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Those that caught the diabetes very early...

Discussion in 'Parents of Children with Type 1' started by TrishaP23, Jul 3, 2011.

  1. TrishaP23

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    Can you tell me a bit about your experience, please.

    I'm interested in your answers to these questions and anything else you may want to share.

    What made you suspicious?

    What kinds of numbers was your child getting at first?

    Did your child have good fasting and pre-meal numbers early on?

    Did your child sometimes have good post-meal numbers too or were they consistently high from the time you found out they were diabetic?

    What tests did the doctor base the diagnosis on? (FBG, a1c, random BG, PP BG/GTT, fructosamine, anything else, any combo of the above.)

    I think that's all. But if you think of something that seems to be important or stood out for you please share.
     
  2. VinceysMom

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    We tried to stop D from coming into our lives, thru diet, exercise, etc., it did not work....:(
     
  3. MamaTuTu

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    My DD first BG reading was "HI" by the time she was checked into the hospital it was 969 :eek: once more blood work was done her Endo believes that she had D for less than a month. I was told that we caught it VERY VERY EARLY! Isabella was constantly thirsty, leaking through her diapers maybe 1-2 hours after changing them and was completely a different baby. She was 18 months at Dx just 3 months ago. My DH is type 1 so we had a meeter to check her and thats when we got the "HI" reading then we rushed her to the ER. She was also very hungry waking through the night crying for water... I saw another post you started a few days ago. Have you thought about getting your daughter tested with blood work I think that will give you the answers your looking for?
     
  4. MamaTuTu

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    Also maybe contact a children's Endo in your area to get the test ordered I know Im spelling it wrong and I may have the name wrong but I think its called a c-peptide or you can get her checked to see if she has the markers of D...
     
  5. Lisa P.

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    I've seen a number of moms on here with early catches.

    Ignore my post if it doesn't work for you, but I seriously think you're not going to find what you're looking for. You're not going to find a situation that mirrors yours, and you're not going to find a bunch of posts that make it clear that you have nothing to be worried about.

    You know that your suspicions are reasonable, but they may not mean diabetes. It seems to me the most reasonable course of action is to find health care professionals that can work with you to get you answers until you are satisfied one way or another.

    Check for urine ketones -- it is non-invasive and as long as there are no ketones there is no DKA. That could change in a heartbeat, of course, but checking for ketones and keeping in contact with professionals is the best way to avoid a diabetes emergency.

    Good luck.
     
  6. MamaTuTu

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    I agree with Lisa. I hate to think of a baby getting blood work if its not needed it just hurts :( BUT that will give you a clear answer. I havent had my son tested because I figure if D comes WE WILL KNOW! Just keep watching for the signs...
     
  7. Lisa P.

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    We were diagnosed without DKA. If I had one thing to do differently, I would have rejected the extensive and unnecessary blood draws, so I agree with that sentiment!
     
  8. Texas16

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    My son was 15 1/2 when diagnosed. My mother had come to stay the week before, when she left I cleaned the bathroom she had used, I thought she had spilled some sugar scrub on the floor. Cleaned it up, didn't think anything else about it.

    The next week I cleaned the bathroom and the floor was sticky again. I thought it was odd. I googled "sugar in urine" and found many diabetes threads. That morning my son woke early to drink (the first time I noticed he was overly thirsty). I took him to "CareNow" when it opened and asked them to do a BG test. He was 285. They told me had diabetes and sent me home to find an endo.

    After many calls, and many offices that told me they could see me in February (this was 12/30)....I finally asked someone if we were going to ignore the diagnosis for two months. They told me to continue to take insulin as we had been - I had to explain that we had no insulin, we had just been diagnosed. They sent me to Children's hospital.

    His numbers were easy to manage in the beginning - honeymooning I suspect. We have only see 300+ four or five times.

    Hope this helps.
     
  9. Hudson_Rocks

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    What made you suspicious? One evening after dinner, Hudson commented that his underwear had been "damp" that morning. He wasn't sure if it was urine or sweat. That made me paranoid. It never happened before or after that. Probably the reason it made me most paranoid was because in the summer (this was in October) we had randomly tested and had some "not normal" numbers, but it seemed to settle down after a week or so, and we put the worries aside. We were afraid of him having Type 2, because he was overweight. Type 1 never entered our minds.

    What kinds of numbers was your child getting at first? That first reading in October, was over 300. I know -- I should have taken him in then, but to be honest I was scared. After that we started watching his diet to see what foods did what, and found trouble with white flour products, rice and potatoes. Mostly we kept him under 200 fairly easily, as long as we avoided those things.

    Did your child have good fasting and pre-meal numbers early on? See above. The fastings were typically in the 100-115 range. I don't remember pre-meals

    Did your child sometimes have good post-meal numbers too or were they consistently high from the time you found out they were diabetic? See above. They were terrible if we ate white flour products or potatoes or rice. If we avoided those numbers were "okay" but not normal.

    What tests did the doctor base the diagnosis on? (FBG, a1c, random BG, PP BG/GTT, fructosamine, anything else, any combo of the above.) His pediatrician ordered an OGTT. His numbers that day were awful, starting with the fasting of 130-something. His a1c was 7.2.

    When we went to the pediatric endo 2 days later, she ordered the defining bloodwork. He tested positive for islet cell antibodies, and I'm told GAD as well, but it's confusing b/c the copy of the results I have says normal for that. She did not start insulin at that time, told us to "keep doing what you're doing" and to call when numbers were "consistently over 200". We were not happy with that treatment "plan" and so sought a second opinion. We started with the new doctor in April, and he's great. :)
     
  10. kimmcannally

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    We had the same thing - J used to miss the toilet quite a bit and his urine would crystallize on the wall.
     
  11. Jakethesnakesmom

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    My son was three at the time and for about 10 days prior to diagnosis, we would have accidents in the car (even after being potty trained after a year) and have a soaked bed each morning. I also remember him waking several times a night asking for water. My first thought when I took him to the pediatrician was he had a bladder infection (the diabetes symptoms did enter my mind briefly, but my thought was "no way", since it doesn't run in the family). A quick urine test at the Dr.'s confirmed high blood sugar in the 500's and off to the hospital we went.

    We were very fortunate he wasn't sick and although he did have high ketones, we weren't admitted to ICU. Although it seems we "caught" it at an, early stage, I do remember about a month and a half prior an incident where, after his birthday party, Jacob just lying in bed exhausted, feeling nauseous and breathing really fast - I remember smelling that peculiar "fruity" breath on him.

    Since the first month of his diagnosis was such a fog, all I remember is that his BG's were pretty up and down (nothing extreme though) - it took us months to figure out how certain foods affected him.

    Stephanie, Mom to Jacob age 9
    Dx since 2005, pumping with MM
     
  12. Kaylas mom

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    My kids seem to have a very slow onset type 1. Kayla was dx very early and Noah even earlier than that. Kayla's numbers started out barely reaching 200, then she was in the 200's 2 hours after meals. When she was admitted, her endo thought we could get by on just Lantus but after bkfast the next day she was still mid 200's so he added the humalog. She has never came off insulin but still is in her honeymoon period.. her numbers are pretty easy to control and she uses less insulin than most kids her age.

    Noah was dx after some bad numbers and then antibody testing. Here we are almost 6 months later and he still isn't on insulin. His a1c is now totally normal and we were told that he will have to be on insulin at some point just don't know when. We are supposed to check his bg 3 to 5 times a day and most days, I only check morning and bed. Sometimes only morning since that is the number the endo is wait to rise to start insulin. I know he gets to the upper 100's to low 200's after meals but does come down on his own with no help.
     
  13. mmc51264

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    Can you tell me a bit about your experience, please.
    I'm interested in your answers to these questions and anything else you may want to share.

    What made you suspicious? Zach started wetting the bed where he had not been before. He also was drinking a lot. He had just turned 2. We had the daycare monitor how much he was drinking there; we thought maybe he wasn't drinking and then making up for it at home. I had gestational diabeted adn they told me biggest symptomn is increased thirst and increased urination

    What kinds of numbers was your child getting at first? Don't remember

    Did your child have good fasting and pre-meal numbers early on? it depended on what he ate, sometimes, other times, they were out of range for no reason at all

    Did your child sometimes have good post-meal numbers too or were they consistently high from the time you found out they were diabetic? Again, it depended. There was, and has not been, any rhyme or reason to numbers sometimes.

    What tests did the doctor base the diagnosis on? (FBG, a1c, random BG, PP BG/GTT, fructosamine, anything else, any combo of the above.) I took Zach to our local urgent care, which is also a board-certified family practice. His blood sugar was 560. That was his diagnosis. Then we were sent to hospital for treatment. I know they did his A1c and other tests, no GTT, no reason to do that at this point.
     
  14. mmc51264

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    There is no stopping T1 as of yet.
     
  15. sarahspins

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    Mine was caught before I was in DKA... a random BG on a metabolic panel to get a baseline on my liver and kidney function (I was pregnant and having weird swings in BP) showed my BG in the 500's.... I had a cold at the time and was drinking a lot mostly I thought because of that (congested, dry mouth, etc). I was peeing a lot but I was pregnant at the time so I didn't think much of it - I just though it was normal.

    6 weeks before I'd had a full panel of bloodwork done and it was all fine, but following the metabolic panel and a weekend of testing my BG, I never had any #'s under 300 and I was started on insulin the following Monday - I never received any kind of education or anything, just "here's the RX, this is how much to take". I was titrating my own dosages within a couple of weeks.

    Because I was pregnant when I was first diagnosed, it actually took a long time to get a correct diagnosis. I've been officially diagnosed with every major type of diabetes - from GD, to Type 2 since it didn't 'go away' (that doctor had me on all kinds of oral meds - none of which worked at all and she kept yelling at me when she'd find out I was taking insulin for highs over 300) and then finally T1 when I found a doctor who was willing to listen to me and look at the 20 year old 130lb me who was at that point UNDER pre-pregnancy weight and realize that with no family history or strong lifestyle factors, T2 was really not very likely and did the antibody testing to confirm T1. That process took nearly a year. I was still honeymooning for another 7 or 8 months after that.

    There was a point after my first child was born where I was off insulin entirely for almost two months - I was having mostly normal #'s at first (so normal I was told to stop testing) but they gradually went up and up to where I was hovering in the 300's all the time. I started self-medicating at that point (I had been on insulin while pregnant) and I know it kept me out of the ER. I've never been one to "wait around" for a doctor to tell me what to do - I know insulin was the only thing working for me and it seemed silly not to use it.
     
  16. Lynnieg123

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    2/20/11 We were having a movie night and I had to keep pausing the movie so DD could use the bathroom. Also noticed this uncontrollable thirst but she had been fighting a virus for weeks so I assumed it was related.

    2/22/11 took her to doc for her cough that just kept getting worse. She had walking pneumonia. I had also mentioned her uncontrollable thirst and asked if it was related. On the way out of the office, the doc had her pee in a cup (actually, we almost forgot and walked out but she caught us at the last second) Apparently she was out of range. Then they did a finger prick and she tested "Hi". They sent us to the lab for blood work and sent us to the hospital. I never thought to ask what her numbers were until days after she was diagnosed. Diabetes was not on our radar and, aside from her walking pneumonia, she felt fine. She did have moderate keytones. She still thinks she has "walking pneumonia diabetes" no matter how many times we explain that they are 2 different things and that she no longer has walking pneumonia.

    From the beginning her numbers have been all over the place. Can't seem to keep her in range. Start saline run on a pump today in hopes of getting her numbers somewhat stable.

    Thinking back, she kept telling us she was hungry ALL THE TIME but I figured it was a growth spurt, she also was sitting really close to the tv because she couldn't see with the sugar in her eyes and I thought she was just trying to hog the TV (which she has been known to do). In other words, we missed all the classic signs and only caught it early due to walking pneumonia and a doc that pays attention.
     
  17. Christopher

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    If this is about your 19 month old daughter, and she is still having numbers in the 200's, I don't know what you are really looking for here? If you don't feel your medical team is helping you then try and find another one that will. But IMHO, you need to start doing something to bring her bg down. Hope you get this figured out.
     
  18. kgerrick

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    What made you suspicious? I never thought of T1 D. Didn't know anything about it, it doesn't run in the family. I just took my daughter to her dr. because she had a very bad stomach ache that wouldn't go away w/ no fever or anything else. And I was concerned about weight she had lost. She was in track at school and we thought maybe that was why she had lost weight. At the dr. office they listened to our symptoms and I was certain they were going to tell us that she had a new stomach flu. No such luck. I was totally broadsided when the dr. told us her BG was over 600. They tested her twice and she had large numbers of ketones in her urine. She had T1 diabete the dr. said and off to the hospital we went and we are very lucky she didn't end up in PICU. I just still feel bad that she was sick for over a month or so. She was drinking like crazy but she's 13 y/o so she can get her own water and drinks and that made it hard for me to notice how much she was drinking. She never really complained to me but after diagnosis she said that she would rather have this and know what was wrong then feel like she did and not know. For me it was the weight loss that I was mainly concerned with.

    What kinds of numbers was your child getting at first? She came down to the hi 200's in the hospital. And those slowly started coming down after a week. Then she hit the honeymoon and dropped to 38 two times and her Lantus and Humalog doses were adjusted.

    Did your child have good fasting and pre-meal numbers early on? No not for the first week

    Did your child sometimes have good post-meal numbers too or were they consistently high from the time you found out they were diabetic? Hi for a week after diagnosis then came down.

    What tests did the doctor base the diagnosis on? (FBG, a1c, random BG, PP BG/GTT, fructosamine, anything else, any combo of the above.) Random BG, Ketone, FBG, A1C

    I think that's all. But if you think of something that seems to be important or stood out for you please share.[/QUOTE]

    If you want to talk about it you have come to the right place!! CWD has really helped me talk with people who get it. Message me anytime.
     
  19. tina

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    My son started wetting the bed at four after being potty trained for over a year. He also started drinking and peeing all the time. He didnt seem to be feeling ill in any other way. That three weeks before diagnosis.

    His BG was 368 at the dr and then dropped as soon as he got insulin. Nowdays (just a few weeks later) it is like an insane roller coaster. Yesterday he helped himself to my soda as we headed out the door of Wendy's.... "How much did you drink?" "I dunno..." thus we ended up with 2 am of 384 with a correction shot. then it plummets down into the 60s by lunchtime...I feel like I am a horrible mom and totally messing this up, even though I also know it takes time to figure it out. *faceplant*
     
  20. MamaTuTu

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    Hey Tina! My DD is VERY sensitive to corrections she is 22 months old and I have found that when giving a correction also do a snack for my DD a correction and about a 10-15 gm carb snack does the trick. I think my DD is younger than your CWD BUT its worth some trail and error if you give it a shot... Best of luck to you!
     

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