Help please! Dd in hospital diagnosed with diabetes ketoacidosis

[kRenee]

She will be alright but she does have Type 1 diabetes. They have finally got her blood sugar stabilized but I'm in serious need of helpful advice on how to do it once we leave the hospital.

 

Please tell me how you did it from here?

[LNC]

I'm so sorry! It will be hard to get used to at first, but they will train you very well in the hospital. They gave me a book called Understanding Diabetes, (commonly referred to as the Pink Panther book bc of the cover!). It was a lifesaver. Here it is online in PDF:

http://www.uchsc.edu/misc/diabetes/ud11.html

 

My son was diagnosed at just turned 4yo, and he's now just turned 7yo. It is a lot easier now, but it is a huge lifestyle change. There is no getting around that. We'll be here for you. PM me if you would like.

 

This type 1 message board is great for support:

http://forums.childrenwithdiabetes.com/

 

I'll pray for you this week...

[Testimony]

It is the more serious of the two (type 1 and 2). Type 2 is adult onset and can be controled, but type 1 is juvenile diabetes and is usually due to the pancreas does not function at all. The child is insulin dependent for the rest of their life. My husband was diagnosed at 7years old.

 

We gave our children a book called the story of Rufus. It explains to the child about type 1 diabetes and what it means. Also, it explains what you have to do. It is difficult give a small child injections every day, but it has to be done. There are more sophisticated methods, but they sound strong for a young child (my opinion).

 

You have to watch what your child eats. My husband checks himself regularly three times a day. Once before a meal to determine how much food he should take. He usually has a high carb breakfast, a low carb lunch, and a balanced dinner. He eats on a regimented schedule. It must be within a certain amount of time. For example, if he eats breakfast at 9 AM, then lunch at 1 PM, and dinner at 6 PM. He has mini-snacks inbetween.

 

I hope this sort of helps.

 

Also, I will pray for you. I know it is hard to get injected and now you have to give injections. I will definitely pray.

 

Blessing to you and your family.

 

Sincerely,

Karen

http://www.homeschoolblogger.com/testimony

[Quiver0f10]

No advice but :grouphug: !

[WTMindy]

I have no advice, but I'm sending up a prayer for you right now.

[HomeOnTheRanch]

:grouphug:

[Lawana]

My heart goes out to you and your dd. We went through this 2 years ago when dd was 9. How old is your dd?

 

In a nutshell, our experience was something like this. It consumed us at first. For about a month, it seemed like I thought of nothing else. Getting into any kind of a routine took about that long. It was very scary to have her life in our hands. Something was always changing- insulin ratios, attitudes. We were tired from getting up at 2 am to check blood sugar. But after a while it started to get easier- kind of like getting the hang of your first newborn. Even though there were times I just cried, Dd was a trouper. She never complained about the finger sticks or the shots. I would never have believed that I was capable of giving a shot, but I was.

 

It took time to acquire confidence that we could, in fact, handle this. And you can too, because you love your dd, you are her mother, and you will do whatever it takes. It will likely seem totally overwhelming at first, but don't be afaid to ask for the help you need. It does get easier, but it is an ongoing commitment.

 

Your family is in my prayers. Remember, you will get through this.

 

Lawana

[Adrianne]

:grouphug:

 

My dh has type 1 also.

 

If the insulin pump becomes an option for you, definitely consider it. It has made a definite improvement in my dh life.

 

Feel free to post if you need more support!

[kRenee]

We are home from the hospital. I don't think I will get any sleep tonight - I'll be checking on her constantly. She is 12 and has been great through all this. The finger pricks from the hospital stay were brutal but otherwise the only thing she complains about is the sting of the long-acting Lantus insulin. Does anyone have any tips on how to take the sting out?

 

Thanks for your thoughts. We will get through this but, I do feel sad for her. LNC, when I have a few moments I may take you up on your offer to PM you. Thanks.

[TracyR]

No advice but a great place to go to for advice is Parent 2 Parent ( www.parent-2-parent.org ) . There are so many different familes on this board that you will definitley find someone there that will tell you what to expect.

What ever the disability, illness, disease or the condition maybe there are families there that have been there and done that.

 

Sending you hugs and know that your not alone.

[Jenny in Atl]

Your not alone... there are a few of us here with Type-1 kids. Dd8 was dx at 13 months. LNC already posted about the Children with Diabetes board; It's awesome. Their e-mail list was a life saver for me when Fi was first diagnosed. There are folks on the list day and night. Their man website is also great.

 

Also, I'm surprised... are they planning to release her before you have your diabetes training/education? We were in the hospital for at least three days learning all about how to care for Fi. I sure hope they are going to help you.

:grouphug::grouphug:

 

Please PM if you need anything!

[Harriet Vane]

Honestly, I cannot advise your immediate situation. However, a diabetic friend really has a high opinion of her insulin pump. She feels better, more even-keeled, more of the time, and her research indicated that it significantly decreases some of the scarier long-term effects of diabetes. I urge you to consider it as an option.

[Lawana]

About the Lantus: in the hospital the Lantus is generally administered cold- from the refrigerator. Room temperature Lantus is a little easier on the kiddo. You do not need to keep it in the fridge at home. Dd still has times when the shots hurt, even 2 years later. (Probably when a nerve is hit.) Is your dd doing her own shots? For some reason, when my dd gives herself the shot, even when it hurts, it's a little easier to deal with than when someone is doing it TO her.

 

My best to you and your dd. Please ask for the help you need.

 

Lawana

[Jenny in Atl]

Does anyone have any tips on how to take the sting out?.

 

Sometimes a frozen spoon applied to the site right before a shot can help too.

[Lawana]

How long was she in the hospital? How much education did you receive? What are the follow up plans with the endocrinologist?

 

Not trying to be nosy, but it may help to just talk the whole thing out. PM if you would prefer.

 

Lawana

[kRenee]

We were in the hospital for 2 days, but most of that was in ICU and they had her on a insulin drip. Today, immediately after being discharged at the hospital we were expected over at the diabetes center for initial training. They talked me though tonight and we have to go back tomorrow morning, first thing. I will be checking her sugar during the night and am supposed to call if it goes to high or too low. This is scary because she is nowhere near being stabilized and last night her sugars were high enough to need more insulin.

 

Thanks for the tips on the Lantus. We'll try them tomorrow night. She did give herself her shots one time and she handled it well, but today her fingers were so torn up and so sore she couldn't even pick up the syringe. The diabetes center was shocked at the condition of her fingers.

 

The insulin pump sounds like a great idea but they want us to start with manual injections. As soon as we can we'll get a pump.

 

How long did it take you to get your child stable enough that you felt okay letting them go away part of the day. I am so afraid of low blood sugar and maybe no one would be able to help her, even if I did give them instructions. I just want to tie her up right now and keep her within arms reach and I don't think that is going to work for very long.

[kortney in AL]

My 13yo son was diagnosed Type 1 five years ago. We received very thorough training while we were in the hospital. He's on an insulin pump now. I highly recommend that you find a good pediatric endocrinologist to follow up with and see regularly. I do know how overwhelming it is in the beginning. When they discharged us from the hospital I cried because I was so scared to bring him home. I know you probably won't believe this now, but it will get easier. Keeping blood sugars stabilized is a process. Don't go home and expect them to immediately stay within range all the time. There will be ups and downs because lots of things affect blood sugars.

[kortney in AL]

We were in the hospital for 2 days, but most of that was in ICU and they had her on a insulin drip. Today, immediately after being discharged at the hospital we were expected over at the diabetes center for initial training. They talked me though tonight and we have to go back tomorrow morning, first thing. I will be checking her sugar during the night and am supposed to call if it goes to high or too low. This is scary because she is nowhere near being stabilized and last night her sugars were high enough to need more insulin.

 

Thanks for the tips on the Lantus. We'll try them tomorrow night. She did give herself her shots one time and she handled it well, but today her fingers were so torn up and so sore she couldn't even pick up the syringe. The diabetes center was shocked at the condition of her fingers.

 

The insulin pump sounds like a great idea but they want us to start with manual injections. As soon as we can we'll get a pump.

 

How long did it take you to get your child stable enough that you felt okay letting them go away part of the day. I am so afraid of low blood sugar and maybe no one would be able to help her, even if I did give them instructions. I just want to tie her up right now and keep her within arms reach and I don't think that is going to work for very long.

 

My son has a blood sugar meter called the Freestyle Flash. It only takes a small amount of blood and he can prick the top of his arm. It gives his fingers a rest. Sometimes you do need to do a finger stick, but for other times it helps to use another site.

[kRenee]

I have a few minutes to formulate some questions my dd and I have. For those you are dealing with diabetes: Do you always have your insulin with you, no matter what you do or where you go? Do you ever go anyplace alone? How long did it take you to start to be able to feel when your blood sugar was too low? Have you ever had a sugar low when you were sleeping? It seems to me that you could get yourself into a dangerous situation and not even be aware of it. Can you feel it when it is too high? How many times a day do you test? Are you able to keep your blood sugar within the acceptable limit? What are the long term complications we need to be aware of? How do you manage your diabetes? Do you count carbs? Are all your meals even in carbs or do you eat what you want and adjust your insulin dose according to what you plan to eat. What if you decide to eat something you didn't plan on after taking the insulin- what do you do? And my dd wants to know if she will ever be able to "just have an apple when I feel like it".

 

We got through the night beautifully. We'll do breakfast in a few hours and then be on the road to the diabetes center to get more information.

 

Thanks everyone,

Karen

[Lawana]

I just have a couple of minutes before I take my diabetic dd to horseback riding camp. It was extremely scary to let my dd go anywhere without me for the first several weeks. Because we homeschooled, we could put off that seperation for a while. I had a good friend that was very interested in learning about diabetes so she could have dd visit with her dd- that was our first separation.

DD does not always have her insulin with her- if we're going someplace for a few hours that doesn't involve a meal, we leave the insulin at home. That said, there have been a very few times we went out without insulin and ended up wishing we had it if our plans changed.

 

Sorry I have to run, I'll type more later.

 

And generally, no, you can't just grab an apple and eat it without at least checking blood sugar. Maybe half an apple would be okay. My dd's biggset worry was that she wouldn't be able to eat mashed potatoes, which of course, she can.

 

Lawana

[Jenny in Atl]

Do you always have your insulin with you, no matter what you do or where you go? YES!!! And meter, glucose tabs, glucagon kit, and a small snack.

 

Do you ever go anyplace alone? She is still too little, but I know older D-kids who drive and work, go places on their own.

 

How long did it take you to start to be able to feel when your blood sugar was too low? She knew pretty quick, and thankfully can still tell most of the time if she is low.

 

Have you ever had a sugar low when you were sleeping? Yup, we still get up every night to check. Since she is more stable these days (on the pump) if we have had a good day, I can check at midnight and sleep through to about 6.

 

 

It seems to me that you could get yourself into a dangerous situation and not even be aware of it. Can you feel it when it is too high? Not as much, she know if she is really high, like in the 300's.

 

 

 

How many times a day do you test?

10 times a day (this is for the pump, less if on shots).

 

Are you able to keep your blood sugar within the acceptable limit? Never focus on each blood sugar level, focus on the over all trends and levels. Fi has great control on the pump. Last A1C was 6.1

 

 

 

What are the long term complications we need to be aware of? Don't think about these right now. Diabetes is a marathon. Take on day at a time.

 

How do you manage your diabetes? It's just a part of us, we just do it and try not to let it get too much in the way.

 

 

Do you count carbs? Yes, but only so we know what to bolus (give insulin for a meal). One the pump, kids eat pretty normally.

 

 

Are all your meals even in carbs or do you eat what you want and adjust your insulin dose according to what you plan to eat. She eats what she wants, we just cover the carbs and adjust for fat and fiber.

 

What if you decide to eat something you didn't plan on after taking the insulin- what do you do? If on multi-shots or the pump, you just give more insulin depending on what type of food. You need to be careful about stacking shots. You will learn more about this.

 

 

And my dd wants to know if she will ever be able to "just have an apple when I feel like it". She will. It just takes some time.

[Laurie4b]

Make sure you get a good pediatric endocrinologist.

 

A friend's ds was diagnosed at age 3. Their doctor didn't have enough experience with kids, and kept them erring on the side of "too low" rather than "too high." He ended up with brain damage. Apparently, from what she told me, "too high" doesn't impact kids that much, but "too low" does. It's the opposite with adults.

[Jenny in Atl]

Make sure you get a good pediatric endocrinologist.

 

A friend's ds was diagnosed at age 3. Their doctor didn't have enough experience with kids, and kept them erring on the side of "too low" rather than "too high." He ended up with brain damage. Apparently, from what she told me, "too high" doesn't impact kids that much, but "too low" does. It's the opposite with adults.

 

:iagree::iagree::iagree::iagree::iagree:

Much better to correct for a high!

[Caroline]

I don't have a child with diabetes, but my dh's brother was diagnosed at 13. At 30, he carries all the supplies Jenny mentioned. He is not on a pump. And, of course at 30 he can go places by himself. But I remember how hard it was for my MIL when he was first diagnosed.

 

My 13 year old was just referred to an endo for weight loss, so I may be askng simar questions soon.

[Lawana]

Picking back up.

Dd could tell when she was low immediately. She had symptoms such as shaking, blurry vision, headache, even though her BG(blood glucose) was only in the 60's. Now her symptoms are less intense, which I understand is normal. Her symptoms for high BG are less definite, often being just an unwell feeling.

 

Dd tests her BG on average of 6 times a day, more if she is low or high. She is on Lantus and Humalog shots.

 

We count carbs for each meal. We've settled into a pattern for most meals; for example, she usually has about 50g for breakfast, 60g for each of lunch and dinner. Her BG is most stable when she eats high fiber, balanced and healthy food. Surprize! At first we gave the shots AFTER she ate so we would know exactly how much to give. But you get better control if you give the shot BEFORE. We waited until we were pretty comfortable with knowing how much she usually ate before switching to giving the shot after the meal. There are plenty of times, though, when her ideal meals just don't happen because we are eating out, having a holiday meal, etc. Then we deal with less than ideal BG.

 

Our experience has been that it is not possible to ALWAYS have BG within target limits. The biggest reason is that there are so many factors that affect BG- stress, growth hormone, activity level, illness, menstrual cycle all in addition to how many carbs are consumed. In addition, we were told "a carb is a carb is a carb" which clearly is not not the case for dd. But carbs are the only thing that you use to calculate Humalog, with adjustments for exercise. Especially at first, it can be very frustrating to measure your food servings, give just the right amount of Humalog, and then still end up with high or low BG. It happens. Don't take it as personal failure because it's not. The longer you do this, and the more observant you are, the more you will recognize patterns that you can adapt to.

 

Dd reminded me about something else. She had a voracious appetite when she came home from the hospital because she had lost 15 pounds before she was diagnosed. She quickly regained about 5 or 6 pounds (she was a bit on the heavy side) then her appetite returned to normal. Also, she entered into the honeymoon phase within a week of being home, so her insulin needs were constantly being lowered, to the point that if she ate just right, she needed no insulin whatsoever. The honeymoon period lasted 6 months for dd.

 

I am a one-track person, so at first, I needed to be able to devote as much attention as necessary to dd and learning about diabetes. I put aside much of what was distracting me and read, read, read. It was a good month before I could pick back up with the rest of my life. But of course, YMMV.

 

Diabetes is a BIG deal, just as having a baby is a BIG deal. As time goes on, it becomes second nature to check BG, count carbs, give injections. But until then, give yourself permission to take enough time to adjust, read, talk, reach out, whatever it takes. You CAN do this, just ask for the help you need.

 

If your dd is interested, she might like to correspond with my dd, 11. Just PM us.

 

Lawana

[kRenee]

Thank you all for your help - I can't express what a comfort it has been. I will ask my dd if she would like to have a similar-in-age email penpal. It sounds like a real good idea to me, but she is handling the whole diagnosis a little differently than I am, naturally.

 

Karen

[Murphy101]

:grouphug:

 

My dh has type 1 also.

 

If the insulin pump becomes an option for you, definitely consider it. It has made a definite improvement in my dh life.

 

Feel free to post if you need more support!

 

The insulin pump sounds like a great idea but they want us to start with manual injections. As soon as we can we'll get a pump.

 

 

I just want to chimein to point out every patient is different. My dh has been type 1 for over 30 years, since he was 6 yrs old. He has been on the pump for 3 yrs. because he has become intolorant to ALL long lasting insulins. So the pump was/is the only current option for getting a continuous drip of insulin. He has a profound hatred of his pump and he also has not felt the better "evening out" - his blood sugars were actually more stable on injections prior to developing intolorances.

 

My dh says it was easier when he was a kid. Back then there were no alternatives to sugar. Fake sugar wasn't invented until he was in about 5th grade. So diabetic kids were told flat out "NO sugar ever unless it's for low blood sugar" which made the lifestyle change much easier. (At least for him.)

 

My dh is adament that if one of our dc develops type 1, he wants them on injections for as long as possible because he feels it makes them more aware and more in control.

 

Please know I'm not faulting anyone who uses the pump.

Just saying it's not the awesome thing it's billed for everyone, blessed though we are to have it because my dh really has no other choice if he wants to keep living right now.

:grouphug:

[Mom2legomaniacs]

It is the more serious of the two (type 1 and 2). Type 2 is adult onset and can be controled, but type 1 is juvenile diabetes and is usually due to the pancreas does not function at all. The child is insulin dependent for the rest of their life. My husband was diagnosed at 7years old.

 

 

Actually, Type 1 can be adult onset as well. My dad was diagnosed this when he was in his late 20's, I believe (I was young, but remember his being in the hospital). He has been insulin dependent for over 35 years! It takes a lot of managing, but can be controllable so that a relatively normal existence is possible.

:grouphug: for you all. This will be life altering and difficult to get used to. I hope that your dd's situation is easier to regulate. Good luck!:grouphug:

[Jenny in Atl]

I just want to chimein to point out every patient is different. My dh has been type 1 for over 30 years, since he was 6 yrs old. He has been on the pump for 3 yrs. because he has become intolorant to ALL long lasting insulins. So the pump was/is the only current option for getting a continuous drip of insulin. He has a profound hatred of his pump and he also has not felt the better "evening out" - his blood sugars were actually more stable on injections prior to developing intolorances.

 

My dh says it was easier when he was a kid. Back then there were no alternatives to sugar. Fake sugar wasn't invented until he was in about 5th grade. So diabetic kids were told flat out "NO sugar ever unless it's for low blood sugar" which made the lifestyle change much easier. (At least for him.)

 

My dh is adament that if one of our dc develops type 1, he wants them on injections for as long as possible because he feels it makes them more aware and more in control.

 

Please know I'm not faulting anyone who uses the pump.

Just saying it's not the awesome thing it's billed for everyone, blessed though we are to have it because my dh really has no other choice if he wants to keep living right now.

:grouphug:

 

Hummm... I disagree, strongly. If you look at the studies the pump comes out as a much better tool than MDI. Fi has used just about all the insulin therapies you can (Regular & the evil nasty NPH, Novalog & Lantus, and now Humalog via the pump for the last four years).

 

There is no way to get the kind of control you get with the pump via shots. As soon as you take that background insulin (Lantus, which is awesome compared to NPH), you can stop it. So if you get sick, you are force feeding to meet that insulin, not a fun thing to do. You can't deliver insulin over an extended period of time to cover high fat foods like pizza or chocolate, like you can with the pump. No combo bolus. It's just not anywhere near the same. Or set it to cover food eaten over an extended period of time, like at a party or formal gathering. You also can't give tiny amounts to cover additional food like with the pump. I can give as little as .05 units. Try that with a insulin pen or regular needle. And I just got her latest A1C.. she went from a 6.1 to 5.6! No way we could have gotten that on MDI.

 

I know a number of kids who won't go on the pump, but it's due to not liking something attached to their body 24/7, and I don't have an issue with that. But, to say that you have better control and are more aware on MDI is just incorrect. Here is one of many studies...

 

At the ADA 63rd scientific meetings, Elizabeth Boland from Yale Pediatrics Diabetes Team presented the group's finding titled Insulin Pump Therapy Lowers HbA1c More Than Insulin Glargine in Diabetic Children. In an ongoing randomized, prospective study, they are comparing the use of pump therapy with insulin aspart versus multiple injections (4 per day) consisting of insulin glargine (once-daily) and insulin aspart taken at meal times and snacks in 30 patients with type 1 diabetes ages 8 to 19 years of age. Preliminary findings showed that pump therapy was more effective in controlling blood sugar as measured by HbA1c than the multiple injection regime. At 4 months, pump users significantly lowered their HbA1c to 7.2% from 8.1% at baseline. There was no significant drop in the MDI group. Pump users as compared to glargine users significantly lowered their total daily dose of insulin. There were no cases of diabetic ketoacidosis and 4 episodes of severe hypoglycemia in the MDI group and 2 in the pump group. After 4 months, all 12 children on the pump group chose to continue with that therapy, and 12 of the 14 children in the MDI group opted to switch to the pump. The researchers suggest that young children be offered pump therapy to help them achieve better metabolic control.

[chickenpatty]

I'm so sorry! My 9yr old dd was diagnosed with Type 1 back in February. It was so scary & I felt like our world was falling apart for a while. It did help that we have great pediatric endocrinologists who were were in contact with daily for about a month.

 

We got a cool looking sling-back style insulated lunch bag from Target that goes with us every where we go. It has room enough for the meter, insulin, syringes, snacks & a glucagon.

 

I don't know if anyone else has posted this or not, but this website http://forums.childrenwithdiabetes.com/forumdisplay.php?f=3 is EXTREMELY helpful.

 

Diabetes really sucks, but hang in there, you can do it.

 

((hugs))

[Jenny in Atl]

Actually, Type 1 can be adult onset as well. My dad was diagnosed this when he was in his late 20's, I believe (I was young, but remember his being in the hospital). He has been insulin dependent for over 35 years! It takes a lot of managing, but can be controllable so that a relatively normal existence is possible.

:grouphug: for you all. This will be life altering and difficult to get used to. I hope that your dd's situation is easier to regulate. Good luck!:grouphug:

 

No, Type-1 is now called that because folks of all ages can get it and juvenile diabetes was not a great term for the disease. But it's not adult onset, that is Type-2. Many Type-2 patients due use insulin along with other medicines to control their blood sugar levels. Type-1 is an autoimmune disease where the body has attacked itself and killed off the islet cells that produce insulin. Type-2 is cause more by hereditary and lifestyle factors, and it can vary from insulin resistances to the pancreas no long producing recognizable insulin. There are a couple other lesser know types Type 1B which starts off like Type-2 but ends up like Type-1 and other in infants (6 months and under), which I can't remember the name of.

[Mom2legomaniacs]

No, Type-1 is now called that because folks of all ages can get it and juvenile diabetes was not a great term for the disease. But it's not adult onset, that is Type-2. Many Type-2 patients due use insulin along with other medicines to control their blood sugar levels. Type-1 is an autoimmune disease where the body has attacked itself and killed off the islet cells that produce insulin. Type-2 is cause more by hereditary and lifestyle factors, and it can vary from insulin resistances to the pancreas no long producing recognizable insulin. There are a couple other lesser know types Type 1B which starts off like Type-2 but ends up like Type-1 and other in infants (6 months and under), which I can't remember the name of.

 

Okay, but he does have the kind where his pancreas has no function whatsoever. At the time, it was labeled Type 1 adult-onset (but that was 35 years ago). So I am wondering what his would be called these days. I will have to go look that up now.

 

Okay, I looked up the terms, which have changed since he was originally diagnosed. He was diagnosed with Type 1 which apparently happens up to the late 30's in age. It is not called adult onset anymore. The Type 2 has taken over that phrase now, I guess. So, he insulin dependent (type 1). I think that is the correct terminology now.

[Murphy101]

Hummm... I disagree, strongly.

 

Then we'll have to agree to disagree then. No study is the same as in real life daily use and no study tells of the individual patient. Every patient is different. If they were all clinical replicas medicine would be a much more exact science than it is.

 

There is no way to get the kind of control you get with the pump via shots. As soon as you take that background insulin (Lantus, which is awesome compared to NPH), you can stop it. So if you get sick, you are force feeding to meet that insulin, not a fun thing to do.

 

We never felt we were "force feeding the insulin". Regardless of pump or shots, or even diabetes - even sick people need some small amount of callories. It was never that big a deal. And oN a pump, you are still getting a continuous insulin drip. It's not like the pump means you can turn off your insulin. Pump users aren't supposed to take their pump off or turn it off completely for more than a couple hours tops.

 

You can't deliver insulin over an extended period of time to cover high fat foods like pizza or chocolate, like you can with the pump.

 

Diabetics aren't supposed to eat like that and having a pump doesn't mean they should either.

 

Or set it to cover food eaten over an extended period of time, like at a party or formal gathering.

 

That really isn't the healthiest way for a diabetic to be eating. The occassional event was never a problem to accomodate on shots. :confused:

 

I know a number of kids who won't go on the pump, but it's due to not liking something attached to their body 24/7, and I don't have an issue with that. But, to say that you have better control and are more aware on MDI is just incorrect.

 

Yes, the constant tether factor is cumbersome and a bigger hassle than they are told. For those leading a sedentary lifestyle, it's not that big a deal. But for my dh it's been a royal pain.

 

No, it's not incorrect. 24 kids is not a very good clinical example. And even so, I didn't say it was incorrect. I said that every patient is different. For some, like my dh, it might be incorrect. He had excellent control prior and now it's much harder for him. Also, the awareness thing can be a pain too. For example, he used to "feel" low at about 75 or 80, but now if it gets to even 90 he feels like he used to when it hit 50. A HUGE difference. Used to be he'd eat a bit at 70 and avoid memory lapse, passing out, and so forth pretty easy. Now, he can go from 100 (feeling pretty good and even) to just 90 and appear drunken. Same goes in the other direction. He used to feel a high sugar at about 140/150, start to get a bit cranky. Now, he can really feel yucky and irritable at just 130. So he has to be hyper vigilant about keeping his sugar between 95 and 110 because the slightest bit higher or lower can really mess him up. (As in he can't function very well!!) Basicly his safe sugar window is VERY narrow now, which makes it harder to keep.

 

Now, if someone is having a really hard time keeping in their safe sugar window, then a pump does give them more options. But many people don't have a safe window problem, they have a lifestyle problem. My dh didn't have a lifestyle problem. He is very healthy, eating and active. Goodness he had to GAIN weight because he only had 2% body fat! For my dh, he says one of the biggest problems he sees with friends/coworkers on the pump is that it makes it too easy for them to not drasticly change their lifestyle. They think they can eat anything they want and just press some buttons. As you pointed out, you just cannot do that with MDI. For him, as in my individual husband, the pump has been a VERY hard transition that is more difficult for him to deal with on a daily basis. It is NOT incorrect for me to say that.:confused:

 

And I absolutely do NOT think that everyone should avoid the pump.

Again, I'm not even against pumps, they are neccessary and good for many people. Heck, because of his intolorances mine would be dead without a pump! But we are individuals, not test studies. We should look at our own health and life situation and make medical decisions accordingly. That's all I meant to really say.

 

Sorry if our different life experience offended you in some way.

[siloam]

Okay, but he does have the kind where his pancreas has no function whatsoever. At the time, it was labeled Type 1 adult-onset (but that was 35 years ago). So I am wondering what his would be called these days. I will have to go look that up now.

 

Okay, I looked up the terms, which have changed since he was originally diagnosed. He was diagnosed with Type 1 which apparently happens up to the late 30's in age. It is not called adult onset anymore. The Type 2 has taken over that phrase now, I guess. So, he insulin dependent (type 1). I think that is the correct terminology now.

My dh has adult onset and this is how his Endo. classifies it:

 

Type 1 is child onset insulin dependent.

Type 2 is adult onset but manageable through drugs and diet.

Type 1.5 is adult onset insulin dependent.

 

My dh is type 1.5. :D

 

I think they are trying to make a distinction between people who have the a medical defect and people who have it because of lifestyle choices.

 

(((KRenee))) It is hard having a spouse with this, it would be harder to have a child with it. But it is livable, the learning curve is just high.

 

Heather

[Murphy101]

(((KRenee))) It is hard having a spouse with this, it would be harder to have a child with it. But it is livable, the learning curve is just high.

 

 

 

:grouphug::iagree: My dh is a wonderful, healthy, son, father, friend, husband, and employee who has a very full and good life and has done very well for a person who's been diabetic for 30+ years. It's very managable.

 

We say all the time that if this is the worst that ever happens to him or should happen to our kids we'll feel very blessed to have had such a "charmed" life. It can be scary at times, but if well managed, those times won't always consume your daily life and they can be assured of a very full and healthy life.:grouphug:

[Jenny in Atl]

:confused:

We never felt we were "force feeding the insulin". Regardless of pump or shots, or even diabetes - even sick people need some small amount of callories. It was never that big a deal. And oN a pump, you are still getting a continuous insulin drip. It's not like the pump means you can turn off your insulin. Pump users aren't supposed to take their pump off or turn it off completely for more than a couple hours tops.

 

You have never had a child with the stomach flu who has just had her shot of NPH or even Lantus.

 

And it's not true, you can disconnect for more than two hours (under ok from the endo). We do it all the time for swimming, and have gone off for the stomach flu for as much as 4 hrs.

 

 

Diabetics aren't supposed to eat like that and having a pump doesn't mean they should either.

 

Again, not true. Much has changed in the understanding of Type-1. They are not like Type-2 diabetics. We see a pediatric nurse dietitian and she encourages the kids to eat as normally as possible. You are comparing an adult to a growing kid. Type-1 kids don't have to eat nasty fake sugar, they can have the real thing, like everyone else. And yes, I agree... within moderation. But with the pump there is much more flexibility to what, when, and how much you eat. We don't have to follow the old 30-15-30-15-30-15 rule for carbs.

 

 

That really isn't the healthiest way for a diabetic to be eating. The occassional event was never a problem to accomodate on shots. :confused:

 

Not sure what you are taking about. My kid eats far better than most I know. Since we also have Celiac Sprue we don't pig out on processed food, but I do make Gluten Free pizza a few times a month, and she is allowed to eat chocolate or even ice cream like other kids, but not everyday.

 

Yes, the constant tether factor is cumbersome and a bigger hassle than they are told. For those leading a sedentary lifestyle, it's not that big a deal. But for my dh it's been a royal pain.

 

Ok, I have an active 8 year-old and she has been on the pump since she was 3. She swims, plays soccer, runs, jumps, rock climbs with dh. Not sure how sedentary that is. Many of the top type-1 athletes use pump therapy. Again, it seems like you are transferring your husband's dislike to all, and this is not so.

 

No, it's not incorrect. 24 kids is not a very good clinical example. And even so, I didn't say it was incorrect. I said that every patient is different. For some, like my dh, it might be incorrect.

 

I only posted one study, here are a few more. I can find more than these, but don't want to sit here all day.

http://www.childrenwithdiabetes.com/pressreleases/metronic20050613.htm

 

 

He had excellent control prior and now it's much harder for him. Also, the awareness thing can be a pain too. For example, he used to "feel" low at about 75 or 80, but now if it gets to even 90 he feels like he used to when it hit 50. A HUGE difference. Used to be he'd eat a bit at 70 and avoid memory lapse, passing out, and so forth pretty easy. Now, he can go from 100 (feeling pretty good and even) to just 90 and appear drunken. Same goes in the other direction. He used to feel a high sugar at about 140/150, start to get a bit cranky. Now, he can really feel yucky and irritable at just 130. So he has to be hyper vigilant about keeping his sugar between 95 and 110 because the slightest bit higher or lower can really mess him up. (As in he can't function very well!!) Basicly his safe sugar window is VERY narrow now, which makes it harder to keep.

 

Sounds like he is having problems with the type of insulin, not the pump. Did he switch from Humalog to Novalog? Novalog is slower to react and lasts longer than Humalog. And yes, all people are different in how they feel given their numbers. Again, you are comparing a grown man who has had Type-1 for many years to kids (some newly diagnosed). The longer you have Type-1 the less you are able to be aware of lows and highs. I know we are already beginning to see that with Fi. She feels only the lows that happen fast, when she is dropping quick, and the highs that are really high, like 350. Also has he experimented with his basals? Fi has almost 15 basal levels throughput the day and night, which we adjust weekly due to activity.

 

 

Now, if someone is having a really hard time keeping in their safe sugar window, then a pump does give them more options. But many people don't have a safe window problem, they have a lifestyle problem. My dh didn't have a lifestyle problem. He is very healthy, eating and active. Goodness he had to GAIN weight because he only had 2% body fat! For my dh, he says one of the biggest problems he sees with friends/coworkers on the pump is that it makes it too easy for them to not drasticly change their lifestyle. They think they can eat anything they want and just press some buttons. As you pointed out, you just cannot do that with MDI. For him, as in my individual husband, the pump has been a VERY hard transition that is more difficult for him to deal with on a daily basis. It is NOT incorrect for me to say that.:confused:

 

I'm just as confused, the pump is more like a pancreas, this is the direction the research and technology are moving. I can't wait for out insurance to cover the continuous glucose monitor (so I can sleep again). The hope is for an implantable closed system within the next ten years. Now there are still Type-1s who are using pork insulin and won't budge from that awful NPH. That's their choice. But I think you need to be careful when making statements that are out of date or that cast a pretty negative light when some of these families have just begun their diabetes journeys, and have not like us been doing this for a while. I have spent the last seven years, with little sleep, making sure my dd8 has as healthy and happy a life as possible. She has three strikes against her already (Type-1, Celiac, and Hypothyroid), and I can honestly say, the pump gave us back our life after two and-a-half awful years on shots, chasing highs and scary lows. Because some adults are not dealing well with theirs and eating in an unhealthy manner is not the fault of the pump, but their own. I don't see this as the same thing.

 

And I absolutely do NOT think that everyone should avoid the pump.

Again, I'm not even against pumps, they are neccessary and good for many people. Heck, because of his intolorances mine would be dead without a pump! But we are individuals, not test studies. We should look at our own health and life situation and make medical decisions accordingly. That's all I meant to really say.

 

Then I guess I'm very confused. I think you all are having a hard time with it, and I totally understand. Diabetes is not something you can take a vacation from. We live in an amazing time for people with this disease. Just a few short years ago, there were no meters (just urine strips), now we have a number of insulins, with new ones on the way. CGMs that can alert one to a low or high way before they feel it. The pump, and hopefully soon an implantable "pancreas" and gene therapy.

 

Sorry if our different life experience offended you in some way.

 

I'm not offended at all. Just very passionate about good information being available to new dx families. Fi just received her latest A1C today, it was 5.6! We are very lucky to have wonderful endocrinologist and nurse educator. It takes work, but you can keep your kids happy and healthy with this not so fun visitor (we call it Fi's twin).

 

 

[Murphy101]

You have never had a child with the stomach flu who has just had her shot of NPH or even Lantus.

 

And it's not true, you can disconnect for more than two hours (under ok from the endo). We do it all the time for swimming, and have gone off for the stomach flu for as much as 4 hrs.

 

Okay I just went over and spoke to dh about our little discourse within this thread.hmm. No, I've had a dh in the same boat. And he is just as baffled as me about why you would feel the need to take the pump off for the flu. He just checked his sugar regularly and acted accordingly to it. No big deal.

 

Again, not true. Much has changed in the understanding of Type-1. They are not like Type-2 diabetics. We see a pediatric nurse dietitian and she encourages the kids to eat as normally as possible. You are comparing an adult to a growing kid. Type-1 kids don't have to eat nasty fake sugar, they can have the real thing, like everyone else. And yes, I agree... within moderation. But with the pump there is much more flexibility to what, when, and how much you eat. We don't have to follow the old 30-15-30-15-30-15 rule for carbs.

 

No, a healthy diabetic diets is healthy for everyone, regardless of age or whether they are on the pump or not. I have no idea why you think our information is outdated. My dh has been under continuous endo and dietician care for over 30 years. And yes, I'm comparing that a healthy diet for a kid becomes the healthy habit for the future adult they become. The only fake sugar my dh ever has is his diet pepsi. Not sure where that is comming from. We are anti-faux foods in this house as much as possible. We don't follow a 30-15 rule either.

 

As for eating "normally" I think that's dangerous ground as information. The truth is almost all american children do not have a very healthy normal diet. I'm thrilled your dd does, but "normal" in america schools usually is not healthy, diabetic or otherwise.

 

Not sure what you are taking about. My kid eats far better than most I know. Since we also have Celiac Sprue we don't pig out on processed food, but I do make Gluten Free pizza a few times a month, and she is allowed to eat chocolate or even ice cream like other kids, but not everyday.

 

That's far different than the pizza party mental picture you gave me previously. No a couple slices of pizza is no big deal. Constantly eating carbs, esp simply sugar ones, is.

 

Ok, I have an active 8 year-old and she has been on the pump since she was 3. She swims, plays soccer, runs, jumps, rock climbs with dh. Not sure how sedentary that is. Many of the top type-1 athletes use pump therapy. Again, it seems like you are transferring your husband's dislike to all, and this is not so.

 

No, I'm not. YOU are. I specificly said that for my husband it's been a pain to deal with. That doesn't mean it is for everyone. It means it is for my dh. YOU are adding more to what I said than was there. Also, you seem to be more comfortable with taking off the pump than we are, so yes taking it off all the time would make it less tethering, but I don't know that I'd recommend doing it. My dh absolutely would not feel comfortable doing that. He is also very active, soccer, dodge ball, rock climbing, 8 kids to wrestle with and so forth.. I said repeatedly that I completely understand that the pump is a great option for some people. I only meant to illustrate that it is not a great FIRST option for everyone, in our expereince.

 

Sounds like he is having problems with the type of insulin, not the pump. Did he switch from Humalog to Novalog? Novalog is slower to react and lasts longer than Humalog.

 

No, he uses humalog because if he develops an intolorance to it also, they will have one last insulin to try to switch to. However, they work the same as per his endo appt last month.

 

The longer you have Type-1 the less you are able to be aware of lows and highs.

 

Not quite accurate. The longer one has uncontrol type 1, the less aware they are of lows and highs.

 

Also has he experimented with his basals? Fi has almost 15 basal levels throughput the day and night, which we adjust weekly due to activity.

 

I can't wait for out insurance to cover the continuous glucose monitor (so I can sleep again).

 

Okay, still talking to dh...

I read him this and he said, "AAAAAH. Ask her if her dd is a brittle diabetic. (My dh is not a brittle - which is a testament to his great health!) If she is, that's why her mother has to still get up to test her sugars at night and she needs 15 basel levels instead of a constant 1 - 3 levels. The point of a basel level is to have an EVEN sugar/insulin level. Needing 15 different basel levels is the equal to a MDI needing 10 shots a day.

 

The hope is for an implantable closed system within the next ten years. Now there are still Type-1s who are using pork insulin and won't budge from that awful NPH.

 

There is absolutely nothing wrong with using NPH, IF it is working correctly for the patient. My dh used it with great results for nearly a decade with zero ill affects before switching to synthetics when he developed an intolorance to the pork derived. I have no idea why you keep referring to it as "that awful" - it's not awful in the least, it's just another choice of insulin and for SOME patients it may be the best choice. We have 2 friends who developed intolorances to synthetic and had to switch to beef/pork derived for now. They are much healthier for having that option.

 

But I think you need to be careful when making statements that are out of date or that cast a pretty negative light when some of these families have just begun their diabetes journeys, and have not like us been doing this for a while.

 

My statements are NOT out of date. Healthy eating, exercise, and making individual based medical decisions to suit the individual patient is NOT out of date.:confused: I don't feel I cast a negative light. Although you seem pretty free about casting a negative light on MDI:001_huh: and at least one entire kind of insulin. I gave a real life perspective. I guess I could make all pretty and rosy, but I fail to see how that helps anyone either.

 

I have spent the last seven years, with little sleep, making sure my dd8 has as healthy and happy a life as possible. She has three strikes against her already (Type-1, Celiac, and Hypothyroid), and I can honestly say, the pump gave us back our life after two and-a-half awful years on shots, chasing highs and scary lows.

 

Then that's great for YOU. But YOU are not every patient or family anymore than my dh is either. From OUR perspective we spent 1.5 years doing the same thing because of his neccessary switch to the pump. I'm genuinely thrilled that the pump worked for you, but he had wonderful success with MDI and highly recommends it as a first option.

 

Because some adults are not dealing well with theirs and eating in an unhealthy manner is not the fault of the pump, but their own. I don't see this as the same thing.

 

Yes, some of it is adults, but I wasn't just referring to adults either - we also know several type 1 diabetic children with the same problems changing their mentality about their lifestyle when they are on a pump. There's a strong attitude that all they have to do is press some buttons and they can eat anything they want. Yes, that may not be the fault of the pump, but the pump makes it easier to get away with that attitude. If they had to take an injection each time instead of pressing some buttons, they'd have a harder time saying yes to foods when they shouldn't.

 

I think you all are having a hard time with it, and I totally understand. Diabetes is not something you can take a vacation from.

 

Actually, we're doing great and my dh's endo says my dh is one of the healthiest diabetics he's ever had, for that matter he's very healthy regardless of type 1.

 

I'm not offended at all. Just very passionate about good information being available to new dx families.

 

Oddly enough, we feel the same way. Good information is a lot more than just singing the praises of the insulin pump. Good information entails ALL the information, the good, the bad, and the ugly. And the biggest frustration with medicine is that every patient may have a different good, bad, and ugly reaction to the same medical care.

[Jenny in Atl]

I sure many are tired of this thread, but I do want to say.. No Fi is not a brittle diabetic, she does have a number of basals through the day but the levels are not wildly fluctuating they just move up and down per activity. I don't take her off the pump all the time, only for swimming (our Pediatric Endo, one of the best known in the US, is perfectly fine with this) and baths/site change.

 

I was not saying people should go hog wild and eat junk food, just that there is more freedom to be "normal" on the pump. I guess I don't see normal = eating tons of carbs, we eat very few, again due more to Celiac than Type-1.

 

Sick days are easier, you can stop delivery, change the basal rate, etc. Can't do that on MDI. I'm not against MDI, may have to go back to it if insurance gets any worse (but it would be a step backwards for us). I do dislike NPH, and I am not alone is this. As for checking sugars at night, I am also not alone in this. I usually check at midnight and sleep through till 7am. But if she has been sick or is running either high or low and has had a correction, I check again at 2am. I could not live with myself if she had a bad low and we did not catch it, or if the pump stopped working (this can happen) and she has been left for more than a few hours with no insulin. So far on the pump, lows are not near the problem they used to be. Fi got this as a baby, so yes, our experience is very different. I'm on a list with over 3,000 parents of children with diabetes. Over the last seven years I have seen many more see great improvements with the pump. I guess you are right. We will have to agree to disagree. I'm truly sorry your dh hates his pump. Fi loves hers.

 

Cheers!

 

 

FYI,hypoglycemia unawareness is not limited to one cause.

http://www.diabetesselfmanagement.com/articles/Diabetes_Definitions/Hypoglycemia_Unawareness