Wednesday, February 22, 2012

2/22/2012 - Cletus' Seizure Spreadsheet

2/22/12 - Cletus' Seizure Spreadsheet as it stood at the end of January.

For those with animals suffering from seizures, the spreadsheet below may help you in figuring out how to keep track of what is happening with your loved one.

This spreadsheet was made better and better over time (I am a bit crazy also if you can't tell).  I have tried to take out any references to names or phone numbers being that I am making this public but for your spreadsheets, you should keep track of all the people you speak to and phone numbers for easy access on the spreadsheet as I did. 

This spreadsheet became VERY HELPFUL for the vets in determining the best treatment for Cletus and in determining Cletus' diagnosis.  It helped to save his life.


Medication Info / Given
Known Seizure
Urination / Defication in House
Sign/Prediction Seizure is Coming
DATETIME STARTTIME ENDKNOWN SEIZURENOTES
11/1/20112:15 AM2:30 AM#1Grand Mal Seizure - Dining Room. Seizure lasted 1-2 minutes followed by 1-2 minutes of catatonic like 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.
11/13/20118:00 PM8:05 PMI was sitting on the LR floor with Cletus. He started growling. I smelled the same smell as when he had the seizure. He seemed nervous. Lasted about 5 mins. Mark and Mindy were over. I gave the dogs treats.
11/15/20116:15 PM6:20 PMCletus 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 min and then got up and seemed fine.
11/16/20115:55 PM6:05 PM#2Seizure, no urination. Worse than 1st time. Did not get up for 10 min after seizure.
11/17/2011NANABegan Phenobarbital 100mg 2x/daily
11/28/2011NA4:40 PMFound large pee spot in office (still wet).
1/1/20123:55 PM4:00 PM#3Seizure, mild, in kitchen.
1/2/20127:00 PM7:00 PM#4Seizure, moderate, in LR. Gave shot of Diazepam, 5ml, snapped out of seizure.
1/3/2012NANAPhenobarbital raised to 150mg 2x/daily
1/5/2012NANASoft and hard feces found in house.
1/6/2012NANASoft feces found in house.
1/11/2012NA1:00 PMHard feces found in house (LR and office).
1/12/2012NANAHard feces found in house (LR and office).
1/12/2012NAOvernightDeficated in house.
1/13/201211:45 AM11:45 AM#5Found on bed excessively drooling and slightly twitching. Believed to be at end of seizure.
1/13/20128:05 PM8:07 PM#6Seizure, mild, in LR. I was eating popcorn, went to give Cletus a piece, Cletus had a seizure. Wanted the piece right after seizure ended.
1/15/20126:00 PMNACletus being very clingy (noticed as a sign leading up to a seizure within 48 hours).
1/16/2012NA2:00 PMHard feces found in house (Dining Room).
1/16/20126:00 PM7:00 PMCletus still being extremely clingy and licking a lot.
1/16/20127:55 PM8:00 PM#7Seizure, mild - moderate, in kitchen. Cletus stayed on floor for 10 - 15 minutes after which is very long for him. Seemed very disoriented, did not want to move.
1/17/20121:00 PM4:00 PMBrought Cletus into UF Vet Emergency. Kept overnight in ICU for observation on seizure watch.
1/17/20127:11 PMNAER Doctor called, Cletus drooling extensively, head tilting to left, stargazing, miss-stepping on left side. Will be transferred to neurology in morning.
1/18/20128:30 AMNAUF Neurology (#PHONE#) - Student #NAME# called. #NAME# will be handling Cletus.
1/18/20129:52 AMNA#NAME# called. Does not look like Idiopathic epilepsy. X-ray and Ultrasound scheduled for 2:00PM today. MRI, spinal, and other tests scheduled for 1/19/12. Cause could be tumor, cancer, encephalitis, thyroid. Cost should be around $2,500.
1/18/20124:00 PMNAMet with #NAME#. 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.
#1 - Ask about future issues due to nodule (See #1 below).
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 were phenobarbital not working for Cletus. If need to, potassium bromide next drug of choice combined with phenobarbital.
#2 - Ask about Sodium Bromide instead of potassium bromide to help avoid GI issues and possible risk of megaesophagus (enlargement of esophagus)
(See #2 below).

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.
1/18/20126:45 PMNA#NAME# called. MRI set for 9:30AM 1/19/12. UF will call prior to administering anesthesia and after procedure is completed.
1/19/20128:30 AMNA#NAME# called. Cletus still has head tilt. Getting ready for MRI now. Will call with results around 10:30 - 11:30AM.
1/19/201210:00 AMNA#NAME# called. Found congenital hydrocephalus (fluid on brain). Meds to treat and keep on pheno. Will now do spinal tap to rule out bacterial infection. Will call back after procedure.
1/19/201211:20 AMNA#NAME# called. Spinal tap went well, should have resultz this afternoon. P/U Cletus at 4:00PM. Fluid in front part of brain - looks like direct cause of head tilt. #3 - Ask about prognosis (See #3 below).
#4 - Ask about getting off pheno after time
(See #4 below)
.
#5 - Ask about excitement and/or rough play with Magnum
(See #5 below)
.
#6 - What to expect from steroids?
(See #6 below)
.
#7 - How long for results?
(See #7 below)
.
#8 - Follow up?
(See #8 below).
1/19/20124:00 PM5:00 PMMet with #NAME#.
#1 - Measure in 3 to 4 months (Mid-April to Mid-May time frame).
#2 - No, they would split dose in half and give meds with food.
#3 - Cletus should live a long, healthy life and pass from something unrelated to congential hydrocephalus.
#4 - Most likely never off pheno. We may be able to try if Cletus does not have a seizure for a long time.
#5 - Cletus can do all the things he used to do as long as he wants to.
#6 - Will eat and drink more, weight gain.
#7 - Could be days, weeks, months, different per dog.
#8 - Instructions on release paperwork. MRI if necessary.
1/19/2012NANAMeds will be Prednisone - pulse dosing, Prilosec - long term, 2 weeks on, 1 week off, and Pheno - long term.
1/20/20128:00 AM5:00 PMCletus spent day at Hilltop.
1/20/201210:30 PMNAUrinated in DR after coming inside.
1/21/20124:40 AM4:40 AM#8Mild 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…
1/21/20124:40 AMNAUrinated in DR.
1/21/201210:25 AM10:25 AM#9Mild - 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.
1/21/20122:30 PMNA#NAME# called, she spoke with #NAME# at UF who should be calling after talking with #NAME#. If Cletus has another, contact UF Emergency, ask for #NAME# or bring Cletus in to UF Emergency. #NAME# will call in regard to
#9 - How many seizures within how many hours is too many.
(See #9 Below)
1/21/20125:10 PMNA#NAME# called. She spoke with #NAME# 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 #NAME# did not state. #NAME# stated if he has 2 more, 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.
1/21/20126:10 PM6:11 PM#10Moderate - 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.
1/21/20127:00 PM10:00 PMUF Vet ER. Student - #NAME# and #NAME#. They are adding potassium bromide to Cletus' mix of drugs. Giving a boost of phenobarbital tonight and starting on potassium bromide.
1/22/20128:00 AMNA#NAME# called. Cletus did fine throughout night, no seizures. He is drooling some which may be caused by the potassium bromide taste. P/U Cletus at 6:00PM.
1/22/20126:00 PMNAPicked up Cletus from UF Vet ER/ICU. Met with #NAME#. Cletus has had diarrhia with blood in it. Could be due to potassium bromide. Could be due to change of food in ER/ICU.
#10 - Asked about possibly draining some fluid (10cc's or so) through spinal tap. (See #10 Below)
. #11 - Asked about possibly keeping Cletus on Prednisone long term as CSF is likely to just build back up on brain after off of drug. (See #11 below). 
#NAME# could not answer either question. Call #NAME# and ask questions. Added potassium bromide and metronidazole to drug mix.
1/23/201212:30 PMNA#NAME# called. #9 - More than 1 seizure in 24 hours is too many. After 1st seizure, give Cletus Diazepam, if 2nd seizure occures, bring into ER.
#11 - Prednisone long term could cause other problems but may be a course of action. We will see how meds work and go from there.
1/24/20129:30 PMNACletus 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.
1/25/20121:30 PMNA#NAME# called. Cletus was re-diagnosed by #NAME# (Head of Neurology) and #NAME# (Head of Radiology) with Open Lipped Schizencephaly (two halves of cranium did not seal) (spine still open, kind of like spina bifida). Asymmetric. Never reported before in a dog.
#10 - #NAME# spoke with #NAME# and #NAME# and do not recommend doing spinal tap to take out CSF as dogs product spinal fluid faster than humans.

#NAME# will call to set up Cat Scan for Monday or Wednesday. UF will write off CT and Craneoplasty if needed.
1/25/20123:30 PM5:00 PMMet with #NAME#. Asked #NAME# to find out course of action.
#12 - How and when do we find out if meds are working to lower the CSF pressure?
(See #12 Below) #13 - What about the possibility of open shunt procedure to lower pressure gradually? (See #13 Below).
1/25/20127:00 PMNACletus is looking and acting much better than he did yesterday. Much more alert and active.
1/26/20123:30 AM3:31 AM#11Mild Seizure (3 out of 10) in Bedroom while sleeping. Lasted 1 minute. Snapped right out afterward.
1/26/2012NANAOther Questions:
#14 - Is it safe to give Heartworm/Flea and Tick Medications? (See #14 Below)

#15 - Anti-Syphen Valve Shunt?
(See #15 Below)

#16 - When is CT?
(See #16 Below).
1/26/20123:30 PM4:45 PM#NAME# called.
#12 - Potassium Bromide levels could be measured in 3 months.
#13, #15 - Try to lower with meds if possible and we will visit shunt options as the need arises.
#14 - 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.
#16 - CT will be scheduled for Monday, 2/6/12. Someone will be calling to schedule a time.

A good idea would be to give Cletus yogurt.
1/26/20125:30 PMNAGrowled at another male today while at vet. 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 vet 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?
1/26/20129:30 PMNACletus 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.
1/26/201210:00 PMNAMagnum switched with Cletus. Went from playing to being cautious with Cletus.
1/26/201211:10 PM11:11 PM#12Seizure 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).
1/27/20123:11 AM3:12 AM#13Seizure in Master Bathroom. Lasted 1 minute. (2 out of 10). Snapped right up after seizure.
1/27/20126:27 AM6:28 AM#14Seizure in bed (while sleeping). Lasted 15 - 20 seconds. Gave shot of Diazepam 5ml. (3 out of 10).
1/27/2012NANAQuestions: #17 - Why seizures only at home? (Unknown) #18 - Why early evening to early morning and weekends or weekdays while I am home? (Unknown) #19 - Why few days then series? (Trying to stop the seizures but they are still increasing in frequency) Increasing in frequency and multiples.
1/27/20127:30 AMNAGrowled at female while checkinto into UF Vet ER (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?
1/27/20127:30 AMNABrought into UF Vet ER. #NAME# and #NAME# called. #NAME#/#NAME#/#NAME# saw Cletus when he came in.
1/27/201211:30 AMNAMet with #NAME# and #NAME#. 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.
1/28/20126:45 PMNACletus 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. 
1/29/20124:50 PM6:20 PMWent out to dinner and did a little food shopping, was out of house 1 1/2 hours. When came home Cletus had deficated in house in LR (very wet) and urinated in house in back hallway.
Oddities / Things we have noticedCletus has had noticeable trouble with his hindside in regard to getting up.
Cletus has been trying to bite his backside like it is itching him, he also likes to have his butt scratched.
Cletus has become more aggressive towards men that he does not know. We have had Cletus since he was 6 weeks old, no reason for any aggression at all.
Cletus is extremely smart but seems to be somewhat confused at times.
Oddities / Things the Doctors have noticedHead tilt to the left. When head straightened manually, eye drops.
Crossed paws when walking or laying down.
Miss-stepping to the left.
Stargazing.
Excessive drooling.

2/22/2012 - 1000 Visitors

2/22/12 - Cletus' blog hit 1000 visitors overnight and Cletus and I thank each and every one of you for your support.  Through this blog and through my research I have been reading about and meeting amazing people and parents of beautiful children affected by schizencephaly.  I have been reading about and speaking to people whose loved pets are affected by seizures caused by epilepsy and/or congenital or non-congential hydrocephalus. 

There is so much we all can do to help each other.  The first thing we need to do is spread the word about these disorders.  The general veterinary community is totally unaware of schizencephaly as is the world in general.  Although this disorder is rare, the people it affects are real and special and fantastic, and they each deserve our attention, respect, love, and undertanding.

For those pet parents whose baby is suffering from seizures, I am going to try to attach the spreadsheet I kept for Cletus as this really help us and the doctors.  It is a great way to help track your pet's condition.

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 somewhere between 1,150 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.  Contact your local news organization about Cletus or have your local news organization contact me directly at dsilber27@hotmail.com

Thank you for your support,

Doug & Cletus

Tuesday, February 21, 2012

2/21/2012 - Great site to help raise schizencephaly awareness

2/21/12 - Fantastic site for parents dealing with schizencephaly and to help raise awareness about schizencepahaly Tricia SchizencephalyAwareness Dennis
Schizencephaly awareness needs to be raised for both humans and animals.  Please take the time to visit the above site or use the link on the right of the page. 

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 somewhere between 1,150 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.  Contact your local news organization about Cletus or have your local news organization contact me directly at dsilber27@hotmail.com

Thank you for your support,

Doug & Cletus

Monday, February 20, 2012

2/20/2012 - The Word of Cletus is Getting Around

2/20/12 - Cletus' blog has now been viewed by people from 6 out of the 7 continents (come on Antarctica!!).  Although the word of Cletus is slowly becoming known, we could really use your help in spreading the knowledge of Cletus' case.  The faster we can impart the knowledge of this disorder to vets in the U.S. and the world, the more pets we can save.

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 somewhere between 1,150 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.  Contact your local news organization about Cletus or have your local news organization contact me directly at dsilber27@hotmail.com

Thank you for your support,

Doug & Cletus





Saturday, February 11, 2012

2/11/2012 - We need help to raise awareness

2/11/12 - With the confimation of Cletus' open lipped schizencephaly (also called split brain), it is time to raise awareness of this disorder in the veterinary community to help other pets who must be suffering from the same affliction. 

I have spent many hours doing research into this disorder to help my TeeTee and have learned a great deal about the condition. Cletus was first diagnosed with epilepsy as most likely many animals are being that the symptoms of schizencephaly can be confused with epilepsy. When the symptoms such as seizures, confusion, disorientation, and anxiety increased even with the medications, I believed that Cletus had a brain tumor or brain cancer and brought him into the emergency room.

The doctors still believed it was only epilepsy and possibly an inner ear infection but decided to watch him overnight. During that night, Cletus began to show signs of neurological trauma such as stargazing (staring up at nothing), having a head tilt to the left, miss-stepping to the left while walking, and it was also noticed that he crossed his paws while laying down. All of these signs made the doctors believe that an ultrasound, x-ray, MRI, and spinal tap should be performed. 

The MRI showed an extensive amount of cerebrospinal fluid (CSF) in and on his brain and Cletus was re-diagnosed with congenital hydrocephalus. Upon further review of the MRI, it was determined that Cletus had open lipped schizencephaly, the first known reported case in a canine, and the recent cat scan confirmed this diagnosis.

We are very lucky to have the medical staff that we do who recognized Cletus' condition. Cletus can't be the only one with this condition but most vets have not even heard of this disorder and would not know how to treat it. 

Please help us help Cletus and help us raise awareness of schizencephaly in the veterinary community to save other animals. Donate to Find A Cure For Cletus through the tab on the right or contact your local media to contact me.

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.

Thank you for your support,

Doug

Monday, February 6, 2012

2/6/2012 - Open Lipped Schizencephaly Confirmed

2/6/12 - Cletus had his cat scan today and he did very well... that's my boy!! 

Being that we were told Cletus had open lipped schizencephaly and he was the first reported case with this diagnosis in a canine, I was half expecting the cat scan to prove a different diagnosis but to my surprise, the cat scan confirmed the open lipped schizencephaly (I am getting very good at spelling this now btw). 

It is very strange to have a pet with such a unique issue and it is hard to believe that Cletus is the only one out there with this disorder.  There must be other animals who have suffered or are suffering from open or closed lipped schizencephaly that were/are either misdiagnosed or passed away before their owners or the vets figure out what was/is truly wrong. 

Part of our job is to get Cletus better and he is doing very well on his medications.  The other part of our job must be to get the word out about Cletus to inform pet owners and vets about open and closed lipped schizencephaly so pets like Cletus are taken care of properly to live long, healthly, and happy lives.

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.

Friday, February 3, 2012

2/3/2012 - Looking for Media Help!

2/3/12 - Looking for Media Help.

Cletus' blog now has over 350 hits from 3 continents including people from as far away as Australia. I have been in contact with a Neurologist from the University of Philadelphia who would like to look at Cletus' MRI to give his input and I have also been contacted by several local and national pet organizations.

Cletus' cat scan is Monday and with those results, the focus will switch to getting Cletus some media attention to help other pets and pet owners who may be facing similar issues. If anyone has any information to help get the word out to the media, please pass Cletus' information on to them or pass information to me to contact.

Thank you.

Thursday, February 2, 2012

2/2/2012 - 6 days without a seizure (pic attached)

2/2/12 - Cletus has now gone 6 days without a seizure... I hope I'm not jinxing him by posting this.  His Cat Scan is this coming Monday.  I still think a dog getting a cat scan sounds funny.  I wonder if they use a mouse to check the cat scan for the dog.  Below is a picture of Cletus with his brother, Magnum.  This is the beautiful boy we are fighting for...