My 2 1/2yr old just diag. with T1, where do I go from here?


(JoConnolly) #1

My youngest was just diagosed with juvenile diabetes May 29th, 2009. I am learning all I can about this disease and keeping him happy and healthy. I dont have anyone I can relate to, and share stories and experiences with. I need friends,..PLEASE help me.


(Gina) #2

Hi Jo,

So sorry to hear about the diagnosis. The best thing to do is to learn all you can about diabetes. If you know about all of the latest technology that is available it will make things much easier for you and your child. See a nutritionist, endocrinologist, CDE, pump trainer as well as other doctors like opthamologists, podiatrists and dentists. 

This is the best place to get advice, help and support. You can vent your frustrations here because at least one person has gone through or is going through the same type of thing at one point or another. 

We will help you through it! Hang in there!


(paulg765) #3

Hi Jo,

 

Being that I'm located in Binghamton, NY,  I'm probably a little closer to you than most of the Juvenation members.  The nearest chapter of the JDRF to you (and to me) is located near Syracuse in Liverpool NY.  Here is their contact information:

Juvenile Diabetes Research Foundation
Central New York Chapter
100 Metropolitan Park Drive, Suite 400
Liverpool, NY  13088
Tel: 315-453-9327.  Fax: 315-453-9355

This would undoubtedly be a good resource with which to investigate doctors and support groups. 

How was Aiden diagnosed?  I assume he's already on insulin by injection and that you're already monitoring his blood sugar, yes?  How is all this going so far?  Have you connected with a good Pediatric Endocrinologist?  Have you begun reading any books on Diabetes yet?  Does anyone else in your family have diabetes?

I've been a Type 1 juvenile diabetic for 39 years, having been diagnosed when I was 17.  I also have a 25-year-old son who was diagnosed when he was 5.  The beginning can be pretty confusing and demanding, but you will surely settle into a routine.  Aiden will be fine and will be able to lead a productive, satisfying and happy life.  I also believe that we are very near a cure, and that it will quite possibly occur while Aiden is still young.

Please feel free to call on me anytime.  If you'd like to speak by phone, let me know and I'll give you my phone number.

Paul

 

 


(JoConnolly) #4

Thank-you for the info! We have been to the joslin center. They are so great there. Well Aiden was diagnosed when I had noticed him excessively drinking/not eating and urinating, and he was grumpier than usual, and he was afraid of some pretty whacked out stuff. So I took him to his pediatrician and we agreed that we should check his glucose level and with him fasting for at least 8 hours his bg was 259, they drew blood found that his a1c was high and sent us to the joslin center immediately, There they gave us the rundown, education and information overload you could say, I was still in shock. Spending the day there we got him on lantus and got our meter and scripts. In denial over the weekend my wmotions were like a rollercoaster, I just couldnt figure out why this was happenening to my little baby who was fine just the other day. We went back the wed after and got some more info on his diet and how to calculate his novolog( more shots ) : ( I am dealing a little better now, it's just so surreal.

 I have'nt gotten any other books than the ones provided, but I will, there are so many. Come to find out his dads side of the fam has quite a few people with diabetes and on my side there are a few autoimmune disorders which all contribute a little something I guess. I'm finding it hard to manage everthing all at once and am learning to just let the little stuff go. : )

Thanks for the reassurance! Our family is working hard to donate as much as we can to the JDRF, we are particpating in the walk this year. I have read lots of things on the research they are doing now and it looks promising.

I would love to talk to someone who has some more insight on what we are dealing with, thanks a buch. ttyl


(JoConnolly) #5

I am learning as much as I can, and our family is working hard to do everything we can to help find a cure. We have been to the joslin center near us, I will be setting him up with a podiatrist and dentist to keep him doing well, thank-you for your support and advice.


(Kristen Farmer) #6

My son Caden was diagnosed 3 weeks after he turned 2.  It has been 6 months and it has been a roller coaster.  He is always moody.  We are still trying to regulate sugars which have been in the 400-500 range.  Your son will adjust too.  Caden does great with his finger even puts the strip in his meter.  Shots vary on different days.  Some are good and some are bad.  He also is on novolog and lantus.  I think he has adjusted better then myself or my husband.   Good luck and I would love to talk sometime.


(paulg765) #7

Thank-you for the info! We have been to the joslin center. They are so great there. Well Aiden was diagnosed when I had noticed him excessively drinking/not eating and urinating, and he was grumpier than usual, and he was afraid of some pretty whacked out stuff. So I took him to his pediatrician and we agreed that we should check his glucose level and with him fasting for at least 8 hours his bg was 259, they drew blood found that his a1c was high and sent us to the joslin center immediately, There they gave us the rundown, education and information overload you could say, I was still in shock. Spending the day there we got him on lantus and got our meter and scripts. In denial over the weekend my wmotions were like a rollercoaster, I just couldnt figure out why this was happenening to my little baby who was fine just the other day. We went back the wed after and got some more info on his diet and how to calculate his novolog( more shots ) : ( I am dealing a little better now, it's just so surreal.

 I have'nt gotten any other books than the ones provided, but I will, there are so many. Come to find out his dads side of the fam has quite a few people with diabetes and on my side there are a few autoimmune disorders which all contribute a little something I guess. I'm finding it hard to manage everthing all at once and am learning to just let the little stuff go. : )

Thanks for the reassurance! Our family is working hard to donate as much as we can to the JDRF, we are particpating in the walk this year. I have read lots of things on the research they are doing now and it looks promising.

I would love to talk to someone who has some more insight on what we are dealing with, thanks a buch. ttyl

Hi Jo,

You may be a little bit shaken up which is to be expected, but you have done everything right so far.  I was a patient myself at the Joslin Center back in the 1970's when I attended graduate school in Boston.  My 25-year-old son, who was diagnosed with Type 1 at the age of 5, lives in Boston now and is also going to Joslin.  As a youngster, he went to the Joslin sleepaway camp for a Summer as well. 

The Joslin Center has long been world-renowned as one of the leading edge institutions providing top-notch quality diabetes care.  You've conquered step 1... you've found and are going to the best.  When I was first diagnosed I was perhaps informed incorrectly that managing my diabetes will be "just another thing I'll have to remember to do everyday, like brushing my teeth or combing my hair."  Well, I have to admit it is a bit more complicated and time consuming than that, although I do know some people (whose names I won't mention) who spend as much time in the bathroom doing their hair as I do managing my diabetes :)  But the point is,  for the most part you get used to the routine, do what you have to do, and get on with your life.

I'm not sure whether it is better to be diagnosed with Type 1 at the age of 17 like I was, or younger at the age of 2 1/2 like Aiden.  (Comments anyone?)  For Aiden, and it was for my son Max as well, he will probably never remember a life without diabetes.  He will probably adjust more naturally than you will.  There will be trying moments, but there are moments in any child's life.  If you carefully oversee his diabetes care, but in all other respects treat him as a normal child, everything will be fine... physically and emotionally.

Every time I see them together, I notice there seems to be a special emotional bond between my son Max and his mother.  Because I had been so much involved with my business career at the time,  Max's non-diabetic mother, my wife Sara, had more to do with his diabetes care and support than I did.  I believe that this fostered a certain attachment, intimacy and love between mother and son that you may not find in perfectly normal situations.  Is this perhaps the silver lining?  I believe it is, and you will share something with Aiden which will surely strengthen your love way into the future.

Put a smile on your face and he will smile back.  Make that commitment to "live" it together and perhaps you will begin to find the experience challenging, exciting, worthwhile and at times even enjoyable.

My phone number is 607-217-5421.  Call me anytime.

 

Stay well.

 

Paul


(Sugar-FreeInYYC) #8

Very nice message Paul, very insightful and supportive :)

As far as my own experiences went, I believe it is easier for the CHILD to be diagnosed at an early age.  However, I was a 16 year old girl who was mainly concerned with vanity and wanted to be beautiful and thin.  The mis-management of my diabetes made me lose weight and even though I was deathly sick for several years, it didn't seem to bother me and I lived in a dream world? 

I do see it in both ways though.  If a child is diagnosed early on in his life, it is easier for him because his parents are there to take care of him (not that my parents didn't try at my diagnosis) and the stress is then put onto the parents.  I wanted something to control when I was a teen, and my diagnosis I guess gave me the control over my life.  I was testing how far I could take my body before I did any real damage.  Not a good choice and I do NOT recommend it to anyone.

If your child does not know anything BUT his diabetes and cannot remember a time without it, then he will live his life thinking that life WITH diabetes is nothing but normal.

For this, I wish I was diagnosed as a child.  I was diagnosed 5 years ago last week, 3 of which I didn't consider myself a diabetic... I can honestly say I can vaguely remember not being diabetic.. but I have been dedicated to my health so intensely in the last little while that the time before this life has sort of faded, and I don't mind.  I was a wreckless teen and I much prefer my life now.

I wish you luck in raising your son as a T1 diabetic.  You will do a great job, and never forget we are here to support you in all your questions and concerns.

Also, don't be frightened by my post, it was my life and my struggle and I have overcome it to be healthy and proud to be alive!

Andrée


(JoConnolly) #9

Its the same here! He is so moody, and sometimes I just cant help but smile at him cuz I know it's just his little body all screwed up, his levels are all over the place, 80's to so high the meter wont even give me a number. I'm sure we will someday get it straightened out. He helps with his finger stick but fights when it comes time for his shots, poor little hunny see's me comin and starts to beg "no mommy, no mommy", what can you do. He likes to give rufus a shot too, thank goodness for that bear! After all is said and done he gets a big hug and kiss from mom, that makes it all right. : )

Got a question, does Caden sneak food when your not lookin? or did he? Aiden gets into everything looking for food sometimes, I have to lock it all up. Many times I have cried with him, while he was begging for something to eat after he has had a full meal.


(Sugar-FreeInYYC) #10

If he's having a low.. then he might having one of the symptoms - EXTREME hunger.  Watch out for this and Try as best you can to not let him eat everything.. his little body is telling him that he needs carbs to treat the low.  Unfortunately, if he DID eat everything, his BG would swing back the other way soon/very soon afterwards.  It is probably as hard for you to explain to him as it is for us to resist our urge to go to the kitchen instead of drinking juice.

It's a hard task to do.  You will get it.. it will of course be hard!

I wouldn't worry TOO much about his swinging BGs because that's normal when you're trying to figure things out.  Your endo is probably also figuring out what his tiny body needs as daily insulin.

Keep up the good work and keep your head up high.

:)


(kylie03mom) #11

Even when my daughter is high she feels hunger and it's so tough to say not right now... I always keep a supply of low carb foods on hand for these times... cheese (skim milk kind), or cheese sticks, veges like celery, cukes, baby grape tomatoes, even with pb or ranch dip still practically no carb and it's food when these kids think they NEED something.  We even did pb lollies -- just pb on a spoon - and what a treat.  And yeah I know some has fat.. but to get you through a tough moment once in a while, I'm sorry sometimes you have to do what you can to get through it.  They're already dealing with enough in my eyes, and my child's willing to eat celery, so I guess I'm lucky.


(Kristen Farmer) #12

Caden seems to be hungry constantly.  He eats more then an adult.  When he can't have anymore he gets so mad and cries too.  It makes me crazy.  I feel so bad for him.  I wish we could trade places.  He doesn't really sneak food because I have everything to where he can't get it.  Finding snacks that he will eat is a constant battle because Yes he is only 2. 


(robison767) #13

If blood glucose is running consistently high, he may be losing calories in his urine.  If the sugars are expelled in urine, they are not getting into the cells, and his body will be hungry. The advice posted about low-carb snacks is good.  We have also had success in balancing carbs with meats and broccoli for balanced meals.  For us, the blood glucose levels spike when eating high carb meals, such as pizza and breadsicks, for example.


(cschultz) #14

my daughter was diagnosed at 15 months.  She is now 10.  She was put on the pump at age 4, it was a life changing moment.  the nice thing about the pump is we carb count so my daughter can eat as much as she would like.  it makes it easier to just let them be kids.  We do push no carb things when she has high blood sugars. The best thing you can do is get involved in a support goup, and help JDRF find a cure for our chldren they are getting close.