Venting

I just need to vent and there doesn't seem to be anybody who cares or understands! My son was dx March 2011 he is 12 now, and recently switched from injections to a pump. We had a few hiccups with the pump at first getting adjusted and everything, but we now have a handle on it and his numbers have been so much better since we switched, but recently he has been giving me issues on his site changes. He only wants to do his arms and no where else. He has done his stomach a few times, but a couple weeks ago when he was going to do is stomach he flinched and it didn't go in all the way and it hurt so now he has himself all freaked out. We have spent endless hours and crying over this and I am starting to get frustrated.

I told him we are going to go back to multiple injectionsand a more strick schedule if he doesn't get over this. It took us almost 2 years to convince him that the pump would be the best thing for him, and so far it has been. I would hate to have to go back, but I am just so frustrated right now! I hate this disease!! I know this is just another bump in the road and it to shall pass, but I just have to let it out!

 

Thanks for listening

Hi Angel! My son is 10 and was diagnosed with T1D on March 21st 2012, so we are just a year in. About 6 months in, my son decided he wanted to go on the pump. I went back and forth with the idea as we were just getting used to the injections and such. However, this is his disease, so I wanted him to be able to have some control over how he deals with it. Anyway, I got him the pump and he did use it. It was great, it did all the things it was supposed to do. Only 1 shot every three days for site changes, better control on numbers, could control his lows better after soccer as I could suspend the insulin as needed. However, I noticed that my son's frame of mind was not the same. He started to become more emotional, started to not want to do the site changes, only wanted to use his arms as well. He just started going downhill so to speak. One day he had a melt down before school, just very very upset. The only thing I could think to do was to remove the pump. My son was telling me that diabetes was always there, he couldn't get away from it, even when he was thinking about other stuff, diabetes was there. So I took the pump off of him right then and told him that from now on, he would only be diabetic for 20 minutes out of the day. That is when we finger poke or give an injection. The rest of the time you are like everyone else. It seemed to help him, not wearing the pump. It was most likely way too soon for us to let him have one. As he was still dealing with the shock of having the disease, actually we are still in shock.

Although having the pump was easier for me, it wasn't best for him. I still have the pump, it sits in my T1D shelf in the kitchen. I told him that we can revisit the pump when he gets older. I know that it frustrating dealing with this disease, however, it is so much more frustrating for our children. Maybe your son just isn't ready to be tethered to a machine that is going to remind him every second, of every day that he is T1D. Although the pump may be the best thing for the numbers and keeping tighter control and making things seem easier, it may just not be the best thing for your son. I know it wasn't for mine. So now we just inject with the pen and thats what works for us. I hope you find whats going to work best for you and your son. Let me know how it goes. I hate this disease too.

Hi Angel, one more thing. One of the other ladies posted the below link. If you have some free time its worth a look. Maybe you and your son could watch it together, I watched it and loved it.

www.childrenwithdiabetes.com/.../JoeS2.htm

He says he really likes the pump and once it is in he doesn't seem to mind it. We both some time tend to forget about it until it needs changed. When he was first diagnosed he wouldn't do injections in his belly, but finally after months of crying, bribing and fighting he finally did it. Same thing with doing the Lantius in his leg for his night time shot, but as time went on it got easier for him.

He really has a hard time with it altogether he doesn't like being different and he doesn't  like to talk  about it. He is going to Diabetes Camp in July and I am hoping that being around a group of kids that are all the same as him will help him a little with his struggles.

I appreciate your advise, and thank you for taking the time to listen to me rant!

Thanks for the link to, I actually got to see Joe at our local Children's Hospital in Pittsburgh. He was a guest speaker. He is really very good.

I undertand your frustration.  It took some time to convince our son to try the pump and he did agree.  The pump is great until it is time for a site change.  He will only allow me to use the backs of his arms and his buttocks.  He has never tried a site in his stomach.  He also does not like to talk about his diabetes, often times is uncooperative when it is time for a blood sugar check and he doesn't like his friends to see what he does.   Our son also has extreme difficulty learning math and so, on top of dealing with blood sugar fluctuations that are sometimes out of control, he has to deal with academic issues.  We just have to remember that God is with us and turn to him for help.

His preferences aren't rational, but it may be a way for him to seek control over a situation he doesn't like.  That's pretty typical for someone his age.  Try to lighten up a little.  If only using arms isn't causing problems I wouldn't stress about it.  

I started using the pump as an adult and didn't try any sites except my stomach for the first 8 years, even though my stomach tissue was overused.  I didn't try new sites until I had absolutely no choice.  One thing that helped me try other areas was to give myself an out.  My rule was that I'd try a new site for an hour and if I hated it I could redo it somewhere else.  The unexpected benefit of using new sites was that it allowed some of my favorites on my stomach to recover and be usable again.

I still hate site changes too.  I'm a Christian so I pray for the site to not be painful.  Then I usually turn on the TV or listen to music (for distraction) and take a deep breath and put the new site in.  Do whatever you can for your son to make it as relaxing as possible.

This article is a couple years old, but really captures the challenges of managing diabetes with someone in his/her teens.  It may help you and your son.  

www.diabetesmine.com/.../teens-with-diabete.html

I thank you all for your input and support! I have never been much for religion, but lately I have been praying and asking for gods guidance.

It makes me feel better to just let it out sometimes!

I thank you all for your input and support! I have never been much for religion, but lately I have been praying and asking for gods guidance.

It makes me feel better to just let it out sometimes!

Thanks Angel! I hear you on the venting this. Im glad to hear he is going to camp, my son leaves for camp June 5th. Your son is going to LOVE it! Oh, and so so so so cool you got to see Joe! I hope he makes his way to Phx sometime so my son and I can go! He just blew me away!! Good luck, keep in touch!

I would love to send my son to camp. However, since we can't regulate his blood sugar now, we decided not take the chance of it still being wacky and didn't sign him up. I didn't want to take the spot of someone who really needed it. I hope to get him in next year though. I think it would be really really good for him.

Send your son to camp epolly!  

Most diabetic summer camps have diabetes doctors and nurses who volunteer to oversee the kids.  I had terrible control some of my years at camp and still went and had a great time... frankly my control was usually better at camp because I had 24/7 medical supervision and I didn't blow off my testing and shots because everyone was doing it at camp, just as a normal part of the day.

Getting to meet other people with diabetes is great, but camp is also just fun!  Any child with diabetes should go to camp.  It will be good for your child and for you to get a break.

Take care. -Jenna

Angel my son is 10 and he went on the pump about 9 months ago.  At first all he wanted to do was his arms and he did that for about a month, we tried getting him to do it in his stomach or leg but he thought it would hurt too much so he wouldn't do it.  Then we went to the Dr and they encouraged him to try another spot, they didn't force or judge him.  We came home and the next time he changed the site he did it in his stomach no problem was amazed it didn't hurt.  So then he switched back and forth.  Then went back to Drs and then started his legs although we have had problems there because his veins are so close to the surface that it is hard to find a good spot there.  So then with a little more encouragement from the Drs he tried the lower back and again was amazed at how it didn't hurt.  And I just found out that there are longer tubing so he can go back to rotating it in his arms because we have shorter tubing and they kept coming out of his arms.  And I'm not judging just advising that maybe when he gets all freaked out about a certain spot switch to another one and then go back to that problem area.  And I have heard in general that teens are usually more rebellious about Diabetes and the care it takes, so I'm not looking forward to the teen years.  Does your son go to a Diabetes camp or any function where there are other teens  that are his age?  My son went to camp last year for the first time and that is where he got the idea of having a pump bc so many kids there had one.  And I volunteered there and actually learned quite a bit myself.  Maybe talking with other teens or being around them getting ideas from them would help out too.  Just an idea.  Hope all goes well.

Angel my son is 10 and he went on the pump about 9 months ago.  At first all he wanted to do was his arms and he did that for about a month, we tried getting him to do it in his stomach or leg but he thought it would hurt too much so he wouldn't do it.  Then we went to the Dr and they encouraged him to try another spot, they didn't force or judge him.  We came home and the next time he changed the site he did it in his stomach no problem was amazed it didn't hurt.  So then he switched back and forth.  Then went back to Drs and then started his legs although we have had problems there because his veins are so close to the surface that it is hard to find a good spot there.  So then with a little more encouragement from the Drs he tried the lower back and again was amazed at how it didn't hurt.  And I just found out that there are longer tubing so he can go back to rotating it in his arms because we have shorter tubing and they kept coming out of his arms.  And I'm not judging just advising that maybe when he gets all freaked out about a certain spot switch to another one and then go back to that problem area.  And I have heard in general that teens are usually more rebellious about Diabetes and the care it takes, so I'm not looking forward to the teen years.  Does your son go to a Diabetes camp or any function where there are other teens  that are his age?  My son went to camp last year for the first time and that is where he got the idea of having a pump bc so many kids there had one.  And I volunteered there and actually learned quite a bit myself.  Maybe talking with other teens or being around them getting ideas from them would help out too.  Just an idea.  Hope all goes well.  And it is nice to be able to come here and vent to other people who know what you go through with Diabetes.

Epolly I'm not sure what the camp is like that your sons will go to.  But the one my son goes to the Dr said that alot of the kids coming to camp had crazy #, amounts of carbs they ate or took alot of insulin.  And our camp can handle lots of kids but currently only get about 30 -60 a session.  I was a staff member the last 2 years and it really is a great experience for most kids.  For one they get to do all the things that kids get to do at any other camp only there are staff that are trained in Diabetes care and always has a Dr or highly qualified nurse there at all times. I don't know if your camp only excepts a certain amount of kids  but don't think that your son doesn't need it anymore than someone else the earlier the better I think.  I met kids at the camp that have been going there 5-10 years and seeing the friendships that they have with other is great.  They usually keep in touch during the year but can't wait to see everyone at camp.  At our camp teens get to go for 2 weeks and I know my son can't wait until he can go for 2 weeks.  If your camp is anything like our camp I'm sure your son will love it.  Good Luck

Epolly I'm not sure what the camp is like that your sons will go to.  But the one my son goes to the Dr said that alot of the kids coming to camp had crazy #, amounts of carbs they ate or took alot of insulin.  And our camp can handle lots of kids but currently only get about 30 -60 a session.  I was a staff member the last 2 years and it really is a great experience for most kids.  For one they get to do all the things that kids get to do at any other camp only there are staff that are trained in Diabetes care and always has a Dr or highly qualified nurse there at all times. I don't know if your camp only excepts a certain amount of kids  but don't think that your son doesn't need it anymore than someone else the earlier the better I think.  I met kids at the camp that have been going there 5-10 years and seeing the friendships that they have with other is great.  They usually keep in touch during the year but can't wait to see everyone at camp.  At our camp teens get to go for 2 weeks and I know my son can't wait until he can go for 2 weeks.  If your camp is anything like our camp I'm sure your son will love it.  Good Luck

I totally agree Jenna my son absolutly loves going to camp and I volunteer and get to help other kids with there Diabetes  my son can't wait until he can go for 2 weeks