5/14 - Xander | Too early for an AMPS

[Brianna & Xander]

5/14/25

Good morning (posting much earlier than usual!) This is probably gonna be a depressing one, so please don't feel like you have to read it if you're not up for that.

Things have continued to be a rollercoaster. The overnight cycle was technically really good. No bounce from those lows at the end of the AM cycle; the highest we got was 201 all night, and nothing <40. But it was still a really miserable night. Unless he's somehow still having significant depot action (I don't see why that would be), my choice to do a full decrease was the right move, because he didn't even go back to significantly >100 until +2. I imagine if I hadn't given a full reduction we would've easily been back in the limes overnight.

A few things lately:

1) I really try to give him a +1, +2 and +3 snack to try to keep him steady. Sometimes he happily eats each snack, but a lot of the time he doesn't want them. That probably doesn't help his curve, but aside from force feeding him (which seems like overkill and not something I could really even manage with him) I don't know how to solve that. He's better about it during the AM cycle than the PM cycle, especially lately, because...

2) I try to stay up as late as I possibly can to give him these snacks before I go to bed, but again, as a chronically ill creature myself I simply can't always do that. So for instance, if I have to go to bed at 10:30, I'll give him his +2, +3 and a snack for overnight all at once for him to graze on. Usually, he follows me to bed and won't eat the food unless I literally put the bowl on the bed next to me. Suddenly now he won't come to bed with me anymore, but if I leave him food where he is, he won't eat it either. He'll eventually come wake us up between 3-5 asking for fresh food. We tried an auto-feeder and he wouldn't use it.

3) Not coming to bed with me also means that I have to put the Libre phone somewhere as central as possible so that it'll still receive data while he's wandering around. Especially right now with how unpredictable he's been, missing something worries me so much that I wake up every few minutes to make sure that my main phone is still receiving data from the Libre phone.

This morning I woke up around 2:30 after a whopping 2-3 hours of sleep and saw that he was at 58. Which is fine, but based on all recent experience, he will go lower. Naturally as expected he once again hadn't bothered to eat the food I left, so I got up and prepared him the same LC food but fresh. As I was doing that the Libre alarm went off for 54. (Again, fine, but he tends to go lower.) Took a long time to get him to eat it, and I laid there for hours petting him to try to get him calm enough to stay there so I could definitely monitor him and maybe get back to sleep. I fell asleep at about 5 and the Libre alarm woke me back up at 5:08. Literally less than 10 minutes of sleep.

He never went under 50 so I didn't have to give anything aside from LC, but it was another sleepless night. I already hadn't been feeling well before any of this started on Monday (have felt like I was going to pass out, headache, etc) but the constant stress and lack of sleep is making it all so much worse. It's so bad that I'm even having nightmares, which I take a medication to suppress.

There were several kitties here who at one point seemed to be doing the exact same thing as Xander at the same time, and it seems like everyone's doing so well. Which is amazing, of course! I'm so happy for everyone! But here we are, still stuck and struggling with every step. It feels a little like being the last kid whose parent didn't pick them up from school and they're just sitting on the sidewalk alone at 7 waiting for someone to show up. Every time it seems like things are getting better, there's a major dive or something like this that makes us basically start all over. I just wish it could finally be our turn to catch a real break.

 

[Brianna & Xander]

Some responses for yesterday's thread:

Oh Brianna, what a rollercoaster

You have done such a good job keeping him safe - well done!
I know it can be absolutely exhausting physically and emotionally, and not sustainable long term. If you need to make changes or deviate slightly from the protocol for your sanity and wellbeing you should do so without guilt

I think you will feel more secure about handling lower numbers when you have more experience with carb manipulation - more arrows in your quiver as it were. I see on your spreadsheet you tried 20% carb food and it caused a nice bump. Give honey a try too. Once you have an array of MC and HC foods plus honey and treats, and have a good idea how he will respond to them, you will find managing lower numbers much less stressful.

Hope you both had a good night and an easier day today

Thanks, Helen! I really appreciate the support. I really try to do the right thing, but sometimes the right thing is protecting both of us.

I did try the 20% and it did seem to help some! I'm incredibly surprised he didn't throw it up, because beef almost always makes him sick. I took some screenshots from the Dr. Lisa carb pdf thing and am going to see if I can find more options for different levels (like 16%, 18%, >20%, etc). When I last looked it was hard to find anything. But I'll try again. If I can't, maybe the honey mixed in with the MCs I have will have to do.

Hi Brianna, I’m sorry I was already in bed when you posted this last night (sucks we are 3 hours apart and I run to get in bed if Ivy isn’t diving low)

I’m a believer in doing the best we can for our cats, but it’s also imperative to take some care of ourselves too, or we can’t care for them (oxygen mask on yourself first, like on an airplane)

As we’ve mentioned, you can always raise his dose if it’s a failed reduction, so it’s not permanent!
It looks like he came up a bit an after your shot last night.
I hope you got some rest!
Sending you lots of hugs and support

No need to be sorry! I'm so glad you were able to get some rest again! I agree though, sucks that we're 3 hours apart! I think I'm one of only like 3 of us on the west coast. But that's not your fault!


Thank you so much for all of your continuous support. I can't tell you how much I appreciate you!

 

[Staci & Ivy]

Some responses for yesterday's thread:



Thanks, Helen! I really appreciate the support. I really try to do the right thing, but sometimes the right thing is protecting both of us.

I did try the 20% and it did seem to help some! I'm incredibly surprised he didn't throw it up, because beef almost always makes him sick. I took some screenshots from the Dr. Lisa carb pdf thing and am going to see if I can find more options for different levels (like 16%, 18%, >20%, etc). When I last looked it was hard to find anything. But I'll try again. If I can't, maybe the honey mixed in with the MCs I have will have to do.



No need to be sorry! I'm so glad you were able to get some rest again! I agree though, sucks that we're 3 hours apart! I think I'm one of only like 3 of us on the west coast. But that's not your fault!


Thank you so much for all of your continuous support. I can't tell you how much I appreciate you!

Hi Brianna,
I totally understand how you feel. Sometimes it can feel hard when you see other kitties doing so well and being so well regulated.

I’ve been at this for 2 1/2 years and Ivy is still up and down and I spend many nights awake and “sleeping, haha” on the sofa and feeding her through the night.
And then my husband comes down in the morning and says “how did you sleep”?
Ha ha ha ha ha ha ha ha, if you mean, five or 10 minutes here or there, sure it was great

So I totally understand how you’re feeling. All you can do is take it one day at a time and do the best that you can.
And if it means giving him a little bit higher carbs when he’s in the 50s, so be it, so he may coast along a little bit higher so you can both try to rest a little and maybe feed him a little less in the overall if you’re getting him to coast a little higher during these very difficult cycles.

And again, if you have to take a reduction for both of your sake, you do it and then reevaluate in a couple days when the depot stabilizes and you see where things are.

You’re doing a phenomenal job and I know it’s extra hard when you don’t feel well yourself. Plus, add sleep deprivation on top of it, so it makes it really, really hard.

Hopefully, in time, things will get easier and he will get more regulated.
One day at a time
Sending you both lots of hugs and hoping today is a better day and you can get some rest wherever you can catch it

 

[Wendy&Neko]

Unless he's somehow still having significant depot action (I don't see why that would be)

The larger depot influences 4-6 cycles after a decrease. Last night was cycle 3. So yes, that could have been action from the 2.75 unit dose. Paws crossed this dose holds and helps you get more sleep.

Like Staci suggested, it's fine to give higher carbs if you need a break for a more solid couple hours sleep. It may take some experimenting to find a food or food +karo/honey/syrup combination that does that for Xander without slingshotting him to the moon. Ideally you want to bump him up around 30 points or so. In many ways, I think I was blessed not to have the Libre technology available when Neko was around, I didn't feel the need to always be on top of the numbers every hours. Knowing me, I would have been loving the extra data too much.

FYI - a comment about the spreadsheet. I was looking for when you started a new Libre and it was like finding a single tree in the forest. Yes, I eventually found it. You have a LOT of data in the Remarks column. Which in turn makes the cells very long and I can't see very many days at once on the screen, sometimes only two. I got so I can look at patterns of data over time, but it helps if I can actually see several days worth. Could you widen the size of the Remarks column so that the cells shrink in height? There are also a few acronyms and saying used over the time you may wish to adopt to shorten the length of the text. For example CPC=clean plate club, or finished all the food. T&G is used for Turkey & Giblets, etc. You also don't need to state the dose given in Remarks, as it's also on the Units columns. Hoping these tips can save you a little time on SS entry and make it easier for others to see.

 

[Lauren & Esse]

...Usually, he follows me to bed and won't eat the food unless I literally put the bowl on the bed next to me. Suddenly now he won't come to bed with me anymore, but if I leave him food where he is, he won't eat it either. He'll eventually come wake us up between 3-5 asking for fresh food. We tried an auto-feeder and he wouldn't use it...

Just wanted to say that I find this SO relatable, and it is very irritating. Esse has never liked to eat by himself, so in order to prevent him from waking us up at 3am to go get a snack, he gets a nightly serving of LC food that goes upstairs into the bedroom when we go to bed, whether or not he's coming with us for bed right away. After a few weeks of that routine he got used to coming upstairs and looking in one spot for his nighttime food. (Though he still sometimes wakes us up at 6ish for a fresh plate.)

I think for him its an evolutionary response--he wants someone to watch his back for protection while he's vulnerable with his head down--which makes me feel slightly better, that he thinks we're on the same team. But still. Very annoying in the middle of the night. And for you to have to add hypo worries on top!! Terrible.

 

[Briana + Binx]

My heart breaks. There are a 101 things I wish I could say - I can feel the sadness, the exhaustion, the frustration... and the love you have for Xander. Echoing everyone else in that you should do what you need to do to keep both yourself and Xander healthy. I know it can feel tough making decisions that are atypical to the protocol, but ECID and we've seen that especially Xander. You know him best and can make those decisions better than we can. Like you said too, if the reduction fails, you can always go back up!

1) / 2) The only one thing I'm wondering in my limited knowledge and lack of advice expertise, I wonder if a +5 or +6 snack might work better for Xander (possibility of him actually eating it aside). It was pointed out to me that Binx was usually dropping to limes mid-cycle and once we introduced the +6, it helped reduce those events (besides today). I'm also wondering if he was ever more interested in grazing on dry food (since wet loses its freshness). I know it's high carb, but there's less carb-y dry foods (Binx used to eat DM that I think is 17% or even freeze dried treats that are MC) and since Xander doesn't seem to be too carb sensitive (correct me if I'm wrong), maybe this could help introduce food during his cycles? Would he go for a dry food automatic feeder? Again, not knowledgeable or with much experience, so shoot me down if I'm very off base.

3) This is so difficult - why isn't the sensor range better!! Besides having him sleep overnight in a room with a door closed, it's a tricky one to solve.

The lack of sleep you've been getting is so so difficult, and I believe I remember you saying you already have trouble there, so any sleep you can get is important. It's too bad you can't drop the alarm notification to any less than what you have it to, because like you said, he didn't end up in the limes but it still goes off. Any possibility of you handing this off to your partner one night so you can get some rest? It's almost like a baby monitor haha

And on the last note, that's a truly difficult one. It's very bittersweet like you said. I know I should stfu, because Binx of course has been doing well recently (anti-jinx), but I've seen and felt the same and it might be one of the most difficult things. As if we weren't questioning everything before, when you see it working for others, the doubt REALLY rolls in. I have many a times contemplated going back to SLGS because it just felt too exhausting otherwise. I don't know how to solve this any of this. Sometimes I would take a break for a few days and give myself some grace to go as I needed.

On top of everything, I feel like every day you've been learning something new and making adjustments. I feel like if you scroll up through you SS, there are less and less greens than there are now. My hope for you both is that one day you'll make a new change and that'll be the experiment that gets you somewhere. It's hard to hope and if you don't have that in you right now, Binx and I will hope for you

I'm so sorry for everything you're going through. You're working incredibly hard for Xander and doing the absolute most for him

 

[Staci & Ivy]

My heart breaks. There are a 101 things I wish I could say - I can feel the sadness, the exhaustion, the frustration... and the love you have for Xander. Echoing everyone else in that you should do what you need to do to keep both yourself and Xander healthy. I know it can feel tough making decisions that are atypical to the protocol, but ECID and we've seen that especially Xander. You know him best and can make those decisions better than we can. Like you said too, if the reduction fails, you can always go back up!

1) / 2) The only one thing I'm wondering in my limited knowledge and lack of advice expertise, I wonder if a +5 or +6 snack might work better for Xander (possibility of him actually eating it aside). It was pointed out to me that Binx was usually dropping to limes mid-cycle and once we introduced the +6, it helped reduce those events (besides today). I'm also wondering if he was ever more interested in grazing on dry food (since wet loses its freshness). I know it's high carb, but there's less carb-y dry foods (Binx used to eat DM that I think is 17% or even freeze dried treats that are MC) and since Xander doesn't seem to be too carb sensitive (correct me if I'm wrong), maybe this could help introduce food during his cycles? Would he go for a dry food automatic feeder? Again, not knowledgeable or with much experience, so shoot me down if I'm very off base.

3) This is so difficult - why isn't the sensor range better!! Besides having him sleep overnight in a room with a door closed, it's a tricky one to solve.

The lack of sleep you've been getting is so so difficult, and I believe I remember you saying you already have trouble there, so any sleep you can get is important. It's too bad you can't drop the alarm notification to any less than what you have it to, because like you said, he didn't end up in the limes but it still goes off. Any possibility of you handing this off to your partner one night so you can get some rest? It's almost like a baby monitor haha

And on the last note, that's a truly difficult one. It's very bittersweet like you said. I know I should stfu, because Binx of course has been doing well recently (anti-jinx), but I've seen and felt the same and it might be one of the most difficult things. As if we weren't questioning everything before, when you see it working for others, the doubt REALLY rolls in. I have many a times contemplated going back to SLGS because it just felt too exhausting otherwise. I don't know how to solve this any of this. Sometimes I would take a break for a few days and give myself some grace to go as I needed.

On top of everything, I feel like every day you've been learning something new and making adjustments. I feel like if you scroll up through you SS, there are less and less greens than there are now. My hope for you both is that one day you'll make a new change and that'll be the experiment that gets you somewhere. It's hard to hope and if you don't have that in you right now, Binx and I will hope for you

I'm so sorry for everything you're going through. You're working incredibly hard for Xander and doing the absolute most for him

Beautifully said, Briana

 

[Laurie & Petey]

I'm sorry it's been such a challenge on so many levels. We are here for you and Xander. It feels like big swings one way or the other. Do you have a range you would like to see Xander in on average that meets your needs and his? A range that keeps you breathing and sleeping.

I agree with Wendy, the Libre made me even more obsessive and focused on micro changes instead of the big overall picture. Are there maybe 4 - 6 data points you could choose to focus on for your desired average range?

Sometimes it's just hard and frustrating and we still legit have no control and just want to catch a break to make it just a little easier. The struggle is real and we got you.

 

[Madeline & Butch]

I'm so sorry, Brianna. I completely understand how you feel and can relate so much. You are doing such a great job caring for Xander.
I have given mc before going below 50 to steady the cycle. Especially when I need rest.

 

[Briana + Binx]

I'm sorry it's been such a challenge on so many levels. We are here for you and Xander. It feels like big swings one way or the other. Do you have a range you would like to see Xander in on average that meets your needs and his? A range that keeps you breathing and sleeping.

I agree with Wendy, the Libre made me even more obsessive and focused on micro changes instead of the big overall picture. Are there maybe 4 - 6 data points you could choose to focus on for your desired average range?

Sometimes it's just hard and frustrating and we still legit have no control and just want to catch a break to make it just a little easier. The struggle is real and we got you.

Two things you said here Laurie got me curious.
I'm not sure if it's helpful or more frustrating for you Brianna, but I decided to make a duplicate SS with Binx's Libre numbers, just to see what range he was in (since there can be such large discrepancies between that and the handheld). Here's the Libre SS numbers.

Of course, generally he looks pretty good in the blues but standard TR protocol wants greens. So, by that standard he's not "in range". Also, the few times he did present with greens were the times we had limes on the handheld and therefore took a reduction. In total during this time he's had 3 reductions... if we based those on his Libre numbers, he'd actually be getting at least an increase. So I'm curious about what Laurie said regarding an average range that keeps you comfortable - maybe it's different than standard TR? Other members like @Staci & Ivy have custom dosing.

The second thing is that looking at all those Libre numbers shows more highs and lows than I've captured with the fewer handheld readings (min. 4 per day). Granted, I did take fewer than normal when initially putting the Libre on, but still - if you were to delete 70% of the cells in the Libre SS, I wonder if overall it would've seemed like the numbers were better or less stressful. Maybe we'd miss some yellows or pinks? That was the other thing Laurie mentioned that caught my eye, 4-6 data points instead of all. Understandably, much harder to not obsess with the data available. I constantly check my phone with the Libre right now.

Again, I don't know if that's at all helpful, but since I was curious myself, thought I'd share in case it is.
Hope you're getting some much needed rest

**Edit: I know ECID so maybe these are only how Binx's numbers vary between the handheld/Libre, but I think the questions still apply.

 

[Diane Tyler's Mom GA]

 

[Brianna & Xander]

Hi Brianna,
I totally understand how you feel. Sometimes it can feel hard when you see other kitties doing so well and being so well regulated.

I’ve been at this for 2 1/2 years and Ivy is still up and down and I spend many nights awake and “sleeping, haha” on the sofa and feeding her through the night.
And then my husband comes down in the morning and says “how did you sleep”?
Ha ha ha ha ha ha ha ha, if you mean, five or 10 minutes here or there, sure it was great

So I totally understand how you’re feeling. All you can do is take it one day at a time and do the best that you can.
And if it means giving him a little bit higher carbs when he’s in the 50s, so be it, so he may coast along a little bit higher so you can both try to rest a little and maybe feed him a little less in the overall if you’re getting him to coast a little higher during these very difficult cycles.

And again, if you have to take a reduction for both of your sake, you do it and then reevaluate in a couple days when the depot stabilizes and you see where things are.

You’re doing a phenomenal job and I know it’s extra hard when you don’t feel well yourself. Plus, add sleep deprivation on top of it, so it makes it really, really hard.

Hopefully, in time, things will get easier and he will get more regulated.
One day at a time
Sending you both lots of hugs and hoping today is a better day and you can get some rest wherever you can catch it

Thanks, Staci. Everyone here is always so kind and I can't say how much it means to me.

2 1/2 years is sooo long and I can only imagine! If that's what it takes I'll absolutely do it, our babies are worth all of it. I just can't help feeling like everyone's managing to jump onto the train and we can't quite catch it or something.

Your suggestion about maybe giving him some higher carbs in the 50s (as opposed to only intervening below 50) is certainly a good idea to think about. If 50-90 (or 120, whichever the actual metric is) is "good enough," maybe I don't have to let him get so close to the brink and make things even worse for myself. Obviously then comes in the "but we don't really know how low he actually is" thing, but like you said, all we can do is the best we can. I don't feel like anyone could say I'm not giving this everything I've got, so maybe I should give myself a break too.

Thank you for the encouragement!!!

 

[Brianna & Xander]

The larger depot influences 4-6 cycles after a decrease. Last night was cycle 3. So yes, that could have been action from the 2.75 unit dose. Paws crossed this dose holds and helps you get more sleep.

Like Staci suggested, it's fine to give higher carbs if you need a break for a more solid couple hours sleep. It may take some experimenting to find a food or food +karo/honey/syrup combination that does that for Xander without slingshotting him to the moon. Ideally you want to bump him up around 30 points or so. In many ways, I think I was blessed not to have the Libre technology available when Neko was around, I didn't feel the need to always be on top of the numbers every hours. Knowing me, I would have been loving the extra data too much.

FYI - a comment about the spreadsheet. I was looking for when you started a new Libre and it was like finding a single tree in the forest. Yes, I eventually found it. You have a LOT of data in the Remarks column. Which in turn makes the cells very long and I can't see very many days at once on the screen, sometimes only two. I got so I can look at patterns of data over time, but it helps if I can actually see several days worth. Could you widen the size of the Remarks column so that the cells shrink in height? There are also a few acronyms and saying used over the time you may wish to adopt to shorten the length of the text. For example CPC=clean plate club, or finished all the food. T&G is used for Turkey & Giblets, etc. You also don't need to state the dose given in Remarks, as it's also on the Units columns. Hoping these tips can save you a little time on SS entry and make it easier for others to see.

The specific goal of bumping by about 30 points is really useful, thank you for that! I never know what's considered a "good" boost (aside from him not being <50 anymore) but that's a great, measurable thing to watch for. Today I went looking again for some more HC variety and had the same problem as I have all the other times which is just that for whatever reason I just can't find any of it. I did get a variety pack that supposedly should be 16%, 18% and 20%. The absolute highest I could even find was 21% but I got some of that and I guess will put some honey in it if I need to. (Tuna and cheese and honey... what an awful combo. ) So now for MC and HC I'll have 12%-21%.

Re: spreadsheet - I have tried sooo many times to get the remarks column to clip (so that it stays the regular cell size unless you purposely open it). It shows up that way on my end, but something about the "publish for web" version makes it not cooperate. I've been thinking I wanted to cut things down to more abbreviations anyway, so I'll do that. Sorry that it made things difficult.

 

[Brianna & Xander]

Just wanted to say that I find this SO relatable, and it is very irritating. Esse has never liked to eat by himself, so in order to prevent him from waking us up at 3am to go get a snack, he gets a nightly serving of LC food that goes upstairs into the bedroom when we go to bed, whether or not he's coming with us for bed right away. After a few weeks of that routine he got used to coming upstairs and looking in one spot for his nighttime food. (Though he still sometimes wakes us up at 6ish for a fresh plate.)

I think for him its an evolutionary response--he wants someone to watch his back for protection while he's vulnerable with his head down--which makes me feel slightly better, that he thinks we're on the same team. But still. Very annoying in the middle of the night. And for you to have to add hypo worries on top!! Terrible.

I'm sorry that you can relate (because it is very annoying lol) but I'm glad someone gets it! I do actually put the food in the spot he would want it regardless of if he comes, in hopes that if he does eventually come down he eats it. I guess he waits so long to ever come down that it's not fresh enough for him anymore. But yeah, I'm worried that not eating will make the curve worse, and then worried separately about not getting data and missing a hypo.

 

[Brianna & Xander]

My heart breaks. There are a 101 things I wish I could say - I can feel the sadness, the exhaustion, the frustration... and the love you have for Xander. Echoing everyone else in that you should do what you need to do to keep both yourself and Xander healthy. I know it can feel tough making decisions that are atypical to the protocol, but ECID and we've seen that especially Xander. You know him best and can make those decisions better than we can. Like you said too, if the reduction fails, you can always go back up!

1) / 2) The only one thing I'm wondering in my limited knowledge and lack of advice expertise, I wonder if a +5 or +6 snack might work better for Xander (possibility of him actually eating it aside). It was pointed out to me that Binx was usually dropping to limes mid-cycle and once we introduced the +6, it helped reduce those events (besides today). I'm also wondering if he was ever more interested in grazing on dry food (since wet loses its freshness). I know it's high carb, but there's less carb-y dry foods (Binx used to eat DM that I think is 17% or even freeze dried treats that are MC) and since Xander doesn't seem to be too carb sensitive (correct me if I'm wrong), maybe this could help introduce food during his cycles? Would he go for a dry food automatic feeder? Again, not knowledgeable or with much experience, so shoot me down if I'm very off base.

3) This is so difficult - why isn't the sensor range better!! Besides having him sleep overnight in a room with a door closed, it's a tricky one to solve.

The lack of sleep you've been getting is so so difficult, and I believe I remember you saying you already have trouble there, so any sleep you can get is important. It's too bad you can't drop the alarm notification to any less than what you have it to, because like you said, he didn't end up in the limes but it still goes off. Any possibility of you handing this off to your partner one night so you can get some rest? It's almost like a baby monitor haha

And on the last note, that's a truly difficult one. It's very bittersweet like you said. I know I should stfu, because Binx of course has been doing well recently (anti-jinx), but I've seen and felt the same and it might be one of the most difficult things. As if we weren't questioning everything before, when you see it working for others, the doubt REALLY rolls in. I have many a times contemplated going back to SLGS because it just felt too exhausting otherwise. I don't know how to solve this any of this. Sometimes I would take a break for a few days and give myself some grace to go as I needed.

On top of everything, I feel like every day you've been learning something new and making adjustments. I feel like if you scroll up through you SS, there are less and less greens than there are now. My hope for you both is that one day you'll make a new change and that'll be the experiment that gets you somewhere. It's hard to hope and if you don't have that in you right now, Binx and I will hope for you

I'm so sorry for everything you're going through. You're working incredibly hard for Xander and doing the absolute most for him

You're so sweet, Briana. I appreciate your compassion so much.

1) / 2) - Possibly! I thought I'd finally found the "right" routine when he was actually eating each +1/+2/+3 snack (around the same time that he was getting really good cycles like a month ago or whatever) so it's been rough not having him willing to do that. I could try the +5/+6. When I got him a snack in the middle of the night last night that was about +6 and he ran downstairs excitedly (though possibly more excited about my being awake than the food). I'd have to set an alarm which is really rough (I have narcolepsy, so sleep is fragile and important, but it may be what I have to do ). He was actually only ever on dry food up until mid-January. He's never seemed particularly interested in it though and often vomited it up. I don't think he's particularly carb sensitive, but I've always had a hard time telling. When he eats his normal meals I feel like there's barely a visible reaction, but that's only 2-3%. I'm hesitant to go back to anything dry now that we've eliminated it, and I know we couldn't follow TR that way, but but again, maybe it's what we'd have to do. Thank you for the ideas! The later snack seems really promising and I hadn't even considered the other option so I like having ideas!

3) I know!! Why?! I was just Googling trying to see if there's any way to make it better, like how you can boost wifi range with a USB antenna thing, like could I do that for bluetooth? I couldn't find anything. My partner would know and they said they don't know of anything like that either, so we may be out of luck. What's really annoying is it's also not just the 33 feet, but sometimes just having a wall between it. Our apartment has a loft, so the spot where I put the phone when he's hanging out up there is in the living room, where the celing goes all the way up to the loft (if that makes sense). It's also directly on the other side of my bedroom wall. If he decides to come in the bedroom while it's out there, it'll stop receiving data even though he's literally like 10 feet away, because there's a wall.

And yes to the alarm part! I really wish I could at least lower the threshold - the lowest alarm goes off at 54 and it can't be turned off or adjusted. And it's so freaking loud. My partner actually worked from home today specifically to stay with me and watched him (and did his snacks) so I could sleep for a good 3 hours this morning. First time since December that I wasn't on call and could just sleep.

You shouldn't stfu! And I sincerely hope that I didn't come across as "I wish no one else were doing well" because I absolutely do not feel that way - I'm overjoyed that Binx (and everyone else who is) is doing so well! It feels lik a triumph for all of us because we're all working so hard for the same thing an care about each other and each other's kitties. It's just hard to always be waiting for our turn, I guess. And yes, it's like it just plants seeds of doubt. Like if everyone else is getting the hang of this, I must just be doing something wrong/not trying hard enough, etc. I think you're right that we kind of just need to fall somewhere in the middle - sometimes it's too much and we have to be a little less perfect so that we can at least have enough strength to try again tomorrow. And if you've been doing that and giving yourself grace for a few days when needed and Binx is doing this well, that's a pretty good sign that I could do the same without it being the end of the world (if that makes sense).

It's true, overall he is ABSOLUTELY better than he was. My partner and I were just saying that even if things aren't great, if I weren't doing this we'd've lost him a long time ago. He's happy, he loves cuddles, and he even plays again! So I must be doing something right, even if it's not perfect.

Thank you so much for such a thoughtful, sweet response. I wish I could give everyone a hug.

 

[Brianna & Xander]

I'm sorry it's been such a challenge on so many levels. We are here for you and Xander. It feels like big swings one way or the other. Do you have a range you would like to see Xander in on average that meets your needs and his? A range that keeps you breathing and sleeping.

I agree with Wendy, the Libre made me even more obsessive and focused on micro changes instead of the big overall picture. Are there maybe 4 - 6 data points you could choose to focus on for your desired average range?

Sometimes it's just hard and frustrating and we still legit have no control and just want to catch a break to make it just a little easier. The struggle is real and we got you.

Thank you, Laurie!

It definitely is big swings. Except for that last third of April, where it seemed like things were finally clicking (until a dive). I'm not sure what that range would be. Obviously I'd love to have him in remission eventually, but if I could keep him steady in the 70s (especially overnight, when I can't watch as closely) I think I'd be a lot less nervous all the time, at least after some time of seeing that he doesn't dive.

I tend to be a very data-driven person (all details, struggle to see the big picture). You should see my private spreadsheets. Someday I'll take screenshots and show what all my tracking actually looks like lol But I do that so I can try to find trends and correlations. Do you (or anyone) have a suggestion for maybe what I should try to pay the most attention to? I'm always so afraid that any missed datapoint will be the crucial one (or literally life and death), which is exhausting.

 

[Brianna & Xander]

I'm so sorry, Brianna. I completely understand how you feel and can relate so much. You are doing such a great job caring for Xander.
I have given mc before going below 50 to steady the cycle. Especially when I need rest.

Thanks, Madeline! I'm sorry that you can relate, but I'm glad I'm not alone. You're doing an amazing job taking care of Butch too!

 

[Brianna & Xander]

Two things you said here Laurie got me curious.
I'm not sure if it's helpful or more frustrating for you Brianna, but I decided to make a duplicate SS with Binx's Libre numbers, just to see what range he was in (since there can be such large discrepancies between that and the handheld). Here's the Libre SS numbers.

Of course, generally he looks pretty good in the blues but standard TR protocol wants greens. So, by that standard he's not "in range". Also, the few times he did present with greens were the times we had limes on the handheld and therefore took a reduction. In total during this time he's had 3 reductions... if we based those on his Libre numbers, he'd actually be getting at least an increase. So I'm curious about what Laurie said regarding an average range that keeps you comfortable - maybe it's different than standard TR? Other members like @Staci & Ivy have custom dosing.

The second thing is that looking at all those Libre numbers shows more highs and lows than I've captured with the fewer handheld readings (min. 4 per day). Granted, I did take fewer than normal when initially putting the Libre on, but still - if you were to delete 70% of the cells in the Libre SS, I wonder if overall it would've seemed like the numbers were better or less stressful. Maybe we'd miss some yellows or pinks? That was the other thing Laurie mentioned that caught my eye, 4-6 data points instead of all. Understandably, much harder to not obsess with the data available. I constantly check my phone with the Libre right now.

Again, I don't know if that's at all helpful, but since I was curious myself, thought I'd share in case it is.
Hope you're getting some much needed rest

**Edit: I know ECID so maybe these are only how Binx's numbers vary between the handheld/Libre, but I think the questions still apply.

I'm not sure what the custom dosing would be, but that seems very possible! Like you said, Staci & Ivy have kind of had to create their own protocol. I don't particularly feel equipped to make my own and it seems like something that probably came with experience, but maybe eventually I'll get there. I guess in a way I kind of already did, in that I've had to make judgement calls about "disregarding" a <40 because I doubted its authenticity, etc.

That is something I've thought about and I think you're right, that maybe if I was missing some of those pinks or yellows maybe I'd feel like things were less bad. But then my first thought is "what if I missed a lime?" Like you said, it's REALLY had not to obsess over the details when they're right there. And for the billionth time I wish I were able to manually test. I wonder how many problems would magically vanish (like he's not actually as low or as high as it seems). Alas one of the few things that got less stressful by "letting go" and being imperfect is by stopping trying to force it. Sigh.

Maybe when I'm more awake I should make a duplicate spreadsheet and just go in and delete every other hour or something like that and scroll out to see how different it looks? Just tossing out ideas.

 

[Brianna & Xander]

Also: I apologize for how long it took me to respond to all of these! It wasn't out of a lack of interest but a combination of a very long (and needed) nap earlier and then for some reason not getting any emails/notifications, so I'm gonna have to go look at my settings and see what I messed up. lol

 

[Laurie & Petey]

Thank you, Laurie!

It definitely is big swings. Except for that last third of April, where it seemed like things were finally clicking (until a dive). I'm not sure what that range would be. Obviously I'd love to have him in remission eventually, but if I could keep him steady in the 70s (especially overnight, when I can't watch as closely) I think I'd be a lot less nervous all the time, at least after some time of seeing that he doesn't dive.

I tend to be a very data-driven person (all details, struggle to see the big picture). You should see my private spreadsheets. Someday I'll take screenshots and show what all my tracking actually looks like lol But I do that so I can try to find trends and correlations. Do you (or anyone) have a suggestion for maybe what I should try to pay the most attention to? I'm always so afraid that any missed datapoint will be the crucial one (or literally life and death), which is exhausting.

I have a tendency to test Pete too much for the same reason, I don't want to miss something. I'm trying to get better at it but we don't have a lot of green data yet to see a pattern.

So I totally get it! I'm a very data driven person myself, so too much data made for a lot of noise and made me panic more......mainly because of how it measures BG, which just amplifies those preceived swings. And like Briana I was constantly checking my phone!

I like to think of the Libre testing as dropping a bag of sugar in the ocean and then walking up and down the coast taking BG tests... the concentrations will be different and fluctuate constantly. This is my understanding of interstitial fluid BG testing.

At a quick glance it looks like +2 +5 and +9 are action hours for Xander on average. And if one of those times shows a lower number you have the data to check the next hour and keep him safe.

I know you'll find something that works for you. We all have to, our sanity depends on it. We're chasing a mystical dragon and most of us will only ever catch a glimpse now and again.

️

 

[Staci & Ivy]

I'm not sure what the custom dosing would be, but that seems very possible! Like you said, Staci & Ivy have kind of had to create their own protocol. I don't particularly feel equipped to make my own and it seems like something that probably came with experience, but maybe eventually I'll get there. I guess in a way I kind of already did, in that I've had to make judgement calls about "disregarding" a <40 because I doubted its authenticity, etc.

The custom dosing I do has indeed come out of a necessity from my experience. Neither protocol was working for us, but I try to follow TR more closely. I try not to wait an entire week to make a dose change.

You shouldn’t be letting Xander drop down to 40 per TR ( that’s for a cat who was diagnosed over one year). For under a year it’s 50.

As for the alarms on the Libre, if you haven’t already, get rid of the high threshold alarms.
Yes, the one under 54 is not changeable for safety.

I have the same issues of walls and obstacles interfering with the transmission of data.
I move her phone around my house all day long.

Interestingly, enough, though, I have figured out strategic places that I can put the phone. For example, in my bedroom, there’s a chair she likes to sleep on and directly underneath that chair is my husband‘s office. If I put the phone right under where the chair is in his office The floor below, the phone actually reads just fine through the ceiling/floor.

In the basement where she likes to hang out in her room there’s a wall where the phone won’t read through.
So, I leave her phone in the doorway of her room and as long as she’s in the adjoining room, it will read her sensor.

One thing I have done to “muffle” her phone from all the noise is make a “burrito” of 2 thick towels, inside I use a pair of very thick socks wrapped around her phone (could be a sweatshirt or something thick). Or, you could get a fat piece of foam from a craft store… get creative.

It’s especially helpful at night to quiet the noise.
I figure my phone will make enough noise if the alerts are going off, I don’t need two phones making all that noise
And if you are on phone calls For work during the day, the same thing (it’s more quiet).

It took me over a year of being tortured by all the noise to figure out a solution

I hope this helps!!

 

[Brianna & Xander]

I have a tendency to test Pete too much for the same reason, I don't want to miss something. I'm trying to get better at it but we don't have a lot of green data yet to see a pattern.

So I totally get it! I'm a very data driven person myself, so too much data made for a lot of noise and made me panic more......mainly because of how it measures BG, which just amplifies those preceived swings. And like Briana I was constantly checking my phone!

I like to think of the Libre testing as dropping a bag of sugar in the ocean and then walking up and down the coast taking BG tests... the concentrations will be different and fluctuate constantly. This is my understanding of interstitial fluid BG testing.

At a quick glance it looks like +2 +5 and +9 are action hours for Xander on average. And if one of those times shows a lower number you have the data to check the next hour and keep him safe.

I know you'll find something that works for you. We all have to, our sanity depends on it. We're chasing a mystical dragon and most of us will only ever catch a glimpse now and again.

️

I'm glad I'm not the only one who really needs/likes data! Keeping in mind the +2, 5 and 9 is a great suggestion, thank you!

I also feel a bit like "I'm not gonna not keep the data that I'm paying to have," lol, but maybe I can have a duplicate sheet for "birdseye view" where I can remove what seems less important and see a bigger picture, at least.

 

[Brianna & Xander]

The custom dosing I do has indeed come out of a necessity from my experience. Neither protocol was working for us, but I try to follow TR more closely. I try not to wait an entire week to make a dose change.

You shouldn’t be letting Xander drop down to 40 per TR ( that’s for a cat who was diagnosed over one year). For under a year it’s 50.

As for the alarms on the Libre, if you haven’t already, get rid of the high threshold alarms.
Yes, the one under 54 is not changeable for safety.

I have the same issues of walls and obstacles interfering with the transmission of data.
I move her phone around my house all day long.

Interestingly, enough, though, I have figured out strategic places that I can put the phone. For example, in my bedroom, there’s a chair she likes to sleep on and directly underneath that chair is my husband‘s office. If I put the phone right under where the chair is in his office The floor below, the phone actually reads just fine through the ceiling/floor.

In the basement where she likes to hang out in her room there’s a wall where the phone won’t read through.
So, I leave her phone in the doorway of her room and as long as she’s in the adjoining room, it will read her sensor.

One thing I have done to “muffle” her phone from all the noise is make a “burrito” of 2 thick towels, inside I use a pair of very thick socks wrapped around her phone (could be a sweatshirt or something thick). Or, you could get a fat piece of foam from a craft store… get creative.

It’s especially helpful at night to quiet the noise.
I figure my phone will make enough noise if the alerts are going off, I don’t need two phones making all that noise
And if you are on phone calls For work during the day, the same thing (it’s more quiet).

It took me over a year of being tortured by all the noise to figure out a solution

I hope this helps!!

I do definitely intervene under 50 (and now I'm planning to start intervening earlier for my own sanity); the only reason I haven't always reduced if he dipped under 50 is when it was questionable (like a tiny blip of 45, or something that seemed blatantly like an error). Especially since he's almost certainly actually as low as the Libre says he is. I do reduce if the drop under 50 is extended and absolutely if I get a "LO." Does that make sense?

I have every alarm turned off except the lowest. At one point we even tried to do some really in-depth stuff outside the app to get it to quiet down, but it just made it entirely silent and obviously that's not good either. I considered wrapping it in something but was worried that that itself would cause transmission issues. That hasn't been the case for you? Oh, and all of the alarms are off for my main phone, unless I'm leaving home for an extended time, then I turn the low ones back on.

I've tried to find some strategic places for the phone! I mentioned it in another comment somewhere but I have a couple of specific spots. During the day if I'm home, it's not a problem because if he's not right next to me, he's in exactly one other place. It's harder at night when he has a few different places he could go and none of the central locations work for all options (and if I'm asleep I don't know that). Maybe I should turn the alarm back on to warn about not receiving data, and then it'll wake me up and I can move it. As annoying as that is.

Thank you, Staci!

 

[Laurie & Petey]

I'm glad I'm not the only one who really needs/likes data! Keeping in mind the +2, 5 and 9 is a great suggestion, thank you!

I also feel a bit like "I'm not gonna not keep the data that I'm paying to have," lol, but maybe I can have a duplicate sheet for "birdseye view" where I can remove what seems less important and see a bigger picture, at least.

I love that idea! Can't hurt to try it, and if it doesn't provide a little more peace of mind, then on to the next thing!

 

[Corky]

@Diane Tyler's Mom GA

 

[Brianna & Xander]

I love that idea! Can't hurt to try it, and if it doesn't provide a little more peace of mind, then on to the next thing!

Yeah, why not?! Thank you for the suggestions!!

 

[Staci & Ivy]

I do definitely intervene under 50 (and now I'm planning to start intervening earlier for my own sanity); the only reason I haven't always reduced if he dipped under 50 is when it was questionable (like a tiny blip of 45, or something that seemed blatantly like an error). Especially since he's almost certainly actually as low as the Libre says he is. I do reduce if the drop under 50 is extended and absolutely if I get a "LO." Does that make sense?

I have every alarm turned off except the lowest. At one point we even tried to do some really in-depth stuff outside the app to get it to quiet down, but it just made it entirely silent and obviously that's not good either. I considered wrapping it in something but was worried that that itself would cause transmission issues. That hasn't been the case for you? Oh, and all of the alarms are off for my main phone, unless I'm leaving home for an extended time, then I turn the low ones back on.

I've tried to find some strategic places for the phone! I mentioned it in another comment somewhere but I have a couple of specific spots. During the day if I'm home, it's not a problem because if he's not right next to me, he's in exactly one other place. It's harder at night when he has a few different places he could go and none of the central locations work for all options (and if I'm asleep I don't know that). Maybe I should turn the alarm back on to warn about not receiving data, and then it'll wake me up and I can move it. As annoying as that is.

Thank you, Staci!

Got it on the low numbers!

Sound like he’s mostly near you so the lack of data is minimal.
I leave the “no data” alarm on but it’s a personal choice.
It is annoying overnight when she can come up to my room and her phone is in the basement.
(My sleep is interrupted, if I am lucky enough to get any)
Like you, I really wish the range was longer and went through walls!!!

 

[Briana + Binx]

You're so sweet, Briana. I appreciate your compassion so much.

1) / 2) - Possibly! I thought I'd finally found the "right" routine when he was actually eating each +1/+2/+3 snack (around the same time that he was getting really good cycles like a month ago or whatever) so it's been rough not having him willing to do that. I could try the +5/+6. When I got him a snack in the middle of the night last night that was about +6 and he ran downstairs excitedly (though possibly more excited about my being awake than the food). I'd have to set an alarm which is really rough (I have narcolepsy, so sleep is fragile and important, but it may be what I have to do ). He was actually only ever on dry food up until mid-January. He's never seemed particularly interested in it though and often vomited it up. I don't think he's particularly carb sensitive, but I've always had a hard time telling. When he eats his normal meals I feel like there's barely a visible reaction, but that's only 2-3%. I'm hesitant to go back to anything dry now that we've eliminated it, and I know we couldn't follow TR that way, but but again, maybe it's what we'd have to do. Thank you for the ideas! The later snack seems really promising and I hadn't even considered the other option so I like having ideas!

3) I know!! Why?! I was just Googling trying to see if there's any way to make it better, like how you can boost wifi range with a USB antenna thing, like could I do that for bluetooth? I couldn't find anything. My partner would know and they said they don't know of anything like that either, so we may be out of luck. What's really annoying is it's also not just the 33 feet, but sometimes just having a wall between it. Our apartment has a loft, so the spot where I put the phone when he's hanging out up there is in the living room, where the celing goes all the way up to the loft (if that makes sense). It's also directly on the other side of my bedroom wall. If he decides to come in the bedroom while it's out there, it'll stop receiving data even though he's literally like 10 feet away, because there's a wall.

And yes to the alarm part! I really wish I could at least lower the threshold - the lowest alarm goes off at 54 and it can't be turned off or adjusted. And it's so freaking loud. My partner actually worked from home today specifically to stay with me and watched him (and did his snacks) so I could sleep for a good 3 hours this morning. First time since December that I wasn't on call and could just sleep.

You shouldn't stfu! And I sincerely hope that I didn't come across as "I wish no one else were doing well" because I absolutely do not feel that way - I'm overjoyed that Binx (and everyone else who is) is doing so well! It feels lik a triumph for all of us because we're all working so hard for the same thing an care about each other and each other's kitties. It's just hard to always be waiting for our turn, I guess. And yes, it's like it just plants seeds of doubt. Like if everyone else is getting the hang of this, I must just be doing something wrong/not trying hard enough, etc. I think you're right that we kind of just need to fall somewhere in the middle - sometimes it's too much and we have to be a little less perfect so that we can at least have enough strength to try again tomorrow. And if you've been doing that and giving yourself grace for a few days when needed and Binx is doing this well, that's a pretty good sign that I could do the same without it being the end of the world (if that makes sense).

It's true, overall he is ABSOLUTELY better than he was. My partner and I were just saying that even if things aren't great, if I weren't doing this we'd've lost him a long time ago. He's happy, he loves cuddles, and he even plays again! So I must be doing something right, even if it's not perfect.

Thank you so much for such a thoughtful, sweet response. I wish I could give everyone a hug.

All the hugs from Binx and I Sorry it’s taken me some time to respond.

Oh maybe he was equally excited for you to be awake and the food? I wonder if the +1/+2/+3 interests him less now because it’s so close to meal time and the +6 is far enough away that he’s developed more of an appetite. Setting an alarm tho is definitely an unpleasant idea, especially with narcolepsy.

And UGH!! Nothing to boost it, that’s so frustrating. Imagine you could pair it with a bunch of phones and just leave one in every room haha. Don’t know how to solve this one unfortunately But so so nice your partner stayed home for you and Xander!! That sleep must’ve been amazing for you. Even 3 hours can do wonders. I’ve thought about how I haven’t been able to sleep in for months and often it breaks my heart but such is life I guess.

Definitely didn’t come across that way at all! It was honest and true and completely relatable. What you said at the end there is so true - he’s happy, he cuddles and he plays! That’s kind of what I hang onto when the numbers aren’t going so well. Of course we’d all love for perfect numbers and that hope of remission probably never leaves, but if they’re happy then something is going right. So glad you both still have Xander in your lives

 

[Briana + Binx]

I'm not sure what the custom dosing would be, but that seems very possible! Like you said, Staci & Ivy have kind of had to create their own protocol. I don't particularly feel equipped to make my own and it seems like something that probably came with experience, but maybe eventually I'll get there. I guess in a way I kind of already did, in that I've had to make judgement calls about "disregarding" a <40 because I doubted its authenticity, etc.

That is something I've thought about and I think you're right, that maybe if I was missing some of those pinks or yellows maybe I'd feel like things were less bad. But then my first thought is "what if I missed a lime?" Like you said, it's REALLY had not to obsess over the details when they're right there. And for the billionth time I wish I were able to manually test. I wonder how many problems would magically vanish (like he's not actually as low or as high as it seems). Alas one of the few things that got less stressful by "letting go" and being imperfect is by stopping trying to force it. Sigh.

Maybe when I'm more awake I should make a duplicate spreadsheet and just go in and delete every other hour or something like that and scroll out to see how different it looks? Just tossing out ideas.

Yes! Exactly all of this!! 100%

I’m guessing with time you’d be able to adapt more of a custom dosing plan and even a range that makes more sense for you. I wish you could manually test too, but so glad you have the Libre option so you can get the numbers you need. Always a trade off it seems with FD.

I would actually be very curious to see that test SS with deleted cells! If you make one, can you share it?

 

[Brianna & Xander]

All the hugs from Binx and I Sorry it’s taken me some time to respond.

Oh maybe he was equally excited for you to be awake and the food? I wonder if the +1/+2/+3 interests him less now because it’s so close to meal time and the +6 is far enough away that he’s developed more of an appetite. Setting an alarm tho is definitely an unpleasant idea, especially with narcolepsy.

And UGH!! Nothing to boost it, that’s so frustrating. Imagine you could pair it with a bunch of phones and just leave one in every room haha. Don’t know how to solve this one unfortunately But so so nice your partner stayed home for you and Xander!! That sleep must’ve been amazing for you. Even 3 hours can do wonders. I’ve thought about how I haven’t been able to sleep in for months and often it breaks my heart but such is life I guess.

Definitely didn’t come across that way at all! It was honest and true and completely relatable. What you said at the end there is so true - he’s happy, he cuddles and he plays! That’s kind of what I hang onto when the numbers aren’t going so well. Of course we’d all love for perfect numbers and that hope of remission probably never leaves, but if they’re happy then something is going right. So glad you both still have Xander in your lives

No need to apologize! It took me a bit to respond to you too! We're all busy trying to take care of our babies and survive at the same time.

Hilariously, even getting multiple phones wouldn't be an option because it'll only pair with one! Oh well. It is what it is.

It was really really nice! I didn't feel normal, but I felt so much better after those few hours of real sleep. They also got us breakfast and took me to my favorite sushi place for dinner, so it was really nice. Kind of like "Okay, these past few days have been so garbage that I'm gonna give you the NICEST day to make up for it."

I'm glad it came across the way it was intended! And yes, at the end of the day, the most important thing is that I still have my best buddy, even if it's a whole lot of work and stress to keep him here.

 

[Brianna & Xander]

Yes! Exactly all of this!! 100%

I’m guessing with time you’d be able to adapt more of a custom dosing plan and even a range that makes more sense for you. I wish you could manually test too, but so glad you have the Libre option so you can get the numbers you need. Always a trade off it seems with FD.

I would actually be very curious to see that test SS with deleted cells! If you make one, can you share it?

Absolutely! Laurie mentioned that at a quick glance it seems like he has activity in +2, +5 and +9, so maybe I'll start there.

I'm also in the middle of trying to fix my Remarks column to be smaller and that's taking a billion years, so I'm not positive when I'll get to that, but when I do I'll share it!

 

[Madeline & Butch]

Thanks, Madeline! I'm sorry that you can relate, but I'm glad I'm not alone. You're doing an amazing job taking care of Butch too!

Thank you, Brianna