I have identical twin 8 year old boys. 12 days ago one of them was diagnosed with Type 1 diabetes. It has been extremely rough on him, me(mom), and the family. I have been on an emotional roller coaster ever since. Countless tears and anxiety. The finger pokes and day time shots are going along well finally.
However, the night time shot of Lantus hurts and stings him real bad. It is heart breaking. After 46 minutes of him saying hateful things like-"I would rather not be in this world than have Diabetes. What did I do so wrong to deserve this? I should have ate healthier." Then he switched to attacking me with his words. Saying "You are giving me DRUGS! You like giving me shots!" I finally left the room and he followed me saying he was going to die if I did not give him his shot and the police were going to come take me to jail b/c I would not give him his shot. I told him to forget it and to just go to sleep we would do it later. Ever since I have been sneaking up into his room about 45 minutes after he goes to sleep and giving him his Lantus in his buttocks. He does not wake up. Sometimes he moves and scratches after I give it to him. He knows that I do this and it does not bother him. Many nights I would like to go to sleep earlier, but I have to wait for him to sleep. Plus I am still checking his BS at 3am.
I have thought about having the other twin tested for the antibody but then I think do I want to know? Do I want to know now with everything going on? Could I handle it? I think it would completely do me in. I also have a 3 year old daughter. Any thoughts???
Our Son gives his lantus in his thigh. The rear end was a no go for him. Our Endo told us his legs were fine to do the night time shot. As for the twin thing, I don't know.
Bless your heart! All us parents here feel your pain! We have all been through our trials and tribulatons in one way or another. Please, don't let what your son says get the best of you. I KNOW it hurts, but you KNOW what you are doing is the right thing and he NEEDS to have his shots. One thing that i bought was the "Inject Ease" and OMG it has made giveing injections SOOOOOOOOOOOOO MUCH easier. My daughter use to only do her shots in her left arm. Now that we have the Inject Ease she does them all over, even in her stomach. Plus its kinda cool looking so if a girl thinks its "Cool" i'm sure a boy would think the same...
Pretty soon it will become so routine that he will be reminding you that its time for his shot or time to prick his finger. My daughter was diagnosed Dec 4, 2009 and i swear it seems like its been 2yrs instead of only 2 months. One of the best things i did was to keep her involved as much as possible and make him be in charge of something, even if its just telling you what his number is. Let him have the responsibilty of his diabetes. Also, teach him Diabetes is a part of him, he is NOT a part of Diabetes. He will soon see that his life is STILL his life. He can still eat pretty much what he wants, play with his friends and everything else he did before he was diagnosed. I actually had to stand my daughter in front of the mirror and i asked her "do you look any different than you did before you was diagnosed?" She told me "No!" so i was like OK, that shows You are still You and NOTHING is going to change who you are. Diabetes is NOT a death sentence!! It is so manageable. He can and will live a long wonderful life. He just needs to realize that things will be OK. I know you all are still getting over the shock" of all this. and that's OK! You have every right to be scared, worried, in shock at this point, but with every passing day it gets better!! ...............The main thing i have learned is i CAN'T learn everything about diabetes and you don't need to. What you need to learn is your sons diabetes. I now know i can manage my daughters diabetes with no problem, but i also know what works for her may not work for the next T1 child. And the main thing "Go with your gut!" You know your son and if you feel something is wrong or something needs to be changed then please talk with your Endo nurse or doctor.
Well best of luck and PLEASE know all of us are here to support you in any way we can!! We all vent. We all cry and in the end we all help each other through!!
I am sorry to hear about your son. Right now is a rough time for you, him, and the rest of your family. It will get easier. It is extremely emotional disease to manage too. Please know that how you are feeling is NORMAL. It is OK to be sad, or angry, or confused. It is OK to grieve. It is really important to encourage your son to talk about his feelings, and I think it is OK for our kids to see us cry. But then you need to talk with them, that you need to work thru those emotions and find ways to move on productively with your life. This happens differently for everyone. It is OK for him to be angry, but I would talk with him now to let him know that it isn't OK to take his anger out on you and that the things he said hurt your feelings (Something along the lines of "I'm not telling you this to upset you more, but what you said hurt me and that is why I walked away. I know you are angry, but it isn't OK to say hurtful things to me when I am trying to take care of you." But neither he or you did anything to cause his diabetes. (I am sure that is hard for an 8 yr old to understand!)
I would suggest talking with your endo about the Lantus stinging. My son was put on Levemir instead of Lantus because it does not sting. (Lantus has a low pH, so I was told it can feel like having vinegar or lemon juice get in a cut. Some people are more sensitive to that than others). I'd also see if a social worker or the endo has suggestions with helping him deal with his emotions around this.
I would also talk with your endo about the genetic testing of your other kids. I have a daughter who is almost 2. I haven't had her tested yet. I read somewhere or was told that an identical twin has a 50% chance of also getting T1, if the other twin has it. You daughter should probably only have a slightly higher chance than the regular population. I've decided that right now, I don't want to know about my daughter. I know what signs to look for, and knowing she has the antibodies isn't going to tell me if she will get it for sure or when she will get it. I think I have also read (and don't quote me on this) that you can still develop T1 later even if you test negative for the antibodies. So I'll deal with it, if it happens, but until then it isn't worth worrying more about. But that decision is up to you. If you are nervous about being able to handle it now, I'd advise waiting. It isn't going to hurt and you'll know when your ready.
I am glad you found Juvenation. it is a great resource for asking questions (ask anything!) and getting support from others. Hang in there.
My son is 6 and was diagnosed 10 months ago, so I have been at this a little longer than you. You are probably doing everything you can to keep it together, so I won't go in to all kinds of advice, you will get tons of that. I will offer one suggestion that seemed to work for us. We were giving Lantus shots at night too. My son would fight us like a maniac. Most of the time, I know it was because he was tired and he had already endured multiple shots already that day and he was exhausted, not only because he was an on-the-go 5 year-old at the time, but also because of the diet and newness of the disease and it's toll on the entire family. Well, I talked to the endocrinologist and we moved the Lantus shot to the morning and we have been doing that ever since. He is less likely to fight me first thing in the morning and even though the Lantus stings, he is in better spirits and doesn't hassle me as badly. He still fights the shots occassionally, but this helped with our situation. Just a thought. Good luck and there are kids books out there too if no one has mentioned it yet.
Inject Ease? I have not heard of that. I hate seeing the bruises in the back of my sons arms from the shots and the little spots on his finger tips. The sad part is that this is the beginning of an never ending road of shots etc. I get sad when I read of the complications that could come from T1. I mean is my son doomed to have foot, eye, kidney, heart, problems? Or only if he does not take care of himself. I think of the days when someone pulls up and you take off on a whim and he would have to say oh wait I have to check my BS get my meds, snacks, cooler for the meds cause it will be a hot day at the lake. You know my healthiest time of my life was when I was pregnant with my boys. I was determined to give my children a healthy start in life...
Question. My son has a class basketball game next week then starts soccer in March. Both my boys are very athletic. I am going to be nervous at the game. Do you have any suggestions? I really do not want to freak out. I find myself telling him to slow down and calm down more often. I don't understand if exercise lowers BS then why take insulin. I hope my question does not sound stupid. Remember I am still new at all this.
You will have a period of guess and check around sports. He will probably need less insulin because of them, but you have to find out what works for his body :) Generally, check BG before activity and then give him a 15 carb snack before he starts. Have him check mid way thru (or sooner if he feels low). Then check afterward and a few hours later too.
Get a copy of the book "Think Like a Pancreas" by Gary Scheiner. It is awesome, you won't feel so new after reading it.
I wouldn't freak (I know it is hard not too) about him running around. Let him, it's good for him. Plus, he's an 8 yr old boy, your telling him to slow/calm down is probably not going to do any good anyway :). You will probably have several insulin adjustments either down or up during this first few months period.
Our son is 8 and was diagnosed on 5/13/09. He had a much better time dealing with the injections when he started doing them himself. He uses the Inject Ease, which our Endo gave us. He mostly injects in his thighs and butt, he says the arms hurt too much. The Lantus does sting a bit, but it seems to be better now that we don't keep it in the refrigerator after opening. You can keep the insulin at room temperature - just don't let it freeze or go over 90 degrees - and that makes it a bit more comfortable.
Complications from T1 are NOT inevitable, they are generally caused by elevated BS levels over long periods of time. Tight control of BS is the best way to keep your son healthy for his lifetime. I know it's REALLY rough at first, and it's difficult to help your child deal with their own emotional rollercoaster at the same time you are dealing with your own. Just hang in there, try to be understanding but firm with him. Seek out counseling if you feel he or you need it.
I was told yesterday that lantus has a higher ph level and tends to sting younger kids a lot. I asked for it yesterday for my 9 yo daughter and she put her on levemir instead because its ph is lower. Also are you keeping it out of the fridge? It hurts more cold.
As for his behavior I have no clue. Are he and his brother close? Maybe you could get the other twin to help you out. When one of my boys is being difficult like that I use the other ones feelings to help me out. More or less guilt the one with how the other one would feel if he lost his twin brother. Mine are also autistic so its hard to get them to see things a certain way but being a twin they can see things from the others eyes easier than anyone elses.
I can't give you any better advice than the other parents have. I just want to say that I have the same hesitation about getting my other child tested. I was given the packet for Trial Net over a year ago and have been asked several times to participate in the screening. The thing is, I don't want to know if my youngest has the antibodies. I would feel helpless knowing that my son is going to probably have this disease and I would drive myself crazy trying to prevent it. I already get paranoid when he drinks his juice too fast or pees a little more than usual or gets a cold, etc. I have even checked his sugar.
On the subject of having siblings tested, we did have our older son (10) tested for antibodies, but have not had our youngest (5) tested yet. I let it up to our older son whether or not he wanted to have it done. I explained what the test was for, not just to see whether or not he was at risk, but also to possibly contribute to a long-term study of T1 and possibly identifying the risk factors. He wanted to participate, so we did it. Our youngest is not quite old enough yet to understand the testing, so is not really ready to make that kind of decision. And, I don't think he'll be willing to sit still long enough to have five vials of blood drawn.
BTW, our son's test came back negative - not at risk for T1. One less thing to worry about :)
As far as the testing. We did do the testing through Trial Net. Our oldest(12) was dx a year ago. We tested our younger two last summer. My youngest(9) tested postiive for two of the autoanibodies. My son was negative. It was a horrible feeling. Everytime she drinks more, sleeps more or seems moody, I wonder and worry.
That being said, what these research groups are doing could one day prevent or cure D. I look at it like we are doing our part to cure this disease. You also have to remember that just because they come up positve does not mean they will come down withD. Likewise, if they test negative dosen't mean they will not develop the autoantibodies.
It does take a toll on you if it comesup positive but from what I understand if you test positve, you can be eligiable for breakthrough drugs ect... I know Trial Net is on the cusp with several preventative drugs for those who have the autoantibodies and or who are newly dx.
I cant tell you to do it or not. I was heartbroken and devistate when we found out.
Inject Ease? I have not heard of that. I hate seeing the bruises in the back of my sons arms from the shots and the little spots on his finger tips. The sad part is that this is the beginning of an never ending road of shots etc. I get sad when I read of the complications that could come from T1. I mean is my son doomed to have foot, eye, kidney, heart, problems? Or only if he does not take care of himself. I think of the days when someone pulls up and you take off on a whim and he would have to say oh wait I have to check my BS get my meds, snacks, cooler for the meds cause it will be a hot day at the lake. You know my healthiest time of my life was when I was pregnant with my boys. I was determined to give my children a healthy start in life...
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Inject Ease is really good, but i've now found one that is even better. Its called AutoInject2. Both of them will help with the injections of the insulin. The inject Ease injects the syringe into the skin, but you still have to actually "push" the insulin in the skin. With the AutoInject2 you basically just put the insulin in the syringe and put it inside the Autoinject and it actually injects both the syringe and the insulin. I was able to find Autoinject2 on line at American Diabetic Wholesalers (they also sell the inject Ease). I have actually tried both on myself and you truly do NOT feel the injection. Both are wonderful products. I just like the AutoInject2 more just for the simple fact it also injects the insulin. check them out, i'm telling you, they are so worth the money!!
As far as the testing. We did do the testing through Trial Net. Our oldest(12) was dx a year ago. We tested our younger two last summer. My youngest(9) tested postiive for two of the autoanibodies. My son was negative. It was a horrible feeling. Everytime she drinks more, sleeps more or seems moody, I wonder and worry.
That being said, what these research groups are doing could one day prevent or cure D. I look at it like we are doing our part to cure this disease. You also have to remember that just because they come up positve does not mean they will come down withD. Likewise, if they test negative dosen't mean they will not develop the autoantibodies.
It does take a toll on you if it comesup positive but from what I understand if you test positve, you can be eligiable for breakthrough drugs ect... I know Trial Net is on the cusp with several preventative drugs for those who have the autoantibodies and or who are newly dx.
I cant tell you to do it or not. I was heartbroken and devistate when we found out.
KIm
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Thank you for sharing this. I'm going to be bold and ask; If you could go back in time, would you do it again?
Our oldest (10) is enrolled in the Panda Program here in the Atlanta area. If a sibling tests positive for antibodies, they will be re-tested every three months to see if T1 has been triggered. There are clinical trials now in progress that are testing drugs/treatments to stop the autoimmune process that leads to T1, and testing treatments that will extend the "honeymoon" period indefinitely. So, a positive on this type of testing does not necessarily mean a child will develope full-blown case of T1. And, every bit of information gathered on this disease brings us one step closer to early diagnosis, preventions, and cures. If our oldest had tested positive for risk, we would be pursuing every avenue possible to slow or stop the development of T1. Knowledge/information is power. Just my opinion :)
Inject Ease is really good, but i've now found one that is even better. Its called AutoInject2. Both of them will help with the injections of the insulin. The inject Ease injects the syringe into the skin, but you still have to actually "push" the insulin in the skin. With the AutoInject2 you basically just put the insulin in the syringe and put it inside the Autoinject and it actually injects both the syringe and the insulin. I was able to find Autoinject2 on line at American Diabetic Wholesalers (they also sell the inject Ease). I have actually tried both on myself and you truly do NOT feel the injection. Both are wonderful products. I just like the AutoInject2 more just for the simple fact it also injects the insulin. check them out, i'm telling you, they are so worth the money!!
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Does the AutoInject2 do a "slow" injection? We've been told it's really important to take at least 10 seconds to inject, expecially with the Lantus. Otherwise, you can get "leakage" and the entire dose of insulin is not absorbed.
After thinking about it a bit. I guess I would say I am about 80% sure I would do it again. It has been about 8 months since the inital test and I have had time to accept it. She has gone through Phase II and her pancreas is working fine, at this time. It is real stressful for awile when you first get the test back so if anyone thinks it would be too difficult, I would think hard about it. On the release forms it does state that emotional stress can come from the results, and that is very true.
However, I hope with the research our kids kids won't have to go through D. I know Trial Net is one of the leaders in prevention.
I have three children two have type 1 diabetes. I had the testing done through trial net. I am glad I did that is how my daughter was diag. with T1. Her diagnosis was so different my son spent time in the hospital because he was so sick. Lexi had no signs of type 1 but was positive for the antibodies. She didn't have to stay in the hospital we were able to get her BG down. The scary thing was when we did check her BG it was over 600 so we feel very lucky to have known she was at risk for T1. She had her well check right before the diag. came everything was fine her weight height development nothing showed anything to worry about. That is why this disease is so different you can show no outward signs but be on the verge of DKA or hypoglycemia. My youngest son tested positive for three of the antibodies he is now in the other phase of the research. I think it is hard either way to test or not. No matter what I think we wonder if anyone else in the family will get it and now I know my youngest more than likely will have it I wonder how much longer does he have. I don't think there is a right or wrong answer just what ever you think works out best for your family. I hope this helped in someway.
I am an identical twin, so this subject is interesting to me. As a volunteer for the JDRF Online Diabetes Support Team, I have seen this question before and have done some research on it. In the cases of identical twins, the genes are identical. It is thought that type 1 diabetics carry damaged genes, and of course both twins would carry the genes. However, according to statistics, only in 50 percent of the cases of twins do both twins become diabetic. The reason is that even if we carry the damaged genes that cause us to have a faulty immune system, this does not automatically make us diabetic. So the odds are 50 percent that the twin won't catch a virus that happens to trigger his immune system in such a way that it goes after the pancreas to cause diabetes. I know you will be curious, so I will tell you that both my twin and I are type 1 diabetics. I thought you would find the statistics helpful.