Thank you so much everyone.
@marylove, so glad to see you join us, I look forward to reading your posts!
Feel free to talk more about yourself if you wish!
Hi! My name is Nicole and my husband’s name is Phil. First off, I’d like to thank all of the founders of this site. It has been incredibly helpful and I look forward to reading more threads.
Our oldest daughter, Carmela, has T1D and her/our story is as follows.
Carmela was born in NYC at the end of March 2014. We had her with no family present at the hospital so we had little parental distractions. Our plan was to move to SW Virginia where my parents and sister resided.
In December 2014, we quit our jobs and we moved into our first home and everything seemed to be going just fine. Our second daughter, Josiephine arrived in September 2017.
We were really happy and it was much less stressful this time around since we didn’t have plans to change jobs, move hundreds of miles, and buy a house. However, Carmela seemed to be coming down with frequent sinus infections during this time and was very reluctantly taking Amoxicillin. She was also prescribed an inhaler because the doctor heard a bit of weazing during one of our visits. About three weeks after we brought Josie home from the hospital, Carmela started exhibiting strange behaviors such as urinating through her diapers during the night and then begging us for water as we were changing her sheets. It was alarming but we honestly had no clue. On the third day, we called the doctor and spoke to a nurse who said “why don’t you cut back her water intake before bed so she doesn’t urinate so much”. This was genius. Why had we not thought of this? I knew that it was bad advice but having a newborn I wasnt thinking clearly.That night Carmela woke up at about 10:30PM complaining of stomach pain. My husband took her to sleep in our spare bedroom. He woke up at 3AM to Carmela vomiting on his chest. At this point we knew something was wrong. In the morning, my mother came to our house with ketone test strips. She had suspected that it could be Diabetes but we all thought it was highly unlikely because no one on both sides of our family had Type 1. The ketone test indicated the presence of large ketones and at that point we became scared and worried.
We took Carmela immediately to her pediatrician and within 30 minutes was told this was the onset T1D. They reassured us but said this was a medical emergency and sent us to the ER. We spent three days in the hospital nursing her back to health, fighting anxiety attacks, and trying to learn the basics of how to keep her safe when we went home.
At this point, I am trying to learn everything I can in order to teach her to be independent and manage her diabetes. I want to instill in her that she can still do anything she wants to do and this will never hold her back. She just got on the omnipod pump and she also uses a dexcom CGM.
In my former life I worked in the fashion industry, now I am a yoga instructor and take care of our daughters. My husband is a CPA.
Welcome @Nicole! There are many members here with PWD children so there are a ton of resources for you. Look forward to seeing your posts on the future.
Welcome, @Nicole! I was in bed turning in for the night and read your introduction and just had to get up and come downstairs to respond because our stories are SO similar. First, welcome to FUD! You will find SO many people here who are so very helpful and who can relate in more ways than one, to what you’re going through right now. There are many parts of your story that I’d like to respond too, so I’ll just start!
Our son, Liam was born 12/30/2013 so they are so close in age! Liam was diagnosed on February 29th, 2016 – he just recently celebrated his TWO YEAR DIAVERSARY! Can’t believe it’s been that long already. The first few months we struggled through everything, but we feel like we’re armed with the right kind of ammunition now to help Liam lead a full, healthy and happy life. The people here at FUD are the ones who helped @ErinElizabeth and I when Liam was first diagnosed and they’re still here today providing that ever important information.
Where abouts? My family all mostly live down in SW Virginia. They are scattered around from Roanoke all the way south down to Blacksburg/Christiansburg, Radford, Fairlawn, Pulaski and Draper. I grew up in Draper and Dublin, VA.
This was exactly us. No sooner than we changed Liam, his diaper was already full again and he was “thirsty”. Always thirsty. He was going through a gallon a day easily. I’m not sure if you’ve read his story yet, but here’s my son Liam’s Story. We were also in the hospital for 3 or 4 days (I don’t even remember anymore) while they figured out the “right dosing” for Liam so that we could take him home. When we first came home after that initial ER visit, we were calling the Endo team literally 5 or 6 times a day so afraid we were going to kill our son.
Things are drastically different today, having been living with this for over 2 years now. We visit our endo every 3 months (whether we need to talk to them about anything or not.) Our last A1C (I believe?) was 6.7%. Our goal is to try and stay under 7%, but our biggest goal is to just avoid hypoglycemia as much as possible.
Liam uses the Dexcom G5 as well as the Omnipod so we’re well versed on both of these pieces of technology. Our lives became SO much easier once we got him on the CGM…before that point, I wasn’t sleeping, hardly ever, because I was just wondering if my “peacefully sleeping” son was sleeping, or in a coma, or worse. The ability to see his BG’s on the receiver/phone has just been a lifesaver for us. We moved to the Omnipod because he didn’t like the many MDI shots we had to give him every day and, although he doesn’t like the Omnipod shot every 3 days either, it’s still only 1 shot every 3 days as opposed to 6 or 8 shots every day.
My wife isn’t a CPA, but she is an accountant and, before deciding she’d rather be staying at home full time as a mother for our many sons, she was an accountant for HOA organizations.
Please know that I’m here anytime you need any questions answered pertaining to dealing with a child our kids ages. @TiaG also has a son, Samson who is around our kids ages and Tia is a very intelligent lady is always willing to help as well.
If you have ANY questions at all, please feel free to PM me and I’ll help you and your husband out, day or night. Those initial months were SO tough for us, but the people here made it so much easier for us than it could have been without them.
Don’t hesitate to reach out to me via PM or, if you need or want to talk because things are especially stressful or you have questions, I’m happy to give you my home/cell phone number. We’re so close (both in VA) we should consider getting our kids together to let them show off their devices to each other!
Take care and again, welcome to FUD! I know you’ve been here a while, but I wasn’t aware of your story, or that we had so much in common!
@Nicole, welcome again!! I am so sorry for your daughter’s diagnosis But she is very lucky to be your child, and she will be fine!
I really look forward to seeing you here!
Hi @Nicole, welcome to FuD! Our son Samson is about the same age as Carmela, he was born April 2014. He was diagnosed almost exactly two years ago, on St. Patrick’s Day 2016. I’m happy to answer any questions you may have about our experiences.
This is a great place to learn about diabetes and more than that – to see others who don’t let the disease limit them. We’re pretty cautious people and our first instinct as parents is PROTECT! SHELTER! – but we didn’t want Samson to feel like his life was restricted. Advice from people here has been invaluable in helping us put Samson in activities we were nervous about, in letting him eat foods we were nervous about (until now they are no big deal), and so many other things.
Hi @Nicole, welcome to FUD.
I was diagnosed at age 5, with my mom noticing similar symptoms of peeing more frequently, and getting up multiple times during the night. I would pee, drink, return to bed, then repeat !
But that was over 50 years ago. My mom took me to the doctor, thinking maybe a UTI, instead we were sent directly to hospital admission.
My mom learned to do injections on an orange, and I was sent home after 10 days. But things were much different back then. One injection per day (lente), urine testing, and no sweets. Life went on without many other changes (for a while)!!
Although great advances have been made, it is certainly a more intensive change for today’s diagnosis and you have found a great place. Your daughter can most certainly become independent and successful at self management, especially with the tools that are now available, and maybe more importantly finding peers with T1D as she gets older. I did not meet another T1D until I was 21!!
Hi everyone, this looks like a great place and lots to learn, which is exciting! I have to confess that I’ve probably not really been on any diabetic forums for about eight years, I don’t remember any being anywhere near as interesting as this one
I’m 45 years old and I live in a beautiful Shropshire village, near historic Shrewsbury in the UK with my wife and four year old daughter. We all love the outdoors and I spend a lot of time mountain biking, hiking, running and generally being as active as possible, I also do quite a few car trackways in the UK and Europe, although I don’t have as much time for those as I did when I was younger. Another passion of mine is reading, whether its Sci Fi, Science, humour, life or whatever! I am a University Lecturer in Sport Rehabilitation, which for those of you in the US or Canada is very similar to Athletic Training / Athletic Therapy. I tend to come across to the US and Canada on a fairly regular basis with work, although I am trying to cut down on overseas trips and spend a lot more time with my family and a lot less time working.
About my diabetes history, I was diagnosed at 24 and I’ve had some interesting experiences with a huge amount of unpredictability in my control and response to insulin. I now tend to go with it a lot more (surf the wave as better people might say), accept that I have periods where I am incredibly responsive to insulin which means even on minimal amounts of insulin I can post in rather silly amounts of sugar with never a rebound or a high (today it appears impossible to get it over 7 mmol despite lots of glucose), it also goes the other way at times despite checking and changing everything. I also have inflammatory bowel disease which is somewhat of a negative; the positive of this is that I am funded for a CGM by the NHS which helps a lot. I have been using various CGM systems for > 8 years (at a guess), Medtronic to Dexcom and currently using the 640g and associated system whilst I wait for my Dexcom G5 transmitter which I will feed to my iPhone and Apple Watch. My HbA1c is generally 5.8 - 6%. I absolutely love the Dexcom and it works brilliantly for me, its just the interfaces I wish were a bit better, although lots of people are working on that. I have quite a restrictive diet, which I am sure I will talk about in a discussion at some point.
Hopefully I can contribute to the forum in the future, I’m just looking forward to taking it all in for now!
@ClaudnDaye, slightly off topic, but is the star still shining on Mill Mtn?
I haven’t been there since I was kid, but my parents/family go the zoo/park a lot and they indicated it’s still there.
That’s awesome! I used to go to camp at the foot of Sheffield Rd when I was a smaller person.
@SteA, glad you found us. We try to be exciting, but sometimes we only succeed in not boring! As I am sure you have found in your reading, we are a motley crew of folks that enjoy testing a sharing what works and doesn’t work. Looking forward to finding out more about what works for you. Your A1c is certainly enviable.
Welcome to the site SteA! Glad to have you here. Good to have some runners.
Welcome, @SteA! Looking forward to reading your contributions to our community, and learning! Great A1C
Thanks, I’m not sure I deserve the term “runner” about an hour is my max and its not exactly quick at the moment, I spend a lot more time on my mountain bike… I tend to run when time is limited and I just want to get some exercise in and chill out on the local trails!
Does this apply if you run only when being chased by something like a bear?