[Fahreen]

I’m so sorry to read this. I hope you can find a really good neurologist. You can never have enough info when it comes to treatments. If whatever information your Vet gives you doesn’t seem right, move on. We are our fluffs only advocate, so fight hard to keep her well.
Here is an article from Dr. Alan Sisson from Angell hospital. He has since retired but people from all over the world flew to see him for their dogs GME. Sending positive prayers to Bella 🙏🏻

Dr Sisson's paper

A Yorkie's journey with Granulomatous Meningoencephalitis GME

georgieyorkie.blogspot.com

Thank you so much for your kindness, prayers and for sharing the article. Very insightful. Bella is responding very well neurologically to an aggressive Prednisone protocol right now (although her tummy is suffering so much!). We have a follow up with her neurologist in a couple of weeks. We’re staying positive and determined to do whatever it takes to give her a good quality of life 🙏

 

[Lilysdream]

Hello Fahreen,

I am very happy that Bella is responding well.
Sending prayers to you 🧡

 

[hayley's mom]

I apologize in advance for this lengthy discussion fellow fur-parents. I wanted to update you all on Bella's status. It has been a rough tough week so far. Bella has been worsening in terms of the weakness on her right side. Yesterday, she woke up with her right hind leg pretty much paralyzed. Our vet got us into a specialty care ER right away. They admitted Bella and started all sorts of testing and bloodwork - all her bloodwork was wnl! Then came the neurology work-up. One of our best neurologists in the Pacific NW happened to be on rounds and saw her with a full exam - they followed up with an MRI and these are the findings. First issue is they discovered she has COMS or Chiari Malformation. I had never heard of this condition and apparently it is common in small breeds and esp the ones that are "made/bred cute" with smaller rounder heads. It is when their skulls are actually too small for their brain size and that leads to impingement into the brain stem and narrowing of the spinal cord (I hope I understand this all correctly?). Dr. Spoor said that there is significant narrowing of her spinal cord which is leading to spinal fluid build-up. Secondly, she is also showing in the MRI signs of GME - granulomatous meningoencephalomyelitis - which is a non-infectious meningitis in the brain. This is an autoimmune disorder that is quite common in small, white, female dogs. Wow! We are in shock! Utter utter shock! All this, out of the blue?!?! They have kept her in the hospital and started steroid therapy last night; I hope we can bring her home today. All I have been doing is crying and praying. We love her so much. We just want her to have a good recovery and healthy quality of life. She is barely 2! I need to have another conversation with the neurologist about the long term prognosis but I think he said that it can be good as long as its well managed with meds. If anyone has ANY thoughts on all of this, pls share! I am also wondering how I can bring this up with Bella's breeder ... should I? Bella has 2 brothers in her litter; I am curious if they are both healthy? Bella has had health issues almost all her life Of course, we are going to do everything to help her because she is our baby and I truly believe that her soul chose our family to be a part of. I am feeling a bit bitter about her health issues though .... pls don't judge me! Thank you for letting me pour my heart out; I am grateful for this community.

I apologize in advance for this lengthy discussion fellow fur-parents. I wanted to update you all on Bella's status. It has been a rough tough week so far. Bella has been worsening in terms of the weakness on her right side. Yesterday, she woke up with her right hind leg pretty much paralyzed. Our vet got us into a specialty care ER right away. They admitted Bella and started all sorts of testing and bloodwork - all her bloodwork was wnl! Then came the neurology work-up. One of our best neurologists in the Pacific NW happened to be on rounds and saw her with a full exam - they followed up with an MRI and these are the findings. First issue is they discovered she has COMS or Chiari Malformation. I had never heard of this condition and apparently it is common in small breeds and esp the ones that are "made/bred cute" with smaller rounder heads. It is when their skulls are actually too small for their brain size and that leads to impingement into the brain stem and narrowing of the spinal cord (I hope I understand this all correctly?). Dr. Spoor said that there is significant narrowing of her spinal cord which is leading to spinal fluid build-up. Secondly, she is also showing in the MRI signs of GME - granulomatous meningoencephalomyelitis - which is a non-infectious meningitis in the brain. This is an autoimmune disorder that is quite common in small, white, female dogs. Wow! We are in shock! Utter utter shock! All this, out of the blue?!?! They have kept her in the hospital and started steroid therapy last night; I hope we can bring her home today. All I have been doing is crying and praying. We love her so much. We just want her to have a good recovery and healthy quality of life. She is barely 2! I need to have another conversation with the neurologist about the long term prognosis but I think he said that it can be good as long as its well managed with meds. If anyone has ANY thoughts on all of this, pls share! I am also wondering how I can bring this up with Bella's breeder ... should I? Bella has 2 brothers in her litter; I am curious if they are both healthy? Bella has had health issues almost all her life Of course, we are going to do everything to help her because she is our baby and I truly believe that her soul chose our family to be a part of. I am feeling a bit bitter about her health issues though .... pls don't judge me! Thank you for letting me pour my heart out; I am grateful for this community.

I am so very sorry to hear of your baby’s diagnosis- our female Maltese was diagnosed with gme at 18 months and I know how totally stunned and devastated we were and we felt just as you did - that she came to live with Us for a reason - we had the means to treat her as it is very costly with no pet insurance and secondly we would have done anything to keep her healthy and we did - I hope they will discuss other Meds with you such as Cytosar which is chemo
And another immunosuppressant such as mycophenelate- which saved our dog’s life - prednisone is necessary and must be given immediately and in a large dose to get the inflammation under control- but it shouldn’t be the only Med that is used - with gme you have to owe every tool in the toolbox
Regarding whether to tell your breeder. _ absolutely you should - the breeder needs to know not to breed Bella’s parents ever again and while the brothers may not have it they may be carriers
I am so so sorry for you and Bella but with the right care and treatment there is much they can do
I’m praying for you all
Xoxoxo

 

[Bella Maltese]

I am so very sorry to hear of your baby’s diagnosis- our female Maltese was diagnosed with gme at 18 months and I know how totally stunned and devastated we were and we felt just as you did - that she came to live with Us for a reason - we had the means to treat her as it is very costly with no pet insurance and secondly we would have done anything to keep her healthy and we did - I hope they will discuss other Meds with you such as Cytosar which is chemo
And another immunosuppressant such as mycophenelate- which saved our dog’s life - prednisone is necessary and must be given immediately and in a large dose to get the inflammation under control- but it shouldn’t be the only Med that is used - with gme you have to owe every tool in the toolbox
Regarding whether to tell your breeder. _ absolutely you should - the breeder needs to know not to breed Bella’s parents ever again and while the brothers may not have it they may be carriers
I am so so sorry for you and Bella but with the right care and treatment there is much they can do
I’m praying for you all
Xoxoxo

I too have a Bella who was diagnosed last February with GME. She is 10 years old. I noticed her legs slipping and her walking up against things because of her difficulty walking. We were referred to a neurologist who diagnosed her. She is on prednisone and she gets 2 injections of chemo called cyterabean. ( I hope I spelt that right) monthly. She responded very well and they started to decrease her prednisone and spread out her chemo to 6 weeks a part. Unfortunately she relapsed. We have to keep her on Chemo every 4 weeks and prednisone for the rest of her life. We too love our precious Bella and will do whatever it takes to give her the best quality of life. She is our baby too.
One thing I am doing to help keep her liver enzymes down is giving her SameLQ 225 and it has really helped. You can get this from Chewy.com.
We also have another Maltese named Baylee who has PLE Protein Loosing Enteritis. She is now on chemo too. We are having a difficult time getting her blood albumin up past 1.8. She sees an internist and is on dexamethosone injections daily. We are so fortunate to have health insurance on these fur babies.
If they have not tried the chemo for your Bella you may want to mention it. It really is helping my Bella. My thoughts and prayers are with your precious Bella

 

[Fahreen]

I too have a Bella who was diagnosed last February with GME. She is 10 years old. I noticed her legs slipping and her walking up against things because of her difficulty walking. We were referred to a neurologist who diagnosed her. She is on prednisone and she gets 2 injections of chemo called cyterabean. ( I hope I spelt that right) monthly. She responded very well and they started to decrease her prednisone and spread out her chemo to 6 weeks a part. Unfortunately she relapsed. We have to keep her on Chemo every 4 weeks and prednisone for the rest of her life. We too love our precious Bella and will do whatever it takes to give her the best quality of life. She is our baby too.
One thing I am doing to help keep her liver enzymes down is giving her SameLQ 225 and it has really helped. You can get this from Chewy.com.
We also have another Maltese named Baylee who has PLE Protein Loosing Enteritis. She is now on chemo too. We are having a difficult time getting her blood albumin up past 1.8. She sees an internist and is on dexamethosone injections daily. We are so fortunate to have health insurance on these fur babies.
If they have not tried the chemo for your Bella you may want to mention it. It really is helping my Bella. My thoughts and prayers are with your precious Bella

Thank you to all of you who have responded to my queries and sent prayers and messages ... this is truly a wonderful place to belong and I am grateful to have found this forum. Well, we have had a couple of weeks now and I have updates! Our Bella had an extensive neuro re-eval and follow-up earlier this week. She is doing wonderfully so far and the neurologist has upped her Prednisone dose to the max (for her weight) in the hopes of completely suppressing her immune system and killing the active flare-up of GME completely. BTW, Bella has the MUE form of GME - Meningoencephalomyelitis of Unknown Origin (meaning, non-infectious and auto-immune related). Bella is tolerating the upped Prednisone dose just fine; she is drinking a ton of water and is very hungry all the time (hard for us to see her this way but we can't keep feeding her!). No other side effects so far - fingers tightly crossed! She will be on this dose for 3-weeks and then starts the Cytosar (Cytarabine) chemo infusion every 4-weeks. At this time, he will start the taper off the Prednisone. The Dr. says he thinks she should get at least 5 consistent months of the infusion before he will try to extend the time between infusions. The rest remains to be seen. ABSOLUTELY NO MORE IMMUNIZATIONS per the neuro - it is the one thing that has been proven over and over again to flare up GME episodes! We are staying hopeful and optimistic. Unfortunately, her Chiari-like malformation is the other major issue she is dealing with. That will need some management in the future also, but for now, we need to get the GME in remission. The chemo infusions run around $1200/month (!!!). I am really hoping that our medical insurance will help pay for it. I wonder if there is anyone here who has dealt with a Maltese with Chiari? Apparently, it is most common in Cavalier King Charles.

I am asking for any thoughts or tips on how to deal with a super immunosuppressed doggie .... any input is appreciated! I am being told to be careful of how she is exposed. No more dog parks for us! We have already made arrangements with our groomer who will come home and help us out. I am getting a doggie stroller so she can still go out and walk with us and we can pop her in when she is too tired to walk herself. And the Dr suggested we turn to cooked food now; Bella currently eats raw beef & lamb interchangeably from Small Batch. We have started giving her some fresh, steamed veggies for snacks (she is just so hungry all the time!), she loves blueberries, and sweet potato. I am changing her treats from raw to jerky style ones. I would really appreciate any help with cooking her food. I am happy to buy quality lamb and beef and cook it but am not sure how to make her food complete with all the nutrients she needs? Add a meal mixer? I heard that Fish Oils are good for the central nervous system so I will look into that supplement too. I know that her liver enzymes will be monitored so we may need to add the SameLQ (thank you Bella Maltese's mom!).

Thank you again for all your support!
Fahreen Xox

 

[mss]

I am glad the prednisone is helping!

I did a search on this site for "Chiari" and "syringomyelia" -- I found there was one person who posted once, another who posted about her dog Kodie who had something similar, but that was a long time ago. I hope you find other advice here -- or elsewhere!

It sounds like you are very dedicated in the care of your Bella! ❤

 

[Bella Maltese]

Thank you to all of you who have responded to my queries and sent prayers and messages ... this is truly a wonderful place to belong and I am grateful to have found this forum. Well, we have had a couple of weeks now and I have updates! Our Bella had an extensive neuro re-eval and follow-up earlier this week. She is doing wonderfully so far and the neurologist has upped her Prednisone dose to the max (for her weight) in the hopes of completely suppressing her immune system and killing the active flare-up of GME completely. BTW, Bella has the MUE form of GME - Meningoencephalomyelitis of Unknown Origin (meaning, non-infectious and auto-immune related). Bella is tolerating the upped Prednisone dose just fine; she is drinking a ton of water and is very hungry all the time (hard for us to see her this way but we can't keep feeding her!). No other side effects so far - fingers tightly crossed! She will be on this dose for 3-weeks and then starts the Cytosar (Cytarabine) chemo infusion every 4-weeks. At this time, he will start the taper off the Prednisone. The Dr. says he thinks she should get at least 5 consistent months of the infusion before he will try to extend the time between infusions. The rest remains to be seen. ABSOLUTELY NO MORE IMMUNIZATIONS per the neuro - it is the one thing that has been proven over and over again to flare up GME episodes! We are staying hopeful and optimistic. Unfortunately, her Chiari-like malformation is the other major issue she is dealing with. That will need some management in the future also, but for now, we need to get the GME in remission. The chemo infusions run around $1200/month (!!!). I am really hoping that our medical insurance will help pay for it. I wonder if there is anyone here who has dealt with a Maltese with Chiari? Apparently, it is most common in Cavalier King Charles.

I am asking for any thoughts or tips on how to deal with a super immunosuppressed doggie .... any input is appreciated! I am being told to be careful of how she is exposed. No more dog parks for us! We have already made arrangements with our groomer who will come home and help us out. I am getting a doggie stroller so she can still go out and walk with us and we can pop her in when she is too tired to walk herself. And the Dr suggested we turn to cooked food now; Bella currently eats raw beef & lamb interchangeably from Small Batch. We have started giving her some fresh, steamed veggies for snacks (she is just so hungry all the time!), she loves blueberries, and sweet potato. I am changing her treats from raw to jerky style ones. I would really appreciate any help with cooking her food. I am happy to buy quality lamb and beef and cook it but am not sure how to make her food complete with all the nutrients she needs? Add a meal mixer? I heard that Fish Oils are good for the central nervous system so I will look into that supplement too. I know that her liver enzymes will be monitored so we may need to add the SameLQ (thank you Bella Maltese's mom!).

Thank you again for all your support!
Fahreen Xox

I am so glad you are able to get your Bella the treatment that we are doing for our Bella. My Bella is doing great right now and I swear by the Same LQ supplement to help her liver enzymes. I would be interested what you are using to feed your Bella. I had to put my Bella on a special diet because she developed bladder stones on top of everything else. The new dog food actually worked to dissolve the badder stones so I have to keep her on it for now. The prednisone does make them very hungry and urinate a lot more. I give ours green beans as a snack. Are blueberries ok to give them. If so I will get her some. She would love it. I would be curious to know what the meal mixer is too. Continual prayers for your Bella.
Bella Maltese mom ( Lisa)

 

[Fahreen]

I am glad the prednisone is helping!

I did a search on this site for "Chiari" and "syringomyelia" -- I found there was one person who posted once, another who posted about her dog Kodie who had something similar, but that was a long time ago. I hope you find other advice here -- or elsewhere!

It sounds like you are very dedicated in the care of your Bella! ❤

Thank you!

 

[Fahreen]

I am so glad you are able to get your Bella the treatment that we are doing for our Bella. My Bella is doing great right now and I swear by the Same LQ supplement to help her liver enzymes. I would be interested what you are using to feed your Bella. I had to put my Bella on a special diet because she developed bladder stones on top of everything else. The new dog food actually worked to dissolve the badder stones so I have to keep her on it for now. The prednisone does make them very hungry and urinate a lot more. I give ours green beans as a snack. Are blueberries ok to give them. If so I will get her some. She would love it. I would be curious to know what the meal mixer is too. Continual prayers for your Bella.
Bella Maltese mom ( Lisa)

Thank you Lisa! I appreciate your support …
Blueberries are great for them! Try it. Our Bella loves lil chunks of strawberries too, although she’ll gobble up as many blueberries as we give her! I am happy to keep posting here as we tweak Bella’s diet. Or we can chat via private messaging too - if it becomes too much for everyone else - lol. I’ve been praying for both our Bellas … I’m glad your baby is stable.

 

[mss]

Your posts here can be a great resource for others in the future, too.

 

[maddysmom]

I would really appreciate any help with cooking her food. I am happy to buy quality lamb and beef and cook it but am not sure how to make her food complete with all the nutrients she needs? Add a meal mixer

Honest kitchen makes a base mix where you add the protein and it completes the meal. You wouldnt have to worry about supplementing etc. i added a link to their site.

Dehydrated Dog Food

Easy-to-Digest Dehydrated Whole Foods

www.thehonestkitchen.com

 

[Fahreen]

Honest kitchen makes a base mix where you add the protein and it completes the meal. You wouldnt have to worry about supplementing etc. i added a link to their site.

Dehydrated Dog Food

Easy-to-Digest Dehydrated Whole Foods

www.thehonestkitchen.com

Thank you for the link. I just heard about Dr. Harvey’s meal mixer too. I haven’t gotten around to researching my options yet. I will keep posting as we get more info … on food, on the Chiari condition as well as the treatments.

 

[maddysmom]

Thank you for the link. I just heard about Dr. Harvey’s meal mixer too. I haven’t gotten around to researching my options yet. I will keep posting as we get more info … on food, on the Chiari condition as well as the treatments.

Yes, Dr. Harveys is another good one. My girls prefer more substance, so they wouldnt eat Dr. Harvey's. I know alot of people on my IBD group who feed it and the dogs love it. It will make it so much easier for you and one less thing to worry about.

 

[Fahreen]

UPDATE - hello all! I have been meaning to post an update on our Bella and the management with GME/MUE & the Chiari treatments. So Bella is now going onto chemo infusion #4 next week in an effort to quieten her GME flareup. We work with a lovely team of neurologist/oncologist who have dialed in her her dosages and Bella seems to be tolerating the infusions quite well. She is going every 4weeks right now. She is also on a taper of the Prednisolone. We have managed to keep her weight under control quite well (7.2 lbs) with resorting to low calorie snacks like green beans and cauliflower. Thank goodness she loves all sorts of veggies - lol. I am feeding her a diet of lightly cooked food from Small Batch - interchange btwn turkey and beef. Her pre and post-infusion bloodwork has been coming back perfect. She’s full of energy and seems to be happy happy. Sounds like our specialist wants to give her about 7-8 infusions as Bella continues a slow Pred taper and then reassess her brain status with an MRI early next year. This will give us an idea of the status of the GME inflammation. They say about 2/3 of the small doggies end up responding very well to this tx course. We are super grateful and continue to have hope and faith that we’ll enjoy many more years together with our lil furball. My question is how do we manage vaccinations moving forward? I haven’t had this conversation with the neurologist yet. But I know that vaccinations are a no-no (they trigger the GME flareups instantly!). All of Bella’s titers so far are fine, so we know she doesn’t need any updates currently. I use Dr. Mercola’s natural flea/tick spray on her when we need to. She’s pretty much an indoor dog, and we play a lot indoors so she gets her exercise.
Also, any tips/feedback on how to manage Bella’s food addiction? It started when she went on Prednisolone and I am cognizant of the fact that she was very hungry all the time due to the meds. But now, she’s on half the dose with the taper but I think she’s built the habit of begging for food all the time! This girl LIVES FOR FOOD! It’s funny and it’s not. Any thoughts? Thank you all again - I’m truly grateful for this forum and all the support from the members. 🐶😍

 

[mss]

I'm glad to hear she's doing well with the treatment! I hope it continues to be a success.

I'm not sure how to cure little glutton behavior. Maybe see if you can ignore it, distract her with play, or maybe make her work for a few pieces of kibble -- practice sits, downs, any tricks you know.

 

[wkomorow]

So glad she is responding to treatment I hope it continues.

 

[edelweiss]

Sue has a pup w/Chiara so hopefully she will see this & respond! I know he (Tyler) is on prednisone for seizures. Our Lisi has immune issues & had severe vasculitis some years ago (she is now 11 & has cancer). She is a fighter/trooper & has overcome some giant obstacles although she did lose one entire ear flap & part of another one when she had vasculitis.
It sounds like you have wonderful medical care for Bella~
Let us know how this goes!

 

[Fahreen]

Sue has a pup w/Chiara so hopefully she will see this & respond! I know he (Tyler) is on prednisone for seizures. Our Lisi has immune issues & had severe vasculitis some years ago (she is now 11 & has cancer). She is a fighter/trooper & has overcome some giant obstacles although she did lose one entire ear flap & part of another one when she had vasculitis.
It sounds like you have wonderful medical care for Bella~
Let us know how this goes!

Sandi, thank you … I am happy to connect with Sue if she has any questions about Chiari. Pls feel free to let her know if you know her personally and can PM her. I hope Tyler’s doing alright. I’ve learned a bit about this condition from our experience and personal research. I am also happy that your Lisi & Kitzi are doing well. These babies are such lil troopers! 😍

 

[edelweiss]

Thank you! Tyler has had this for a long time & Sue has done a great job of caring for him! She is not on SM much anymore as she is mainly on FB. She is the American Maltese Rescue Association co-ordinator for the northeast. She has been a valuable & knowledgable SM member for a long time so you two could interact well.

 

[Fahreen]

Thank you! Tyler has had this for a long time & Sue has done a great job of caring for him! She is not on SM much anymore as she is mainly on FB. She is the American Maltese Rescue Association co-ordinator for the northeast. She has been a valuable & knowledgable SM member for a long time so you two could interact well.

I’d love that! I bet she’s just chockfull of knowledge in this matter! Unfortunately, I don’t participate on any social media platforms.