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Walter's Story

The following is an email we sent to a very specialized doctor in Illinois,  This was the beginning of our family finding the answers we needed:

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 child neurologist and no one can explain to me what is happening to my son.  They have said that it is post viral cerebellentis 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 "OMS" but they would scuff it off or one doctor told us that his eyes are not moving enough (I believe he meant constantly).  Another doctor told us that this "OMS" was so rare that it can not possibly be what was happening to our son.  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 "OMS". 

Today my husband found your videos on you tube, 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 with out 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.  Half way 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).  Needles to say there has been little improvement and we have far surpassed out 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

Upon receiving this email Dr. Prazentelli the specialist in this field called us and really stressed the need to be in his office as soon as possible.  Three days later we were in Illoinis verifing that our son was truely one in ten million who had OMS.  We returned to Asheville, NC to begin treatments.  We contacted Wake Forest Childrens Hospital, they brought us in quickly and we began IVIG infusions.  We began to see improvement on speech a few days later.  A week after our IVIG infusion we began ACTH injections twice a day.  Improvement was drastic, within 4 days our son Walter was walking again!!!  We also began Rituxan (this is a chemo) soon thereafter. 

Walter is currently walking and he regains more and more speech each day.  The extend of cognitive loss can not be fully determined until complete recovery has come.  Walter is extremely immune surpressed due to all the medications he is having, so he can not be in general public.  He will continue to recieve IVIG infusions and ACTH for 2 more years.  It is a constant battle with our insurance over coverage due to ACTH costing so much per vial.  ACTH cost around $30,000 per vial which is 4ml we use 2 vials a month,  IVIG cost $5,000 per infusion once a month, and Rituxan (chemo)cost $10,000 for the 2 treatment we are in the middle of recieving. 

Walter will need to be in physical,occupational, and speech therapy to help him regain full capibilities in all area.  All of these have to be done in home due to immune surpressed body.  The outcome of this illness is now dependant on how much damage was done to his brain before we recieved the correct treatment and how many times Walter relapses due to catching an illness during the next 2 or more years. 

It is believed that OMS is caused by the bodies respond to a tumor somewhere in the body.  We have not been able to find a tumor up to this point but have to continue to have scans every 6 months looking for the possible tumor that could be on its way to developing.

I encourage everyone to look at our links on the side of the page to see current videos of  Walters progress and read more about this illness.