Walter Thomas OMS Page
This is an email we sent out in desperation after four months of no one knowing what was happening to our son in 2008!!
To whom it may concern,
I am writing this email as a frustrated exhausted parent of a wonderful, beautiful 3 year old boy named Walter Henry Thomas. On June 13 of this year my son was a normal healthy bad guy fighting little boy, when he woke up on June 14th he was tripping and falling, by June 15th my son no longer walked, talked, or sat up without help. We have gone to the hospital 2 different times staying there 4 days at a time. We have seen 2 different pediatric neurologist and no one can explain to me what is happening to my son. They have said that it is post viral cerebellitis but they are basing that off of him having one lose bowel movement 2 weeks before the on set. After our first hospital stay we researched day and night what this could be, from that point on we asked EVERY doctor we saw or had contact with in the hospital and out patient work if this could be "dancing eyes syndrome" aka OMS but they would scuff it off or one doctor told us that his eyes are not moving enough (I believe he meant constantly). My husband and I have never given up on looking for an answer. On the second hospital stay we asked for them to do a scan of the abdomen and complete torso area, but they proceeded to only do the lower neck area and head. None of the doctors can tell us why it is not "dancing eyes syndrome".
Today my husband found your videos on youtube, I started to cry because those children's symptoms look exactly like what my son has been exhibiting but he can not walk at all without assistance, his eyes do move all over but the frequency changes and it is hard to tell how far apart they happen. He is not sleeping well and is having terrible rage fits about twice a day. Halfway through when his ataxia started a new symptom of drooling began and is still drooling to the point we have to change his soaked shirt a couple of times a day.
We really started to up our search for answers when last Thursday our pediatric neurologist told us that he was up to 5 am the morning before trying to think of answers for us but he had "tried all that he knew" and referred us to UNC Chapel Hill. The closest appointment they could get for us was November 17, that is more then 2 months away. My husband and I are not willing to wait 2 months while possible brain damage could still be taking place. In the last 3 months since he first started showing signs the only things that have improved are he is not shaking as much when he reaches for objects he can sit without support but from time to time still falls but catches himself, he is trying to verbalize more (we really work hard with that one). Needless to say there has been little improvement and we have far surpassed our prognoses of 3 week recovery rate.
We would love to be able to send our medical records, video clips via email, or really just come there so we can either rule this out or get some answers. We are living in a nightmare and want to know what is happening to our son.
Thank you for your time and any consideration you could give us,
William and Julie Thomas
I sent this email one late night after finding a video on Youtube with a girl whose symptoms looked just like Walters and we followed the breadcrumbs to Dr Pranzatelli. I received a phone call early the next morning from Elizabeth D. Tate, C-FNP, MN at Southern Illinois University, School of Medicine. She asked when we could be there because she wanted us there now. This was the first time since onset (3 months) that anyone wanted to move quickly so I asked her why the urgency and she stated everyday we wait is more brain damage being done to Walter. We left immediately!!! We had a spinal tap (which would make our second done) and they confirmed Walter had a severe case of Opsoclonus Myoclonus Syndrome. They were amazed that no doctor had even given Walter steroids or any other medicine other then fluids. We will later find out that this probably helped Walter bc when we started the correct treatment plan and gave him the highest dosages of the protocol it really shocked his system since it had not had any medicine up to this point. Up to this point for months Walter looked like a child with the late stages of MS. We took some videos so we could send it to the doctors. We still cry every time we watch them.
To whom it may concern,
I am writing this email as a frustrated exhausted parent of a wonderful, beautiful 3 year old boy named Walter Henry Thomas. On June 13 of this year my son was a normal healthy bad guy fighting little boy, when he woke up on June 14th he was tripping and falling, by June 15th my son no longer walked, talked, or sat up without help. We have gone to the hospital 2 different times staying there 4 days at a time. We have seen 2 different pediatric neurologist and no one can explain to me what is happening to my son. They have said that it is post viral cerebellitis but they are basing that off of him having one lose bowel movement 2 weeks before the on set. After our first hospital stay we researched day and night what this could be, from that point on we asked EVERY doctor we saw or had contact with in the hospital and out patient work if this could be "dancing eyes syndrome" aka OMS but they would scuff it off or one doctor told us that his eyes are not moving enough (I believe he meant constantly). My husband and I have never given up on looking for an answer. On the second hospital stay we asked for them to do a scan of the abdomen and complete torso area, but they proceeded to only do the lower neck area and head. None of the doctors can tell us why it is not "dancing eyes syndrome".
Today my husband found your videos on youtube, I started to cry because those children's symptoms look exactly like what my son has been exhibiting but he can not walk at all without assistance, his eyes do move all over but the frequency changes and it is hard to tell how far apart they happen. He is not sleeping well and is having terrible rage fits about twice a day. Halfway through when his ataxia started a new symptom of drooling began and is still drooling to the point we have to change his soaked shirt a couple of times a day.
We really started to up our search for answers when last Thursday our pediatric neurologist told us that he was up to 5 am the morning before trying to think of answers for us but he had "tried all that he knew" and referred us to UNC Chapel Hill. The closest appointment they could get for us was November 17, that is more then 2 months away. My husband and I are not willing to wait 2 months while possible brain damage could still be taking place. In the last 3 months since he first started showing signs the only things that have improved are he is not shaking as much when he reaches for objects he can sit without support but from time to time still falls but catches himself, he is trying to verbalize more (we really work hard with that one). Needless to say there has been little improvement and we have far surpassed our prognoses of 3 week recovery rate.
We would love to be able to send our medical records, video clips via email, or really just come there so we can either rule this out or get some answers. We are living in a nightmare and want to know what is happening to our son.
Thank you for your time and any consideration you could give us,
William and Julie Thomas
I sent this email one late night after finding a video on Youtube with a girl whose symptoms looked just like Walters and we followed the breadcrumbs to Dr Pranzatelli. I received a phone call early the next morning from Elizabeth D. Tate, C-FNP, MN at Southern Illinois University, School of Medicine. She asked when we could be there because she wanted us there now. This was the first time since onset (3 months) that anyone wanted to move quickly so I asked her why the urgency and she stated everyday we wait is more brain damage being done to Walter. We left immediately!!! We had a spinal tap (which would make our second done) and they confirmed Walter had a severe case of Opsoclonus Myoclonus Syndrome. They were amazed that no doctor had even given Walter steroids or any other medicine other then fluids. We will later find out that this probably helped Walter bc when we started the correct treatment plan and gave him the highest dosages of the protocol it really shocked his system since it had not had any medicine up to this point. Up to this point for months Walter looked like a child with the late stages of MS. We took some videos so we could send it to the doctors. We still cry every time we watch them.
After battling the insurance company to get the exact medicine the protocol calls for and not an "equivalent" by their standards but not by the specialist standards we began the regimen outlined by Dr Michael R. Pranzatelli at Southern Illinois University and within a week Walter was learning to walk again at the same time his little sister was learning to walk for the first time.
Fast forward through 3 years of multiple times a day painfully shots, monthly IVIG infusions, chemo to completely wipe out the old immune system, multiple hospital stays, every scan you can think of, seeing specialist in California and Illinois, and most important part complete isolation for 2 years. The isolation was the key part we believe that saved Walter from the horrible plague of habitual relapsing that most OMS kids experience.
This brings us to present time 2013. Walter is your average bad guy fighting little superhero as all little boys and girls should be. He is off all medicine. We still pull him out of school when the flu (which is a major relapse trigger) comes around. He is very intelligent and has been tested several times by the school system and outside doctors. What our major struggle now is speech, handwriting, and the way he processes information. He can add and subtract at grade level but when you ask him to say the number he struggles. No one has yet to identify why that is. How I am looking at the speech and learning difficulties are that he is like a stroke victim who has to rewire all that he lost. The ability is there, the brain just has to reroute it.
We have learned that no one else is going to step up and guide you through things. We have to be Walters number one advocate and fight for everything he needs and deserves and legally has a right to. We have battled insurance companies, school systems, and doctors. We have found that through time it has gotten easier. I don't know if that is because we have become more familiar with all the systems or because we are red flag on all files to say just give these people what they want bc they will not give up til they get it ;)
We still get nervous about the possibility of relapse. He is 8 years old now and the doctor tells us statistically if the child has never relapse by 8 years old they may never relapse. Anyone who took statistics 101 in college knows how statistics can go specially when your dealing with a disease that only 1 in 10 million get, so we still worry immensely when flu is here or when he gets a fever but we also know that he can not live in a bubble and things are what they are and you deal with it as it comes. You learn to weigh your different options and what level of risk they bring. He is such a smart and adventurous boy who is full of life and is the most caring sweet boy you will meet. He will sometimes say "mommy can we go play again with the kids who have no hair" He is referring to the cancer wings of the childrens hospital. He always wants to donate his toys that he has outgrown to the infusion/radiation center where he received infusions once a month all day for years.
Walter ran in his first official race with mommy this past month. Mommy cried at the finish line out of happiness and relief to know how close Walter was to never walk or talk again but that he was not only running but non-stop talking as he did it!! If you have found this website when searching for answers or because your family was diagnosed with a child who has OMS what we can say is never give up and always follow your gut feeling. My husband and I are not doctors or scientist. We are normal people who just never gave up on finding an answer and following our gut feelings. I wish you all the best and the brightest the world has to offer. LIVE, LOVE, LAUGH. Please feel free to contact us with any questions at the email below.
For more information on OMS go to http://omsusa.org
This brings us to present time 2013. Walter is your average bad guy fighting little superhero as all little boys and girls should be. He is off all medicine. We still pull him out of school when the flu (which is a major relapse trigger) comes around. He is very intelligent and has been tested several times by the school system and outside doctors. What our major struggle now is speech, handwriting, and the way he processes information. He can add and subtract at grade level but when you ask him to say the number he struggles. No one has yet to identify why that is. How I am looking at the speech and learning difficulties are that he is like a stroke victim who has to rewire all that he lost. The ability is there, the brain just has to reroute it.
We have learned that no one else is going to step up and guide you through things. We have to be Walters number one advocate and fight for everything he needs and deserves and legally has a right to. We have battled insurance companies, school systems, and doctors. We have found that through time it has gotten easier. I don't know if that is because we have become more familiar with all the systems or because we are red flag on all files to say just give these people what they want bc they will not give up til they get it ;)
We still get nervous about the possibility of relapse. He is 8 years old now and the doctor tells us statistically if the child has never relapse by 8 years old they may never relapse. Anyone who took statistics 101 in college knows how statistics can go specially when your dealing with a disease that only 1 in 10 million get, so we still worry immensely when flu is here or when he gets a fever but we also know that he can not live in a bubble and things are what they are and you deal with it as it comes. You learn to weigh your different options and what level of risk they bring. He is such a smart and adventurous boy who is full of life and is the most caring sweet boy you will meet. He will sometimes say "mommy can we go play again with the kids who have no hair" He is referring to the cancer wings of the childrens hospital. He always wants to donate his toys that he has outgrown to the infusion/radiation center where he received infusions once a month all day for years.
Walter ran in his first official race with mommy this past month. Mommy cried at the finish line out of happiness and relief to know how close Walter was to never walk or talk again but that he was not only running but non-stop talking as he did it!! If you have found this website when searching for answers or because your family was diagnosed with a child who has OMS what we can say is never give up and always follow your gut feeling. My husband and I are not doctors or scientist. We are normal people who just never gave up on finding an answer and following our gut feelings. I wish you all the best and the brightest the world has to offer. LIVE, LOVE, LAUGH. Please feel free to contact us with any questions at the email below.
For more information on OMS go to http://omsusa.org
6/2014 Update
I pulled Walter out of public school in October 2013. He has severe Dyslexia and Dysgraphia. I got tired of the once a week meetings with the school system to fight for what he needed. It was not the particular school we were fighting bc they were awesome and wanted to give him all he needed it was at the county level where funding is handed out. I was tired of him going to school all day then coming home and having to reteach all that was taught that day until bedtime. He was exhausted too. Walter was in first grade and already had completed 2 years of kindergarten, he hit a wall with timed test and constant push to read read read. He lost his excitement for learning. He lost his self esteem. Then one day while at work I received a call from his teacher expressing concern bc they had never heard a child in first grade say he wanted to die and truly mean it. That day I decided to quit my job of 8 years working as state law enforcement and do something I knew nothing about teaching homeschool. I did not care if we had to eat rice and beans we were going to make it work someway. I went to seminars about learning disabilities. I studied up about different teaching material and we started. We found out he has a gift and love of learning about history. He does not love math but he is above grade level with it. We struggle with reading. He started to read after about 1 month of homeschooling. It is slowly progressing but at least now he can excel and has gotten his self esteem back with history and math and science. He loves to challenge his older cousins and some of our adult friends about their knowledge of history. He loves to see if they know about "Beowulf" or the Magna Carta or the Barbarians. I love to see his excitement for learning. If I had known that homeschooling would have benefited him this much I would have done it a long time ago. The number one thing I hear from others is "aren't you worried about socialization". That is a common misconception. The fact is we cover more information from 8:30am to 12:30 am then they do in a whole day of school which then allows us to do so much more with our day. He is actively involved in a lot of 4 H groups, nature groups, and other homeschooling families. Its about being involved with your community as a whole. Walter is thriving in the homeschooling setting and I could not be prouder of him!!
I pulled Walter out of public school in October 2013. He has severe Dyslexia and Dysgraphia. I got tired of the once a week meetings with the school system to fight for what he needed. It was not the particular school we were fighting bc they were awesome and wanted to give him all he needed it was at the county level where funding is handed out. I was tired of him going to school all day then coming home and having to reteach all that was taught that day until bedtime. He was exhausted too. Walter was in first grade and already had completed 2 years of kindergarten, he hit a wall with timed test and constant push to read read read. He lost his excitement for learning. He lost his self esteem. Then one day while at work I received a call from his teacher expressing concern bc they had never heard a child in first grade say he wanted to die and truly mean it. That day I decided to quit my job of 8 years working as state law enforcement and do something I knew nothing about teaching homeschool. I did not care if we had to eat rice and beans we were going to make it work someway. I went to seminars about learning disabilities. I studied up about different teaching material and we started. We found out he has a gift and love of learning about history. He does not love math but he is above grade level with it. We struggle with reading. He started to read after about 1 month of homeschooling. It is slowly progressing but at least now he can excel and has gotten his self esteem back with history and math and science. He loves to challenge his older cousins and some of our adult friends about their knowledge of history. He loves to see if they know about "Beowulf" or the Magna Carta or the Barbarians. I love to see his excitement for learning. If I had known that homeschooling would have benefited him this much I would have done it a long time ago. The number one thing I hear from others is "aren't you worried about socialization". That is a common misconception. The fact is we cover more information from 8:30am to 12:30 am then they do in a whole day of school which then allows us to do so much more with our day. He is actively involved in a lot of 4 H groups, nature groups, and other homeschooling families. Its about being involved with your community as a whole. Walter is thriving in the homeschooling setting and I could not be prouder of him!!
