10/15/2012 - Cletus is having some trouble again

10/15/12 - From now on I am going to try to write daily or at least more frequently on Cletus' condition. 

Over the past week, Cletus has shown some signs of neurological pressure.  I brought Cletus and his brother, Magnum up to our friends farm on Sunday, 10/7 to run around with their friends and Cletus looked like he hurt his knee a little and was limping so I had him stay inside and rest.

From what I originally thought was Cletus hurting his knee changed into a more neurological issue.  Beginning Sunday night and increasing steadily throughout the week, Cletus became somewhat "clumbsy".  He would lose his balance a little here and there, lean on the furniture, maybe fall on the linoleum when his back legs slipped out from under him.  Cletus also would just sit in front of me and stare at me and stare at me and stare at me.  I also noticed that Cletus again began to cross his paws some when standing or laying down. 

These things could all be signs of neurological issues.  In my mind, one of two things could be happening, either Cletus was having very small seizures or focal seizures which we were not noticing or the cerebral spinal fluid (CSF) was buiding up and causing pressure on and in Cletus' brain.

I brought my concerns up to Cletus' vet on Friday, 10/12 thinking that if we could increase his CSF control medications for a temporary period, we could knock a portion of the CSF out of his brian and be proactive before it gets bad.

The vet called Cletus' neurologist at the University of Florida (UF) to get her input.  I do not like this neurologist.  The last time we saw her she told us that they could not do anything else for Cletus, sent us home with medication, and said that we need to put Cletus down.  That was 11 weeks ago, prior to his acupuncture.  Cletus had not had a seizure since then and he has been generally happy and healthy since that date, usually acting just like a normal puppy, playing, running, it has been great.

Anyway, the neurologist did say something good which was to check his phenobarbital and potassium bromide levels.  If they are low, we had room to play, if they are high, they could be causing what we are seeing.  On Saturday, 10/13, I brought Cletus in and had blood taken to have these levels checked.  The neurologist then started talking down to my vet but that is another story.

We got the results this morning and the phenobarbital is on the low-normal range and the potassium bromide is perfect.  We do have room to play but then I learned that these meds are for seizure control and not for CSF control. 

I again explained that I believe we need to temporarily increase the CSF control meds to pull out CSF as I believe this is a build up of CSF.  The CSF control meds Cletus is on is prednisone.  I also informed the vet that Cletus is increasingly getting worse.  He fell into his food dish while eating this weekend and also his water dish.  He is increasingly loosing his balance due to the pressure in his head.  The vet is now calling another neurologist in Jacksonville to see if he has an idea of what to do.

For those medical people reading this and thinking that we should try shunting; in Cletus' case, being that he is missing almost all of the top portion of his brain tissue, a shunt would most likely release the CSF too quickly and collapse the portion of remaining brain tissue causing a stroke and death.  Shunts only work 50% of the time in dogs anyway, cost about $1,500 each, and only last maybe a year or two at most... it is too risky.  Craneoplasty is also too risky I was told by neurologists at UF (the neurologist I do not like).  I would not mind getting other opinions.


If you can, please donate to Cletus' campaign http://igg.me/p/217159

As far as Cletus' doctors are aware of, Cletus has the only known reported case of open lipped schizencephaly in a canine. The key word here is reported. Most vets are not aware that schizencephaly exists or they are not aware that this condition is possible in an animal. Cletus is living proof of this possibility.

According to the Humane Society of the United States, there are 78.2 million dogs in the U.S. (http://www.humanesociety.org/). Some sites state that schizencephaly affect 1.54 per 100,000 people. According to rightdiagnosis.com, schizencephaly affects 1 in 2719 people or 0.04% of the population (http://www.rightdiagnosis.com/lists/preval.htm). The fact is that no one is sure how many people schizencephaly truly affects. If we assume these same statistics in dogs, it equates to up to 31,280 dogs out there with schizencephaly in the U.S. alone.

Please help me to get the word out about Cletus and schizencephaly. Contact your local news organization about Cletus or have your local news organization contact me directly at dsilber27@hotmail.com

Please help us by contacting Ellen through FB and tweet through the avenue below...

Submit your story to Ellen to potentially be on her show and have her help "change your life": http://ellen.warnerbros.com/show/respond/?PlugID=432

Tweet her: http://twitter.com/TheEllenShow/

Thank you for your support,

Doug & Cletus