2/28/2012 - Seizure #15

2/28/12 - Cletus just had seizure #15. He is doing ok. I am pretty sure this one was caused by the heartworm medication as checking the dates, he has had seizures after taking this medication like clockwork. Even though they say it is safe for epileptics, it may not be safe for schizencephalic dogs (I think I just came up with a new word and possibly a new medication warning). It is so weird having an animal who is the only one in the world diagnosed with a condition... everything is an adventure...

I know the hospital is going to say that seizures are expected and that we can not correlate it to the heartworm medication but... yes I can.  I gave heartworm meds on 10/31, seizure on 11/1.  I gave heartworm meds on 11/27, came home to a large wet spot in the house on 11/28.  I gave heartworm meds on 12/31, seizure on 1/1.  I skipped heartworm meds for 1/31 for February per vet request.  I gave heartworm meds on 2/27, seizure on 2/28.  Even if we say he did not have a seizure on 11/28, we are still at 75%, that is a very strong correlation to me.  Going to call the veterinary hospital tomorrow to see what we can do about the heartworm medication for next month.

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

2/24/2012 - 4 Weeks Since Cletus' Last Seizure!!

2/24/12 - Today marks 4 weeks since Cletus had his last seizure, or seizure cluster as the case was (3 seizures within 7 hours).  I still find myself on my tippy-toes every time I hear a weird noise or he is out of sight for more than 5 minutes.  I still find myself waking up with every odd creak of the house fearing that he is having another seizure. 

I know to expect more seizures, the doctors said that Cletus will always have seizures, but the thing is that they really don't know.  Cletus is the first of his kind that we know of. 

Someone was setting off fireworks the other night which in the past led to Cletus having a seizure and boy was I watching him close.  Cletus made it through fine.

The next night, we had a thunderstorm, another trigger for Cletus and seizures.  Again, Cletus made it through fine.

I think I am going to have a seizure from stressing out about Cletus before he has another one :) 

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

Puppy Cletus Pic... so many pounds ago

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
DATE	TIME START	TIME END	KNOWN SEIZURE	NOTES
11/1/2011	2:15 AM	2:30 AM	#1	Grand 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.
11/13/2011	8:00 PM	8:05 PM		I 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.
11/15/2011	6:15 PM	6:20 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 min and then got up and seemed fine.
11/16/2011	5:55 PM	6:05 PM	#2	Seizure, no urination. Worse than 1st time. Did not get up for 10 min after seizure.
11/17/2011	NA	NA		Began Phenobarbital 100mg 2x/daily
11/28/2011	NA	4:40 PM		Found large pee spot in office (still wet).
1/1/2012	3:55 PM	4:00 PM	#3	Seizure, mild, in kitchen.
1/2/2012	7:00 PM	7:00 PM	#4	Seizure, moderate, in LR. Gave shot of Diazepam, 5ml, snapped out of seizure.
1/3/2012	NA	NA		Phenobarbital raised to 150mg 2x/daily
1/5/2012	NA	NA		Soft and hard feces found in house.
1/6/2012	NA	NA		Soft feces found in house.
1/11/2012	NA	1:00 PM		Hard feces found in house (LR and office).
1/12/2012	NA	NA		Hard feces found in house (LR and office).
1/12/2012	NA	Overnight		Deficated in house.
1/13/2012	11:45 AM	11:45 AM	#5	Found on bed excessively drooling and slightly twitching. Believed to be at end of seizure.
1/13/2012	8:05 PM	8:07 PM	#6	Seizure, mild, in LR. I was eating popcorn, went to give Cletus a piece, Cletus had a seizure. Wanted the piece right after seizure ended.
1/15/2012	6:00 PM	NA		Cletus being very clingy (noticed as a sign leading up to a seizure within 48 hours).
1/16/2012	NA	2:00 PM		Hard feces found in house (Dining Room).
1/16/2012	6:00 PM	7:00 PM		Cletus still being extremely clingy and licking a lot.
1/16/2012	7:55 PM	8:00 PM	#7	Seizure, 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.
1/17/2012	1:00 PM	4:00 PM		Brought Cletus into UF Vet Emergency. Kept overnight in ICU for observation on seizure watch.
1/17/2012	7:11 PM	NA		ER Doctor called, Cletus drooling extensively, head tilting to left, stargazing, miss-stepping on left side. Will be transferred to neurology in morning.
1/18/2012	8:30 AM	NA		UF Neurology (#PHONE#) - Student #NAME# called. #NAME# will be handling Cletus.
1/18/2012	9:52 AM	NA		#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.
1/18/2012	4:00 PM	NA		Met 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.
1/18/2012	6:45 PM	NA		#NAME# called. MRI set for 9:30AM 1/19/12. UF will call prior to administering anesthesia and after procedure is completed.
1/19/2012	8:30 AM	NA		#NAME# called. Cletus still has head tilt. Getting ready for MRI now. Will call with results around 10:30 - 11:30AM.
1/19/2012	10:00 AM	NA		#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.
1/19/2012	11:20 AM	NA		#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).
1/19/2012	4:00 PM	5:00 PM		Met 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.
1/19/2012	NA	NA		Meds will be Prednisone - pulse dosing, Prilosec - long term, 2 weeks on, 1 week off, and Pheno - long term.
1/20/2012	8:00 AM	5:00 PM		Cletus spent day at Hilltop.
1/20/2012	10:30 PM	NA		Urinated in DR after coming inside.
1/21/2012	4:40 AM	4:40 AM	#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…
1/21/2012	4:40 AM	NA		Urinated in DR.
1/21/2012	10:25 AM	10:25 AM	#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	2:30 PM	NA		#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)
1/21/2012	5:10 PM	NA		#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.
1/21/2012	6:10 PM	6:11 PM	#10	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	7:00 PM	10:00 PM		UF 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.
1/22/2012	8:00 AM	NA		#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.
1/22/2012	6:00 PM	NA		Picked 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.
1/23/2012	12:30 PM	NA		#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.
1/24/2012	9:30 PM	NA		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.
1/25/2012	1:30 PM	NA		#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.
1/25/2012	3:30 PM	5:00 PM		Met 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).
1/25/2012	7:00 PM	NA		Cletus is looking and acting much better than he did yesterday. Much more alert and active.
1/26/2012	3:30 AM	3:31 AM	#11	Mild Seizure (3 out of 10) in Bedroom while sleeping. Lasted 1 minute. Snapped right out afterward.
1/26/2012	NA	NA		Other 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).
1/26/2012	3:30 PM	4:45 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.
1/26/2012	5:30 PM	NA		Growled 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?
1/26/2012	9:30 PM	NA		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	10:00 PM	NA		Magnum switched with Cletus. Went from playing to being cautious with Cletus.
1/26/2012	11:10 PM	11:11 PM	#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).
1/27/2012	3:11 AM	3:12 AM	#13	Seizure in Master Bathroom. Lasted 1 minute. (2 out of 10). Snapped right up after seizure.
1/27/2012	6:27 AM	6:28 AM	#14	Seizure in bed (while sleeping). Lasted 15 - 20 seconds. Gave shot of Diazepam 5ml. (3 out of 10).
1/27/2012	NA	NA		Questions: #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.
1/27/2012	7:30 AM	NA		Growled 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?
1/27/2012	7:30 AM	NA		Brought into UF Vet ER. #NAME# and #NAME# called. #NAME#/#NAME#/#NAME# saw Cletus when he came in.
1/27/2012	11:30 AM	NA		Met 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.
1/28/2012	6:45 PM	NA		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.
1/29/2012	4:50 PM	6:20 PM		Went 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 noticed				Cletus 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 noticed				Head 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.