I have T1, how many other T1's also have children with T1?


(kbuckleync) #1

I've been a T1 for 30 years, so I really don't remember what life was like without it.  But when I had my first (and last) child 2 years ago, my endo told me that I didn't have any greater chance of having a T1 than anyone else did.

But from everything that I'm reading on here it seems like lots of T1s also have children with T1.  So now, of course, I'm worried sick about it.  The thought of my son developing T1 just makes my stomach turn.  I think the guilt will just completely overwhelm me.

I'd love to hear from others who have children with it, and how you coped.  Did any doctors tell you that your chances were higher or lower?


(MaxG) #2

I have T1, and I am the child of another person with T1. In fact, my dad is on the site: http://juvenation.org/members/paulg765/default.aspx . :)

-Max


(ThePancreanator) #3

My doctor told me that the risk for a child of mine the future will be higher.  However, with that being said, I also have no family history (that I'm aware) of there being a T1 in my family.  I had this one teacher who was insensitive and quite honestly ignorant that kept telling me that I need to be careful because when I have a kid the child will have diabetes.   I think he was just exaggerating but the risk is greater.


(DDrumminMan) #4

I have/had two children.  One with and one without.  My son got it at age 5 and had it until he died in his sleep at age 14.  Diabetes related?  I don't know.  My daughter is now 20 and a senior in college.   I'm hoping she doesn't get it. 

From what I understand the odds are definitly higher but not way way way higher. 

Please don't worry about it.  You can do absolutely nothing about it.  Either he will or he won't.  Worrying will do nothing but provide more stress which we all know is bad for BS.

We also had a malamute (dog) that got it and we treated him and kept him alive and happy until he succimbed to luekemia at age 16!


(meme) #5

I have thought about this,will type1 be passed down when my daughter grows up and wants children.She will start looking for answers,and I don't know if the answer is out there.


(Anonymous) #6

[quote user="DDrumminMan"]

I have/had two children.  One with and one without.  My son got it at age 5 and had it until he died in his sleep at age 14.  Diabetes related?  I don't know.  My daughter is now 20 and a senior in college.   I'm hoping she doesn't get it. 

[/quote]

 

Oh my gosh, I'm so sorry, DDrumminMan... yikes, he was about my age when he passed, huh? I'm sorry.

 


(Monique H) #7

Our endo said it was unusual for there to be more than one person in any family with T1, although he had one family in his practice in which one of the parents and two children all had T1.  I think I met them yesterday in class.

Mo

 


(FreeHappyHolly) #8

I feel so much sorrow for you DDrumminMan.  I can't imagine what it would be like to lose a child.  You still HAVE two children...one is just waiting for you in Heaven! 


(FreeHappyHolly) #9

I was paranoid of this happening too and, well, it did.  My educator told me to just give random bg checks to my daughter to give me the piece of mind.  I was so worried about my first daugther (she'll be 10 this month!) getting it that I didn't really focus on my second daughter and she was one who got it.  For some reason I was thinking my first daughter was at a higher risk of getting it because I was diagnosed when I was pregnant with her.  I continue to give her random checks and she's fine.  There are some days were I refuse to give her a random check because I don't think I would be able to handle having two kids with t1 on that particular day!  She is still doing just fine.  My second daughter was diagnosed when she was two.  She's 6 now.  One piece of support/encouragement that my doctors and friends always told me that helped was this.....just think how lucky your child will be to have a mom who know's what it's like to have t1 to be there for them and to have the knowledge of how to care for them and have a true understanding of what they go through.  Having t1 along with your child is a special bond.  It's very hard to have to listen to their crys and frustrations.  You have to stay positive with them and say "we are so lucky that we only have t1...we could have something where we can't see, we can't hear, we can't taste, we can't smell we can't talk, something that will make use look different from everyone else but we don't".  She will start to smile and realize that we're pretty lucky to been dealt this disease vs. some other disease.  You'd be surpised at how tough of a mom you will become if you're son ever does get it.  Just think of all the parents who don't have a clue about the disease.  You are way ahead of the game!  It's hard to stay positive about  t1 but what other choise do we have?     


(kbuckleync) #10

Thanks....I know you're right.  Well, my head knows you're right.  I'm still praying with all my heart that I'll never have to cross that bridge.


(Sugar-FreeInYYC) #11

[quote user="Max"]

I have T1, and I am the child of another person with T1. In fact, my dad is on the site: http://juvenation.org/members/paulg765/default.aspx . :)

-Max

[/quote]

Awww, you are Paul's son!! sorry.. that seems lame but he is very special :)

As for the post..

Doctor said 4% chance of a woman passing on T1 to her child, a little higher if you are under the age of 25 when conceived? Not sure how that relates.. and 6% for men.

It does seem like there are alot on the site but I think it's because the people on this site are very involved within the diabetes community and if you HAVE a child who is T1 and you also have it.. it's more than likely you will have found this site.  There are TONS more people with T1 with no T1 children I assume out there.

It does also frighten me the thought of having a child and he/she possibly developping diabetes but like many more have said, we'd be the best to teach them.  Although on the other hand, we know how hard it is.

I will have a child or 2 or 3 and if they develop diabetes, we'll deal with it together and hope for a cure soon after!


(MaxG) #12

As the child of another type 1, I can tell you that there were many positive aspects to the situation over how it might've been if my dad were not a type 1. I was diagnosed when I was very young, and to the best I can recall (and my dad can add to this story), my parents caught it very early and I don't think I ever went into a "diabetic coma" or anything like that.

My control over my blood sugars has never been bad, and I attribute that to being educated by my dad from the very beginning on how one is supposed to manage their diabetes.

On the emotional side, seeing someone else living with and managing it made me believe that I could too. I certainly went through my "why me?" periods when I was younger, but acceptance is easier when you have a very close reminder that it isn't just you.

Dad, thoughts?


(Monique H) #13

I almost hate to say it, but some days I feel like our son would have an advantage if I or my husband had T1.  A parent with T1 is already an "expert", they've been through the ropes, they've gotten the education, they've pretty much figured it all out, and they kind of know how to dovetail care into day-to-day life.  Parents like us, who didn't even know the difference between T1 and T2 before our son got sick, I feel like every little mistake I make, our son pays for it.  And, believe me, there've been enough mistakes to keep me up at night.  My learning curve comes with an emotional cost. 

I keep thinking back to the family I met in class yesterday.  Dad (with T1), mom, and two boys (both with T1, one new dx).  They were just so calm, so matter-of-fact, so "we've got this handled", compared to every other parent in the room who was sitting on the edge of their seat, trying desperately to just get a handle on the basics.  The uncertainty part, the doubts about our own ability to care for our children, is the worst.

Sorry to spew my "stuff" when others are grappling with their own fears.  But, one thing we all have in common is the acknowledgement that living with T1, day in day out, makes us stronger.  I'm stronger than I thought I could be as a parent, and our son is stronger because of the intense fears he has had to overcome just to get through his daily testing and injections.  He's gone from a kid who had to be held down by three adults just to get his shots at his last checkup, to injecting himself five times a day without so much as a complaint.  It still breaks my heart that he has to go through this, but I have absolutely not doubts now that he's going to make it, and be stronger for it.

 


(paulg765) #14

My wife, Sara, and I had heard Max going to the bathroom many more times than usual during the night for a couple of nights in a row.  We both knew the symptoms of Type 1 all too well so when I arrived home from work after the second night, Sara suggested I take out my glucose meter and test Max's sugar.  When the meter read out around "400" we had no doubt that Max had Type 1.

So, as calmly as possible, we phoned Max's pediatrician, who upon hearing the story, referred us to an endocrinologist and made arrangements to have him admitted immediately that evening to the local hospital.  Max is correct in his above message that fortunately he never even came close to a diabetic coma and probably wasn't even walking around with an elevated blood sugar for more than a couple of days.

Looking back on that evening and trying to find anything even slightly humorous about it, I recall vividly that Max, being a 5-year-old child, did not want to go to the hospital (too much) and was very uncooperative.  So, Sara and I were forced to do what we had to do, and what most parents don't like to do... we told Max a little "white lie."  We told Max that for being such a big boy and letting us test his blood sugar, we wanted to take him to Toys 'R' Us (toy store) and buy him a toy.  (It worked!  He gladly got into the car.)

To minimize "the lie," we actually DID take Max to Toys 'R' Us that evening, and we even bought him whatever toy or toys he wanted.  This is what "guilt" frequently does to parents and we knew he'd be needing these toys for where WE KNEW we were headed next.  Our route home from the toy store was intentionally detoured by a trip to... guess?  The hospital.

Max, needless to say, wasn't to happy with us, his parents, about the "trick" and deception.  I believe he's forgiven us... yes Max??

 


(Anonymous) #15

Wait, am I getting here that Max is your son, Paul??


(paulg765) #16

Yes, Alyssa, you have it correct.  Max is my son.
I thought it would be easy to tell from out profile photos...
Not only do we look alike, but we're both very handsome!
Don't you agree, Alyssa?


(Anonymous) #17

Am I obligated to answer this, Paul?
Just teasing - yes, yes, Paul :D
Good to know. I never would have connected that on my own, but that's just my summer-brain :D


(Anonymous) #18

That's cool that you're both on here, though. Wish my parents would.


(kbuckleync) #19

Max, I just noticed that you live in Boston.  I grew up in the Boston area....lived there for all my life, except for the past 6 years (when I moved to NC).  Are you downtown, or in the burbs?


(BrianPQuinn) #20

I noticed the pictures were eerily close to the same, I just figured you had a little mini paul out there or you were logging with multiple personalities.