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Neuronal Ceroid Lipofuscinosis In A Dog

by Dr. Krisi Erwin - December 30, 2019 View Case Report

Hello- I don't know if I've posted this multiple times and just can't see it? I'm trying to find information to see if anyone here has seen Neuronal Ceroid Lipofuscinosis in any patients? This is a new dog for an old client that I have not seen yet as a patient. I believe she will be open to me seeing him and trying herbs and/or acupuncture. I can report back after that time re: pulse/tongue/active points. I did meet Doug after his adoption as a friendly meeting/not a doctor visit. He's a hard core fire personality- mom describes him as exuberant joy. Does nothing slowly. Always at a high simmer. He will have bursts of rage when it comes to dogs but is friendly with people. He is always on the move. He has needed to have both knees repaired for CCL since she adopted him a few years ago. I am trying to figure out if I can help him? I am thinking yang excess, upward wind? I would appreciate any help or advice!!!

Sincerely,
Krisi

The following are Doug’s current symptoms:

He shakes about 20 times a day and his eyes roll back into his head about 15 of those times.

Sometimes he falls over, sometimes not. That has not changed much since I first noticed it.

This is by far the hardest part to watch at this point. There is a part of me that wants to look away, but I owe it to him to watch every single one and count them out for our documentation.

He is wobbly on softer surfaces.

He stumbles sometimes when he is going faster than a normal walk pace.

I can tell when he is having dizzier days than others. On those days he is a little out of it. He tends to stay close to me those days. He also stares into my soul on those days and I know he knows I know. I stay close to him too.

There have been two shakes to date that I have seen where he froze for about 3 seconds after it ended. I don’t think he could move for those few seconds, but then he was fine.

He has had 2-3 bad days. When he can’t walk in straight line, more like he’s in a fun house. I mean our house is fun, but…

He is on a few new supplements (CoQ10 and Super B Complex) to maybe help. He is also on a motion sickness drug. I have been giving it to him in the morning but I am going to move it to dinner because he wakes up dizzy and I think it might wear off during the night.

by naturevet

January 2, 2020

Hi Krisi,

It does sound like a Yang rising problem. There are two main differentials that would also be consistent with the aggression issues and the CCL laxity: Blood deficiency and Shao Yang dishamony. The latter should be responsive to Shao Yang points, like tonifying GB 20 and 34; and BL 19. The former would respond to Blood points like BL 18 or 17, and ST 37; as well as sedation of GV 20.

The treatment for Blood deficiency is Tian Ma Gou Teng Yin. For Shao Yang cases, there may be a few options to work through, depending on what other points moderate the pulse (including KI 3) and whether there are other symptoms, such as intense thirst or diarrhea and constipation. The description of what the pulse feels like beforehand (very flat and superficial vs. soft and weak) can also help us decide which Shao Yang formula to start with.

Knowing the times of day and months that things are better or worse could help differentiate between the two diagnoses as well

If all of the above points help, then we can treat for both conditions simultaneously

Hopefully this gets you going!

Steve

by Dr. Krisi Erwin

January 5, 2020

Thanks so much, Dr. Marsden!!! I see Doug on Friday and will report back after I see him. I truly appreciate your time!!!

Sincerely,
Krisi

by Dr. Krisi Erwin

January 5, 2020

Also, I found a colleague who has been treating another Staffordshire Terrier with clinical signs similar to Doug- I'm just putting this here so I can reference it later and in case it helps others. She has been using Jing Tang herbal formulas: Phlegm Fat Formula and Stasis in Mansion Of Mind with the thought to move the lipofuscin material that is building up in the cerebellar lysosomes. Acupuncture points are those to prevent seizures and keep her brain in connection with the long spinal nerve tracts: GV 20A, GV 16, GV 20, KI 6, Bl 62, Bl 60, ST 36, BL 23, LI 4, Bai Hua, and others depending on weaknesses she sees.

by Dr. Krisi Erwin

January 10, 2020

Ok! Doug update. I'm so incredibly proud of him today- he allowed for a treatment with a few needles for 20 minutes along with some laser AP at more sensitive points. He was on Trazodone today, which made treatment more successful. He is not so much more puny that it made treatment easier, just that the Trazodone made his treatment more easy. Here is my new history information:

Meds are:
Meclizine 25mg PO SID. O did increase it to BID b/c he was wobbly in the morning. That is one change that happened since the seizure.
B Vitamins
Apoquel
Clonidine for his hyperactivity and anxiety
Prozac
CoQ10
Melatonin
Vitamin E
Methocarbamol 750mg 1/2 PO BID- b/c rehab DVM thought hips were tighter than they should have been?
Pepcid 10mg PO BID
Purina calming Carep packets
Rimadyl PRN on days of therapy- hasn’t taken it yet
Heartworm/Flea and Tick

RE: bursts of rage with other dogs- p was super dog friendly when o got him. Did great with them. The dog aggressiveness seemed to happen over night- around the time of his knee surgeries.

The dizziness started end of September/early October- was tipping over more and falling off the couch. His legs are not sturdy normally after surgery. Shaking and dizziness have been the same since then. Sunday pm - last night had a seizure about 15 seconds, tongue was “trilling”, couldn’t move. Arms seemed stuck. Tues pm, woke up at 2am, unable to settle. Up and down. There was snow that night. Very disoriented. O got him inside and tried to calm him. Got him inside and thought p couldn’t see as well. Was fine but very wobbly the next day. Yesterday within his new normal. Today pacing and restless.

Diet is prone to GI issues. Was going to have a scope prior to having these symptoms. RC hydrolyzed protein and RC KO- 1/2 and 1/2 of each. Can tolerate a protein for awhile (never chicken or beef)- cannot digest them at all. Comes up vomited in chunks. O does want to try and home cook for p. Also open to Farmer’s Dog or NomNom now. He can have turkey treats without any troubles. Theory is that he has a slow GI transit time. Did not thrive until RC

O does worry that p will have headaches. Will seem headshy. P does feel warm/hot over masseter muscles not on the top of his head. Ears will be almost straight up and there will be more wrinkles

Knee surgeries in May and August 2017

Exam findings: Re: conventional exam, he was pretty normal outside of flank alopecia bilaterally, base wide stance. TCVM exam:
Pulse more wiry on the right, not as strong as I would have expected overall but weaker on the left than the right. Somewhat deep-had to press harder to feel it than I thought. Normal rate- not very rapid. Maybe could feel the vessel filling under my fingers- I am still working on my. pulse terminology.
Tongue- pink around the edges, more lavender in the middle. Dry with some cracks, broad and flat

I treated as follows:
Dry needles x 20 minutes:
GV 20, 16, 4
BL 17, 18, 20, 21, 23
GB 20
ST 36 (Ah shi)
2 J/cm2 laser AP to the following:
LI 4, LIV 3
SP 6
GB 34, 39

I was not able to do much more than hold him still with the needles so could not try to maneuver the needles for tonifying or sedating. I did check the pulse throughout and it stayed about the same and the tongue looked the same after treatment. I do not know that I could appreciate any active points prior to treatment.

Based on his new history notes, it seems like there may be blood def and spleen deficiency for him. Tracey is super open to anything that may help him. He is starting to see a rehab vet weekly as well to work on proprioception and balance as well.

I hope this helps- your notes from before were super helpful in my history gathering and treatment today. I look forward to your thoughts for moving into the future as well. I will do another acupuncture treatment with Doug in 2 weeks.

I hope you are well and Happy New Year!

Sincerely,
Krisi

by naturevet

January 11, 2020

Hi Krisi,

I see the Blood deficiency in the alopecia along his flanks. The aggression and delicate GI are often associated with a Shao Yang disharmony, as is the weak yet deep and hard to compress pulse. Heat in the Stomach channel often attends Shao Yang disharmony, potentially producing the heat you were feeling in the masseter region. The late evening to early morning aggravation is also commonly associated with Shao Yang disharmony

I would suggest starting with a 2:1 mix of Xiao Chai Hu Tang and Si Wu Tang, combined with 20g of Tian Ma (Gastrodia) per 100g of the base formula. A Time to Heal should have all those

Hopefully you'll see a slackening of symptoms over the next couple of weeks. His GI should also hopefully become more stable and his aggression slowly improve

Based on the outcome I might have some additional suggestions for you. If his aggression improves to the point that you can do one needle at a time, observing the impact on the pulse as you go, then that will help me render more effective advice, if this first suggestion doesn't help

Best of luck! Let us know how it goes!

Steve

by Dr. Krisi Erwin

January 11, 2020

Thanks so very much! I can definitely order the herbs and get them started.

Re: the needling situation. So, I'm not really limited with him by aggression but by movement and excitement. Would it work to try just one needle at a time, remove and try a different one? I didn't think I could keep him still enough to keep the needles in and mess with individual needles and checking the pulse. It may get easier too as we do more treatments as he will have a chance to get used to what I am doing. He's just an excited busy man- the Trazodone just took the edge off enough that he could rest and be still by offering him food. Aggression with him is really only with other dogs, never people.

Thank you, too, for helping to parse through the signs. He is one of the more complicated cases I've seen!!!

Sincerely,
Krisi

by naturevet

January 13, 2020

Hi again!

Yes, I often check one needle at a time, both tonifying then sedating to see which improves the pulse. Then I move on to the next needle. If they don't stay in, that is no problem, since the pulse will stay improved even after the needle falls out. Even acupressure can change the pulse and then there are no needles to have to keep in!

S

by Dr. Krisi Erwin

January 13, 2020

I'm on it. I see him again in 2 weeks and will report back!

Thanks again!

Krisi

by Dr. Krisi Erwin

January 14, 2020

Hi again- so I just spoke with Tracey. She is on board with the herbs and those have been ordered. She said Doug was almost immediately better after acupuncture - back to his 8 month old self re: energy and is much more stable on his feet. She also started decreasing the Methocarbamol after she saw me per my conversation with her so that may have something to do with it as well. However, she feels she saw changes after the acupuncture and before decreasing the Methocarbamol. Fingers crossed- I am hopeful!

by naturevet

January 14, 2020

Excellent! Note that since this diagnosis can only be confirmed at post-mortem, you may have something else going on here. What was the diagnosis based upon?

S

by Dr. Krisi Erwin

January 14, 2020

The neurologist did the genetic test through University of Missouri Vet School and matched it with him based on his breed, positive clinical signs and positive test. I can get the records for you if you would like? I thought I had them- should probably get them regardless so I have a complete chart...

by Dr. Krisi Erwin

January 28, 2020

Hello again!

Here is the next chapter in Doug's case. So, you are correct that there is potentially something else. I got his records from the neurologist and there is concern for cervical myelopathy as well for him. Tracey is reluctant to do MRI unless it will change his overall outcome or treatment protocol.

At his visit, he did seem to be walking better and less unsteady in the rear end. He has had no seizure like episodes in the interval between treatments but he does have time where he seems dizzy. He was much more suspicious of me needling him- I tried to do some manipulation of the needles and he really wouldn't tolerate it. So I went just with straight up needling to get in what I could and lasered the points that I couldn't needle. I used the same points as last time. I felt that his pulse was a bit less wiry seeming though generally soft, deep and deficient feeling. They felt more normal to me after needling. He also really lost his cool when I tried to check his pulse throughout treatment as I put the needles in- not trying to bite or anything but just moving away, not settling, etc. We dispensed the herbs and he will start them later this week when she is back from a business trip. I do have a picture of his tongue and also a video of what his seizure like episodes look like but am not sure if I can attach them for you? I can also provide a copy of the neurology report if that is helpful?

Doug had been to a vet of some sort probably 5-6 times since I had last seen him for rehab, rechecks, etc so I suspect that may contribute to his suspicion? I will keep trying on the tonifying/sedating/pulse checking experiment. I can also have his mom increase the Trazodone dosing prior to his visits if needed to make this more successful.

Thanks again!
Krisi

by Dr. Krisi Erwin

January 28, 2020

I think I figured out how to post the video and tongue picture on the main case section for Doug. Please let me know if it didn't work!!

by Dr. Krisi Erwin

February 17, 2021

Hello! I wanted to offer an update on Doug. He has been getting acupuncture about q 2 weeks and has been on the 2:1 mix of Xiao Chai Hu Tang and Si Wu Tang, combined with 20g of Tian Ma (Gastrodia) per 100g of the base formula. He is stable over the course of the last year and o notices increase in dizziness if acupuncture is delayed. His GI issues returned once when she ran out of herb before getting a refill. I think the neurologist is impressed that he has not progressed at all in a year.

I started seeing another suspected NCL dog (another bully dog diagnosed based on genetic test and CS's). This family is not as compliant for coming in but I have acupunctured him twice in the last 6 weeks and started him on just XCHT tablets as he didn't have to other GI and hair loss signs Doug does. They rechecked with neurology yesterday (he was initially diagnosed in ~6/20) and she couldn't believe how much better he is. He is walking better, less ataxic.

These are 2 interesting cases as they look like twins with how they present neurologically. I know it's not able to be fully diagnosed w/o a brain on necropsy (Minnesota State actually reached out to Doug's family to see if they would send him to them after he's euthanized so we will eventually fill out the diagnosis but hopefully not for a long time!) but these dogs are essentially not offered anything with conventional medicine. Pretty awesome that the herbs and acupuncture are helping to keep them stable!!! Thanks again for all of your help!

by naturevet

February 18, 2021

Krisi, thanks so much for keeping us posted through the last year on these dogs. It's such a rare diagnosis, so your approaches and success will be something that everyone tries to emulate.

How amazing to have those improvements and lack of disease progression - so much so that the neurologists sit up an take notice. You're really an ambassador for your profession now and doing such a great job! Congratulations and thanks again from all of us!

Steve

by Dr. Krisi Erwin

February 26, 2021

Oh, Dr. Marsden- thank YOU for all of your help so far. I'll try to check back in periodically with updates (and certainly with questions as they crop up). Bizarre disease and I guess presentation is very breed specific. Hopefully I can help keep these 2 running for as long as possible and we can all collectively help others that show up! Thanks again for setting up this platform where we can get some additional perspective and help in these cases!!

Sincerely,
Krisi

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