Parents of Children with Type 1 - Recent Threads

New to all this...

Linda — Mon, 29 Apr 2013 18:54:03 GMT

Hello all :)

I am a mom of a 12 year old boy who was diagnosed with type 1 last week. Any advice for someone just starting out? I have been reading labels like crazy and measuring/weighing EVERYTHING without a label...

He seems to be adjusting well..its me who is all stressed out. :/

Any words of wisdom for this rookie?

Changes in car sickness/heat tolerance?

Mrs. Smith — Mon, 22 Apr 2013 17:55:55 GMT

Has anyone else noticed a change in their child's tolerance to rides or heat? My son was diagnosed 1-1/2 years ago. He takes Lantus and Humalog. Before diagnosis he had absolutely no problems—neither the 8 hr road trip to Disney World or walking around the park in Florida heat in June seemed to bother him, much less any of the rides at the park (except roller coasters, those were always a no-go). Ever since his diagnosis it seems even a 20 minute trip to the grocery store can be an adventure at times. And he is ALWAYS hot now. He's constantly getting in the car from school wanting me to crank up the A/C while his sister gets in the car wearing a hoodie. Theme parks? Forget it! The rides he LOVED before DX he doesn't seem to even be able to tolerate now.

So I'm just wondering...is this common after diagnosis, or is it related to his medications somehow?

Do you treat your T1 differently than before diagnosis?

epolly — Wed, 17 Apr 2013 22:57:50 GMT

I have been told that over the past year since G's diagnosis I have started treating him differently. He's able to do things that were not allowed now. My reactions and punishments and pretty much everything has been lessened since we've been dealing with diabetes. I am going to need to try to be aware of my actions toward him. It seems as though I'm coddling him as though he is disabled. I have started to baby him. He is at an age that he needs to start taking responsibility instead of using me as a crutch or even his diabetes as a crutch.

Is anyone else doing this? Am I the only one?

Gabe is 13 years old and in 8th grade.

Struggling right now with extreme highs, and insulin intolerance.

persistent high at night

Weide — Wed, 17 Apr 2013 14:40:33 GMT

need help to this persistent high sugar at night.

my son is turning six this month. His sugar at night shoot up to over 16 every night regardless how much insulin we gave him. He is taking NPH during the day and at night, the insulin works during the day. His sugar is good at lunch and afternoon. We are not sure what caused this consistent high.

Anyone experienced somehting like that? what should we do?

thanks

Christine

Vent. Missing school. Sick.

epolly — Tue, 09 Apr 2013 20:07:47 GMT

My son has been sick for a while. He's got a bad cough, ketones ranging from moderate to trace, and blood sugars that go over 600. He's been on 30 units of Lantus for a few weeks now, They moved his insulin:carb ratio to 1:15. We seem to get a handle on the levels, then he gets symptoms of being sick again and it all starts over. I am getting more and more frustrated that he's bouncing up and down with his numbers. He has missed A LOT of school. Thanks to his 504 and wonderful wonderful teachers, that isn't as much of a situation as it could be in other districts.

He was diagnosed last year when he was 12. Now he's going through puberty and that throws off all the numbers. Insulin resistance seems to be the name of the game. I just feel like I'm fighting a losing battle. I want to be able to go back to work without constantly checking my cell phone to see if the nurse has called because they can't get his numbers under 600. Or that they can't bring his number up over 60, no matter what he drinks or eats. The nurse follows the dr orders to a t. She works with me closely. Yet, I feel ... unable to help him. You can see in his face how much this is taking out of him. He's very social, he's very good at school.

I don't really have a question, more looking to see if anyone else is going through this as well.

Toddler Potty Time!

Jennifer — Tue, 09 Apr 2013 04:18:33 GMT

Ok seriously, how do you do it? The only time he wants to go is before or after his bath. I have tried the praising, the bribing, giving prizes, aiming for the Cheerio...I get that he will need to go more because of the T1D. We tried getting him to go every 15 minutes to see if it would I guess trigger things. Few hours of that got annoying. I wanted to try just putting him in under wear and discovering that wet undies don't feel good. But we live with my mom and there's only carpet in our house. Ugh, sometimes I think if my dad were still on this earth that he'd have him trained already. Lol. I just don't know anymore. Oh and I know nighttime won't be an easy task either. But those night pull ups aren't quite as wet as they have been. If anyone has any bright ideas please share them! Thanks!!!

Lunch numbers

Jennifer — Mon, 08 Apr 2013 09:25:26 GMT

So I am curious if this happens for anyone else...Zackery is your typical happy, jolly, somewhat obnoxious four year old - with type one diabetes. Since he was diagnosed his numbers have never really been in the so called "normal" range. If I can get him to stay below 200 it's a great day. But for quite some time now his lunch time numbers are up there. The highest I've seen it go is probably just about 500. Sometimes I wonder if I have a weird kid, no matter his range of number, be he below 70 or skyrocketing he acts the same. Rarely ever any different. Anyway, at his lunch time he is 99% of the time over 300. We don't understand it and our dr doesn't seem too concerned. *btw, I've looked into pediatric endos for our area and the closest is San Antonio where we go anyway for those I've talked to before*

I just wanted to know if anyone else has gone through this or thinks I seriously need to switch drs. We have done a complete range of snacks each for one week apiece to come up with a theory and it is always the same. *the in between time after breakfast and before lunch*

Oh and just as a crazy venting parent, screw terrible twos four is where they REALLY push your buttons. Then again, his little sister is two and claims she is a Diva Princess. She plays the part very well. Lol Oh and my 7 month old *7 weeks preemie* is teething AND managed to really get a grip on this rolling thing. Lol.

I know it's Monday but I hope everyone has a good day. Little man is finally dozing. This momma is pooped. :)

I ♥ my T1D son. I wouldn't have him any other way.

It's an interesting ride :)

julebug1108 — Mon, 08 Apr 2013 01:05:33 GMT

I am new to Type 1 Diabetes. My son, Logan, was diagnosed on Thanksgiving day, after my husband and I watched him drink and drink and drink all day. We had known something was wrong, and watched him get thinner. He had less energy, and was even concerned himself about his fatigue. We ended up getting him diagnosed before he was in DKA, thank goodness. He is doing well, and still on injections while we decide about pumps. I'm thrilled to find an outlet, and I appreciate each of you for your experience and insight. You are amazing parents.

Venting

Angel — Wed, 27 Mar 2013 01:52:55 GMT

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

Cord Blood

Christine — Tue, 26 Mar 2013 02:37:40 GMT

Hi all,

Wondering people's thoughts or experiences with the latest research out there... my 3-year old will have been diagnosed for a year in May, and we have a new baby coming in June. I had never really considered paying for this new baby's cord blood to be stored but some of the pamphlets talk about how a sibling's stem cells were able to be used to "cure" some cases of Type 1 Diabetes... but I haven't found much more that seems legitimate. As a nurse, the idea of any transplanting etc. brings the huge fear and potentially bigger monster than T1D of anti-rejection drugs and different scenarios of rejection... anyway, would love some thoughts.

New Endo Group

Mom2two — Sat, 02 Mar 2013 18:28:00 GMT

We are fortunate enough to live in an area that has 2 children's hospitals. The hospital closest to us did not accept our insurance until yesterday so we had to go to the further hospital when my son was first diagnosed 2 months ago. We had our first appointment with our new team yesterday and were we surprised at the conflicting guidance! Nothing ground shaking, but enough that it surprised us. We were just really shocked at how different the schools of thought can be on how to approach glucose control. I would think with the way the medical societies set up guidelines there would be more conformity to our guidance. I realize that each person diabetes is handled differently and with a medical background I feel comfortable with decisions I need to make to address my child's diabetes...but I really feel for the family's without that background looking for guidance. I watch my husband struggle with understanding how to make adjustments and know there have to be many like him. There are many things I don't understand, too, but have been able to find some of the answers through this site.

I just want to put a blanket "Thank You!" out to those who maintain and submit to this site!!!

A Good Day

Jennifer — Fri, 01 Mar 2013 09:05:59 GMT

So yesterday we had a good day. Had our quarterly appointment yesterday in San Antonio and my lil man did awesome. I expected the same question as usual, "How do you think his A1c is doing?" And as usual I hope for the best. She told us his A1c went from 7.9 to 7.4! I mean, that is great right? Fixing to be three years since his diagnosis and we're still learning. Sometimes I feel as though we don't do enough. But you just have to start every day anew. This coming Thursday he will turn 4. Unbelieveable how time flies. Oh and I did ask about his carb restrictions, we were told that they didn't want him to gain weight. O.o His weight is perfect, right on target really. He can't help if he's short, he has two short parents. :) Anyway, we had a few places to run errands for my mom where he got his Easter gift early from BuildABear, from his nana of course. I just wanted to share. I feel like it's a small victory in a way. I always hate going to these appointments, always worried if I'm doing good with my child. Nervewracking really. But I feel good for him. A small, tiny bit of good. Thanks for letting me gush. :)

how old was your child when they got the pump?

Janet23 — Tue, 19 Feb 2013 19:15:24 GMT

hi everyone,my son is almost 3 and he was diagnosed just after his birthday last year. His dr just recommended we check out and consider the pump for him cuz he has been having overnight lows and his glucose is sometimes very high/low w out explanation. im a little nervous about it cuz he's SUPER active and I feel like he might rip it out. So im looking for some advice and personal experiences of other parents! Anyone with a CGM with any info/advice would be GREATLY appreciated too!! thanks :)

When/How do you tell them?

Jennifer — Mon, 18 Feb 2013 22:36:12 GMT

Hi, my name is Jennifer and my son is about to turn four years old. Was diagnosed at 14 months. I have been wondering, when is the right time and how do you tell your child about their diabetes? I've tried explaining it as simply as I can, but as a toddler I keep getting the question why? He's also only allowed 40 carbs per meal, including his drink which we manage pretty well, but when he's finished eating he says he's still hungry. He gets a decent sized healthy as a picky kid's meal can be and he wants more, but I can't give him more. Of course, as mom it makes me feel bad. I try my best not to eat around him sometimes when we have those days.

Some days I am at a loss at how to tell him. There was one day that broke my heart a few months ago. I was making his lunch and I can't really recall our conversation but at one point he asks me, "Momma, when are you going to fix me?" I gave him his peanut butter sandwich and went around the corner and let a few tears slip. I wish to god I could fix him. I would do anything to fix my lil man. I didn't know what to tell him. So, how do you explain to your toddler that he has type one diabetes, he can only eat what he's allowed, how do you explain carbs to him (or her)? His questions are becoming more frequent and I don't have the answers.

Thanks for any advice or help you can share. I love my T1D son. <3

Son starting kindergarten. I'm scared!!!

teameddie1 — Sat, 16 Feb 2013 01:59:48 GMT

My son will be starting kindergarten in the fall. I'm really nervous about it. Not sure if I should put him on the pump or not. He does great with his shots. Should we just stick to shots? I can't imagine having him wear a pump all the time. He just seems so little to have something connected to him all the time. We don't have a problem with his numbers. He's doing pretty well. Any suggestions?

Two year old getting first pump

Liverpooldw — Thu, 31 Jan 2013 17:06:31 GMT

My son is two years old an is getting his pump tomorrow. Is there anything you wish you would have done to prepare your child? Anything you said, especially to a young child, that made the process easier? Thanks!

Parents of 10-18yo T1 children - I NEED YOUR HELP!

Ashley — Fri, 25 Jan 2013 19:26:15 GMT

Hello!

I am a graduate student conducting research on the relationship between nutrition counseling & blood glucose control in type 1 adolescents and teens.

If you are the parent of a child between 10-18 years old with type 1 diabetes, I need you!

The link below will take you to a short survey -- it should take no more than 5 minutes and will greatly help to identify whether nutrition counseling helps children maintain their BG levels.

SURVEY: http://www.surveymonkey.com/s/QH57FGQ

If you have any questions, feel free to contact me on this site or via e-mail (msu-agilles@student.mcneese.edu).

Thank you in advance for your participation!

-Ashley

Still Feeling Overwhelmed and Guilty

jocismommy — Wed, 23 Jan 2013 04:24:52 GMT

Hello Everyone!

I'm so glad to have you all to talk to. While I have great family support and many great friends, no one truly understands unless you live the life of a parent with Type 1.

My daughter was diagnosed at age 7, almost three years ago. There is no family history of diabetes on either side and we were both shocked when she was diagnosed. I kept asking if there could be a mistake and was in complete denial, running on auto pilot. It was like bringing a new baby home, and I was terrified.

I feel like I still do what is necessary to take care of my daughter and make sure she lives the best life and takes care of her diabetes. I don't, however, let myself "think" about it. When I do, l completely break down. Thinking about her diagnosis or what she goes through everyday breaks me down. I don't let her see it, of course, but I feel so riddled with guilt. Here I'm her mom, the woman who promised to protect her from pain, and there isn't one thing I can do to take this away. I can't tell her I know how she feels, because I don't. All I can do is hold her when she cries and says she doesn't want to do this anymore. She is so amazing, so full of life, so wise beyond her years. She does everything so matter-of-fact and is so strong. I always question myself, wondering if I'm doing enough, am I doing everything right. I hate that she has to deal with all of this. I hate that she talks about all the fun memories she has, then follows them with "before I got diabetes" or "after I got diabetes." I hate that she has little calluses on her fingers and bruises on her little belly. I, like all of you, hate diabetes.

Insulin before vs after meal

Mom2two — Sat, 19 Jan 2013 01:38:07 GMT

My 8 yr old son is newly diagnosed type 1 and we were told to dose before, but I can't be sure my son will always eat the whole meal so we have been waiting until after. Is there a reason to dose before? He eats his meals so quickly...there is really only a 10 minute difference at most. (We haven't had our diabetes ed class yet...thank for the help!)

Sick Season. Blood sugar roller coaster?

epolly — Thu, 17 Jan 2013 20:38:31 GMT

Has anyone been dealing with their child's blood sugar being scary low one week and scary high the next? I'm told that this is due to the bugs that are flying around. My son is 13 and was diagnosed on February 9th of 2012. I've never had to deal with cold and flu season. Last week, his sugars were low. Sometimes getting down to the low 40s. This week he's gotten up into the 400-550 range. His ketones are nonexistent. Which makes me feel worlds better. It seems that his blood sugar goes up on its own. He can give himself insulin as a correction, but still have a spike with no food. One night it went up over 100 units with no food. I guess I need to know that other people are dealing with this. Due to the numbers, he has missed almost two weeks of school. He's only finished 3 full days of school. His teachers and school are very understanding and his 504 allows for issues such as this.

Are you going through this too?

Erica

Section 504?

brad68der1 — Mon, 19 Nov 2012 16:54:37 GMT

Has anyone needed to do a 504 plan for their child? What all is involved? Is is easy? How detailed does it have to be? Was reading about it and seems like a lot of unneccesary info. Plus it states that ALL persons involved with a childs management at school must be trained??? Just curious, if anyone has done this and did your school respond in a positive way? I dont feel that having T1D is a "disability" maybe I'm being stupid about this.

Just wondering???

When does it get easier?

KellyB — Thu, 15 Nov 2012 03:24:49 GMT

Hi everyone! My name is Kelly, my daughter was diagnosed a year ago, just 2 days after her 3rd birthday. The week leading up to her diagnosis she seemed to be comming down with a cold. She was still potty training and had a few diapers that leaked through during nap time. On the night of her Birthday, a Thursday, she was extreemly irritable, we thought WOW bIrthday overload. The next day she was sent home from daycare for vomiting and with what was suspected to be a stomach virus, it was going around.

That night my husband and I slept in the living room with her trying to keep fluids down, giving her gingerale (not knowing) and keeping a close eye on her. By the next morning she had started to keep some fluids down, I called her pediatrician at 8:30 to let them know what was going on and they said, keep an eye on her sounds like maybe the virus is making its way through, but if anything changes we are here until 2.

Shortly after that things started to change, all of a sudden her words didn't make sense and she looked off. I thougth, no i don't like this, I'm taking her to the Dr, i packed her in the car and called the pediatrician on the way. In the 10 minutes it took to get to their office, her breathing had become a bit labored and she did not look well at all. I walked in holding her, the NP came in looked at her, didn't examine her and said to me 'OK, I am going to call Winthrop and you are going to head to the ER".

On my way to the ER, still thinking that my poor baby was dehydrated and how was I going to handle them sticking an IV in her to hydrate her.

When we arrived at the ER, I ran in with her in my arms, at this point she was lathargic, barely awake and her breating was extreemly labored, all this downfall in less than 2 hours. They took us right into the pediatric ER.

EVERYDAY I THANK GOD for the attending physician that was on that day. As I walked by with her he asked the nurse to get a blood sugar. While others were already checking my daughter out and already determing they were going to need to start a line, the nurse came over with this huge hospital meter and all it would register was "CRITICAL HIGH" It was at that moment the Trauma Team arrived and I didn't know what was happening.

Before I had time to think, the Dr grabbed my with both hands and said, "It is 99% likely this is the onset of diabetes, and she will be ok".

Every Dr. in the ER was working on my little girl, trying to get an IV started, trying to get an actual Blood Sugar, she was so little and so dehydrated they were having trouble and finally the Dr went right into her vein, no asking, he needed to save her life, AND HE DID. Her blood sugar was 975.

The incredible doctors there did their jobs incredibly, at no point during our stay did I even know that my daughter was listed in gravely critical condition, I found this out later from family. They just worked dilegently to save my daughter.

We later found out that they did have her worried, they weren't sure she was going to make it, but she was a little fighter. We were told that it was likely that a virus had caused the sudden onset, though she would have developed at some point.

When all of this happened, something else in me took over, becasue I didn't really CRY until a few weeks later. I just focused on learning everything I was going to need to take care of my daughter.

And now, a year later, I ask DOES IT GET EASIER?

Some days we go through so many strips determining is this her being a 4 year old or is this a low/high? We have battles about food, I know thats normal with any 4 year old but it can't just be she'll eat when she's hungry, she needs to eat.

And you could wake up with the same #, have the same breakfast, the same insulin dose, the same activity and one day your next check will be ok and the following off the charts.

My daughter is in daycare full time, and they are wonderful about it, but sometimes its hard because eveyone else isn't watching her for symptoms like I watch her. I have educated many of their staff, but theres always the fill in. Everytime the phone rings when I'm at work and I see the daycare number my heart skips a beat.

I find it difficult sometimes to come up with meals that she will eat.

I know people say it does get easier, and maybe I am just venting a little, and for that I thank anyone who does read my whole rant. I guess I am just looking for someone who understands.

Change of clock

beckyg — Sun, 04 Nov 2012 17:14:43 GMT

Hi,

Wondering how others deal with change of clock from daylite savings time to EST? Do you find that it takes a while for the body to adjust to the time? Do you just adjust your pump clock or do you make other changes?

This morning, my son ran high because I forgot to change the pump clock. But I remember from other time changes that it took us awhile to pin down the necessary adjustments. (In our case, we are finally seeing the light at the end of the tunnel after a couple of weeks of highs and lows due to a growth spurt.)

How do you deal with this?

Becky

Struggling

djhmanderson — Fri, 02 Nov 2012 20:33:02 GMT

Hi, my name is Julie and my 12 yo daughter, Hanna, was dx Oct 15 with TD1. I am struggling to let her do the same things she did pre-dx. I don't want her to feel like this disease is punishing her more than it already is. For example, tonight she wants to go to the movies with her friends, which she has done in the past. How can I let her go now without worrying about her getting a low blood sugar and getting into trouble? Not that her BS's are all that low right now, but they have started coming down into the low 100's. Can someone please give me some advice?

Thanks!

Hurricane Sandy

beckyg — Sun, 28 Oct 2012 23:07:43 GMT

Hi,

Just sitting here panicking about the dire predictions for power outages, etc in NYC. My mind is zooming through all possible scenarios (no fridge for insulin etc, no running water, no lights, need to leave home very quickly, etc.) How do you keep calm knowing the huge responsibility you have to your child with T1 in times of crisis? I would be anxious in any case, but am working myself up in a tizzy with thoughts of my son and his many needs.