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Where is that line?

Discussion in 'Parents of Children with Type 1' started by Lindy, Jun 24, 2010.

  1. Lindy

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    Kind of an off shoot from another thread - but I'm curious...

    We live in an economically deprived area, blue collar, high teen pregnancy rate, high alcoholism etc. etc. etc.

    I am surprised to read in the local paper about young people in their 20's dying from complications from diabetes. Our town is around 8000 people - so having 3 or 4 deaths in the past 5 years, was a little shocking to me. Of course I inquired and have heard they typically didn't take care of their diabetes....

    I started a small support group - and was shocked to hear some of the A1c's of the other children (over 10) for extended periods of time. I did spend some time with the families, and I have to say I did not think the parents incapable of understanding diabetes, but rather a complete disconnect with the fact that they could help their child with the disease. It was more of an attitude of "it runs in our family so what can we do?". or "he's brittle, it's the worst kind so we can't do anything". One child is sent to a birthday party without insulin, and the mom tells me when he got home she guessed at how much insulin to give him - she crashed him and he had a ride in the ambulance. When I talked to her about the need to count carbs and bolus - it went in one ear and out the other. I have seen her at the fair with her child, eating cotton candy, corn dog etc. - no insulin. She'd give it to him when he got home.

    So when I see that a local 21 yr old died from Type 1 complications and I hear that he ran high for years and didn't take care of himself - well it makes me mad.

    Where were people in his life - raising the red flag of concern to somebody - that this child was in trouble? What is the school's responsbility to report consistently high numbers? The doctor's involvement?

    We have battled some tough numbers, stuck in the highs - then bottoming out...we are NOT perfect! But, in this day and age I will NOT accept the excuses for children being so poorly controlled, but how do you deal with a parents attitude that they are doing their best....and in actuality - that may be very true. Who steps in to help the child when what the caregivers are doing is not safe?

    One of the parents in our group had a daughter dx'd in 2nd grade - now in middle school and has had some complications from her D. After watching, and hearing from them - I know why she has complications. So it's just luck or fate - that some of our d kids get parents who understand the disease and manipulate insulin and food to give them a normal life?

    From what I have witnessed - I believe that some of these children deserve intervention. I am saying that these parents may absolutely love their children, but cannot wrap their heads around treating diabetes.

    I do feel strongly that I have an obligation to help any child in need - and to do so in a way that is most effective for the child. If helping mom and dad doesn't work, than shouldn't I be going to the next step? Why should a 20yr old die from complications, when he could have been helped in grade school, middle school and high school to understand his diabetes and be able to help himself.

    Am I wrong?
     
  2. Kaylas mom

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    Good questions. Since we are so new to this, I have no idea really. We are trying to be as proactive as possibly with Kayla since she was dx as a teenager, I feel we only have a short time to make lasting habits for her before she is out of the house.

    DH works with a woman who is T1.. she had a twin brother who died from complications and she herself doesn't count carbs, he has never seen her test (not that that means she doesn't) but has seen her give insulin shots and go low enough to be confused and unable to do her job without someone guiding her to the break room and making her drink juice on several occasions.

    When Kayla was dx, he went to work and asked her somethings (for support) and he said.. you are T1 right? she said.. I don't know, whatever type needs insulin. ?? That is scary. I just wonder what went wrong with both her and her twin that made them think she doesn't need to take care of herself.
     
  3. nanhsot

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    This is something that has haunted me even before the recent thread. I am terribly bothered by that thread, hope it is closed soon as the lack of response from the OP is depressing and makes me feel like it is hopeless.

    We found out recently that a distant cousin (whom we know) has a T1 daughter (have never met her) and has since age 8 or something. Her mom told us a few months ago that she refuses to wear a pump, is too scared. THEN, just recently this mom asked my son what his A1C was, he told her, and she just sighed and said her daughter's is 11-something and has been. Apparently this girl had friends who died of lows and is terrified of being low. I am heartbroken for her. My son and I looked at each other in horror and asked what she was doing to help her...she really didn't answer. This girl is an adult and not living at home, is in another city from the mom.

    This terrifies me, that some day my son may do this type of negligent care. I don't have any answers to your questions, but it's been rattling around in my brain that something needs to be done, somehow, but I don't know what. I am considering reaching out to her (she doesn't even know us!) but not sure how. The mom originally told me to contact her for help, apparently she ran track in college and was active in high school, but it seems to me that she NEEDS help.

    Between the thread here and knowing that a distant relation is living in the 300+ all day long is just too much for me to handle on top of handling my own son, but you're right, someone needs to be there for these kids AND adults. I hate diabetes.
     
  4. frizzyrazzy

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    No, you're not wrong. No child should have to die from complications of high blood sugars due in part from improperly managed diabetes.
     
  5. sarahspins

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    I used to have an online friend who was much older than me.. she had a son my age, who was diagnosed when he was 17. He died 2 years ago at only 28. 11 years of D.. and he died from diabetes complications (I'm not sure exactly what, but I have presumed he died as the result of DKA). I was astounded.. I personally can't fathom it.

    It makes me sad, bitter, and angry (and ultimately she is no longer a friend due to her attitude about the whole thing), but you also have to realize after a point, a child grows up and has to manage their D, it's not going to be up to the parents, there's not a whole lot the community or anyone around them CAN do if they are not motivated to do it for themselves. I mean really, what do you do if they don't? Use scare tactics? Take something away from them? They're adults.. they ultimately make their own choices.

    The worst part is that there are MANY diabetics out there really not taking care of themselves.. not testing regularly, if at all, not injecting insulin regularly (some only once a day). Most run very high most of the time. On some level maybe it's easier that way.. yeah, you might feel a little lousy most of the time, but you can eat anything and not gain weight. It's also possible that in some way part if it is due to a lack of education about the current methods of managing D.. not all that long ago, "not testing" and only injecting insulin once or twice a day was really the norm.. and you DID run ahigh a lot of the time (hence why most T1's were "skinny) and there are a lot of diabetics who are STILL on those regimens.

    I sometimes wonder if I hadn't been diagnosed while I was pregnant, and good control wasn't quite so critical, if I might have ended up like so many others.. not caring, or staying on 2 shots a day.. I don't really know. I was a college student and everyone around me that should have been my "support system" was absolutely CLUELESS, to the point of offering dangerous advice (even from one doctor). I didn't listen to them, and I sought out better treatment for myself, obviously, but it does make me wonder.

    All that said, I do have to admit that in mixed company I am sometimes shy about testing.. I don't know why, so there are people who know me that have never seen me test (and I absolutely never test in front of my mom for example, because as I've mentioned before she equates "needing" to test with being "uncontrolled" - as backwards as that seems) but that doesn't mean I'm not testing.. it just means some people don't see it. It takes 15 seconds to slip away and get it done.
     
  6. emm142

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    I'm not sure if this is something which varies by country, or whether the people with D I am exposed to on CWD are just of a different type than those who generally occur in "real life". I have two main IRL friends with D, I'll call one A (15y/o) and one B (17y/o). They both have incredibly high a1Cs. B has been dx'd for a year, and she is scared of lows. She tests a few times a day, and takes insulin, but doesn't do much else (doesn't test post meal or figure patterns to make her own changes). A has been dx'd for 11 years, and took over all her own care at about age 11. I think she's just burnt out. Highs and lows just don't bother her anymore. Occasionally when she forgets to bring her meter to school she's tested with mine, and always been "HI". The other day she tested and she was 0.8mmol/l (14mg/dl). I've been LO before, but let's just say I was freaking out a heck of a lot more than she was.

    At D camp, they were basically impressed with any BG below 500. The other teenagers there seemed impressed if you even had an a1C which registered on the meter (i.e. an a1C below 14). I found it quite depressing. I also went to a meeting the other day with all the other pump users in my area. IIRC there were 8 of them, and only one who didn't have D complications. They all said that they hadn't taken care of themselves as teens.

    I strongly believe that parents should help take care of their kids diabetes for absolutely as long as possible. Personally I've been in charge of my own care since dx, and it worked for me and my family, but I think we're the exception rather than the rule. D care is exhausting, and these kids are going to have to do it for the rest of their lives... Some teenagers have very strong ideas about partying and not considering the long term, and honestly, I'd say about 80% of teens where I am smoke, at least in a "social" setting. Probably roughly the same percentage drink a LOT of alcohol, on a regular basis. Why on earth would these same kids properly look after their diabetes?

    Sorry, went off on a bit of a tangent there. Sort of relevent.
     
  7. MamaC

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    I don't know where the line is, but I do know this:

    If I was unable or unwilling to properly care for my child, disease or no disease, my sincere wish is that SOMEONE, ANYONE, would have the sense - and the stones - to whack me upside the head until something changed for the better. Failing that, to call in third party assistance.
     
  8. StillMamamia

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    I think this is probably the most dangerous aspect of it all. The giving up.
    The tools are there to try to manage D, so why would someone give up on using any of them to better their child's life? My only answer is deep-set depression, which fathers resignation that this is how things are, so why try to do better.

    And that's when the D team should step in. If they repeatedly see high A1cs despite consistent proposed strategies to improve management, or if he/she sees repeated lack of interest for anything proposed, or even total disregard for endo appointments, then IMO, they should step in and 1) get the child hospitalised, 2) get some psychological help for the child and the parents, and, if all else fails, 3) call CPS.

    That is if the D team is comprised of a social worker branch. If not, I truly think an endo could step in. Because a child's life is literally at stake.

    As for us, on the other side, I think if everything points to neglect after repeated attempts to try to bring some sense into the parent, then I would rather feel remorse for calling CPS for something which is not "as bad" as I thought it was, then remorse for learning later on the fate of such a child.

    However, the line, IMO, becomes very thin, if you step in because someone who is an adult is not taking care of themselves. It is, after all, their choice. But while they are under the care of someone who is supposed to look out for them, then that's just not acceptable.

    Maybe it's very black and white for me, but with the tools one has today to manage D, there is no excuse in the world not to use them. Sure, D is a beast and it'll kick our backside over and over, but if we show we do do our best and actually get results (albeit temporary at times) and show effort, then why give up?
     
  9. sarahspins

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    This is probably opening up an entirely different discussion, but for the sake of argument, say a child WAS removed from their home for medical neglect (not suggesting that would happen to you or anyone else here on CWD) - is foster care really going to provide them with better medical care in that kind of a case? I fear that it would simply remove them from one potentially critical situation and thrust them into another.. and odds are good it wouldn't really be better.

    I do think that Emma hit it dead on - the people here on CWD (and other forums) are "different" than a majority of PWD in real life. We are the exceptions, not the rule. It shouldn't be that way.
     
  10. Melancholywings

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    What happens with children who need medical care from families who don't believe in doctors? I can't remember the religion. Does the government step in then?
     
  11. Seans Mom

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    In the case of the WI parents.... I believe they were convicted of negligent homicide of their daughter.

    I don't recall if anything was reported in the case of the girl in TX.

    The point of the OP I think is when do you step in so that it doesn't end as it did for those 2 children? Religious beliefs or not.
    I'm not sure truthfully. I would hope I would be able to realize when it's necessary and when there are other routes that would help. But honestly, I don't know for sure if I would know. :(

    Does anyone remember... didn't WI change the law regarding exemptions of medical care for minors for religious reasons? If I recall correctly they did.
     
    Last edited: Jun 24, 2010
  12. lauraqofu

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    I have to say I think lack of testing, lack of proper D care by parents of a CWD should absolutely be considered child endangerment, and that if the endo or pediatrician, or any medical personnel, see this as an ongoing thing, they (as mandated reporters) should be contacting CPS. I mean, if a person takes their child to the dr, and they haven't been feeding their kid, and that kid is suffering health issues (ie, failure to thrive) they would report that, right? Well, isn't not giving insulin and controlling blood sugars the same thing for our D kids?

    I know that there is some freedom for religious beliefs in terms of medical care, but you can't pray insulin production into your child, you can't ignore it and hope that, somehow, the pancreas will magically fix itself and start producing insulin. If you don't take care of D, it will kill your child. That is black and white.

    And no, foster care isn't ideal, but how many of these parents would straighten up their acts should CPS come knocking on the door and start monitoring? A few years ago, in the midst of yet another custody issue, my ex called CPS and made a false report about cleanliness of my home, and even though I KNEW we were okay, that my home was clean, that my daughter was taken care of, I was still terrified when the social worker came to my house and inspected it, and I would think that having someone knock on your door and say..."Hey, we know what's going on, we know what you're supposed to be doing, and if your kid doesn't get the care he or she needs with you, we will find someone who can give them that care.", wouldn't that shock you out of any apathy caused by depression or denial?
     
  13. sarahspins

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    I'm not suggesting that it isn't the same.. but on the same token, is there a magic # where CPS should automatically get involved? An A1C over 9? Over 10? Over 14? Where could that "line" really be drawn? How do you really document the difference between a "rough patch" and "not trying" as a medical professional? I am sure it's not as clear cut as it seems.
     
  14. AlisonKS

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    exactly! It could be a slippery slope and add the fact that many people that work for CPS have no clue how type 1 diabetes can be crazy we'd all be screwed.
    I'm not sure what you can do for people that don't take care of their kids diabetes if they don't listen. Same goes with parents who feed their kids, diabetes or not, crap every day and have children who will be type 2 diabetics by their teen years-saw that on the news the other day. The mom claimed it was cause she was too busy to feed health food and her daughter was diagnosed with type 2 when she was 13.
    I've met a few parents of cwd (not on this board) who kind of horrified me with what they do-no weighing food, kids overweight to obese (cause you can cover anything with insulin and eat wendys everyday:rolleyes:). They kind of bragged about how relaxed they are about the whole thing. I guess the best thing to do is lead by example.
     
  15. nanhsot

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    Slippery slope for sure! In my ideal world every endo office in the world would employee social workers whose job it is to intervene in homes wehre there clearly is no real rhyme nor reason to the management. That's how we handle it in home health (adults, not D related though sometimes it is), we send out a social worker to the home and work within the home with the clients, we'd do that for a good while before we would consider calling APS. We even have a CDE on staff for our prickly "brittle" (in quotes cause they call themselves that all the time, I deal with mostly old folks) diabetics. She consulted me the other day on a guy drawing up insulin with 1 hand, so we use a team approach. It's really not that hard to accomplish, if you care enough about your clients, which every good MD office should.

    Clearly if the family has access to insulin they are seeing a physician, so someone along the way should be drawing A1C numbers and goodness gracious, if Joe Schmo (that's me, only 4 months into this) can automatically draw the conclusion that the child or adult is in true danger, surely the MD knows this too.

    But to call in CPS? I don't see this ever being a solution in cases like this UNLESS they are withholding insulin, purposely feeding them high carbs without treating (as in one of those articles), etc. There are too many variables to consider and removing a child from the home certainly isn't going to fix a lot of those variables.

    Better, I think, to have peer relations (support groups) easily accessible, social workers or nutritionists and CDE's who go into the home to work with them. Ha. I do live in a little dream bubble don't I? Like insurance would pay for THAT.

    To further complicate things, is that not all MD's strive for the type of control that I think most of us here do. We did a research trial and had some checkups from an adult oriented endo (in addition to our own pedi endo). She had us back off the lantus at one point and I complained that it was keeping him in the 150-200 range and I wasn't comfortable with that. She just sort of looked at me owlishly, and said "but that's a good range". It CAN be, but if I can lower it safely, shouldn't I? It seemed like she didn't see any point in working to bring it lower. So not even all MD's agree on what "good control" is.

    Complicated stuff, slippery and complicated.
     
  16. Becky Stevens mom

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    This is exactly what I was thinking.

    In the past 6 years Steven had one A1C of 7.7 that the endo reamed me out about to the point that I called the CDE and said that we needed to change endos. She said in effect that an A1C of 7.7 in a 6 year old child was much too high and that we needed to put him on a pump to get better control and lower A1Cs. Our clinic has since the beginning encouraged us to keep Stevens A1C under 7. All but that one A1C have been below 7.5. Now if our endo had that kind of reaction to one high A1C then I think its every board certified pediatric endos responsibility both legally and morally to not allow a patient to have A1Cs that are always over 8. They should have a plan in place for this. If the patient doesnt have the finances then help them figure out how to pay for supplies. The plan should be after one year of A1Cs over 8 that the patient needs to be seen every month by the CDE, these appts will be long, log books will be gone over, meters will be downloaded, adjustments will be made, different insulins will be tried if the ones being used arent working, if necessary emails will be exchanged every day until BGs start to get in somewhat better range, at the very least under 250 on a regular basis. If the patients parents wont comply then CPS should be called to investigate. A doctor takes an oath to first do no harm. When they send a child out of their office with constantly high A1Cs they are doing harm to that patient and should face legal action and loss of their medical liscense.

    So after that babbledge, if I see a person beating on their kid in the store you better believe Im not going to keep walking but will step in and get the authorities there if necessary. But calling someone because of something Ive read on the computer isnt something that I would do personally.
     
  17. frizzyrazzy

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    so it's really nice that we're all really outraged in theory, but when presented with a real situation everyone decides that it's not really that bad. and I include myself here too because I didn't call CPS and I don't know anyone who actually did. But we're all just soooo horrified and yet none of us are going to do anything.
     
  18. Lindy

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    I've read several things over time that has had me worried, yet I find myself far enough removed to somehow justify (in my own mind) that it's none of my business. Now, I will admit that if that was in my own neck of the woods, it would be a different story. I may call the county health dept, local cde etc.. - but, I would be seeking help where I felt it was warranted.

    To clarify, we are not talking about a random high A1c - or a couple in a row.... we are talking about year(s) of highs. And, again - not everyone in "my neck of the woods" sees an endo or goes regularly.

    Doesn't someone here have a quote that says - "the one that knows the most, lives the longest."?

    Too many people sit by and do nothing, say nothing - and children suffer. I called the humane society once and reported a possible cruelty to a dog.. I think I actually called the sheriff's office - and yowzer did I get some flack. But, isn't that what I was supposed to do? Or was I supposed to go and investigate on my own, possibly remove the animal if I felt it was in fact in a cruel situation. We have a system in place for a reason, yet we are all afraid to "be the one"!

    We are CRAZY!
     
  19. lauraqofu

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    I hope no one thought I was suggesting the first bad number should result in a CPS call, but I think that the ped diabetes teams can tell the difference in difficult to control numbers and lack of care. And I would think as mandated reporters (as all who work with children are required to be) the intervention would come before the child died or suffered irrepairable harm.

    Of course, that doesn't really help the kids whose parents flat out don't take them to the doctor. I'm for freedom of religion, and I'm all for adults choosing to pray rather than seeing doctors, but I don't think parents should be allowed to choose prayer for their children's life-threatening illnesses. I'm not religious, but I can't fathom a god who would tell you to let your child die rather than avail yourself of readily available medical care.

    As an outsider, and not a medical professional, it would be hard to say that a parent wasn't taking responsible care of their CWD, but in other cases of suspected abuse, you can bet your behind I'd report someone to CPS.
     
  20. Heather(CA)

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    I'm sure each situation is different. BUT< there is hope, I recently went to a support group meeting and there was a COUPLE there, BOTH of them. That had a foster child with D. I think that's awesome!:D Oh and he was dx'd just before they got him:cwds:
     

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