My 15 month old son was diagnosed on Jan 18. We are obviously learning the ropes, but wanted to get feedback and/or suggestions from people on CGM therapy and pumps for such little ones. Anyone have experience?? Thank you!
I’m sorry to hear about son. Our son Jayden was diagnosed dec 2014 at 20 months. We had him on a cgm and pump within 4 months. Animas ping pump has been great…feel free to respond with any questions.
Sorry to hear…I have just over 6 month Type 1 diagnosed 13 yr old . I have attended the local events - summits and seminars with others thru JDRF… I have learned and gotten alot of great information and leads to where to find. Also a camp is coming up and am sending her to be with and interact with others on her own. This site will also connect you with parents to help you out. Good luck and welcome to learning…
Good morning. I am terribly sorry to hear about your sons diagnosis, but can tell you that you’ve found the right place for support. JDRF is doing incredible things!! Anyway, I have three sons, two of whom have T1D. My youngest was diagnosed at the age of 13 months, so I can related to what your going through. Jake was put on the pump, after a great deal of advocacy on our part, just before his 2nd birthday, and it was the best decision we ever made. Trying to manage dosing on such a small kid can be difficult at best. CGM is a god send, and with the latest technology has made life much better. Over the past 13 years we’ve used just about every pump and CGM on the market. I’d be happy to give you my thoughts about the pros and cons of each. Please feel free to email directly at email@example.com and I will be happy to talk with you about any of this stuff. In the meantime I wish you and your family the best of luck - you WILL learn how to adapt and overcome and it WILL get easier!!
Sorry to hear that your son is diagnosed with type 1 diabetes when he is 15 months old. I was diagnosed with type 1 diabetes when I was 24 months old back in 1960s. I have type 1 diabetes for nearly 50 years. Trust me, your son will have lots of struggles like people with type 1 diabetes struggle for many years. I never have any pumps, DEXCOM, CGM, and alert dog in my whole life. Back in 1960s, children with type 1 diabetes did not have very good treatments, but children with type 1 diabetes have better treatments now than before. I grew up exercising for many many years since exercises stabilize my blood sugar very well (please watch out for low/high blood sugar level). I have no complications yet (knock on wood). It is very important for your son to see his type 1 diabetes specialist/diabetes nutritionist (not a family doctor) every 3 to 4 months or every six months. Remember type 1 diabetes is like a roller coaster (high blood sugar/low blood sugar). Hope your son is doing well!
No offense but your well intentioned message might have been a little unnerving for these folks facing this new and certainly scary situation. For old hats like you and I not so much. Yes DM can be a bit of a roller coaster at times, but life is also like this at times for everyone. I was diagnosed as a young teenager and have had DM for 35 healthy years, so I can’t comment on your struggle, but I do know that there are plenty of healthy happy people like Michael that were diagnosed as young as your son before therapy was all it is now. Trust the med professionals, but educate yourself and trust yourself as well. Lots of people will tell you this or that doctor is ‘great’ but the best one is the one that you can work and interact comfortably with. There are good research studies going on that you can enroll in, see a place like Joslin for info., this puts you in touch with the latest and greatest thinking about DM.
best to you
I’m somewhere in the middle on discussions like this. I’ve had Type 1 for 32 years since I was 16. I’m all for keeping hope alive and encouraging people to do the right things so they can lead a full and productive life. But I also get concerned when I hear parents who are desperate for a cure and asking when it will be here, because the reality is that we need to prepare to live with this crazy disease for the rest of our day. So I empathize, but it’s misdirected and unproductive energy. Manage what you can, but find times when your kid can be a kid too. Being vigilant to keep your child’s BG in normal range as much as possible, it stands to reason, will yield the best results because his body will act “less diabetic” over time that way. But living super rigidly does not usually produce happy people, and there is some trade-off so you and eventually your son will need to find a happy place. He will make errors, he will fall off the wagon sometimes, he may experience depression, but he will find his way in time. I also get concerned when people say you can lead a totally normal life with no compromise on lifespan or insinuate that complications are rare, because they are not. The reality is that most people do experience complications at some point, especially after 25 years or so. Many of these folks have taken excellent care of themselves, but genetics have not been kind and let’s face it, trying to mimic a useless pancreas takes its toll. Others have had it for 50 years with poor control but have minimal or no complications, or had them in the past and they were able to be resolved, such as eye damage. Don’t get me wrong - we have some amazing tools these days that we didn’t have in earlier years, like fast and accurate meters, pumps, CGM, and trending software. But these tools don’t change the fact that this is a very serious disease from which we never get a break. It takes constant vigilance and a MAJOR sense of humor to get through. And support sites like this one help us share our frustrations with people who “get it”. Like gblands, I figure that making it through 25 years is a big achievement, and I consider it both a duty and a privilege to share what I can with the newbies to learn as much as possible and do sensible things, but also to embrace life and find a balance that works for them. As for this parent of a new and tiny Type 1, it’s amazing what pumps and CGMs can offer little ones. The most frustrating part is they can’t communicate with you yet, and these tools can offer a level of fine-tuned management that can make all the difference. I hope you do look into it because this technology just gets better and better!
Thanks for the uplifting comment ScottKasper! Yes! The dosing is the biggest issue. 1/2 units is obviously as small as a syringe can go, and often times he needs more than .5 but less than 1, so we are stuck giving him .5. We are in the process of getting the CGM now, and although we want to get to the pump, we’re both nervous about him keeping it in. Did you have any issues with your little guy pulling it out constantly? (The endo did mention heavy duty tape, hiding it under clothes, etc.)