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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. tymaxtess

    tymaxtess Approved members

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    Took Tessa to her family doctor today just to go over what has been happening.

    Told her that Tessa has been having stomach aches every single day for the last 2 months. She told me to give her some Tums.

    Told her about the continuing high blood sugars over 200 and she again said that maybe that is just normal for Tessa and that maybe kids are just like that.

    I personally think it is ridiculous to say that considering that a random 200 is diagnostic and that research shows that it isn't good for the body to have high spikes or to have regular high blood sugar, but maybe I am just overly cautious. Do the doctors know something I don't know? I can't find ANY information anywhere that suggests that spikes over 200 can be normal for some people.

    So, either doctors are useless or I am crazy. ???
     
  2. luvmytwins02

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    I am SO SORRY that you are still having trouble getting a specific reason behind all the weird things going on! This is CRAZY and it must take such a toll on you. I really can't offer any advice, but know that we have been thinking and praying for Tessa and for your family.
     
  3. tymaxtess

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    Thanks--y'all must be so sick of me posting the same complaint over and over!! I'm just beside myself with frustration. I'm going to have to just accept the fact that until she is really sick, nobody will pay attention.
     
  4. kiwikid

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    Did you do anything about contacting "Trialnet" direct?
    People there may understand.
     
  5. Amy C.

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    I have read over and over that the readings from a home blood glucose meter cannot be used to diagnose diabetes. I can't remember, did Tessa ever test over 200 with a hospital blood glucose meter? When a random reading is taken with this precise machine and it is over a certain number (somewhere in the 200s), it can be one of factors used to diagnose diabetes.

    I read that the blood sugar can spike in a non-diabetic when the body is under stress and it usually goes back down once the stress is over. What is too bad is that none of the doctors can find out why Tessa is feeling poorly. That creates stress for YOU!
     
  6. tymaxtess

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    No--never in the hospital or with a venous draw. I've read that about stress or illness too, although I haven't read that it goes over 200, but her's does go over 200 when she is healthy and otherwise happy.
     
  7. tymaxtess

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    Thanks--I forgot about that suggestion. Maybe I will look into that in the morning.
     
  8. coni

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    I don't know Stacy, but I would keep watching Tessa, as I know you will. I knew something was "off" with our daughter for months before diagnosis. However, diabetes didn't even cross my mind. I didn't know what was wrong, I just knew she wasn't herself, and I was beginning to suspect she had a learning problem (which she doesn't. She just couldn't think well when her blood sugar was high.)

    I hope you don't have to wait until Tessa is really sick before someone listens to you. We were told that diabetes can take up to three to five years to develop.

    I "hear" your frustration, and I feel for you. Just know that we are thinking about you and your family. Feel free to come here any time. I seriously doubt anyone is tired of hearing from you!!!

    Take care -
     
  9. MrsBadshoe

    MrsBadshoe Super Moderator

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    Stacy

    I know you have been struggling with this for quite a while now with no definate decision that it is D.

    I think for your sanity right now you need to just take a little time off. You are very aware that she might be headed into D, so it won't be something that catches you off guard. Even if your dd was official dx with D it seems her numbers are so sporatic that she is not in need of any insulin so from a medical point of view there is really nothing that a dr could do for you.

    If she does end up expeiencing full blown D down the road you will be completely prepared. I think you should just take a breather....so you'll be full rested when the time comes.....us D parents are totally sleep deprived.....
     
  10. caspi

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    I agree with Mrs. Badshoe. I have been reading your posts and I totally feel for you! All of her tests have come back with good results, so I would concentrate on that and try and relax a bit. I know how hard that can be....

    {{HUGS}}
     
  11. allisa

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    I agree with the last two posters. I have tried to say it gently in the past as well, and don't want to hurt your feelings, but I do think that for the sake of yourself, but most especially for the sake of Tessa, you should take a breather.

    All the checking and the worrying has got to have an effect on a little girl. It is quite possible that she is feeling stress that elevates her numbers.

    I can't see the benefit of puttin a little girl through that worry when the readings can't even be used for diagnosis. Ty's brother is always worried about HIS chances of developing Diabetes.....if I was checking him every time he had an "off" day....his stress would SKYROCKET and any little thing that felt bad, would make him worry and thus make him feel worse....snowballing.

    As i've said, there could be a chance that she may develop Diabetes in a few years.....but you CAN"T prevent it now.....she's not going to fall into DKA overnight.....I can't imagine whatk Tess must be thinking just waiting "for the ax to drop"....have you discussed her feelings, her worries ?

    I truly hope I don't hurt your feelings, and OF COURSE all parents with a concern are welcome here...and I do worry about that sweetie of yours....she looks happy as can be and I'd hate to see that go away.

    Best of luck to you and Tessa.
     
  12. tymaxtess

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    Thanks everyone for your concern. Although I tend to be open about my worries here on the board, I am able to be very laid back about it with Tessa. She isn't worried or stressed out at all. I treat checking her bg the same way I treat needing to give cough medicine sometimes--no big deal. I have not indicated to her in any way that I am worried about some bigger problem. Her brother has asthma and sometimes needed to take a puff on the inhaler--that is how the bg checks are viewed in our house. She is not stressed out.

    I do sometimes take a breather and relax about it all and we don't check for weeks at a time. However, it is hard to sit back and do nothing when I start to see signs of a problem again. As I said at the beginning of this thread, it has become clear that I need to just sit back and wait for her to get really sick--that is hard to to as I'm sure most of you parents know.
     
  13. Flutterby

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    I can't understand why these dr's aren't more concerned about her elevated numbers.. if they don't take the meter readings, if they don't think they are accurate, then why do thousands of parents relay on them to give us true numbers on our children.. does having a dx make the meters work right? I think you have every right to be concerned.. I can see the other posters about backing off.. but I"m not sure I could do that.. you KNOW something is not right.. I would definitely start taking her directly to get blood drawn if you start seeing elevated numbers.. again, I'm not sure why they aren't taking these meter numbers.. the meters can be downloaded.. is this meter just used on tessa? we've started to use our spare meter for Jaylin.. so all of her elevated readings are by themselves, and not mixed in w/ Kaylee's numbers..

    I feel for you.. I am totally paranoid about Jaylin, she has shown higher number.. nothing over 150, but they are elevated.. Kaylee's CDE, Endo and the girls regular pedi have all stated that they won't worry until 180, when not sick, and over 200 when sick.. so..Tessa has had many many numbers over both of those, so why won't they listen, Ijsut don't get it..

    I'll be thinking of you.. hopefully Tessa is doing better and you can relax a bit:)
     
  14. tymaxtess

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    Thanks. None of the doctors ever even ask to see her meter. It does have a few readings on it from other people, but those are just the low ones. Her average for the last 14 days is 159. That is probably from 6 readings or so. Her regular doc takes our logbook and copies it, but noone has ever asked to download info from the meter. Anyway...

    She is doing well again and we haven't had to check her at all since last Thursday when she had her "episode". She was 209 before heading to the ER. She has not gotten sick since then and was not sick when we had that reading. The whole thing is weird and I will just keep watching closely and following through if I need to.

    Thanks for your support. I appreciate it.
     
  15. 003bugs

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    Regarding all of my son's other medical issues in the past, we have had bad luck with drs. So...back in Nov. when I found my son having BG problems, I did not go to the dr. first thing. I had been monitoring my own BG for half a year. I knew my son was elevated but not in dangerous territory. I bought glucose/ketone sticks and tested his urine. And I read as much as I poss. could about diabetes. I knew in the beg. his high BG was intermittent and I knew IF he was dx. at that time, there wasn't much that could be done for him. I chose to closely monitor him from Nov. until he I finally made a dr. appt. the middle of March (when he was dx. that day). I decided to make an appt. when I knew his numbers were progressing, but when he was showing glucose in the urine all the time and sm-mod. ketones very frequently. Prior to the dr. appt. I called and requested which labs to have done also. He still is not on insulin, though that may be changing in a few wks. when we meet with the endo.

    What I am saying is...what will a dx. bring you right now? I knew in my heart my son was headed for diabetes; though my fam. thought I was a little nuts :) . My son is 5 and he knew we were monitoring his BG just like mine and it was not/is not stressful to him at all. We charted everything out on software and could see the numbers were rising over the months.

    But you know the treatment is insulin and if you have studied insulin then you already know how the diff. insulins last in your body. If Tessa is peaking around 200, but back down to normal quickly after, even a fast acting insulin is going to be too much for her. If her fastings are normally in the 80s like you say, then a long-lasting is going to be too much for her. Is there anything predictable at this point? My son is just now getting to the point where we might be able to give him insulin as he is having mid-200s with every lunch meal and they stay that way through the afternoon. His fastings are only below 100 maybe 1 day out of 9 and are mostly above 115 up to 141.

    I know personally it is nice to have a dr. on board and not be "alone" in this. But I am not doing anything w/my son, who is in early stages of diabetes and has a dx., that I wasn't doing or you can't do--before dx.
     
  16. tymaxtess

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    You are right--if it is diabetes, there isn't much I can do right now. I think you are also right that I just want a doctor on my side. Also, there is the fear that it isn't diabetes and that something else is wrong. I don't want doctors to just ignore something so obviously abnormal. What if it is something else?
     
  17. cydnimom

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    I haven't followed your whole thread ... I can't keep up to everyone, but have you looked at MODY?

    http://www.answers.com/topic/maturity-onset-diabetes-of-the-young

    Here is just one link, you can also type in MODY in your search engine to pull up several others.

    It was just a thought anyway and perhaps something you can bring to her docs. Most docs have no idea about MODY - and if they do they don't know the details.

    I can't remember, but did you also have D - gestational?

    Take care,
     
  18. Jen Jen

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    The BGs don't concern me, it's the stomach pain that does. If it's stomach pain, not nausea or just nausea, which you have to be absolutely clear on, it could be something else, you need to know the exact area she experiences the pain and the severity of it. That is where you need to push your doctor, not with the bgs.
     
  19. tymaxtess

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    I'm concerned too, but it is hard to tell with a 4 yr old. Sometimes I wonder if she mistakes hunger for pain or fullness for pain or is complaining of pain to get away from the table or to get attention or to sleep with mom and dad. There are thousands of reasons she might say her stomach hurts. KWIM?

    Why don't the bg's concern you?
     
  20. 003bugs

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    I can't remember w/o looking back at your posts....but.....

    do you test Tessa for ketones when she has stomach aches? I know that my son does experience stomach aches often and when I test for ketones he always has small-moderate ones. I also (just dx. diabetes) experience stomach aches at night often and always test positive for moderate ketones. So I know they give you a pretty good stomach ache :( .

    HOwever on another note....I have a dairy allergy and if I slip up a little bit I will have a horrid stomach ache for a day :( My sons both have many food allergies and one with celiac which presents a lot of stomach issues/constipation also.

    Sooooooo....as you know it could be so many things factoring in at the same time :eek:

    ohhh...I read you are trying dairy free.... Just to note that it takes at least 2 wks to get dairy to clear from your body. And the slightest bit of dairy is as bad as any at all. It is in so many things. When I first started I had to look up dairy derived ingredients lists and print off to become familiar with the "dairy words" to look for on labels. You can also print out dairy free food lists and go off those. Better yet would be a blood test for food allergies. That is what we finally did after trying elimination diets; but ours was a complicated situation with him being allergic to all foods really.
     
    Last edited: May 2, 2007

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