Thursday, April 2, 2015

FAQs about Elisabeth's Diagnosis

Elisabeth after she had been treated for Diabetes.
 Love to see her smile again.
Almost everyone has asked the same questions over and over again about Elisabeth and her diagnosis with Type 1 Diabetes.  I figured it would be easiest to write a blog post about it.  Possibly because it will be a little therapeutic to write it down.  I will warn you I am pretty exhausted so my grammar may be off.

With what was Elisabeth diagnosed?  Type 1 Diabetes.

What is Type 1 Diabetes?  There are two types of diabetes - The more common one, Type 2 is where your body is insulin resistant and usually happens later in life.  Type 2 is very hereditary and is often a result of lifestyle or other health complications such as high blood pressure.  You can often control the effects  of Type 2 with diet and exercise.   Type 1 is where your body stops producing insulin and you are dependent on taking insulin in order for your body to be able to process the glucose in your blood.  I like the explanation on the Mayo Clinic website the best.  It is a plain and simple way to describe what is happening in her body.

Can Type 1 Diabetes be prevented?  No.  There is nothing we/she did or didn't do that caused her to develop this disease.  It was not that she ate too much sugar.  (a common misconception.)  The researchers are not 100% sure what causes Type 1 Diabetes.  They do know that it is a genetic disease and that it is most likely triggered by a virus.  A predisposition to develop Type 1 diabetes is passed through generations in families, but the inheritance pattern is unknown.  

What is her treatment regimen?  She must find a balance between insulin injections, eating a healthy, carb controlled diet and exercise.  She receives 2-3 shots of insulin a day and must check her blood sugars with a finger prick/blood glucose monitor before every meal and bed every day.  Her diet is limited to 45 carbs a meal and 15 carbs a snack.  Sweets are limited to special occasions.

How did you know to take her into the doctor?  Ever since Henry was born she hasn't been herself.  She has been very sad, whiny and always said she was too tired to do the things we asked.  She started to not make it to the bathroom at night and was constantly hungry.  We thought all of her behaviors could be explained by an adjustment to a new baby brother.  Then she started to really lose weight.  I thought at first she was just going through a growth spurt and thinning out.  Which could explain why she was eating constantly.  When her eyes started to look really sunken in, she seemed very depressed and Lance had to carry her to school on Friday, March 20th, I began to worry.  My friend Mara called to chat on that Friday and I  voiced my concerns with her.  The clue that tipped me off to possible diabetes was that my friend Mara said that Elisabeth had drank a half a case a water the week before when Elisabeth had spent the night. (That's a whole lot of water for being there less than 24 hrs!  She would get her own water at home so I never noticed.)  All the other indications that we had thought could be explained by other reasons now all made sense.  I remembered a little girl that was neighbors to my girl scout troop leader years ago was diagnosed with diabetes and the symptom she had was that she was thirsty all the time. I called the pediatrician immediately and set up an appointment. 

Side note:  I am forever grateful that my friend Mara was inspired to call me that Friday and that I remembered a story of a girl I only met once when I was 8 years old.  Both of these tender mercies remind me that our Father in Heaven is aware of all of us.

How long will she have this disease?  Her whole life.

Is there a cure out there for Type 1 Diabetes?  NO.  I write that in all caps because I can't tell you how many people have told us they read on the internet somewhere or know of a homeopathic doctor that can cure her of this chronic, life-long disease if we alter her diet or try some herbal remedies.   I realize all of those comments from others are made out of love and concern.  Here is what we have learned:

Type 1 Diabetes is very different than Type 2 (which in some cases can be controlled with a diet & exercise)  It is an autoimmune disease.  For some reason, her body sees the cells that produce insulin in her pancreas as foreign cells and it has been killing off those cells for awhile.  She only has about 10% of her pancreas still producing the cells that create insulin.  No change in her diet will restore the 90% of her pancreas that no longer produces the insulin.  No herbal remedy will stop her body from attacking the cells that produce insulin and it is only a matter of time before the last 10% of her pancreas will no longer produce insulin.  We have done our own extensive research and trust the scientifically-based research that has been published in peer-reviewed journals along with the health professionals who have devoted their lives to researching, treating and trying to find a cure for this disease.  Of course we pray that there will be a cure to this disease within her lifetime but are now focusing on learning how to treat her and help her life a normal, happy life.

How long was she in the hospital?  Five days.  She was admitted to ICU on Friday, March 20th for DKA (Diabetic Ketoacidosis).  She was a very sick little girl but luckily was moved down to the regular floor about 24 hours later.  The rest of the time in the hospital was to stabilize her blood sugar and to educate all of us on how to live life now.

Elisabeth the day she was admitted to the hospital.  

Can she eat sugar now?  Yes.  Within moderation.  She can still participate in birthday parties, Easter egg hunts, etc.  We just have to monitor her blood sugars and give her insulin if she wants to eat more than her allotted carbs.  The biggest blessing is that our whole family will be healthier because of this.

What kind of life will she have?  Honestly, a normal one.  People with diabetes who manage it well live long, normal, healthy & happy lives.  They can do everything anyone else can do besides be a pilot for a commercial airlines or go into the military.  The key is planning ahead.

One week after her diagnosis.
Love this beautiful, brave girl.
How is Elisabeth coping?  We are so proud of our brave little girl who has always hated needles.  (She is my child we have had to pin down when it is time for a vaccinations.)  She is mature and accepted her new life in stride for the most part.  There are good days and bad days, though, as we adjust to our new normal and she is still very young.  There are going to be some hard times ahead emotionally as we continue to adjust and try to figure out how to navigate school, extra curricular activities and normal things that we never had to worry about in the past - like going on play dates over meal times or grocery shopping at Costco.  This is a lifelong learning process for us all.

How are we, as parents, coping?  One. Day. At. A. Time.  Sometimes one hour at a time.  Having a newborn at the same time as this compounds the challenges exponentially.   But we have been blessed by service from so many people.  Plus my brother came out here for a week to support me (which was so necessary and I am so grateful to have him here!!!).  I know God is carrying us through and that we are very blessed to have so many dear friends and family who love us.

Elisabeth is going to be OK.  We are going to be OK.  We are blessed and know we will be better for this trial in our lives.

1 comment:

  1. I'm so glad you were able to get her treated and that she will be OKAY! You are a great Mom and will always do what's best for her! XOXO