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I've given up on doctors

Discussion in 'Parents of Children with Type 1' started by tymaxtess, Apr 30, 2007.

  1. Momto4

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    Hi Stacy - I have been reading your posts for awhile now and I am completely stumped! I agree that her 14 day average of 159 is just not completely normal and if one of my children were having those kinds of numbers I would be concerned as well. I have a friend (she is about 30) and she has had type 1 diabetes for about 15 years. She has 2 daughters (age 7 and 5) that have both been diagnosed with "low insulin levels" for lack of a better medical term. They take one shot of Lantus daily and that is it - no fast acting for food or anything. They seem to monitor their blood sugar levels just like my daughter does b/c we have talked a little about testing at school. I will email her and get her opinion as well as what was going on with her girls that made the Dr. put them on Lantus. I don't the entire story about her girls' diagnosis, as I only met her last summer when my daughter was diagnosed. Hang in there. We ALL feel for you - Jennifer
     
  2. tymaxtess

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    Thanks Jennifer. It would be very helpful to know if there are other kids out there like Tessa and what doctors decided to do to help. Thanks.
     
  3. Jen Jen

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    I wouldn't recommend the Lantus at this point for Tessa, especially since she does present with some 'in range' BGs. Even with fluxing BGs, those times she's normal before adding Lantus would bottom her out completely, she'd end up low or possibly in a coma, if not resulting in higher bgs from her body trying to protect itself. Not to mention, trying to feed the insulin and just taking it would put her at risk for other problems. Insulin is brutal stuff and not to be taken lightly, especially the analogs and basals. Lows are much more damaging than highs. The BGs cannot be treated until she's at a consistant number, and treatment should begin with orals first depending on where she's constant, and this must be confirmed with an A1C(don't bother with the home version, must be lab done).

    Home bg meters, which has already been mentioned, can be inaccurate. Some people a meter will work great for and be dead on, others the same one will be off completely, even sometimes by over a hundred or two hundred, I believe it comes down to chemistry, everybody is different. If you test her for anything, it should be for ketones via blood and sugar via urine when she has the belly ache. If she presents just merely positive, that's not the cause(most 'normal' people stay positive, and also all protein meals can cause ketones, too - Atkins diet). It takes a very large off the scale amount to cause stomach problems, and the body gets used to bg levels after a time, and won't automatically cause ketones for a spike. Her spikes aren't even that high, you are taking the "it has to be 70-110" too literally, not everyone "healthy" non-D fits that profile, just like the color of skin differs, the body differs all around, though I do believe there is some glucose intolerance in play.

    Other conditions other than Diabetes can cause BG fluxes, these have to be ruled out before it comes down to absolutely Diabetes type one or type two. Stomach pain can indicate other things that would cause BG fluxes as well, like pancreatitis, gall bladder dysfunction, gallstones, liver problems, innumerable intenstinal problems(Irritable bowel, Crohn's, Celiacs, Divaticulitis, etc). True most people with gallbladder problems are fair, fat, and forty, but I wasn't and had to have mine removed at a young age. If it's some sort of gallbladder attack, be it stones or dysfunction, certain foods would trigger it, not just fatty foods or whatever, but certain fruits would trigger it(similar with most intenstinal problems), too. Pancreatitis is the one thing I would be more concerned about, it can be linked to auto immune diseases that run in the family, other than type one Diabetes, as well as a mere infection can cause it, pancreatitis is inflamation of the pancreas and can result in a type of Diabetes(not true type one, but one of the sub classes, or also known sometimes as type 3 with a b c or d associated with it) if not pursued and treated. BG problems are not always D related, though are often misdiagnosed as D, elevated BGs are not a cause, they are an effect of many different conditions, I haven't even touched on the other endocrin glads that can cause elevated BGs. Tests need to be utilized and run (CAT scan, levels on everything and anything in the blood).

    When dealing with Doctors, you cannot present with a narrow scope nine out of ten times or they ignore you. You have to gather everything you can, all the information, from temperature when she's fine and when has these attacks to whether there is sugar in urine, ketones in blood, levels of ketones normally, whether she's pale, shakie, pallid, puking, to the type of stool she has, whether she passes them regularly, everyday, every x amount of days, constipation, how frequently she urinates, document everything, even food, what she eats, does, everything. You yourself can try to see if there is a link in what she eats to what triggers this, document it all, it will help you by not focusing on one single thing, obsessing about it. Then, if the Dr will not run the tests, if they cannot reason when you have evidence, other than one little thing, and do the bloodwork, then you need another one.

    The ER's useless unless her BGs are well over 300 with large amounts of ketones and sugar in urine.
     
  4. sam1nat2

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    I second Jen Jen's advice and would recommend you have her tested for other issues as well.
    A good friend of mine had so many D symptoms---excessive thirst, frequent urination, stomach aches, ketones. I met her early one morning to test her bg and it was normal. She was diagnosed with celiac.
    From what I understand, stress hormones, which can be from physical or emotional causes, can elevate blood sugars even in non-diabetics.

    You are doing the right thing to stay on top of this, hopefully you can find out something that you can treat.
     
  5. Flutterby

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    I was told by Kaylee's endo and CDE that insulin in a child that doesn't need it (I.E in someone that their pancreas is working normal) won't do anything to them because their body will correct it.. I was in a meeting with K's CDE when a mother of twin (identical) twin boys called in a panic.. apparently the boys had switched spots and the non-d twin got the lantus.. she told her not to worry that his body would take care of it..


    are you saying that she shouldn't be concerned that her daughter is frequently in the upper 100s and 200s for bg check.. its not as though Tessa has has some numbers that are 121, or even 130.. she's been in the upper 200s before.. not just once, but many times.. that isn't normal.. if meters were inaccurate.. why do I trust them to keep my daughter healthy.. why do I trust the number that comes up.. yes, body chemistry is different.. but I don't think that is going to cause her meter to read at 285..

    There are trials being done out there to prevent diabetes from happening in patients that are at the very beginning of the cell destruction..
     
  6. allisa

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    YIKES !! :eek: :eek: :eek:

    I don't know if it is true that a non-diabetic's body will correct if insulin is given.....isn't that how they say Sunny Von Bulow died ?

    I do not think anyone here EVER actually suggested giving insulin......
     
  7. tymaxtess

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    Actually, it IS something that some doctors will do for kids like Tessa that seem to be in an emerging state of diabetes. Dr. Brink has talked about it on the Ask the Diabetes Team section. Some doctors recommend a change in diet and others will try small doses of insulin.
     
  8. tymaxtess

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    Sure, but what about the times where she is completely healthy and having no other symptoms and her bg is high? That has happened. The most recent occassion she was extremely irritable but not complaining about any pains and her bg was 209.
     
  9. 003bugs

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    Remember that a true 2 wk average would be for all numbers, 24/7. Not realistic however, so an acurate 2 wk average would normally include all pre- and 2 hr. post meal numbers thrown in together. Make sense? So if the 2 wk average of 159 you report mostly includes 1 or 2 hr. post meal numbers then it is not a true average. But even if it only a post meal average, it is still too high and significant to note.

    When I took my son to the dr. I went armed with all kinds of charts, so I would not be taken lightly. I broke the numbers down into categories of averages. Like the 90 day, 60 day, 30 day, 14 day and 7 day average of: fastings, 2 hr. post breakfast, pre lunch, 2 hr. post lunch, pre dinner and middle of night. My reports showed that even though some of the numbers were not 'bad' they were all increasing. It is also very easy to see more pattern this way; for my son, he is always high after lunch and only half the time following breakfast. I also kept track of a lot of basic carb counts and meal types. For instance I wanted the dr. to see that my son was not living on juice, soda, desert....that he was spiking due to small amounts of anything really.
     
  10. tymaxtess

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    Are you random with your checks or are you on a strict schedule? Right now I couldn't do any nifty charts or averages really because I check her on such a random schedule. Mostly I only check when I notice symptoms or when she was high and I am watching to make sure she comes back down.
     
  11. Momof4gr8kids

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    I hope that you are at least writing down on a log what she ate, or was doing, or any other details that might come in handy.

    Stacy, I am so sorry you are going through this. I really hope that this either stops as suddenly as it came about, or they find the reason behind it.
     
  12. tymaxtess

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    I probably need to write down more than I do. I think I need a log book with more room in it! Right now I am just writing down the time, the bg, and how long it is after a meal or snack. I haven't been writing down WHAT she ate, but I think I will start to. When she had significant symptoms (dizziness, irritability, headache, etc.) I was making a note of it.
     
  13. 003bugs

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    ====================================
    I am not saying you have to check more right now really. Just to keep the numbers you do check in the correct categories. Say you check today fasting, then check a different day 2 hr.post breakfast, then check another day pre-lunch, then another day post lunch...ect... Just understand there is a big difference between a post-meal average of 159 and a 24/7 average of 159 and that is significant to note.

    I have been mostly random checking the last 5 months. But I kept good records prior to the last dr. visit and I will keep good records the next 2 wks. in prep. for the endo. visit. Since his dx. I have really slacked off on the checking because I don't feel I have a case to argue anymore and I know his levels are high, but not critical at this point. I think his 2 wk meter average includes 22 readings right now, which is a lot less then I was doing prior. I also include positive urine sugar checks and positive ketone checks. I also note higher activity level. I'm sure I won't always do it this way, but I think it is important right now while figuring it all out.
     
  14. tymaxtess

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    Thanks--I'm not even sure what the 159 average includes--I'll have to look. Do you think doctors treat you differently because you are so organized and informed? I swear the endocrinologist didn't like me and blew me off BECAUSE I had so much info and was so organized--like I was a hypochondriac or something.
     
  15. 003bugs

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    :D Ah yes, I know the feeling well!!:D

    Last yr. when I went to the endo. with random high numbers on myself with a chart of the previous week. The endo. actually told me I was making up the numbers (because some labs came back normal) and treated me like a hypochondriac!! So...I monitored myself for a yr. and when my numbers were very consistantly high went to another dr. who immediately dx. me. I knew I was having high numbers, but didn't know enough to ask the right ?s at the time when he blew me off.

    When I took my son to the dr. in March he actually called me OCD!! He admitted that I knew more about it then he did even, but acted like I was a big nut case :p I told him I didn't care. He also knew of all the things my son has been dx. with, I was the initiator of the testing and that NONE of the specialits ever figured it out. At this time, I knew a lot of info and nothing the dr. said went over my head and I even (kindly)corrected him on a few things. If I had walked in there saying my son has sporadic high numbers he would have offered some testing, which would have come back slightly elevated and said just monitor him for a while; probably nothing. But I walked in there with charts and lab results and showed them the numbers and told them to dip his urine and check his blood. I could tell him what he ate prior to what number and so forth. I walked out of there w/the dr. way more concerned about the situation than I was :eek: But I treaded lightly, because no dr. likes to be told things by a parent. I did not walk in there on a mission to have diabetes dx. or else attitude. I was just prepared and if he would have told me things were fine, I would have just gone elsewhere, because I had the info. to know things were not fine. But of course he was not diagnosed off of my info., he was dx. by lab results and urine dipping and my results just backed the fact up that this had been going on for months and was not just a fluke thing.
     
  16. tymaxtess

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    What does your dh think? If it were just me, I probably would continue to go to different doctors until I found one that respected me and listened to my concerns without immediately dismissing me, but my dh is really content to just believe the doctors without question. Also, I do know that I am informed and that I will be aware if and when things get worse, so I tend to defer to my dh about this and back off when it comes to finding another doctor.
     
  17. 003bugs

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    Well, we have had quite a dissapointing history with drs. regarding our 3 kids. Through the internet and with the Lord's direction I have been able to figure out several dx.(confirmed through lab testing of course :eek: ) that many many specialists and all the wrong tests could not uncover, ....so my husband is very supportive of me now. We did follow along the drs. blindly for years however before finally grabbing the reins ourselves. And that is another reason I waited and monitored my son for 4 months until he reached a certain point in my mind where I wanted a dr. on board with us. Just our story...:cwds:
     
  18. tymaxtess

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    Well--you have been very helpful and encouraging and I appreciate it very much! I wish I could find a dr. like House--one that will keep looking even when all the tests show nothing. I think doctors rely much too much on lab results and not enough on patient symptoms and anecdotal evidence. Anyway...
     
  19. Aprilsmom

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    Yeah I agree. I love House. Good luck to you Stacy.
     

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