Monday, February 16, 2015

An Ounce of Prevention

Do you know the signs and symptoms of Type 1 diabetes?  

*Excessive thirst
*Frequent urination
*Bedwetting
*Changes in appetite
*Rapid weight loss
*Lethargy or marked decrease in energy
*Sweet or fruity smelling breath
*Warm, dry, flushed skin

Some of these signs mimic symptoms of common viruses such as strep or flu.  Sometimes they occur simultaneously with a virus. Recently, it has been discovered that there is a viral component to the onset of Type 1 in some children.  Of course, there is also a genetic predisposition, but in many cases, a common virus will be the catalyst that triggers Type 1.  In fact, Jaxson's onset occurred following a bout of strep that manifested in scarlet fever.  I only knew to suspect diabetes because I was aware of the obvious symptoms.

So it is quite easy, and unfortunately common, that many children get diagnosed too late.  There are many times the underlying disease is just waiting to rear its ugly head and hides in the guise of a common cold or flu.  Just a couple of weeks ago, a precious 5 year old girl named Kycee fell victim to this scenario. Her siblings had recently had the flu, so it was assumed Kycee's symptoms were due to the same.  However, she ended up going into diabetic ketoacidosis, slipping into a coma and suffering brain damage as a result of undiagnosed Type 1 diabetes.

This incredibly heartbreaking situation could be completely avoided with a simple test.  I, along with several other T1D parents, am making a call to action for pediatric physicians.  All that is required is to make it standard protocol to perform routine urinalysis on children. 




Dipstick urinalysis is an easy and inexpensive test.  Depending on which kind of test strips you use, they cost anywhere from 20 to 75 cents per dipstick, plus the nominal cost of a plastic urinalysis cup...or a Dixie cup, for goodness sake!  

And if you want to talk in a language that doctors and clinic administrators understand (no...I'm not referring to medical terminology), the procedure code 81000 (Urinalysis, by dip stick or tablet reagent for bilirubin, glucose, hemoglobin, ketones, leukocytes, nitrite, pH, protein, specific gravity, urobilinogen, any number of these constituents; non-automated, with microscopy) carries a reimbursement value of around $10 per test.  So yeah...imagine that...there's even money to be made for early detection and diagnosis!

Therefore, it should be standard protocol that any time a child presents with symptoms indicative of a common cold or virus, bedwetting, changes in appetite, frequent urination, weight loss, flushed skin or rash, or excessive thirst...A SIMPLE URINALYSIS SHOULD BE PERFORMED!  It should also be made standard protocol for this test to be done at well-check and yearly visits.  

One child spared from coma, brain damage, and/or death should definitely be worth the 20 to 75 cent cost of the test...and the time it takes to pee in a cup!


I tell people all the time ~ you have to be your own best advocate...and your child's best advocate!  Speak up for yourself and your children.  Request this test.  In most cases, you'll get a negative result for spilling glucose or ketones in the urine.  But...if that little glucose patch turns brown or the ketone patch turns maroon...it just might save your child's life!

Sunday, February 15, 2015

A Million What Ifs

What if he's had this longer than we've known?
What if the doctors had tested him like I asked them to do when he was younger?
What if everyone, including myself, didn't think I was being overly paranoid about him becoming Type 1 because of witnessing my sister dying from this disease at the age of 30?
What if I had been more careful about him being around other kids with viruses?
What if he had never gotten strep?
What if we hadn't have been "overprotective" and taken him in that morning and just kept thinking it was symptoms of a virus?
What if I had met my husband and had children when I was younger?
What if I had married and had children with someone else?
What if I had undergone genetic testing?
What if I had been more careful about the things I ate when I was pregnant with him?
What if I breast fed him too long?
What if I didn't breast feed him long enough?
What if I had only fed him organic food and never taken him to McDonalds to get a happy meal...or two...or a hundred?
What if I give him too much insulin?
What if I don't give him enough insulin?
What if he is still in the "honeymoon phase" and he won't always be this easy to manage?
What if there is something I could do to prolong this "honeymoon phase"?
What if I am not feeding him the right things at the right time?  
What if I could combine traditional and holistic medicine to make a difference for him?
What if his endocrinologist found out and got mad or offended?
What if he gets low and doesn't recognize it soon enough?
What if I have to ever give him Glucagon? Should I test his blood glucose before I give the shot? Do I call 911 first? Will I mix it right?
What if my cell phone battery dies, I don't have my charger cord, and I have to call 911?
What if I happen to sleep all through the night?
What if he has a critical low in the middle of the night?
What if I don't catch it soon enough?
What if he doesn't wake up?
What if he catches a virus?
What if he starts running fever?
What if he throws up?  How quickly can I get him to the ER?
What if I live too far away from the ER?  Should we move closer to a major hospital?
What if I forget his insulin bag?
What if I drop his bag and his insulin pen breaks?
What if he has a low in public?  Will I have enough glucose tabs, juice, and snacks in his bag?
What if someone notices him injecting in a public place?
What if they say something?
What if someone says something rude or insensitive to him?
What if he resents me someday for having to always be the bad guy, constantly making him eat and take his insulin?
What if he rebels when he becomes a teenager and doesn't want to take good care of himself?
What if he grows up and decides to drink a beer?
What if he gets an insulin pump?
What if I can't figure out how to use the pump, a CGM, and connect it to the cloud?  For Pete's sake, I can't hardly connect a cable box and make it work with the TV!
What if I can't learn everything I need to know to give him every advantage I can against this disease?
What if he's active and it pulls his pump access cannula out?
What if we run out of supplies?
What if my husband gets laid off and we lose his insurance coverage?
What if our medical bills keep adding up and up and up?
What if I have to drive my old Trailblazer another 10 years?
What if our credit is effected from all our medical bills and we can't move even if we want to?
What if the daily stress of this illness takes too big a toll on all of us?
What if my fears and neuroses are cast upon my child? 
What if something happened to me?  Could he take good care of himself?
What if I had to get a job and he had to go to regular school? Would he be able to manage and would anyone ever care anywhere near as much as I do about his health?
What if he gets a mosquito bite and it gets infected?
What if he gets a foot infection?
What if he loses his eye sight?
What if he gets peripheral neuropathy?
What if he loses a limb?
What if his organs are damaged?
What if he has to go on dialysis?
What if he gets coronary artery disease?
What if, God forbid, what if I lose him before he loses me?
What if he gets his heart broken by someone who doesn't want to marry a diabetic?
What if he has children who also become Type 1?
What if the conspiracy theories are true...and big pharmacia and politicians are holding each other's hands and preventing a cure because of money and greed?

What if I could be an advocate and voice for him?
What if no one wants to listen to me?
What if I face the same prejudices and detractors I have faced in our homeschool journey and they just discredit me as some overprotective, strange, helicopter parent?
What if my lack of information, education, strength, stamina, awareness negatively effects my child?
What if I lose my composure and smack the next person who doesn't live with Type 1 that tells me he will get used to it and things will get better?
What if it is always this hard and we don't get any closer to a cure?
What if this is as good as it gets?
But what if...what if...there is a cure?
Yes...what if my son sees a cure someday?
What if he no longer has to live with this disease every moment of every day for the rest of his life?
And that is the hope to which we all cling and for which we all pray...every moment of every day!
What if...what if...what if!!!