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Update: Poor Biscuit is back in ER

12K views 167 replies 55 participants last post by  pammy4501 
#1 · (Edited)
Hello SM Family,

We are sad to report that poor little Biscuit is back in ER again and is in critical condition and under close observation. He started to experience very light and minor seizure activities yesterday and we rush him into the ER right away. His condition throughout last night was supposedly minor with several repeat of light twitching of his head, overly salivating at the mouth, and occasionally runs around in a clockwise pattern.

However, the light seizure continue throughout today and at around 6PM PST when we were on our way to visit him, things turn for the worst where the seizure started to worsen and more constant where the emergency staff had to make a quick decision to fully sedated him so the activities would stop. The sad and heartbreaking part is when Ann and I came in to visit him, while we thought he was completely out due to the medication, he actually try to wake up because we thinks he senses us there mostly for his momma, and it was hard to see how he was twitching uncontrollably. His mouth was clapping as well. Ann broke down in tears and all I can do is consulted her.

At this point we are told to wait it out and hopefully the heavy medication will stop the seizure and allow Biscuit to rest. It's going to be a long and tough night for the both of us not knowing what will be the outcome. There is hope that tomorrow he would be stabilize enough for us to transfers him down to the ER facilities more closer to home and that we will be resuming the treatment with the original neurologist.
I'm sorry for the long email but I felt as I need to share this with someone. Please join us in prayers for our boy to tough it out through this.

Blessing...:prayer:
 

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#156 · (Edited)
Bisucit discharge summary from Dr. Windsor

[Information Purposes]
SM Family, this is a full summary of our recent visit with Dr. Windsor.

Biscuit was presented for seizures. Based on his breed and MRI findings, we are most suspicious that he has auto-immune inflammatory disease in addition to the hydrocephalus and Chiari-like malformation. Although the hydrocephalus is severe, congenital malformations are typically more static, whereas auto-immune disease progresses if not treated aggressively. There are two main forms of auto-immune brain disease – granulomatous meningeoencephalitis and necrotizing encephalitis. Necrotizing encephalitis tends to effect the front part of the brain (the cerebrum) and cause seizures, blindness, and circling, whereas GME tends to affect the back of the brain and the spinal cord in the neck and cause balance issues and pain. Based on the MRI and Biscuit’s symptoms, it is possible that he has necrotizing encephalitis, which can unfortunately carry a poorer prognosis. In addition to doing an MRI, we often collect spinal fluid to look for inflammation consistent with auto-immune disease. Dr. Vitale opted not to collect spinal fluid in November because a spinal tap would have been risky with the malformation at the back of his skull. He was started on prednisone at the time for inflammation. Because he was started on prednisone already, collecting spinal fluid now may be inconclusive because prednisone can alter the results.

Even with spinal fluid, it is difficult to tell which differentiate the type of auto-immune disease without a biopsy, and the treatment is the same. Treatment involves suppressing the immune system with prednisone and other medications (most commonly Cytosar, and injectable chemotherapy medication used at a lower dose than used for cancer). We gave Biscuit high doses of steroids, Cytosar, and seizure medications while in hospital and were able to get the seizures under control. The anti-seizure medications often cause severe sedation, and he will likely be very sedate and uncoordinated over the next couple of weeks as the medications clear his system. He is currently on Phenobarbital and Keppra for seizures, but we may be able to taper and discontinue the phenobarbital if he has no further seizure activity. We opted to keep him on phenobarbital for now because it is a stronger anti-seizure medication than Keppra.

Biscuit is currently still blind which could be residual from the seizure activity or from inflammation in the part of his brain which processes vision. He is unable to walk yet and still tends to circle to the right. Circling is also a common symptom of a problem in the front of his brain. We need to give him more time to see if these symptoms will resolve.

AT HOME INSTRUCTIONS:
Activity restriction: Please keep his activity restricted over the next 2-4 weeks as he recovers. He should be confined to a well-padded crate or small confined area when he is not closely supervised. He should be carried outside 3-4 times daily to go to the bathroom. Do not allow him to move around excessively or roam around the house unattended. When you are home, it is okay for him to be out of the crate if you are holding him or doing his physical therapy exercises. Absolutely NO running, jumping, climbing stairs, or playing with other dogs for next 4 weeks.

Urination: Biscuit has been urinating on his own. If he has not urinated in over 24 hours, please call us. Please monitor his urine for blood or odor, as these could indicate a urinary tract infection.

DIET: Biscuit will be less coordinated when eating over the next few weeks. Please offer him small amounts of canned food by hand several times daily.
WATER: Because Biscuit doesn’t have normal vision, you will need to bring the water to him to drink.

REHABILITATION: Please follow the rehabilitation instructions provided. We may recommend long-term physical therapy depending on his recovery over the next couple weeks. ***Physical rehabilitation sessions should be conducted 3 times a day. Massage: Each session should begin with gentle massage of the limbs. Massage from the toes up to the hips.

Patterning: Next, patterning of the legs may begin. Each leg should be moved through a normal walking pattern, upwards to “break” the rigidity. (ie. Curl the toes first, then flex the ankle, knee, and hip sequentially). Each leg should be gently patterned for 20 repetitions. The patterning exercises should be follow by standing exercises.

Standing: Place him in a regular standing position with light support for balance. Allow him to sink to the ground, and then repeat 20 times.
Medications: Phenobarbital 16.2mg (1/4gr) Tab qty. 30. Rx: Give ½ tablet twice daily. *It is important to give this medication approximately every 12 hours and not miss a dose. Missing a dose can cause breakthrough seizures.

WARNING: Stopping this medication abruptly can cause severe seizure activity. *Common side effects of this medication include increased appetite, drinking, and urination. These effects typically persist while taking Phenobarbital and often cause weight gain. *Side effects that are common in the first 1-2 weeks include sedation, sleepiness, and difficulty walking in the hind limbs. These signs should become minimal or go away after 7-14 days. * Rare but severe side effects of Phenorbarbital include liver and bone marrow damage. Liver and bone marrow function can be monitored with routine bloodwork, and any damage is typically reversible when Phenobarbital is discontinued. *Phenobarbital causes some other changes on bloodwork that are not typically problematic. **Phenobarbital causes elevations in liver enzymes (i.e. ALT, ALP) on bloodwork, which is NOT the same as liver damage. Please consult with us before making any changes based on blood work abnormalities. **Dogs on Phenobarbital also have a falsely low thyroid level. Low thyroid level in a dog on Phenobarbital does not mean the dog has hypothryroidism (a common metabolic disease in dogs). * BLOODWORK RECOMMENDATOINS: We recommend rechecking a complete blood count (CBC), biochemistry panel, and Phenobarbital level 2 weeks after starting Phenobarbital. Follow-up rechecks (CBC and biochemistry panel only) are recommended every 6-12 months after that.

Keppra (100 mg/mL solution): Give ½ mL by mouth three times daily. Prednisone 5mg qty. 30 Rx: Give ½ tablet twice daily. Phenobarbital 16.2mg (1/4gr) Tab qty. 30. Rx: Give ½ tablet twice daily.
 
#160 ·
[Information Purposes]
SM Family, this is a full summary of our recent visit with Dr. Windsor.

Biscuit was presented for seizures. Based on his breed and MRI findings, we are most suspicious that he has auto-immune inflammatory disease in addition to the hydrocephalus and Chiari-like malformation. Although the hydrocephalus is severe, congenital malformations are typically more static, whereas auto-immune disease progresses if not treated aggressively. There are two main forms of auto-immune brain disease – granulomatous meningeoencephalitis and necrotizing encephalitis. Necrotizing encephalitis tends to effect the front part of the brain (the cerebrum) and cause seizures, blindness, and circling, whereas GME tends to affect the back of the brain and the spinal cord in the neck and cause balance issues and pain. Based on the MRI and Biscuit’s symptoms, it is possible that he has necrotizing encephalitis, which can unfortunately carry a poorer prognosis. In addition to doing an MRI, we often collect spinal fluid to look for inflammation consistent with auto-immune disease. Dr. Vitale opted not to collect spinal fluid in November because a spinal tap would have been risky with the malformation at the back of his skull. He was started on prednisone at the time for inflammation. Because he was started on prednisone already, collecting spinal fluid now may be inconclusive because prednisone can alter the results.

Even with spinal fluid, it is difficult to tell which differentiate the type of auto-immune disease without a biopsy, and the treatment is the same. Treatment involves suppressing the immune system with prednisone and other medications (most commonly Cytosar, and injectable chemotherapy medication used at a lower dose than used for cancer). We gave Biscuit high doses of steroids, Cytosar, and seizure medications while in hospital and were able to get the seizures under control. The anti-seizure medications often cause severe sedation, and he will likely be very sedate and uncoordinated over the next couple of weeks as the medications clear his system. He is currently on Phenobarbital and Keppra for seizures, but we may be able to taper and discontinue the phenobarbital if he has no further seizure activity. We opted to keep him on phenobarbital for now because it is a stronger anti-seizure medication than Keppra.

Biscuit is currently still blind which could be residual from the seizure activity or from inflammation in the part of his brain which processes vision. He is unable to walk yet and still tends to circle to the right. Circling is also a common symptom of a problem in the front of his brain. We need to give him more time to see if these symptoms will resolve.

AT HOME INSTRUCTIONS:
Activity restriction: Please keep his activity restricted over the next 2-4 weeks as he recovers. He should be confined to a well-padded crate or small confined area when he is not closely supervised. He should be carried outside 3-4 times daily to go to the bathroom. Do not allow him to move around excessively or roam around the house unattended. When you are home, it is okay for him to be out of the crate if you are holding him or doing his physical therapy exercises. Absolutely NO running, jumping, climbing stairs, or playing with other dogs for next 4 weeks.

Urination: Biscuit has been urinating on his own. If he has not urinated in over 24 hours, please call us. Please monitor his urine for blood or odor, as these could indicate a urinary tract infection.

DIET: Biscuit will be less coordinated when eating over the next few weeks. Please offer him small amounts of canned food by hand several times daily.
WATER: Because Biscuit doesn’t have normal vision, you will need to bring the water to him to drink.

REHABILITATION: Please follow the rehabilitation instructions provided. We may recommend long-term physical therapy depending on his recovery over the next couple weeks. ***Physical rehabilitation sessions should be conducted 3 times a day. Massage: Each session should begin with gentle massage of the limbs. Massage from the toes up to the hips.

Patterning: Next, patterning of the legs may begin. Each leg should be moved through a normal walking pattern, upwards to “break” the rigidity. (ie. Curl the toes first, then flex the ankle, knee, and hip sequentially). Each leg should be gently patterned for 20 repetitions. The patterning exercises should be follow by standing exercises.

Standing: Place him in a regular standing position with light support for balance. Allow him to sink to the ground, and then repeat 20 times.
Medications: Phenobarbital 16.2mg (1/4gr) Tab qty. 30. Rx: Give ½ tablet twice daily. *It is important to give this medication approximately every 12 hours and not miss a dose. Missing a dose can cause breakthrough seizures.

WARNING: Stopping this medication abruptly can cause severe seizure activity. *Common side effects of this medication include increased appetite, drinking, and urination. These effects typically persist while taking Phenobarbital and often cause weight gain. *Side effects that are common in the first 1-2 weeks include sedation, sleepiness, and difficulty walking in the hind limbs. These signs should become minimal or go away after 7-14 days. * Rare but severe side effects of Phenorbarbital include liver and bone marrow damage. Liver and bone marrow function can be monitored with routine bloodwork, and any damage is typically reversible when Phenobarbital is discontinued. *Phenobarbital causes some other changes on bloodwork that are not typically problematic. **Phenobarbital causes elevations in liver enzymes (i.e. ALT, ALP) on bloodwork, which is NOT the same as liver damage. Please consult with us before making any changes based on blood work abnormalities. **Dogs on Phenobarbital also have a falsely low thyroid level. Low thyroid level in a dog on Phenobarbital does not mean the dog has hypothryroidism (a common metabolic disease in dogs). * BLOODWORK RECOMMENDATOINS: We recommend rechecking a complete blood count (CBC), biochemistry panel, and Phenobarbital level 2 weeks after starting Phenobarbital. Follow-up rechecks (CBC and biochemistry panel only) are recommended every 6-12 months after that.

Keppra (100 mg/mL solution): Give ½ mL by mouth three times daily. Prednisone 5mg qty. 30 Rx: Give ½ tablet twice daily. Phenobarbital 16.2mg (1/4gr) Tab qty. 30. Rx: Give ½ tablet twice daily.
This is all very very familiar to me. My dog Lola ended up having NME which was confirned on necropsy. We used Potassium Bromide (KBro) for seizures. Please watch the liver enzymes with the pred and phenobarb. It can shoot them up and off the charts. My only observation of this regieme is that the pred dose seems on the low side to me. And I am not seeing the continuation of the Lufonimide or Cytosar. It is the only thing that will keep his immune system in check. The goal witht he pred is to get the inflamation under control and then to wean off of it all together. Are you still planning on seeing Dr. Sisson? He will bump that pred dramatically. You are on the right track. Keep up the good work.
 
#157 ·
Thank you Vinh for posting this! It is very sobering to say the least! We are all interested & learning through your process w/Biscuit---it is the least we can do to follow him in his difficult journey! My heart goes out to each of you as you suffer w/him every single moment.
SM has seen this before, but we never can know enough. I thank you for your willingness to share w/us your particular situation. All of us know that at any given time we may be in your shoes and it benefits us greatly to share w/you and learn from your experience. Biscuit is a brave little soldier, and we stand amazed at his desire to continue to survive. May God grant you Vinh, and Ann unsurpassed strength as you continue your fight for his life. Blessings, love & mercy to you.
 
#163 ·
Vinh and I have been communicating in private since this thread first showed up.

I have been giving him all the information of my experience at the visit in the Animal Hospital in Boston with Dr. Sisson so that they are well equipped and know what to expect.

I am very glad that they decided to go to Boston and be seen by the best: Dr. Sisson.
 
#164 ·
Thank you!

Vinh and I have been communicating in private since this thread first showed up.

I have been giving him all the information of my experience at the visit in the Animal Hospital in Boston with Dr. Sisson so that they are well equipped and know what to expect.

I am very glad that they decided to go to Boston and be seen by the best: Dr. Sisson.

Picoolina have been a huge blessing just like everyone here who have shared concerns and optimistic to help get Biscuit better! Ann and I are both lucky to have found SM otherwise we would probably still be lost right now. :ThankYou:
 
#167 ·
Sharing some delima

Happy Sunday Everyone,

We need some advice on an important issue. We have been getting a lot of tips and suggestions on increasing Biscuit’s Prednisone (steroid) doses to a higher dose to help fight the potential inflammatory progression in his brain.

In fact in Dr. Sisson published medical newsletter, he has specifically noted that his method for treating this would be a more aggressive dose of steroids to combat the inflammation.

We also know that generally traditional Veterinarian tends to take the more conservative approach by prescribing lower dose of steroid, which seem to indicate marginal benefit and possibly the lower doses only true effectiveness is to contain the seizure. Of course Ann and I am no expert when it comes to this matter and we’re definitely not doctors. Having said that what we do know is right before for Biscuit 2nd relapse of more severe seizures, the Prednisone doses were decreased.

Also we spoke with another Maltese owner in the GME forum who had a dog that went through almost the same symptoms and illness Biscuit is facing and she spoke to Ann for a long conversation today sharing historical information and such. She said that at her dog was 3.5yrs but was close to the same weight as Biscuit and at the time of treatment, Dr. Sisson prescribe at least 20mg per day (10mg twice a day).

Biscuit is currently only on a 5mg per day (2.5mg twice per day). We are seriously debating if we should just make the call and increase his Prednisone (steroid) to 10mg per day (5mg twice per day) but we're afraid if we do it without a direction from Dr. Sisson or Vet, we could be causing more harm than good.

On one side we are seriously worries that the longer Biscuit goes on with the wrong amount of medication he could be heading for more severe brain damage. Even Dr. Sisson has pointed this out.

However, without an official consent from a Vet or Dr. Sisson to increase the dosage, we fear that making the call ourselves could even worsen Biscuit already unstable and critical condition! Gosh...this is stressing both Ann and I out and we can’t wait to be able to see Dr. Sisson.

To make it worse Dr. Sisson earliest available appointment is this Wednesday in which we will be contacting his secretary first thing tomorrow to secure the appointment. The harder part is finding flights FROM/TO Boston and back home. Ann has been searching and she said getting to Boston might be possible, but getting home would be tough. Gosh...things never seem to fall your way when you need them most!

One good thing out of all this is that our new lady friend from the GME forum has provided us with the contact to her Vet, the one that has worked with Dr. Sisson in the past, and we have booked an appointment for a consultation with her tomorrow.

A little update on Biscuit. He's still tend to tilting his head to the right and circle tightly to the right as well clockwise. However when he roam around the house he can actually walk unsteadily and wobily but pretty straight at time at very slow motion. We also started to pay more attention when he is in a deep sleep. His breathing tends to shorten but at a more rapid rates, which usually end up with him waking up sharply and extending his tonge and pants heavily. When this usually happen either he has to poops, or thristy, or simply just panting which is an expected side effect from the meds. Every now and then he'll wake up and start opening and close his mouth like he has something stuck in it that is bothering him, but we can't tell if this is actually a lite or mild seizure happening. But we noted the incident down with date/time so we can provide the info to the Vet and Dr. Sisson.

We have created a confined comfortable spot next to where Ann sleeps on the floor with him but he hates being inside. The only thing he does inside the confined space is pees! lol some time poops. I got some pics so show how he tried to climb out of his confined space today. :HistericalSmiley:

Dog Canidae Dog breed Maltese Schnoodle


Dog Mammal Vertebrate Dog breed Canidae


Dog Canidae Dog breed Maltese Puppy


Dog Mammal Vertebrate Dog breed Canidae


Dog Mammal Vertebrate Dog breed Canidae
 

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#168 ·
I would not alter the meds without consulting the vets. There needs to be close attention paid to lab values (as I was mentioning earlier). How soon are you planning on seeing Dr. Sisson? Are you aware that he takes long distance consultations? Perhaps you and your current vet could arrainge this? There isn't one clear answer on this disease. Dr. Sisson is one approach. There are others. I saw Stacy Sullivan at Animal Specialty Group in Los Angeles. She was wonderful, and very well versed in Dr. Sissons work. She is alot closer and very good for us. She did right by my dog. Here is her contact info:

Stacey Sullivan, DVM :: Veterinary Neurology + Neurosurgery

And here is a short article she wrote about GME.

Immune-Mediated Encephalitis :: The Case of the Loopy Shepherd
 
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