New to the Type 1 since 1/19/07

[Thoover]

I have been reading and reading alot of posts. My daughter Brittney was just diagnosed with Type 1 the hard way 1-19-07. What we thought was the stomach virus turned out to be a nightmare. Her blood sugar levels were over 900 and they said that If I hadn't gotten her into the ER she might not be around today. So Im a little bit more protective of her NOW.. The question that I had is we are still doing the 2a.m. check on her and her level was at 40. She didn't miss a meal nor was the insulin amount wrong. She takes 6 units of Lantus at bedtime. We got it under controll within 10 min but this is so scary and all so new I couldnt sleep after that, I was up checking to see if she was breathing. Has anyone been through this? Hopefully someone can shed some light on this. I have a doctors appoint tomorrow for her. I am doing better with all of this but you just can't believe it could happen to your little one or anyone of your loved ones. Thanks for any input anyone can give me.
Tracy
From Maryland

[Kirsten]

Tracy,

A lot of parents of kids with D do middle of the night checks routinely. There are so many variables that affect blood sugar that you ca never be 100% sure even years after diagnosis that you won't have an unexpected low in the middle of the night. It IS scary. Almost 2 years after diagnosis, I am very rarely able to sleep soundly.

You may be starting to see a drop in your daughter's insulin usage because of the "honeymoon" phase of the disease. When the acute emergency is over and her body has recovered somewhat her remaining beta cells may start to produce insulin. Unfortunately, this is not predictable. Not everyone has a honeymoon and the length of the honeymoon varies from weeks to years.

Welcome to the forum.:cwds:We've all been where you are now.

Kirsten

[mischloss]

Hi Tracy and Welcome...sorry though that you had to find this site the hardway, as we all have. But the gals and guys a great on this site and someone will always answer you pretty quickly. It will help if you let us know how old your daughter is and the type of insulin she is on. You said Lantus and I am assuming Humalog for meals?

40 is very low of course at night. Our doc. used to tell us that a bedtime snack was necessary to keep blood sugars at a safe level during the night. We usually had a glass of milk without any coverage of insulin. The fat and protein within the milk would make digestion slow and the sugars in the milk would keep blood levels around 120.

Also in the coming weeks you daughter might start her "honeymoon" phase. This is when the pancreas tries very hard to keep making what little insulin it still can until the beta cells completely die off. During the honeymoon phase since her body is still producing insulin, the doctor might actually lower her Lantus dosage or Humalog for carb ratio. For example, when our son came out of the hospital his carb to insulin ratio was 1:15 (1 unit for each 15 carbs) however, during the honeymoon phase he was going too low when we did the math right for his carbs. The doctor kept ajusting upwards, (1:20, 1:25) eventually he was up to 1:40 per meal. This phase lasted about 6-8 months and then gradually his needs for insulin began to increase again and then stabalized. Now he uses 1 unit for 20 carbs and it seems to be working fine.

My advice is to keep calling your endo for updates and be sure to let them know her post meal blood results (usually taken 2 hours post meal). This will alert your doctor to any changes that still need to be made in her dosages.

Yes, I would continue with the nightly blood checks until you see some stable night numbers.

If you need anything else, just post it and we will try to respond quickly.

:cwds:

[Thoover]

Thanks for the update however her normal ranges in the morning are around 90 to 100 which is good, lunch is 160's and dinner is 350's. Her doc set her insulin to 1/2 unit for every 10 carbs for breakfast since lunch time was higher than normal, which Im sure they will adjust the lunch time level to get her dinner levels lower as well.

Thanks, again for letting me know its nothing that I have done wrong, I just worry cause I almost lost her once and I WILL not let that happen again. She is 8 years old and was use to all the candy and junk food which she doesnt get anymore.

You all are really great here on these boards!!!!

[selketine]

Tracy,

I'm in Maryland - Rockville - where are you?
There are some good local resources I can point you to if you're in the Washington, DC suburbs.

She can eat the exact same thing every day and never have quite the same result. You eventually come to expect that to some extent. The longer the diabetes goes on (and the honeymoon part is over - if she is having that) the better you get at guessing what might happen when she eats certain foods and so forth.

I highly recommend looking into a pump and learning about it - many of us consider it the most flexible way of giving insulin. The CWD conferences are great (next annual Friends for Life conference is coming up July 2007 at Disneyworld in Orlando). I highly recommend going if you can. Lots of activities for her with her peer group (diabetic kids and siblings) and lots of good info for you.

[zimbie45]

HI tracy

You have gotten some great advcie so far. not to much to add. except i truely understand how you feel.. as do many of us here. I am glad that you found us here.. the next few months things will be very overwhelming... But i can promise it will get better.... And any time you have questions please feel free to ask.. most of us are very quick in responding and have great suggestions.. and at least one of has has been there done that for just about any situation...

[Thoover]

Thanks again all of you for this information. I wanted to make sure I wasn't doing anything wrong. Which I knew I wasn't and they did explain to us about the HOneymoon at Johns Hopkins while we were there for 5 days. I just thank god every day she alive and still with me.

Skelketin, I live in Laurel Maryland. I will look into the Disney thing, she would love that and so would her younger Brother Nick who will be 4 next month. I have mentioned the pump to her and she is like OH MY GOSH no way, Id rather do the needles. Which she is giving herself her Insulin shot. She has the NovoJunior pen, she loves it, she thinks its cool. Im just glad she is adjusting well to it all, cause we all know some little girls can be such the drama queens..

[hold48398]

Hi Tracy,

Welcome. I am sorry you are here with us. It is so scary, we all know it too well. The best thing you can do is check BGs often and write everything down, so you can learn from the everyday numbers and experiences. Little by little. The main focus right now is to find a new rhythm and to prevent another emergency of sorts. The rest will come in time. I highly recommend that you build a close relationship with your daughter's endocrinologist and that you talk lots and lots! You should never hesitate to call for questions, even at night when you feel it is urgent. That's what they are paid to do!!

Welcome again...and hang in there!! Btw, how old is your daughter?

[rmccully2000]

She takes 6 units of Lantus at bedtime.
Tracy
From Maryland


Tracy,
Lantus take about 6 hours to plateau to its full strength. We used to give Lantus at dinnertime and this would always cause a drop of 150 - 200 points at night.

Talk to the endo about switching to morning. I wish we had done it from the beginning and deal with the drop while awake, then in the middle of the night. If you give Lantus at breakfast, the plateau (peak) will hit around lunchtime... better than 2 am by any means!!

Sorry you have to be here but welcome all the same!
Becky Mom to Mason 6

[Thoover]

Oh I have called the Endo all the time.. They are really nice and Highly recommended around here.

My daughter Brittney is 8 years old. This was the first time she went low to 40 in the middle of the night. I think I will be checking her even when the doctor tells me we don't have to.. I think it will be just a piece of mind for me to make sure she is OK..

I write everything down since we were in the hospital. We have a log book with the carbs she eats. We also keep a log book of what she eats every day, Breakfast, lunch and dinner. Her snacks have to be under 15 carbs. But I have noticed that she get's very hungry around 8 pm. Its like she just wants to eat and eat, Do you all have that with your children? She is one that use to not eat very much now she finishes her entire meal...

Thank you ALL OF YOU, you are so helpfull and great to talk to for support...

[Haley'sMom]

I am so sorry to hear of you daughter's diagnosis. I know everything is very new, it's new for us too, we are only in this 8 months, but I wanted to tell you that my daughter is also 8 years old and is using the Minimed pump. She loves it. She can eat what she wants and sleep in when she wants. I know it doesn't sound like a great idea to your daughter right now, but if she would ever want to talk to Haley, I am sure Haley would tell her how much she loves the pump. Just a thought.

[Thoover]

I will ask the Endo tomorow at Britt's Appt. Its at 2:00. The pump is the one that stays in for 3 days right?? I will read into that a little more. While we were waiting to be transported from one hospital to another the nurse was telling me about the pump. They did tell us it would be about 6 months till she could start the pump since they are still playing with the amounts of insulin. She handles this better than I am. But the day she almost passed, seems like years ago. It doesnt even seem real.

When did she get on the pump recently??

[Haley'sMom]

Haley started on Dec 19th. And, yes, we change it every 2 - 3 days. Take your time, read about it. But, if your daughter decides that she might be interested, I am sure that Haley would talk to her. I know it's a lot to get used to. Life will go back to being normal, just not the same normal as it was prior to D. It's a different kind of normal.

[Thoover]

Thank you I know Britt would love to talk to another girl her age with the same thing. I will read up on the pump it looks so much easier, but then again its only taken Britt a couple of weeks and she is doing the shots herself in her belly. I do the lantus shot cause that one goes in the bum. Her legs are too skinny to give her any shots. The hubby tried once and it bruised her and bled.. The Endo from Johns Hopkins called me and I explained and she said Ohhh Poor Britt she has no meet on those legs of hers. She is tall and skinny..

However her brother isn't use to me not having any candy in the house. How does your son cope with Haley having to controll what she eats? Does she get to have so many carbs at Breakfast, Lunch and Dinner?? Do you have him eating the same things as her? My son is use to grabbing a pack of Gushers fruit chews and I won't have them in the house cause it hurts her feelings if he is eating something that she can't have. That is the hardest part right now cause she just wants to be a kid..

[Haley'sMom]

When Haley was on shots, she was limited to 60 carbs at meals and 15 - 30g snacks three times a day. And, yes, it was very difficult when Patrick wanted a snack at a non snack time for Haley. I have been very honest with Haley and have explained what could happen over time if we do not control her blood sugars. And, I actually started to ask her if it was okay if Patrick could have fruit snacks or candy or whatever he wanted at the time and most times she would agree that he could and be okay with it. But, that was an issue, especially for me as a mom, trying to not punish Patrick, but also be fair to Haley. With the pump, that isn't really an issue any longer.

[Thoover]

So I read on the Minimed Pump online that it test the sugar as well as gives the insulin? I requested information on that and while I see the Endo tomorrow I will ask her if she has any information on it also. I have to stop by the little store on the way home so my son can get a candy bar. And Im like hurry up eat it eat so Sissy doesnt get mad.. HA HA.. He was there at the hospital when I took her to the ER and he knows how sick she was, and She knows that she almost died that is how sick she was, she knows that..

So with this pump that Haley has she can eat what she wants.. Of course she can't indulge on the candy like any normal kid could. Do you still have to count the carbs etc..

Sorry for all these questions!!

[Haley'sMom]

The pump itself doesn't test her blood sugar. It's a separate system called the CGMS (continuous glucose monitoring system). Haley does not that have, although some children on this site do. I don't believe it's covered by insurance, unless your child has hypoglycemic unawareness. Haley still tests her finger every time she wants to eat. Haley does eat pretty much what she wants, within reason. Before she eats, she tests her blood, puts her blood sugar reading into the pump, then puts the carb count into her pump. Based on the insulin to carb ratio that we enter in, the pump gives her the correct amount of insulin that her body needs.

Don't be sorry. I have asked every question that you are asking. We all have.

[piratelight]

Sorry about your daughter's diagnosis. Our son is also 8 and he is on a pump. We love the pump. His pump has a meter that attaches to it and sends the information to the pump when he does a test. We do have to count carbs but Hunter can have anything that his sisters have as long as we know, test and bolus for it. That is just one of the things that we love about a pump. Even before he was pumping we fit treats, candy etc into his meals.

[Thoover]

That is awsome.. However last night we went out to dinner for the first time in weeks since all this happened to Britt, and we were talking about the pump and she was like oh my god there is no way.. I told her sweetheart you are giving yourself your own shot in your belly its nothing different. But if she hears that she can have a tad bit more carbs oh she would be all for it.

I am so glad I have found someone like you to talk me through this. You can only read so many books and read so many articles online and try to understand.

I ordered an information packet on the pump and I will see her Dr. tomorrow. This weekend will be her first Birthday party while being diagnosed with diabetes. This should be interesting..

How did you know Haley had Diabetes?? Was she sick like Britt. It just amazes me that this can come on and not knowing the signs you think its the flu until its well above 900. All the doctors were very nice cause I couldnt believe I didnt know.. I guess we all go through this emotional roller coaster.

[jeep_bluetj]

But I have noticed that she get's very hungry around 8 pm. Its like she just wants to eat and eat, Do you all have that with your children? She is one that use to not eat very much now she finishes her entire meal...

This is not abnormal, your endo likely said "she'll be hungry...". Without insulin, tbe body is essentially being starved. So once you start putting insulin back in, everything starts to get back in a better balance. So she'll be really hungry.

I 2nd the "move the lantus to am" comment. It's generally easier to handle the initial peak/plateau/butte at 2pm than 2am.

Don't worry too much about specific therapies just yet, you've got a bit to learn. Learn as much about D as you can. The pink panther book is a must (You may have been given it in the hospital). "Pumping Insulin" and "Think Like a Pancreas" are also good. And ask questions here. My advice is worth what you paid for it, but the other folks; they know what they're talking about. :)

[Thoover]

Yes while I was staying in Britt's room after she got out ot the PICU for two days I read the pink panther book. I read a few books the first night till I couldnt read anymore I was so exhausted. I do tell you what, those doctors give you ALOT of information while you are staying at the hospital.

I will talk to the Dr. tomorrow about moving the Lantus to the morning too. Thank you all for all of the information. Now I have alot of questions to talk to her doctor about tomorrow.

You all are so great.. THANK YOU SO MUCH for all the information on the pumps and answering my questions. A book can't answer you back. But all the books I have read were great alot of info. Thanks guys.. I will let you know how tomorrow goes. I know they will up the insulin at lunch since her dinner time readings are in the 300's.

I am so glad I found this site!!

[Haley'sMom]

First off, good luck tomorrow and go with as many questions as you can. I still go into appts with lists of things that I want to cover. As for Haley, she went for her 8 year old well visit and they did a urine test and found sugar in her urine, from there we went for a blood test, we were at the hospital that evening. She was not sick at all. Her b/s at diagnosis was 351. We were very lucky, we caught it very early.

Hang in there! I am not sure if it ever gets easier, but it does become more routine.

[Thoover]

That is a good way of putting it. "It becomes more of a routine". I like that..
one. I will let you know how it goes. Have a good night, and thanks again for all the information and answering of a ton of questions that I had.

Talk to you tomorrow afternoon or Thursday I will post.

[beckybuckley]

Welcome to the lives of some of the most sleep deprived parents around! Seems like we'll go a few weeks of not having to check and then things change and I'll check her at different times in the night. My dd is only 3 and is now on the pump, but even before pump she wasn't taking any background insulin. She's starting to come out of her honeymoon phase (i think) so our nighttime checks have started again as I try to work out what her basal rate should be.

Good luck to you --- and sorry you had the need to find us. But this forum has most definitely helped me in so many ways. Emotionally, I don't feel so alone and you'll find that most of your questions and issues have been dealt with by other parents as well. I've really learned a lot from these people - they're wonderful!

[Mama Belle]

Tracy -

I'm late responding to this (we are having a sick day today and I've been a bit busy), but I wanted to respond. First of all, welcome! Second of all, sorry there was a need to find this place. Everyone here seems really great and very helpful.

My daughter is eight as well and is on injections (she receives anywhere from 4-7 shots per day). She was diagnosed when she was four and we caught it early so she didn't get as sick as Brittney. I'm sorry you had to go through that, I am sure it was scary. I want to say a few things about the pump. I know there are a lot of people in this thread suggesting that the pump is a great therapy, and they are right, it is. But, it will only be a successful therapy if your daughter is on board. This doesn't mean you have to talk her into it right now or bribe her into giving it a try. The best thing you can do is let her know that it is out there and make her aware of some of the benfits.

It took us almost five years to get to the point where my daughter was ready to finally give the pump a shot (no pun intended). She is getting ready for the pump and should start in April. Over time she has recognized that the pump will allow her more flexibility without all of the pokes. But she had to get to that point on her own. I educated her about the positive aspects of the pump (and yes, the negatives too). And I told her that when she was ready, we would take that step with her.

I know there is a lot of information for you to take in right now and I know you are aware of all of the adjustments that your daughter is making too. It is good to let her know there is an option besides injections, but it sounds like she's okay with the shots for right now. She'll probably come around with a little bit of time and experience. For now she has enough to deal with and get used to. I wish you guys the best and look forward to hearing updates!

[kel4han]

Welcome THoover!! You have found the greatest place for a parent to be. Everyone here is very supportive and helpful. You will learn so much here. I know you mentioned no more candy in your house, we keep candy for lows, especially fruit snacks. (not the whole packet typically) Chocolate is a better choice than say sweet tarts since (for us) we dont spike as high or as quickly. You will be amazed how yummy sugar free pudding is! Hope you find some new favorite foods so your little girl isn't feeling deprived of some sweet stuff!!

[Thoover]

Thank you all so much for the information. My mother actually made her this low carb custard which Britt really liked. It was only about 2 grams of carbs.. I tried it and it wasn't bad. I do have candy in the house but that is stashed away in the cabinets because Nickolas my 3 year old is a candy machine. He loves the stuff..Don't they all though

I will let you all know how the appointment goes today.

I let Britt takes this one day at a time. If she is comfortable then I am too with her decission. She has really grown up since she was diagnosed.

My neighbor bought her a cook book for children with diabetes so we will try some of those out.

Thanks again for all the suppport this really is the best place to be for us parents talking to other people who have gone through this.. Thanks again,

[mischloss]

Hi Tracy!

My son is 11.5 and on the pump. Started about 4 months ago. There are definitely pros and cons about it and it does take dedication to make it work. When it is done right, it is wonderful.

As far as sweets and candy....try to have some Sugar Free Jello Pudding or Jello-Jello :D on hand. My son loves the taste of the creamy chocolate pudding and it has like a tiny amount of carbs (9 I think?). Great snack that your little boy can enjoy with big sis and not feel deprived.

My son's favorite cookie is the Mint Milano's so don't feel bad! But he bolus for it and it is definitely a treat and not an everyday thing.

My son said NO WAY JOSE to the pump when he first was diagnosed as well. Didn't want to "look" different wearing this contraption. But then the 4-6 shots a day got old and it was cool to have this gadget...he really loved the presentation at the American Diabetes Association Expo one year. The sales rep actually was wearing one and my son wanted to sign up and get one right then and there. :D He didn't quite understand that he had to go through some months of insurance and doctor's appt.'s to get on it. But that pretty much made up his mind. The girls incidentally "bling" it up like a fashion item. You can get some cute pump pouches and carrying cases for it. My son, being a boy, just sticks it in his pants pocket. No one ever notices! And that's the way he likes it.

Good luck and keep posting your questions. We are all here for you Tracy!

[Thoover]

Oh yeah if she see's that she can dress that pump up with the bling she will think its so cool. Heck she thinks her Novopen Junior is the coolest thing. I leave it up to her, whatever she is comfortable with doing is fine with me.

Im also trying to get her to ask the doctors that she has questions. She said Yes I do have one question about my Valentines party at school can I eat the cupcakes..

Im getting ready to head on out of work and get the girl some lunch then off to the doctors. This is her second appointment of many I take it..

[mischloss]

Tracy, you can "google" pump accessories or pump pouches and see some of the nice ones out there. Show you daughter.

Also, for my son, the cool thing is patches that you can place around the infusion set site (the "bandaid" part that goes on the skin for pumping!). They come in all kinds of colors and "themes" and it dresses up the site on the body so that it doesn't look so "hospital like." He just loves it!

here is the site for that...

http://www.groovypatches.com/

: )

[mischloss]

...oh and yeah, she can have a cupcake, just need to find out if they are store bought vs. home made...how many total carbs they might be and then take the appropriate insulin shot for it. : )

[Thoover]

Thanks for the site. We went to the Endo yesterday and they upped her insulin at Breakfast and dinner to 1 unit for every 15 carbs. She is doing well. There was so much stuff about the pumps in the office, Brittney was looking at them. Then this little girl came in with her new pump they were going to try out and she was screaming. Brittney looked at me and Said OH NO I AM NOT getting the PUMP...LOL.. I was laughing at her cause her big brown eyes got really BIG.. The doctors appointment went well though. I felt really good with all the questions I asked and Britt asked her some too.

Thanks for all the information you gave me. I appreciate all of you..

[Brandon's Momma]

I have been reading and reading alot of posts. My daughter Brittney was just diagnosed with Type 1 the hard way 1-19-07. What we thought was the stomach virus turned out to be a nightmare. Her blood sugar levels were over 900 and they said that If I hadn't gotten her into the ER she might not be around today. So Im a little bit more protective of her NOW.. The question that I had is we are still doing the 2a.m. check on her and her level was at 40. She didn't miss a meal nor was the insulin amount wrong. She takes 6 units of Lantus at bedtime. We got it under controll within 10 min but this is so scary and all so new I couldnt sleep after that, I was up checking to see if she was breathing. Has anyone been through this? Hopefully someone can shed some light on this. I have a doctors appoint tomorrow for her. I am doing better with all of this but you just can't believe it could happen to your little one or anyone of your loved ones. Thanks for any input anyone can give me.
Tracy
From Maryland
Welcome! I'm glad you have found this forum, everyone here is wonderful and they all have been through some hard times. Fortunately, there's always someone here to listen and give advise when you're feeling a little overwhelmed. They've helped me out alot by just reading their postings. When my son Brandon was diagnosed with Type 1 at 18 months old, it was tough times. He was originally put on Lantus and Humalog. The doses the doctor had first ordered were doing alright, until the "honeymoon phase" kicked in and then he was experiencing lows. I would correct the low with food and then I would have to give him a correction shot to stop the high. It was up and down for awhile, but the Doctor didn't want to mess with the unit doses until the honeymoon phase was over. I had to keep a close eye on his blood sugar at least every two hours and at bedtime I had to make sure his blood sugar count was at least 250, otherwise he would go low through the night. Finally, we played around with the doses and found the ones that worked for him. He still has some highs and some low's, but it's more stable and I'm more comfortable on what to do and how to handle it either way it may go. He is 4 now and doing much better all around. Besides the Type 1 Diabetes, he's an extremely healthy and active little boy. I hope I haven't scared you in anyway by sharing my story. I just wanted you to know that you're not alone and this could be a little of what you might go through. Everybody body is different and what might happen to one, may not happen your child or visa-vera. Good luck and stay strong! We're here for you if you may need us.

[Thoover]

Nothing at this point can scare me at all. I have been through the almost losing my daughter. That was a NIGHTMARE... We are just hanging in there, still doing alot of reading and we have a grip on it. She is still having lows at night and her breakfast reading. 50's. I think I will split the lantus over the weekend 1/2 in the morning and 1/2 in the evening see how that does. I want to make sure she is in my site for the 3 days we test that out. Like her Endo said its like a yo you she will go up and down...

Thank you ALL for all of your information I appreciate every one of you!!

[Brandon's Momma]

When I brought my son to the ER one morning, after sitting there 6 hours, they told me he just had a virus and sent me home with nothing, no tests, no meds, nothing. I brought him home and later that night, around midnight, I brought him back to that same ER because he was still throwing up everything, and now breathing funny, and his lips were starting to turn purple. When we went in, I demanded that they draw his blood and run somes tests. Next thing I know there is about ten different doctors and nurses surrounding my child hooking up monitors and IV's in him. His Blood Sugar count was 1500, yes 1500! They transported him out to the nearest children's ICU within 30 minutes and he had to stay there for almost 5 days. They said if I hadn't brought him back in that night, he would have probably slipped into a sugar coma in his sleep and died. So, I know what you mean when you say you almost lost your child once and that you're going to do everything in your power to stop it from happening again. God bless you and your precious one. Feel free to email me directly at jessica@gtsincorp.com with any questions and/or concerns you might want to ask or share, I'm very open to everything.

Respectfully,

Jessica

[MrsBadshoe]

Welcome... sorry you had to join us. Glad things are going ok for your dd while you all adjust to your new normal. My second child was DX at age 7 she went on the pump about a year later and loves it...your dd might warm up to the idea.

Also, we are headed to WDW in July for the FFL convention it should be wonderful. This will be our first.

As far as food goes. Your DD can eat anything that any other kid eats. She doesn't have to have a special diet. My guess is that cookbook is for kids that have Type 2 D; which really is a totally different disease. While you need to monitor what she eats more there is no reason to cut things totally out. My house is still full of all the junk and candy we had before D LOL...Also, you will find that candy(especially skittles and starburst) are great to bring up a low.

Good Luck.

PS I grew up in PG county....