Three generations of Type 1 and overwhelmed


(Lisa Y.) #1

I am 44 years old and diagnosed at 28 . My youngest daughter Molly, was dx"d at 10 years old in October of 2004. Molly has not adjusted well and doesn't want to consider the pump at this time. I sometimes think her age at onset has made it difficult or maybe having a mom with Type 1 is hard. The latest hurdle, our 11 month old grandson Austin, started showing symptoms and was also dx'd with Type 1 2 weeks ago. I am just devestated. He cant even talk yet. My daughter and her husband are remarkable and learning everything they can. Any other families with this situation?


(emerie slattery) #2

Lisa

You are not alone. I am not a diabetic. There is no history in my family. My oldest daughter was diagnosed  at fifteen  in may  of 2008.   My daughter is now 16 her a1c  is in the  10.5 range- consistently. she refuses to check her blood sugar or take her insulin frequently.  I actually find myself wishing she had been  diagnosed when she was a young child. I would have had other issue to deal with but i would have been able to set up a routine and schedule that she would have then accepted as second nature.

 

I pray for a cure. I  would give anything for one. Until then I watch my daughter destroy her body.  It is awful that a young child or baby would get such an awful disease but you have an opportunity.  Your grandson will never know different. You can set up behaviors that will last until a cure is found.  He may have to endure a few injections and his fingertips may get calloused. God willing  his body will be intact and fully functioning when that cure is found. I truly believe with all my heart and head that a  cure is coming.  Science, specifically nanotechnology and stem cells will give use answers that will eventually lead to a cure. Its  only a matter of time. Until then employ a great endocrinologist, read tons and stay on top of it.  Dont  lose hope. Give  your grandson all the best.  teach him what he will need to know. Hold him and love him when he cries.   kiss his booboos when he has them.  I think you are blessed you have a beautiful baby grandson. Who can live a full wonderful life. He can grow up go to school,  play sports, have a girlfriend and  find love. He  have a wondeful  life.  And eventually be cured.

Emerie


(Ardy) #3

Emerie,

My heart goes out to you and your daughter.  My son was diagnosed at the age of 11 and is now 39 years old, so we have been “doing this” for a very long time.  I just want to say please don’t get discouraged, your daughter isn’t quite 1 year into this so don’t give up on her. These next couple of years will be the hardest for her, bad enough facing the challenges of just being a teenager let alone type 1 on top of it.

 

As you told Lisa, don’t lose hope, just continue to love and support her and be there when she needs you…it will happen.

Ardy


(Lisa Y.) #4

Thanks for the encouarement!!! I also believe there is a cure in the near future. Our family is set up to participate in the "Walk For A Cure " in our area. Something we can do to support our little Austin. I am glad to talk to someone else with a teenager that wants to ignore their condition.


(red) #5

Lisa,

We belong to the unfortunate club of multi-generational diabetes families. My wife's maternal grandfather was diagnosed with Type 1 the year insulin was "discovered." Her dad has it, her brother, and our daugther. Two years ago she was diagnosed with type-1 at the age of 42. Go figure. She was wracked with guilt about passing this on to our child, but her dad had the best insight. No one asked for their genes. You get what you're dealt and you have no control over passing it on to your kids.

We've used diabetes as a common rally point for our entire family. We're not just doing it for Cassie, we're doing it for Papa, mom and for you. It can be a common bond of understanding when someone is having a tough time coping with the disease ortmanaging daily bloodsugars. It's somewhat a confort to have someone close who truly understands.

Keep up the good fight!


(4Knicko) #6

My family is no exception. My mother in-law has has been diabetic half her life. Two of my brothers in-law have type 2 and one has type1 since he was 16. Now, he's almost 50. My sister in-law was diagnosed with type 2 two years ago, and then my 7 y/o son a year ago with type 1. My husband feels really bad having to pass on a diabetic gene to my son and him being diabetic free. But there's really no one to blame. I stop myself from asking "why" since diabetes has brought us even more closer as a family.We cling to one another now and enjoys life as a clan of diabetics. My entire family is looking forward to this years "walk to cure" and will never lose hope that one day they will find a cure. Till then, life must go on!


(emerie slattery) #7

http://www.reuters.com/article/healthNews/idUSTRE5246GM20090305

I read this aticle and thought  this is where it begins. I know this is not new information but every time research is  done we come  closer. This is may not be the answer for a cure but if they can find a vaccine, well Id rejoice with that as well.


(car1olyn) #8

Hi Lisa. I feel for you and your family! My father-in-law, sister-in-law, and both of my daughteres have type 1. My kids are young and both on the insulin pumps. I worry for them since my FIL and SIL don't really take such great care of their diabetes. My FIL (currently taking Lantis only!) has some complications. I don't want my kids to see what diabetes can lead to, since they are so young (7 and 5). We always tell them we have to take care of the diabetes, but haven't covered the long-term issues, they are too young.

Maybe Molly would want to go to diabetes summer camp if you have one in your area? That way she would be able to see how other kids are managing it? We have a pocket of it in our town, so when another kid is diagnosed (so far we have around 12 kids in this very small town), the other kids with diabetes and their families are very supportive and it makes the kids with diabetes not feel so different. So meeting other kids could maybe help for Molly too...


(Tracey B.) #9

Hi Emerie, Both my husband (dx 13) and my daughter (dx 10) now 13 have Type 1.  I have spoken to one mom who had a toddler diagnosed and a teenager.  I had commented how hard it must be to have such a young child diagnosed and she said actually it was easier for the toddler to accept for the same reasons others here have mentioned - they really don't know any different way of life.  For my daughter I am thankful she was 10 because she already had many interests and passions (hockey, soccer, basketball) that she has continued to play.  I think that if she were diabetic at a really young age we might have steered her (meaning well . . .) in other directions.

My husband diagnosed at 13 certainly had a few teenage years of being in denial and abusing his body.  He is now 42 and has AIC in the 5's.  His endo says that if he were to hand over his body to medical students they could probably not tell he was diabetic.  He has had no complications from diabetes so far (30 years now) and has not always treated his body as he should have.  I guess what I'm trying to say is there is hope and even though at the moment your daughter may not be taking very good care of herself hang in there.  Diabetic camp might be a good avenue for her too.  Take Care.


(emerie slattery) #10

Tracey

I would be very content to see my daughter with a 5. I hope that day is coming for her.  Its nice to hear of a success story, thank you.


(buff) #11

Emerie-

i can relate to where you are with your daughter. my son was diagnosed at 13 and is now almost 17. he goes through spurts of being compliant but then his A1C has hovered around 10. Teen years are difficult enough with the added pressure of type 1.

I have become active in our local JDRF chapter because a cure or continued improved treatments are my son's and everyone elses lifeline. so much has change in the last ten years so let's hope the next ten provide the cure!

MEF

 


(Lesia) #12

Hi Lisa,

  I am 45 diagnosed type 1 at 12 1/2.  We definitely have a genetic link in our family.  My father was diagnosed at age 12 and unfortunately my youngest daughter was diagnosed 2/08 at the same age.  It devastated me.  She is adjusting well but we are in the same boat.  At this time she doesn't want to feel different from the other kids and doesn't want a pump.  I'm hoping she changes her mind.  I do believe that when a child is diagnosed at a younger age the impact may be alittle less since they do not remember life without it.  Our children do remember life without diabetes.

Teen years are hard enough to go through without having to deal with this!  I remember as a teen going through ups and downs.  Thankfully I have lived 33 years with diabetes and have no complications.  When I was diagnosed we only had urine test to go by so no telling what my blood sugar was.  I thank God everyday for the advancements they have made and hope a cure is in the near future.  Hang in there and know that you are not alone.

Lesia


(emerie slattery) #13

Honestly, I find I am compelled to sneak into her room in the middle of the night and check her sugar. She thinks its sketchy but I need to know shes safe. About 80 0r 90% of the time her blood sugars below 60 or over 400. I think she is finally just accepting that we both sleep better when I know her sugar. 


(peteandjulesmom) #14

I am a mom of a 5.5 yo who was dx exactly 1 year ago. Last year was a tough year, and now that we are accostomed to this new routine in our lives, we feel very lucky to have been dx in the age of insulin--I was reading a book and it mentioned that before the discovey of insulin--parents just watched their children literally starve to death--Oh-- how glad I am that we can give him insulin!!!   I just cannot imagine the anguish we would feel if we did not have it. But, that being said--We must now strive for a cure because these children stlll do suffer the punishment of having to take needles and fingersticks constantly and be ever so careful and vigilant about their diets and lifestyles(unlike other children--who do not have to worry about that stuff)


(HannahsMom) #15

My daughters story isn't like any of the stories I have read here, however, she did reluctantly decide to get the pump and there hasn't been a day thats gone by since then, that I haven't thanked God for that device :)

If you will go and read her story here on this site/group, you'll know why the pump was so medically necessary, and perhaps you can have your daughter read it as well. Maybe she will be more apt. to changing her mind?? It couldn't hurt :)

We are a little more than a year in to this illness/disease and we're both like little sponges trying to receive and retain any and all information about it. The moment you THINK you know what's best, or you know it all, something else happens and there is yet again, more to learn. That's the frusterating part. But, this site has been truely a God sent for me as well as for my daughter.

I really feel like a cure is just beyond the horizon, until it surfaces, I have this site!! :)

 


(emerie slattery) #16

Carolyn

I cant even imagine what it would be like to watch my child waste away. There is no doubt that if the person diagnosed utilizes whats available to manage this disease, they can remain healthy and grow up normal. My daughter is blessed in that she has everything at her disposal.  My daughter is foolish because she thinks if she uses these things it makes her a freak. If she had been diagnosed at a young age she would never be in this situation but she wasn't, she was diagnosed at 15. She knows the ill effect this disease can have on her but she cant reconcile the possiblity that these damages will be hers in 20 years.

She refuses the pump. She refuses to check her blood sugars regularly. She refuses to take insulin properly. The doctors wont admit her because she's not in DKA. Shes not passing out. She gets HI (over 600)readings on her glucometer at least once daily and lo (under 20) readings every other day. Thats if she checks. She'll tell us shes checking, make up numbers and when I check the gluometer she hadn't check in days.  considering she needs those numbers to effectively manage her blood sugars with insulin. you can see the issue. I am still watching my daughter slowly damage her self. If she doesnt wisen up i will be watching her waste away in a more insipid way as an adult. My best bet is for  a cure becuase my daughter is not rising to the challenge. I finally had her see a psychiatrist they put her on prozac. shes alittle better but remains non-compliant. At least on the prozac she isnt fighting me and screaming at me constantly. Shes angry depressed and a non-compliant diabetic. 

I cant tell you how lucky you re to be in the sitution your in. I hope you keep up with your daughters training and she continues to follow. She is young and moldable. She probably will never remember life without insulin or checking her blood sugars. It will be second nature to her.

good luck

Em


(Lisa Y.) #17

Carolyn,   As a 44 year old with Type 1 and a 14 year old daughter and 14 month old grandson, both also Type 1 some days it seems like every aspect of our lives is about diabetes.I am also encouraged about a cure being in our future. We decided as a family to join the JDRF Walk after our grandson "Austin was diagnosed at 11 months on Feb. 13th. It was such a rewarding experience for us. We had to work hard, but people were so generous and inspiring. Our group "Austin's Gang" raised $10,700.00 for a cure, we also had 40 walkers, no corp. sponors, just people wanting to help. Icing on the cake was the awareness we brought to people who knew so little about Type 1 diabetes. We are already making plans for next year, we have a big goal to reach. I did not tell all of this for a pat on the back because I received more than I gave. Is your 5 year old on the pump? Doctors are wanting to start Austin next month and I have mixed feelings. His parents are great and doing every thing right but his BS is still all over the place.                                            Lisa


(Lisa Y.) #18

Emerie, my daughter is 15 and at her last doctor appt. we had to take a form for the doctor to sign for her to take drivers ed. Her a1c is 9.2 and they won't sign until her numbers are better. I didn't protest because it is some leverage for her to do better. Is that something you could check into in your state?          Lisa