My 8 year old son was diagnosed on June 16th. To say it has been crazy would be the understatement of the century. I have been very hesitant to reach out to any group, chat on any network, or blog through various support sites because i simply do not want to accept this. What is so disorienting is how seemingly unfazed he is, while i am broken and brittle to the world. Is this normal? He has made very little fuss about the needles, diet, or whatnot. On one occasion, he declared (with a true matter-of-fact tone) that being sick sucks. ??? i am bracing for a real sense of sorrow and anger or pity, but NO. It makes me feel as though i am the one blowing this out of proportion. Certainly i am not. Or am i?
Hi Christina, It sounds like your son is quite the hero. What an amazing little guy to have such a great attitude towards type 1. It is not an easy disease. Our little guy was diagnosed at 20 months and I vividly remember the first several months. No way are you blowing this out of proportion - it is almost like a grieving process is best I can explain how I felt. It is for a life that has been changed forever and will never be like it was before. Ashton is almost six years old now, so it has been fours years with diabetes. All I can say is how very lucky you are that your son is dealing so well. Ashton was also a huge trooper and has taught me so much about joy, acceptance, patience, and everything that is really in important if life. Please feel free to contact me anytime.. if you want to vent, scream or just need advice. IT IS ALL NORMAL feelings that you are experiencing. It does get better! It becomes second nature afer a while.
Christina--I'm 26 years old and was diagnosed over the July 4th weekend, so I know what you mean by crazy. I can feel for your son when he says it sucks. It does suck to realize that you can't eat the same way you did before and that you constantly have to watch yourself. I'm not on an insulin pump, so it's been really hard to test and give myself insulin when I'm out, but it gets better everyday.
Obviously I'm not a parent dealing with this, so I can't totally relate, but I do know that my parents felt it harder than I did. I want to tell you what I told them, yes, having type 1 sucks, but knowing what I have and being able to control it is so much better than how sick I felt before and it's so much better than having a disease that you can't control and don't know when or if it will come back. As long as I take care of myself, I can have a normal and healthy life.
Give yourself time and don't attack yourself for feeling the way you do. It's normal. Let yourself really feel all your emotions and then shut that door and accept that this is your son's new reality--and it isn't that bad. Each day gets better. And as long as you control yourself you can control diabetes. Soon, it will just be something that he has, it's definitely NOT who he is!
I would urge you to reach out to your local jdrf chapter. They are a great support system and have a lot of resources--especially for families.
Please keep reaching out and it will get better.
Thank you, Ladies. Since his diagnosis, we have been to a bevy of specialists for further ailments and medicine. Yet again, he is so casual about it...."are we going to another doctor? o. okay." "can i take my new medicine by myself?" "do you want me to help remember the appointment date?" As though it were any other day, any other NORMAL day. This morning i walked him to school for his first day. We checked his blood sugars before he went in, and of course they were high. I wanted, in an instant, to grab him and run! i wanted to panic and go home and keep him safe in my magic bubble. HE grabbed a bottle of water, started chugging, and swore that as soon as he could, he would check for ketones. Kisses and hugs, and just like that he left. Wow. He has such an amazing ability to adapt and accept. i just hope that it rubs off on us all. With time, this abnormal cataclysmic tornado will settle down and IT will become the new normal. I get that...i'm just hoping to make it that long!
Wow. What an amazing little man you have. I remember when Ashton started preschool. I stayed all day for the first day to make sure everyone knew how to take care of him, They kicked me out on day two. So I drove around the corner and just sat in the car for awhile. Kind of funny looking back on it now. So I completely understand wanting to keep them in the "magic bubble". Be sure and do things for yourself!
It sounds like he is a great little guy - you are very lucky. Are you on shots or a pump? We have a pump - so when Ashton goes high we can administer small doses of insulin. We love it!!
We are still on injections. It has been so unstable. He was 819 when he was diagnosed and they think he had been running high for a while, so we had been struggling to get out of the 2 and 300's the first weeks. Then 4 weeks in, he drops to 23 at Diabetes camp (mind you, he was running around like a nut), and the next day he was so low they couldn't get a reading on 4 different meters! Then an hour later all the glucose tablets and juice they had to pump into him put him at 490. So we are on an absolute diet of 45g carbs at an absolute allotted time with an absolute unknown amount of insulin since it chances weekly. We are looking for the magic ratio that will stabilize him...I am more than aware it does not exist, but you can't blame a mother for being ever hopeful and truly delusional.
Everyone deals with the emotions of diabetes differently. What you are doing and what your son is doing is totally normal. Just make sure your son knows he can always come to you when he wants to talk about it.
Diabetes is a big deal to any kid. Some kids are just more expressive than others. I was diagnosed when I was 4 and did okay until my teen years, then I rebelled, skipped shots, lied about testing and was basically a mess. My experience is pretty common, though I know some diabetic teens don't rebel at all. It wasn't until I was in my mid-20's that I grew up a little and realized I'd feel better if I didn't ignore my diabetes. By the time I was 30 I felt real peace with have the disease. Not something I would have chosen, but diabetes is a defining part of me that has brought both good and bad things into my life.
Now I'm middle aged and a wife and mom. This of course gives me extra incentive to take care of myself. I want to see my son grow up and hope to retire and take care of my grandchildren when the time comes.
This book list has a bunch of good resources, including a few books that deal with the emotional part of diabetes. I really recommend you try to find a diabetes summer camp for your son. I've always loved camp and it was cool to be with other diabetic kids without it being so forced, like in the ADA family support groups. At camp you backpack, ride horse, go out in canoes, and test and shoot up along the way.
When the time is right for a pump you'll probably do much better than with shots. Because they only use short acting insulin you have the freedom to skip meals, eat big, and correct a slight high.
Take care and just hang in there. Don't expect anyone except a type 1 or the parent of a type 1 to understand what life is like with diabetes. They just can't. Like any other adversity though, it is a chance for your family to support each other and work together as a team. It will also test your limits and bring out a strength of character that probably wouldn't be there otherwise.
Take care. -Jenna
That was perfect, Jenna. Thank you. I love that you have a first hand perspective. I am certainly understanding more and more that everything is ever evolving. His diabetes, his personal courage, our family's strength. We are moving along at a snail's pace, but I don't really mind. It offers more time to get my feet back under me and to appreciate each day a little more.
It sounds like you're doing really well. My mom and I both agreed that we're sort of glad I was diagnosed back in the 70's, before glucose meters and pumps existed. I took one shot of long acting insulin a day and was told not to eat any sugar. =) For anyone diagnosed these days you must feel like you're on the fast track to getting a PhD in diabetes.
Another poster on this site, Richard, has had type 1 for over 60 years. He recently shared about his experience taking part in the Joslin 50-year Medalist research study, which had hundreds of people who are complication-free after 50+ years with diabetes. I thought it was cool and consider myself a "medalist in training.
Take care. -Jenna
Wow. You were on a roller coaster at camp! That was quite a rebound effect from a low when he shot up to 490. Those lows do happen unfortunately. We taught Ashton to really pay attention to how he is feeling.... dizzy, tired, shaky etc. and he has learned to catch his lows (at least most of the time). Course we had to reward him at first because he didn't want to stop playing. Boys will be boys. But he now gets it and will ask for juice when he starts to feel like he is coming down. He will drink a few ounces and is off again.
You will somewhat stabilize your son or at least keep him in a good range most of the time. The one thing I have learned in the past few years is that the parents or mainly "Mom" will best know how to deal with a childs diabetes. Every child with type one is different. Food, insulin, activity all affect blood levels in various ways - so each child is unique. Our endo told us this at first and she was right. It took many months, but I started to see how different foods, water intake, etc. affected levels. Your son will not be on such a strict schedule forever. Just take it day by day! :)
What type of insulin is he on? We used lantus and humalog by injections for the first year.
He is on Novalog and Lantus. He was really all over the place during and after camp and when we went to our first follow-up, they mentioned 'honey-mooning'. So we backed off quite a bit on our Lantus, and even more so on the Novalog/ carb ratio. It seems like he uses almost none. Of course, I have been avidly reading up on everything so I know that this can be a calm before the storm. The endocrinologist stated that it could be weeks or months or more that he thrives on so little insulin. Finger's crossed we get a bit of time out it. I don't want anything more tedious right now...I still have other children to fret over. So is the life of a parent!
SO how is is it going Christina? We went to school today to meet with the nurse and go over Ashton's care for kindergarten. Yikes... this is going to be a big step. I thought about you and your son starting school this week and wondered how things were. And how are you? Me - having a glass a wine this evening and writing out a school plan.
well, Lani, his sugars are EVERYWHERE! super super high in the morning (i figured they would be with the excitement and stress) and then phone calls in the afternoon from the school nurse to pick him up since he crashed to 40. !!!! i am going to lose my hair. you know what i didn't think about? his blood meter readings. he is keeping one meter at school and one meter here, but i was going to send in sugar results to the endo and realized i'm missing his school ones...i was going to wait until the end of the week, but that pestering 'husband' guy around here wants to rotate meters daily! if zach comes home everyday with it, we are going to lose the thing! how should i handle the great meter debate of '11?
P.S. if you have any extra wine, send it my way! :)
The meter solution for us is using only "one meter" but having a backup one at preshcool that always stays there in case the main one fails. We download the info directly off the meter to the PC every week along with the pump data. I highly suggest you get a pump as soon as you can. They help so much in regulating those damn (excuse me) highs and lows. You can adjust the basal and give little tweeks to correct highs. For example, most kids are high in the morning (growth hormones are the culprits then) so we adjust his basal (background insulin a little higher abouts 630am...then he has great levels in the mid-morning. Lots of tricks to use with the pump. Also we use SPIbelts that Ashton wears around his waist to hold his pump and sometimes his meter. But mostly it is in a mini backpack with all his supplies and he has been military trained (literally) to always remember it. Course he has been at preschool - so it is different. I live in Reno, NV and the endo here has most kids on a pump the first month - even infants and toddlers.
If Zachs levels are good in the morning -then levels are more likely to be good through the day. That has been our experience. Can I ask how much lantus is is taking and what time of day? and carb ratios? I am not a dr but can give you another opinion you want.
he starts off in the morning anywhere between 90-120. they lowered the Lantus at night to 4 units. his unit to carb ratios are: 1:45g in the a.m., 2:45g at lunch, and 3:45g at dinner. his sliding scale was 'corrected' for school to 200-249 = +1, 250-299 = +2, and anything over 300 = +3. i may have to ask that he bring his meter home with him daily...but he is 8 so i can see hiccups in THAT plan. my husband has created a data server base for his input that automatically formats 7 day reports, determines current A1C's, and emails with a click to the endocrinologist. Now he is establishing it's own secured website to allow access to the nurse and the specialist. finger's crossed it works. so far, it is easy enough for zach to use. The endo keeps saying "when Zach transitions to a pump, of course it's FAR too soon to consider that, it will be different." Now Zach will tell me he doesn't want one because it's 'too early, mom. i'm scared!' one step at a time, right?
Hi Christina, By looking at his ratio's for bolues it looks like his levels go higher in the afternoon and evening, is that right? It also looks like his correction is 1unit for 50 points. I would need to see his BGs and what times he is testing to really see how this is working for him, But, this is what we did: test him before breakfast and then again 2 1/2 hours later. We have found that that is how long the novalog is in his system. His level after 2 1/2 hours should be close to what it was before breakfast. The unit to carb ratio is correct if that is the case. If he is either lower or higher than the before breakfast you need to adjust the insulin. But I know that is hard when you are giving injections..so you may have to either increase or decrease his carb intake. Do the same thing for lunch and dinner - making sure you test around 2 1/2 hours later. You can figure out pretty quick if those ratio's are working for him. How are his levels at night? He is starting off at a great level in the morning. Wow! that is very cool that your husband is creating a spreadsheet. You guys would be great with a pump! Perhaps Zach can see what Nick Jonas wears...that breaks my heart that he is scared. It is an adjustment at first to have a pump, but so much easier in the long run. Here is my email: email@example.com Also on the corrections, the same method works....say he is 250 and you give him a correction of 1 1/2 units - 2 1/2 hours later he would be 150 meaning that correction ratio is close. Course he can't have anything to eat during that time. If this all sounds too confusing - tell me. I do yoga. :) and take it one day at a time. All we can do is learn and try to do our best right?
um, you sound like a genius. reviewing his readings, he needs more insulin in the a.m. and a little less for lunch since he always seems to bottom when he arrives home. it should be 2:45grams in the morning, and 1: 45grams for lunch. i don' know...ugh. there is sooooo much to learn! it IS absolutely confusing. whatever helps alleviate the anxiety and stress, i am all for trying! at this point, i am strongly considering a substance abuse option....NOT! i tend to turn to humor to deflate the bubble of babble that runs through my head! fingers crossed no one get's eaten throughout this ordeal. i've been watching an awful lot of National Geographic lately, and i'm feeling inclined to devour one of my offspring. hmmm....i wonder which one of my monkey boys would taste best? heehee!
You're a crack up Christina. Humor is so much better than going into the fetal postion and crying! (joking)
You guys will get it. For some wierd reason, I became a master in diabetes in a short time. Wasn't my goal in life or even on my radar, but here I am - a panacreas brain. Not sure if that is a good thing or not.
Hi. How are you doing? We are getting ready and meeting school nurses, etc. - Ashton is starting kindergarden next week. The clinical aid wants him to calculate and administer his own insulin. Geez - he is only five years old - I don't think so. I hope Zack is doing better. I think you of and your family and having been sending good thoughts your way!!!!