Brittle Diabetic

[Jon]

My son is in the hospital with sever ketoacidosis tonight. One of the nurses in the ER suggested that he may be a "Brittle Diabetic". Is anybody familiar with this term? It sounds like it means he cannot control his bg without a pump.

I have been having a difficult time keeping him under control, and it is worse in the summer when he is not on his school routine. I have been trying to get him on a pump for over a year now, but his doctors are not cooperating. I think they are stalling, although I have no idea why. That's Kaiser for you. I don't recommend them to anybody.

[snydermom]

Jon - I have no idea what all may be wrong with your boy nor what "brittle diabetic" means. But there's someone out here in Pittsburgh rooting for you! Good luck and be kind to yourself, also. Beth.

[Mick]

Jon--"Brittle" is an old term that was more descriptive than diagnostic--it simply means labile, or hard to control--Labile, in a medical context means "susceptible to rapid changes" It's really a meaningless label, and simply indicates that they can't seem to find the right combinations of diet, activity and insulin to keep his sugars stable. Certainly, summertime with a kid is way more difficult to control diabtes. I was always described as brittle myself when I was a child. I managed to get "un-brittle" later in life by being extraordinarily compulsive about every little aspect of my self-care. It worked, although for your son, he may yet just be too young, still growing (puberty is the hardest time to control glucose levels), and just too unwilling to live like a robot--and he shouldn't have to. I hope when school starts, you can stabalize his sugars.

Michael

[Jon]

Thanks for the replies! He is doing better now. He will probably stay in the hospital for another day or two, but he is already feeling better.

I can't wait for school to start back up. He has been to the ER 3 times this summer. Every time he spends a night or two away from home, his bg goes through the roof.

[michelle20]

hey how long has your son been a diabetic? I hope he is ok and I'm rooting for him to!!

[TAutry]

Jon,

Sorry to hear your son and you are having a rough time. Mick is probably right, as tough as it is on both of you now, as your boy gets older and understands better the reasons and necessities of checking his sugar and taking his shots he will level out. Until then, school is right around the corner.

Best wishes for you both!

Travis

[dcoke]

Originally posted by Jon
Thanks for the replies! He is doing better now. He will probably stay in the hospital for another day or two, but he is already feeling better.

I can't wait for school to start back up. He has been to the ER 3 times this summer. Every time he spends a night or two away from home, his bg goes through the roof.

Jon, give your son hugs plz. Gotta be hard on him. As Mick said, "Brittle" is an old term not used much anymore. What it means is, just having a hard time with glucose control. Might be rapid often highs followed by unexplained lows or too many lows then highs. basically ping-ponging around. This happening even with a balanced diet and exercise.

Yes, your son needs to pump. I belong to a pump mailing list, a woman mentioned MiniMed has a "scholership" program. perhaps call them and see what they can do to help you, if anything bypass Kaiser, they sux anyhow. :whistling

Best of luck.. and well wishes for your son.

[lgvincent]

I have brittle diabetes and I'm afraid I have a really hard time with it. I simply can't get my insulin adjusted to an exact dose. I can take say 9 units of Humalog and go into insulin shock and when I drop it to 8 units my blood sugar will run 180 or more. I'll go into insulin shock quickly and frequently will simply pass out and be unaware of it until I come out of it, sometimes hours later. I really hope your child will have a much easier time of it than I. I'm so tired of this entire mess.

[Belinda]

I too had times when I was first diagnosed that everyother week I was at the ER. It was also during puberty which reaked havoc and does for all diabetics I presume. Hope your son gets better soon and if the Dr. are dragging their feet be very persistant. Also I teach school and I don't want it to begin but hey that is what I do. Also check with the school he attends and make sure their is a nurse on site. If not there is something you can do to change that. Ask for a 504! It is the documentation that your child had a medical disability and has to have some modifications. Snacks at various times, check BG as needed etc...
Good Luck.

[Jon]

Thanks for all the good advice! Sorry I didn't respond to all of you sooner. I just moved to a new home and haven't had an internet connection for a couple of weeks.

He is doing much better. The doctor still refuses to give him a pump. She says he isn't ready. I did convince her to put him on lantus however instead of NPH. What a difference that made! Lantus is much easier to control! They didn't want him on it, but I insisted and they gave in.

[Belinda]

You realize sometimes the Doctors don't have all the right answers! I like my Drs. attitude....You know how you feel and I am your coach...try if you like and if you don't go back to the old way that made you feel better if it makes you feel better than here is a prescription for the new meds.

As for the pump see if he can try it for a trial basis I am sure they have a few spares in the office(at least mine does) and if it helps then you can state your point if not you can at least say you tried!

GOOD LUCK

[Jon]

They will not give him a pump unless he is under good control. And I don't think I can get him under good control without a pump. I can't change my insurance until next August, and I probably will then. Until then, I have to deal with what I have.

I convinced them to put him on Lantus instead of NPH, and it was working great, but they lowered his dose because his bg was dropping at night. They started him on 30 units, and he is now down to 25. His bg is always between 300 and 500 now. It will drop when he takes his Novolog shot, but when he tests a few hours later, it is back up there.

The diabetes educator lowered his dose because she said he is probably having lows, and rebounding. I don't think that is the case, but what do I know. I am just the idiot dad, and not allowed to think for myself. I couldn't possibly be able to make an informed decision without going to all of that medical school! Nevermind the fact that I have been dealing with this by myself for over 6 years now.

[Andrea]

Originally posted by Jon
The diabetes educator lowered his dose because she said he is probably having lows, and rebounding. I don't think that is the case, but what do I know. I am just the idiot dad, and not allowed to think for myself. I couldn't possibly be able to make an informed decision without going to all of that medical school! Nevermind the fact that I have been dealing with this by myself for over 6 years now.

One thing you could do in this case is to test your son's blood glucose level often. Get up in the middle of the night every day for a week and show the nurse the results. That way neither of you is guessing, you are working from actual, real numbers.

Andrea

[Belinda]

Or there is a meter that he can wear for 3 days and it checks it every 5 mins. and then they download the info. You could also ask about the 70/30 insulin which is a mix of Reg and NPH. No you are not the idiot dad but one that is concerned and wants to see results. On the lighter side when my BG is that high I don't go outside because of the bugs/insects think I am a sugar drip for them. Beware of that! it took me a while to figure out why I was always the one getting bite!

[Shalyndria]

They will not give him a pump unless he is under good control.
Whoa now that sounds backward. I thought the number one reason for a pump was to facilitate better control. In fact, my Dr wasn't sure I was gonna be able to get one because I have such tight control over my bg's and therefore the need just wasn't there. Is it your Dr's decision that is preventing it, or is it an insurance issue? Can you switch Dr's? Oh, and have you ever heard of the Dawn Phenomenon?

[Belinda]

My doctor says your A1C has to be 8 or lower before they consider putting a diabetic on a pump. As hard as it may be the every 2 hours og BG checking isn't a bad idea. Then you can see where it peaks (or the meter I mentioned above). Even if he gets a pump it doesn't mean it will be in control! But you have to look at every options.

[snydermom]

Jon - What a crock of crapola you've been handed!

The attitude you're getting from your doctors is obscene to the extreme. Talk about a Catch 22? You can't get him a pump til he's in control but be can't be in control til you get him a pump. Well, even the Idiot Dad Who Knows Nothing can see there's something wrong with this picture.

And regarding round the clock testing: 1) You get up in the middle of the night every night and pretty soon you can't function due to no sleep. Then you lose your job because you fall asleep while working which causes your insurance to be dropped. Now NOBODY will see you because you have no insurance. 2) Your son sure as tootin' ain't going to function well in school when he's being woke up every nite.

I've never understood why the medics are so defensive towards us ... they see us once every how many months for 5 minutes. In the meantime, we are the ones dealing 24/7 and see how we react to different situations. And with levels "between 400 and 500" you and your son are in the critical mode all of the time!

And as it's been said ... I'm sure your son isn't going to have an easier time of it once he hits all of the hormonal changes.

I don't have your answers (jeeze, I don't even have my own) but sometimes it's just nice to know you're not the ONLY schmucko dealing with in constantly.

Hang in there! B

[Tony]

Belinda is right. They will not consider you for the pump unless you're in good control or pretty close. Yes it does sound a little twisted.

Reason being I guess would be because the pump uses short acting insulin. And you would be more likely to have the risk for Ketoacidosis than injection. With injections you are using long acting insulin.

[Shalyndria]

Hmmm, must be different up here in Canada because my Dr was not going to put me on the pump because my control was too good. In fact, when he saw that my HbA1c was below 7, he said "I see no need". So I set him straight.

Jon, I don't know how frustrating this must be for you; I've never been the parent. And although the pump isn't a guarantee of good control, you have to try whatever is necessary in order to achieve the best results. On that note, is there some way you can put pressure on your Dr? For instance, can you go to a newspaper with a human interest story on your son, and how his control is bad, and the only way you can save him is the pump? I mean play up the sob story and make your Dr look like an inhuman idiot. Well, just an idea anyway.

[michelle20]

Thats what I would do to. I am on the pump and don't know what I would do with out it. I am also in better control from a 7.3 to a 6.0. Keep Trying!

[polymorphic]

Man, I hope your little guy gets better. I'll pray for him.

On another note, knowing about kids, (because I once was one) are you positive he is keeping on a good diet? He might not understand exactly what this disease could mean for him in the future and might be slipping sweets in behind your back. I know for a fact that I find it VVVEEERRRYYY difficult to say no to sweets now as a diabetic, and I'm a grown man...well, 28. I went from about 1 to 3 gallons of Ice Cream and about 6 12 packs of coke per week, 2 to 5 candy bars a day, Gatorade, cookies, apple juice, orange juice...to absolutely no sweets from April till now. But I was allways thin...go figure.

Perhaps you should have a long sit down with him and explain the disturbing facts and fatalities, amputations, etc. Make sure he's not lying to you about his diet when he's away from home...or even late at night in the kitchen while you're asleep. Scare him into submission, so to speak.

[lgvincent]

Boy, I once ate a dozen donuts in a day and got really sick. I don't believe I could handle that much in a week.

[Jon]

Thanks to all of you for your great advice. But I have to tell you, I have already tried all of it. I was getting up every 2 hours to test him. I have been pulling my hair out trying to figure out why his numbers won't go down. I have stopped following the DE's advice, and am making adjustments myself again, and the numbers are getting better. I am at the point now where I don't even want to go back because she will just be mad that I made changes without consulting her. But all she does is tell me that she needs more readings.

And like you said Snydermom, after 3 nights of getting up every 2 hours, I was exhausted. I took a few days off of work, and slept while he was at school. Then I got up to be at school so I could check him at lunch time to see what he was eating. The DE still wasn't happy because she wanted me to send him to bed with a normal BG reading so she could see if the Lantus dose was right. Of course, if the Lantus dose was right, he would probably be going to bed with a good reading. And still she would lower it. Now they have changed his carb ratio from 1:15 to 1:10. This causes him to have a low after eating, and then it goes right back up to the high numbers.

And to Shalyndria: I know the health care system in Canada is quite a bit different than here. I am a member of an HMO, which means that my health insurance company owns the hospitals and doctors that I am allowed to go to. It is not a very good system. My job only allows me to change my insurance companies once a year in August. I meant to change this year, but I missed the deadline. So I am stuck with the only doctor in the area who handles insulin pumps.

On top of everything else, they are harrassing me trying to get him tested for ADHD, which he clearly does not have. They think his BG is high because he is not focused enough to remember to take his shots. I wish they would just write the prescriptions and let me handle everything myself. I am sure it would be much better than it is now.

Thanks for letting me vent again!

[Shalyndria]

Hey John, quick question. By "DE" do you mean certified diabetes educator (CDE)? And is this person an RN or a physician?

[Jon]

Yes, that would be a certified diabetes educator, and she is an RN.

[Andrea]

Originally posted by Jon
But all she does is tell me that she needs more readings.


If she wants more readings, maybe you could suggest that they hook your son up to minimed's CGMS (continuous glucose monitoring system). You wear it for 3 days and at the end, you get a printout of readings for every 5 minutes for 72 hours. It may give you more hints as to what is happening during those nighttime hours.

Andrea

[dpav]

Hello Jon
Here is a background of experience. I was diabetic at 8. At that time I was taught to adjust my insulin per consistent test readings. And back then it was not a blood test. So the adjustment is to get the Lantos to take care of his daily levels to stay as normal as possible not including eating. Then the Regular or Humulog is used to take care of the food intake only. Using these separately to take care of these separate items will help to start stabilizing. You are the one who is supposed to do the adjusting. Keep a journal on food, Test readings, Insulin intake both lantus and the fast acting. See how much the exercise make a difference in the daily levels needed. You will be able to see a pattern after a few weeks. You need to take many tests. I take 12 per day. I was tired of not being in control. I also get up 3 times at night to test. I simply do the test and go back to sleep. If you get used to it, it will work. Also Any Doctor or nurses that is trying to make you only do what they say, is a major danger to your sons health. They are the reason he is not under control. Every diabetic is taught to adjust themselves even children. Again, I was 8. If they want to control everything then have them move into the house with you . If they do not want to teach how to adjust insulin injections the ADA will teach you. And you need to tell this misinformed self righteous B.. To get a life and do the job of educating, not controlling. You are doing the right thing you need to do the controlling not them. You and your son need to adjust and test and study the results each and every day. Then the Doctor is to make decisions to help you continue the learning to live llife with diabetes. Don't let anyone tell you to not learn. Keep that journal. Take as many tests as you can. Take those 2 hours after eating. Shoot to adjust the bloods sugars. Check for the amount of foods he is eating. By taking a lot of tests your son can lie all he wants to about not eating, (not saying he is) but the tests will let you know what is going on in his life. And make the adjustments. Check 2 hour later. If he stays high he will develop Keto acidosis. I have been there 6 times when I was young. I understand this lot. So avoid this. If there area ketones.Take insulin. You need to have a diabetic counselor and training in adjusting on your own and your son needs to be made the heavy. He needs to be doing the tests and writing down everything, and doing the adjustments. With you helping him it will develop into control. By the way, the insurance companies only pay for the Pump if you need help with managing blood glucose levels. So being out of control is the reason for the pump. I was almost denied because I was under too good of control

Sorry for the book. I have been with idiots like your Nurse, and control freaks. Get rid of them as soon as possible. Get in contact with Diabetic agencies. JDA. Send him to diabetic summer camp. All of these things will help him greatly.
I hope this is all helpful. Sorry I came on board so late. I did not know this board existed till recently.

a parents place http://www.childrenwithdiabetes.com/parents/

for children http://www.childrenwithdiabetes.com/kids/

more info http://www.savvyknowledge.com/educational_software/health_software/diabetes.htm

Diabetes Camp and on the pump, Look a the links for more information as well http://www.minimed.com/patientfam/pf_kt_maxmoose.shtml

Don

[Jon]

Andrea

Thanks for recommending the cgms. I have contacted mini med and asked for more info. I think that would help answer a lot of questions.

Dpav-

I always appreciate hearing from people who have been through what I am trying to deal with. I do keep a journal on what he eats, but it is difficult to keep up with. I just found out a couple of weeks ago that he has been buying sugar cookies at school during his morning recess, and not telling anybody. An assistant of the school nurse caught him. He was not taking any insulin for them, and not telling anybody what he ate. So when he went in for lunch, he would always test with high numbers. Now, all of the cafeteria workers have a picture of him, and they are instructed to not sell him anything too high in sugar unless he reports it to the office. He just won't take it seriously. He knows what he needs to do, and he knows what happens if he doesn't stay on top of it, but he is only 12, and still thinks he is invincible.

I do everything I can to educate myself and him about diabetes. We have been making adjustments on our own for a few years now. The CDE we are seeing now is not the one we have seen in the past. I don't know why they put me with different people every time I go in there.

I am all too familiar with ketoacidosis. He was in the hospital 3 times over the summer because of ketones. 2 of the times he was visiting his mom for a couple of weeks, and the other time he stayed the weekend with a friend. His mom has been educated on it already. She is type 1 herself. I was hoping that staying in the hospital would be enough to make him realize the importance of staying on top of it, but apparently it is not.

He went to diabetic summer camp a couple of summers ago, and he didn't like it. He didn't want to go this year. It did seem to make a difference in his attitude though. Maybe I will make him go next summer.

I am familiar with the childrenwithdiabetes website already, and it is a great website, but I have not heard of the other one you mentioned. I will check it out.

Thanks to both of you for your great advise.