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A Father of A Child with Type 1 Child Warns: Be Prepared for Hypoglycemia


Dec 2, 2008

After years of worrying about highs, a father of a child with type 1 finds out how scary a low can be.

Magenta recommends that you get to know your glucagon. When it is time for a new kit, don’t not discard the old one. Open it, practice on a piece of fruit, and make sure all family members know where the kit is kept. And always keep a backup on hand.

My daughter Lauren was five days shy of her twelfth birthday when she was diagnosed with type 1. We were blessed with a child who could and did take the lead in her recovery and care. She never had any "teen diabetic rebellion" and never adopted a "why me?" mentality. Her health has been great, and her last A1c was 6.7%. With all the hormonal changes that can affect a teenage girl's body and thus change her insulin requirements, Lauren has always stayed on top of her care and never lost her fantastic personality.

Still, two and a half years after her diagnosis, we almost lost her. 

That January day, my wife was in one shower and one of the girls was in the other.

That is when we heard the sound that could only be made by someone falling down in the shower. My wife jumped out of her shower, and I hurried to find out what happened.

When I got to the shower, my mind started playing tricks on me. There in the bathtub, convulsing, with her eyes rolled back in her head, was my daughter. My mind flashed back several years to when our daughter Allison fainted one morning. 

 I looked down in the tub and started yelling "Allison, Allison!" I heard my wife scream "It's Lauren!" My mind stopped, then restarted. I looked down and I thought, "Diabetes!" The family jumped in to action; my wife went to call 911, Allison went to get the glucagon, and our son Zachary went for Lauren's tester and strips.

Lauren's body was limp. She was shaking, her head rocking back and forth. I can still hear the sound. It was the same noise she made as a baby, blowing bubbles with her formula.

When Zachary brought the meter, I tried testing her blood to find out her blood sugar number. The meter kept blinking "ERR," error. It did not occur to me that the shower was still pouring on us and the meter could not get a proper undiluted blood sample.

Allison returned with the glucagon. In two and a half years, we had opened and worked with at least four kits. I looked at it and had no idea what to do. Finally it came to me; I pulled out the syringe and broke it in two, right in my hands. I had destroyed it completely. Allison ran for the backup kit, and one thought ran through my mind: "Keep her alive until help gets here." The second kit came, and slowly, hands slippery from the shower and shaking from fear and adrenaline, I went through every step and put the needle into Lauren's arm. Then true fear struck. I had just spent the last three to four minutes focusing on what had to be done. It was done now. There was nothing more that we could do. Was it enough?

In an instant the fear became overwhelming. You see, the entire time that we were working to help her, I was screaming her name, demanding that she respond, trying to wake her from this nightmare. Now my screaming became frantic because the convulsions had stopped.

I had not realized that the shaking was comforting; it was a sign of life. Now Lauren was still. This time I was screaming her name because I thought we had lost her.

And then, her eyes opened. She was confused to the point of drunkenness and unable to speak. We tried to explain to her what had happened. As the emergency team arrived, we had her on the bathroom floor wrapped with towels. She was very groggy and unable to sit up by herself. We went to the hospital, where she was stabilized. 

Four hours later, she was working with a study group in our den.

What could have happened? 

Lauren could have died. She was suffering from severe hypoglycemia, an extremely low blood sugar during which the brain is starved of glucose, energy that it needs to work properly. Without this sugar "fuel," the brain starts shutting down bodily functions like breathing and heart beating. Death is only minutes away. Only an injection will help; the oral remedies that are the daily treatment for low blood sugar are of no use.

What had happened?

Lauren had awakened that morning feeling low, so she took some glucose tablets. It was the correct thing to do, except that she did not test herself. That was mistake #1. She didn't know just how low she was. We will never know. 

She then started her day. She did not wait for the glucose to get into her system, and she did not re-test 10 to 15 minutes later, the standard practice to make sure you've stabilized. That was mistake #2.

Then she got into a hot shower without enough energy. That, combined with the quick change in body temperature, made her brain say "goodbye." 

After two and a half years of "doing what she needed to do," Lauren cut some corners.

Lauren had no memory of the event or its aftermath. Lauren was fine. But I was not. The comfort I had let myself feel has never returned. Maybe it is better this way. 

My advice to parents of kids with diabetes

Get to know your glucagon. When it is time for a new kit, do not simply discard the old one. Open it, work with it, and make sure that all family members know where the kit is kept. 

I want other parents and caretakers of type 1s, and the diabetics themselves, to truly understand how dangerous lows can be.

Yes, highs can be extremely dangerous if untreated and ignored. But extreme lows can become deadly very quickly.


Categories: A1c Test, Blood Sugar, Diabetes, Diabetes, Hypoglycemia Unawareness, Insulin, Living with Diabetes, Low Blood Sugar, Meters, Type 1 Issues



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Comments

Posted by Anonymous on 2 December 2008

Mike,

You handled well and it is certainly sincere warning to all of the parents with kids having T1DM.

Nothing is more painful in this world than watching own kids suffer.

Thanks for sharing your experience with us.

Posted by Anonymous on 2 December 2008

The medical profession is preoccupied with HYPERglycemia, yet the data suggests that far more patients die of HYPOglycemia (approximately 2-4% of all deaths in patients with type 1 diabetes is attributed to HYPOglycemia; far less than DKA!)

Posted by Anonymous on 2 December 2008

We have been in a similar situation and it is terrifying. You are numb with fear but must make yourself act because you know that the only chance for your child's survival rests with you. I totally agree with you. Parents should practice and practice with the glucagon because one day, it won't be practice.... And make sure that you have more than one kit in your fridge because when we used ours last, the needle broke as we prepared the glucagon so we too needed the second kit to be able to give that essential life-saving help to our child.

Posted by Ines on 2 December 2008

I can relate so well to your article. Nothing scares me most than a sugar drop. My son, who is 10 years old with Type One since he is four, has also scared the world out of me on a few occasions with severe hypoglicemia. It is not only a scary experience for them but for us parents too. Your article is proof of that.

Posted by Anonymous on 2 December 2008

Thank you for sharing, my daughter has had some scarey lows but never a seizure!What a great idea to practice with old glucagon injections. Im going to share this with the school nurse and family members.
thanks

Posted by Anonymous on 2 December 2008

I pray that we will never have to go through what you went through. As our glucagon expires, we practice mixing. Also, we take other outdated ones to her school (elementary) so that staff can practice.

Posted by cardiomomof4 on 3 December 2008

Thanks for sharing your story. I had a similar experience with my daughter who has been a Type I since age 7. Her blood sugar was fairly well controlled so we were caught off guard when she went into insulin shock at 4 AM in our hotel at the PA State 4-H Horse Show. She was scheduled to show her colt that day and set her alarm to get up at 4 to groom her horse.When she didn't respond to the alarm, I went to wake her and found her in insulin shock. She had packed her own supplies. It was a frantic time of dumping suitcases and bags to find the glucagon. We must have been loud calling her name because we woke the people staying next door. We didn't even waste time checking her sugar. She responded within minutes after the glucagon and after stabilizing her and getting food in her, she showed her colt and won first place in the state! So my message is...never be caught off guard. Always know what to do in an emergency because it happens without warning.

Posted by Anonymous on 3 December 2008

Powerful story! Excellent advice! Clear and to the point.

Posted by Anonymous on 3 December 2008

My spouse has had Type 1 diabetes for many, many years and we had always squeaked by without needing Glucagon -- he'd be just aware enough to down some soda or fruit juice if I yelled at him loud enough to get him to focus. Then the day came that I couldn't get a response out of him and I knew I had to use the Glucagon. That's when I realized that I was too paniced to read or follow the instructions the instructions in that tiny, tiny print. One trip to the emergency room later I took out an expired kit, practiced with it several times (not the shop) and wrote up my own very simple instructions and printed them in huge letters and posted them on the refrigerator. I won't forget again, but if I do panic I have my own guide to get me through.

Posted by oakhaven on 3 December 2008

I've been a Type 1 for 46 years and maintain tight control with Humalog & Lantus (enough to keep the A1C below 6%). Well, as you can imagine hypoglycemic conditions (and the unaware cases tend to worsen with age) are part of my life.

First, you handled your daughter's hypoglycemic condition correctly. And you properly pointed out what happens as a Type 1 when you "cut corners".

Second, while not minimizing the risk of hypoglycemia, an unresponsive condition is not as life-threatening as might be expected. Over the last 10 years I have experienced approx. 30 cases where 9-1-1 had to be called when my glucose fell to the 16-29 range. The latest one was just 8 days ago. The body is remarkably resilient. Each time I "awaken" with no ill effects except for a feeling of hypothermia that takes several hours to resolve.

Third, consider having your daughter use a Continuous Glucose Monitor (Medtronics and Dexcom are two suppliers). If you keep the receiver within 5 feet of you (even when showering) it will provide an audible vibration/signal that a hypoglycemic state is approaching. (And nicely the diabetic can track glucose levels every 5 minutes and respond on a proactive basis to approaching hypoglycemic or hyperglycemic conditions.) In my case the CGM has reduced the incidence of 9-1-1 calls by 80%. (Yes, a week ago I failed to insert a new sensor and thus the CGM was silent as I fell into the 20s. This reinforces the danger of "cutting corners".)

Posted by dorisjdickson on 3 December 2008

I understand Dad's need to tell the story of Lauren's very extreme low. However, stories like this really concern me.

I too was diagnosed at age 12 ... my birthday present I've always referred to it. I have never felt the denial, depression or rebellion that I heard about.

I have also (after 32 years) never had the extreme low Lauren had. I've never had the need for glucagon. I've never been unable to treat my own low blood sugar.

I consider myself fortunate because when I was diagnosed we did not have glucose meters and we treated with large doses of insulin twice a day, instead of the many small doses I now use and the 15 times a day I test my blood sugar.

I want parents and newly diagnosed patients to know that not every type 1 or juvenile onset insulin-dependent diabetic WILL have a low that includes a seizure, passing out, combativeness, or memory loss. It is more the exception than the rule.

That does not mean that following some safety "procedures" isn't necessary. It is. I highly promote and embrace caution, high testing frequency and preparedness. I teach it; I write about it.

But please, do not think that such scary situations will happen, have to happen. They just do not happen to everyone.

Doris Dickson

Posted by Anonymous on 3 December 2008

I'd like to share one comment. I think the real issue here is that the family was praising a 15 year old for being in charge of her own diabetes care (which is a good thing, in part) but the problem becomes when the family assumes that the teen has it all under control . Teens do not. It is up to the family to double check numbers, to instill in the teen the responsibility to test, treat and recheck and in the case of a low, to let someone know. That's most important. Knowing how to use glucagon is great, but avoiding the situation in the first place would have been better.

Posted by Anonymous on 3 December 2008

Thank you for this story and all the postings. I am type 1 for over 40 years and need to test often as I cannot tell if I am going low. I wish the researchers would work on a small patch that could be put on my skin each day that would only change to red if it could sense a glucose level below 70-80, the diabetic could then respond by using the common glucose tabs or food quickly. Maybe another patch would be for high readings with a differt color code, maybe black for high readings maybe over 225-250. I think this would promote a quick test to confirm, but also a quick glucose tab to prevent. My alc 6.4 Now I will get my glucgon RX refilled. Helene in ND

Posted by Anonymous on 3 December 2008

The recounting of the nightmare you and your daughter experienced that day was touching and emotionally draining just to read as we have been through the same thing when our son Danny had a seizure at 2 1/2 years of age--he is now 13. It is amazing how in a panicked state it is so difficult to concentrate as you pointed out when breaking the first Glucagon needle. Doris Dickson's comment in my opinion is unwarranted. The author of this article isn't saying that this will happen to everyone but that HUMAN ERROR can lead to possible life threatening consequences. I can attest to the fact that many Type I's sometime in their life--and let's face it--it only takes one event like taking short cuts (not properly washing hands before testing to prevent a false high BG and then bolasing for the false high, not eating the correct amount of carbs to the insulin delivered, etc.--will make a dangerous error that will potentially harm them or someone else (driving a vehicle and have a bad low, for instance. Humans are humans, most people are not perfect in managing their diabeyes and things can go wrong; all one has to do is look at the many people overweight and realize that even though they know that being overweight is a potential health hazard, few do anything about it. At any rate, I'm glad that your daughter is fine and appreciate you writing about the experience. I always say to my son that when he goes to college would he mind if I move in to the abutting dorm room so I don't have to worry about his diabetes. T.D.

Posted by jools on 4 December 2008

well, well, well,again i read the same old problem about low low sugar levels. the whole problem that we all face is being given the new lantus insulin lantus. i was on that as a trial insulin about 5years ago and i had so many hypos i was conected to 000 the ambulance service over hear in australia everyday that i was useing that wonderful insulin because no matter how much glucos i took i was always in insulin shock almost dead. i tried contacting lantus to tell them the big problem with their new great insulin, and guess what. they never got back to me to talk about the life thretening situation, instead they go and change the insulin called glargine to lantus and trial it still in the hospitals. what a cheek. so i think if you all got into the web and atarted reading in to the complants about that insulin you all would find that most people are useing it. it will be the death of alot of diabetics now and in the future. any genneticly modified insulin that they make to treat us will kill us. so i hope i have made sence in what i have spoken about to all you diabetics to make sure you know what you put in your body and do not just except what they say about any new insulin they bring out. jools

Posted by wiser on 4 December 2008

I am a diabetic for 8 years and it is the hard for me to keep my sugar under control. I live in the Caribbean and we sometimes have the types of food that a diabetic suppose to use but it is always either to expensive or there is none. Most time I am depress and don't know what I should do,for many years my parents try many herbs, tring to control my sugar and nothing works, now i am living on my own and I find it hard to deal with it.

Posted by Anonymous on 4 December 2008

I have had type 1 diabetes for over 36 years now. During those years, I have had many scary insulin reactions. No matter what the reason for the reactions, it is SO important for us to tell co-workers, spouses, parents, children, or friends about what to do in case of an emergency.
My little daughter (6 years old) called her daddy when I was pregnant to tell him that "Mommy is laying on the floor and won't talk." My husband rushed home and administered glucagon to bring my blood sugar up. Everyone around me knows how to help me if I get too low. After awhile, you get hypoglycemia unawareness, so always remember to test and not to guess!
I am grateful for insulin, but I am EXTRA grateful for glucagon. It can (and has) saved many lives.

Posted by Anonymous on 8 December 2008

This article gave me an incredible flashback to the time my oldest son had a low in almost exactly the same fashion...in the shower one morning. You never ever get over seeing such a thing happen. It is a blessing that they do not remember what happened to them during the event. The rest of the family does, however. My son, diagnosed at 8-1/2, is now 20 and manages a pump wonderfully on his own. He has not had another of those episodes since. His younger brother, diagnosed at 9-1/2, is now 18 and has never had one; seeing what happened to his brother was a shock but a learning experience too. Spouses of grown diabetics please take note...do not be afraid to learn how to use meters and glucagon kits; you may be the one person available to save the life of someone you love.

Posted by Anonymous on 9 December 2008

A CONTINUOUS NON INVASIVE MONITOR WOULD BE THE ANSWER TO PREVENT HYPOS. WHY CANT WE GET ONE IN THE 21ST CENTURY . THE PHARMACEUTICAL COMPANIES ARE MAKING TOO MUCH MONEY OFF STRIPS. PLEASE HELP US TYPE 1 DIABETICS!!!!!!!!

Posted by Anonymous on 9 December 2008

A NON INVASIVE GLUCOSE MONITOR WOULD PREVENT HYPOS. PLEASE HELP US TYPE 1 DIABETICS WITH ONE URGENTLY . FATHER OF 5YR OLD DIABETIC GIRL

Posted by Anonymous on 23 December 2008

Researcher-- make a skin patch to be applied daily that would go blue if BG was at 70-80 so a quick small snack could be taken, or anothr patch that went red when the BG was above 200mg so a finger stick could be done and the next insulin dose or food carb intake could be adjusted. After 45 years, my fingers are almost gone from so many tests to check BG. The number is not relevent unless it is very low or going too high. Please invent this patch soon. I thought there was some research in Europe to try to do this. we will still need meters, but may avoid sever lows by seeing them sooner. Now I need to go and test again as I seem tired, and may be low or high--unknown. Thanks for all the information. ND Lady

Posted by shosty on 24 December 2008

This is a good time to remind, or inform, people that EMT's cannot administer glucagon. They are allowed to do glucose gel only, which is not very useful in a situtation of seizure or unconsciousness- and they can transport. That's it.

Paramedics are allowed to do glucagon but more commonly administer IV glucose/dextrose.

This seizure occurred in the home, and the parents were there to do glucagon.

However, on so many other situations: school, sports, friends' houses, walking around downtown, shopping, on and on, People must rely on emergency services for hypoglycemic emergencies.

Please, please join me in advocating for changes in EMS regulations in your state, that would allow EMT's and first responders to do glucagon to save our childrens' lives.

Parents got Epi-pens approved, we can do it with glucagon too!

p.s. state health regulations also prevent school nurses from training lay people to do glucagon, meaning teachers and staff- what does your child do on field trips on which there is no school nurse? Play rehearsals? Soccer games? So many schools rely on EMT's in these situations, which is WRONG- and give parents a false sense of security!

-mom of child w/diabetes, diagnosed at age 4, now almost 19

Posted by Anonymous on 18 January 2009

I always remember my mom telling me she was going to film me during a reaction so I could see why she was so upset when I came to. I don't necessarily wish that on anyone, and the frigidity of her ideas we won't discuss here, but I know it was tough on them seeing me convulsing, falling down the stairs, and being lashed to a gurney. I can't offer any advice to a parent--Type I is why I've never wanted or tried to start a family--but I will say to be very attentive to her good attitude. I had a GREAT attitude that eventually fell apart. I was diagnosed in the late 70s, and psychological treatment was unheard of then for the diagnosis in children, unlike today. I regret not ever allowing myself to become angry, to not ever once even have the inspiration to ask "why me," or recognize and acknowledge that I was heading into something that my brother and friends had no idea about. This really manifested in college, and I regret the effect it had on my GPA and other areas that could have remained intact and healthy had I been willing to get mad. Just a thought. And YES, consider the Continuous Glucose Monitoring, if she can handle yet another piece of plastic being attached to her. I'm not egotistical at all, but after a month of the CGMS, I'm already a bit tired of the life-planning that goes into using it and the fact that I've got yet another little piece of plastic keeping me trucking.

Posted by Anonymous on 2 February 2009

Just had this article forwarded to me today--Michael, you're a real hero to share this story with everyone--not all dads could admit to breaking the syringe or misrecognizing who had fainted or their fear and panic. You're some kinda writer, too. With love from Dr Grandma


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