Feeling Lost

My 7 year old daughter was diagnosed yesterday after we began noticing excessive thirst, constant urinating and lethargy. We brought her in to just get checked by her pediatrician. Sugars were over 600. We were immediately sent to an endocrinologist group at our children’s hospital and a whirlwind ensued of several more tests and a 3 hour crash course in caring for a juvenile diabetic. I’m so confused and can’t stop crying. None of my friends or family has experienced this so while everyone is supportive they can offer no real understanding. The medical staff assured us that things would get easier over time. I don’t even know what questions to ask, if we are using the best monitor etc…so far my daughter is terrified of constantly getting pricked which is so upsetting to me. We are using accucheck nano. Is this a good one for kids or are there better ones? Will she always need to do finger pricks? I’m trying not to get ahead of myself. I just don’t want to waste money if I need to switch. Until this Thursday we are just instructed to watch for lows and not pay attention to highs unless “hi” on the meter for 24 hours…which so far she’s been in the 3-400s this first day. We are also instructed to not really change her diet until we meet again. They warned us of a really slow progression. We were not admitted to the hospital. It seems like most kids are from reading these forums and others. I almost wish we were. My husband and I feel very insecure with being able to handle all this without help.

Id love to know what these next few months will look like adjusting and to get advice from been there, done that’s.

Thanks,
Erika

Hi Erika,

Welcome. It’s a great first step to join an online forum like this, where you can read through other people’s experiences and hopefully start to feel better about your daughter’s future. I have had T1 since I was 4, and I’m 27 now. I’m doing great and have had no complications or any major issues in living a normal life.

TypeOneNation is full of people who have had T1 for decades and also are complication-free. It’s an adjustment, and I’m so sad that you feel lost, but it will get better, I promise. And your daughter will be just fine.

I also use AccuChek Nano, and I’ve been using the AccuChek brand for probably at least 10 years now. I like it. The thing to remember is that you just need to monitor blood sugars, and any monitor will do that. I don’t think there is a “best” monitor. When I was first diagnosed, I know my mom decorated my monitor with stickers and got a cute case for it, so I think that may have helped me a little. My parents and brothers also checked their blood sugars along with me for the first few months, which made me feel better about doing it.

There’s a great book out there called “Think Like a Pancreas” that I recommend you read. It’s very helpful and should help you feel less overwhelmed.

The advice you were given is solid. Just keep track of those blood sugar numbers. It’s a constant learning process, but you will be just fine.

I’d also recommend that you look into some local chapters of the JDRF (maybe there will be some meetings or other events in a city near you), and also join Facebook T1Diabetes groups (if you’re on Facebook).

I’ll be keeping you and your family in my thoughts.

Hi Erika,

I was diagnosed with T1D when I was six. Your family will get through this. It will not be easy (I doubt I need to tell you that, but it’s true), but you won’t have to do it alone. We’re here to help and support you and your family. I’m so glad you found Type One Nation so soon.

Everything you’re describing is normal, in terms of how you feel and the questions you have. I hope that talking with others who get it will help reassure you and your family that while this will completely flip the “normal” in your life, we’re all in this together and find our new version of what “normal” looks and feels like.

If you’re up to it, there are many families who have shared their own stories of diagnosis and how they adjusted, here: http://youcandothisproject.com/category/kids/

I’ve been living with T1D for nearly 28 years now, and I just had my first (healthy!) daughter last year. Don’t let diabetes cloud your hope - life can still be great. :slight_smile:

Please reach out if I can help in any way.

Kim

Hi Erika,

I’m so sorry you’re going through this. My daughter was diagnosed at age 10, nearly four years ago. Type 1 diabetes is an absolute life changer, no doubt about it. I know you’re scared. I was completely freaked out when my daughter (Sarah) was diagnosed. On the way home I kept checking her, asking if she was okay. I remember being ready to just pull off to the side of the road at a moment’s notice to give glucagon – even though she was feeling completely fine. Looking back, I really was in a kind of “funk” for probably about a year after. I couldn’t do anything but think diabetes. My work and everything else suffered. But you know what? I found that she and I are both stronger than I gave us credit for. Diabetes is a pain, and we still check bg 10+ times every day, but Sarah is happy, healthy, an excellent student (now in high school), active in extra curricular activities. She’s probably healthier than most teens she knows because she’s aware of everything she puts into her body. She appreciates life, and has developed so much empathy for kids with differences or other health problems.

I know this is hard to hear, but it really does get easier with time. Four years later, diabetes is in the background of our lives. It’s always there, and we always have to manage it, but it doesn’t consume our thoughts.

My very best to you. Please feel free to connect with me via facebook or otherwise.

Michelle

Hi Erika,

I know (we know) you are scared and overwhelmed. You will be for awhile. I was dx’d out of the blue almost 20 years ago and I’m still learning. As Maria mentioned above, this is a great place to start. Also, there are many very active members of the T1 community on social media (Twitter etc) who are always willing to listen and help. I’d encourage you to join us online.

Keep track of those numbers. Testing your daughter’s BS on a constant basis will be at first incredibly overwhelming, but eventually it will become routine. Without testing it’s like you are driving to a destination with no directions or map. There are going to be ups and downs, some things will impact your daughter for reasons unknown and you may feel like you are doing everything right but things are still a bit off. This is all normal. T1 is a marathon, not a sprint. It’s a learning process that constantly changes. I’m not saying these things to scare you guys, just saying that everything you are feeling is perfectly normal. We’ve all been there.

This is just the beginning and your daughter needs you guys more than ever. The diabetes online community is, in my opinion, incredibly resourceful and tight knit. You have a question? Ask away. Are you unsure of something you are doing or are scared? We got you.

We are all in this together. We will be thinking of you and your family. Give her a hug and kiss and tell her everything is going to be ok. We’ll be right there with you.

Mike

Hi! I know how scary it is!! My daughter was dx on 5/2/13 she was only 9 months and spent 3 days in icu. 25 days later her 4 year old brother was diagnosed as type 1 diabetic. It’s scary and so overwhelming but you can do this! I remember crying when people told me it will get better thinking how could it?! But the were right! Some days are hard. Scream cry shout let it go it’s ok!! But then there are days that are good! Perfect numbers happy kid try to enjoy those days!! The Internet has been a huge help to me. Please don’t forget we are here for you!! Hugs to you and your daughter! !

My son Jonathan was diagnosed at the age of 2. We brought him in for constant urination, thirst and a strange rash. Took the Emergency Room two hours to sample a blood sugar which revealed a glucose of 950. The hospital was amazed he was even conscious. He was ambivaced to Children’s Hospital of Philadelphia where out entire world turned upside down. Our life style changed and on top of it we had this disease to worry about together with everything else a parent worries about.

Jonathan is now about to turn 9 year old in two weeks and I can tell you this…IT GETS EASIER. You did a great thing by joining a forum. Talking about it always helped me. I also joined the local chapter of the JDRF and they introduced me to the Bag of Hope program for newly diagnosed kids. Don’t be afraid to ask questions and most importantly understand it is ok to break down. This is difficult. It is something as a parent we wish we could make out child better and protect them because that is what we do as parents and we simply cannot with T1D. But you can fight. We can fight for a cure, we can fight for excellent health benefits, etc. Just know you are not alone and so many people will be there for you. Ironically you will make so many great friends from this. Understand that you will most likely have numerous hospital visits, high blood sugars, low blood sugars, you will have the moments of where your child just wants a piece of cake and their sugars are just too high. You learn from all of this.

To give you some light, Jonathan is a straight A student, loves to read and plays soccer and basketball. Jonathan has become his own advocate as he has gotten older and loves teaching people about his diabetes. Just know we are all here for your entire family :slight_smile:

Erika, I am a grandmother who was diagnosed as type 1 at age 12, waaaay back in the dark ages. I am fit and healthy and probably healthier than most of my peers because, like what Michelle (above) wrote, I am careful about what I eat, and I find that eating the same amount of food at each meals helps stabilize my glucose and insulin needs for good control. Yes, like all type 1 folks who are in good control, I test often and adjust often, but truly, in time you hopefully will cease to be consumed by the thought of your daughter being diabetic. It won’t be the first thing you or anyone else thinks of when they see her: you and others who know and love her will think of the things she is gifted at, her personality, etc. Those are who she IS. This is just something she will need to learn to do to remain healthy, like brushing teeth every morning. Even being diagnosed before glucometers were even available, I am complication-free after 44 years on insulin. She can have this kind of healthy life too. So we who are writing here encourage you. Once you as mom are able to get over your disappointment over this diagnosis, you can move on, and so can your daughter.

A tip for glucose testing: go for the SIDES of the fingertips. Pricking is not as painful on the sides of fingers as on the ball of the fingertip, and blood flow is just as good. Also, make sure you are using the smallest needle that is available… shots are often completely painless with tiny needles, depending on the location. Maybe you and your daughter can make a game of finding the “best” spots for shots. Some locations even on the same general area are very sensitive while others are not. Perhaps while she adjusts, you can find some way to distract her when it is time for a shot or finger prick: sometimes making a very tight fist can distract me if a nurse has a very hard time finding a vein when trying to do lab work (I have tiny veins, a lab technician’s nightmare). I have learned to do this or sometimes to use the other hand to rub a spot on my arm or leg vigorously to send messages to my brain that other sensations are happening, and doing this makes the needle prick less of an issue. The brain is easily confused about pain signals and any “sensation” you create to distract the brain’s attention will make the pricks actually less painful. Make sure you teach HER these things, for they really do help and she will need to know about any tips like this as she grows up and learns to manage this by herself.

One thing that happens, I believe, with any diagnosis of a chronic disease, is that we learn to really listen to our bodies. And in the case of the type 1 diabetic person, we learn to control a lot. We listen to our bodies daily, hourly, and react to what our bodies tell us. In many ways, we become much healthier than the typical American of today who eats prepackaged meals, who won’t make the effort to get exercise, who gains weight after middle years hit. I am still the same size I was in college, and don’t expect to ever have to battle obesity. Perhaps lucky genes, but I suspect the real reason is that my diet is made up of fairly simple foods rather than casseroles because simple foods are easier to figure out carbohydrate content for. And they are lower in calories. A half cup of frozen green peas, after cooking, has much fewer calories than a half cup of pretty much any casserole dish. We learn to love celery and baby carrots and tiny salad tomatoes, which are pretty much “free” snack foods. We learn to love a slice of cheese when hungry or a handful of nuts – both having neglible carbohydrates – which are much healthier than a handful of crackers or chips. You may find that if the whole family starts to eat simple foods, all will be healthier.

Yes, this is something that will change your lives, but in some ways, you can make lemonade out of the lemons if you focus on the good things you and your family will learn about nutrition and lifestyle while learning to adjust your daughter’s glucose levels. As others have written, we all KNOW from first-hand experience that this becomes easier in time and you will figure it out. Do get in touch with your local JDRF chapter and see if you can find other parents locally who can help guide you. We are out there, and JDRF’s Online Diabetes Support Team (ODST) is also available to help with specific issues, to answer questions from first-hand experience. So feel free to ask questions, and if there are specific more personal questions than are appropriate to bring up in TypeOneNation, do go to jdrf.org and click the button at the bottom of the page labelled: “Get Personal Support.” You will be matched up with just the right volunteer who will email you and answer your question. There is a lot to learn, and much is not written in the “textbooks” so I do recommend finding support this way. We are here for you and your daughter!!

Hi Erika,
I can’t comment from a parents’ perspective but I can certainly comment from a person with diabetes’ perspective. And once a child with diabetes! I just commemorated my 32nd anniversary since being diagnosed at age 5 [not to intentionally give my age away ;)] and I am still doing well :slight_smile: While the near future for you and your little girl may seem unknown right now, please know that you can do it. It’s ok to feel scared and upset and know that you may feel that from time to time. I just told this to another D mamma recently - one thing about people with diabetes and their loved ones is that we are warriors. And we are warriors because we are stronger than any fear. You will hopefully begin to feel that way once you get settled into your new routine. There are many, many people out there rooting for you and have your back :slight_smile:

Your new friend,
Stacey

Hi – I am going to give you the long look. Only because it will help you see down the road, not because your feelings are not valid now. THEY ARE!

So my daughter was diagnosed at 6, going on 17 years ago. In those years she has: ( in no particular order): gone to birthday parties and had cake, done that without me there, been part of a competitive swim team that meant lots of swimming all day long, been a state tennis champ, played field hockey and soccer poorly but looked cute in the outfits, gone to sleepovers, became an expert skier, dated boys, was student body president and on homecoming court, voted most school spirit, went on overnight school trips without me, went to college 500 miles away, interned in congress, fallen in love and had her heart broken, drank beer (yes – they can but not at 2! ha ha) … basically everything she would have done in life so far without diabetes.

yes it takes some extra time and work but we CAN do it. I’m so thankful I found JDRF about a year into her diagnosis. THe friends i made via jdrf have made all the difference for us. So did diabetes camp for her. And we became advocates (not right away. we really needed the first year to learn …)

The shock is jarring but like us, you and your child will rise to this and show diabetes who is boss.

Erika:

The first days are the hardest, and everything you are feeling is perfectly normal and to be expected. In the early months you will be in constant contact with your care team (endocrinologist, diabetes educators, social workers, etc.) since the learning curve is steep and I’m guessing that you, like most of us, didn’t go to medical school to study diabetes care. There is much to learn, but give yourself time and go easy. It’s a marathon, but eventually you will gain your footing and it will become more manageable.

I don’t know where you live, but there should be local support groups available to you, as well as camps. When our son was diagnosed nearly 4 years ago, we felt completely isolated and alone. Discovering others who understand what we were going through was a godsend.

Hi Erika!
Welcome. I was diagnosed when I was a toddler in the 80s, so I can only imagine what my parents were going through when I got sent to the hospital.

The progressions and steps diabetes care has taken has greatly improved from when I was first diagnosed. Data is at your fingertips and things are so much more accurate and faster than what they used to be. But still - it’s such a life adjustment because now you, and your daughter in the future, will rely on numbers and data and technology. It’s mind-blowingly overwhelming.

The key to my care when I was little was my mother. She was my advocate growing up. When all the doctors say, do XYZ, she stood up and said, No because Jen does QRS instead. You will learn your daughter’s trends better than anyone as she grows up, so don’t be afraid to stand up and ask questions - when you figure out which ones to ask. (Just ask them all… nothing is dumb when it comes to the health and well being of an individual.)

While the DOC (Diabetes Online Community) and these forums are a great resource, I highly recommend looking up your local JDRF chapter to see if there are support groups for families with diabetes. That way, you get personalized, face-to-face interaction (and hugs). You may also want to look up summer camps for your daughter and your family. (We did that a lot as a family.)

Hang in there.

I just want to give you a hug. Everything else I have to say has already been said.

My daughter was diagnosed 15 months ago right before her 11th birthday and I remember the pain so vividly. I remember the “why us? what did we do to deserve THIS?”. Being so scared that I really just wanted to leave her at the hospital for them to take care of her. The constant crying.

As said above, I promise you - you will not always live in a state of fear.

Another hug from me. <3
-Carli

Hi @GabbysMom11,

I am so happy you found us! You have gotten a lot of REALLY GREAT ADVICE! Every single person on this site has felt what your family has gone through at one point. There is nothing I can really add to what has been said already! And, I agree with @seejendance and you should get involved with your JDRF local chapter to get the face to face with families too. It is also a great way for your daughter to feel less alone and make new friends too! Here is the link to find your Local JDRF Chapter http://jdrf.org/locations/ just plug in your zip code on the left hand side where it says SEARCH.

Please hang in there and know we are here day and night!

::hugs::
~ Gina
TypeOneNation Community Manager

Hi,

I am sorry about your daughter’s diagnosis; but, please know that she (and your family) will be OK.

My sister was diagnosed in 2001, when she was 7, and I was diagnosed 5 years later when I was 22. (And I just had my first baby - totally healthy! - eight months ago).

The most important thing that I can tell you is to take a breath. You are all overwhelmed and scared and everything probably seems impossible, but before you will believe you can be, you will be living your life in a very normal way with diabetes. Everything is possible.

One small suggestion that I do have is looking for the OneTouch Delica “pricker” (lancing device) and lancets. I have found this to be the most gentle/thinnest one around, and I may help your daughter a little bit. It’s available at most drug stores. Pricking her finger is not going away for the foreseeable future, but she shouldn’t feel like she’s being harpooned either!

Good luck. You will all learn, and you’ll be great!

Hi Erika!

Hugs! Everything will be ok. My son was diagnosed a little over 4 years ago, at the age of 6: Right before Halloween and a week before his 7th birthday. I knew nothing about T1D. I was driving home from the hospital crying that my poor kid will not be able to have any candy that Halloween… Well, fast forward a few days: he had a super fun Halloween and had just as much candy as was allowed before D. Fast forward another week: great birthday party, with cake and treats, no different than before. Fast forward… etc, etc. My point is that you will all adjust, and make this work. You will find how to make the life just as rich and amazing, even with T1D in the picture. You are already ahead of those who never reach out for support - you have an incredibly caring and knowledgeable community at your fingertips. We parents of T1D kids really stick together. Don’t hesitate to post your questions here - we have all been in your shoes at some point in time, and chances are that someone will be able to help in any situation.

You will learn faster than you think: before you know it you will have a much better understanding of how to best take care of your daughter.

Reach out to your local JDRF chapter. Many chapters organize events and get-togethers, which are a fantastic way to get to know other parents and exchange tips and ideas for everyday life with T1D.

Hugs and good luck!

It’s normal to be overwhelmed at first. Your doctor has given you good advice and you will figure out the rest as you go. Do you remember how scared you were when you brought your first newborn baby home from the hospital? Then over time you grew into being a parent and were soon a pro (or at least looked like one?), it will be the same with managing diabetes.

Call you insurance company and find out what type of glucose test strips they cover then use that kind of meter. Most meters are fine, so use whatever is cheapest. I was diagnosed before meters existed, trust me, a finger poke is better than urinating on a test strip and seeing what your blood sugar was a couple hours ago!

As hard as this is, the reality is that 100 years ago your daughter would have died from diabetes. I wouldn’t have made it to my 5th birthday. But now I’m 40 and have a son of my own, a nice husband, and a normal life. It is different because of diabetes, but it is a good life and I wouldn’t trade it. Your daughter is going to be okay and you will be too.

Hi Erika!

I so feel your frustration! As parents we want to fix things. We see a number and we want to know what to do with it right away. We want to make this giant smaller, and more manageable. In the beginning the pancreas tends to sputter and help out, so keeping your daughter higher is prudent, if only for a while. Safety is key…your doctors are trying to avoid the lows right now.

It won’t be long before the numbers take over. You will have memorized an action for every single number. There will be very few numbers you can just leave alone. When this happens remember your child isn’t that number. Remember that the disappointed look you have when you see a high, your child can see. That worry when she is low? She can see that too. Please, try not to take the numbers personally. They are simply a map to where you want to be. They tell you to go left or right. There are no good ones, and no bad ones, they are all actionable. (Or soon will be.)

I also exhort you to call your endocrinologist and tell them how uneasy you are. Ask for more training. Ask for more explanation. They might not be able to give you all the answers, (Like how long the honeymoon will last…honeymoon being the length of time your childs own insulin producing cells will still play a roll,) but they should be able to explain insulins, how they work, and later, the sliding scales you will use to bring her numbers back to a comfortable place.

Numbers will never, always be perfect. We live each day trying to hit a moving target. It is part of the beast. But I promise as you sprint out of the gate, you will eventually find your stride and your muscles will grow with determination and knowledge. You’ll learn something new everyday. I still do, and it’s been 15 years we’ve been living with diabetes. I have three boys with Type 1. The 16 year old diagnosed at 8 months. The 12 year old diagnosed at 5 years. The 10 year old diagnosed at 2 years.

The fact that you are here shows me you are going to be an amazing advocate for your child! Keep it up! Even with this new life, she can, and will, have an active, wonderful, adventurous life. All is well! Your family can do this!

I wrote this blogpost for newly diagnosed families. I mean every word. Sending all my love your way!

Hi Erika,
I read your post and felt I had to respond. First off, I’ve had Type 1 Diabetes for 19 years. Although I cannot give you any direct medical advice I can say that I have never heard of a newly diagnosed T1 NOT being admitted to the hospital. Also if your daughters blood sugars are running that high constantly she could go into DKA. If what you wrote of the advice the endocrinologists gave you is true, then I would QUICKlY be getting a second opinion. I don’t know what Hospital you went to but I would like to know whats going on there. Children’s Hospital of Pittsburgh has an excellent Diabetes Center; I would start by calling them for advice on what to do.

Sincerely,
Caterina

Hi Erika, I just finished reading your post and I can relate as my son was recently diagnosed with T1D on Dec.23 2013. He also had the same symptoms as your daughter and he was admitted to the hospital as he had DKA.
At first, the diagnosis didn’t register in my brain as he is a young boy. 13 yrs. old. I thought diabetes was for the older generation as it runs in my family. They’re all type 2 diabetics diagnosed at 50 plus years.
It’s been a tough road but hang in there, it doesn’t get easier but manageable. Arm yourself with knowledge. There are excellent books to read. Think like a Pancreas by Gary Scheiner, Type 1 Diabetes for dummies, Dr. Bernstein diabetes solution, Blood sugar 101 to start off with.
Use your diabetic team of doctors, nurses and support groups. Ask your dietician carb-insulin ratios and snacks in- between. Good questions to ask I find are what do do if your child is sick. Increasing insulin doses and decreasing them.
If your daughter is scared to check her blood sugar, get her a lancing device with a 33 gauge lancet. They’re much smaller and thinner. The higher the gauge the finer the needle. If she doesn’t like getting her insulin pens, use a frozen spoon as it numbs the area. My son does this.
If you have any questions, just ask me or pm me, I like chatting with other parents that are in the boat as we are as the support is great on these sites. Try diabetic group support on Facebook and diabetesforum on line.
Good luck on your journey and never hesitate to ask questions even if you feel they’re stupid.take care