Hello, I hope this is the right place. My 4.5yo was diagnosed 6 days ago with t1d, and I feel so terribly sad about it. We don’t know any other diabetics, so I’m trying to research on the web, which is terrifying and depressing in equal measures. The hospital were fantastic and tried to reassure us, but I feel such grief, every time I see a kid happily skipping into a sweetshop, a teenager heading to the pub with friends etc i feel so sad that she won’t be able to be so carefree. Just cant stop crying. She seems so grumpy now too, like a different child, but I suppose we are still early days with the sugars. But our happy little life seems to have clouded over. Sorry to be so negative, from my quick readings you all seem to cope so well. Please tell me it gets easier?
Welcome to the right place!! I ran my own show, little medical advice, from 1984-2008, when, after I ordered a pump, I discovered online diabetes. I have always gravitated towards message boards for information as my experience with fantasy baseball proved that you will get much better answers to questions like "who is the best of these 5 bottom-of-the-barrel 2B" or "what should I do about my basal rate?" than you will on twitter/ blogs/ FB, etc. Or, quite possibly, than by asking your doctor. Although it may be intimidating reading suggestions from weirdos named acidrock, who spent *a lot* of time in pubs, playing in filthy punk rock bands and hanging around other dens of iniquity...
I agree that it is very difficult to be carefree but, the thing I've realized, is that as long as I have my gear with me, insulin, testing supplies, I can do just about whatever I want, although the whole pump/ cgm/ things plugged into my abdomen has sort of soured me on swimming. That's a choice though, not a must. If I really wanted to swim, I could come up with a solution. I would also have to get up earlier to drive across town to go to the pool. I made an exception to try surfing a couple of years ago though.
If you play your cards right, it will make your daughter, smarter, stronger and more engaged with herself and the world around her. She should be able to do whatever she wants to in the world but should do so with enough supplies to test her BG when she wants and enough sense to know how to make smart choices. This sort of goes for everybody, with or without diabetes but having the tools is critical. It looks like you're in Ireland so I hope that the health care system there is up to the task of giving her what she needs and supporting you as well.
This most definitely is the right place, Fiona and I'm so glad you're here. I'm an adult onset Type 1 not a parent but I can only imagine how helpless you feel right now. It's an overwhelming diagnosis especially for a parent of a little girl. What I want to tell you right now is yes, yes, yes...it WILL get easier! I'm not going to lie to you and tell you it will get easy, because it won't. It's a 24/7 condition and something always changes, especially with children. But the time you are in now is the hardest. There is an enormous learning curve (I heard someone call it "everesty") and it is emotionally overwhelming. So as you learn and get into a routine it will start to seem more manageable.
And in the long run, whether there is a cure in her lifetime or not, your daughter can live a long and happy life and do whatever she wants with it...anything! She will learn to accommodate her D and then she can do anything with it she might have done if she'd never had it, and like AR said, it will make her stronger.
What I would suggest is to get as much support as possible. You've come to the absolute best forum on the web, and also check out the parent's group here. In addition I suggest you see if there is any organization in your area where you can connect with other families as it will help you tremendously to talk to other parents who truly understand. And for your daughter, if they have Diabetes camps where you are they are a wonderful way for a child to connect with other Type 1 children. I have had many adult Type 1's tell me they absolutely changed their lives.
Ask any questions you want on here. Get the book Using Insulin by John Walsh and I personally would suggest setting your site for just "forums" that way you'll see all the posts which I find very useful. I learn something from everyone. Welcome!
Zoe
welcome to tuD, fiona. first, i am so sorry you and your Little girl have to deal with this! it is a big adjustment and i cannot imagine the grief you must feel for your daughter. its one thing to have this yourself, but for your child to get it must be heartbreaking.
as acidrock said, your daughter WILL be able to do whatever she wants! she really will-it will take more planning and finesse, but she will.
i remember when i was diagnosed, i was completely lost as well. a month into it, i knew so much more and felt so much more confident. a year in and i felt like an old hand. well, almost. i found an old notepad that i brought with me to the cde on diagnosis. i was floored by the questions i had-a year on they seemed ridiculous. it does get easier, every single facet of it gets easier.
good luck with everything in these early days and beyond. keep us posted and let us know how youre doing soon!
Welcome to this site, you have found a great source of info and advice from a multitude of people either just starting at as yourself and your family are, or who have had years of experience. My very first advice if you are able, start her on a pump as soon as possible. The flexibility this affords is incredible. I waited approx 27 years to make the switch, and the control I have achieved has been just INCREDIBLE> Second, please do not ever feel like this limits her in any way. Her life might not be as SIMPLE as other kids her age, and will require carrying around a meter, but it should not limit her at all. She can and will be able to be a carefree child. Please don't think she can't EVER have a candy or ice cream or cake. Within moderation these things ARE possible. Maybe not on a daily basis, but for her birthday, a friends birthday, etc with learning to carb count, and frequent testing to see how she manages these occassional events, and correction if needed. The occassional celebration should not be something that is removed from her life. It's all trial and error at first, but eventually even this becomes easier. Please don't hesitate to ask questions, we are all here to help.
Welcome to the community, Fiona. You'll find it to be a bottomless well of emotional support and shared experience and knowledge. You have absolutely come to the right place.
And yes, it will get easier. The very beginning -- which is where you are right now -- is the hardest place. There is a lot to learn and it can seem pretty overwhelming at first. The key to dealing with this flood of knowledge is not to try to master it overnight. Take small steps. Ask questions. Learn one or two things each day. The picture will come into focus sooner than you think. We have all been there and traveled that road.
One thing you should do right away is to join this discussion group
When you're able to, there are several really excellent books that are worth reading:
Think Like A Pancreas, by Gary Scheiner
Dr. Bernstein's Diabetes Solution, by Richard K. Bernstein
Using Insulin, by John Walsh
It is possible to control diabetes, but it takes effort. A friend of mine, Bob Dornhecker, has been doing it for 75 years and is still going strong. So don't let anyone depress you with gloomy predictions. How it turns out is entirely up to you.
Welcome to the family!
Fiona, you are indeed in the right place. besides the parent's group here (which I just looked, has some discussions on a new dx)
http://www.tudiabetes.org/group/parentsofkidswithtype1
please take a look at this lovely group
http://www.childrenwithdiabetes.com/
they recently held their 5th "Friends for Life" conference UK in Scotland. Our members here who have attended the US FFL absolutely RAVE about it, it's an event for the entire family affected by diabetes.
also, please look at our admin Lorraine's blog
http://thisiscaleb.com/
her son Caleb was dx at age 3 in 2007
she describes feelings similar to yours when Caleb was dx. She's been there. Caleb is thriving and active in many sports.
I'm so glad you're here with us. I've had it more than 45 years, and there's simply nothing that has helped me deal with my diabetes more than being a member here. Please let me know if I can assist you with any questions you might have.
BIG HUGS!!!
Don't worry about it. In a few months, you can feel better by helping someone new out!
That is a great attitude. One more word of advice, I know 4 is young but as she gets older, include her in more and more of her own management activities. Maybe right now with supervision, let her when testing put the blood on the test strip, push the plunger once her injection is given, etc. As she gets older the more and more she is allowed to run it the better she will be when it is totally on her to own it at managing and making the "right" choices. I know that is a long ways to go, but including her now and supervising will make that transition easier. And I agree, if she has to have D, being the age she is now where healthy changes can be made easier, WILL become part of her norm. None of us know what the future may hold, but she's been diagnosed where management has been better and the tools to do that management are out there and available. There is absolutely no reason why she will not grow up and have a happy, productive, and fullfilling life. Children too someday if she wishes.
that is awesome cheri, so glad your boys are doing so well!
That is the perfect attitude. You and your family are going to handle this brilliantly, I predict.
Fiona,
Don't feel bad about your daughter's future....she can do anything she wants to do. Yes, it takes time to get used to the daily management activities and there is no doubt this condition can be a pain in the you-know-what, but there is no reason to let it stop her from living her life.
I was diagnosed (as an adult) in 2011 so the feeling of what that was like is still fresh. Initially it was a shock and depressing, but since then I have traveled internationally, and recently just got my medical certification for piloting back, so I am not letting it stop me.
There is a great blog my one of the admins here, Lorraine, about her son Caleb.
here it is:
http://thisiscaleb.com/
If you watch some of the videos, you'll see Caleb doesn't let diabetes stop him... when I saw this, I found it quite inspirational and figured if he could do it, so could I.
Here's a great video he made:
Fiona, what a great list !
I was diagnosed at age 5, in 1965, and agree totally with your item 2. I don't remember any life w/o D. I do remember my kindergarten teacher bringing a basket full of gifts from the class the day after I got home from the hospital !
Things were much different in 1965, and it was accepted that complications within 25 years was the norm. But so much has changed, and very good chance that your daughter can be complication free.
I clearly remember being at the doctor's office, when my Mom was told I had diabetes and had to take me directly to the hospital. Her voice quivered as she called my Dad at work. I don't actually remember hearing 'diabetes', but I certainly remember the sound in her voice, and can imagine you felt the same.
Try not to worry too much, as she will pick up on that. Keep reading the list you just did, add to it, and you're well on your way to adjusting to whatever comes up.
Oh, yeah, one more thing. Now that your daughter is being treated and her blood sugar is coming down, she will start to feel better, have more energy, and her mood will likely improve. It may take a little time for her to gain back the weight she may have lost when her blood sugars were uncontrolled, but now with the insulin she can use the calories she's eating and will have more energy.
You have already received a lot of good advice, I simply wanted to say I am sorry and that what you are feeling is normal, it will be ok, you are your daughters best advocate and she will adjust, you all will! I wasn't dx with type 1 until I was 37 however my brother was dx with type 1 as a toddler. I also have identical twin nephews who were dx within 6 months of each other at age 7/8ish, that was a few years ago. They now are both on pumps and are active, healthy boys. They play soccer and baseball and basketball. They play with their friends and they are, even at their young age, very versed in diabetes...carb counting, bolusing, pump adjusting etc and overall are both pretty remarkable and well adjusted, smart, happy kids. Their parents (my SIL and BIL)are also remarkable, I watch them and think sometimes "how can they keep it so together!" But they do, they are ok, the boys are ok. I have a 5 yr old and a 3 yr old so I can understand how overwhelming this must be, I worry about my kids developing type 1 all the time, it's always in the back of my mind, as parents that is what we do, we worry, we fret. I just wanted to welcome you and wish you and your daughter well! Sending you hugs and good thoughts!
I don't know if I can add anything that has not already been said. Reading thru the replies in this discussion I am blown away by the amount of love and support I see.
You will never be alone in your journey with D you will always have the help and understanding of communities like ours here at TuDiabetes.
Hi Fiona,
I can't add very much in addition to the great comments that you have already received. It will get easier. Your daughter will live a normal, happy, productive life. I was diagnosed at 2, so can empathize with her. It's scary at times, it's frustrating at others, but it will definitely make her stronger. And now that you've found this site, you will hopefully understand that you may not have any other T1's in your circle of friends, but there are TONS of us out there, and we are more than happy to help. If nothing else, we're here to listen, understand, and offer some first-hand advice and knowledge. It's OK to grieve the loss of your daughter's carefree lifestyle, but you'll both eventually get over feeling sad, and instead, embrace the change and make it a part of a new, healthier lifestyle. All the best!
Hi Fiona!
Welcome! I am soooo glad you found us (and equally sad you had to).
You are light years ahead of where I was 6 days after Caleb's diagnosis. Just take one day at a time, ask questions. Then ask more. Vent away. We're here.
- Lorraine (mom of Caleb)
Fiona, I know how you are feeling, because I just went through the same thing on Feb 1 when my 23YO daughter was diagnosed with T1. Granted your daughter is much younger so I know your situation is somewhat more troublesome, but I definitely know your sadness. Let me say that I agree with the comments you’ve read here. It will get better. She will be able to live a healthy active productive life with some minor inconveniences. My daughter went on the omnipod a month ago and it has truly changed the quality of her life. My biggest advice is to find a good endo that you are happy with. This is definitely a great community from which to get support and encouragement. If you are one to read blogs I highly recommend one called Arden’s Day by Scott Benner. His daughter was diagnosed younger than yours and he has written a great book called Life is Short Laundry is Eternal. My daughters blog is theresloveinitall.blogspot.com. Keep us posted on how she’s doing and Im praying for you both.