I need someone who understands!!!

[admin]

Posted by arhines in the General Section and pasted here by admin:

My daughter (Sasha - now 15) was diagnosed at age 10 1/2. It was terrible! She already had to be held down to receive her vaccines or lab work - now she's being told that she will have to take at least 4, up to 7, shots each day.... Not cool!!!    Anyway...We made it through all of that.  now it's dealing with the teenage rollercoaster.  Teens are emotional enough - but add the responsibility of this illness to a teenagers shoulders  - seems to equal an occasional meltdown. And not just for my daughter ... me too!!!  I try so hard to be strong and i feel like i'm supposed to have all of the answers. But the fact is ...I don't.  Sometimes I feel so lost and uneducated.  One day all is according to "plan" , and then whammo!!!
We are having 450+ BGL's and pos. large keytones. I guess my point is that ...I really need someone to bounce off of.     
 
 

[gillian]

hi amy was 4yrs old when she was diagnosed with type 1,we hae gone through loads of ups and downs emotionaly.amy is 13yrs old now she has gone from 2 shots a day to 4,she often has high blood sugars and ketones,she has been in and out of hospital many times,she is been struggleing with haveing diabetes for a while now,mostly due to hormone changes and becomeing a tenn,if you need someone to bounce off please feel free to get in touch with me ,heres my email jjreardeon@btinternet.com.

[JoNell]

I have no answers for you, but I do understand.  I have two children with Diabetes - a 12 1/2 yr old boy and an 18 yr old girl.

My daughter has just completed high school and is working part-time. She is seldom home and I absolutely no control over any of her care, really. I can remind her to get poke, get shots, etc. but I have no clue what she is doing at work or when she is babysitting or out with friends.

My care reminders are seen as nagging.  When I express frustration, I'm "over-reacting".

Her last A1c was 10, whereas prior to this she has always been in the 6 - 7 range.  
Everyone looks to ME to somehow have the answers and solve the problem -- everyone except HER because she just doesn't seem to care any more.  I can only hope that she pulls it together sooner rather than later.

My son has been having some crazy numbers that I believe have two causes -- hormones and forgetting {though I'm not sure he is really forgetting....} to poke and get a shot before eating.

I have to remind them both to take proper care. I have to keep prescriptions straight -- ordering on time, getting refills as needed, remembering which need new prescriptions when.  Sometimes it is overwhelming with three different insulins to track {they both use Lantus, but she uses Humalog and he uses Novolog}, two different types of needle tips, two sizes of syringes, test strips, thyroid medication for her, lancets, glucagon........ making sure we have what they need/want for lows..... the list goes on and on.
When things don't go well, everyone looks at me.

{AND my dog has just been diagnosed with a rare condition that requires multiple pills a day, urine glucose testing, and quarterly blood tests... :-?}

I feel sometimes like I am falling down a long, dark tunnel. Everyone keeps yelling at me to get stop falling and climb out, but no one has a rope to throw me.  

So, no answers but I feel your pain.  I just keep on keepin' on.

[ihave3angelz]

Having high numbers can cause emotions to get out of control. I know when my son runs high he doesn't feel well. Adding +ketones makes it even scarier. I think getting a tighter control of the BG is first and foremost because large ketones can be the beginning of DKA. Once she's feeling better hopefully it will be easier to address the issues you are talking about. My son is 11 so we are just starting to experience "hormones" so I  understand how you're feeling. I just got off the phone with the endo myself. We were talking about the emotional side of parenting a child with diabetes and hard it is to keep everything in balance. 
Hang in there - you're doing a great job!

[sbbrowning]

Hi, and welcome to the club!

My daughter, Josie, was diagnosed with Type 1 diabetes two years ago, when she was 13.  She's just shy of 16 now, and I agree, its been a roller coaster!

What has worked for us is that Josie has taken responsibility for managing her diabetes, and I am more or less simply her support system.  She tells me when she's running low on a supply she needs, and I arrange to have the prescription refilled and pick it up.  If she tells me in a time frame that makes it difficult, I explain to her why.  I keep track of her appointments, but I never make them without asking her about her schedule, and we have a pre-appointment discussion that puts her on track for when she speaks to the endocrinologist.

I will occasionally ask her about the timing of her blood sugar checks, or the results, but I try to stand back and only "bug" her if she seems off track.  If she comments about being high or low (or shows frustration), I ask her about how she's feeling, and what she needs to do to get back to where she needs to be.  I look at websites she expresses interest in, and I show her articles I see about research, and we talk about developments in the news, but I try to take my cues off of her.

Doing this makes her feel more in control of something that basically cannot be strictly controlled.  It was hard at first - and I couldn't have done it unless she had shown that she wanted to take the lead (which may be somewhat unique) - but now she is so in tune with her body and her disease that even though she doesn't follow a strict regimen (responding instead to how she feels rather than the hour of the day), she has gotten rave reviews from her endocrinologist regarding her AC1s and staying close to her target range.  This has allowed her to move more normally through those hard, teen-age years.

However, Josie has been working with a therapist for the last year, and has been diagnosed as being clinically depressed.  This is not due to just the diabetes (she also was diagnosed with ADD last year - something that has proven just as challenging to this former-star pupil who now struggles with basic homework), but speaking with her counselor has helped her come to terms with the "unfairness" of those conditions afflicting her.  I would suggest that (if you haven't already) you find someone your daughter can talk to - someone with some kind of authority, not just a 'friend' - who can help be a sounding board away from you and your family, not only to give her someone impartial and a step apart, but also to give you some help in having someone else who your daughter can turn to when the questions get too overwhelming.

Yes, it is hard.  Yes, the tears and anger and lack of an end-point are frustrating and downright debilitating, to your daughter AND to you.  You love her, but cannot take this away from her, as much as you may wish with your entire being that you could.  So simply realize that you are there to support her, however you can, and just like with other teen-aged lashing out, stay strong, know you are helping her, even when it seems you aren't, even when it seems you're always doing something to make her mad or upset.  She needs you to be that staunch support, especially when everything else is in flux.  And don't beat yourself up.  Hang on.  Come here and express your frustration.  Let us, let her doctors, let anyone else around you support YOU.  You'll make it through.  She'll make it through.  And when she looks back at these years, she'll know that you love her.

Good luck.

[chelle]

I just wanted to say you aren't alone. I wish I had all the answers and could handle every situation with aplomb - but most of the time my shirt is untucked, my hair is out of place and my socks don't match.  And that is on a good day.  I guess I celebrate when I get the answer correct and get down on myself when I screw up and think "I should have known, anticipated or solved that one"..... I think I am my biggest critic - even though at times I am sure my daughter will disagree with this and say I am the biggest pain in the butt..... all with the territory of plain ol' motherhood, right?

It is just the one anniversary since my now 13 year old daughter was dx.  Lately it has been a roller coaster ride of lows and highs (both bg level and emotions) - the doctors keep telling us it is hormones also - which makes it more frustrating because there is another thing we can add to the list of "What I Can't Control" (wink, shmirk, shrug).  I honestly hate roller coasters, especially the feeling I get in my stomach when I am ascending or careening down the hills!

You aren't alone in the feelings and I just wanted to say there are a lot of us out there who are willing to take turns on the trampoline - so bounce away - because I am sure there will be a lot of people bouncing with you

[deb3027]

hi all.....i know just how u feel .... my 14 year old has had it 3 years now  ..4 in november,
her sugars are all over the place got the school on my back saying they are taking me to court for time lost, hospital on my back for her high hbc's,
 her moods are just awful! told me she wished me dead the other day ..told her step dad her has no right telling her anything cause he anit her dad, and yet she has been with him  since she was 2! she was taken in hospital last week and yet i have had to get a little slip to say she was ill to take to the school to "prove she was ill" i am totally fed up ...i cry most days , i feel as i cant cope with it all anymore and people just dont understand what we go through! partners are a waste of time cause they never listen to what we have to say? they think we "moan" we try so hard to keep here within the limits...7/9 here in england and yet for no reason she is bouncing of her meter..hers reads up to 37.5....
i am so just fed up i feel like getting in my car and just going and getting away from everyone and everything...i really cant cope much more with it!!
but i will so dont think i am gonna do summot stupid cause thats not what i ment ..just i feel so trapped and like a goldfish in a goldfish bowl ..i can see what is going on but cant do anything to change it??
and god i have tried!!


**** sorry sounds like i have taken over ya tread...dont mean to ..just ment to say u are not alone with feeling lost with all this ****
i hope u get through it all :-)

[Type1Mom]

Good morning! My daughter is 18 and was diagnosed at 15 in high school. That was an awful time for all of us. I understand your frustration and concern. She graduated from high school last June and is now a full-time college student and works part-time. Her last A1C was 6.7. Now that's not because she has perfect blood sugars all the time; it's because she had highs and lows and they averaged each other out. I, as a parent, have been very fortunate in the sense that when she needs my help, she asks. I have gotten involved with a parents group with the hospital and she is involved in activities with other Type 1's. When it came to shots, there was a lot of emotion and then she went to the pen and now she is on the pump. Has that been given as an option or even talked about? I truly believe the pump changed our lives. There is so much more freedom however there is still a responsibility to have with a pump. I really feel for you and want you to know that you are not alone. I see that so many people have responded to your post. I wish you the best of luck and if you would like to talk further, my email address is jjjrivera@msn.com ! Hang in there. There is such a different side to Type 1 Diabetes. I hope your daughter is able to get there too. I'm sure my daughter would talk to her too if you think that would help! Let me know and best of luck to you! p.s. Another thing is  every year that her date of diagnosis comes around (April 25) her and I celebrate with a treat! My husband doesn't understand it because he has chosen to not be involved in her care. What we are celebrating is the fact that she has lived another year without hospitalization!! I truly believe that is reason to celebrate. The diabetes is not going away but if we look at it in a different light, we have more better days and less bad!!

[mitchsmom]

Some really intense stories going on here - so sorry. My son is almost 12 and we are definately going through alot with hormones - he was diagnosed 5 years ago. Recently his numbers were much higher than usual, and he had ketones too. I work very closely with the diabetes educators, and he sees them frequently. Something that I thought was interesting and did not know, was they said if he was in pain, stressed or upset about something it could definately cause his blood sugars to rise. That can certainly apply to teens. Since we had not had trouble before with ketones either, I was told that if he had ketones for more than a day, he was to be taken to emerg. I was scared to keep giving him more and more humalog as if he was sick - but we did get it under control quickly.

I am shocked at the one poster who mentioned the hard time she is having with the school because of absence. My son has also missed alot of school (probably 40 days this school yr), but he has also had alot of problems with his tonsils (which are finally coming out in June). Surely, there must be a way for them to understand.  

[deb3027]

****quote****I am shocked at the one poster who mentioned the hard time she is having with the school because of absence. My son has also missed alot of school (probably 40 days this school yr), but he has also had alot of problems with his tonsils (which are finally coming out in June). Surely, there must be a way for them to understand.  ****

that is one of the problems with my daughter her tonsils seem to come up every 3/4 months....
they just dont seem to care and just want her at school!! our school is up for being shut very soon..( i am not hiding behind a screen and staying quite and not saying! lol) and they seem that the council etc are on them to try and get it to stay open so they are picking on every little thing and her time off is one of them..have got the hospital behind me but it dont stop it getting to me  :-(

[btynicem]

Hi. My name is Brianna. I was diagnosed with Type 1 Diabetes on September 11, 2001 when I was only 11 years old. I am now 19 years old. I just started college. I know what Sasha is going through. I had everything under control at first, but as I got older everything got harder. It is hard for me to get my blood sugars in target. I have been in the hospital many times due to these complications. If she is not already on an insulin pump, I would recommend looking into that. I also just got started on a new program that my educator showed me online. The website is www.integrateddiabetes.com. It has helped me a lot. I have had plenty of breakdowns and so has my mom. Breakdowns are inevitable. My indocrinologist also referred me to a counselor to talk about my diabetes and that helped as well. They should have a counselor that specializes in children and teens with diabetes. That might be a good option. I would definitely look into that. Well if you have any further questions or if you or Sasha would like to talk to me, please don't hesitate to email me at brianna.medaris@okstate.edu or davidsmyboytoy@aim.com. I hope everything gets better. Please email me, I would LOVE to help in any way possible.

Brianna Medaris
brianna.medaris@okstate.edu
davidsmyboytoy@aim.com

[donnaowen01]

Hi everyone, I have a step-son that has diabetes since he was 12 now he is 16. We got along until he was 15. The hormones kicked in and his mother has been giving him anything he wants. No questions asked. I signed for him to get his license with the rules intact. He started breaking the rules. We had him down to 5.5 the last doctor appointment he was 9.7. His numbers have been running in the 4 hundreds and over. He stopped taking his insulins. He is on Lantus and Humalog. In our state you can pull your consent away for the license. I did that. His mother has not said anything but her dad said he did not agree with what I did. His dad spoke up and said about his control of his diabetes. I made up my mind that I will not sign for him to get his license back. What the child said was I will do my diabetes if I get my car back and license. I said no deal. Prove yourself. I have started texting him every three hours to do what has to be done. If I see he is still not listening I will treat him like the age he is acting. We have an appointment with the doctor in September we will see how to control  this situation.

[dejahthoris]

My son was dx aug 2010 right when school started and now they are on my back for absences. I am going to pull him out. I can't stand more stress. Maybe I will try again next year. He is doing great but this is enough new stuff to learn without the school making my life hell. I dont want to home school put  there re privte schools in the area that allow homeschoolers part time. I have never been under such stress in my life.

[loppen]

It is so hard to deal with teenagers, let alone one with T1! My son is 17 years old, dx at age 9, 2 weeks before school started. I guess I was very blessed becuse we had 2 T1 teachers and 6 people trained in diabetes. We are in a public school, nurse( useless as far as t1) is only at the school once a week. I still went to school everyday for the 1st couple months after dx. I did have a problem with the school saying he was going to be a truancy issue if he missed more school. I told them we will get a 504 plan- they backed down and I have not had a problem since!
 The problem now that he is a teenager is the depression that sometimes hits him. We did go to see a CDE/therapist it helped some. I felt helpless, seeing him hurting and not knowing how to help him. We talk a lot and one thing I learned is he felt like we were upset with him when his numbers were high- like we were mad . I explained we were not mad, just want him to feel good and keep from coplications. Now we really work at the bg numbers are just numbers to help guide him. No bad #, no Good#, just #!
Of course I worry about him but I try really hard to let him be a kid. We try not to "nag" him but sometimes- like when I hear the pump alarm going off at 2 am for a no insulin in cartridge and he is sleeping thru the alarm- I get upset for his lack of responsibility.But hopefully his frontal lobe will develop (I am told by 21 it will be) and he will realize it is not nagging! In the meantime it is nice to know I am not in this alone.

[prh361]

Hello, I saw your post and thought I would reach out to you to see if you would like to talk about our daughters issues.... I THINK I UNDERSTAND!!! lol
I AM a type I diabetic and have been for the last 40+ years. I KNOW what you are going through and might be able to lend an ear for you if needed. I have been there done that as to the teen years and have some insight for both you and your child if you would like it. I can be reach via my email at: prh361@yahoo.com (Pam)

I dont mind ANYONE emailing me that would like to ask me questions based on experience!
I DO NOT HAVE a diabetic child, but thought it would be good to join to hear about all the new things going on as my 18 yr old could still end up with this "conditioon" and I would like to be aware of it all.