Update: Poor Biscuit is back in ER

[Ladysmom]

What a sweet boy! I am so glad he is home and in your arms.

[DeniseA.]

keeping you all in my prayers! The little man is truly blessed to have such awesome parents!

[TLR]

Welcome home Biscuit. Seeing him in your wife's arm is very comforting. Prayers continued for Biscuit.

[Zoe's Mom88]

So very happy to see Biscuit at home with his Mommy and Daddy. I am sure he feels best their too. Hoping your trip to Boston will bring about a final solution for this sweet baby once and for all. Hugs to all of you.

[Lynzodolly]

Prayers still sending xx

[vinhle68]

[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.

[edelweiss]

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.

[Grace'sMom]

I'm glad Biscuit is home..... I keep praying for him.

You are blessed to have him He is also so blessed to have you.

I wish you all a wonderful Christmas together

[wkomorow]

So glad the little one is home - all three of you have had a rough time.

[pammy4501]

Originally Posted by vinhle68

[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.