Renaming/re-energizing this forum?

I'd like honest opinions on this...

Do we really need this High Dose forum?

There are very, very few people that post here on a regular basis and dosing advice is given in the other ISGs (is this really even an ISG since there isn't a specific insulin used?).

This forum was created to give those of us with high dose kitties a place of our own... a safe place where we weren't constantly being told it was rebound, we were overdosing our cats, acromegaly is so rare that our cats just can't have it, we're going to kill our cats with the doses we give. At that time there weren't many of us... mostly me, Patti & Merlin(GA), Beth & Pickles(GA), Stephanie & Phoebe(GA), Lara & Paddy(GA) and some input from Dale Ann (with Snuggles(GA) ) and Theresa & Olivia(GA). How many people with acrocats even know who these ladies are? Do people even know there's a sister site created and dedicated to just acrocats? How many people know that our acrocats were once the topic of a Think Tank thread originally titled "Acrocats: Flavor of the Month?"

I know that I personally am not here very often at all any more. Why? Lots of reasons... I'm just burned out mostly and it doesn't feel like there's a need to be here. I've been trying to keep my acrocat happy and as healthy as possible for 3.5 years... and I can't ask for help with him because he isn't even a typical acrocat. And once he's gone... is there a reason to stay? Do people need or want advice from the "original" acrocat beans?

Patti has made an amazingly informative sticky with info and links about acromegaly... do we just keep that for people to read and do away with the rest?

So what is the purpose of this forum now? Is it time to let it go... a "changing of the guard" if you will?

I'd really like to hear people's opinions... but, please, do NOT turn this into an ISG war. That is not the point...ALL the insulin specific forums are needed. I just want to know if this forum that isn't insulin specific is also needed.

Thanks.

 

Re: Is this forum really needed?

As the "newbie" to this forum, I'm probably not the one to make a call here. I could only answer "yes" to two of your questions...yes, I know there is a separate "Acro" web site. And yes, advice from the "original Acrocat beans" is invaluable...but may not need to come from this particular forum.

I know that when I first heard the word "Acro" from Dr. Pierson, I was like "what's that...couldn't happen to our little girl". I then came into this forum and read every word on every sticky...VERY helpful and informative. Now it's six weeks later, and am doing other reading on Acros outside of the FDMB to supplement what I've learned here. To be honest, I do not have time to visit the FDMB too often. So, again, I'm not the one to make a call here.

I can tell you that the "sign up" spreadsheet was quite interesting. To see some of the details from other Acro mom's was helpful in it's own right -- especially the test scores and the individual comments regarding each cat's situation. And, because of this ss, I'm betting that if I did post on one of the ISG's, one of you would probably weigh in at some point. But, to be honest, we'll probably just continue to manage Bryce's diabetes and not dwell on the "acro" part until we have to (if that makes sense). We can't sit around and worry about it day in and day out...it is what it is, so we'll have to provide the highest quality of life that we can and see what happens.

Thank you for all you've done with this forum (whatever you decide).

 

Re: Is this forum really needed?

Hi Carolynn - long time no post!

The HD forum has been quiet for a few months -- I do check in nearly every day still to see if there are any new posts. Since most of the acromoms are using Lantus or Levemir, they are satisfied to post in Lantus land - and many have stronger (social) links there than here. I know I would have a hard time listing the 12 most recently diagnosed acrocats without paging through the HD and Lantus forums.

To some extent, we may no longer need a High Dose forum. But we do sometimes address "advanced techniques" that don't belong on Health or Community - though "R" bolus is handled in Lantus land. I don't know if anyone is using a sliding scale anymore - but with so many using the Ls -- maybe the SS is obsolete.

And maybe www.catacromegaly.com is enough - have to admit - I haven't been there in a few months (since I got a new computer) because I just haven't bookmarked it yet.

I "see" more acromoms on Facebook...

 

Re: Is this forum really needed?

i come here occasionally just out of solidarity, coz i don't have an acro cat.
we do see forum participation ebb and flow, for whatever reason, and just coz this particular forum is not busy now doesn't mean it won't be hopping later.

i guess originally more acro posters were on lantus because jojo was around to help more but now that she's hurting and can't be around as much it seems a shame they're not posting here just because there are tricky intricacies in dealing with feline acromegaly that other acro moms could help with, especially because it can be hard/frustrating to deal with a high dose cat with a sometimes inactive tumor versus all the low dosers and talk of rebound elsewhere on the board. haven't trolled the internet as much lately but i think the stickies here are probably among the most useful any acro mom could ever access, and i'd hate to see them put somewhere less prominent.

anyway, just wanted to say that i feel badly that some acro moms are feeling less valued on the board and want you to know how impressed with all of you i am. you handle such challenges with good humor, determination, and love that you put many pet owners to shame. please know many people on this board are cheering you on and glad you're here.

 

Re: Is this forum really needed?

I don't know if we need this section; I should say I don't know if this section is needed.
I think it's just a matter of not being used well enough. My first thought awhile back was "what IS a high dose?"
I don't even post condos anymore; I just can't do it anymore because I am tired and don't see the point in it. What's there to say to something like "I think this dose is not working so I am going up 2u to 22u lev, and hope the 7uR will help to keep Oliver's numbers down a bit" Seriously. Nobody says a thing about it. So why did I type it?
It just doesn't feel like it 'belongs' in amongst others who are fretting over a decision to stick with a .75u dose of shave a bit off. I can't relate to that, I just can't.
I think I would feel more likely to post in HD if I knew that others would going to do the same. Not all the acros or high doses, but just some of them. Nothing against the others, but it's just too different. And I am sure that others have felt the same or similar and have just wandered away till they just seldom return.

I don't know that I will ever return to daily posting of condos. One was tough but two is just impossible.

I'd like to hear what the others have to say.

 

Re: Is this forum really needed?

I think this is a good place to greet and support the new people, but it's sad that so few of the old people participate. I think it's good to have a place called "High Dose" so that when kitties just don't respond at the low doses, people have a place to look for help or the ISGs have a place to send them.

I'm not sure what it is with the high dosers, but they all seem to eventually disappear from the board or just make sporadic appearances. Do they not need support or do they not feel supported?

Even if this forum isn't used a lot, it doesn't hurt anything to keep it around. I know we have the cat-acro site, but that's barely used as well. I find it easier to just check this forum.

 

Re: Is this forum really needed?

My vote would be to keep it. I would definitely feel better posting amongst others who have been through similar experiences and can help me from firsthand knowledge as opposed to others in LL or other groups who have heard that ...
It's hard to get much interaction when the majority of people are at various stages of lesser doses or even trials for OTJ. And when you are working with a functioning pancreas as opposed to a limping one, the rules change a bit such as aiming for over 100 and not trying to get lower. Or how about going just below 100 and feeding a whole can of HC to bring your acro up, when others have been told to wait till 50 or something and they give only 1 or 2 tsp.

Yes, it's good to post in LL so that others can learn and be of more value and more knowledgeable, but it's still harder to get quick help if you are lost in the shuffle on the board. Is that making any sense?

I signed up with the cat-acro board but have never really gone there; I signed up as advised when receiving a positive dx.

Time could also be a factor for absence from the board as acro numbers just don't stay put very well; acros are more fluid in their numbers and seem to change according to their own internal status, not any rules in protocols and there's little in black and white to use so timely interaction with peers is needed to keep to safe actions. At times, it seems like almost every cycle is curve day. To keep updating your daily condo and the ss and all the other actions involved, it gets draining.

With fewer active entries in HD, i would not have to keep updating the subj line to move to the top of page, and also add a reply to state; instead, I can just put the date and cat name in the subj line. .. quicker too.

 

Re: Is this forum really needed?

Thanks for the input gals...

Chris: I'm betting that this place won't be hopping... ever. There has been a tremendous rise in confirmed acro/IAA kitties over the past year or so, and no one posts here regularly. This SHOULD be a very active forum because there are lots of acrocats, but if it hasn't happened yet, will it ever? I think there are several of us who have a lot to offer, besides dosing advice, but we aren't asked, so why bother?

Heather: As for do HD beans not need the support or not feel supported.... I'd say both. I have the only acrocat who goes on and off insulin so it's not like anyone can relate to that. And I'll say that for the most part, I don't feel supported. If I post because there's something wrong with Fletcher, of course people send prayers/white light/hugs/etc which is invaluable. But in the day to day scheme of things?... He's still a "freak" that no one wants to touch... and yes, after three and a half years, it still saddens me.

Maybe if people knew how hard it was to even be mildly accepted for having a kitty who gulps insulin instead of sipping it, things would be different... We tried to make a place (both here and the catacro site) where all the thirstier kitties and beans could gather for support, advice, discussions... but it seems that isn't what's wanted or needed. That's probably why most of us aren't around anymore... you can only try so hard for so long before you wake up and realize it's easier to just not fight anymore.

 

Re: Is this forum really needed?

So how about if we give it a try? I am game if some others are.

I don't know what others are doing, but I select the subscribe forum for this HD and when there is a posting I come over to see what's put.

I suppose it does not need to be as formal and daily like in LL, but it could be. I see where people are told that maybe they should ask over in HD since they have a high dose or dose that keeps rising, but then I guess people come over to HD and see not too much hoppin' over there and just come back to LL or eventually leave.

Maybe if the newly dx or high dosers sent over see that the group is actually alive and in use, maybe they will stick around a bit. I am willing to give it a try and see how it goes.

Just wondering here .... does the name have to remain as HIGH DOSE? What if it was altered to something like HIGH DOSE / ACRO / IAA / CUSHINGS. Then, maybe those who have been dx can see clearly what this group is all about, can come in and also see what it's all about.

 

Re: Is this forum really needed?

Carolynn, maybe if some of the HD folks posted more often here things would turn around. If I had a HD kitty and needed advice, I might be more prone to post on Lantus simply due to the amount of eyes on that forum. But if I knew this forum had folks willing and very able to answer my question, I'd want to post here.

I know that having a HD cat is challenging and unique in many ways, but over the years you know that my own cats were challenging and you and I spent hours brainstorming. Remember when Sadie needed 2U of R with each and every PZI shot, remember when she needed intramuscular PZI shots occasionally due to her heart condition and continuing issues with fluid on her lungs? This was not something I could find people related to on Board but it didn't stop me from sharing my experiences the few times others needed it.

Remember the hours we spent discussing Misty and how she could go 36+ hours on less than a quarter dose of PZI? Finally she was microdosed on Lev so tiny that I had to buy reading glasses.

You know Tucker's always been an enigma; his allergies, IBD, CP, brain tumor, pred, low potassium, and everything has made his dosing bizarre and it's very rare that I have asked for dosing advice with regards to him and when I have the advice was far and few between (although I will always be thankful to Carolyn and Spot who stayed up with me all night my first Lev night), however the support is here when he needs comfort or prayers.

The point to my FD cat stories is that different people take away experiences from this board differently.

Having a HD forum for folks, even if not used often, imo, is good. If it can have more eyes on it, even better. At this time if I see a cat that may need HD advice, I'm more inclined to PM some folks then steer them hear, although I do believe I have posted Patti's informational sticky to some over the years.

I realize that you don't come to the Board much, but try to remember when you first came here, remember how you felt, how you did not want to hometest but the day you did start hometesting was the day Fletcher went off insulin the first time, if I remember correctly. It is for moments like those that I personally will continue to post on Health and I'd hope that HD moms, maybe when thinking back to the beginning, might decide to start posting more.

All of you have been invaluable to this Board and the information learned from all of you will continue to be priceless, but I hope that all of you, might want to post on HD a few more times.

 

Re: Is this forum really needed?

I think its worth keeping. Since Willi passed in December I certainly check in less frequently but found this to be a great resource for me during Willi's last year of life. Perhaps the demise of the forum may yet come but not sure we are there yet.

 

Re: Is this forum really needed?

The HD forum definitely needs to stay. It serves a purpose that none of the other groups accomplish.

I personally would love to see it more active, and to get advice from the more experienced moms, and to have it be a social and support forum, but things would have to change to see that happen. It is a time commitment, and it seems most of those beans you listed are no longer active. I've been here 6 months and I don't recognize any of those names except Patti and Carolynn.

When I arrived here in January I received so much help and support. Carolyn, Carolynn, Patti, Phoebe, Heather and Jojo stick out in my memory from early posts,(sorry I know I've missed some other angels and I apologize) and all gave such good information. I miss seeing Patti around- she made everyone feel good. But, I think its fairly typical to lose interest once your kitty is regulated or GA, or some personal crisis takes your attention elsewhere.

Anyway, there will always be a new stream of kitties who need to hear about why some cats need more insulin. This is a useful resource to help them. Beans need this forum's help to get the moral support to insist on testing with their vet, they need advice and support that kitties can live long happy lives, and that it isn't a death sentence. (Cody's into his 4th year as a diabetic- obviously the acro's been going on a long time)

I recently (6 days ago) switched to Lev from Prozinc. There weren't any HD PZI moms who posted in PZI during the time I made that home. I tried posting in HD, but could easily go a day or 2 before anyone even viewed it (except maybe Heather or Phoebe-thanks) , so I stayed in PZI and tried to help the newbies there- even though our reality is pretty different. That was fine, but I really needed a place to get help for me occassionally, and the only place would have to be HD.

There is an ever increasing number of newbies coming in that are on Prozinc, and statistically 1/3 of them are going to be HD. Where do they belong if HD isn't here? Who will be around to help them?

And as for posting in LL, I know I am the new kid, but yesterday for example, I was talking to myself ( except Heather -thanks) Obviously folks have a hard time relating to my totally unorthadox ramp up of lev and starting dose of 7u, so there is very little value to them and potentially could be very dangerous to some newbie. Maybe I shouldn't be posting in LL.....

This is a marathon, and maybe a relay marathon, where people come and go, help when they can, and hand the batton to someone else as they are no longer interested in helping. Kitties lives are short given the ongoing need that exists here. Lets ALL try to visit more often to energize HD and lighten the load.

Well- it took me 2 days to think about my answer to this, but there it is. I will start cross posting today and see what happens.

 

Re: Is this forum really needed?

Just wanted to say that I have SO enjoyed reading the responses, and have already started visiting this site more often. Time is a problem (as it is with everyone), but it's important. I'm also getting to know more of the "names" here, and finding similarities with our "kids" (e.g., test scores, those on heart meds, etc.). BTW, adding "Acro" to the forum name may be a good idea.

So, I'M IN if you all decide to keep this going. Thank you!

 

Re: Is this forum really needed?

Enjoyed reading all the responses, and in a nut shell I think it should stay but as suggested change the name to "Acro/IAA/Cushings etc.

 

Re: Is this forum really needed?

I vote for keeping it. I know this is the High-Dose group ISG, but I think it is also an important venue for social support and a place where complex related medical issues can be discussed. I wish there had been a place for Earl and me when I was dealing with his brain tumor (and pituitary tumor) and other issues, I wish there any been anyone to talk to who had any of the same experiences. (I did get great general support from the main board, but didn't want to post frequently about specific things that weren't relevant to anyone else.) This forum doesn't have to be high-traffic (or even moderate-traffic) all the time in order to be useful. A lot of people check in, scan the posts, and don't post, like me, so traffic can't be measured just by posts. I think there are a lot of eyes on this board, and folks who are ready to step in with support or some with experience. Just my $.02.

 

Re: Is this forum really needed?

OK I have started things off with my mammoth of an update for both Shadoe and Ollie.

I had not realized how long it had been - my last entries were on 6/5 for both of them, and with these guys, things just don't stay the same for long.

I hope it can get a few other HD'ers to post just a bit more, even if it's sproadic or weekly or daily. If nothing else, it will feel good to know that there are others out there who are going through the same or similar issues.

 

Re: Is this forum really needed?

Maybe we should all try to post an update the first of every month? Even though Boo's not on insulin, her IGF-1 and GH levels are still in the high acro range and I think "things" may still be growing. At the very least, it would be good to keep up with all the kitties and while FB is an easy place to post, it doesn't help lurkers, people who think they may have a high dose kitty, and future HD kitties.

 

Re: Is this forum really needed?

I think that's a great idea, once a month or people could also do a weekly one if they like. It could be like the other Caturday reports.

I think it's good even if new posts are sporadic - have something happen or change, add a new post.

I really don't think I can stick to daily condos, just due to time but I think I could do weekly ones. Just a recap of the week, posted on say Sat morn or even Sun eve.

I always felt guilty if I could not start a condo or planned to post after work then did not have the time.

For those not posting regularly, I bet there are some things that could be shared, to inform others or even to learn that you are experiencing similar changes and find resolutions and novel approaches.

As for the lurkers, it may just help them determine if they have a HD kitty or know of one.

 

Re: Is this forum really needed?

OK, so it sounds like a name change is in order? I'll PM Rebecca.

I like the weekly update idea... it allows us to keep up with each other without getting overwhelming.

dancing_cat

 

Re: Is this forum really needed?

That's great news! The HIGH DOSE is a good name but then it gets muddy when you are not sure about what's a high dose. With Acro and IAA and Cushings in the title, people who have had others mention to test for the conditions may come in and ask what are they all about.

Great question, this topic. I think it got some of the HD people thinking about it.

 

Re: Is this forum really needed?

Hi Everyone! I am late to the party but wanted to add my 2 cents.

I am glad to see this forum will continue. I agree that even though there hasn't been a lot of posting activity in the past, I am sure it is read regularly.

I am guilty of not posting for which I feel bad but I just don't have the time. I am sorry about that but I will try to stop by a little more often in the future.

 

Re: Is this forum really needed?

i vote to keep this area.as much as i dont post alot.i still feel this area has its value.keep it

 

Re: Is this forum really needed?

How about something indicating Insulin Resistance Conditions?

 

Re: Is this forum really needed?

I suggested Acromegaly/Cushings/IAA. Does that sound ok?

 

Re: Is this forum really needed?

I prefer the Acro/cushings/IAA

Also -- could you edit the SUBJECT of the topic? To something more Generic like "Renaming HIGH DOSE?" or something less off-putting to newbies

One gal has already backed out of the ISG to HEALTH because of THIS THREAD.

 

Really? Who left and maybe we can explain what this discussion means.

 

sseeley - Stephanie -- and I did post an explanation in the thread

viewtopic.php?f=28&t=17761

 

I hope you keep this forum.

Recently, I came here to learn as much as I could -- so that I would be able to help my friend Lanky better. I've spent several hours reading your threads, studying SSs, the stickies, etc. I look forward to coming here to study. I am usually in LL.

I am sentimental about this forum. On 11/27/09 I came to FDMB to help my Noisy. We poked around until we saw "High Dose," and I thought oh, that is where I need to go. (Vet had Noisy on 11u BID and wanted to go to 13u BID, no BG testing. Noisy was not an acrocat.) This was the first place I ever posted. Quickly someone came along and saw I was in the wrong place and escorted me over to health. I'd like to go and see who that was -- maybe you are still here.