12-06-2012 09:31 PM
Oh boy, what a crazy few weeks. My 3 year old was diagnosed with type 1 two days before thanksgiving. Luckily she wasn't in DKA and we caught it very very early, BUT since her diagnosis I have been very uncomfortable with everything. I wasn't as sad and as shocked as I had expected I would be if something like this ever happened, but she shows no signs or symptoms, she has no complaints and it really seems like the only way we know she has it is because someone told us she does. Her blood sugars are all over the place, wild swings of bg of 330 at 4:15pm and 45 minutes late she is at 90bg. So we test again and get 97bg withing 30 seconds, wash hands, test again within a minute and get a bg of 85, we even tried the control liquid just to make sure. Are these 'crazy' fluctuations normal? I have been asking the docs repeatedly about insulin adjustments and trying carb counting but they don't seem concerned. Also, since her diagnosis, she has had no appetite, whereas before, we naver had a problem with her eating habits. Is this normal for a new onset in perhaps a honeymoon phase. Should I be concerned that perhaps she was misdiagnosed? I know that is wishful thinking, but I dont want to miss something more concerning. I am so lost, confused and scared. Since she is so young she doesn't understand, and doesn't communicate to us any symptoms, that is if she even knows. Any advice would be terrific
Thanks so much
12-07-2012 11:30 AM
I can't imagine having one that young being diagnosed. I do know that there are others that post on here with young children. Are you using a pediatric endocrinologist or just a pediatrican? If you aren't using the ped. endo. I recommend that you do so. Blood sugars do normally differ from reading to reading.
Keep in touch.
Lisa, mom to Stephen dx 07/11/06 (15 1/2)
12-07-2012 01:32 PM
What a difficult time for all of you. Can I ask you to tell us what happened when your child was diagnosed? What tests were done and who gave you this diagnosis? Was it a pediatric endocrinologist? Were blood tests run and what were they? Hoping for all the best for you. You really need a pediatric endocrinologists office to help you through all this. Especially with a 3 year old. We go to a large university hospital and they are great. We can reach someone 24x7. In the beginning I spoke with them one sometimes 2 times a day. Take care.
12-07-2012 03:48 PM
Hi Pretty Pea,
Definately sound like early diagnosed D in you description. For a non D person the body can get insulin in the blood stream to pretty well match the food absorbtion. It can also turn it off quick enough to prevent lows, so usually you range around 100 +/- 30 points or less. With D you can't get enough insulin to cover the food as its digested, so the BG goes up, this revs up the pancreas even more and eventually it finally gets enough out there to bring the BG down and then usually even a little bit more. Bascially the pancreas gets behind and finally catches up, + a little more. What you describe is pretty much classic.
Honestly, when first diagnosed it seems so overwhelming, but I promise that as time goes on you will be comfortable and come to believe that this is a pain in the neck, but a very livable pain in the neck and in the grand scheme "not that bad".
Good Luck and God Bless,
Katie diagnosed T1 July 2008, pumping with Animas Ping since June 2009.
12-07-2012 03:53 PM
I noticed an increase in fluid intake by my daughter for a few weeks leading up to her diagnosis. She started having potty accidents a lot after being trained and dry for nearly 8 months even when we cut down on fluid she still had uncontrolled accidents. Otherwise, I noticed nothing strange, and still, even after her diagnosis and treatment has begun, see no symptoms or warning signs. Today she read 55bg and was still functioning perfectly normal with no real symptoms. Just 2 hours before she was at 284bg, it really seems like there is no rhyme or reason and the insulin seems to work and then not work....Anyway, I took her into the pediatrician because I thought she might have a bladder infection, in the back of my head I had always wondered if she was diabetic because, she could drink water to no end. They ran a BG test at the office and their meter maxed out at 400 and so they said that she was type one and to go to childrens hospital. We checked in, they drew her blood and put her on an IV for fluids. she was at 414 when we checked in and high 100's when we were discharged 5 hours later. Negitive DKA. elevated A1c...although I still don't quite understand what that means (9%ish) The next morning we went to a day long class and educational appointment at the Barbara Davis center for diabetes, so she is working with specialists, to my understanding this is a great facility and they do do a lot of research there. Everyone there only focuses on and treats diabetes. HOWEVER, as a mom and as she is only three I am scared. I feel like I am flying bling anf I don't understand a lot of this. She is so little that she can't communicate things to me, I am terrified of laying her down at night, after a long day of BG's all over the place and she crash and seize or worse. Not having it controlled bothers me and it seems like the doc's aren't worried, but I feel like this should be looked at more closely. Should the BG's be all over the place like they are, after 2 weeks there should be some small control right?
12-07-2012 04:18 PM
Not having it controlled bothers me and it seems like the doc's aren't worried, but I feel like this should be looked at more closely. Should the BG's be all over the place like they are, after 2 weeks there should be some small control right?
Of course it would be nice if blood glucose stayed in range, but "should" is just sort of a fantasy right now. I have heard other parents say that their doctors have given them a goal range, and then turned right around and said that if they stay within that range 75% of the time, they are doing well.
You are fighting three things right now.
- You are still learning right now. I don't mean just learned the process, but also getting used to the way it actually plays out.
- Your daughter's diabetes was caught early. While her numbers were certainly high, her pancreas is almost certainly still making some insulin. It may be producing it in uneven spurts, making it hard to guess what might happen next, and the amount of insulin it produces will gradually be less and less.
- At the very same time, she, like a lot of other kids, will probably go into a honeymoon period. Once a person is getting insulin from the outside, the pancreas may not be so overwhelmed, and it may actually do better at producing insulin for a while.
Yes, I know, those last two points sound like direct opposites. It's a tug of war, going back and forth. The two sides aren't necessarily in synch, so there can be a lot of seesawing back and forth from high to low and back instead of steady pressure from both sides.
The best you can do right now is to be observant, and handle all those ups and downs as they come along. The fact that they are there doesn't reflect at all on your skill in caring for your daugher. Eventually things will settle down some, but as one of our long-time members always says in her signature, the only thing constant about diabetes is change.
12-13-2012 07:43 AM
"After 2 weeks there should be some control, right?"
Right now you have a lot of variables that make control challenging - new diagnosis, young age, varying eating and exercise, and probably a honeymoon period which means her body is still making some insulin (inconsistently).
Bg meters allow not 100% accurate - it is considered acceptable (by non- diabetics, clearly) for there to be 15-20% variation. so a reading of 97 or 85 would statistically be the same, but it is always good to recheck any surprise reading, or any high bg for which you are about to take insulin.
Another factor might be that the body can release glucose in response to a low bg -
Her appetite may have decreased in direct relation to being treated. if you are already giving insulin based on how many carbs she is eating, some parents find it easier to dose AFTER a meal. I find I am hungry with either a low blood sugar OR a high one,
Diagnosed Type 1 at age 16 months, over 45 years now
Minimed pump and cgm since July '09. Metformin (insulin resistance), levothyroxine(thyroid), losartan (BP)
I have traveled cross country, and to Canada, UK, Kenya, Mexico, Jamaica, Equador/Galapagos islands, and lived in Egypt for a year.
12-13-2012 12:29 PM
Hi. I am so sorry that you are going through this; although my daughter was 5 when she was diagnosed (she's 8 now), I have still not had a full night's sleep. It is hard to describe the fear that we feel. The fluctuations are sometwhat normal.....eventually, you will come to a point when they balance out somewhat. I wish I could say that it will get "easy", but for me one thing gets easier, and another part gets harder. I wish that there was a cure!
Hang in there.
01-04-2013 04:21 PM
I can understand what you are going thru, but it will get easier. My daughter was diagnosed with T1 at 2-1/2. She had the increase in fluid intake and the potty accidents. At the time we thought nothing of it. The day she became unresponsive and we rushed her to the ER was the worst day of my life. We thought we were going to loose her. We do not know what her number was because they could not get a reading, was apparently too high. My daughter just turned six in december. Every day is a struggle, especially with one so young. It was mind numbing for us to be thrown into a situation we knew nothing about. There is a fast and steep learning curve not only for you but it is important that everyone who comes in contact or spends time with your daughter learn too. Always afraid of doing something wrong. So many questions bouncing around in ur head. Hang in there
01-04-2013 09:36 PM
Granddaughter, age 7, was diagnosed in September. We are still making insulin adjustments and her BG levels are up and down. She doesn't have clear symptoms of a low either. Even saying all that, treating the diabetes is easier now than even a month ago. We chart everything and look for patterns. She probably gets poked a little more often but until she starts having clear signs of lows we would rather be safe than sorry. It also takes the support of many-one of my "jobs" is to do the research and reading. The Pink Panther book is a wonderful resource as is the American Diabetes site. We have also gotten information and support from the Juvinile Diabetes Foundation.
hang in there, it does get easier.
CEMT diagnosed Sept. 2012 Type 1 age 7