1/31/2012 - The News of Cletus is Starting to Spread

1/31/12 - Over the past couple of days I have began to receive calls from local and national pet organizations interested in learning about Cletus' story and diagnosis. Some of these organizations I have reached out to in hopes of receiving some help with the bills piling up due to his very expensive care. Some of these organizations have heard of Cletus' case through other sources.

Although we have not been able to pin down any help financially for Cletus yet, just getting the word out about his condition could only prove to help him and ultimately other loved pets whose owners find themselves in similar circumstances. This blog is not just for Cletus but for all pets and pet owners who are faced with dealing with open lipped schizencephaly (that is the first time I spelled that without looking it up).

Sending out a big THANK YOU you to our vet for being there for us through all of this!! Cletus needs to be watched 24 hours a day so we drop him off at our vet in the morning on the way to work and pick him up on the way home from work. Our vet and everyone involved with taking care of Cletus truly has his best interest at heart and makes us and Cletus feel loved everytime we walk in the door.

Also, sending out a HUGE THANK YOU to Heather from Fake-It Frugal for adding a link to us from her site http://www.fakeitfrugal.blogspot.com/

1/30/2012 - Good Days and Bad Days

1/30/12 - 8:45PM - We all have good days and bad days and so does Cletus. Today was a good day for me and for Cletus. Yes, it drives me crazy sometimes that my life seems to be consumed by Cletus and this insane diagnosis. Yes, I would like to be able to go out to dinner or catch a movie. Yes, I would like to be able to better afford all of the tests, medications, hospital visits, procedures, etc that Cletus now needs. 

Stepping back, I have to appreciate this moment. In this moment, Cletus is not in any pain. In this moment, Cletus is happy and playing and being a puppy. In this moment Cletus is still with me and when I look into those big beautiful brown eyes, that is all that really matters.

He has such a fantastic personality that he makes strangers fall in love with him with just one look. I am so proud that he is mine. We have to make him better.

I just need to find a way to make it through - financially and mentally. Financially, I am looking into getting help from the outside. I am trying to get the word out about Cletus and his unique diagnosis. It is hard to get people excited about open lipped schizencephaly when they can't even say it. I also set up a funding campaign at http://www.indegogo.com/ called "Find a Cure for Cletus". For the mental part, when I need to get out of the house (without Cletus), I will have to get a dog sitter (cheap dog sitter) to watch him for the hour or two I need to get away.

That's all for now, Cletus is ringing his bell to go outside...

1/29/2012 - This is starting to drive me mad!!!

1/29/12 - 6:17PM - I have not been out of the house except to go to work since New Year's Eve and that was cut short because Cletus was afraid of the fireworks noises. Since then, every moment has been dedicated to Cletus. In the morning, so he does not pee or crap in the house and so he can be watched for seizures, I bring Cletus to the vet and I pick him up on the way home from work. I don't go out to dinner, I don't go food shopping, I don't go to the movies, I stay with Cletus watching him to see if he is going to have a seizure. From Friday night until Monday morning, I am in the house with Cletus. Tonight I decided to go out to dinner and do some food shopping. I was gone a whole hour and 20 minutes and Cletus crapped and pee'd in the house. I can't go on living completely tied around the dog. I love him to death but this is getting to be too much.

I have not had a good night's sleep in over three weeks as I wake up with each creak of the house thinking that Cletus may be having a seizure. We had to put his bell back out for him to ring in case he wants to go out during the night so he does not go to the bathroom in the house and he rings that bell sometimes 3, 4, 5, 6 times a night. The past two or three nights I have taken it up after he rang it one or two times and locked him in the bedroom for the rest of the night but then he wakes me up at 6:30. I need sleep!!!  SLEEP!!!!!

1/29/2012 - Create a Blog - All about Cletus

1/29/12 - Decided to create this blog and put in all the information from the spreadsheet I have been keeping since November, 2011.  I will now begin to write about Cletus as things happen on here as well as the spreadsheet.

To tell you a little about me and Cletus... My name is Douglas Silber and I am the owner of Cletus, a 100 pound bloodhound living near Gainesville, Florida. Cletus celebrated his 2nd birthday on January 23rd, the same week he was diagnosed with the only known reported case of open lipped schizencephaly in a live canine.

Open lipped schizencephaly is a congenital cerebral malformation where spaces or clefts remain where the cerebral hemispheres would normally seal shut shortly after birth. Although extremely rare in humans, this malformation has never before been known to be reported in a dog making Cletus very special to the doctors even though he has been special to me for a long time.

Cletus was diagnosed with epilepsy after he began experiencing seizures in November of last year. I began to be more concerned when his seizure activity increased even after his medication was raised. I brought Cletus, or TeeTee as I call him in for testing and an MRI showed a congenital hydrocephalus, a buildup of excess cerebrospinal fluid (CSF) within and around the brain. Upon closer review, this MRI unveiled Cletus’ open lipped schizencephaly.

Over the past few weeks Cletus has been battling more and more seizure activity. Of Cletus’ fourteen known seizures, seven have occurred within the past week. So far the doctors have tried very hard to control Cletus’ seizures as well as reduce the amount of CSF in his brain to relieve the pressure but have had limited success.

All I am interested in is making sure Cletus has a good quality of life. I weigh the benefits and risks of each procedure or test and try to do what I feel would be best for TeeTee. Meeting Cletus, you wouldn't know anything was wrong with him at all. He loves to play and wrestle with his adopted brother, Magnum, take rides in the car, and catch tennis balls.

Over the past two weeks, I have spent over $4,000 on his treatments and I am seriously feeling the financial strain. I want to do what is best for Cletus but the bills are enormous. There is a limited amount to what I am able to financially afford. This is only the beginning of a long road ahead for Cletus and for us. Without treatment, he will die. Quite honestly with treatment he could die but I would rather do all I can to help him and I would hate that just because I can't afford to help him, he has to suffer for it.


According to the Humane Society of the United States, there are 78.2 million dogs in the U.S. (http://www.humanesociety.org/). According to rightdiagnosis.com, schizencephaly affects 1 in 2719 people or 0.04% of the population (http://www.rightdiagnosis.com/lists/preval.htm). If we assume the same statistic in dogs, it equates to between 28,760 and 31,280 dogs out there with schizencephaly in the U.S. alone.

Please help me to get the word out about Cletus and schizencephaly.

If you have any information that could help Cletus, please let me know.  Please pass this story on.

Anything you can do to help out my TeeTee would be great. He is so special to me. Thank you,

Doug

1/28/2012 - A New Prediction

1/28/12 - 6:45PM - Cletus showing early signs of a seizure such as running into walls, some stargazing, being clingy more than usual, having trouble getting up, I say seizure in 36 - 48 hours. Magnum is playing with him like normal but I will watch Magnum for signs from him that Cletus will have a seizure within 2 - 6 hours. Those signs have been Magnum refusing to play with Cletus, possible growling at Cletus, watching Cletus with a close eye.

1/27/2012 - Met with Head of Neurology

1/27/12 - 11:30AM - Met with neurologist and head of neurology. Raised phenobarbital to 200mg 2x/daily. Raised potassium bromide to 7.2ml once per day rather than 5ml once per day. Raised diazepam to 8ml per rectum after each seizure rather than 5ml on occasion. CT scheduled for 2/6/12 11:00 AM.

Why seizures only at home?  Unknown

Why early evening to early morning and weekends or weekdays while I am home?  Unknown

Why few days then series?  Trying to stop the seizures but they are still increasing in frequency.  Increasing in frequency and multiples.

1/27/2012 - Back to the Emergency Room

1/27/12 - 7:15AM - Brought Cletus back into UF Vet ER.

While we were checking in Cletus growled at a female (about 40 years old, heavy set) (growled twice, once when she went out with deceased animal, once when she came back in alone, hair was up on Cletus' back). I first thought it was towards dead animal but then happened again without animal?  First time growling at female.

1/27-2012 - Seizure #14

1/27/12 - 6:27AM-6:28AM - Seizure #14 - Seizure in bed (while sleeping). Lasted 15 - 20 seconds. Gave shot of Diazepam 5ml. (3 out of 10).

1/27/2012 - Seizure #13

1/27/12 - 3:11AM-3:12AM - Seizure #13 - Seizure in Master Bathroom. Lasted 1 minute. (2 out of 10). Snapped right up after seizure.

1/26/2012 - Seizure #12

1/26/12 - 11:10PM-11:11PM - Seizure #12 - Seizure while in bed (Not sure if sleeping yet). Lasted 1 minute. Took 3 mins to get up. Tongue looked blue. Looked like he was choking. (4 out of 10).

1/26/2012 - Magnum senses something

1/26/12 - 10:00PM - Magnum switched with Cletus. Went from playing to being cautious with Cletus and refused to play.

1/26/2012 - The old Cletus is back?

1/26/12 - 9:30PM - Cletus is playing with Magnum like he used to. Seems like he is feeling much better than he has in the past few days/weeks. Aside from eating and drinking like a fiend and the seizures, he is acting almost like the old Cletus right now.

1/26/2012 - Cletus and Aggression

1/26/12 - 5:30PM - Growled at another male today while at Hilltop Animal Hospital. This is the 4th time Cletus has growled at someone (Male about 7 years old), (all males and all over the past month). 1st time was a guest he never met before at our home on 12/27/11 (Male about 45 years old), 2nd time was at Hilltop in waiting room (unsure of date) (Male about 65 years old), 3rd time was at UF Vet waiting room on 1/21/12. (Male about 14 years old) Today, afterward Cletus licked my face and put his teeth on my chin, did not bite down (never did that before). I thought this may be something worth noting? First 3 incidents were grown men, this last incident was a small boy. Not 2 minutes prior Cletus let a small girl give him a treat with no issue. We have had Cletus since he was 6 weeks old, could not be an issue toward men in general as he was never abused. Could this be a sensitiviity toward testosterone issue?

1/26/2012 - Head of Neurology calls

1/26/12 - 3:30PM-4:45PM - Head of neurology called.  I need a plan of action.

How/when can we tell if medication is working? He said Potassium Bromide levels could be measured in 3 months.

I asked about open shunt or anti-syphen valve shunt possibilities. He said we will try to lower CSF with meds if possible and we will visit shunt options as the need arises.

I brought up Cletus having seizures on 11/1 and on 1/1 - both days I gave flea and tick and heartworm meds. He said due to Cletus having seizures on 11/1/11 and 1/1/12, we will avoid flea and tick medications for the time being as these are dates he was given these medications.

I asked when the CT will happen. He said CT will be scheduled for Monday, 2/6/12. Someone will be calling to schedule a time.

1/26/2012 - Seizure #11

1/26/11 - 3:30AM-3:31AM - Seizure #11 - Mild Seizure (3 out of 10) in Bedroom while sleeping. Lasted 1 minute. Snapped right out afterward.

1/25/2012 - Later

1/25/12 - 7:00PM - Cletus is looking and acting much better than he did yesterday. Much more alert and active.

1/25/2012 - Another new diagnosis - Open Lipped Schizencephaly

1/25/12 - 1:30PM - Neurologist called. Cletus was re-diagnosed by the Head of Neurology and the Head of Radiology with Open Lipped Schizencephaly (two halves of his cranium did not seal) (spine still open, kind of like spina bifida). Asymmetric. Never reported before in a dog. WTF???

Neurologist spoke with head of neurology and head of radiology and they do not recommend doing spinal tap to take out CSF as dogs product spinal fluid faster than humans.
Head of radiology will call to set up Cat Scan for Monday or Wednesday. UF will write off CT and Craneoplasty if needed as they are now planning on writing papers and journal articles on Cletus with this new diagnosis.

1/24/2012 - New seizure prediction

1/24/12 - 9:30PM - Cletus has been showing signs all night such as looking confused, walking unsteadily, crossing his legs, some stargazing, dizziness, and miss-stepping leading me to conclude that a seizure will happen within 24 to 48 hours.

1/23/2012 - Neurologist calls

1/23/12 - 12:30PM - Cletus' neurologist called and said that more than 1 seizure in 24 hours is too many. After the 1st seizure I should give him diazepam and after a 2nd seizure I should bring him in to the ER.

1/22/2012 - Got my Cletus back

1/22/12 - 6:00PM - Picked up cletus from ICU today. He is drooling some but they say that is from the potassium bromide.  I mentioned possibly trying to drain some of the fluid through a spinal tap but the ER doc said she does not know much about the and to talk to Cletus' neurologist.

1/21/2012 - Another trip to the Emergency Room

1/21/12 - 7:00PM-10:00PM - UF Vet ER is going to keep Cletus overnight in ICU. They are adding potassium bromide to Cletus' list of drugs and they are giving a boost of phenobarbital tonight.

1/21/2012 - Seizure #10

1/21/12 - 6:10PM-6:11PM - Moderate - Moderate/High seizure (7 out of 10) in DR. Lasted 1 minute. DR chairs knocked all over the place. Called UF ER, told them I am on my way.

1/21/2012 - UF Neurology finally called

1/21/12 - 5:10PM - UF Neurology called. Doctor on call spoke with Cletus' neurologist and was not overly concerned that Cletus had 2 seizures. If he has a seizure that lasts more than 2 minutes, bring him in. When I asked how many in what time from should concern me, she said Cletus' neurologist did not state.  real truth is she did not ask.  She then stated that if Cletus has 2 more seizures, bring him in. I take it as 4 seizures within 24 hours should concern me. I will call UF on Monday. I am not satisfied with this phone call.

1/21/2012 - Seizure #9

1/21/12 - 10:25AM - Seizure #9 - Mild - Moderate seizure in LR (5 out of 10). Lasted less than a minute. Cletus got right up afterward and seemed fine. Called vet to let them know and let me know what we should consider too many in a certain time frame.

1/21/2012 - Seizure #8

1/21/12 - 4:40AM - Seizure #8 - Mild seizure while sleeping on his bed (2 out of 10). Woke me up but I am sensitive to listening for it at this point. Only lasted a minute then Cletus got up, went into the DR and… urinated in the dining room. He must really hate the dining room.

1/20/2012 - Later

1/20/12 - 10:30PM - Urinated in dining room after coming inside???

1/20/2012

1/20/12 - We kept Cletus at the vet today so he could be watched for seizures while we are at work.  I ordered a wireless security camera system for the house so we can watch him while we are not home but it will take a week or two to come in.

1/19/2012 - Meeting with the Neurologist

1/19/12 - 4:00PM - Met with Neurologist. The fluid on the front part of Cletus' brain looks like the direct cause for his head tilt, rise in aggression, rise in anxiety, miss-stepping, confusion, disorientation, going to the bathroom in the house, everything. We feel good it is not cancer or a brain tumor.

The MRI is amazing. congenital hydrocephalus normally shows up right after birth so Cletus is a very rare case.  In addition, the fluid in his brain goes all the way from the front of his brain to the back which the docs have never seen before.

We asked about the prognosis and the Neurologist said that Cletus should live a long and healthy life and pass from something completely unassociated with congenital hydrocephalus.

Most likely Cletus will always be on phenobarbital. We may try to take him off if he does not have a seizure for a long time.

We can take Cletus home today and he can play with Magnum. He does not need to be careful, he can do everything he normally does.

From the steroids, they put Cletus on Prednisone, we can expect Cletus to eat and drink more and gain some weight.  Cletus also went on Omeprazole.  He is now on 4 medications.

It may be days, weeks, or months before we see results. Each dog is different.

1/19/2012 - MRI results, new diagnosis

1/19/12 - 10:00AM - Neurologist called. From the MRI they found Congenital Hydrocephalus (fluid on the brain). They will give meds to keep and keep Cletus on the phenobarbital. They are now going to do a spinal tap to rule out a bacterial infection.

1/19/2012

1/19/12 - 8:30AM - UF Neurology student called. They are getting Cletus ready for the MRI now. Cletus still has the head tilt. They will call back after the results from the MRI are back around 10:30 - 11:30AM.

1/18/2012 - Meeting with the Neurologist

1/18/12 - 4:00PM - Met with Neurologist. Bloodwork, X-ray, and Ultrasound clean except for nodule on spleen (not a likely cause). Phenobarbital level is at 28 (was at 20 on 1/3/12). Ideal phenobarbital level is around 33. We will measure the nodule in 3-4 months.

Cletus had full head tilt today, seems better now. When head was straightened, eye dropped. Could be as simple as inner ear infection combined with epilepsy where phenobarbital not working for Cletus. If need to, potassium bromide next drug of choice combined with phenobarbital.  I asked about Sodium Bromide instead of potassium bromide to help avoid GI issues and possible risk of megaesophagus (enlargement of esophagus). They said they split the dose in half and give with food to avoid complications.

Could be brain tumor, cancer, etc, or a combination or any of these as well as ear infection and/or epilepsy. MRI and Spinal Tap on 1/19/12. Total expected cost $2,500 - $3,000.

1/18/2012 - The tests begin

1/18/12 - 9:52AM - UF Neurology called. They said Cletus' condition does not look like idiopathic epilepsy. An X-ray and Ultrasound is scheduled for 2:00PM today. An MRI and spinal tap will be scheduled for 1/19/12.  The cause could be brain tumors, cancer, encephalitits, or a thyroid issue. Cost should be around $2,500.00. Breathe... Oh boy... I miss Cletus...

1/17/2012 - It starts getting serious

1/17/12 - 7:11PM - The ER Doc called. Cletus is drooling excessively, his head is tilting to the left, he is stargazing, and he is miss-stepping to the left. All of these things are symptoms of more serious conditions than epilepsy such as brain cancer or brain tumors.  Cletus will be transferred to neurology in the morning.

1/17/2012 - Emergency Room

1/17/12 - 1:00PM-4:00PM - Brought Cletus into the University of Florida Vet Emergency Room. We wanted an MRI done to rule out brain tumors.  If he was 7 years old having these symptoms, an MRI would be done.  The ER doc believes it is only epilepsy and wants us to watch him for the next couple of days and bring him back if he has a seizure. We explained that through the 7 seizures we have seen, he has never lost control of his bladder or deficated in any of them. If he has a seizure between 5 and 10PM, we will see it, otherwise, we won't. UF decided to keep Cletus overnight in ICU for observation on seizure watch.

1/16/2012 - Seizure #7

1/16/12 - 7:55PM-8:00PM - Seizure #7, mild - moderate, in kitchen,  Cletus stayed on floor for 10 - 15 minutes afterward which is very long for him.  Seemed very disoriented, did not want to move.

1/16/2012 Later

1/16/12 - 6:00PM-7:00PM - Cletus still being extremely clingy and licking a lot.

1/16/2012

1/16/12 - 2:00PM - Again, feces found in house, in the dining room, what the hell???

1/15/2012

1/15/12 - 6:00PM - Cletus being very clingy (noticed as a sign leading up to a seizure within 48 hours).

1/13/2012 - Seizure #6

1/13/12 - 8:05PM-8:07PM - Seizure #6 - Seizure, mild, in living room. I was eating popcorn and went to give Cletus a piece. When he reached to take it he slowly started twitching which turned into a seizure. Right after the seizure ended all he wanted was that piece of popcorn, he is such a little piggy.

1/13/2012 - Seizure #5

1/13/12 - 11:45AM - Seizure #5 - Found Cletus on our bed excessively drooling and slightly twitching.  We believe he was at the end of a seizure.

1/12/2012 Night

1/12/12 - Overnight - Cletus deficated in the house overnight.  He has never done this before. Something is wrong.

1/12/2012

1/12/12 - Again found feces in the living room and office when I came home on lunch, this is getting insane.  He is 100 pounds, he should be able to hold it in for 4 hours.

1/11/2012

1/11/12 - 1:00PM - Coming home on lunch now so Cletus only has to go 4 hours at a time but today I found feces in the living room and office when I went home on lunch.

1/6/2012

1/6/12 - Soft feces found in house. The vets are saying that Cletus may have less control over his ability to make it longer periods due to the medication. Once he gets used to the meds, he should get control back.

1/5/2012

1/5/12 - Soft and hard feces found in house when we came home from work. Cletus has been house trained for a year and a half???

1/3/2012

1/3/12 - The vets raised his phenobarbital level to 150mg 2x/day to try to get better control of the seizures.

1/2/2012 - Seizure #4

1/2/12 - 7:00PM - Seizure #4 - Seizure, moderate, in living room. Started while he was sitting right next to me doing nothing, no trigger at all.  I gave Cletus a shot of Diazepam (Valium) and it knocked him out of the seizure.  What is going on?

1/1/2012 - Seizure #3

1/1/12 - 3:55PM-4:00PM - Seizure #3 - Seizure, mild, in kitchen.

11/28/2011

11/28/11 - 4:40PM - Came home from work to find large pee spot in office (still wet). Could this have been a seizure?

11/17/2011

11/17/11 - Began phenobarbital 100mg 2x/daily

11/16/2011 - Seizure #2

11/16/11 - 5:55PM-6:05PM - Seizure #2 - Seizure, no urization. Seizure was worse than last time. I didn't even know that was possible. Cletus did not get up for 10 minutes after the seizure.

11/15/2011

11/15/11 - 6:15 PM - Cletus attempted to jump on the couch and then began to cower around the house like he does when it thunders.  Vinnie let him out.  When he came back in, he sat by Vinnie's chair for about a minute then got up and seemed fine.

11/13/2011

11/13/11 - 8:00-8:05 PM - I was sitting on the living room floor with Cletus.  He started growling.  I smelled the same smell as when he had the seizure.  He seemed nervous.  Lasted about 5 minutes.  Mark and Mindy were over.  I gave both dogs, Cletus and Magnum, treats.

11/2/2011

11/2/11 - The vet diagnosed Cletus with epilepsy.  Epilepsy tends to come out in puppies around  1 1/2 - 3 years old so this fits.  Hopefully this will be Cletus' only seizure.  The vet is not going to put Cletus on any meds right now unless Cletus has other seizures.

The Beginning - 11/1/2011

11/1/2011 - 2:15AM-2:30AM - Seizure #1 - Grand Mal Seizure in dining room. Seizure lasted 1-2 minutes followed by 1-2 minutes of catatonic state.  Cletus then sat up leaning against me, disoriented, slowly began to get up and walk around, limping, after about 10-15 minutes, Cletus was back to normal.