This Candle is Completely Unacceptable at T1 Diagnosis, to Me………You?

Blue Candles A law.  There is no mistake about it; as soon as a bunch of people think that a law is a good idea to have on the books; it will almost immediately be met with opposition.  When someone introduces a law, it can stay the same on face value or it can be included in another bill.

Laws are good things, when you can get them on the books.
(Editor’s note: Of course I believe this candle is NEVER ACCEPTABLE……but for today’s article I’m addressing, specifically, newly diagnosed)

There are two (presently, that I am aware) initiatives that are being considered or trying to be introduced.  One is that every infant under the age of two is ‘screened’ for diabetes at their check-up; the other is that any signs of flu/virus like symptoms (throwing-up, dizzy, lethargic etc etc) that a blood test or urine stick will be administered to see if further ‘testing’ should be done to check (and diagnose) for the onset of T1 diabetes.

Anyone can request that these tests be done at anytime they visit a doctor’s office, but the question is, ‘who will pay for it’?  Now before we jump to ‘it’s always about money’, that may not always necessarily be the only factor.  Because if one took their child to be examined with flu/virus symptoms and the Doctor stated, “It’s probably the flu, or a virus, but I want to run a simple finger-prick (and/or) a urine test to see if it might be diabetes and we would require further testing.  But this test is not covered under your insurance but if it turns out that it is T1 diabetes and we do not know it, your child could enter into serious, serious trouble.  What do you want to do?”

There probably is not a parent in the world that would not pay to make sure, but it’s not asked…..and THEREIN lies the problem/situation/reality.  In most cases T1 is not on the radar.   By a huge and wide margin, more kids will test negative for T1.  According to “Kids Stats-US Gov.” there is an estimated 74.5 million children in the US in this year of 2015.  Hypothetically, let’s say 1/3 come down with the flu this year; round it off to 25 million kids.  Is it feasible to think that a law will be passed to require a finger-prick blood test and/or a keytone test that even, ultra conservatively, will have a price tag of $20 (all-inclusive); costing insurance companies a half a billion dollars?  It will surely be asked ‘…but ‘how many’ in percentages would be caught in that initiative to be cost-effective?’   I honestly do not think so.  The opposition from lobbyists and opposing view points would be massive.

This, unfortunately, is what I see as the very likely scenario to any law.  But how many will be impacted while we wait.   But don’t lose heart, I’m not leaving it at that point.  🙂

In as much as that is THE huge challenge to pass such a law; believe me when I tell you that many, if not most, doctors really want to get it right.   There is not a doctor alive who wants to live with a mis-diagnosis that results in a hospitalization for a child, or even death.   I JUST CANNOT IMAGINE THAT SCENARIO NOT SERIOUSLY IMPACTING ANY DOCTOR.

It is THIS approach that seems to be our best approach.  In so many cases T1 is just not on the radar when it comes to flu/virus like symptoms.  If someone came in, presented with these signs, and a doctor ordered the blood test, it will be given (I imagine) without question.  Why would anyone question it?  But the Doc has to see the need…..and THAT is EXACTLY where we, as a diabetes community, comes in.

So we are really talking here, about policy.  Ebola virus hits, it was a policy what to do; not a law.  And it’s here that I  think we need to turn to make anything happen along these lines, a reality.

I spend almost all of my free time at nights and on weekends exploring how to make this a reality.  I have made incredible advances in cooperation with the National Association of School Nurses who are diligently trying to inform/educate their membership to down load and distribute the warning signs of diabetes and what to do from our ‘GetDiabetesRight.org website an FB page; to anyone who comes to their school office with the onset of flu/virus-like symptoms.  We are reaching out to many other ‘heads’ of organizations to help preach the word of ‘getting that simple finger-prick or keytone stick’ to at least see if something else is not beginning.  We are aware that a diagnosis cannot be made from these two results however, it could strongly suggest that further testing needs to be done before a needed hospital stay, or even saddest fo all—-in death.

My report, entitled a Child’s Cry for Change, includes stories of missed-diagnosis children sent to me from parents around the United States.  It now includes the death of little Reegan in North Carolina and the more recent story of a child who was on death’s door because of the missed-diagnosis.  It includes what needs to get done.  It includes the change.org initiatives as well.  It’s over 40 pages and it took months to assemble.  It is not for widespread distribution but it is available to decision makers.

And it’s here where I can use your help.   I could not find the names and emails of the Health Commissioners across the United States.  And even if I had them, it would not mean the same coming from someone outside their home state.  So here is what I am asking for the next go-round in the Child’s Cry for Change initiative.  I’m asking you to look up the Health Commissioner in your state, and get their email.  Send it to me and in the subject line write Child’s Cry for Change and your state  (Child’s Cry for Change Kansas, for example) and send it to me at Karlya@optonline.net.   Include your full name, address, and phone number and I will send, as per your request, to the Health Commissioner in your state for consideration and copy you as well.
NOTE: The higest ranking health decision maker in your state MIGHT NOT be called The Health Commissioner- in your state—-it might be Health Director etc.—-kindly include their title when you send information.  Thank you.

I have reached out to key individuals in diabetes organizations and else where.  If laws ‘get on the books’ I am all for that but I am also firmly for not standing by waiting for such laws and for educating everyone who can impact this and make a difference…….and this includes parents who, otherwise, would not know.

As always, I welcome your input, your suggestions, and most importantly your involvement.  Perhaps I am naïve, but to me; NO ONE should die or be hospitalized because of a missed diagnosis of T1 diabetes—–NO ONE; it just does not make sense in my mind and it surely WILL NEVER be acceptable.  And I will not stop until we ‘make a dent’ with this initiative.

Thoughts?

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

0 thoughts on “This Candle is Completely Unacceptable at T1 Diagnosis, to Me………You?

  • Thanks for the information, I will reseaech the Iliinois department of public health for a commissioner, director, or the appropriate decision maker. Each state migjt have a different title for the appropriate person or agency. A tip to share with your readers.
    Thank you, Tom!
    Sincerely,
    Sheila

  • Do you already have the info for North Carolina? With your contact with Reegan’s family I’m thinking you may have those numbers already. My son doctors are in Virginia so I can try to find those too if needed.

  • Michelle Berman says:

    For me there are two issues to deal with. T1D with Classic Symptoms being diagnosed. And T1D with Flu Like Symptom being diagnosed. I dont believe a screening at 2 years old would have helped my son in any way? He wasnt diagnosed until age 7. And he had his physical earlier that year, with his blood sugar checked and was not Type 1 at that time. It wasnt until 10 months later that he was diagnosed because he had classic symptoms (increased thirst, urine and appetite but weight loss). He presented with classic symptoms of T1 and I took him to the Pediatrician. The Pediatrician DID A URINE DIP (POSITIVE) and a FINGER PRICK (Number was too high, would not register on meter). There was no further testing required by my pediatrician. It was confirmed in 1 minute. We were sent straight to the Hospital. His number was 680. We stayed for a week, numbers were controlled, education started right away. So, in my opinion Doctors need to be expected to test for T1D with classic symptoms. The second and equally if not more important issue is when a patient presents with more moderate signs and symptoms of T1D – a very critical time for needing diagnosis ASAP. When a patient presents with more moderate symptoms (headache, stomachache, vomiting, lethargy) the same symptoms as the Flu – a Doctor must be expected at THAT time to do either a urine dip or finger check — both will diagnose T1D on the spot, right there in less than a minute. There is no further testing that would be required in the doctors office. It is that accurate and effective. The urine dip is less costly than a finger prick, one or both diagnostic checks must be added to the Standard of Care Practices already in place (Temp check, ear check, lung check, throat check). As it is at this critical point in receiving a T1D Diagnosis or being misdiagnosed can be life changing/life altering for a patient to be sent home being told it is the flu. For millions it will be exactly that, THE FLU, but for thousands as we well know it is Type 1 Diabetes going undiagnosed and misdiagnosed causing children to go home and spend another 24/48/72 hours in DKA until they are eventually taken back to their Doctors with no improvement or taken right to the ER requiring much more advanced medical treatment and care including life saving techniques which they would likely not have needed to be subjected to when they were originally in Doctors office with the documented signs and symptoms of T1D/DKA (vomiting, headache, stomachache, lethargy) and not being tested for T1D via a urine dip or finger stick, but being sent home with an incorrect diagnosis of the flu, strep throat, etc.. I agree this is a Standards Of Care Practice issue that needs to be changed. When patients present with classic T1D symptoms (frequent urination/thirst/appetite and weight loss) and just as important if not more important when patients present with more moderate T1D/DKA symptoms (vomiting/headache/stomach/lethargy). If we are doing/paying for throat cultures on patients who present with headache and vomiting to rule out Strep Throat, then we MUST start doing urine checks/finger pricks as well to rule out Type 1 Diabetes. Basic Standards of Care Practices must be updated to include ruling in /ruling out Type 1 Diabetes when flu symptoms are present. This will save lives. This will lessen the amount of children being misdiagnosed with T1D and being sent home only to end up in the Hospital Emergency room in early to severe DKA. I dont have any connections for you. But I wanted to share that there really is no further testing needed at a Doctors office beyond a urine dip/finger prick to diagnose T1D when a patient has classic symptoms as well as moderate/flu like symptoms. A diagnosis can be made on the spot and the child can be sent to the hospital for a complete workup for treatment and education to begin. Not sent home misdiagnosed with the flu. Thanks Tom.

  • Michelle Berman says:

    Also, I have started sending letters to local area pediatricians to include ruling in/ruling out T1D with classic and flu symptoms in their practice while we wait for the legalities/practices changes to become universally approved and accepted. You may have seen what I requested of the DOC, by a Call To Action. Wherein I state ” I hope someone in the community can lead the way to make change happen by a petition or whatever steps are necessary” – I hope you can make it happen Tom! If anyone can, you sure can get the ball moving. This is what I shared on Monday. “A Call To Action to the ‪#‎DOC‬, Along with prayers and miracles, is there something we can do in honor of thousands of children and adults who have been and continue to be undiagnosed/misdiagnosed with Type 1 Diabetes, especially in honor of 5 year old, sweet Kycie Terry, who went misdiagnosed before finally being diagnosed with Type 1 Diabetes when her body went into Diabetic Ketoacidosis causing her to have diabetic seizures, cerebral edema, and coma? I believe so. We need to demand better standards of care practices with regard to diagnosing Type 1 Diabetes. When a patient comes into a doctors office complaining of increased thirst, increased urine and weight loss – doctors must be expected to rule in/rule out T1D. Further, when a patient comes into a doctors office for headache, belly ache, vomiting, lethargy – along with basic standards of care – such as checking temperature, ears, lungs and throat – pediatricians/doctors must be expected to check urine and/or blood sugar to rule in/rule out T1D. This can and WILL save children and adults from further complications of undiagnosed/misdiagnosed T1D. This practice can and will save lives. Too often as we all know, T1D patients, at a very important stage of being symptomatic for T1D, are being misdiagnosed with the flu, viral infection, strep throat, etc., and being sent home – only to find that within 24/48/72 hours later – there is no improvement and worsening symptoms appear and even more critical complications have set in and then many families go to the ER with their child now in dangerous DKA. I have read that CEDKA (Cerebral Edema DKA, brain swelling) occurs in 1% of children in DKA who have been misdiagnosed or diagnosed late. CEDKA is more common in children than in adults. CEDKA can be caused by the treatment for DKA as well as (for some) prior to treatment for DKA. As a community, who shares that a significant number of T1D diagnoses within our community were made in DKA from being misdiagnosed or diagnosed late, as well as a community who shares that a significant number of T1D diagnoses were made in their Doctors office via a urine dip/blood sugar test prior to being in DKA or in early stage DKA , I am asking for a call to action to not just sign a petition, but write to your pediatrician/doctor today, asking them to consider adding urine dips and blood sugar checks to their basic standards of care practices when patients present with early symptoms (increased thirst, urination, weight loss, lethargy) as well as and equally as important with more moderate symptoms (headache, stomach ache, vomiting, extreme lethargy). Upon seeing a patient with these symptoms, a pediatrician can easily do a urine dip and/or a blood sugar check and CAN IMMEDIATELY rule in/rule out Type 1 Diabetes. It is that effective and that reliable. There is absolutely no reason why any child should go misdiagnosed with T1D with these symptoms when in a Doctors office in the year 2015. Further, there would be significantly decreased risk of any children/adults being diagnosed with some of the more severe symptoms of DKA , which for 20 -50% survival is just too late. It is beyond my comprehension that the medical community has not made this standard of care practice mandatory. Thousands of families would have a chance to be spared from life threatening complications and long term damage if T1D could be diagnosed in a Doctors office, instead of misdiagnosed because a urine dip/blood sugar check was not required to be done, when ALL of the documented symptoms and warning signs of Type 1 Diabetes are present. By demanding better standards of care practices, many, but not all will be afforded the chance of being properly and quickly diagnosed with Type 1 Diabetes. We really do need to make this happen. We can’t make a cure happen yet, but we really can make a call to action for a better standard of care practices for diagnosing Type 1 Diabetes prior to onset of severe DKA . It is my hope someone in the community can lead the way to make this happen via a petition or whatever steps need to occur? In the meantime, in honor of thousands and especially sweet Kycie Terry, please write a letter to your pediatrician today asking them to consider adding a urine dip/blood sugar check when a patient presents with Flu like symptoms to rule out Type 1 Diabetes.” I also would love to see a commercial or PSA actually SHOWING a child drinking 10 glasses of water, running to the bathroom, not wanting to play….and well as showing a child with flu like symptoms — and expressing that this very would could be T1D not the Flu. When parents see it in action firsthand – it is much more relatable and educates and hits home – than just seeing warning signs listed on a computer. I will search for Pennsylvania contacts for you. Thanks so much. I am as passionate about this as you. In 2015, no child or adult should have to be misdiagnosed with T1D – especially when appearing with DKA symptoms being diagnosed as the FLU. Its not acceptable any more.

  • This issue is very close to my heart, my son was misdiagnosed by his doctor. He was 17 months old and I took him in concerned. The doctor looked at him and assured me it was just a virus, instructed me to give Gatorade and bananas etc., and he would be fine in a weeks time. Two days later, looking more gaunt, I had him in the ER where we learned his blood sugar was 880 and he was in DKA. After being air lifted to a Children’s Hospital, and spending a week there, we are now 15 months into his Type 1 Diagnosis. We are the lucky ones who didn’t lose our son, or have any catastrophic issues due to the initial misdiagnosis that could have taken his life. One solution I foresee, is if a doctor doesn’t want to pay for the supplies to check a child for possible diabetes, then he certainly, can advise a visit to the ER where they do have the blood checkers and could rule out or diagnose Type 1. All in all, I agree we need to raise more awareness, especially since Type 1 seems to be affecting more and more children as the years go by.

  • Angie Crawford says:

    My son, at 15 months old, was also misdiagnosed with the flu. Five days and many medical professionals later, he was going into a coma by the time the blood test came back in the ER. My husband is an EMT. He said that EVERY medical call requires a finger prick for a blood sugar reading!! I just don’t get it…

  • Melissa Mains says:

    I have 2 children with diabetes. One was misdiagnosed, the second diagnosed early because we knew the symptoms. I keep seeing the suggestion that the doctors should do a urine test. It seems to me that would be much less accurate than checking BG. Thoughts?

    • In either case, it is stated that the true diagnosis of T1 can not be diagnosed with a finger prick and/or a urine test. That said….doing either and keytones spilling or a high meter reading SHOULD be enough of a red flag to do more to diagnose T1. You are correct (IMO) that a finger prick would be better…….but in many cases, presently, NOTHING is being done when a virus/flu-like symptoms come into the office.

      • Michelle Berman says:

        Tom, I will send you the literature I found with regard to when a patient presents with classic signs and also early to late DKA signs (which mimic the flu)…a urine test and blood sugar test can give strongest indications that the diagnosis is T1D. It is true once the Doctor sends patient to ER with their findings of both their patient exam and urine/BG results, the hospital must run a blood test to get exact accurate levels of blood sugars to make the official diagnosis. But as we know the point can be argued, if it is the Flu then high levels of BG would not be found and sugar in the urine would not be found, thereby not being able to misdiagnose with the Flu and sent home. At that point with symptoms present and positive urine and high BG finding the patient would be sent to the hospital. How is diabetes diagnosed?

        A simple dipstick test can detect sugar (glucose) in a sample of urine. This may suggest the diagnosis of diabetes. A Doctor would send the patient to the hospital. However, the only way to confirm the diagnosis is to have a blood test to look at the level of glucose in your blood. If this is high then it will confirm that you have diabetes. In my opinion, the urine test and the BG test are enough, but than you for reminding me that was just my personal experience with my Doctor feeling comfortable telling me it was T1D based on symptoms, urine and BG. You are correct, the next step would be a blood test, but still that is better than being sent home misdiagnosed. I will email more literature to you. Many thanks.

  • Melissa Mains says:

    I wonder how early sugar would show in the urine. My son never had ketones so I’m not sure that the urine test would have shown anything. Fortunately for him we already had one child with D so we were able to check BG at home and catch it early. Most people don’t have that option. I guess I feel like the BG test in the pediatricians office would be the test to push for.

  • Stephen Szyszkiewicz says:

    You know, for a grass roots thing to happen, perhaps we should just simply take matters into our own hands. What if, for example, all of us with CWD sent a bottle of test strips, a meter, a box of lancets along with a nice letter to our pediatricians?

    So for example we could create a website where a parent can order up a kit and have it sent to the Pediatrician they specify. It would make a splash. It would show commitment on our part. Perhaps we can get the meter and test strip manufacturers to give us a break if we buy in bulk.

    My son was in bad shape at diagnosis. He was to the dr’s 3 times before they thought of a blood test, and then it took 12 hours for them to get the results. All of that time was wasted. He lost 15 pounds in a week. It could have been very bad for us.

    I really don’t think we need a “law”. We just need to get the doctors into the habit of doing it.

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