THANKFUL

     In light of the month of November, as well as Diabetes Awareness Month, I wanted to take a moment to say the things that I am most thankful for, as related to diabetes. (Of course, 30 things for the 30 days of November).

I AM THANKFUL:

1. That my husband has a job that enables him to take time as needed to go to Dr. appointments and the miscellaneous things that diabetes throws at us. Years of working 50-60 hours per week are now paying off.
2. That my husband has a job that enables me to be a stay at home mom and allows us to have the ability to pay for the best care available for diabetes.
3. For our pediatric endocrinologist and his diabetes education team. Every single person I have met in the local D community or fellow doctor raves about him and for good reason. Unfortunately I’ve heard he’s stopped taking on new patients because his existing ones are so numerous. (Not for sure though). Also one of his diabetes educators is a fellow D-mom, which makes me really feel that someone TRULY understands what we are going through. She was also our nurse when M was diagnosed, as she was in her last weeks in the Special Care unit before she left for the pediatric endocrinology office.
4. For the Dexcom technology which has already saved my daughter’s life at least once. If only this had been around 13 years ago, my cousin’s life wouldn’t have been forfeited to D.
5. That my daughter was able to receive the pump less than 2 months into her diagnosis because we weren’t able to dose her properly before.
6. That I was already pregnant when she was diagnosed, because I always wanted several children and I don’t know that my husband would have agreed to a second child after M’s diagnosis. It is an emotional and financial strain you cannot be prepared for, one that you want to give everything for and leaves you in doubt that you have the strength for anything else.
7. For the TrialNet program that will test our newest child for the possibility of D.
8. Although she is so little, in a way I am thankful that she did get this so young because she will never know a life without it so everything will be a way of life for her instead of a huge change.
9. That she is rather protected in her young age against diabetic complications from high blood sugar. We are still figuring out dosing and foods and would be that much more paranoid about everything if there was a huge possibility that she could have permanent damage for our mistakes.
10. That we even have insulin. Before 1922 my daughter would most definitely already be in the grave right now. She is such a bright light in our lives, I hope I never see it eliminated.
11. That my husband is on top of everything with d-care. I trust him to make decisions in her care as much as I trust myself. With as much stress as there is in having a toddler with D, it is such a relief to be able to escape the house on occasion and not worry about anything d-related.
12. That my daughter is a good eater, which means that we can bolus her before a meal and know that in one way or another we will meet her carb count. Toddler’s are picky eaters but she is pretty steadfast on eating a variety of food and a good quantity of it.
13. That she is as patient with us as she is. She lets us do her blood checks 90% of the time with no fuss, and the other 10% is normal toddler behavior of not wanting to sit still while we take her out of the action for a check.
14. That my family knew all about diabetes before this. Unfortunately my cousin passed away from a low in 2000, after which my mother was a fanatic about any d-like symptoms. She even kept the urine strips in the house to test my younger brothers on occasion. So I knew the signs of diabetes and it helped me diagnose my own daughter.
15. For a great online community of fellow d-moms and dads who share advice. The early months were like a black hole for us and we spent a lot of time online researching about the disease, tips on care, advice on products, etc.
16. That we are getting free speech therapy through a state program for developmental delays. Hopefully this will get her back on track from any delays D contributed to.
17. That my newborn daughter is such a good baby. Minimal fuss and a great sleeper. Since week 5 she has been sleeping 7-9 hours per night. It is such a relief, especially since M didn’t sleep more than 4 hours straight until nearly 6 months old. It allows me to stay (relatively) sane and not sleep deprived, which would make it so much harder to take care of M.
18. For our extended family. My husband’s cousin sent us the expanded Pink Panther D book after we finished the abbreviated version our Endo gave us at diagnosis. My aunts and uncles all do fundraising for JDRF, and have done so for over ten years already. One aunt is on the board of her local JDRF chapter.
19. That I previously held a job in a medical office, where I did medical insurance and appeals. It has aided me so many times when dealing with hospitals, Dr. offices, and insurance companies. You cannot believe how many denials I’ve had to fight in the past while working, which in turn sharpened my skills for personal use. Also now that our health coverage is being cancelled due to Obamacare, it is aiding me in knowing exactly what pros and cons each replacement plan has.
20. For the other parents of Type 1 kids who have developed products for D kids, such as insulin pump pouches in cute fabrics fitted to their tiny waists or custom D alert bracelets. Adult sizes and patterns just don’t work for kids.
21. For the restaurants that actually provide carbohydrates counts for their foods. (Cracker Barrel, you are really disappointing).  Some are really great at this, even though their food isn’t super great for you. McDonalds labels EVERY item in the Happy Meals with carb info, and IHop has a nutritional menu you can ask for. Chikfila even stores their carb info inside their registers, with a printout available for any item on their menu. Others have the information on their websites or have provided it to other websites. Hardest are the mom-pop type places since nothing is standardized or analyzed.
22. For organizing products that can be used for D products. So far I’ve used a Caboodles makeup organizer as our main D supply station (see other post), a makeup bag for our D supplies on the go, another makeup bag for our emergency carb stash in our car. Glass tumblers we use to amplify the vibrations of our Dexcom alerts, and a three-tier plastic container holds extra pump batteries, syringes, test strip solution, and extra meters.
23. For our local fire and health departments, who provide sharps containers free of charge. We can also drop them off with no charge.
24. For the website I just stumbled across, safesittings.com. I don’t know how I didn’t find this sooner than I did with all my research on Type 1 diabetes and resources for it. We don’t have a lot of sitter options so this could well prove a godsend. We have already started initiating contact with a local young woman with Type 1 to become our backup sitter.
25. That my mom moved up to our area last year. She couldn’t stand not being nearby after M was born, so she picked up and left her house, job, and community that she had been a part of for over 25 years. Four hour drives were way too much and I am so happy to have her here for support.
26. That my husband’s mom is so committed to being able to keep M for future grandma visits that she even started counting her own carbs to be able to better learn D care.
27. For the pharmaceutical companies who supply vast quantities of samples to their reps. We have received insulin, test meters, a ketone meter, recipe books, and more free of charge. We spend so much money on D care that it is nice to get something for free! (Even if it’s only so we spend money on their products in the future….yes, I have a marketing degree, I know how that works lol).
28. That we live in a country with great access to care, as well as economic prosperity. Type 1 kills untold numbers of kids in poor countries because their parents do not have the ability to see a doctor for a diagnosis. They do not have the internet to discover the cause on their own. If they are fortunate enough not to die of DKA before they are diagnosed, then they may not have the money to pay for the newer insulin which is more predictable, or perhaps any insulin at all. They may not have the money to pay for test strips, let alone insulin pumps and CGM’s. I shudder at the thought of not having every single thing necessary to care for my daughter.
29. For smartphones and the ability to peruse the internet in a restaurant, or out and about. Having access to carb counts in foods, or contact numbers not previously stored in the phone are so very helpful. Bye-bye pager, I haven’t missed you at all since you’ve been gone.
30. For my friends who have supported us through this diagnosis. I can vent on Facebook or over the phone and know that my friends will be there. Even having a distant friend clicking “Like” on a post is a great comfort because it means that people are listening and understanding what I am going through. When you feel alone on an island, it helps to know there are at least people on the mainland still waving to you.

The Dreaded Dexcom Rash

     If you’ve read my previous posts, you already are getting a sense that I LOVE our Dexcom. It is literally a life-saver and we are way too paranoid to not know what our daughter’s blood glucose is doing at any given time. (The saddest country song has it more together than my daughter’s blood glucose stability).  So suffice to say, about a month ago we pulled off her Dexcom and noticed it was really bumpy/scaly underneath. I  thought she might have a bit of dermatitis from the tape, so I scrubbed it extra in the shower and forgot about it…..until the next site change. Her other arm under the tape looked like a chemical burn. It was weeping, raw, and angry. We have always covered the Dexcom tape with a layer of Opsite Flexifix and the wound was only under the area of the Dexcom tape but not under the Opsite which extends way beyond the perimeter. (We live in FL, our daughter is very active, and she’s a sweat-er so we've done Opsite each time around the borders). We went back to the arm that originally had the bumps (which had turned a bit pink after scrubbing) but a week later we pulled it off and found another weeping, chemical burn-looking wound that was even worse than the first one. I try to take most things in stride but all I could think about was my daughter as a teenager and young woman having scars on her body from years of adhesive allergies. It made me determined to find a solution.   (BTW - in case you are curious, it took about 3 weeks for the burn-like wounds to heal and the skin is still a bit rough in the area. The worst arm looks like it has a white coloration instead of pink/red. If you've ever worked with burn patients or have been burned yourself, you know that burns start red/pink and fade to white as they heal. It took a couple of months for the white to go away.)

About 1 week after "burn" wound from Dexcom adhesive

• So we tried her stomach next along with IV Prep underneath but she is very lean in the area and the sensor failed within 30 minutes. We googled Dexcom rash and Holy Toledo(!), the images looked identical.
• Next we tried her leg with the Dexcom tape placed on top of two layers of Opsite with a hole cut in it, along with the Dexcom tape trimmed down, then covered with another two layers of Opsite (with a hole for the transmitter). We also stopped cleansing with an alcohol wipe and started soap and water to reduce dryness. When it came off a week later, it looked better. Slightly purple underneath the square of the Dexcom tape (the new shape we had trimmed it to). However, when I attempted to clean it with a washcloth, the skin sloughed off to reveal pink underneath which meant she was still reacting to it.
• Next up was a double layer of Opsite underneath with no hole cut out, I punched through the tape directly with the Dexcom sensor so that the adhesive has even less opportunity to come into contact with her skin. Again I trimmed the Dexcom tape and sandwiched it underneath another two layers of Opsite. It wasn’t a complete success because the site turned pink underneath the next day. We decided to stop it on day 7 from now on.

    Somewhere in the deep crevices of internet advice I stumbled upon one or two recommending a blast from an asthma inhaler before applying the adhesive. The theory is that the corticosteroid of an asthma inhaler inhibits the allergic reaction of the tape. Creams beforehand would not allow the tape to stick at all, so you have to think outside the box. Hence, an aerosol format. Makes sense to me! So I brought it up while getting her flu shot from her pediatrician and he sent me home with a sample. Yippee! I love not fighting with Dr.’s about weird remedies like that. I also had heard rave reviews about the Johnson & Johnson tough pads working as a barrier underneath.

So after months of doing the above regiment,  we added a barrier wipe.  We also rotate between both arms, as well as 2 areas on both legs. Belly is still out of the question due to her being too lean and the amount of ???.

We currently have the following system and takes an additional 5-10 minutes:
- Clean w/soap & water
- Spray asthma inhaler Qvar 40 (or Flonase, a nasal allergy spray recommended by her Endo)
- Doughnut swipe with IV Prep (Minus "doughnut hole" where sensor wire punctures through skin)
- J&J Tough Pad
- Dexcom (with adhesive trimmed to fit onto Tough Pad without getting near edges)
- Wipe edges of both Dexcom G4 tape and Tough pad down with more IV Prep (to aid in sticking)
- Strips of Opsite flexifix tape down the edges of Dexcom/tough pad.
- One more strip that I place on the very edge of Dexcom transmitter (fat end only). I overlap a bit on the transmitter, the plastic casing, and the rest is on the adhesive. I do this along the back end then fold the opsite towards the body of the Dexcom (like a fat "U" shape) so that there is no gap between opsite and the transmitter.
-(Extra summertime fun requires vetwrap to help prevent tape from peeling. If you need help keeping the vetwrap on, make sure you tighten enough that you can fit a finger underneath the stretch but no more to where you are cutting off circulation or causing a compression low. Then secure the ends with a butterfly bandage.)

To remove the system on day 7, we use Unisolve to make sure all the adhesive is wiped off, then we wash the Unisolve off.  Apply a good moisturizer.

Updated 7/2015:
The moral of this update is to not give up on the CGM. Because so far so good! We tend to rotate between 4-6 separate areas so that we do not reuse a site more than every 4-6 weeks or so. Compared to the previous chemical burn reaction though, we'll take a bit of pink bumps for those few times it gets a bit more irritated (and usually only notice a reaction to the Opsite Flexifix IF we have to re-do the tape at any point during the 7 days. If we don't add the IV prep/Qvar step underneath the Opsite, it seems like she turns red underneath the Opsite for a day with itching.) But overall, we have been using this system for about a year and a half now and found that it works as the only solution that will allow us to continue using the CGM. We rarely, rarely have failed sensors even with the IV prep and Tough Pad underneath. (I mean like maybe 1 per 6 months, if that?). And even better, Flonase is now available OTC so if you are unable to get the Qvar 40 from your doctor, just try the Flonase. It takes a lot longer to dry since it is liquid, but still worth it!

Update 7/17: We have decided to replace the Opsite Flexifix with the new Stayput Medical patches. We just weren't happy with the slight irritation left over from the Opsite and always had to ensure the edges weren't peeling up. We tested the Stayput patches for both our Omnipod and Dexcom sites and she hasn't reacted at ALL, which is fantastic. Also it has helped with the water issues we were having, we'd constantly worry about her in the pool or bathtub and if the Opsite would hold. The Stayput really do stay put, so in sweaty Florida weather, it has been a relief to not worry about an early site change from adhesive issues. They seem to be a bit bigger than some competing patches, which the smaller sizes and shapes of competitors like Grif Grips didn't seem to cover much skin outside the device adhesive and thus deterred us from bothering with them. So yay for something that works and isn't an allergen! 

Catching Lows, Chasing Highs

     They say you often know your kid is getting sick possibly even days before real symptoms start because of how their blood sugar reacts. M was sick, including throwing up in the middle of the night & massive blow-out diapers. This was the first non-"cold" sickness she’s had since developing diabetes and it threw us for a loop. She started off by being high a couple nights in a row, which is hard when you are a D parent because you don’t want to give them too much insulin and have them drop to a low in the middle of the night, but yet you also don’t want them to stay high either. We always err on the side of caution and give half-corrections but those couple of nights the insulin just wouldn’t cut down the highs. (She was hovering between 250-300).

 

     In the morning (after discovering, then cleaning up the vomit), I checked her ketones and moderate ones (1.6) showed on our nifty Precision Xtra ketone meter. (Great for non-potty trained toddlers!).  Right after I called her Dr.’s office, she had a blow-out diaper. Per the doctor, checked ketones an hour later and it was down to 0.1. “That must have really cleared her system”, I thought. I called her Dr.’s office for an update and again, right after I hung up, another blow-out diaper. Greeaaatt. 3 pairs of jeans later, she was finally good on her blood sugar. Until we noticed that now she was having lowered blood sugars. I mean like sugars that were normal for a normal person(!) but head scratching for our daughter, who is still getting her treatment doses dialed in.  Then 4 hours after a meal, she would suddenly start climbing on the Dexcom. This went on for a couple of days until she started a pattern of going low instead of just staying in the normal non-diabetic range after a meal. Nothing too dramatic but still a 67 during naptime is never ideal, especially with a newborn in the house and limited time to get things done. Naptime is my only possible time to potentially be by myself, have a bit of quiet, read a book, be able to eat without stuffing it down my throat, or even, dare I say it, catch a nap myself. (I say potentially because with a newborn this doesn’t always work out). So I treat the low, which means the 15/15/15 rule. (15 grams of fast acting carbs, followed by a 15 minute wait, followed by 15 grams of snack if blood is above 80 by then). Well by the second blood check and giving a snack, no toddler is going to lay back down afterwards. This went on for almost two whole weeks, a full week past any physical "sick" symptoms.

 

     I talked to the diabetes management team at our Dr.’s office, who stated that there isn’t much research regarding lows during sickness, but that they have heard from parents of them sometimes occurring. For as much as we’ve learned about diabetes since the commercialization of insulin in 1922, we have so much that we still don’t know!

Halloween is Just the Beginning

Halloween is Just the Beginning

This time of the year is really getting to me. It is the start of the holidays in which food is a part of everything.  Halloween is tonight and I absolutely do not want my kid to feel left out by missing the fun of dressing up and going around our neighborhood. But man, it really stinks that almost every house hands out candy! I always thought I’d have to sneak my kids’ candy piece by piece, not have to take all of it away and be the bad guy every year. Later we plan on having her trade her candy in for toys or money, but for now we are the guys stealing candy from a baby since she doesn’t know what trading is. Next up is Thanksgiving (land of pies, casseroles, and bread), followed by Christmas (hello baked goods!). I still think a bit selfishly at times. Does this mean the end of our yearly cookie baking fest for my friends and me? The end of receiving cake balls & homemade Reese cups from our neighbor? No more yeast rolls, sweet potato casserole, corn casserole, or my mom’s chocolate cream pie? (Jeez, no wonder I’ve gained weight since high school!)  I can still sneak things behind her back this year, but what about in the years to come? Although we don’t have the insanity of the physical needles and symptoms, we still do have to make dietary cuts, figure out the carbs in every serving of every snack, meal & drink, deal with finances, give the blood checks, injections, log everything, go to the doctor appointments, etc.  I wonder if other D parents feel like they were also diagnosed with diabetes when their kid was.

 

Update: Halloween turned out to be quite okay. My husband did the candy shopping and came home with three small bags of candy for a huge kid-populated neighborhood, so we had to stop back home after a bit to drop off candy to be re-handed out. (My poor mom probably will not volunteer for candy hand-outs next year). We ended up with about 30 pieces at the end of which we gave one mini-Twix to M in the middle of walking so that she burned it off, along with a bolus to cover the carbs. Right after Halloween is when she got sick for about 2 weeks with a bunch of lows, so we saved the things like dum-dums and Smarties for lows or special treats if she was on the downward trend. We are definitely feeling better about the upcoming holidays this year. Oh the rollercoaster of emotions D brings!

A Day in the Life....

A Day in the Life of a Diabetic Toddler’s Handler

     In the last post, I mentioned that M was being assessed by a developmental assessor for delays. My main concern was speech but it turns out that she is more concerned about adaptive delays. (She has about a 15% delay in speech/language but 33%+ delay in adaptive, which is things like using a fork & spoon consistently, taking off Velcro shoes, etc.)  When we were going through the paperwork, she was required to ask about M’s daily routine, about feedings, and even if meal times are stressful. I had to laugh at that one. After I went through it all with her, she was like “Wow that really is a lot to deal with.”  Hearing it out loud was overwhelming, even to me. I realized that people really just don’t understand what it’s like to have a child with this disability. So I thought I’d *try* to outline a daily routine & thought process of what we go through every day, and why it’s so stressful so often. (For those who have diabetes &/or care for someone with it, please keep in mind that she is still honeymooning so her pump settings are not yet precise so we still have lots of highs/lows. Also, she is also a toddler so her control doesn’t need to be as tight as a post-pubescent child. CGM values = Low is anything below 90; High is over 300).

·         Wake up & look at the continuous glucose monitor (CGM) to make sure blood glucose levels are okay.

·         Make sure M wakes up within certain time frame so that we can calibrate the CGM and get her fed.

·         Get M from bed, come downstairs, get “juice” bottle (crystal light/water) & check her blood. Calibrate CGM. Figure out what she is going to eat. Count /measure the carbs exactly. It has to be between 28 and 40 grams. Try to hold her off because she doesn’t understand why we are getting her food out but not letting her eat it. Take the blood number and the carb number and enter them into her pump to find out how much insulin she needs. Dose her with the suggested amount. (Or not, sometimes we have to make adjustments for various reasons). Write everything down. Wait 15 minutes (we set a timer on the stove). Feed her (and all that entails for a toddler including cleaning up the area and her at the end).  Make sure the dog doesn’t eat any of her food. Make sure that she eats all of the food.

·         If the dog gets a piece, that’s carbs she’s not getting that she has been dosed for.

·         If she doesn’t eat all of her food, that’s carbs she’s not getting that she has been dosed for.

·         If she doesn’t get all the carbs she’s been dosed for, we have to figure out a replacement for those carbs and somehow get her to eat them.

·         For the next three hours, we watch the CGM monitor to see if her blood sugar if on target, too high, or too low. Too low means another snack and round of blood checks/insulin dosing. Too high means another round of blood checks/insulin dosing.

·         Then we have to feed her lunch at a precise 3-3.5 hours after breakfast because she starts crashing towards low blood sugar VERY fast right at the 3 hour mark. Another round of what to eat, weighing/measuring out the exact carb grams, holding her off, checking her blood, figuring out her dose and giving it, write it down, wait 10-15 minutes, feed her.  Then we wait to make sure that she hasn’t crashed too low from the food not “kicking” in before the insulin. So we wait to see an upward trend on the CGM monitor before we put her to bed for her nap.

·         Then again for the duration of her nap, we watch the CGM monitor to see how her sugar is doing. I generally don’t do anything while she’s sleeping if it creeps high but if it’s going low, I have to wake her up early to manually check her blood and give a snack if needed. If she is high, I wait until she wakes up, then check her blood and give a dose of insulin. After she wakes up, she may want a snack before dinner, so it is another round of weighing out food, counting the carbs, dosing the insulin, waiting the time, then making sure she eats the food entirely.

·         Dinner time is basically between 6-7:30 and consists of the same thing as lunch. Just remember when I say count carbs exactly, I’m talking that you have to know every measure of ketchup, every spoonful of peas, the breading on the chicken, the glaze on the carrots. Lasagna would be having to know the precise amount of noodles she was getting, with the best estimate of the mixture of sauce in which you have calculated the carb grams in the tomatoes, sugar, onion, meat, cheeses, etc.  And you have to know this all at least 15 minutes in advance. I would love to be able to eat a completely hot meal but generally don’t get to because it usually has to be done before we can weigh it, estimate carbs, and get her insulin dosed. Then we have to wait out the 15 minutes because I’m not cruel and won’t eat in front of her while she has to wait.

§         Don’t forget that you are dealing with a toddler’s finicky eating habits here. So if you give her insulin for something, you better make sure there is a high probability that she is going to eat it. We used to wait until the end of the meal to give her the insulin, but that didn’t work out so well because the time delay between food and insulin activating in your body meant that she would have HUGE blood sugar spikes that were nearly impossible to fix.

·         After dinner, it’s another 3 hour analysis of the CGM monitor before the bedtime blood check. Calibrate the CGM. If she is high, we give a dose of insulin. (Which is the nightly game of how much because too much will cause her to go low in the middle of the night. Too little means she stays elevated all night and can cause ketones to develop.) If she isn’t high enough, then it is a carefully selected night snack. (A balance of carbs, protein & fat in just the right gram amount which is anywhere from 4g to 15g depending on exactly what her blood glucose is.)

·         We also assess her CGM before we go to bed to make sure that her trend is going the right way that will sustain her through the night. If we messed up and she goes low, we get alerted by the CGM monitor with a loud vibration (we keep it in a glass cup), along with a loud alert sound. Then we check her blood, give her a real juice. Wait 15 minutes, check blood again, and then give a snack if the blood value has risen above the “low”. If not, we repeat. If we messed up and she stays high all night, then it is guaranteed she will wet the bed and I will have to change all the sheets, blankies, pump pouch and Pj’s, as well as give her a bath before I can start the morning routine. Because guess what?! You can’t give a bath/shower within the first 90 minutes after giving insulin. So if she needs a bath, it has to be before a dose or after the 90 minutes has elapsed. Why? Because it causes the insulin to be super absorbed and can drop her blood glucose levels low accidentally.

     So that’s basically our life, except on the days we have to reinstall her pump cannula or her CGM sensor. It’s every 3 days for the pump and every 7 for the CGM if we are lucky and nothing malfunctions. The pump cannula is slighter smaller than an IV that we have to shoot with a needle into a fatty area somewhere on her body (usually upper butt but can be lower stomach, backs of the arms, or upper thighs). The CGM sensor is about the thickness of a needle you would receive for a vaccine.  Either way, not easy to install on a 2 year old who doesn’t understand why you are sticking her with anything, let alone these large needles. She is pretty great with her blood sugar checks but it takes both of us to do the pump/CGM. My husband to hold her down while she screams and kicks and myself to prep the sites, insert the devices, etc. = FUN!

 

Developmental Delays in Type 1 Toddlers?

Correlation Between Developmental Delays and Type 1 Diabetes in Toddlers?

     Although I can find no research either way, and our Endocrinologist says not, I would like to state that I unequivocally think that diabetes caused a speech delay in my daughter. She was diagnosed at 22 months, but started sliding downhill in the 20^th month. She was always a little behind on the clarity of speech and number of words but was very active. She mastered the motor skills at early intervals. But at 20 months, she should have been making rapid gains in language skills. And she lagged. And lagged. Then I notice she started not wanting to come down the steps from our second floor to the first. I had to carry her every time. Not normal. This continued for months. I thought maybe she had developed a fear of the stairs due to some unknown reason.  

 

     After her diagnosis (on a Saturday), she was treated for DKA and her blood glucose levels were brought down. That following Monday, she gained more words in one day than she had managed to learn in the past three months. Suspicious, that’s what I call it. When you go from one word per month to three in one day? Immediately following receiving the insulin that your body needs? For a quick refresher, glucose is what the body breaks down for energy. Energy allows you to perform both physically AND mentally. IMO, if you have high energy needs physically, there is going to be less available for mental. She is a high energy kid. So the insulin wasn’t there to break down the glucose, meaning less glucose was available to support her activities. The body goes on survival mode and will keep supplying the glucose to the physical energy needs, leaving the learning (ie: mental) needs lacking. She simply didn’t have enough energy to supply her little brain the tools it needed to grow and thrive. Thus, she wasn’t learning new words. Then even her activity levels started dropping. Then the downward slope into real diabetes symptoms and finally DKA. Therefore, she got the insulin in the hospital, which broke down the glucose needed for her brain to learn new things, and poof, within no time at all she was learning new stuff.

 

     I am not a medical doctor or researcher, but I have enough analytical experience to recognize patterns and put two and two together. I also have an undergrad degree in clinical psychology, which includes lots of statistical/research courses. It is a tough area to have science backing me up on, because of the age of onset being so young that there are not a lot of kids to study but I would bet (HEAR ME OUT RESEARCHERS), that if they were to aim a focused study at developmental learning in this age range it would show a correlation between the two (type 1 diabetes onset and delay in speech/learning). I currently have her being assessed by a Developmental Assessor for a state program (through IDEA) and she agreed that there was a high likelihood of the two being related. If your brain is foggy from a high or low, how much harder would it be to take in new things and retain them?


A FEW UPDATES (JULY 2014):
1. Researchers have now shown a link between DKA and brain changes in children. They followed them for 6 months and found that DKA correlates to instances of brain change in children. Diabetes Care June 2014 vol. 37 no. 6 1554-1562. 
Again, I say that it is possible that delays are occurring before DKA.

2. After completing 6 months of home-based speech therapy, DD was evaluated by our local school district for an ESSS program designed for delayed 3 year olds where they are integrated with "normal" 4-5 year olds in the VPK program. She showed significant delay in expressive language and some delays in cognitive behaviors. They recommended classroom therapy for up to VPK's full-time schedule (pending parent concerns), as well as 90 minutes of speech and language therapy per week. We were terrified at this prospect, but at her IEP meeting, it was determined that she would have a 1:1 nurse assigned to her. Since registering for school, we also set-up Nightscout, where we are able to remotely view her Dexcom! (More on this in another post.)

3. As of 3 years, 3 months, she is doing better but still far behind her peers (as my 4 year old cousin stated, "Why doesn't she know how to talk yet?"). She mainly has a go-to cache of words and spontaneous sentences are still rare, so although she is very vocal, it's a lot of the same words or pre-learned sentences. If someone asks her any question, she always answers with "I'm Kayla". So it is still a work in progress....

Our Insurance Fight

Our Insurance "Fight"

     Dun-Dun-Dun, the dreaded insurance coverage guideline. The glaring words shouting out from my computer screen stating that insulin pumps are only possible after a six month waiting period after the patient completes MDI (Multiple Daily Injections) and can submit logs. I see this and think “challenge accepted”. So at 1.5 months after diagnosis, I tell my doctor that I am asking for them to work with me on getting approval for a pump for our daughter. They basically tell me that my insurance has a waiting period of 6 months, and that generally the first request is denied, especially within the first six months but they would be happy to get the process started if that was "my wish" (I can tell they think I've got no shot but if I want to waste my time then so be it).  We review the pump options and settle on the Animas Ping due to the micro-dosing abilities, waterproof technology, and the remote control. I’ve already met the deductible this year because of her hospital stay, so I do not want to wait until the end of the year to apply and then be denied. She needed micro-dosing abilities because of her honeymoon period and was either going too high or too low because you couldn’t get more precise with a syringe. Normally the excuse to delay pumping is because of the honeymoon period but it was the opposite with my child.

     So here is what I did. I contacted the Animas rep and got the application. I submitted said application along with a lovely little letter I call the pre-appeal. Instead of having to appeal a denial a month later, I figured I’d put my appeal points into a lengthy letter that would have done a lawyer proud. At the top of the letter, I placed a smiling photo of my daughter which just dared them to deny her. I then reviewed 8 points of why she needed a pump before the 6 month waiting period ended. Luckily at my last job before becoming a stay-at-home mom, I did medical appeal letters on a regular basis. So I utilized the format and lingo that were successful with those claim appeals. Then I submitted everything to the rep and waited (kind-of).

     A week and a half later, (after one phone call to the call center to inquire as to how much longer it might be because in the meantime my daughter almost died and that this would be a constant threat until she was on the pump), I received a call directly from the shipping division of Animas telling me that my pump would be sent out that day and at my door within 2 days. I started crying and jumping up and down. You would have thought they had told me that there was a brand new Mercedes I had won in a drawing being delivered. Nope, just our beautiful, pink and shiny new insulin pump, no larger than a cell phone.

     Then….I called my daughter’s Endocrinologist office to ask about pump training. They tell me that we can come in next month (say whattt???!). Apparently they never thought that we would be approved and hadn’t started us on the MDI schedule that mimics the pump yet. I sat there and looked at the formulas. I look at the syringe. I look at the formulas. Then I ask her Dr.’s diabetes educator one important question. How is the MDI schedule you want her on any different than the MDI formulas? Because the whole point of the pump is the dosing is more exact. We were stuck in place on the syringes. In a 3/10cc syringe, .5 is the smallest dose, followed by 1. She was either .5 or 1 depending on the time of day. If we go less, she goes too high. If we go more, she goes too low. So basically I’d be doing the exact same injections for a month while my brand new, hard-fought pump sits in its box in our house. No way! Let’s just say they saw my logic and got her in within a couple days. They told me that my daughter was the fastest to ever receive pump training. So by month two, 9 weeks after diagnosis, my daughter was full-time pumping with the Animas at zero cost to us.

The Scariest Moments

The Scariest Moments

(IE: I Love Our Dexcom)

      First, let me say that the Continuous Glucose Monitor (CGM) is one of the best inventions ever. The Dexcom G4 is probably the best of the CGM’s currently available in the US. When your kid is a type 1 diabetic and cannot tell you when they feel high or low, aside from testing them a hundred times a day, a CGM is the only way to go. Luckily our insurance covered it no problem, so we had our CGM training in under a month after diagnosis. Since then, it has literally saved her life more than once.

      But the first and scariest time was on Memorial Day, 2013. She normally naps about 2 hours, starting immediately after lunch. So I fed her the normal carb amount (then 30-35g), gave the normal bolus, and put her down. She was in the 120’s before lunch and had a medium range glycemic food. About 45 minutes into her nap, her Dexcom alerted that she was going low. (We have it programmed for anything below 90). I hated to wake her up to check her blood since she generally won’t fall back asleep for naps, but the trend was going down. Better safe than sorry! So I trudged up there, checked her blood, and had my first mini-stroke. It was a 44! I ran back downstairs for the insta-glucose and more test strips. As I was having her drink the glucose pack, I double checked it and it was a 46! She was super hard to wake up and was sweaty to the point of soaking the sheets. She starting screaming when I woke her up, alerting my husband to the fact there was a problem (he was sunbathing in the yard). After a mere 45 minutes into a 2 hour stretch of napping, she had dropped almost a hundred points.

     I shudder to think if we hadn’t had the Dexcom and had waited for her to wake up on her own. I will let her sleep 3 hours before I wake her up if she’s not yet up so she would have been up there going lower and lower for another two hours. I would have had a dead-in-the-bed kid. I had to go and lay down for a couple hours after that because I was so sick at the thought. Let’s just say we had already applied to our insurance company for the pump (to better regulate her dosing since the syringes couldn’t get the micro-dosing she needed), and I had them on the phone the next day putting a emergency status on the “review”.  More on that insurance fight next post.

Dexcom CGM Monitor on her stomach

Hell Week

Hell Week

      The first week at home with our newly diagnosed 23 month old daughter was what I like to refer to as “hell week”. I guarantee it would have tried the patience and endurance of any Marine. I cried, I begged, I wondered what the heck my life was turning out to be. And I wasn’t even the one diagnosed with type 1 diabetes!  But seriously, I would have had to check into a mental asylum if it had been much longer than that infuriatingly long week. Why do you ask?  My toddler’s tantrums should have been the basis for the Exorcist. She could have taught fellow two year olds on how to properly throw a temper tantrum worthy of an Oscar nomination. You could have filmed it for a reality TV show on dysfunctional children with behavioral issues.

     I want to preface the following by saying I totally would have done the same thing if I was two years old and had no understanding of what was happening to me. I probably would’ve despised my parents for seemingly torturing me 10+ times a day with needles galore and on top of that, waking me up throughout the night leaving me feeling like a zombie. However, sympathizing does not alleviate the totality of the stress of having to watch your two year old throw herself on the ground and bang her head backwards. Hitting, biting, kicking, & deafening screams. I actually worried that my neighbors would think that we were abusing our child from the sounds that emanated from our house. I worried about concussions from the throwing her head backwards on the tile. She developed bruises from the insulin shots from kicking in the middle of an injection. She ran from us when we tried to get blood for her glucose checks. We woke up every 2-3 hours to check her blood at night to make sure she wasn’t going low. A lack of sleep abounded in our family. Did I mention I was 4.5 months pregnant during this?

     I felt like no one could understand. She was eating more than a teenage boy to recover from the weight loss associated from the DKA episode (at her diagnosis). To everyone else, she was handling it like a champ. But…..She had a special resentment just for mommy during our long hours alone together while daddy was at work. I had to figure out pretzel-like maneuvers to get her into a manageable position to give her shots & check her blood. I had calculators all over the place to double check my carb counts before I could feed her. And did I mention that she wanted to be fed NOW. As in blood curdling screaming that would last from the instant she felt a hunger cue through the blood check, preparation, cooling, counting, plating, etc.  Did I mention she was hungry ALL THE TIME. And on a feeding schedule. With limited carb amounts. Let’s just say she ate a lot of cheese and sugar-free jello that week.

     I was terrified of making a mistake. We had the smallest syringe available and had to fill it to one of the two smallest lines within the syringe. There was: two types of insulin to possibly mix up; lancets to deal with; sharps containers to pick up; organization of the buckets of diabetes care items and education; writing down EVERYTHING.

     Everything I had taken for granted was becoming my most treasured memories. Easter approached right after diagnosis and all the other kids got Easter candies. Except my child, who couldn’t have them. It was like a giant pity-party at our house. Mourning for the childhood she should have had, filled with cotton candy, Halloween treats, birthday cake, candied apples, Sunday morning pancakes, and baking cookies with mom.

 

     Just over a week and the appetite started to settle down. With that, the temper tantrums subsided to the normal two year old levels (while always fun, in no way resembled the terror-striking ones of the past week). My husband and I figure out a sleep schedule. I start to get a handle on my emotions. We crash course learn about insulin dosing, carb counting, symptoms of highs & lows, no-no foods, the glycemic index, food measuring, insurance coverage, outing planning, and where to sell an organ to pay for everything.


     All kidding aside, you literally go through the 7 stages of grief: Shock & Denial – yep; Pain & Guilt – double check; Anger & Bargaining – oh ya; Depression, Reflection & Loneliness – yep; Upward Turn – this is the “getting a handle on my emotions” portion; Reconstruction & Working Through – this one took a couple of months; Acceptance & Hope – 6 months later I am here.)

Organization is Key

 

One of the first things to do when getting started with a new D diagnosis is get organized. I started off with the travel pack they gave us at the Endocrinologist office, but our supplies rapidly started outgrowing it, not to mention how inconvenient some of those pockets are at 2am. So I headed out and picked up a few things and ordered online a TON of stuff. 

The first and BEST thing I could've initially purchased is the clear acrylic organizer by Caboodles. There are a bunch of different ones by that company, as well as I'm sure competitors, but this one just fits our D stuff so well. This one was about $16 at Target in the Beauty/Health section.


In that organizer you will find: 

• Pen needles & 3/10 syringes.
• Glucose meter, strips, and Calorie King nutritional book.
• Alcohol swabs, box of FastClix lancets, box of Precision Xtra blood ketone strips and meter.
• In the individual cubbies are: Lantus (in a green koozie), Humalog Luxura pen; FastClix Lancing device; Sharpie; Humalog bottle koozie; Ketostix; glucose meter control solution. Not exactly lipsticks but what can you do?

The other must haves were: (Shown in Top Picture)

• Sharps container (free pick up/drop off in my county at the local health department/fire stations)
• A by-HOUR daily calendar (b/c the log books they give you just don't leave a lot of room for writing; found on clearance at Target for $5)
• Food scale with tare and g/oz/lb/kg options (EatSmart Precision Pro Digital; $25, Amazon.com)
• The aforementioned insulin koozies which will save you easy money b/c dropping 1 vial of insulin is EXPENSIVE (Securitee Blanket Vial Protectors, $7/each at Amazon.com)
• The aforementioned CalorieKing Calorie, Fat & Carbohydrate Counter is a MUST, MUST for proper D care. I received one free from the Endo but purchased others for babysitter/grandma, grandma #2, main car, etc. ($5, Amazon.com)

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Eventually our daily needs stash was pared down, so I went on to the next find: IKEA 

Ikealand was kind enough to make these kitchen accessories that are sort of perfect for D supplies. The little steel organizer bar allows you to pick the perfect containers to hang, which I selected two flatware caddies and a flat bottom wire basket. Caddy #1 gets alcohol pads; Caddy #2 (usually) holds a fast acting gel, pens/sharpies, Crystal Light liquid and anti-itch cream if we need it after a site change. The wire basket is a catch-all with lancets, blood meter supplies, calculator, insulin, ketone strips, pump clips, etc. It freed up the counter to throw the food scale and logbook underneath it. Nice, neat, organized, and ACCESSIBLE. 

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Other Important Items: 

• 3 tier plastic bin for the extra items like swabs, lancets, blood glucose strips, instruction manuals, extra meters/lancing devices, needles, etc. (I did the snap-by-layer kind but the drawer kind could also work for you; I liked mine b/c the top layer had multiple compartments to organize the smaller stuff, and I didn't have to worry about items getting stuck/jammed in the drawers.). Once we started accumulating things, this went into a kitchen cabinet along with the gobs of pump and CGM supplies. 
• Small Cooler (Ours is the Icy Diamond Small Insulated Tote; $21 at Amazon.com)
• Binder for all the D-paperwork. I used clear plastic sleeves to easily flip through them. It's got everything from the Doctor's info to the free foods (under 5g) that she is allowed, to insurance letters and RX info. I decorated mine with some snazzy scrapbooking paper and glitter letters I had already on hand.

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Vacation worries were solved when I stumbled across the Joy Mangano XL Beauty case. This thing is like the Cadillac of organizers. I did a test run with things still in boxes and ended up with room to spare. The large section had 6+ Dexcom (dexcom.com) sensors alone (hard to see) and I could've added plenty on top. When we took a cross-country trip to L.A., I was able to use this perfectly at the airport because the sections velcro on/off. Non-scannable items in one packet to hand to security, one packet had food/drink for plane ride, and the other 2 were for scannable medical supplies. It folds into around 12"x6"x6" with a handle and since it would be all medical supplies within it, does not count towards your carry-on luggage tally. 

Joy Mangano XL Beauty case

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Preschool?

Found this adorable toddler backpack by Skip Hop, which the teacher would keep. A Vera Bradley ID case on a carbinder is perfect for Dexcom receivers. The middle section has a pencil holder with her Glucagon, jellybeans, fast acting gel, glucose tablets, juice, etc. The front pocket holds her meter kit, pump remote, ketone meter/strips, and her data phone. Side pocket holds a water bottle (even the tall reusable Contigo's). 

So there you have it, a bit of insight into how we started out organizing, and what we do now that we are years into it. Disclaimer: Aside from being a Dexcom Warrior, none of the aforementioned products are affiliated with me/this blog in any way.

Something is WRONG I Tell You!

Mikayla 1 week after diagnosis                                                  

 

A Mother's Intuition.....

    One Monday, my twenty-three month old daughter Mikayla came up to me asking for her baba (sippy cup). Chocolate milk in, drained. Immediately asks for a refill. Give her a little more with a little less chocolate. An hour later, she's bringing the cup back to me for another. Repeat this pattern every hour. Suddenly the cute "baba-mmm" turns into an annoyance. I am a stay-at-home mom, so when my husband gets home, I complain about how much she drank that day and how inconvenient it is to constantly be hounded for a drink. That night she overflows her diaper during her sleep, not common but not unheard of. The last couple of months she has had a diaper rash that comes and goes, but has lately turned into a yeast rash.

    The same pattern emerges the next day. Again, a sopping diaper come Wednesday morning. By Wednesday, she is still drinking all the time and I start to get a bit worried. She is very snuggly/tired. Hence the wonderful world of the web doctor. Biggest topic for bed wetting + yeast rash + drinking a lot + tiredness? Type 1 diabetes, which often presents in toddlers as DKA first. Diabetic ketoacidosis is where the body cannot use the glucose since the insulin is missing, and glucose is what gives your body energy. Your body starts breaking down itself to provide that energy, while glucose levels continually rise since they aren't being burned off. It can lead to coma and death if left untreated. It's rare for a toddler to have Type 1 says the internet. And the beginning of am-I or am-I-not a hypochondriac starts. Another soggy diaper that night.
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    Thursday comes and I call the nurse at the doctors office. The nurse states that the only real way to know anything is to come in, blah blah blah, the usual drill. I call my husband and ultimately decide to go in. Unfortunately, by the time I call back they are booked through the end of the day, so I make an appointment for first thing the next morning.

I want to preface the following with several pertinent facts:

• I am pregnant and have had extremely bad morning sickness, whereas the only thing I had wanted throughout the first trimester for breakfast was chocolate milk. Hence, I started adding some to her milk as well. Soon she is pulling on the fridge doors and pulling out the chocolate Hershey bottle to give to us.
• If I say bottle in this blog, it means sippy cup.
• The night before the doctor appointment, I find out that my husband has been giving her two bottles of chocolate milk before bedtime instead of the normal one regular milk bottle. No wonder she has been soaking the bed!
• Type 1 diabetes history in our family, of which one of my cousins actually died of at the age of 17. So I was already sensitive to the issue.

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    Thursday night, my husband comes home and we start an honest discussion. I have a yeast infection, I give my daughter a shower simultaneously, so perhaps I have given her my yeast infection?  This is also the point I find out about the multiple nighttime bottles my husband had been slipping her. She helps us out by throwing a tantrum that night while being denied the chocolate bottle. We also deny any juice. Suddenly she doesn't seem as thirsty. Coincidence? We think we have a diagnosis. Toddler tantrum/chocolate milk addict.

    Friday morning, we make our case before the doctor, including our original suspicion of diabetes, as well as our probable diagnosis that our daughter was a bit spoiled on the chocolate milk. We are sheepishly laughing that we came to the doctor for something so minor but chalk it up as a first-time-parenting lesson. He says it's probably nothing, but we can do a urine catheter on her to check if we'd like....but....it was up to us. I cringe at the thought of a catheter for my baby. Nope, it can't possibly be something so severe as diabetes when faced with toddlerhood, so we decline and just ask for the yeast rash to be treated. He recommends Lotrimin athletes foot powder of all things, as the Monistat cream hadn't been working.

    Saturday & Sunday, Lotrimin is working like a charm! Woohoo, we eliminated the yeast, and continue denying her any juice or chocolate milk. Normal weekend, if a touch irritable which we attribute to being denied the "good stuff". The child was never a fan of plain water so that was understandable.
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    Then comes Monday (week two).......Cranky, check! Soggy overnight diapers, check! Somewhat decreased appetite, check! Increased thirst again, even with plain milk and water, check! Mild fever, check! Soaking the bed during naptime, check! Fatigue, check!

    Tuesday (week two) is all of Monday with a further decreased appetite and a greater fatigue.

    Wednesday is picking at food plus all of the above, but it seems like the fever is gone after giving acetaminophen. I am doing laundry like a maniac for her PJ's, sheets, mattress cover, regular day-clothes, my clothes from picking her up while she's soaking wet. She doesn't really want to play with anything, just sit and watch TV (which I allow since it's obvious she isn't feeling well). Teething? Flu? Or the start of DKA.....?
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    Thursday I am excited because both my military brother is in town, as well as my aunt & uncle. My daughter sleeps 13 hours until I wake her up to get ready to pick up my brother from the airport. My mother's sister has never met our daughter before, so we are really happy to show her off....except that within 20 minutes of her meeting my aunt, she pukes all over her. Showers for everyone. I mention to my aunt (who happens to be on her local branch board of directors for the Juvenile Diabetes Research Foundation due to the family history/her nephew) that we had taken her in the week before due to suspicion of diabetes.  Mikayla is basically a limp noodle by the nighttime and eats two saltines as her daily food tally. I'm bummed that my aunt didn't get to meet the "real" Mikayla. My kid is starting to scare me. She is normally super bubbly, non-stop. Her just laying there, without even interest in her favorite TV shows, is super concerning. My husband takes her home early and she proceeds to puke a couple more times that night. I really research DKA and even go check on her at 12:30am to see if she has acetone/fruity breath and that she is still breathing. (My cousin died while sleeping). No fruity breath, just smells like good ole vomit.
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    Friday morning after a sleepless night of being freaked-out, as well as one week after initial doctor visit, I am waking her up early to go to the rapid clinic (no appointment needed/walk-in hours) offered by her Pediatrician's office. I meet with their nurse practitioner and a diagnosis of ear infection is determined to be the probable cause. But you know that gut feeling, where you just know there is something more than just an ear infection? That thing keeping you up checking the baby monitor? I sense there just has to be more to it.

1. I point out the fact that we had just been in the past week due to possible diabetes but hadn't run any tests (yes, kicking myself still).
2. I tell her we have a family history of Type 1 and that I might be paranoid, but I am worried about this being DKA. She (thankfully) is agreeable and tells me that we can test her to relieve my mind. She orders an in-house urine catheterization, as well as at-the-lab stat blood-work. Urine comes back within normal limits but ketones are elevated. It could be from dehydration since she hasn't been eating.
3. I breathe a sigh of relief and head to the lab.
4. The rest of the day Mikayla is still limp. I call the doctors office, which still hasn't received the lab report. I call the lab, they close early at the blood draw office and I have no idea how to get in touch with the processing & results department.
5. I figure that we will find out the next day, Saturday, because the doctor's office (thankfully again), offers rapid clinic for several hours in the AM.

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    Saturday morning, our nightmare begins. It started fine, she is even a bit better, giving my husband a high-five, giggling at Mickey Mouse Clubhouse, and eating a bit. THEN I get a call from the doctor's office nurse practitioner, telling me that the lab report is back. DUN-DUN-DUN, she holds no breath before telling me that her blood glucose came back at 428. My heart sinks. She confirms it by telling me that this means diabetes, no doubt about it. She has called the pediatric endocrinologist to meet us at the local children's hospital Emergency Room and that we should probably pack an overnight bag. My first words to her, after OMG, OMG, OMG, were: "I can't believe I was right".  I didn't want to be right, but there I was with a confirmation of my worst fears. I wasn't a hypochondriac or a self-diagnose web addict!

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    I fought for my child, and my intuition paid off. She looked pitiful, but the DKA wasn't at a horrible level yet and we were able to reverse it completely at the hospital within about 30 hours to be discharged home. I went through a period of self-doubt, which lead to the diagnosis being made one week late and a DKA diagnosis being thrown in at that point. You have to trust in yourself to recognize that you know your child best and that you see your child everyday, of which the doctor only sees them a couple times per year for minutes at a time.

    Don't be afraid of testing like I was initially, the urine catheter wasn't that bad actually (although truthfully the blood draw was worse since she was so dehydrated by that second visit). I just had to repeat to myself that these tests will ultimately help my daughter. I was prepared to continue fighting until I got those tests but luckily the nurse practitioner is a diabetic herself and understood my concerns perhaps better than the average medical caregiver. Not every parent will be that lucky. If its the weekend, go to the urgent care center. Not so drastic as the hospital but with the ability to figure it out. Make them listen to you because it's way easier on everyone to figure this out before getting to the point of DKA.