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I am not a regular poster to this board, but my 15 year old daughter was just diagnosed with Type I. Obviously this has been a shocking and worrisome time for our family, but she is now home from the hospital and seems to be adjusting well to the carb-counting and self-injection.

My question concerns the school. She attends a public high school and has been out for the last few days. I will probably keep her at home the rest of the week until we are very comfortable with the routine. In the preliminary conversations with the school nurse, they got all excited about 504 Accomodation paperwork and want me to fill out a bunch of forms.

I am extremely reluctant to give the bureaucrats anymore than is legally required, but since she will have to carry insulin and needles with her I guess I need to work with them. One of the papers they wanted me to sign was grant access to her medical records, which I definately do not want to sign.

Any advice about how to deal with the school would be much appreciated.

Thanks
IC
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Good evening!
Our diabetic daughter is 2, so the whole school angle is something we have yet to tackle. I'm sorry I can't help you directly.

However, I do work in a hospital and have HIPPA regs burned into my skull annually by people who have no sense of humor. Remember that the general rule about HIPPA compliance is "minimum necessary to do your job." I would think that the school nurse knows what information is needed in order to do the school nursing job. There's probably a thick regulation book about it on some shelf gathering dust right this very moment.

If I were going through this myself, I would ask the nurse which records are needed and request and supply them myself, rather than sign over her entire medical history.

Best wishes!
Randy

P.S. Do you have a Pink Panther book? It's a must have. These are the Amazon links so you can see which books I'm talking about.
http://tinyurl.com/3flzbs (Thin version)
http://tinyurl.com/5q2l9y (Thick version)
I'll leave the low-carb preaching to others...
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I'll leave the low-carb preaching to others...

kaellner?
low carb is definitely the key.
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unfortunately, welcome to the board. i will be replying more, but time is limited now. first of all, be wary of advice from anyone, yea that means even me, but take a lot of advice from everyone and sift through it. most people on this board are very well meaning, some have bigger agendas, and some are more compliant with a good regime than others than others - i glean that from reading over time. i will respond to some specifics now.


'My question concerns the school. She attends a public high school and has been out for the last few days. I will probably keep her at home the rest of the week until we are very comfortable with the routine. In the preliminary conversations with the school nurse, they got all excited about 504 Accomodation paperwork and want me to fill out a bunch of forms.'

i have no experience with the '504 acommodation' but i agree with your instincts regarding information and bureaucrats. the fact is, if you educate yourself, there is no real reason your daughter needs to take syringes to school. this will mean she has a low carb intake at her lunch time, but i am not a low carb fanatic, she can get carbs when she's at home and has the insulin. it also requires that she is on an insulin regime that uses a fast acting insulin, and a very slow 'basal' insulin (or a pump). there are old regimes with intermediate acting insulins that sort of required you to take carbs at a certain time (lunch), and have some additional insulin maybe. your daughter might even be on such a regime now, as a starter, but she should ultimately switch to one like the above, or a pump. a good doctor will advise you about all of this, and if they don't, get another doctor.

unfortunately, the cat is sort of out of the bag - you've talked to the nurse, so given this knowledge they may be able to compel you to do something. what your daughter needs is for her teachers to know, in confidence, and some friends so they can watch for signs of hypoglycemia, that is the only potentially, but not in most cases, emergency event. and your daughter needs to carry a source of sugar. that's all she really needs at school.

two things, 1. the summer is near and your daughter will then have time to sort out how her body responds to insulin combined with various situations - rest, activity, etc.. with knowledge she can be pretty independent and no one, almost, will need to know her condition.
2. the future is still bright for her, for this type of diabetes, knowledge is great power. my 17 yr old daughter plays very competitive soccer, one of the best players on her team is type 1. she's got a pump, and occasionally sits out to suck up some carbs, but she does fine. there are lots of people walking around with this disease who never get all the nightmare conditions associated with it that are due to lack of glucose control. they follow "tight control". it's possible, it's harder when you are a teenager, but she can do it.
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ok, i just started googling a little about 504....

i read the below, and my first, gut, reaction is ....disability??????

your daughter doesn't have a disability, she has a manageable personal health issue. having her declared a disability is going to have a lot of consequences down the line. tell them to back off, tell them the initial diagnosis may not be correct...tell them you will deal with it.
i know i am sounding a little crazy here, but there is no way if it were one of my kids would i let them start a file on her.

just have a meeting with her gym teacher and tell her/him that your daughter is occasionally excused from participation on her own say so (due to hypoglycemia - and then explain what that is, and that she may need to consume 1/3 - 1/2 of a 12 oz soft drink).

she doesn't need any special program.

after an initial time period for adjustment to the insulin regime, and experiencing and recognizing hypoglycemia, she is going to be totally independent!!!! of course you will always worry about her, but she is going to get on top of this.




504
"It is a plan designed to accommodate the unique needs of an individual with a disability, as required by the American with Disabilities Act (ADA).

Section 504 of the Rehabilitation Act of 1973 is the first civil rights law guaranteeing equal opportunity for more than 35 million Americans with disabilities.

Children who have disabilities, but whose disabilities do not interfere with their ability to progress in general education are not eligible for special education services, may be entitled to a 504 Accommodation Plan.

School districts must ensure that students with disabilities have meaning full opportunities to participate in all aspects of school on an equal basis with students without disabilities.

Depending upon the student's individual needs, a school district may be required to provide the following: specialized instruction, modifications to the curriculum, accommodations in non-academic and extra curricular activities, adaptive equipment or assistive technology devices, an aide, assistance with health related needs, school transportation, or other related services and accommodations. "



in
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Again, I've found kaellner's advice very useful when it comes to glucose level management. By following his suggestion to read and adopt the guidelines of Dr. Bernstein, I reduced my a1c from 14.2 to 5.4
He kind of saved my life, not to be dramatic about it.
So, perhaps take his advice with fewer grains of salt than that of others!
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i read the below, and my first, gut, reaction is ....disability??????

Just a note on the above.....the ADA does cover diabetes and has certain protection for issues with diabetes. If your daughter is fully functional (which she should be) 504 is not needed.

http://www.eeoc.gov/facts/diabetes.html

In the case of your daughter, I would not keep it a secret (your daughter will notice and will try to keep it a secret herself). Keeping it a secret could have some unpleasant consequences if she has a severe reaction (very possible in a new type I).

Do not fight the school, there may be consequences that you haven't predicted. If you don't want to do something they suggest....tell them nicely and have a good reason.

Back when I was 10 and was diagnosed.....you didn't need to tell anyone anything. These days, there is a lot more knowledge and there may be low carb meals available or who knows what....if you fill out the right paperwork.
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Again, I've found kaellner's advice very useful when it comes to glucose level management. By following his suggestion to read and adopt the guidelines of Dr. Bernstein, I reduced my a1c from 14.2 to 5.4
He kind of saved my life, not to be dramatic about it.
So, perhaps take his advice with fewer grains of salt than that of others!


kaellner's advice on keeping carbs low can't be argued with.

His advice at keeping blood sugars lower then the average non-diabetic....is another story IMO.

Getting a teenager to follow a super restrictive diet (kaellner type) will probably not be very effective (getting a teenager to do anything can be a challenge). If you have a teenager that follows all rules etc.....you may have the exception. Find something that works and keeps her in control and stick with it.

I had a strict regiment that required me to wake up at a certain time and eat at a certain time....back in the day. I'd oversleep or sleep during the day causing havoc with my sugars. I adjusted my own insulin injection times and eating times (as a 10+ year old kid) to work with my unusual schedule. Find something that works for your teenager...whether it's the pump or whatever and stick with it.
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"In the case of your daughter, I would not keep it a secret (your daughter will notice and will try to keep it a secret herself). Keeping it a secret could have some unpleasant consequences if she has a severe reaction (very possible in a new type I)."

sorry if my post seemed to imply that i thought it should be a 'secret'. i just meant that if it really comes down to it, it could be. i am trying to counter the fear and distractedness that comes with one's first encounter with this disease. as i said in some post, friends and teachers should know, but the simple act of checking one's blood sugar, the only thing she actually needs to do at school, should really not become a major administrative concern requiring forms and certainly not permission. i just feel that the whole act of giving in to the really pointless demands of a lot of bureaucrats, , when these individuals have little to offer in this specific case, is fundamentally wrong headed
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sorry if my post seemed to imply that i thought it should be a 'secret'. i just meant that if it really comes down to it, it could be. i am trying to counter the fear and distractedness that comes with one's first encounter with this disease. as i said in some post, friends and teachers should know, but the simple act of checking one's blood sugar, the only thing she actually needs to do at school, should really not become a major administrative concern requiring forms and certainly not permission. i just feel that the whole act of giving in to the really pointless demands of a lot of bureaucrats, , when these individuals have little to offer in this specific case, is fundamentally wrong headed

If you wish to follow a strict control regiment, then shots before meals should be a requirements. In addition, since teenagers have unique schedules, the ability to take a shot when needed can be helpful (forget to eat and reaction hits).

I'm just posting that every person is different.....and you need to make adjustments to specific needs. It will take time till the OP's teenager gets a schedule etc that meets her needs.

Be glad she didn't get this disease back when I did......Uncle Ben's rice was on the recommended food list.
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bruce, i'm not catching the nuances of what you are saying, the words mostly seem to emphasize what we appear to agree on, things can be very flexible, if you know enough, and you can still be under tight control. best
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bruce, i'm not catching the nuances of what you are saying, the words mostly seem to emphasize what we appear to agree on, things can be very flexible, if you know enough, and you can still be under tight control. best

I just mainly replied to the "only have to test sugar" part of your post. Multiple shots I believe should be a requirement of any Type I regiment these days (or pump in my case).
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"I just mainly replied to the "only have to test sugar" part of your post. Multiple shots I believe should be a requirement of any Type I regiment these days"

that's right, and wrong. as in my first post, if you are on injectables then you have one very slow acting "basal" insulin like levemir, which you should stick two times a day. that's the "right" part, 2 = "multiple".

the "wrong part" was a possibly implied contention that you must do an injection mid-day, to wit: you also have a fast-acting insulin, like humalog (lys-pro), needed for when you eat carbs. you are only going to inject that if you eat carbs. so, if she doesn't eat carbs for lunch, she doesn't need to inject while at school.

the two slow acting injections can be done before school and in the evening. in fact, if she did not eat any carbs all day, and her blood sugars are fine, she need not do any injections of the fast acting insulin all day long.

i hope this is clear.
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in fact, if she did not eat any carbs all day, and her blood sugars are fine, she need not do any injections of the fast acting insulin all day long.

i hope this is clear.


It is clearly wrong as protein causes a blood sugar rise.
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"It is clearly wrong as protein causes a blood sugar rise."

it may, especially if the meat is high in glycogen, but it is generally very minimal. of course, as we all know, minimal depends on the individual, but i personally have had many steak and salad/veggie meals with no rise in blood glucose. it depends on your fitness level as well, if your muscle tone is pretty good and you are active, you are always burning some carbs so this may offset rises.
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it may, especially if the meat is high in glycogen, but it is generally very minimal.

You could eat a handful of rocks and your blood sugar will go up. This is called the "Chinese Restaurant effect". It is caused when food distends your gut which causes the liver to release glucose in anticipation of digestion. This is one way protein causes blood sugar to rise.

Protein does not contain glycogen. Protein is converted to glucose by the liver. This is why carbs are not essential in human diets because our brain likes to operate on carbs. The conversion takes a while but if you ate a lot of protein at dinner and go to bed with a normal sugar, you will likely wake up with a high sugar because the conversion happened throughtout the night. This is a second way protein causes blood sugar to rise.

When protein is combined with carbs and fats, the resulting blood sugar increase is not simply additive, but multiplied. It is the liver responding to what you ate and the disgestion that is going to be needed.

Your type 2 experience is evidently not severe enough were you have to learn the complete picture. Many people are not so lucky.
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Thank you all for taking to time to offer your advice. I found that having multiple points of view is very useful to good decision making.

We have a meeting with the school on Monday. I negotiate contracts in my professional life, so I'm not worried about being bullied into agreeing to anything that I don't think is in my daughter's best interests. I don't mind re-writing any documents they want me to sign with exactly the terms I want in there.

I also appreciate that everyone in the family is very new to this and it's going to take a while to figure out what works for us. DD seems to be coping admireably well and is open with friends and family. She only mentions once in a while that she's tired of only talking about her health issues all the time, so I'm trying to be sensitive about that.

Thanks again, looking forward to getting the know some of the folks on this board.

IC
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K, this is way out of line factually and in it's tone. i will go step by step.

"You could eat a handful of rocks and your blood sugar will go up. This is called the "Chinese Restaurant effect".

never experienced this effect, perhaps, as alluded to, because these are small amounts of glucose, if it is true at all, and the fit individual (me) can absorb small spurts like this.

"causes the liver to release glucose in anticipation of digestion".

liver never releases glucose in anticipation of digestion. blood glucose is detected by the pancrease and the appropriate hormonal response is effected. in the normal individual insulin is released as blood sugar rises. if blood sugar is low, glucagon is released causing, among other things, the liver to release glucose.

"Protein does not contain glycogen."

patently false - 1-2% by weight. consult any biochemistry textbook, preferably one at the university level. since i teach the course at the university level, i can lend you one if you wish. liver(10% by weight), of course is main organ for storage of glycogen, but it is there in your muscle so you can do work on demand, with energy from the anaerobic glycolytic cycle - from glucose obtained from muscle glycogen.

"Protein is converted to glucose by the liver.
yep

"This is why carbs are not essential in human diets because our brain likes to operate on carbs."
yep, and ketones derived from amino acids from proteins. in the fasting state, the brain mostly uses ketones.


"The conversion takes a while but if you ate a lot of protein at dinner and go to bed with a normal sugar, you will likely wake up with a high sugar because the conversion happened throughout the night"

nope, not for that reason. in the fed state, the liver will convert some types of amino acids to glucose, and in that fed state, it will store it away in the liver as glycogen. i think you are confused with the 'dawn effect', the result of hormonal alterations in the diurnal cycle necessitated by needing to wake up. diabetics don't have the insulin to meet the surge of glucose from the liver, and can, if their basal insulin kinetics are not matched, experience hi morning glucose.

"When protein is combined with carbs and fats, the resulting blood sugar increase is not simply additive, but multiplied."

sorry but this is gibberish, there is no such equation. the effect of fats and protein on blood glucose level have mostly to do with their altering the kinetics of glucose resorption from the intestines.

"Your type 2 experience is evidently not severe enough were you have to learn the complete picture."

K, i don't know why you adopt such a rude tone, i know that some people on this board give you a hard time, but i have not, and i have been trying to help the guy. in any case, you are entirely wrong, again in this letter, about what my experience is. when you write a message that is so error filled, it really strains your credibility and certainly gives you no right to be so rude......
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K, i don't know why you adopt such a rude tone

I am simply stating facts, if you think it is rude to correct you, then you have a problem I cannot help.

Everything I stated is correct and can be found in Dr. Bernstein's book and articles, http://www.diabetes911.net/secrets.php.
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"Everything I stated is correct and can be found in Dr. Bernstein's book and articles, http://www.diabetes911.net/secrets.php."

i made point by point analysis of statements that are incorrect or inaccurate. you cannot just say "everything i say is true", it simply isn't. get yourself a biochemistry book and get an education. i am certain that eating a low/no carb diet will give you low blood sugar and a nice HbA1c, Bernstein is right about that, but all those things in the last letter that you alluded to as fact just aren't, even if some MD says so.
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sorry but this is gibberish, there is no such equation. the effect of fats and protein on blood glucose level have mostly to do with their altering the kinetics of glucose resorption from the intestines.

Leaving out the chemistry of this wonderful discussion, the reality is that if you chomp on sausage and cheese all day....you will still raise your blood sugar to point you will need additional insulin....beyond what a basal will provide.

I don't need to read a book to figure that one out.....I live it everyday.
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To the OP. This Dr. Bernstein that kaellner peddles, disagrees with the American Diabetes Association on diet. I would be very careful of following his advice.
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<<<<This Dr. Bernstein that kaellner peddles, disagrees with the American Diabetes Association on diet. I would be very careful of following his advice.>>>>

Hi ramsfanray,

From the ADA the website:

http://www.diabetes.org/nutrition-and-recipes/nutrition/foodpyramid.jsp

They are recommending a higher carb diet. I have found over the years that the established 'experts' in medicine don't necessarily deal with root problems, they treat symptoms. For example in light of the Accord study, one does wonder if they did find a connection between aggressively treating blood sugar levels and heart disease, if it could have been related to the standard higher carbohydrate diet they were using in the study, thus necessitating higher levels of insulin, thus causing heart problems, etc.

Which brings me to my question. Are you aware of any studies that have actually compared results of the standard ADA diet verses a low carb diet? It seems, since many studies are funded by pharmaceutical companies, that it wouldn't be worth anyone's time or money to check this out. If it really did show that low carb is a better diet, millions of dollars would most likely be lost by the drug companies. But it also seems that many people are having success with low carb diets.

So does the ADA recommend the diet they do because it has been proven to be the best or because it's the way they have always done it? It is the diet my dad has been on for the lat 40+ years for his Type II diabetes. He started out with medicine, and then went to insulin. I wonder if he had done a low carb diet if things would have been different. Surely there have been advances? Or is this really the best diet? If you could direct me to any studies comparing the two diets, I would greatly appreciate it!

gg56
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I think that the treatment of OP's DD's disease should be left up to her doctor. If the doctor says insulin shots before meals or during the school day, then the question is what hoops have to be jumped through in order for school to be able to provide this in order for themselves to be legally protected from liability. That's what it is all about - making sure that the school doesn't get sued if DD has a hypoglycemic reaction or if the needle is dirty and she gets infected.

The fact is, every person with diabetes has a different glucose/insulin control problem. No two metabolisms are the same. Personally, I can eat sausages and bacon and hot dogs and burgers and my blood sugars have never gone up. Throw fries, chips, ketchup, cheese, or anything else with carbs in it, and the results are different. I can also eat 17g carbs worth of Murray's sugar free cookies at 10pm and have a high glucose reading the next morning. But a snack size bag of PoP Secret Move Butter popcorn at the same time, and I have a normal reading after fasting.

Your mileage may differ. I spent a lot of time learning how my metabolism reacts to different foods and different quantities. I do not read the ADA web site religiously, nor am I a strict Bersnsteinite. But generally I know that protein and carbs are not the same thing. Protein helps me build muscle mass as I work out weekly, which improves my metabolism and long term health. Carbs are OK as long as I control how much I take in, how often I eat, and am aware of how quickly they break down (Glycemic Index).

You are free to disagree with me on this. I've only been living with Type II diabetes for 9 years now, and do not profess to have any medical or healthcare advice for anyone else with Type II or Type I diabetes. I expect DD is not the only one in her school with diabetes. I would bet there are support groups available for her and for OP and the family on dealing with a disease that requires constant maintenance. And I am sure these groups would also have information that can help in dealing with educational institutions.

Fuskie
Who encourages you to be non-confrontational in your meeting with school officials and remember this is not a negotiation but a consensus building of their rules and regulations and the best way to take care of DD while in the custody of the school system...
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K, i don't know why you adopt such a rude tone

I am simply stating facts, if you think it is rude to correct you, then you have a problem I cannot help.

==================================================

I feel compelled to interject here, K, many times you DO tend to have a rude tone to your posts/replies. Not just on this board either. In fact, through email, we were discussing this months ago.

J.P.
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Me: sorry but this is gibberish, there is no such equation. the effect of fats and protein on blood glucose level have mostly to do with their altering the kinetics of glucose resorption from the intestines.

You: "Leaving out the chemistry of this wonderful discussion, the reality is that if you chomp on sausage and cheese all day....you will still raise your blood sugar to point you will need additional insulin....beyond what a basal will provide.

I don't need to read a book to figure that one out.....I live it everyday."


sausage often has some carb additives, the more processed, the more carbs. if you go to a real butcher it probably won't. the one thing, for me, that i have never figured out is a certain, and it depends on the type, cheese effect. for me, i am of course being careful here, certain cheeses almost totally obliterate insulin's intended effect. some things i definitely can't explain.....
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The only reason I put up that post was 1) who cars about the chemistry and 2) as you said, carbs are included in just about anything and each person reacts differently.

http://cookingupastory.com/index.php/2006/07/18/episode-8-type-1-diabetes-calvins-war/

The accepted method of carb counting etc is light years ahead of what used to be advocated. Unfortunately, it is an accepted method that you can eat just about anything, as long as you take the insulin to counter it effectively. The above link outlines one child's methods; I have to say, if that is his typical day.......he will have a pretty short life span.....unfortunately.

You can guarantee many doctors out there thing the child in the link is doing a fantastic job. Unfortunately, long term it's not sustainable.
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"The only reason I put up that post was 1) who cars about the chemistry..."



Bruce, i certainly understand this point of view, and yes, you don't have to understand the chemistry to succeed...i put it out there for those who want to follow, and i put it out there when i see someone putting out stuff that is bunk...sorry to trouble you.
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The accepted method of carb counting etc is light years ahead of what used to be advocated. Unfortunately, it is an accepted method that you can eat just about anything, as long as you take the insulin to counter it effectively. The above link outlines one child's methods; I have to say, if that is his typical day.......he will have a pretty short life span.....unfortunately.

It's sad because there are methods were he would end up being healthier than his classmates, because his classmates won't watch their diet until they have their heart attacks or become a type 2, and even then they will not change.

His pump will be no good in about eight years since the scaring that will occur will leave him without any sites. All his meals are carbs and the more carbs means a bigger error in correcting it. Taking 9 units were the exact dosage being ± 3 units means very bad news. The only enemy in Calvin’s War is ignorance, and he will pay with his life.
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To the OP. This Dr. Bernstein that kaellner peddles, disagrees with the American Diabetes Association on diet. I would be very careful of following his advice.

In fact, the ADA has banned Dr. B's books.

You could start a book burning.
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His pump will be no good in about eight years since the scaring that will occur will leave him without any sites.

As you know..I disagree with you on the above. Personally, the pump has been they most important upgrade I've experience. For both control and quality of life.

Don't know it till you try it.
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Don't know it till you try it.

If the pump could measure my blood sugar and adjust accordingly, then it would be a real benefit.

It is a good thing for some people. You should think about taking a proteolytic enzyme such as bromelain or serraflazyme to try to manage the scarring.
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If the pump could measure my blood sugar and adjust accordingly, then it would be a real benefit.

Medtronic already has that feature. I'll be switching to that pump sometime this year.

I personally don't have scarring issues....or irritation at insertion sites.

Visit pumpers.org and see if you find people complaining about scarring. If it really worries you, change your insertion site every 24-48 hours.

The way in which insulin is delivered has little to do with the actual control (though the ability to change basil on the fly is damn cool). The quality of life a pump provides is light years ahead of multiple injections. I haven't touched a needle in two years......and if I have a choice, never will.
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and if I have a choice, never will.

I used hate needles too. I used to use a jet injector exclusively, but with Lantus, I use a needle. With 31-gauge, short needles and done correctly, it is easy as pie.

The adhesives tend to irritate my skin and once the scarring builds up the insulin goes in inconsistently.

I'll evaluate the next generation of Medtronics. You can be the guinea pig.
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I used hate needles too. I used to use a jet injector exclusively, but with Lantus, I use a needle. With 31-gauge, short needles and done correctly, it is easy as pie.

I never hated needles and had never had anyone give me a needle since I was 10 (now 37). The issue is with pulling out needles in restaurants, ski trips and you name it. Life is simplified with the pump to the point you don't have to think about it. If I eat slightly more or less then expected, it's press of the button.

For a 27 year diabetic.......it's amazing what it feels like to forget you have the disease for a few hours.
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