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We were told that our dalmatian Domino probably has this disease.

I would like to know if anyone has a dog with this disease and what they are doing to help their dog.

Thank you
Shirley

>>We were told that our dalmatian Domino probably has this disease.
>>
>>I would like to know if anyone has a dog with this disease and what they are doing to help their dog.
>>
>>Thank you
>>Shirley

I hadn't heard of it until I did a google search. For support, I would try all the supplements that support the nervous system, try a homeprepared diet, and consult a holistic/homeopathic vet

http://bdsra.org/
http://www.medhelp.org/lib/batten.htm

Thank you for the links and info.

The Canine Genetics Diseases website has some information but not how to take care of your pet.

http://www.caninegeneticdiseases.net/CL_site/mainCL.htm

The neurologist did say that coenzyme Q10 may help but they want us to wait. We're to go back for ERG and EEG in two weeks after the anesthesia is out of his system.

In Dalmatians its suppose to show up when they are between 6 months and 1 year old. We only starting noticing problems in Domino a few months ago. He was really sharp and quick up until that time. We're trying to figure out what may have been the trigger to all this.

Shirley

I didn't see where you posted your boy's age anywhere?

Has he been vaccinated within the last three months? Any tick exposure? Vaccinations can cause all sorts of nerve problems, and can trigger all sorts of disease processes that an animal might be susceptible to. Most vets really haven't done the study of the literature, so depending on your vets, this may or may not be considered.

If there is exposure to ticks, I would verify through a tick panel that there isn't a tick disease -- tick disease can cause some pretty severe neurological symptoms in some, while others it may present as more arthritic symptoms, while in others it can be silent and deadly.

Raccoon roundworms are also said to attack the nervous system, but I've never heard of a case with progressed symptoms -- something only I've read in the more academic sense since my dog had these when she was a pup.

My dog has a nueromuscular disease induced by her lyme vaccine (diagnosed through Cornell) which we have controlled for the last 8 years or so. If you get to the point where you are going to treat with diet and supplements and would like to hear more, let me know. You may need to clikc on my name and send an email, as I don't check this site that frequently.

What symptoms have you seen in your boy?

Domino just turned 5 years old.

This all began end of March/first of April. He was highly active, zipping here and there. Running so fast he'd slide across the floor into things. He and our dog Meagan are competitive. They both tried for the doggy door at the same time. She made it he didn't. He ran into the door and just sat there for a moment. He began arching his back, having trouble lying down, eating his food funny. I thought he had hurt himselft. Then he had an an accident in the house. Which he has never done.
We scheduled an appointment with the vet (April). The moment she walked into the exam room he began praying. She said it looked like he was having abdominal pain. An x-ray showed that he had pebbles in his intestines (we had just put those down in the path that morning), a urniary infection and bladder stones. An enema cleaned out the pebbles and he had surgery for the bladder stones. They were sent to a lab to be checked. He is now on Hills U/D.
He was still having problems after this. My husband thought it was his eyes, I thought ears. Domino went back to the vet. She saw hemmoraging from the vessels in his eyes and he had an ear infection. She did another complete blood workup, thyroid and Ehrlichia titer. The titer was negative, the only problem with blood was his cholesterol was a little high. She recommended an opthalmologist.

The day before we were to see the ophalmologist he began standing on top of his paw (May). The ophalmologist said his optic nerves were swollen and thought this was a brain problem. He did a spinal tap. He was put on Prednisone and an antibiotic. Tests came back no infection, mennigitis or cancer. But now they thought it was a brain tumor. He was now alternating standing on both front paws. Stumbling. Still having some trouble with eyes. Falling off the couch. The Prednisone made him throwup.

Our vet gave us the name of a neurologist but he was no longer in practice. We called UC Davis they said it would be three months before we could get in. We called the opthalomogist and he was able to get us in the next day.

(June) After the UCneurologist checked him out he also thought Domino had a brain tumor. He asked about seizures but as far as we know he hasn't had any. Domino had more bloodwork, urine test, another spinal tap, saw another ophalomologist and then an MRI. They attempted an ERG but couldn't do it and suggested that we come back for that and an EEG in a couple of weeks. He did not have a tumor or injury. The MRI did show some problems with his brain and they believed he had a degenerative brain disease. They submitted multple tests for degenerative and storage diseases. We were told it was probably Batten disease and that there isn't a cure. They are born with it.

We asked about nutrition and supplements and they thought Coenyzme Q10 might help. But didn't want us to use it until they were sure. We're to call Monday with update of his condition.

Our primary vet called yesterday she had received reports from neurologist. She did some research on the disease. She had not seen it before. Because there is no cure, she didn't think we should put him through more tests and think of quality of life. She did ask if they had given us information for nutrition and supplements.

As the anesthesia has left his system he is having more control. He has a facial twitch that includes his ear and neck, stumbles, has trouble getting onto couch, doesn't want to play much, sleeps more, paces, sometimes just stops and stares. He crosses his feet in front of himself or stands on them, stands on paws. Sometimes he starts to fall over. Hungry all the time. Follows us every where.
He has more trouble in the evenings than in the morning.

His last vaccinations were in September of last year. He has been on Heartguard Plus and advantax for fleas. We have not seen any ticks this year.

This disease is suppose to show up in Dalmatians between the ages of 6 months and 1 year. They are usually put to sleep between 1 1/2 and 8 years old. We're trying to figure out what the trigger was.

Our 12 year old Collie/Shepherd mix has more energy than Domino does right now. She suffers from arthritis, spondylosis, hypothyroid and kidney insuffiency.

Yes, We are interested in diet and supplements. Anything to slow the progress of this disease and make his life better.

We are also checking into shoes that would help keep his feet upright.

Thank you,
Shirley

If you went to UC Davis, then we live in the same part of the country...I live just outside of Sacramento.

You know, I would run this by your vet, whether or not doxycycline would negatively affect a dog with Batten's Disease, but here's a thought that's out on a limb. Ticks can cause disease that affect the nervous system....I've seen all the symptoms that you have described in dogs with lyme. In CA, about 20% of humans have lyme that doesn't show on standard tests because of some of the strains of lyme that we have out here. If you try doxy (5 mg/lb twice a day), you should know within 3 days if you get a response. I've been on a tick list for probably 6 years now, with a couple of great vets and lots of wierd cases...I know way too much about that stuff. That would be a long shot, but one I would want to try *if* I knew the antibiotic wouldn't negatively affect the condition.

The "paw under" is very telling...I would think that the supplements that help DM would be helpful here. Dr. Clemmons has been studying this type of neuromuscular disease for years and has a supplement program....below is a link to it. Browsing the supplement list, I would start with things like..... a B-50, vitamin E with mixed tocopherols (Twinlab super E complex is what I use) and once a week I give a dry E with selenium, omega-3 fatty acids, and CoQ-10 (Costco carries an economical version). I would start with those before adding any herbs, etc., just to make sure those are well tolerated. I buy my vitamin E pills from www.vitacost.com for the best prices, and I have never had a problem with expiration dates, shipping,etc.

Personally, I would also add a digestive enzyme (to help absorb fats, etc.) and also kelp a couple of times a week to help support the thyroid and add a natural form of minerals.

I don't know how you feel about chiropractic work, but it seems to me that a dog with any neurological disease would benefit from keeping their spine aligned so that the nervous system can better do their job. Most conventional vets won't think much of this idea, and UCD probably doesn't either. Depending on where you live, there may be one close. My dog with the neuromuscular disease doesn't do well without it....the one I use is very gentle -- otherwise my girl wouldn't allow it.

If you're up to it, I would consider feeding a homecooked diet. I would go to www.doggiedietician.com and even have a consult with her to put together a balanced diet to start with....I'm not familiar enough with stones to be able to help there. At the very least, get on the email list (if you're interested) because there is a wealth of information there and a great place for support if you choose to make the leap.

Whatever you decide to do, best of lucky....this sounds heartbreaking.

......
http://neuro.vetmed.ufl.edu/neuro/DM_Web/DMofGS.htm

geez, please ignore all the wierd typos...when I type fast, my fingers seem to have a life of their own.

I really need to learn to proof-read!

Thank you, Thank you. This is a big help.
I am going to talk to my vet about this.

I live 20 miles north of Fresno in the San Joaquin Valley.

I'll let you know what happens.

Thanks again.
Shirley

I was just re-reading your previous post. It seems that the only test that showed something was the MRI? And it seems to me that you're thinking that when he hit the door trying for the doggie door might be a potential trigger? If that is so, I might more seriously think about having a chiropractic evaluation. Not that it would solve everything, but it might help improve some of the contributing factors.

My dogs have all sorts of wierd symptoms when they are out of adjustment. My GSD has pannus of the cornea and the 3rd eyelid and being out of adjustment will cause it to flare up (so will using either a head halter or a regular collar, I have to use a harness). If his neck is out of adjustment will have urination problems. And if he is out in a certain way, he will just sit and pant, and I have to put up with that until it is time for our next appointment.

My mixed breed (rat terrier/dobe mix) with the neurological disease will get stumbly, drag her back leg some (I hear her nails scrape on the cement), her front legs will shake, her left eye will not open all the way. Before I started with the chiro, she would cringe if you got within 6 inches of her, but now she can tolerate touch, and even a pretty heavy touch.

I knew someone that had a sheltie with an aggressive tumor in his jaw, and adjusting his neck was a critical piece of his treatment.

If you and your vet think you want to try this, the chiropractor I go to is in Lodi. She may know someone closer to you, but I know that this chiro I would recommend hands down....if she is gentle enough to treat my girl, she can treat any dog (as compared to the the GSD who could probably tolerate any chiro). I also know of other cases that she has treated -- from top show dogs to very old dogs with various, very serious problems. In fact, she's helped some dogs that the vets at UC Davis said should be put down because conventional medicine couldn't help.

There are a couple of different types of chiropractors. First there are animal chiros that are AVCA certified and those that aren't. Never go to one that isn't (some of them are VOM practitioners...stay away). The AVCA training is very thorough and requires continued training, etc. Of the AVCA chiropractors, some are vets, and some are people chiros. The one in Lodi is a people chiro who went through the training years ago so she could treat one of her wolfhounds. So she treats both animals and humans (dogs and me get an adjustment when we are there ). However, because she is not a vet, she does require a vet referral -- that wouldn't be a problem in your case since you're working very closely with your vet.

*If* you decide to try this, or to call and have a conversation with the chiro, let me know and I'll give you her number, etc.

I understand that you may not decide to do this until down the road a bit, if at all, so do email me: indyeve@calis.com or track me down here: http://www.germanshepherds.com/ubbthreads/ubbthreads.php
if I'm not around.

I'm very interested to find out what you try and how your boy does -- I sure do hope that you kind find something that he responds to.
http://www.avcadoctors.com/

Thank you so much again for the information.

David was really interested in your post with all the supplements. We're taking a copy to our vet's office Tuesday. We also have a call in to the neurologist.

Domino's old food had a lot of antioxidants in it. Because of the bladder stones he was put on Hills Prescription U/D. It has alot less protein than the old food. We don't know if that makes a difference.

A year ago we talked to a Chiropractor about Domino. He absolutely hated to have his tail touched. We had xrays done and they said his spine was straight. The tail thing got really bad. He'd be sleeping and wake up growling at his back end. No one was around him. That Chiroprator told us that if the x-ray showed his spine was aligned that he didn't need adjustments. He thought he was having nightmares. Eventually Domino stopped doing it. This last xray showed his spine was aligned so David doesn't think he needs it yet. I will be asking for your chiropractic when we decide to take him.

On the children's website for this disease they said that physical therapy and occupational therapy may help. So we've been doing things to keep him active. They also said vitamin E & C may help with a diet low in A .

We've been doing Ttouch. He loves it. And trying some exercises. There's also a new veterinary medical spa that opened close by. They have water therapy. I'm also going to ask our vet about seeing a veterinary nutrionist.

I did find one person who had a dog with this 3 years ago. She was put to sleep shortly after diagnosis. Her disease was in the advanced stages.

My grandmother raised German Shepherds. We had one when I was little, Theodore Frechis Von Linstrum. I probably spelled his name wrong. He was related to Bullet and Rin Tin Tin. We thought Meagan was a german shepherd when we adopted her. But we've been told she's Belgian Malinois and Egyptian Pharaoh Hound. David was a little disappointed.

Thank you again. I will keep you updated.
Shirley

I think that there are alot of things that don't show up on xrays. In fact, for our GSD, there are parts of his spine that appear aligned, but they are not at all mobile, so the chiro does do mobilization on him every time. It is getting better, swimming helps enormously, but we don't have frequent access to that.

I wonder why a diet low in vitamin A is recommended?

Have you been doing any of the Ttouch tail pulls? Sometimes instead of the gentle pull, you can do a gentle push into the body and it will release some chronic things.

It's very cool to be in the "presence" of someone that knew a dog related to Rin Tin Tin . Max is our first GSD and now I know why they are such a special breed. By the way, I love the Malinois too -- I fostered one for about a week once -- and the pharoah hound is a piece of history right there!

I did find this:

Assessment of dietary therapies in a canine model of Batten disease.
Eur J Paediatr Neurol. 2001;5 Suppl A:151-6.
Siakotos AN, Hutchins GD, Farlow MR, Katz ML.
Department of Pathology, Indiana University School of Medicine, 635 Barnhill Drive, Indianapolis, IN 46202, USA. asiakoto@iupui.edu

The neuronal ceroid lipofuscinoses (NCLs) are inherited neurodegenerative diseases that occur in a number of animal species, including dogs. A study was conducted to determine whether the resupply of nutrients lost in NCL English Setter dogs would modify the course of the disease. Carnitine and polyunsaturated fatty acids have been reported to be reduced in NCL English Setters. Therefore, the normal laboratory diets of NCL dogs were supplemented with carnitine, fish oil and corn oil and the disease progression was compared with that of an untreated litter mate. The following specific prognostic indicators of NCL were monitored: cognitive function, brain atrophy, brain glucose metabolism and lifespan. Carnitine, with or without lipid supplements, dramatically delayed the progression of cognitive decline in NCL dogs. When fish oil and corn oil only were supplied, brain atrophy was reduced. A combination of all three supplements preserved cognitive function and increased lifespan by 10%. However, brain glucose hypometabolism and cerebral atrophy were not reduced. The results in this study indicated that the effectiveness of therapeutic interventions can be assessed by non-invasive methods at a relatively early stage of the disease process. Our study suggests that dietary supplementation with carnitine is a promising new approach for delaying or preventing the cognitive decline in dogs, and perhaps, with human NCL patients.

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Perspective of biochemical research in the neuronal ceroid-lipofuscinosis.
Am J Med Genet. 1992 Feb 15;42(4):519-24.
Rider JA, Dawson G, Siakotos AN.
Children's Brain Diseases Foundation, San Francisco, CA 94117.

The search for biochemical abnormalities in the neuronal ceroid-lipofuscinoses (NCL) or Batten disease was initiated with the discovery of normal levels of gangliosides in juvenile amaurotic idiocy. The primary goal of most biochemical studies has been to discover the unique biochemical marker for carriers and at-risk individual. Ceroid, the singular pathomorphologic trait of NCL, was isolated and shown to differ from a similar but normal product of aged cells, lipofuscin. In spite of the availability of stored product, the chemical analysis of ceroid has not elucidated the unique biochemical defect in the NCL, as has been the case for other lysosomal storage disorders. The NCL were thought to be a result of lipid peroxidation because ceroid is also found in disorders of impaired vitamin E metabolism or results from a diet deficient in the antioxidant, vitamin E. In addition, tissue analysis indicated losses of polyunsaturated fatty acids in affecteds and carriers, as well as the presence of a secondary product of lipid peroxidation, 4-hydroxynonenal, in affected and carrier NCL dogs. With the exception of a fluorescent compound isolated from retinal ceroid, studies aimed at discovering the disease-specific fluorophores of ceroid have been largely inconclusive. The discovery of elevated dolichols in urine and brain tissue of NCL patients led to another hypothesis, that the basic biochemical defect in NCL involved the metabolism of dolichols and retinoids. However, the more recent view is that dolichol metabolism is secondary to the
unknown NCL lesion.(ABSTRACT TRUNCATED AT 250 WORDS)

==================

Therapeutic modification of membrane lipid abnormalities in juvenile neuronal ceroid-lipofuscinosis (Batten disease).
Am J Med Genet Suppl. 1988;5:275-81.
Bennett MJ, Hosking GP, Gayton R, Thompson G, Galloway JH, Cartwright IJ.
Department of Chemical Pathology, Sheffield Children's Hospital, United Kingdom.

Five patients with juvenile neuronal ceroid-lipofuscinosis, who were shown to have absent or reduced serum prebetalipoprotein and a deficiency of polyunsaturated fatty acids in erythrocyte membrane lipids, were treated for a period of one year with supplements of fish oil extract (rich in omega-3 fatty acids) and encouraged to increase dietary intake of corn oil lipid (rich in
omega-6 fatty acids) in an attempt to promote incorporation of these fatty acids into membranes. After one year there was a significant increase in omega-3 fatty acids (P less than 0.05) and in the total polyunsaturated fatty acids (P less than 0.02) in erythrocyte membranes but no change in the incorporation of omega-6 fatty acids. The patients were assessed clinically, psychometrically and neurophysiologically before and after the supplementation. No significant changes were noted after one year of treatment.

[Lisa note: I wouln't have added the corn oil as most 0-6's promote inflammation]

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I'm wondering if high doses of B-12 (of the methyl-whatever form) would also be helpful here to suport the nervous system.

I'll tell Dave what you said about the x-rays.

Thank you for the articles. I don't know what the vitamin A has to do with it either. But I do know that they added it to the U/D diet and his symptoms seemed to get worst after the surgery and food change. It could of been the anesthesia too.
Carnitine has been added to the U/D. Some dalmatians that have been on low protein diets for a long period of time develop cardiomyopathy and this is suppose to help.

Yes, we have been doing tail pulls. We'll try the push. Domino loves Ttouch. It was amazing the first time we took him to a Ttouch class. He was super hyper and destructive. Domino became our instructor's pet project after he dragged Dave and his chair across the room. By the end of the class he was so relaxed he fell asleep. Next day he was calm. Classmates couldn't believe it. Now he'll practically sit in my lap until I give him a good makeover.

I've been in touch with our instructor and she suggested scrunchies on his legs to help him become aware of his feet. And we're also doing body wraps.

Before Ttouch we had him in a obedience class with a drill sargent. He had Domino doing doggy situps and given condolesences for having a Dalmatian.

Shirley

Some of these obedience instructors drive me nuts.

The Ttouch sounds like it's producing awesome results. Keep up the good work

Lisa