Discussion in 'Parents of Children with Type 1' started by Christopher, Nov 22, 2013.
Thank you. At least now I know I'm not losing my mind.
You're completely misguided. Go take 5 minutes, or 30, and read the diagnosis stories. You'll see that many people repeatedly took their child to the pediatrician, or the ER and were sent home. Over and over they brought children to the doctors and were told nothing was wrong. That's the opposite of what you're saying. These parent, if nothing else, were on top of the situation. This study says that up to 38% of kids who present with DKA are seen by at least one doctor prior to DX. Further it doesn't say anything about lack of vigilance unless you're going to make another extreme leap and say that education and financial status equates abuse. http://www.bmj.com/content/343/bmj.d4092
You're making some absurb connection between your child's diagnosis and every other child's diagnosis because you think your wife possesses some mysterious powers of avoiding DKA. You have absolutely no clue how quickly DKA comes on, and you've never witnessed your child having nothing more than a cold the day before, be half dead the next day. Until you do, you can take your hypothetical study and shove it .
And further, since this thread was some misguided attempt to make parents feel better for DKA, and some actual science was thrown in there to say well maybe that's not the whole story, would you like to back your claims up with some sort of science? Same goes for Swellman.
If we're simply pulling **** out of thin air, then my sample size of one will say that my child had DKA at diagnosis and has never had DKA again. Maybe there are others to add to my hypothetical study.
Let's see those studies please.
No, it's not useless.
This thread was started as some misguided attempt to make people feel less guilty about DKA at diagnosis and possible correlations to future outcomes. Unless if any of us can go back in time and fix a DKA admission, there's nothing to feel guilty about, so this whole thread was pretty pointless.
Many people have cited the studies that exist on possible connections between DKA at dx and later outcomes. Regardless of if you and Chris and Swellman think those studies are relevant, they are the studies we have, and they prove a somewhat tiny connection.
Then, the whole thread has devolved into you and Swellman claiming some ability to ward off DKA simply by your own vigilance, which again, studies have been shown to say that's simply not possible. That DKA at diagnosis has less to do with parental "care" and more to do with age at diagnosis, lack of insurance, and basic body chemistry. The fact that anecdotally, many parents here have brought their children repeatedly to the physician prior to diagnosis and still wound up with DKA is borne out in the 38% stat posted above.
I encourage you to provide some fact to show that DKA has anything to do with how vigilant a parent is prior to diagnosis, and do not err and make the connection that poor = parental ambivalence about care. Until then, you're doing nothing but inflaming the situation.
I don't even know where to jump in but here seems logical. (because I agree with the above).
I'm a medical professional and I knew the signs. I actually TOLD my teen to quit acting diabetic. Seriously, proud moment there. I was plenty vigilant, just had convinced myself that young healthy teens didn't suddenly get diabetes overnight. Borrowed a glucometer from work and was in ICU an hour later.
Perhaps those who caught it early are simply lucky to have recognized it. I was very vigilant, very concerned about what was wrong with my son. But seriously, normal healthy kids with no family history do NOT get juvenile diabetes, that's for little kids, right? RIGHT?
Any episode of DKA may be harmful, but there is no specific evidence I've seen in published studies that DKA at diagnosis is a unique determinant of long-term complications. For anyone concerned about long-term complications, the answer is not to look back and wonder about the DKA but rather to be vigilant about BG control going forward. The ongoing DCCT 30-year study proved (and continues to prove) that post-diagnosis control is the primary statistical relation to long-term complications, even when non-controllable factors such as genetics, age at dx, etc., are factored in.
DKA at dx is no doubt harmful, even if in the short-term, and is avoidable. As mentioned earlier, signs of D are often missed even by pediatricians (including our pediatrician at the time). Better education as to the signs of T1 for parents, schoolteachers, and doctors would go a long way to avoiding DKA in children.
DavidN, what did you mean by "flame away?" Were you were looking to provoke something? As Lee pointed out, there are vigilant parents who lost their children to DKA, many more whose kids were finally dx'd late due to doctors ignoring the parent's instincts, and many parents who have proven to be quite vigilant after a late dx. Even if there is some broad statistic that backs up what you are saying, it doesn't make it acceptable to come out and make a statement that could then apply to an individual parent, any more than, say, stating that people of a certain social class are more prone to crime because the overall statistics show that. No point in bringing that kind of incivility to this group, especially given the sensitivities involved.
Darryl - I wrote "flame away" because I suspected having a conversation about probabilities often times leads to misunderstanding. Once again I'll agree with Lee (and you and Mish), being vigilant in no way guarantees our children's health or safety. Never said otherwise. In fact, what I wrote concurred with Lee. I only suggested that being vigilant on the margin MAY help. That's it. That was my only point. This doesn't mean any parent who missed the dx was not vigilant. And anyone with that takeaway chose to ignore my references to "loose relationship", "not everyone meets my explanation", "many factors go into catching dx", blah blah blah ...
With all that said, you're right. If I wrote "flame away", then part of me knew there was a chance some would take offense by completely misinterpretting what I was trying to say. In retrospect, I didn't think enough about the heaviness of the topic.
For me, this place has been a terrific resource for practical help and emotional support. My posts in this thread did neither.
We are all bonded by a shitty disease/condition. It's a crappy feeling to know I've some how hurt and/or offended a CWD parent who's already dealing with enough crap. So for that I apologize.
If wanting to prevent parents here from unnecessary worry and anxiety is misguided then I am happy to be misguided.
I will try and make this as simple as possible. Someone in another thread made the statement that children who are in DKA at dx have a greater chance of having complications in the future. I didn't believe that and there was no solid facts/research to back that up. I believe that parents reading that statement and taking it as fact might be anxious and worried about their child's future unnecessarily. I created this thread simply to see if there was any solid scientific proof to show that children who are in DKA at dx have a greater chance of having future complications. I still have not seen that proof.
I'm not sure how many more studies people can point to, but the evidence is clearly mixed. And there seem to be no long term studies which looked at this. That's what people are trying to say. You cannot prove it or disprove it. For every study I find that shows one direction, another shows something else. This study shows no connection at 1 year. And only looks at 857 patients but shows no connection to DKA at dx. Under your criteria, it also must be discarded as too few people and too short term to be relevant to the discussion. http://www.ncbi.nlm.nih.gov/pubmed/23889707
Unless you can go back in time and change the diagnosis circumstances and somehow avoid DKA, there is simply zero point in worrying about future complications related to DKA, if such a connection exists. No one should take any comfort, nor should they have needless worry, over something that simply cannot be controlled in the past.
And even so, look at that study. A predictor of good outcome over the first year is "living with two parents". Oh and double bonus if you're white. Your race at diagnosis seems to hold more weight than your DKA status. Unless you've got a way for people to change their race. Just because we could make a leap and say that DKA doesn't hold any weight when it comes to first year outcomes, and perhaps later complications, doesn't mean that it's entirely true, nor does it mean that we can control every situation.
Which is why the whole topic seems irrelevant, because while you think you simply want to help people avoid unnecessary worry, there is zero proof that you can do that. Nor, is there any indication that anyone (but you) have found the original statement to be worrisome. You asked for studies. People have given what limited studies there were. Everyone that has posted, has posted some results from both sides. No one who has responded has had a preconceived notion about the results except for you. It is simply inconclusive at this point because it hasn't been studied enough.
"White race, higher socioeconomic status, two-parent household, more frequent SMBG, and low insulin requirements are associated with lower HbA1c concentration 1 yr after the onset of T1D in children."
This article looks at 29,000 children and rates of DKA varied among countries. Their findings suggest that DKA at diagnosis may be higher in poorer countries, and countries closer to the equator. Consequently, those places also have the highest rate of future complications from diabetes. So, that points to DKA to at dx leading to future complications.
However, even in this paper, while the easy answer is to say that those findings are related, they still go on to say that they don't know if perhaps the greater rate of DKA represents a more aggressive form of diabetes specific to those areas, and the resulting complications are what you're seeing because of that fact. So while this study isn't specifically looking at what you want, information can be gathered.
But again, inconclusive. And should make no one feel better or worse.
..Unless you're from a higher socioeconomic status, married and white. Every study points to good outcomes for those people.
A little more from the SEARCH study I cited earlier. (Full text: http://pediatrics.aappublications.org/content/121/5/e1258.full.pdf)
Consistent with the observation that many of us with resources had kids in DKA:
"Although we found that low socioeconomic status, insufficient health insurance, and lower parental education were independently associated with the risk of DKA, we also found that 20% of children from the most affluent families have DKA at diagnosis."
And, an explanation of *possible* explanation of how DKA at diagnosis could result in an increased risk of complications:
"In the United States, the Diabetes Autoimmunity Study in Youth, an observational study following children at high risk for type 1 diabetes by periodic testing for diabetes autoantibodies, levels of hemoglobin A1c, and random blood glucose, demonstrated that the clinical course of diabetes is milder in youth diagnosed without DKA. 35 Children followed by the Diabetes Autoimmunity Study in the Young were rarely hospitalized and did not develop DKA at diagnosis of diabetes, in contrast to community control subjects with and without a family history of diabetes. They also had nearly normal hemoglobin A1c values at diagnosis, with significantly lower requirements for insulin in the first year of illness. This milder clinical course at diagnosis may have very important long-term implications because near-euglycemic control at onset occurring spontaneously 36 or achieved by intensive insulin treatment 37 has been shown to preserve the secretion of insulin. Residual endogenous insulin secretion, as shown by the Diabetes Control and Complications Trial, predicted a 65% lower risk of severe hypoglycemia 38 and a 50% lower risk of the progression of diabetic retinopathy."
Again, better bg control erases the risk that might be associated with DKA.
Hold on a minute ... you're completely misrepresenting my intent and perhaps that's my fault for not being clear. My intent was to suggest that correlation doesn't mean causation and that there might be other factors to attribute to the correlation.
Until a biological mechanism is suggested to explain the correlation I will continue to believe that DKA at diagnosis won't have a causative effect on later control.
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