Will it ever end??? Juvenile Diabetes

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I am sorry I have been MIA a few days, but we have had yet another crisis. After stressing about the evals ( which seem so unimportant right now) on Tuesday 22nd we felt great on Wednesday thinking about how great they went and then the world turned upside at the peds visit that evening. We took her in because she has been doing the sleepwalking 3-5 times a night and when it hit me that she was peeing every time she got up, always hungry and losing weight and thristy more than ever I thought, wow this sounds bad, but I honestly thought they might say she had some virus or infection somewhere. We have been at the Children's Hospital since then, she has juvenile diabetes and will be insulin dependent the rest of her life.

Makes me angry because I keep thinking if I didn't have to spend so much time fighting with the schools for the kids I might have caught this sooner, but I guess you can't look back.

I have read some posts and replies, and will eventually get back to answering, but I am exhausted right now and my head is spinning trying to remember everything I need to do for her.

She is doing well and is stable and home now, ( her sugar was in the 700's when we got to ER). I am so proud of this tiny girl who on Wednesday was freaking out about getting a finger prick for the first time in ages and now says "Let's do this finger now" and takes her four shots of insulin a day like a trooper. I write more when I get some rest. Until then thank you everyone who answered my other posts and we'll get back to those topics eventually,lol.

That is just unbelievable!

Oh my goodness, I just don't know what to say, I am glad that she seems to be handling it rather well, and it sounds like you are standing up under the pressure too. Oh my goodness, I guess you all just have no choice!

I wish you the best, maybe if you stress the compounding of your daughters conditions and take a firm line with them that you need help from them with her acedemics and don't have any room for anyone to drop the ball becuase you are at the end of your rope, and your daughter is under too much stress as it is you may get somewhere. Demand they come to the table with solutions and help, and if they try to give you the run around, let them know it is all nothing but a pile of double talk. (My mom went through the same thing, being told on one hand I was failing and then on the other I was a B student!) I still think the evaluations where a good idea, and keep pressing forward on that, although you may want to delay some of it until your home situation is stable, you have an August meeting with the school for her right? So you have "some" time. She can have a good life, I know you are the kind of parent who will make it so!

Oh my goodness!

I think the song 'Wind Beneath My Wings' was written about you!

I definantly list you on my 'hero' list!

If I ever win millions I will get you a lawyer to fight the schools, all the health care you need, tuitiion at good private schools, a housekeeper, and whatever else you want.

I'm thinking of you.

some days are just plain tough....you just never know what life is going to throw your way~ what matters is the way in which you handle yourself....and it sounds like you've handled the situation pretty darn well....get some rest.

Bless you. I hope you can get some rest over the next few days so that you can reload and continue the great job you are doing.

I hope she is feeling better!

Hello everyone hope all is well with you. We are doing ok. Carly(my daughter) is doing good and holding up. She has still been running high with her sugar, but they upped her bedtime insulin and I think that may have done it.......I hope. We had numbers in the 100's for the first time continuously last night. She needs to stay between 90 and 150. She is afraid of going back to school, but that's pretty normal and quite frankly I am scared to death to send her,lol. I just want to keep her right next to me forever. I am not sending her tomorrow, instead we will go up and have a meeting with the nurse and teacher to sign a bunch of forms and be sure they are properly prepared to take care of her. Maybe Wednesday.

I am exhausted still trying to keep up with all the blood level checks. They tell me this will relax some as we go, I hope so. We have to check her before and after every meal, then at bedtime, then at 12 AM and again at 3 AM. I am taking today to put everything in better order around here and get a nap maybe before my help goes back to work and school tomorrow. This has certainly thrown a monkey wrench in our usual routines causing my little guy to be so off and his behavior is just awful. He is being mean and nasty and then just crazy...so out of control, poor thing. My oldest (aspie) is making things more difficult because his birthday is coming on the 6th so he is obsessing on that and driving me crazy. It's so hard because I know he can't help it, but you just want to slap him and say,"you don't mind if I figure out how to keep your sister alive, do you". I am thinking maybe if I put him in charge of helping make the lists that I need for her food and her schedules that will help. Being tired it is hard for me to remember he really doesn't have any empathy, so I need him to at least look like he might care and doing those things will help.

I have been trying to read everything and the funny thing is, it looks like the school will have to do at least a 504 for her no matter what.....hahaha. Depending on how good I can be at this, I may be able to get some of the other things she needs written in to it. I am also not going to send her to summer school, I think it would be better for her to be at home and us to get used to this new life. If they leave her back because of it, so what;she will then get the extra help she needs. Well I am tired, but just wanted to say thank you for all your well wishes and kind words and let you know how we were doing.

carolgatto,
I just want to let you know that I've said a prayer for you. Be comforted in knowing that you have a tremendous support system out here in WP land...I know you've been there for me and I too am here for you.
Sometimes it seems like we are about to fall apart at the seams, but, eventually we learn how to live with all the stress....and bits of ramdom beauty come out in amazing ways from our children when we least expect it and it helps us to keep going.
Hang in there ! !! It'll get better.

I am sorry to hear of your new situation. I have lived with a juvenile diabetic for 35 years. In your last message you mentioned an older son. Yes, get him involved in helping you with your diabetic daughter. It is so important that he understands the warning signs of an insulin reaction.

When my son was about 12 years old, I arrived home to find him sitting on the kitchen table in front of his Dad (a diabetic). He was olding a bottle of pancake syrup and was very strongly directing his father to drink it. In fact I remember him saying "you drink this or I'll pour it down your throat". I believe my son is aspie. His father was sinking fast into a severe insulin reaction if my son did not know what to do and if I would have been late coming home we would have been at the hospital.

Even though my son does not show much empathy or appears like he doesn't care when the chips are down he pulls through. He wouldn't have been able to do that if I hadn't gotten him involved at a very early age with understanding diabetis. He was taught how to load an insulin syringe, how to test his Dad's blood sugar, how to recognize an insulin reaction.

One more quick story about my son. Several years ago we had a wild fire in our area. My son and his cousin where home alone (both about 16). When the word came to evacuate, he left the house with the dog and my husbands medicine's. His one thought was how important his Dad's medicines where....he didn't even take his computer.

Hang in there, I'm here to help if I can.

motherofalien
Thanks, that helps alot. Your stories touched my heart and gave me hope. We are all just kind of in a stupor trying to get this all together. We are still in the fine tuning stage so it is kind of scary. It's one thing to set up an insulin dose for a kid who is stuck in a hospital bed doing nothing, but now everytime she gets up to do anything she goes low. We are adjusting her carb ratios now and hopefully she'll do better. Those lows are a scary thing to see on the meter, I suppose I'll get used to it. I am training both my older boys to understand and act in a situation, but it is my 12 year old who will be the one who does it, I bet. My 16 yr old aspie is too obsessed with his birthday coming to even think of anything else. We are going to begin teaching my 12 yr old to load a syringe this weekend and give an injection. I think this one will be a doctor or a nurse, he is so compassionate,lol.

I will be happy when I feel more confident caring for her and feeding her, it's like having your first newborn again. The thing I am looking most forward to is definitely stopping the 12 am and 3 am checks, but for now sleep will be put aside to be sure she is ok.

I do appreciate your words of wisdom and everyones wonderful thoughts.

Glad to hear her sugars are coming down. I think insulin reactions are extremely scary. Even after 35 years they scare me, something you never get over. Also with her being so small and new to diabetes she is probably not able yet to tell you that she is running low. Every diabetic is different. My husband was diagnosed when he was 2 1/2 years old. My mother-in-law told me that he used to complain about his tummy she would test him (back then they only had home testing with urine strips) and it didn't always indicate it was low, but she quickly learned that if he said his tummy didn't feel right she needed to give him orange juice or anything sweet.

I know that they are making great progress with the insulin pumps. These things keep track of the carbs, test the blood sugars and inject the insulin. But probably that is down the road for you guys, but it sure does help get these kids closer to a normal life style. From what I understand they only use one type of insulin (fast acting) and it tends to keep them under better control. The ups and downs can drive you crazy.