10/18 Ozy AMPS-319,PMPS-259

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Re: 10/18 Ozy AMPS-319

Hi Donaleen:

Well I cannot give you any advice regarding dosage and those AWFUL PINKS THAT NEVER MOVE!!!

But I can tell you that: I totally understand!

It is just so difficult to accept why one dose worked so good and now......NADDA. why is that? just doesn't add up right? very very very upsetting to me too.

I, like you, went out this week and bought another 200 buck vial of insulin because I just KNEW the old vial was shot....it just had to be right? just had to be weak.......but no it wasn't the case. But I, like you, had to do something.....

The only thing I can say is that for the longest time my vet was convinced that I was doing everything wrong: I was not even giving the shot most of the time he figured.....because he just could not explain why Tom never moved out of the pinks for a long long long time......but I just kept with the protocol and sure enough.....he finally started to move down....now he is just stuck in the blues and climbing back UP! ??????? WHY? who knows?

But I can only do what I can do and that is to stick with the protocol......many cats, even OTJ cats, had to go back up ....and that makes me feel better

I feel for you.......I "get" it! we all do

~kelly
 
Re: 10/18 Ozy AMPS-319

Thanks Kelly. I looked at your SS.... it doesn't look like you had a time when things looked really good for a few weeks and then looked really bad; that is what Ozy has had.

The protocol says to raise him .5 units of his nadir is over 300; FDMB has modified the protocol to say go up .25 units at a time, even when the nadir is over 300. I am thinking of raising him .25 tonight. That would mean raising his dose .25 after four cycles. That seems less harsh than going up .5 units but more aggressive than waiting 6 cycles. I don't see the point in staying in these pinks.
 
Re: 10/18 Ozy AMPS-319

The modified protocol states:

Increasing the dose:
Hold the dose for 3 - 5 days (6 - 10 consecutive cycles) if nadirs are less than 200 before increasing the dose by 0.25 unit.
After 3 days (6 consecutive cycles)... if nadirs are greater than 200, but less than 300 increase the dose by 0.25 unit.
After 3 days (6 consecutive cycles)... if nadirs are greater than 300 increase the dose by 0.5 unit.
Click to expand...

The bold is mine. That would be my recommendation....as long as he is flat pink, increase by 0.5u every six cycles . Give the depot a chance to catch up to your increases.

And I didn't use the "b" word :-D :-D
 
Re: 10/18 Ozy AMPS-319

I see yellow nadirs on your SS. I would wait the 6 cycles as Marje says, for the depot to fill up and show you what it can do.

Paws crossed this next increase gets him back with the program.
 
Re: 10/18 Ozy AMPS-319

donaleen and Ozy said:
Given meter inaccuracy, I see no yellows.
Click to expand...
Take the numbers at face value. If I take your logic and reverse it, and say all the pinks are over by 20% due to meter variance, then the only "pink number" in the past three days would be the 374, minus 20% makes it a 300. The rest would be yellows.

I'm a "glass half full" kinda guy. ;-)
 
That's not what you said before when we were discussing meter variance before... then you said you laughed at people who took the readings at face value.

I think it comes down to whether you BELIEVE in the protocol. If you believe, you use arguments that support the protocol. I don't believe in the protocol. I think the protocol is a shaky foundation.
 
Then you misunderstood what I said before.

Either you trust the meter or you don't. But you can't use the variance to make them fit your logic. I think obsessing over whether a 200 is a 185 or a 225 is ridiculous, because you're going to do the same thing either way. If you see a 49, you reduce. You don't say "it might be a 55 or a 40." It's a 49. And you reduce.

You're trying to use meter inaccuracy to rationalize your disbelief in the protocol.
And not believing in bounces is pointless. They exist. They happen. We didn't make it up. It's an instinctive natural reaction to low blood sugar.

I used to doubt the protocol too. Then I watched dozens of cats go OTJ after following it, compared to very few that didn't follow it.

I don't really understand what it is you want, Donaleen. Other than for Ozy to get better. I've tried to help you, as have lots of other people. We can even "think outside the box" if that's what you want to hear. But the reality is that you haven't seen the protocol "fail" for Ozy or you. He hasn't been on it long enough for you to reach that conclusion. You don't want to accept "bouncing", you think the protocol, which has worked on hundreds if not thousands of cats is based on a "shaky foundation".

Well, I can't help you at this point. All I have is my understanding of things, and apparently you don't want to hear it. I'll just butt out, and when you find a better way, I'll bookmark your solution for future reference. I really wish the best for Ozy.
 
donaleen

The protocol isn't a shaky foundation. It works. It is THE only protocol for lantus/levemir based upon scientific research published in a veterinary journal. Think about this.....what are the options? Raising the dose 1u every few cycles? This is what vets do which gets cats overdosed. Until you stay up ALL night long with someone whose cat won't come out of the 20s (because a lantus overdose can last well over 16 hour), then you can't truly appreciate the danger inherent in increasing in large amounts. Yes, we increase in small doses but it's because you may easily bypass a good dose if you increase too much or too fast.

Other option? Start Low Go Slow Approach. It is not a protocol. And the dose increases are much, much slower; reductions are at a higher number. Do cats go into remission on it? Absolutely; it was, at one time, the only approach used by lantus/levemir cats. But now we have something much better.

When following the TR protocol, the rate of remission in cats which started it within 6 mos of dx is over 80%. Does this mean Ozy will go OTJ? Who knows? But this truly is his best chance.

Fact: diabetic cats are notoriously hard to regulate. Throw in health issues and you can compound the difficulty. BUT....they can be regulated and they CAN go into remission.

IMHO, I'm not sure if we've done a good job of helping you understand how this insulin works. If one does not understand how the insulin works, then one is fighting against it all the time. And that leads to more and more frustration. Bounces occur. Ozy is very, very bouncy. Sometimes his high numbers are bounces; sometimes they aren't. Sometimes, he just needs more insulin. I try hard to look at his SS and let you know when I think he needs an increase as opposed to when he is just bouncing. But you will need to accept the fact that he bounces and that you have to wait those out until you understand how the insulin works.

We are all about safety here and so we are going to recommend the safest road for you and Ozy. When you get to be very experienced, know his patterns inside and out, understand any risks you wish to take, then you hold the syringe and make the decisions. But we are here to help you and Ozy work the protocol safely and so we might be a little more conservative than you like (e.g. asking you to let the bounce clear before you increase the dose).

One thing that ALWAYS helped me, because I always had an itchy finger on the syringe and did not like to be patient (in other words, I HATED Gracie to be in yellow and pink numbers), was looking at SSs. I still study SSs ALOT...especially SSs of long-term diabetic cats with very experienced CGs. I know we've given you SSs and you feel they are just numbers, but I'd still like you to look at two more and I'll tell you what I'm trying to show you:

Max's SS. Max was insulin resistant. I don't think that Randi ever had him checked for IAA but he did not respond to the insulin until he got up to 5u, at which time he started getting into blue numbers. He even got into some green numbers at 5.75u. And he even earned a reduction and Randi took him back down per the protocol. Then he fizzled out and Randi had to keep going up in dose to 6u before he reached a breakthrough dose. Then it was a wild ride back down the dosing scale. I'm not sure what they recommended to Randi back then; but now when a kitty gets up around 6u, we recommend the caregiver start thinking about having them tested for IAA or acromegaly. But it amazes me how well the protocol worked for Max. And Randi was persistent and stuck with it.

Black Kitty's SS. BK was actually dx with IAA. Sandy, like Randi, was persistent with following the protocol. BK got into some blue and green numbers at lower doses (e.g. 6u bid!) but he ultimately had to go up to 13.5u bid and then Sandy had him up and down around that dose a bit before he finally broke through the IAA. He was on insulin about 20 mos but went OTJ...and remains there.

My point in all this is that Ozy has not reached his fitting dose. You have to be persistent like Randi and Sandy and just keep following the protocol. Is it possible that any day, he may reach it? YES! Is it possible he will have to have much more insulin before he does? YES! Is it possible he might remain a bouncy cat? YES! But you can learn to live with it just like those of us with bouncy cats have had to do.

One thing we used to tell LL CGs that I don't see us say so much any more but really summarizes it better than anything else: FD is a marathon, not a sprint. If Ozy needs more insulin, take him up per the protocol until he breaks through. Stick with it. Try to stop driving yourself crazy because it will consume you. And I feel justified in saying this to you because Gracie has not been easy to regulate and I've been where you are.

It is what it is.
 
Marje,

I am touched that you took the time and effort to write. Thank you. But I have an increasing sense of despair and frustration. I don't want to wait for the big giant head to tell me what to do. I want to do it. I feel stupid because none of this makes sense to me. I love data and I hate those SS that tell me nothing except that none of those cats were worse after three and a half months, like Ozy is.

It's bad enough being stuck dealing with this disease. It's worse feeling unable to respond without someone telling me when I should increase. I hate how that works.

I don't like the forum. It's not that I dislike anyone. I think there are many dedicated and caring people. But the protocol doesn't make sense to me. In my paranoid moments I think this is some weird religion or cult or maybe a group of researchers that has Ozy on the group W bench. I don't take things on faith. This does not make sense to me. All my warning bells are going off.

I don't even have the energy to argue or ask questions.
 
donaleen

You've written that he feels much better and he's more active (other than when he flares up). You see "worse" on his SS. I don't. I was hoping you would see in the SSs that it isn't a case of "worse". It's a case of needing more insulin and that persistence in following the protocol worked for two insulin resistant cats. And perhaps Ozy is insulin resistant or perhaps you might find he is a high dose cat. I hope not with all my heart and there is no indication of that now.

We aren't a cult. We have not brainwashed anyone. I am a biologist by education and profession and I question everything. When we started, Gracies condos were long and full of questions. You can read them and you will see how I questioned everything. Gracie would not be here today, lying beside me, sleek and soft, happy, a sweet wild child playful baby if it weren't for LL.

I am always willing to help you but I don't know how to get you past your paranoia. You don't have to wait for anyone to tell you to increase the dose. You hold the syringe. He's your cat. We are just trying to keep him safe because we have the experience to know what is safe and what falls out of the realm of safety.

There's nothing keeping you from trying whatever you want but you should realize the possible risks. Whether you continue to follow the protocol and post here (which I hope you will do), or you decide to do your own thing, I wish you and Ozy the best.
 
Thanks, Marje. I am not going to post condos every day. I am going to keep up my SS. I am going to follow the protocol as it makes sense to me. I am going to increase by .25 every 6 cycles until he comes down. I am not going to think about bounces. My plan is pretty simple.
 
Hi Donaleen,

I'm just going to add my 2 cents here, since you haven't asked :lol:

---- happens. To the best of us. to the faithful, the unfaithful, the rich, the poor. Is life fair? Ever?

I was married to a paranoid clinical psychologist, & I can be paranoid with the best of them, so I understand in part where you're coming from. And that you want Ozy well NOW & your best efforts haven't been able to accomplish that - yet.

Tigger has a rollercoaster ride with Lantus. I've gone crazy trying to get him regulated. It hasn't happened yet. ECID. ----- happens. Life's not fair. I've learned since his last illness to step back & realize that at this point regulation's not the most critical aspect for Tigger - his overall health & attitude is. AND - sometimes our best efforts - even if it's the right approach - don't work as fast as we want. Or don't work at all. There is a bell curve.

But - the TR protocol is the only study that I know of, so that makes me trust it more than the standard approach the vets who have 6 diabetic clients at most (not all cats, either) will prescribe.

I don't post every day either, my schedule doesn't allow for that, but I've been here long enough to see cats respond - some with shorter dx periods than Tigger, some longer. Some in worse shape starting out than Tigger. That's life. Not fair.

So - I take one day at a time. That's really all any of us has.

I know you want the best for Ozy, I hope your approach works, & I'm glad you're not giving up on us completely.
 
Interestingly, that is exactly what has helped me deal with FD....meditation. And I now chant when I do it. It's amazing.

I've never had high blood pressure but one day I took it and it was 115/80. I meditated for 15 mins, took it again and it was 90/60. I'm a believer.
 
I've been doing this for 10+ years. There's a ton of talks and meditations on the link I'm adding. I just put one on when I'm around the house, so Donaleen, you could to this when you're quilting, for example. And she's cool. ;-) I hope to visit and do a retreat one day.
 
I agree with Marje and Lara that you need an outlet for yourself when you do this FD dance. My outlet is rowing - nothing like hard exercise for me to calm my mind and get me into nature. I also hike/walk to get out and away. I've always preferred long distance activities to sprints. Make sure you schedule some time for you each week.

Nothing about FD is fair. I have a high dose kitty and I agree with Marje that Ozy's SS doesn't look like one right now. A recent study shows 5% of acromegalic cats are long haired, 10% are females and acrocats are 20% or less of the FD population of cats. I have a long haired female acrocat. I could figure out the odds but I don't bother. Instead, I accept what I've got and I'm doing what I can to get Neko better. We went for stereostatic radiation therapy to treat her tumor and I'm following the protocol. The internal medicine vet told me that the most important thing I can do for her is to manage her blood sugar. Neko is VERY bouncy. It took 4 months to get the blacks out of her SS, 15 months to get the reds out, now I'm working on the pinks. It's a long term project but I'm stubborn. Most important, Neko is feeling way better than she was when we first started. It's hard not to focus on the numbers, but it's equally important to focus on how the cat is feeling.

I wish you the best of luck. :YMHUG: I for one will be peeking in on Ozy's SS to see how he's doing.
 
I think you 've gotten some great information and suggestions.

Can you help us to understand what it is about the protocol that is causing brain freeze? If you're a numbers person, the TR protocol would, at least on the surface, seem to be a good fit for you.

One other thought is whether Ozy is still experiencing pancreatitis or if there's any other medical issue going on. Does he need a dental? Any source of infection or inflammation can cause numbers to run higher.
 
FIrst, thanks Marje and Lara and Wendy for suggestions on stress relief. The only meditation that has ever worked for me is this breathing one (link below).... the trick is realizing how stressed I am and doing something about it.

https://play.google.com/store/apps/details?id=com.breathing.zone&hl=en

Sienne suggested he might have an infection. I don't think so. Actually, he seems to feel pretty good despite his high numbers. He is more active when I give him bupe, which tells me that something must hurt (pancreatitis and arthritis are my top picks). Bupe side effects are lethargy and yet he is energized and alert from the bupe compared to before the bupe. I don't mean he becomes manic. I mean he wakes up and engages with us (sits on our laps, plays...all the 5 P's).

The high numbers are making Ozy ravenous but right now he has no other symptoms. I am stressed because I hate denying him food when he is hungry. But I don't want to raise his numbers higher by feeding him more and I also don't want him to gain weight. I am the one who is suffering from the high numbers right now, worrying about ketones and organ damage and acromegaly.

As to what I don't understand about the protocol, it's all about those bounces. Marje tells me Ozy is very bouncy (I don't see that). Waiting for the unseen bounces to clear then becomes impossible. So knowing when to increase becomes impossible. And waiting for the big giant head to tell me whether to increase is very stressful. I've tried being pro active and said early in the day I feel ready to increase. Then I am invariably told to wait until PMPS. But no one responds in time to tell me whether to increase. The window between PMPS and shot time is pretty small, isn't it? My practice is to test about 15 minutes before shot time. Then feed. Then shoot. I've looked and looked for information on how long the time between testing and shooting needs to be. Can't find anything that defines how much time. How long can that window be? And it doesn't help that email notification doesn't work. I drive myself crazy checking to see if I have an answer.

The other thing that stresses me about the forum is not feeling useful. When I can't read my own cat, how can I give anyone else advice? I feel like a leach. And I hate making a fuss all the time. Anyway, thanks for sticking with me.

donaleen
 
Hi Donaleen, good to see Ozy is visiting the yellow floor instead of the pink one today. I'll try to answer a couple of your questions. First, most people here test/feed/shoot in 15 minutes just as you do. You don't want to wait much longer or your test number may become invalid. I think if you were to post a +9 or +10 and ask about an increase, there would be enough data on that day's cycle to give advice. Plus there'd be more time for someone to see your post and answer.

As for how you can participate in the forums, take a look at the name of the group. These are the Insulin support groups, where the majority of people do not give dosing advice. When I started here, I was grateful to have people stop in and just say hello, provide support, and just hold my hand through everything, including the pity parties. Through them I learned to relax (a little) and knowing that others had been through the same emotions did help. Look for people who are new to FD. They are feeling overwhelmed and could use a visit.

Has the vet done any Xrays on Ozy to check for arthritis? Pain can definitely increase the BG. It's great the bupe is giving him some relief.
 
One of the things that was mentioned about Ozzy is that on top of his diabetes, he has pancreatitis. We know that certain things can affect blood sugar. Pain and inflammation are two of them, and they both accompany chronic pancreatitis, which often is a low-level, smoldering disease process (I've been dealing with this scenario for 3 years)

My point is that what could be frustrating about why the protocol doesn't make sense is that the whole thing is based on benchmarking the dose on the nadir. So when the nadir gets low enough to a certain point, a reduction is warranted, and if never quite low enough or goes over a certain point, an increase.

But... there could be something else interfering with what we are trying to measure. - In this case the pain and inflammation of ongoing pancreatitis could be keeping the #'s from ever going low enough to hit that low number guideline, or increasing the BG readings well over the high benchmark - even though no dose increase or decease of the insulin is actually required?

(In other words, to us, we assume as per the rationale of the protocol, that the blood sugar readings indicate that a dose adjustment is needed, but in actuality what is messing with the BG readings is another issue entirely. And that keeps us from getting a clear picture of what is going on)

This is why some of us could have no success with the protocol, even after many months of brief periods of stability.
 
hi donaleen!

you must have thought i'd fallen off the planet. my computer ac adaptor broke, my screen keeps going to the Blue Screen of Death, and my wifi keeps turing off. i've been inadvertently unplugged. just in the few minutes i've been writing this post, my screen has gone blank several times. argh. i'm typing as fast as i can.

i think you've gotten a lot of good advice today. i have a couple of thoughts.

one is i would take the meter numbers as they are. a person could go insane trying to compare meters, figure out 20% variance points, etc. if you take the same sample of blood on multiple meters, you'll have multiple numbers. what's important is the overall trend, not so much the individual number. i'd try to let go of even considering the meter variance issue.

i do think the protocol works. at this point, i'd follow the part that marje highlighted for you. if you're seeing nadirs under 300, increase by .25u. if you're seeing nadirs over 300, increase by .5u.

sometimes we just have to accept these things that we cannot change (sound familiar?) and this is something you can't change and can't control. for most every cat this is a marathon. there is just nothing in this that is easy at the beginning - and you still have a "newly diagnosed" cat. it WILL get easier. it gets easier to cope with it emotionally, you'll get more comfortable at making dosing decisions, it will start to make more sense. the whole thing really does get easier.

i also think you gave an answer to yourself above - you said he does better with the bupe. i gave punkin bupe for a few months, i think, twice a day. don't be afraid to use it if it helps him. trust yourself on this.

and in spite of feeling like you don't know what you're doing, in fact, you do. you've increased his dose like a pro the past couple of weeks following the protocol guidelines and his ss does look better in the past couple of days. you are getting the hang of it!!!!! you're doing your job by controlling the part that you can control. the rest . . . you can't control all of it.

as far as Ozy being hungry - have you tried boiling chicken breasts for him yet? it's basically no carbs and fairly low calorie, so you could give him some of that to help with the hunger.

i'm sending you a virtual hug through the computer. i wish it were easier. i will keep trying to monitor him and help you out. but i hope it helps you to know that you are in the boat with many others, who all are wishing the best for you and for Ozy. :YMHUG:
 
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