The craziness of managing Diabetes in a child. An all and only about Type 1 Diabetes x's two in our house.
I'm not the depressed, obsessed, controlling, nagging, angry, and complaining person that this blog reflects. This blog is where I leave my daily Diabetes frustrations and move on. I do hope I can help others like us by voicing these feelings and being honest, helping you know you are not alone!
Maddison and I took a walk down "Bunny Trail" this afternoon, which is her favorite walking path in our neighborhood. We often see many bunnies hopping about there, and once we even found a turtle! She collected many interesting items to make a nature collage. We were talking about nature things as Maddison loves to do on the walk and as always, she shared some very informative facts that she learned by watching Animal Planet. Today Maddison taught me some things about Miami. She said "Mom, did you know that in Miami when the Crocodiles leave the swamps they invade the neighborhoods? Then the biologists and animal rescuers have to relocate them back to their own habitat so they survive and so that they don't eat people and other animals or pets. If they cannot relocate them, they have to be euthanized." These were her exact words. I just thought this was so funny and she used some impressive words. Very smart girl my Maddison is!
Did I mention how grateful I am for the past few days of Maddison's GREAT blood sugars? Maddison has been blessed with GREAT numbers since Tuesday, none over 150 and none under 70! She is still on a 200% basal rate for her cold, but WOW, amazing blood sugars considering the Thanksgiving feast and treats galore, Hannah's birthday cake, eating out several times AND fighting a cold! I am so grateful for these few days of peace with numbers.... I'm completely relieved from the stress of all the recent highs. These numbers couldn't have come on a better weekend. (yes, I do realize I worry too much about numbers)
In the OH NO! news category, my endo called me on Wednesday at work to let me know I need to come in sooner than my December appointment. It seems my TSH from recent lab work came in very low so we need to do some additional blood work. Unfortunately, I have had Thyroid nodules ever since I can remember. I am over due for a follow up Ultrasound on my Thyroid to evaluate any changes. In months past I have had low TSH levels that have always recovered without the need to start medication, but this time I feel we are looking at the death of yet another part of me. Bye Bye normal Thyroid function! I'm not surprised, and I'm hoping for the best. I have been nauseated daily for weeks since our bout of the stomache flu and perhaps that just did me in. The GREAT news....my A1c came back at 6.1% which matches perfectly with my meter average. Of course now my goal is to get my A1c under 6% (ridiculous, I know) So, I have minor adjusting to do with overnight basals since I can't seem to wake up under 130. Overall, I am ECSTATIC for having a break with Maddison's chaotic blood sugars and thankful I am still a honeymooner with a very healthy A1c! Now hoping for an easy Thyroid answer........cheers to a great LONG weekend that is just beginning!
We officially survived BLACK FRIDAY shopping today for Hannah's birthday! The mall wasn't actually as crazy as I expected. Talk about a birthday meant for a 12 yr old.... Hannah received over $500 in cash (I think I used to bring in about $50 most at her age!) from family and Mom and Dad to spend as she wished. We also took Hannah to lunch at her favorite restaurant, and took her to get her hair done. We stopped for her favorite Jamba juice and then took her to visit our awesome neighbor and friend Lisa, a make-up artist who manages MAC cosmetics in the mall. She taught Hannah some make-up secrets and tricks and showed her how to apply the sultry eye make-up that all the girls wear these days. In the end, Hannah is looking just a bit too old for my taste, although she looks beautiful and her eye make-up is gorgeous indeed! (Hopefully not an everyday look, but fun for today!) Hannah set aside some of her birthday money to shop for her own Christmas Tree Angel, but we will have to return tomorrow and complete the shopping for the little girl she chose. What a generous and caring 12 year old I have!
Well, this is it. This is the last day/year that we have a pre-teen Hannah. Next year Hannah will 13! 13 is a year away and I'm already freaked out about it! Today my Hannah is 12!!!!
On 11-28-1996 we had our first beautiful baby girl. At 5lb 15oz she was just a tiny little thing, arriving nearly a month early, but I was completely prepared and surprisingly not nervous at all. From pregnancy to labor and delivery, everything with Hannah was the perfect new mom experience. (except the borderline Gestational Diabetes!)I never felt more beautiful or happy in my life. I LOVED being pregnant and was so sad when I didn't have her inside of me kicking around anymore. Despite my young age of 19, I couldn't wait to be a mom. I think I am just naturally a person of nurture. Josh was the perfect Dad-to- be and he was/is fabulous as a Father. We never imagined 12 years could fly by so quickly. From first steps and first words, to the first day of school, Hannah was a remarkable and loving little girl. She was filled with smiles, hugs, bright ideas and always left us laughing at her silliness. I miss my little girl!
I know that same little girl is still here hiding somewhere underneath the skinny jeans and eye liner. Although Hannah spends alot of time in teenage mode, she still has her silliness from time to time and loves to make others laugh. She is still very much a Daddy's girl.....not fair I say! Hannah is remarkable when it comes to understanding others and she has such compassion for everyone. Even when McCain lost the presidential elections Hannah said she felt bad for him because she was sure it was his dying dream to become President before he passes. Then she went on to explain in detail how old the poor guy is, leaving me laughing out loud! That's my Hannah!
All Hannah wants for her birthday is to go shopping! I'm not allowed to shop for Hannah anymore, she has to pick out everything herself. I guess I am am lame mom at the young age of 31! It seems she despises what I think she will like, and likes what I despise. Imagine that. Did I mention her birthday is on BLACK FRIDAY, the day after Thanksgiving?! Wow, she has no idea that is asking alot from me, a mom that hates shopping on normal days! So out into the chaos we will go, I am sure she won't let us bypass the mall, although I am still convincing myself she will. So HAPPY, HAPPY 12th birthday to my little girl!!! I love you more than you know!
Besides our health, our children and family, our beautiful home, the food on our table and the fact that Josh and I have good jobs, there are some weird and silly things I am thankful for. Some of these things that I am thankful for are even normal day to day items and places. Tonight as we have the usual dinner as a family, I plan on asking the girls what obvious, weird and silly things they are thankful for. It should be interesting since Hannah always has something very strange to mention. I love that girl. I am thankful that her sense of humor (or is that weirdness?) keeps me smiling!
Random things I am thankful for:
My camera that has captured priceless memories My feather comforter that I couldn't sleep without! My own office at work An employer that treats us as family and understands WHY I miss so much work! Cell phones that leave me feeling connected even when Hannah is away! Aunties making a place in my children's lives My stinky, hairy Golden Retrievers that drive me crazy The PAST experience of having 8 perfect golden Puppies! Febreeze!!! With three stinky Goldens it is a MUST HAVE! Our school nurse Our cul-de-sac street My treadmill that is patiently waiting for my return. The CORE excersize ball making crunches easier! My garden Grandma supporting Hannah's Club Volleyball wish The "bird lady" where Maddison volunteers The "horse lady" where Maddison rides Our dirt colored Travertine that makes my floors look clean when they are filthy! The fact I have been letting go of my obsessive cleaning! COFFEE! 1 carb chocolate milk mix A nice pair of slippers 70 degrees in Phoenix, the middle of November A rainy day My childrens school So many other things... I will spare you the boredom of reading!
Here comes the thankful part of Diabetes life..... Having Diabetes in the modern day, not years ago when we didnt have the same advances Maddison being dx'd at age 6 and not as a toddler Having Diabetes, a "manageable" disease, not cancer, MS, Lupus, etc. Insulin pumps Temporary basal rates! No more NPH! The members at Diabetesforums.com that taught me everything I know ChildrenwithDiabetes.com forums that listened, helped me grieve, rejoice and learn "D" bloggers, especially Penny, Scott, Sandra, Michelle, Kerri, Lynnea and Lea Our local support group families All Maddison's past news articles spreading awareness of Children with Diabetes Did I already mention our school nurse?! CGMS for people that need/want them Rufus and Ruby, Maddison's beloved Diabetes bears that bring her such comfort Maddison's ability to drink juice while still asleep 504 plans Diabetes making our family more compassionate and caring every day, in every way Diabetes bringing back the reminder to cherish each other and each new day
Our first overcast, rainy day in months is finally pouring down on Phoenix. I love the rain! Today is about to get very hectic. After school the girls and I will start to prepare all the yummy Thanksgiving fixings. I am very thankful my girls enjoy helping to prepare for holidays at home. As the usual Thanksgiving tomorrow, family will be coming to our house. So much to do, so little time. My Hannah was actually born Thanksgiving morning, November 28th at 8:38am in 1996. On Friday..BLACK FRIDAY, THIS FRIDAY.... my Hannah will be 12!! She is my turkey baby, I think that makes Thanksgiving even more special for us. I hope you all have a great holiday!! I'm sending wishes to stay free from the Diabetes demons, enjoy all the days food and festivities, think square bolus and rejoice!
Sunday Maddison started on a yucky cold complete with stuffiness, runny nose and sore throat. She surely has the blood sugar to prove that this is a yucky one! My poor Maddy just can't seem to catch a break lately. She has battled strep throat, colds, pink eye, bad pump sites and tummy flu just too often these last few months leaving her immune system depleted with high blood sugars as a result of the chaos going on inside that little body. The repeated illnesses haven't given us a chance to recover from one week to the next. And of course, the stress of school hasn't helped. I think all the highs leave her more susceptible to the germs and being in the school nurses office 4-8 times a day doesn't help either. My poor Maddy, she has really had the yuckies too many times since school started this year.
Maddy's eyes are quite a bit shadowed lately. She's tired and worn from all the repeated illness and high blood sugar spells this new school year has inflicted. Just like we can see the lows in her eyes, her shadowed look has been staring back at me for weeks now. I can't even remember the last time she had continuous "good" blood sugars. Why can't we just get a break from all the sickies? I am sure that would help alot by giving her numbers a chance to stabilize before going wacky again with another different ailment.
I sit at work and try to fight off the urge to call our school nurse today. Yesterday I sent Maddison to school on a 150% basal rate. It didn't help at all. She never went under 280 until she came home to me. WHY is she high at school and not so much at home? WHY? Right now the obvious cuplrit is the cold she is fighting. My poor Maddy, feeling tired and crappy from persistent, continuous highs.
I'm not going to call....I'm not, I'm not, I'm not. I sent Maddy off today on a 200% basal rate. I know her nurse hasn't called yet because she is fine. I spoke with her this morning to let her know of Maddison's DOUBLE basal rate for her cold and she assured me she will call if she sees anything unusual. Sad, 200-280 is actually NOT unusual for Maddison these days. Precisely why I am up so much at night. I have to keep her under 150 at night, every night in order to give her back some health and time to recover from the school day highs. Nightime seems to be the only time of day in my control right now, the only time that makes sense or is easy to adjust. My poor Maddy, I promise I am doing my best to keep you healthy and feeling good!
This news release came out over a week ago. There is so much talk in the Diabetes community about wether or not *THIS* is potentially the answer to our prayers. For some reason, hearing it the first few times I didn't really think much about it. Just another "possible" break through I thought. But after another really frustrating week with Maddison's crazy highs and lows I felt I needed a dose of hope for the near future. So I tracked down the video again. This time I was already completely emotional and feeling defeated. I couldn't believe the words even after hearing them hundreds of times, "A possible cure for Type 1 diabetes". It was shocking this time, I cried and truely felt hopeful. I really believe we are getting closer.....my heart aches because I want this so much for Maddison and all the kids like her. We have reason to HOPE in the near future, we really do.
Last night our Golden Retriever "Harlee" who is just 10 months old continually went over to the pool to drink. Maddison noticed and said "Mom, if Harlee gets doggie Diabetes would you pay for him to have an insulin pump?" Hmmmmm.....
Look at this needle! For those readers that aren't aware of what this needle is, it is a pump site needle. Insulin pump users inject this every time we change a pump site, at least every three days. The needle is pulled out and a thin "cannula" remains under the skin. For the first entire year of pumping Maddison never complained about site changes. She never flinched. She never made a sound, and never felt but a small pinch. She has been comfortable using just a few areas for her pump sites, but now those sites have become bruised and scarred so the insulin isn't absorbing properly. A few weeks ago when we tried to go back to using her tummy she had a very painful site change. She screamed out in pain, which for her takes alot. But like other little kids, she just doesn't have enough chubbiness to find new areas for her pump sites. We have no choice but to venture to other areas, chubby or not. Understandably, she has become fearful of site changes. All I can say is "I'm sorry" and hope she understands that we just don't have a choice.
Tonight after battling high 250-300's all day, it is apparent that Maddison's blood sugar isn't responding to just an increased basal rate and hourly corrections. It isn't just a few wrong carb counts. By bedtime she is 433, (also a wrong night for pizza!) so the site must be the culprit, right? I sure hope so. That would be an easy fix, I would prefer that. I just hope this craziness isn't the after math of last weeks stomach virus deciding to WHACK EVERYTHING OUT! Now I just had to convince Maddison we need to go back to her tummy. On Sunday I had let her go back to her favorite place (upper butt) and the numbers by the second day proved to be whacky. "Do the tummy or try an arm?" "There isn't another choice." I had to say. Her tears and pleading started immediately as they have the last many site changes. Talk about just wanting to hide. I can't help but feel horrible for coming at her with that damn needle in hand. I can tell her it won't hurt, but she knows too well that you just never know. I feel especially bad tonight for it is now 10pm, she surely is tired and feeling crappy, even emotional from running in the high, high range for hours. True, once the needle hits it is in, and usually the pain is just instantaneous. But she is just a little girl that doesn't want to be poked anymore!
After 5 minutes of Maddison crying and pleading I decided she wasn't talking herself out of her fear. "WAIT! STOP! JUST GIVE ME A MINUTE! I WILL SAY WHEN!" I could wait all day and she just freaks herself out more as I wait for her to give the "Go". She gets all worked up and exhausted because of this new fear, it breaks my heart. My poor Maddison. Good news, she hardly felt her tummy site tonight, but I sure felt her fear. Not only did I feel her fear but I felt her sadness, her every tear and her relief once we knew the site change was in without a painful jab to a muscle. I'm so frustrated again tonight having to put her through all this. The 100 finger pokes the past week, her missing class for the many lows, many highs that rob her of her feel good energy. Our crazy ER trip from just a little stomach bug. I'm tired of it all today. Mostly, I'm sorry. I'm sorry that all I can say is "be brave, stay strong" "this is just a normal site change!" Well, a site change isn't exactly "normal" for anyone, and certainly not for little kids! I'm sorry that THIS is our normal.
I tried to do my own arm site the other day and I jabbed myself straight in my triceps muscle. HOLY MOLY did THAT HURT! I even had tears welling up in my eyes. I honestly flinched the next few times I had to change my site, and I am a grown woman. It makes me feel horrible that Maddison is stuck in this fearful hesitant stage because of one horrible site change. And, I totally understand. I hate that tonight she felt helpless and scared after being tormented all day with 300 blood sugars. I'm sorry that she goes through this so often and all we can say is "I'm sorry"
Maddison understands why we have to use new pump site locations. She can tell you all about absorption issues and the importance of avoiding scar tissue. She understands we just want the best for her health. We had a brief but honest talk after all her tears tonight, and all she said was "I'm sorry mom".........SHE said she is sorry that she lost being brave! I could have lost it right then and there as the tears welled up in my eyes. I had to remind her of how brave she is every day with Diabetes, and she agreed with a smile. I'm so sad that she apologized to ME.
Last week Maddison started her first horse riding lessons! She has been eagerly awaiting since her birthday in August for the weather to cool off. Another hot one today in Phoenix....87 degrees in November!
I have to say, I sit anxiously waiting for her riding time to be over. I can't say that I dislike horses, I just dont like an animal that is so powerful and can decide to kick you in the head, bite you or stomp on you just because he is having a bad day! Yeah...I guess I just dont like them! It must be some childhood trauma, I dont know. As much as Maddison loves her 2 hour lesson each week, I hate for the day to come around. I'm honestly nervous the entire time. She looks like she is about to slide off, the dust gets in my eyes, the horse trots a little too fast, the other horses make too much noise that I am sure they will make Maddison's horse freak out.... I know, I worry too much. I'm proud of myself though! I made it this far to actually allow Maddison to get ON a horse. I swear this girl has made me a braver, stronger person.
Maddison's riding instructor is an awesome lady, much like the "bird lady" from the rescue where Maddison volunteers. She is soft spoken, enthusiastic and takes the extra time to really make Maddison feel proud of her efforts. I'm very grateful we found these two inspiring women for Maddison to look up to. They each have a passion, and they have both built their lives around it. I don't think I could wish anything more for my child than to pursue her passion, whatever it may be. Maddison is always assuring me she will grow up like them someday. I have no doubt in my mind she will, that's for sure.
Sunday the tummy bug Maddison had caught up with me. I don't know what felt worse, the fever or the constant vomiting. Luckily we had the RX Maddison received for vomiting after her visit to the ER and the second dose (after 6 hours!) eased my vomiting fairly quickly. I was able to set a temp basal on my pump to avoid lows, and hoovered in the 90's the entire 28 hours thereafter. Urine ketones showed high, but blood ketones were just .3 so I did my best to sleep it off. I survivied. I still feel like death, I'm dizzy mostly, so I am going to take it upon myself to go back to bed now. I hope no one else out there gets it!
In 2007 and 2008, the theme of World Diabetes Day is Diabetes in Children and Adolescents. Diabetes is one of the most common chronic diseases of childhood. Type 1is growing by 3% per year in children and adolescents, and at an alarming 5% per year among pre-school children. It is estimated that 70,000 children under 15 develop type 1 diabetes each year (almost 200 children a day). Currently, an estimated 440,000 children live with type 1 diabetes globally.
Diabetes in Children and Adolescents
Diabetes is one of the most chronic diseases of childhood. It can strike children of any age including infants and toddlers. World Diabetes Day focuses on children and adolescents to raise awareness of the diabetes and its impact on children. Every child has a right to a long and healthy life.
No child should die of diabetes Diabetic Ketoacidosis (DKA) is the most common cause of death and disability in children with type 1 diabetes around the world. Children die because their families cannot afford the medication they need Many children with diabetes in developing countries die soon after diagnosis. Despite modern treatment, over 50% of children with diabetes develop complications 12years after diagnosis. More than 200 children develop type 1 diabetes every day Diabetes is different for children Diabetes affects children of all ages All diabetes is on the rise in children. Diabetes affects children of all ages. Diabetes is increasing in children and adolescents. Care for children is best when a multidisciplinary approach is adopted involving health professionals from all areas that concern children. A child's access to appropriate medication and care should be a right not a privilege. Diabetes costs more than money. Children with diabetes can live full, healthy, and productive lives. Over 50% of type 2 diabetes can be prevented. Diabetes brings different challenges at different ages. Diabetes hits the poorest hardest. The World Diabetes Day campaign in 2007 and 2008 aims to:
Increase the number of children supported by the International Diabetes Federation's Life for a Child Program Raise awareness of the warning signs of diabetes Encourage initiatives to reduce diabetic ketoacidosis (DKA) and distribute materials to support these initiatives
Today on Diabetes awareness day I woke up thankful that Maddison and I are alive and living happy and healthy with Diabetes. This day is just another day for so many others, but for us it has great meaning. As a parent of a child with Diabetes, I cannot overlook my opportunity to do my share today and help raise awareness. So here is even more important information that I wish everyone knew about Diabetes.....
In the days before insulin, diabetes was a slow but sure death sentence that typically struck children and adults under 30. Victims had constant thirst and voracious appetites, but wasted away when they could not process their food. Hospital diabetic wards were full of living skeletons.
At the time of the discovery of insulin, the only way to manage diabetes was through a diet low in carbohydrate and sugar, and high in fat and protein. Instead of dying shortly after diagnosis, this diet allowed diabetics to live but only for a few years at most. Victims eventually fell into a coma and died, frequently within months of a diagnosis.
Diabetes Mellitus is a medical condition known to physicians for thousands of years. References to this disease can be found in many ancient writings. Diabetes was given its name by the Greeks after their word for siphon. The term "Mellitus," Latin for honey or sweet, was added after doctors realized the urine of a diabetic person was loaded with sugar. A taste test was the original means of diagnosing diabetes mellitus. A taste test of urine to see if it was sweet containing sugar. It was often called the sugar disease or later sugar diabetes. However, the cause of diabetes remained a mystery until recent times. In the early 1920s, researchers strongly suspected that diabetes was caused by a malfunction in the digestive system related to the pancreas gland, a small organ that sits behind the stomach more on the left side of the body.
Since insulin was discovered in 1921, it has become one of the most thoroughly studied molecules in scientific history. Much of the insulin science and delivery technology has changed at great deal. However, one thing remains constant. In Sir Frederick Banting own words. "Insulin is not an cure" More work needs to be done!
TYPES OF DIABETES, THEY ARE ALL EQUALLY SERIOUS BUT TREATED DIFFERENTLY Although there are certainly similarities between Type 1 and Type 2 diabetes, there are even more differences. Type 1, which accounts for only about 5 to 10% of all diabetics, usually starts during childhood, whereas Type 2 is typically diagnosed during adulthood. Because Type 1 diabetes mostly affects young babies and children, it used to be call juvenile-onset diabetes. Similarly, Type 2 diabetes used to be referred to as mature-onset diabetes. Type 1 sufferers have a total lack of insulin, whereas Type 2 diabetics either have too little insulin or their body cannot manage its insulin effectively. Insulin is a hormone that the pancreas produces; it permits sugar to enter body cells for energy. The way that a person handles their insulin difficulties depends on what type of diabetes the person has.
The causes of Type 1 and Type 2 are quite different. Type 1 cannot be prevented – there is nothing that a person can do “wrong” to provoke the body to develop Type 1. Type 2, however, is generally thought to be preventable, although it can also be genetic. Type 2 may develop as the result of obesity or high blood pressure. Although most Type 2 sufferers are adults, there has recently been a rise in the number of young people diagnosed with this type of diabetes. The rise is often attributed to the increased rates of obesity among youths. The symptoms of Type 1 diabetes are usually very severe. A child will suddenly become extremely sick and weak, experience increased thirst, increased urination, weight loss and decreased appetite, nausea, vomiting, stomach and abdominal pain, and excessive fatigue. Such symptoms require immediate medical attention, usually hospitalization. Type 2, on the other hand, is often diagnosed before any symptoms are present. A routine physical is often what reveals that someone has Type 2.
Type 1 and Type 2 diabetes are treated in very different ways. Type 2 can often be managed through developing a healthier lifestyle; eating better, reducing sugar and carbohydrate consumption, and doing regular exercise will often be all it takes to manage the condition. Some Type 2 diabetics take oral medications as well, and a few even require insulin injections. Beginning a weight loss program is vital to obese diabetics. Type 1 diabetes cannot be managed so easily. Insulin injections, often multiple times daily, combined with a regimented diet, exercise and foot care, are all essential components to treating this type. Meals have to be planned with insulin regulation in mind. It is essential that Type 1 diabetics diligently keep track of their blood sugar levels by taking blood tests regularly.
While there are clearly many differences between the two types of diabetes, there are also many similarities. Both types put sufferers at risk for a plethora of latent health problems, such as kidney failure, blindness, heart disease, stroke, leg amputation and partial paralysis. That is why it so essential for diabetics to educate themselves continually about treatment options. Advancements in the medical community have made managing diabetes much easier than it used to be. My father was diagnosed with Type 1 diabetes when he was 32 years old – about 30 years ago. He used to have much bulkier blood-glucose equipment, and the machines required more than just a tiny drop of blood like today’s testing machines. Despite the strides that have been made, the most important factor has always been a sufferer’s willingness to be accountable and responsible once they discover that they are diabetic.
THANK YOU FOR HEARING ME OUT Please pass this information on to anyone and everyone you know. Diabetes is a very serious misunderstood disease. Although we live happy and healthy lives, we have to be diligent EVERY DAY in caring for ourselves and our Diabetes. We can manage the disease, but we will never be able to stop constantly adjusting insulin to control the disease. Every day is different. My child never gets a break from counting carbs and injecting insulin to assure she stays alive. My child cannot just run off to the park and play without her backpack full of emergency supplies. But one day, with every one's help in supporting awareness, research an education we will be able to see the promise of a cure become reality. Just like the discovery of insulin that keeps us alive everyday, we will find a cure. Researchers keep promising we are getting closer to a cure. I know some day that promise will be met. Take time out today to raise awareness. Take time out to think about what your life would be like without Diabetes. What a glorious life free of needles and poking our children would find again. Happy World Diabetes Day to everyone that has or loves someone with Diabetes! Together we stand as one.
I'm sitting here awaiting the next hourly blood sugar check for Maddison. The last 15hours have been total hell both physically and emotionally. The chaos of today started as any other morning. Maddison was complaining of a stomach ache, and since we had off school yesterday for Veterans Day, I knew she would be sad to go back to school. I figured she had a stress tummy ache. She whined ALOT. Lately she has gone to school without complaint so I did feel this could actually be a real stomach ache as much as she whined and moaned. She cries wolf alot to try and stay home from school and I wasn't entirely convinced, now I feel horribly guilty for sending her to school.
Maddison wouldn't get out of the car when we parked in the school parking lot. I was going to walk her in and check her blood sugar as always. She pleaded with me to believe her. Her BS was 62. Great I thought, now I really think she might be for real with this stomach pain. I decided to sit around in the nurses office and see this low rise instead of leaving it up to them and heading off to work. She went up to just 78, then 72, then 90. I'm now very late for work and I assure Maddison she can make it through the day although I really feel I should trust her and the way she is acting. She does look pale, but, she often does after being low of course! She heads off down the hallway to class and I just don't feel right about this. I guess you should always trust your parental intuition. I decided to stop for coffee before heading on my way to work in case the nurse's office calls and she is actually sick or continuing to be low. After stalling around getting some much needed coffee I start the 30 mile drive to work. I'm not even half way to work and my cell phone rings. Surprise! Maddison really is sick this time, and up came her breakfast as sooon as she got to class! Now I am turning around heading back to school and praying her BS stays in safe range. Talk about feeling guilty!
Maddison's blood sugar was between 60-90 over the next hour, with no breakfast carbs left to digest. Ketones are still clear on the blood ketone meter at .3 but the scariest issue is that she has alot of active insulin from her breakfast bolus. She will drink gatorade and regular Sprite but can't keep it down. I decide I am going to have to use some mini doses of Glucagon to boost her blood sugars. I called her Endo for dosing instructions. 15u of glucagon later she is 208. She continued to vomit at least every hour and her blood sugar would go up for only a short time and then drop back down again. A few hours later I had to double the glucagon as directed and ketones were now at 1.8 (zero is normal, over 1.5 you are at risk of DKA) and blood sugar is low 300's. Completely exhausted, Maddison falls asleep while I watch over her like a hawk knowing her blood sugar isn't going to stay at 300. 30 min later she wakes up to vomit and she is 108. Holy fast drop! Ketones are now 2.2 and I call the Endo back assuming we will be sent to the ER for some D5 and an insulin drip to stop the ketones and avoid DKA. Amazing how fast vomiting can become an emergency for Diabetics.
We arrived at Children's ER and the triage nurse is taking her sweet time, so I blurt out that Maddison has high ketones, vomiting and high blood sugar (even though she is now 152) Mentioning this puts the nurse into faster action thank goodness! I have to say, I am so excited about a new medication device for numbing IV sites in children. It is called the "J tip" and it is a Lidocaine (or something like that) air forced container that you place over the skin on the site to be numbed. Press a button, hear a loud SWISH and the numbing medication is instantly forced through your skin! WOW! Maddison didn't feel a thing when they started her IV. As always she was amazingly strong and brave. I'm so happy they have this new device for kids!
The staff is very nice, labs are quickly sent to rule out DKA. They check her blood sugar with one of the hospitals ancient meters that require a ridiculous amount of blood.....BS is good at 132. Bolus of Saline fluids is given with anti-nausea medication. Maddison feel so much better within the hour. Negative DKA. Her vomiting never came back. The craziness is this..... of the six hours we spent in the ER not once did they check her blood sugar again. Not once did they re-check her ketones. I continued all her Diabetes care checking both sugars and ketones every hour. Her blood sugar was stable in the 90-120 range but her ketones increased to 2.4 by the time they were planning to discharge us. The Endo came in to speak with us and assured me the high ketones were from dehydration, not from uncontrolled Diabetes. Um, yeah. I get that. I continued to ask him why we shouldn't be concerned that she still has high ketones after the multiple fluid boluses. I was instructed to stop checking ketones because it will just cause worry. I was told this is dehydration, not DKA....Um yeah....I get that too! But at what point do I need to worry that her ketones have been high for 10 hours!!? I can't give insulin to rid the ketones because her BS is low. She cant eat and her blood sugar is not budging with sugar fluids. I understand we have the ketones because the dehydration and illness, but I have always done alot of reading to prepare myself for the day Maddison has a vomiting and high ketones. From all my past studies, I really felt we needed dextrose IV with insulin before sending her home. I have listened to alot of parents horror stories of how quickly you go from no DKA to DKA so I assume this is where we could be headed if we cannot get rid of the ketones quicker! I know, I am not the Endo and I need to trust his knowledge, but I just felt nervous taking her home with high ketones.
Upon discharge I just couldn't stop my questions. I was nervous and an emotional mess at this point since I have never dealt with lows and ketones at the same time. I wanted to know why they didn't check her blood sugar, they said because normally they only do every 4 hours or so! I asked why they didn't recheck her ketones to make sure they didn't rise, they said because they already know she isn't in DKA. So my rational mind is thinking, ok...they treated the vomiting and dehydration and that was it. I was left to care for all the Diabetes management, which I am happy for and I appreciate.... BUT, what if her blood sugar was now HI and her ketones increase alot? They would have no idea because they never checked! I told the ER doctor how sad and scared that makes me. I explained why I was so confused with their care plan and they assured me she is fine with high ketones!!?? They had no interest in her Diabetes once she was cleared of DKA. I asked why they didn't want to know her BS before we went home, the ER doctor responded with, well lets re-check her blood sugar then before you go home. Oh, how nice of them! We were discharged home with instructions for managing Gastroenteritis. Nothing was mentioned about Diabetes! I wanted to know what to watch for as far as her Diabetes (even though I already know) I just felt SOMEONE should give me direction as far as how long are the high ketones "ok" and what the hell is the plan to keep blood sugar up (since it isn't going up regardless of anything!) Finally, they were irritated enough with all my questions and second guessing that they called the ENDO back. If blood sugar is over 250 and she vomits or appears to worsen we should return. Oh, gee....thanks. I left the ER feeling completely unsure of our entire experience.
I really am trying to make this as short as possible...Within an hour of getting home Maddison had some crackers. No bolus, (yes I know she needs insulin!) her blood sugar just wont rise enough to bolus yet. Her liver is depleted from all the vomiting and glucagon so we can't chance her going low over night. Now a fever sets in at 101.5 and she falls asleep. She finally hits 212 so I correct that with half the suggested to see what happens. I check her ketones and they are now 3.0!! AHH! So, I give the full correction and hoover over her as she sleeps. Luckily, her blood sugar stayed stable in the 120's all night and ketones dropped to 1.1 within the hour thanks to being able to give her insulin for the crackers!
Yesterday we still battled lows and high ketones. She feels great otherwise. She even helped me all day out in the yard. I know it will just take some time to get back on track. She isn't absorbing any carbs until hours after eating, so at this point all I can do is correct the high which will then clear the ketones. It has been a long couple of days to say the least!
I know we all have our own stories about ENDO's, ER visits, hospital stays and fighting illness with Diabetes, each very crazy in it's own way. I really doubted the decision to send us home with high ketones (I read to much about Diabetes!) but of course we were just fine. At the time I was convinced we would be added to the list of ER horror stories and end up back there in DKA within hours because the ketones that lingered. Our crazy visit actually made ME look a bit crazy for being overly doubtful of their treatment plan. I was sure I knew what was best for Maddison. All I have learned about ketones, vomiting and children with Diabetes was completely opposite once we entered that ER. All they seemed to care about was ruling out DKA, which I do understand. But WHAT if I was a mom that wasn't checking blood sugar and ketones during our hospital stay? What if we got home to HI blood sugar and ketones off the chart? What if Maddison took a turn for the worse? We would have had to return and make another 40 min drive to start all over. I just wonder WHY they dont watch blood sugar and ketones during the ER stay. I just don't get it. Overall we had great care and I appreciate them tolerating all my questions. I didn't learn anything except to trust the ENDO :) Hopefully we wont have to doubt them ever again.
I'm so irritated right now. Yes, this is just another blog post of me bitching about Diabetes. Where have all the "easy" Diabetes days gone!? The predictability? Today's issue is that it appears we are only getting 2 days out of a pump site. Yesterday after all the lows from the prior week Maddison began to run higher in the 180's-200's again. That was day 2 of her site. I just thought it was one of those back to school Monday's that stress her out and make her feel grumpy causing her to run higher. Last night (or is that this morning) Maddison was 150 at midnight. I corrected that (her target at night is 130) and felt safe without getting up to recheck. At 7am when I leapt out of bed late, she was 258. WTF!!!???
No school today, so I dropped the girls off at their Auntie's and they headed off to the zoo. Although Maddison had a correction and huge pre-bolus for her breakfast she was 252 at 3 hours post prandial!!!!!!!!!! I knew from this morning's high number that we must be getting "clogged" sites around day 2. I chose not to change her site, and I knew I should have. Now I am angry at myself for not taking 5 minutes to change it before we headed out for today. I guess somehow I always convince myself that it isn't the site. We have never had this problem in the past, until the last few weeks that is. Once I had said to a support group mom that we don't ever have failed sites....well, guess what happened the very next day? I guess I should keep my mouth shut.
We do need to venture to trying other sites for Maddison, I know. I just hate when we do her stomache and she screams. It freaks me out! Like most kids she is so skinny there isn't much to choose from. We tried the Sure T's and we hated them. Sure T's have the needle that stays under the skin. Who would feel comfortable with a tack lodged benethe their skin? Not someone that lacks fatty tissue that's for sure. I am hoping Maddison is okay at the zoo today, I did pack a syringe in her backpack but I am afraid if I have them rewind the pump to take insulin from the resevoir they wont reconnect everything right. Now I just feel horribly guilty for not changing the site. I guess I dont know for certain it is the site. Maybe this week is her high period after the low period! Who the hell knows! I'm feeling a little more grey every day lately that's for sure.
"Mom, when you are low, do you ever feel like you are going to die?" Hmmmm.....I paused for a minute unsure of what an appropriate response is for an 8yr old. I answered Maddison honestly assuring her that it isn't common for anyone to die from a low blood sugar. Once I started telling Maddison again of how the liver helps us overcome a serious low she lost her interest in the conversation. I didn't think much about her question until late last week when the school nurse and I realized she is again checking her blood sugar too often for feeling low at school. Today at school she has already checked 3 times in just one hour for feeling low. I have a feeling I should have paid more attention to this question last week. Maddison not only ran low all week last week in school but she had the overdose of insulin on Friday by the nurse's error. Then there was a 44 yesterday that caused a rebound. Not good. I wonder what she is thinking in that little mind of hers?
Sometimes I wonder if Maddison knows too much about Diabetes. Other times I think I haven't been teaching her enough. How much is too much? Part of my worries is that Maddison knew too much before she had Diabetes. We have too often visited my father in the hospital for Diabetes complications. It was common for Maddison and Hannah to spend alot of time visiting their Grandpa in the hospital, even as very young children. We were heartbroken watching his progression of losing his eye sight. We were traumatized by witnessing him have a stroke right before our eyes. We have spent endless hours keeping him company through many hospital stays for kidney failure, infections and illness. If I had known then that Maddison was even at risk for Diabetes I probably would have sheltered her from the truth of what was causing my fathers failing health.
When I was diagnosed I was honestly freaked out about potential lows. I wouldn't even go to bed with active insulin from a meal for at least a year because I was so afraid that I would go low in my sleep and not wake up for my children. I also had an idiot for an Endo and I lacked any education about insulin which would have helped me feel more confident and in control those first few months. This Endo also started me on a basal/bolus without explanation of how to balance the two. I had some serious lows from a too high basal amount so when this idiot started me on a fast acting insulin for meals I plummeted and wasn't able to recover quickly. So of course, right after my diagnosis I educated my girls on low blood sugars and the importance of helping me get sugar if I was too low to help myself, or worse, if I was to have a seizure. I showed them how to use the glucagon and call 9-1-1. Remember, at this time Maddison was only 5 and wasn't diagnosed until nine months later. I wouldn't have been so detailed and honest had I known Maddison was next to be living with Diabetes.
Maddison knows neither of us wake up if we are low. She also knows I check her overnight-always. I am sure all of these things combined is just too much information for her at the tender age of 8. I really think Maddison must be having some anxiety and has become afraid of lows, more so when she is at school because she knows I am not there watching out for her. I'm not sure what to do next to relieve her worries. As hard as I have tried to shelter Maddison from knowing too much since she was diagnosed herself, I know sometimes she is too much in tune for her own good. She is a very emotional person like me, and I know she picks up on alot of my feelings and reactions even if I try my best to "hide" them from her.
Now I am left to question how Maddison is really feeling these days. Maddison is the kind of girl that you have to pry information out of. She is never willing to share her worries and fears on her own. I will have to do alot of tip toeing around that little mind of hers and be careful to not to bring on other questions that will make her question even more! The mental game of Diabetes is exhausting lately, that's for sure.
Always be prepared. Always. It doesn't matter if you are just running to the nearest corner store. It doesn't matter if you are taking a quick walk around the block. Be prepared! Have more than enough to treat a typical low.
Cooler weather= changes for Maddison. She is having alot of lows. ALOT. Changed some things around. Still low. Same old Diabetes drama. I picked her up at school on Friday as usual except this time she was waiting out a low in the Nurse's office. She had been treated twice in thirty minutes for a persistant low. Hmmm. Very unusual for her. We headed straight to the mall to buy shoes and gear to prepare for Hannah's Club Volleyball tryouts this weekend. Within 20 minutes Maddison felt low. She was again 62 for the forth time all day. Treated the 62 with the last juice box in my purse. She is just 1.5 hours after lunch and had already been treated at school with 20c total so at this point so I was really starting to wonder if she may be getting sick. 20 min later, low again in the 60's. We need a time out to check her pump and figure out what the heck is going on. Give her the last 3 glucose tablets from my purse. Check pump history. Basal rate looks good, decreased from yesterday. Bolus history......WHAT THE HELL!!?? @#$#@#!!!!! Right there, plain as day it shows she was bolused twice for her lunch. Her lunch was around 50c, she was bolused twice.....100c!!!! Thank GOD she is the last class at school to have lunch or the nurse's office would be left treating a potential SERIOUS low while I was at work.
I was feeling very panicked knowing that by timing, her insulin is just about to peak at the 2 hour mark from lunch. Calmly (but with panic!) I called Dad and Hannah to come sit with Maddison. As soon as I was the next aisle over and out of view I took off running for the nearest ANYTHING! I'm guessing I looked like a shoplifter running through the store dodging through clothing racks, avoiding crowds and running down the escalator. You just don't care about people's stares at that point. Within 30 seconds I made it to a Pretzel Time and purchased two regular sodas and dashed back upstairs. She's 42 and looks horrible. Half a soda is all it took to get her back up to a lovely 108, I was surprised it was going to be that easy. I purchased some M&M's for her to munch and she happily recovered chatting away while I had to sit and calm my frazzeled nerves. The highest she went after this fiasco was 118 three hours later. Yikes.
I called the nurse's office to see how this happened AGAIN. I wanted to make sure they know I wasn't angry but more concerned of how this mistake could happen more than once this school year. It was a simple mistake, I caught it, but I needed to know if Maddison wasn't speaking up when they bolused her twice. She is supposed to be bolused half her lunch up front and then they bolus the remainder after lunch. The nurse explained that she multiplied by two instead of dividing her lunch by two. She was bolused today by the nurse, which normally Maddison enters her bolus under her supervision. Mistakes happen. I felt bad pointing it out to our nurse, she felt so horrible.
Note to self: Just when you think a few glucose tablets always do the trick, a mistake pops up and reminds you otherwise. If we see persistant lows I will promise to always check the bolus history before assuming we dosed just right. I promise to carry extra everything in my purse, especially being that there's two of us. Lesson learned.
Of course Maddison came home just fine from her first solo outing at the park last night! She had a ton of fun being outside where she is happiest. I didn't stress after I blogged my worries, but I admit the time couldn't come fast enough for her to come home! Thanks Scott for the reminder of old school Diabetes! I try to tell myself often that years ago Diabetes wasn't nearly as advanced as we are today. I can't imagine sending Maddison off ANYWHERE without a meter as moms did years ago! I don't know how Moms did it back then I tell ya! You think I am over protective now, I would have been Loco back then!
This morning I finally met the new young boy at Maddison's school that was diagnosed a few weeks ago at age 13. What a horrible age to be diagnosed. Peers, teenage hormones, just wanting to fit in, teenage attitude......oh my. By personality he isn't the most cheerful kid, he isn't even friendly or polite either. I also know from a past conversation with our school nurse that his parents are going through a nasty divorce. She asked me a few weeks ago if I had extra syringes to leave for this boy because his parents are arguing over who will foot the bill for medical expenses. He came to school with just a vial of insulin, four days after leaving the hospital from DKA. It sounds like the parents can't get their shit together and look past their own issues to even provide the best care for their son. It makes me literally sick to think about it. I am guessing they just don't know the seriousness of what he is going through. I want to take him out of the chaos of divorce and give him a place to cope with what HE is going through. I can't imagine the despair this young boy must be feeling. I can't help but wonder if he will even be ok. I hope his parents can come together and overlook their own relationship issues to help this time of transition. I am honestly thankful (in a weird way) that Maddison was 6 when she was diagnosed. I know Maddison will be fine....I know she will even surpass difficulties without question at that age. I just hope he will be okay too.
I've just let go for the first time since Maddison was diagnosed. I was calm and mentally prepared. Now I'm panicking a bit thinking of the "what if's"....... I let Maddison go with a friend from school to the park without anyone but her knowing about Diabetes. Of course, they went with her friends mom, and of course they all know she has Diabetes, but they don't REALLY know. I guess you could say they know of it, but nothing about it.
This was a last minute invite and instead of making an excuse as I would usually do with people that aren't close friends or family, I said "Sure" as though those words have been just dying to escape so Maddison could gain some much needed freedom. I typed up a quick "All about Diabetes" list for the mom, packed Maddison's little backpack with her meter, my cell phone, juice and candy. She is good to go. She was 148 leaving and had .3 active. Her pump said just .1 was needed to get her into a tighter range. I gave her 10c of goldfish and 6c milk and off she went. Just like that. I didn't even hesitate. I just did it as though I didn't have a concern in the world! I was still feeling proud and relaxed the first few minutes after she left, now 20 minutes later I am sitting here trying to avoid the worry that is starting to consume me. The mom looked puzzled as I handed her the Diabetes info sheet I made while telling her that Diabetes is a misunderstood disease. I just smiled and said she would be fine with her snack and all her supplies. That poor lady, I dont think she knew what to say. It is probably better that she didn't say anything or I may have changed my mind that quickly.
Deep breath.....I know Maddison is 8 now and has been learning so much the last two years living with this demon. I hope she doesn't feel low but is high. That would be too confusing right now for Maddison and the poor blindsided mom wouldn't know what to think. If Maddison wasn't having the confused feelings of high/low, I would surely have more confidence sending her off on her own. Maddison is instructed to call if she tests for a low. I can tell you that the phone better not ring! I might have a heart attack right here and now as anxious as I am becoming. Actually I think I am more excited than anything. I feel good about this little trip Maddison is taking off on her own. This is the first of many times I will/have let go of my own fears, as unrealistic as they may be. Mostly I am proud right now. I am proud of myself for taking this first step and letting go, especially being the struggles we have been working to overcome lately. Mostly, I am proud of Maddison and the responsibility she takes every day. She has alot more maturity because of her Diabetes, I know that. I am picturing her now..... sliding, running, swinging.....happy as can be, and that is all that matters because I know she will be fine. I might just hug her a little tighter when she returns!
I came across this article from Children with Diabetes' monthly newsletter. It brought a smile to my face and left me feeling completely inspired by this one little girl and her family. They have reached above and beyond accomplishing so much to raise awareness and funds for Diabetes cure. They are truely remarkable!
Her website shows even more amazing efforts, it is truly heartwarming, inspiring and motivating. A reminder of what a difference we can each make when we believe in something. Emily's website At just ten years old you are amazingly determined Emily!
Back in August when Maddison started school her blood sugars during the day started to hit the fan. The culprit was obvious, she was nearing her 8th birthday and always has a growth spurt this time of year. Her shorts were too short and her feet outgrew all her beloved flip flops. Her basal rate increased by 150% just before school started. We had never had many highs during the day, nightime was usually when I chased numbers for these tremendous changes in insulin needs. As anyone who reads my blog knows, Maddison has had an extremely hard time adjusting to 2nd grade. School stress began to show through in her numbers the same time she was going through this major growth spurt. We battled 200's and 300's for several weeks. 300% basal rates didn't even help. I felt I had exhausted all efforts in getting this girl in range. I even had the poor girl eat the same exact breakfast for weeks while I tried to get things back on track. I had never seen anything like it.
Months ago Maddison began feeling low many times throughout her school day, she was always high. The headache, horribly tired and grumpy high. 280's, nearly every single day at school. She was going to the nurse AT LEAST 6 times a day for complaint of feeling low, headaches, stomache aches. You name it. On top of running high and feeling horrible she was desperate to get out of class. She is a school hater. She is bored to death to have to listen to anything that doesn't interest her. She has a horrible attention span, (even without the high blood sugar feelings!) and she doesn't have any classwork confidence. So we were testing her 12-15 times a day for her low feelings. We didn't have these same highs at home. But, we did have her complaining of feeling low alot, when she wasn't. So who is to say the reasons of her low feelings?
It isn't entirely feeling nervous or tired and high in class....though I know it exaggerates her feelings of low. Sometimes I confuse the high feeling with the low feelings. I hate that, especially when you have been running high and have to re-adjust to being in range. You feel so low and you aren't! It takes alot of mind power to convince yourself you will be okay and you aren't at risk. For now Maddison is just having to re-learn her bodies feelings. I'm very sad for what she is going through, especially now as she is finally adjusting to in range numbers at school. ((KNOCK ON WOOD)) I totally know how she feels and it breaks my heart. I know time will tell and hopefully this doesn't continue to be a problem. Her little fingers are mottled and scarred with little black finger pokes. The other day she tested 19 times becuase she was sure she was low. Then she ends up being so upset in tears pleading with me to trust her feelings. She threw her meter to the ground and ran for her room. We both had alot of tears before I could convince her to come out. I feel like nothing I said could help her feel better. I hate Diabetes today. I hate that it tricks Maddison into doubting her feelings. I hate that it makes her cry. I just want her to be back to good feeling Diabetes days again.
Saturday morning we participated in the 2008 JDRF walk for a Cure for our second year. Maddison was asked to come on stage for the opening welcome by the AZ Diamondbacks President, Derrick Hall himself! (she had been on stage with him previously at another JDRF event)She didn't have to say anything, she just held the flag for the National Anthem and threw out some T shirts and baseball caps to the crowd. She was very proud that they announced her name as an example of why we all set out to walk for the Cure. Maddison says she felt like a "very important movie star!" Our team "Maddison's Mutts on a Mission" had about 30 walkers this year and of course we had to bring our "Mutts" Harlee and Roxxie. We nearly doubled our fundraising goal thanks to some unexpected donations just days before the walk! I can't seem to thank our friends, family, or neighbors enough for their generosity and support, Thank you all so much for yet another great walk experience!
Maddison had her yearly Endo appointment yesterday. I was completely shocked to see her A1c come back at 7.2% being that she runs much higher at school. She hasn't had many lows either, so I guess I should feel like I am getting SOMETHING right somewhere. (Must be all the sleepless nights!)I was preparing myself for an A1c around 8.0% by reminding myself that I have tried my best to manage these last 12 crazy and stressful weeks of school. Of course I was telling myself one thing but honestly feeling like a complete failure. As always, despite a great A1c I still feel like it isn't good enough, and I know it never will be. I know my expectations are not realistic when we are talking about an 8yr old growing child, but in my heart I don't think I could ever feel satisfied if her A1c is over the 6% range. Right now anyway, I just can't. I expect more from myself, I expect to figure out every number. I know it isn't possible and I know there sometimes just isn't an answer. But knowing this doesn't change how I FEEL. I'm happy with the A1c, don't get me wrong. Maybe in the years to come I will realize I have to give in my unrealistic expectations, and no, I will not consider the CGMS at this time. I just can't imagine jabbing Maddison with another needle and having her attached to another component just so I reach my expectation of a lower A1c. I certainly couldn't handle another medical device to learn about, obsess over and troubleshoot. That wouldn't be a healthy thing mentally for me to take on right now.
So, our regular Endo is out on Maternity leave and Maddison had to see a new Doctor. He was very nice and listened to my concerns about Maddison's highs at school. Of course being the Doctor he is supposed to offer his suggestions on what we can change to manage those highs. And, I was offended. Ok, maybe not offended, but I get very irritated when all they can do is offer advice that I have already tried. I mean, what do I need these people for anyway? I know if we were to ever have an emergency situation I would NEED them of course, but geez. At this point in our relations I have no idea what they actually do for us except write our prescriptions. It just freaks me out that we, the patients with Diabetes, actually know as much about adjusting our life saving medication as the Endocrinologist! Is there any other serious disease that is as self managed as Diabetes? I mean really!? The solutions to the high or low numbers are obvious as far as what we as Diabetics are taught to adjust when seeing the patterns. We all know many times the obvious adjustments don't help, or worse, we induce a dominoe effect making all other numbers become out of whack. I don't think Endo's realize this happens often when making changes. So, it would have been nice if the Endo asked me first WHAT adjustments I have tried, and then offer his advice. That would at least make me feel like they know I am not a clueless parent. I guess I am looking for some acknowledgement that I am a parent that has educated myself by spending the last 3 years being obsessed with knowing all there is to know about managing Diabetes. Heck, I think we all know we have earned a CDE by now based on learned experience.
So, of course all he could offer as advice for school day highs was everything I have already tried. I was hoping he would have the solution or mention something that I never even took into consideration. He tried to convince me to change Maddison's basal rate back to the higher level (.15) for school days. I explained that when I made those basal adjustments even by small half hour increments Maddison would have too many lows. I pointed out that her sensitivity to insulin is 220 during the day and a basal adjustment did help on her more stressful days but crashed her on days when she felt good being in class. I mentioned the times I adjusted ratios, correction factors, location of pump sites...you know, the billion things we try. I would have loved to hear that he could cure her stress in the class room. That would solve the problems with highs for sure. No such luck. Yet another Endo appointment that was a waste of my time. Next time I just want the A1c result and I will spend that half a day doing something else that is at least productive.
I guess we are always left to continue adjusting and managing our Diabetes based around our own knowledge of self. I think we should call Diabetes "Self Managed Metabolic Disease" Maybe then we would earn some credit, CDE sounds nice, doesn't it?
Amazingly Maddison was in range all day on Halloween, she was even under 130 all day at school! It must have been the excitement! Halloween night we did the traditional pizza party with friends and family as we all gathered in the Cul-de-sac with tons of kids ready for trick or treating fun. We typically have around 30 kids in total over several families. It gets a bit chaotic to say the least, but always a fantastic fun time. Hannah was looking a little too old in her costume this year! YIKES!