is a free-for-all. The more the better. We have a one size fits all vaccine program without regard to the individuals heatlh needs. And there are more vaccine mandates on the way. Vaccines are big business. They are marketed now like soda pop. They make you think if you contract a disease you will drop dead immediately. But the loophole is that all of these vaccines make us weaker. A significant subset of children I come in contact with have documented immune disorder, that the parents trace to their regression from vaccination. So they are at risk from disease, but cannot ever risk another vaccine reaction.

 

So I apologize to everyone for going on and on about vaccines, but it is a very big subject for me.

 

OMG, I will really worry about you getting the Gardasil shot! I will hope for the best for you. Our doctor that is helping treat for PANDAS has treated several Gardasil victims with Hyperbaric Oxygen Therapy (HBOT).

 

Personally, I don't think autism is only triggered by vaccines, I think there are many things in the environment that can trigger the chain of effects that lead to the brain being injured. When the brain is injured at certain ages in infancy, it can manifest in autistic symptoms.

 

And I LOVE Jenny. I have been around way before she came along. Donated money, wrote politicians and the media, but it wasn't untill Jenny went on Oprah that this issue got any decent press. She has been the object of some pretty nasty comments for speaking out. But that lady has guts, and she doesn't back down. So a lot of us moms love her for that. She has said that she made a deal with God, that if He helped get Evan better, she would spread the word that it is possible to get better from a disorder that has always been considered hopeless. And guess what? She kept her word. After Evan made such an amazing recovery from severe autism, she could have gone back to her celebrity lifestyle. But she has stuck around and been a very strong voice for our community. To let the world know that a lot of our kids have been hurt by their vaccines, and we need to look for ways to make them safer. That makes her dangerous to the medical mainstream, and they have attacked just about everything about her. I think she is FABULOUS!

 

Priscilla ~ Nope! I actually got H1N1 last November, haha. Didn't even feel all that terrible, just felt like a bad exacerbation along with a "Bleh" feeling. But that's really interesting! I get all of my vaccines just because my immune system doesn't like to do much of anything besides attack my brain & can't attribute any symptoms to any of them. Getting my third Gardasil shot in about five months.

My Dad is one of the people that argues that not only is some Autism caused by vaccines, but that the vast majority is. Which I find just a tad odd, since my little Autistic brother has never so much as SEEN a vaccine... I don't know where I stand on that whole anti-vaccine debate (don't know what else to call it). All I know is that I can't stand Jenny McCarthy.

 

I know of one girl in my school district who supposedly got seizures from the vaccine, but my aunt died from cancer so when it comes down to cancer or seizures (which I arguably already deal with), the choice is obvious to me. I won't even try to act like I'm knowledgeable about vaccination though. All I know is that I see how NOT getting vaccinated has effected my immediate family, & that's all I really needed. Seven kids & two parents all coming down with The Whooping Cough (& as I said, God only knows what else...) multiple times is just not okay.

 

I really want to learn more about Autism. A lot of the kids that I work with, like my brother, are Autistic. I wish that I knew more about it. My brother is the lowest functioning verbal Autistic boy I think that I've ever come across & it makes me so sad. I want to understand.

 

Oh, I totally respect her for taking a stand for her child!! It's nothing having to do with that. I only WISH that we had a celebrity face to paste on P.A.N.D.A.S. & Lyme so that we might get recognition like that. I think that what she's doing is great & if I were in her position I can't imagine doing anything else, but I lost my respect for her the day that I heard her advocating Botox. Injections meant to prevent potentially lifethreatening infections are bad, but injections of botulism meant to prevent less-than-lifethreatening wrinkles are good? Like I said, I don't know as much as I would like to about Autism but I feel like ALL of the furor over the vaccinations is drawing away from researching Autism itself. In my head it's like us worrying about strep more than actual P.A.N.D.A.S. Does that make sense?