Diabetes –how you know

In the comments of my previous diabetes post Dawn asked  “Would you mind explaining why a person can get sick enough to require hospitalization when they are first diagnosed w/ type 1 diabetes?” and then Bridget asked “Michele, how did you know Maggie was in trouble and had to get to the Dr. in the first place? What are the signs to look for? I know it can be an emergency situation.”

So how do you know?

With Maggie we didn’t.  She started out by being thirsty a lot,  but it was April and the weather was getting warmer so I didn’t think much of it.  The she started needing to go to the bathroom more often.  I had a very small bladder as a child and I have little girls who are similar so again I gave it no thought, plus she was drinking lots of water so of course she would need to go to the bathroom.  She got thinner, but we have pretty skinny kids and experience tells me they tend to thin out when they are getting taller.  That’s what both Tim and I thought was happening.  She was tired.  I thought she might have a virus (though she had no other symptoms.  No stomach pain, no vomiting, no fever and she had a very good appetite ).  And sometimes I thought she was just being lazy.  I hate to admit that now but I did.  Overall though she just wasn’t herself and it was after a few weeks of gradual symptoms that I started to think something was going on.  I thought maybe it was something emotional.  Something that was bothering her so I tried talking to her but she insisted there was nothing, she was just tired a lot.  Still, my gut told me something wasn’t right.  I went to bed Saturday May 3rd praying that God would unravel the mystery of what was wrong.

Sunday morning Maggie came in my room and said her chest hurt.  Her breathing was somewhat rapid and her heart was racing.  I stayed home with her while everyone went to Mass and I called her godmother who is a CRNP.  She came and looked at her but was also puzzled.  She thought maybe it was the flu but with no fever. . .  Still she suggested we take her to the after hours clinic that her office has in town so we made an appointment for later that day.  But Maggie was quickly going downhill.  She could barely get up to go to the bathroom and her breathing seemed quite labored.  Tim said he thought maybe she was sick in her stomach because she had a funny smell on her breath.  I called the Dr. she had an appointment with and he suggested we take her to the ER.  He said if she needed oxygen they didn’t have it at the clinic so off we went.

Sunday afternoon the ER was packed with people.  At this point Tim had to carry Maggie because she was too weak to walk and we were both getting very scared.  They got her into triage right away and told us that she would be the next person called because of her condition.  When they called her moments later we followed the nurse back into the main ER area and I will never forget that moment; the nurse directing us said nothing but gave a look and gesture towards us so that every other nurse and doctor jumped to their feet and descended on her.  At that moment I was terrified.  The doctor immediately asked me if there was diabetes in my family –to which I answered “no” –”That’s what it is” she said. Immediately in my brain everything clicked.  The thirst, the frequent urination, the hunger, the tiredness, the smell of her breath, it all made sense. And I felt terribly guilty for not knowing sooner.  For letting it get so bad.

They tested her blood sugar right away, it was over 400 (which at that time meant nothing to me) and immediately put an IV in to give her fluids and insulin (the insulin took a while to get but they started fluids right away).  She was then transferred to Penn State Hershey Medical Center by ambulance.  I was able to ride along while Tim drove our car.  She was in constant care for 3 days and then sent home.  She went from being listless to her lively old self in no time.  It was amazing!

So what happened?  Maggie was in DKA or diabetic ketoacidosis and she was clearly very critical.  At that point of DKA organs start shutting down and coma ensues.  Thanks be to God we got her there when we did.

She had sugar in her blood but without enough insulin it couldn’t get into her cells.  Insulin is the “key” that unlocks the cells and lets your body use sugar for fuel.  Without insulin she had no fuel so in an effort to survive her body started burning fat and muscle (thus the weight loss - which in total was almost 10 pounds –she gained it back in just a little over a week!).  Once she got insulin all that stopped (though not immediately and the insulin need to be given in small does because dropping blood sugar too fast can cause brain damage).  The hardest thing for me while she was in the hospital was having her beg me for food.  They would not let her eat anything for the first 24 hours because it would only prevent her blood sugar from coming down and she was SO hungry.  She pleaded with me to give her something to eat and it just broke my heart that I couldn’t.  I knew it was for her good but oh it was so hard.

So how did we know with Matthew?

Well we know that siblings have a 5% chance of developing the same disease and both Tim and I automatically felt we should watch Matthew because he had shown symptoms of low blood sugar in the past.  Two weeks ago tonight he kept coming downstairs after being put to bed and was asking for cold water.  He also kept having to use the bathroom.  On an impulse I grabbed Maggie’s blood sugar meter and tested his blood.  The meter read Hi which means it is over 400.  I took a breath and did it again with the same result.  I showed Tim and we were both dumbfounded. I checked his urine for ketones and it was negative.  I called Maggie’s godmother and she said “Take him in!”.  So at midnight two weeks ago today we took him to the ER.  He wasn’t sick.  He was bouncy and bored and just had to pee and drink a lot.  The wait was much longer and when we finally got his blood tested it read greater than 600 on their meter so they have to take blood from his arm.  It was 665.  The doctor came in to talk with us and we told him what had happened.  We told him that our 8 yr. old daughter has diabetes and he said “You understand that he does now too right?”  I nodded my head but I don’t think I really believed it yet.  Matthew was able to be admitted to the Peds ward there and not taken to Hershey.  He didn’t need IV insulin, just fluids and then we began his shots.  He wasn’t critical because we knew what to look for but they still wanted to watch him so he too was in the hospital for 3 days.

Are our other children at risk?

Yes, they are and we hope to have them tested for islet antibodies very soon.

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From the children with diabetes website:

Symptoms of Diabetes

Once over 90% of the beta cells are destroyed, the body is no longer able to regulate blood sugar levels and the patient develops some or all of the classic symptoms of diabetes:

• excessive thirst
• excessive urination
• excessive hunger
• weight loss
• fatigue
• blurred vision
• high blood sugar level
• sugar and ketones in the urine
• Kussmaul breathing (rapid, deep, and labored breathing of people who have ketoacidosis or who are in a diabetic coma)
• vaginal yeast infections in girls (even infants and toddlers)

While the symptoms appear abruptly, the development of the disease actually occurs over a much longer period of time.

If you suspect that you or your child has diabetes, contact your doctor immediately. Untreated type 1 diabetes can lead to a very serious condition called diabetic ketoacidosis, which can be fatal.