[CarlyesHope]

I have to post this quick before I fall asleep.. ..

Carlye had her first visit to the Endo today since being diagnosed. She also had her first A1c - - - - - - - 5.8

Suprisingly, the doctor didn't like it, he said it was too low....I'm so confused I thought the lower the better, he said nope it means she getting too much insulin (at least i think that's what he said)

He said we are doing an excellent job controlling her diabetes, that her numbers are excellent with the exception of a about 9 lows (between 70 and 44) in the past 6 weeks.

Carlye big time argued that she like the lows better than she liked the highs and was going to keep trying for lower vs higher numbers. the doc kept trying to explain why they are bad and she kept instisting the highs were worse - Ugh, she wouldn't let up, he finally said I would have to get it thru her at home, that it was very important that she understood that too many lows were bad. So I tried to discuss it on the way home, an the little snot said "what does he know, he doesn't have diabetes" "I know how I feel when I'm high, and I know how I feel when I'm low and I'd rather be low" so now were home and she is not speaking to me - darn!! she said she read on here that all you guys had much lower lows and your all fine... I told her she needed to find the thread that had the scary stories in it and read all of those...can anyone point me to them? they were up around late March, because it was one of the first few things I had read and was so nervous about lows i though I wouldn't survive diabetes....

We asked for the pump, he said no, I argued and won, but his argument against were valid and now i'm not so sure - - Women....

I also asked about the sugar free stuff that I posted before, and you guys were right, she does not have to have sugar free stuff - except for pure sugars like syrup, honey, jelly - and boy is she excited... although now she thinks its free reign to eat tons of it and she was debating with the Dietitian about that too - - why much children argue, do they really think we know nothing??

So that's it, the quick and i'm sleepy version of Carlye's first Endo visit..

[duck]

Okay, lows are not exactly "fine", though I do understand where Carlye is coming from when she says she prefers lows to highs. However, lows can kill you very fast...I bet if we took a survey here of the members who ended up in the ER because of diabetes, if it was because they were high or low, low would win by a long shot.

Okay, having said that, the A1c is great, the doc has to lighten up. Mine from two nights ago was 6.4, so maybe Carlye and I can compare notes on how to keep good A1c's without having additional lows. That's a tightrope to walk, but I think we can do it.

(someone smack me if I am too harsh about lows potentially being deadly)...

[twocute64001]

QUICK HIRE A TEENAGER WHILE THEY KNOW EVERYTHING!!!

Lows are a problem if there are too many too close together. She risks diabetic shock and Seizures, but I do understand what she means about feeling better when low than when high.

When I am high I feel achey, like I have the flu, I want to sleep, my arms are weak and heavy, I can not consentrate or think properly.

Low, I am hypER, I want to keep moving, until I get real low, then I get hot and shakey and finally I get hungry, I have never had a really severe low (below 40) but do know convulsions, Seizures, and unconsiousness can happen.

I also know that I was taught that when high, we burn brain cells as well as if too high, we damage organs such as kidneys, liver and heart. I am not sure if low causes the same types damage, but am sure someone on this board will know.

Sorry mom, but Carlye is at the age that NO one can tell her anything. You might try diabetes camp where she can experience other teens with the same issues and learn from them. It helps a lot of kids cope.

[HeatherP]

If Carlye weren't having lows then that A1c would be fine. Since she is having lows then she needs to raise it a bit. My docs don't want to see mine below 6% as a rule.

Not that I would suggest trying it, but I think that one good go-round of a low where she was incoherent, unable to communicate, and had seizures or passed out would probably cure her of the preference for them.

Lows are dangerous besides from the above paragraph because the brain uses glucose for energy. When there isn't enough sugar brain cells can die off. A low every now and again won't hurt, but having them on a regular basis will take it's toll on her cognitive abilities. I have also read some stuff on how lows can take a toll on the rest of the body as well, not just the brain.

I think a Diabetes camp of some sort is a great suggestion.

[Cinnabon]

Nice job Carlye...

Oh boy don't I know about these lil people thinking they know it all! LOL
I'm glad you won the pump debate, I don't understand why a doctor would not allow you to have the pump for her , its like adding life for Carlye.

Congrats!~~~~~

[am1977]

Well... first off congratulations! I think 5.8 is a really GOOD A1c (geesh, all these people with such great a1c's..guess I'm going to have to work even harder ). But I do agree :dito: that is she's having a lot of lows, you want to be careful . I think reducing her insulin doses just a little may be the way to go...besides, who wants to be on more insulin than you really need? Plus, remind Carlye that reducing her insulin doesn't mean that she will have hi after hi. It just means that she will probably have more "normal" readings instead of dropping low.

Great job again!

[Mick]

It took me a long time to accept the very real dangers of LOW blood sugars. Although an a1c of 5.8 sounds great, it generally comes with accompanying lows. Now I know that we are frightened of complications, which come from HIGHS, and so it would SEEM that "The lower the better", but this is an extremely faulty viewpoint. I'd like to submit for your examination a letter from a woman on another board I post to. It is a chilling reminder of the very real dangers of Carlye's attitude. Here it is:

"Hello. My name is Karen and I really need some help. I feel like I have been put out in a field with no one else around. i was diagnosed with Type 1 diabetes when I was 10 years old (1971). I am now 44 years old and diabetes is no stranger to me. I have had very few complications. Don't get me wrong I have had a few. The big one was a heart attack in 2001. It was mild but it was a heart attack still the same. In October of 2001 I fell in my home (due to a low blood sugar) and separated my foot from my ankle (this story is one for later). to my now problem.

In February of 2003 I was in a car wreck (also due to a low sugar) and now have a spinal cord injury. I can't be the only diabetic in the world with a spinal cord injury. I know that there are a lot of Type 2's out there that became that way because of being in a wheelchair. I have been trying to find someone else that is also in my unique situation. I haven't been able to find anyone. I still have the same problems that are associated with the diabetes. I had to teach the nurses in my spinal cord rehabilitation hospital how to take care of me. They said that I knew more about the disease than they did. the fact of the matter was I knew more about MY diabetes than they did. I am paralyzed from just below my breast down. I basically do all the same things I did before. I just had to find new ways to do them. The only thing I don't do is drive. It is really hard to keep diabetes in check when you can't exercise.

I guess I just basically want someone to tell me how this situation has affected them and how they have learned to cope with things. My blood sugars are great and my last A1C was a 5.9. I don't mind talking to anyone about my situation or answering questions. I would like to hear from people and especially from someone who is also in my situation."

Need I comment further? I know that if I showed up with an a1c under 6, my endo would freak out. Rightfully so. It is not a safe place for us to live 24/7, both in terms of brain damage (including memory loss, learning difficulties, difficulty concentrating, etc.) and in terms of dangerous behaviors--I myself have had one car wreck, one fall down a flight of stairs, several wandering off and getting lost (in my own neighborhood...), and multiple bumps, bruises and lacerations from unawareness of my surroundings and uncoordination. It IS indeed a very very fine line we walk, that safe and healthy range between low and high. But always remember this: One high reading will do absolutely no harm. One low CAN kill you, or, as with Karen above, paralyze you for life. Don't forget that. Please...

Stay safe AND healthy,
* Michael

[gettingby]

Originally Posted by duck

Okay, lows are not exactly "fine", though I do understand where Carlye is coming from when she says she prefers lows to highs. However, lows can kill you very fast...I bet if we took a survey here of the members who ended up in the ER because of diabetes, if it was because they were high or low, low would win by a long shot.

Okay, having said that, the A1c is great, the doc has to lighten up. Mine from two nights ago was 6.4, so maybe Carlye and I can compare notes on how to keep good A1c's without having additional lows. That's a tightrope to walk, but I think we can do it.

(someone smack me if I am too harsh about lows potentially being deadly)...

Even though I have to pass up the chance to smack Duck :****mate: , I have to agree with him. Low's can be VERY DEADLY !!!!!!!
My lowest has been 17 and I wouldn't wish that on my worst enemy. Kelly, you have to lay down the law to Carlye before it's too late.

[Eri's mom]

That's great ...the A1c...at least not high like Eri's last 9.6!!!
Eri's target range is 7%...the lows are very scary...I've seen Eri lost and confused, in shock, MANY seizures and semicomatose.(that's when she was 19)...I think the hardest thing for me w/ the seizures was when she was coming out of most of them...was when she would be able to focus on me, lying on her side, teeth gritted, and would have tears falling down her face saying "Mommy, please. make.it.stop.it.hurts.PLEASE!!!"...ugh...talk about heartwrenching. It was to the point where Elle or Wil would come out and say, "she's doing that shakey dance"...and that would be w/ her just sitting in her room doing homework, listening to music or on the computer or watching tv.
Lows are horrible...and she says the highs are worse, but believe me, she does NOT EVER want to go through a seizure...or shock...again.

[CarlyesHope]

I am so confuzed my mom is mad at me because, well i think she is because i would rather have lows then highs. You guys say u have had below 40 right? Well then compared to you 63,67, and 69 arent that bad right? And also my mom keeps saying "well thats them not u" well yah, so my lows may not affect me as bad as she thinks. I apperciate that when i am low she "treats me" and makes sure i am breathing at night but having a 88 or 67 low and then takin 1 less unit wont make me go even lower. And earlier when my mom said i like lows then highs i mean lows like 94,88,79 these arent bad or really low numbers.Anyway if u guys have some more High and Low horror stories or advice I would love to hear it!!
Laugh All Day!!
Carlye

[mg_2204]

... Now I'm all confused about what the best numbers should be for an A1C. If you could choose your numbers, what would you like them to be for an A1C? One doc said to me I want your A1C to be 5 before surgery... and my usual doc said whoa!! No way. Be PROUD of your 6.2. Enough to confuse my little brain here

Also confused about numbers of non-diabetic people. Aren't they LOW all the time??! Doesn't seem to affect their brain. Need more info on that.

On a very personal note, I hate lows. And I hate highs! Came back from work yesterday at 4.3 mmol/L (78 mg/dl) and almost crawled home. I walk to and from work you see. And I was so hungry! Highs make me feel sluggish and extremely moody, and also sleepy. Best levels for me to be at are between 6 and 7 mmol/L (110 - 127 mg/dl). Very hard to stay within that range at all times...

[nantomsuethom]

i mean lows like 94,88,79 these arent bad or really low numbers

These are numbers I would love to see Thomas have (and an A1c of 5.8 - 6.0). If he starts to go below 95 he feels like he has to eat something! He prefers his bg to be around 130ish.
When he is below 70 his eyes start to blur and he gets very emotional and shakey.
Carlyes' dr. must think her A1c will go even lower if she starts pumping.

[CarlyesHope]

In all honesty, I don't think Carlye has had that many lows, and I didn't think they were that low (with a few exceptions). The doctor told us that he doesn't want her below 70 because then her body would get used to it. once it got used to 70 it she wouldn't feel it, then she wouldn't feel 60's and so forth, pretty soon, if she kept up the lows, she would have little or no indication that she was in serious trouble - he wants to assure that she always feels a 70 a 60 a 50, and that I can understand.

Between July 16 and present day she has had the following lows:
June 17 Bedtime snack 67, bedtime 53
June 20 Lunch 67, Bedtime snack 63
June 22 Lunch 68
June 23 Lunch 70

July 2 Bedtime snack 63
July 3 dinner 66
July 5 Bedtime snack 44
July 6 Bedtime snack 62
July 7 Bedtime 63
July 8 Lunch 45
July 11 Diner 67
July 13 Bedtime snack 53 (after he changed the ratios)

the docs changed her correction from 50 to 60
Changed bfast from 15:1 to 20:1
changed dinner back to 15:1 from 12:1 - which they just changed mid june
and changed bedtime snack from 15:1 to 25:1

Carlye is right in the aspect, that I don't have it, I don't know how it feels, but I can't get her to understand just how dangerous the lows are, she was off the charts high for at least 3 weeks prior to diagnosis and she was just fine (not sleepy, not cranky) just hungry but she feels if she is too high she'll go into a coma..?

As far as the pump goes, because her control was so good, he wanted to keep her there for as long as possible, he said the reason for the pump is better control, then more freedom but first for better control and if she has great control right now, why mess with it. I basically gave him the argument that school was an issue, that she missed 10 minutes of this class and 10 minutes of that class before and after lunch because of testing and giving insulin, and then this caused stress because her grades went from a's to a-'s or b's and the teachers worried and wanted her to come in during lunch which caused more stress and then this in turn affected her numbers thus defeating the purpose so, a pump would aleviate the need to leave classes 10 minutes early. He finally conceeded, but doesn't like the idea of putting her on the pump, he thinks her control will not be as good.

Please give Carlye some more stories of lows, she needs to hear it from you guys that perhaps the lows aren't the way to be.

Kelly

[duck]

Originally Posted by CarlyesHope

I am so confuzed my mom is mad at me because, well i think she is because i would rather have lows then highs. You guys say u have had below 40 right? Well then compared to you 63,67, and 69 arent that bad right? And also my mom keeps saying "well thats them not u" well yah, so my lows may not affect me as bad as she thinks. I apperciate that when i am low she "treats me" and makes sure i am breathing at night but having a 88 or 67 low and then takin 1 less unit wont make me go even lower. And earlier when my mom said i like lows then highs i mean lows like 94,88,79 these arent bad or really low numbers.Anyway if u guys have some more High and Low horror stories or advice I would love to hear it!!
Laugh All Day!!
Carlye

I need to make sure you understand that we aren't bragging about lows, we're discussing that we've had them and kinda laff at them, much in the same way we laugh at other scary occurences in life. In all honesty they are not "good" things. My endo tried to scare me off the pump with a story about a lady who started a pump, and she hadn't dialed in her basal rates yet and decided one afternoon she was tired and took a nap...Her husband didn't think anything of it until hours later when he couldn't revive her. According to the endo, the paramedics revived her but she had been low so long she had mild brain damage (finger prick from the paramedics showed 40's) and from what they can tell, she was in the 40's for almost six hours...

Do I completely believe that story? Not 100%, but I know for a fact that when I am low for a long (couple hours) time, I get pretty weird. It's not too much of a stretch in my mind that a little lower and a little longer could cause damage, especially since all our brains feed off of is Oxygen and glucose--deprive your brain of Oxygen and you're in deep doo-doo.

So, whereas I agree with you that being low is "better" feeling than being high, it is dangerous. You'll be driving soon, and if you drive when you are low you are a danger to yourself and others, and as far as I am concerned should be locked up. Also, being low impairs your judgment and I can see why your mom would worry--I'd worry too, and I know what you're going through. There's a happy medium that we need to establish, and that's the hard part Carlye.

Personally, I think you and your mom are doing a fabulous job--you should have seen me four months into this thing--I was an idiot and I can't believe I am not dead. And your mom is going to worry because she cares--I'll venture a guess that you are the most important thing in the world to her, which can be both a blessing and a burden to you. Hang in there, for a four-month old diabetic you are doing really well, let's just try and find that "happy medium" sooner than later!

[duck]

Kelly/Carlye,

You can go into a coma from being too low as well. This disease is a ball of joy, no?