My daughter diagnosed with Diabetes Type 1

[Mary in NJ]

One week ago today, we received the devastating news that our daughter has Diabetes. It was shocking news, as no one in our family is diabetic. She was hospitalized for 3 days in order to start stablizing/lowering her blood sugars and for the whole array of diabetes education. Overwhelming.

 

People have asked what spurred our decision to go to the doctor. Large amount of unintended weight loss, constant thirst, always hungry, massive amounts of food intake, frequent urination, tired, and overall loss of energy.

 

She is an amazing girl and has been injecting her own insulin and checking her blood sugar.

 

We were put in touch with JDRF, and received a backpack filled with information. We are touched to see that a lot of research has been performed and that so much has been learned about diabetes. However, this is something she will live with for the rest of her life.

 

Tonight she was reading some of the information that was in the JDRF packet and learned that her life expectancy will be decreased by an average of 15 years. She broke down and cried. I cried.

 

Just wanted to ask for prayers. Hard days, sleepless nights, all with a 13 yo daughter who prays nightly for a cure.

[JenAL]

:grouphug: My baby sister (11 years old) was diagnosed at the age of 2.5. It was a very frightening experience for all of us.

[JudoMom]

One week ago today, we received the devastating news that our daughter has Diabetes. It was shocking news, as no one in our family is diabetic. She was hospitalized for 3 days in order to start stablizing/lowering her blood sugars and for the whole array of diabetes education. Overwhelming.

 

People have asked what spurred our decision to go to the doctor. Large amount of unintended weight loss, constant thirst, always hungry, massive amounts of food intake, frequent urination, tired, and overall loss of energy.

 

She is an amazing girl and has been injecting her own insulin and checking her blood sugar.

 

We were put in touch with JDRF, and received a backpack filled with information. We are touched to see that a lot of research has been performed and that so much has been learned about diabetes. However, this is something she will live with for the rest of her life.

 

Tonight she was reading some of the information that was in the JDRF packet and learned that her life expectancy will be decreased by an average of 15 years. She broke down and cried. I cried.

 

Just wanted to ask for prayers. Hard days, sleepless nights, all with a 13 yo daughter who prays nightly for a cure.

 

:grouphug::grouphug::grouphug: I'm so sorry.

 

My Dad is Type 1--he was dx at 19. He's now 61 and has had no complications.

 

I will pray for y'all as you adjust to your new normal.

[dancer67]

Praying for her. My SIL was diagnosed at 12, and she is now 29. She has an insulin pump(looks like a beeper) that makes her life SO much easier. For her, it is a way of life. Maybe you can look into getting her the pump? I know my SIL no longer has to give herself injections, and she does not have to worry about eating at certain times of the day. She just adjusts her insulin pump before she eats and she's done. She changes the catheter every few days I think, and it looked real easy to do. Looks easier then giving your self injections. Maybe something to ask about?

 

If she takes care of herself(like we all should anyways), I can bet she will live a long healthy life. And FTR, my SIL had three healthy children, vaginally, no problems or complications.

 

My Uncle also had diabetes and was dignosed in his teens. He lived into his late 70's and died from something unrelated to Diabetes.

 

:grouphug:to her.

[HollyDay]

We will pray for her and your family. It must be very difficult for her. Does the hope of new medications and techniques comfort her? I know it sounds "canned" to say that there are new discoveries all the time and new drugs that will help manage diabetes. But, it is true. Look how far we have come in the past 10 years! Imagine what options she could have in another 10 years. I'm not trying to be "susie sunshine", just wanting to offer encouragement.

[melmichigan]

Once you have adjusted, learned how to manage her sugars, and reach a comfort level, do ask about the pump. It is amazing, I wear a Medtronic pump and can't say enough about how it changed things for me. My mother was a brittle juvenile diabetic who died very young, she was on the forefront of research at the time and one of the first people in the country to use peritoneal dialysis. Things have changed trememdously and continue to change daily, please check the copyrights on the materials before your DD reads them, much is outdated. A juvenile support group is also something you might consider; teen years can be difficult for diabetics for many reasons unrelated to the disease itself. Sending prayers and many :grouphug: your way.

[Mothersweets]

I'm so sorry. My dd was diagnosed last April. It felt like the world had collapsed. Everyone kept telling me that we would feel "normal" again and I just couldn't imagine waking up in the morning and not feeling overwhelmed.

 

Fast forward to now and guess what? I wake up, she wakes up, we all wake up and we feel...normal!

 

It really will become a regular part of living. I joined an online group http://forums.childrenwithdiabetes.com/index.php Everyone there is VERY welcoming and helpful.

 

Here is a link to a book you might find helpful. After reading it I felt much better about my dd's ability to not have her diabetes rule her life.

http://www.amazon.com/Secrets-Longest-Diabetes-Marlowe-Library/dp/1600940188/ref=sr_1_3?ie=UTF8&s=books&qid=1255479414&sr=8-3

 

I hope some of this helps. :grouphug:

[Colleen]

I'm sorry, (((Mary))); I can only imagine how difficult it must be to process all of this. There's a really wonderful woman in our midst who posts as WTMCassandra. She recently embarked on the same journey as her daughter was diagnosed with diabetes. I want to encourage you to connect with her, as well as with others who can share their experiences.

 

Regarding the average decreased life span, I so hope you and your daughter will turn a blind eye to those statistics. They are just that: numbers ~ though of course when they personally affect you, it makes all the difference. As someone else noted, though, vast medical improvements can be made in your daughter's lifetime. And it may very well be that your daugther, with her illness, will take better care of herself than those who are allegedly healthy, resulting in an improved life in so many ways.

 

Best to you and your daughter, Mary.

[tammi]

Like some of the previous responses, I would highly reccommend an insulin pump. I would suggest looking into the different pumps. Do not just pick one and go with that one. I have used Medtronic and like that company very well. They work with you if the pump is having problems and all. I am now using Animas because it was cheaper and a refurbished one. (I do not have insurance.) Both companies are excelllent.

Tammi

[kdeno]

My 5 year old son was diagnosed and hospitalized a week ago. It is just plain hard. I am thankful that it is a manageable disease and that medicine has come so far. Handling all the misinformation is a job on its own.

 

Praying for your daughter,

 

Kariann

[Heather in Neverland]

:grouphug::grouphug::grouphug:

[vettechmomof2]

My daughter was diagnosed not long after her 7th birthday. She turned 10 this past August.

She is now on the Omnipod pump and uses a Dexcom 7 plus(a continous glucose monitoring system) and attends a summer camp with other children and counselers who have Type 1 Diabetes. All of these items together have made her life and mine so much easier to live with.

You will have bad times and crazy fluctuations, irritating comments from people and many other things happen but hang in there.

You should also check out children with diabetes forums if you feel the need for venting or input.

Take care.:grouphug:

[OrganicAnn]

I read an interesting article about 6 months ago about dogs that are trained to detect sudden drops in blood sugar levels. I think they are very expensive to get (more so than seeing eye dogs). It was suggested that young adults who may be living away from home for the first time or living alone (like college students) can really benefit from having one of these dogs. Though it could potentially benefit anyone with diabetes.

 

Anyway you might want to tuck that information away for future reference.

 

My niece was diagnosed at 3.

[readwithem]

 

It really will become a regular part of living. I joined an online group http://forums.childrenwithdiabetes.com/index.php Everyone there is VERY welcoming and helpful.

 

 

 

:iagree:

 

My family hasn't been affected by diabetes, but I've looked at this site and it seems warm, caring and welcoming. Very similar in look and feel to WTM. :grouphug:

[Gwen in VA]

My dh was diagnosed 19 years ago, at age 26. (Yes, it was type 1!) He has no complications.

 

My dd2 was diagnosed with t1 18 months ago at age 12.

 

I found the absoluel worst part of diabetes is the first month or two after diagnosis. When my dh was diagnosed, I was pregnant with #2 so I assumed the feeling of "my world has fallen apart" was due to hormones.

 

When dd2 was diagnosed, I lived through a repeat -- several weeks of that "my world has fallen apart" feeling. I couldn't imagine letting her go away from me for a minute.

 

Well, fast forward a year. She went on a mission trip (only three hours away) for a week last summer! And her diabetes hasn't stopped her at all -- she does all the activities she did before. Her diabetes has just forced her to become more organized.

 

As far as longevity goes -- as others said, the advances available today (great insulin regimens that use Lantus, the pump, continuous glucose monistoring systems, etc.) will help your dd enormously. When her doctor gives her permission, pursue getting a pump!

 

I will be praying for you -- the adjustment is hard. But I promise you that life will become "normal" again -- though it will be a "new" normal.

 

Feel free to PM me if you want an ear.

 

:grouphug: (Sorry it has to be only a virtual hug!)

[Jenny in Atl]

:grouphug:

 

My youngest was dx at 13 months. She is now 9 and doing great. Fi is also pumping, has been since she was three. I also second Children With Diabetes web site for support and info. There is also the Barbara Davis Center web site. They have great info online, including the "Pink Panther" bk, which is a lifesaver with a newly dx kid. Here is the link. http://www.uchsc.edu/misc/diabetes/books/ud11/ud11.html

 

Take on day at a time and breath...

[mommybee]

:grouphug:

 

My youngest was dx at 13 months. She is now 9 and doing great. Fi is also pumping, has been since she was three. I also second Children With Diabetes web site for support and info. There is also the Barbara Davis Center web site. They have great info online, including the "Pink Panther" bk, which is a lifesaver with a newly dx kid. Here is the link. http://www.uchsc.edu/misc/diabetes/books/ud11/ud11.html

 

Take on day at a time and breath...

 

I second the pink panther book, it was really helpful. My son was dx at 9 and just started pumping this year at 14. We love it!!

 

There are days when my son and I still yell "I hate diabetes", but most of the time we have very normal days and he is a very normal teenager.

 

Hang in there and just be patient because it's all so new but after awhile you won't feel so out of it.

:grouphug:

[Goldilocks]

:grouphug: My ds was diagnosed almost 2 years ago. I found the children with diabetes forums very helpful.

[jazzyfizzle]

I haven't read through the other posts yet, but wanted to send you my thoughts and tell you I can understand something of where you are.

I was diagnosed as a Type 1 during a DKA during my 3rd pregnancy (no family history or risk factors), and so also became insulin dependent for life. (I am listed as a type 1.5 since I was adult onset type 1).

Many people go through a series of emotions, similiar to a loss, since indeed it is a loss that you have to learn to live with, the loss of the fuction of an organ the body needs. Sometimes it can be the same emotions as other loss- shock, denial, anger, and later acceptance. (Just mentioned since I know I went through all these emotions and others I have known have also).

I shortly became a pumper. Eventually you will become acclimated and it will just be a part of her (and your) life.

I saw the sentence that mentioned the 'new normal' and that is exactly how I would describe it.

I would more than happy to help answer any questions you need bounced off folks.

 

:grouphug:

 

 

I scanned through the posts, and wanted to add that I also use a Medtronic pump and have been very, very happy with their customer service.

Edited October 14, 2009 by jazzyfizzle

[emeraldjoy]

I am so sorry for your family having to face this challenge.

May His peace and wisdom go before you in all that will be in the future.

emerald

[Mary in NJ]

Thank you all so much!!!

 

 

We are still numb about the diagnosis. I've had moments of feeling that this is so unfair, angry that it affects her for life, sad that her fingers hurt, happy when her blood sugar is lower than yesterday, thankful when she correctly counted carbs, divided by her ratio number, corrected for her sugars and can click her insulin pen to the right dosage. Proud of her when she so bravely injects insulin into her stomach and will say a quiet, "ouch." So many emotions in a week's time.

[tex-mex]

Once you have adjusted, learned how to manage her sugars, and reach a comfort level, do ask about the pump. It is amazing, I wear a Medtronic pump and can't say enough about how it changed things for me. My mother was a brittle juvenile diabetic who died very young, she was on the forefront of research at the time and one of the first people in the country to use peritoneal dialysis. Things have changed trememdously and continue to change daily, please check the copyrights on the materials before your DD reads them, much is outdated. A juvenile support group is also something you might consider; teen years can be difficult for diabetics for many reasons unrelated to the disease itself. Sending prayers and many :grouphug: your way.

 

:iagree: :grouphug::grouphug::grouphug:

[WTMCassandra]

Hugs to you. My daughter was diagnosed about six weeks ago, and she turned 13 this week. So we are walking a very similar path.

 

I'm the person Colleen was referring to in her post. I have been off the board for five days on a cross-country trip with said daughter--our first time flying since diagnosis. Whew. That was challenging.

 

I'm going to PM you--perhaps we can be a support for each other during this time.

[J'etudie]

Praying for your dd and your family as you adjust. Like a previous poster, dh was diagnosed with Type 1 at age 26...quite a shock. It was certainly a roller coaster for awhile. JDRF is a great organization; we participated in their walks for several years. Dh has been on a pump for 4 years, and it makes management so much easier.

 

Praying for a cure with you tonight. :grouphug:

[AnnetteB]

:grouphug: DD was dx 26 mos. ago and it was overwhelming at first. Now, it is the new normal. Others have encouraged you not to believe the shortened lifespan and I will too. Our daughters will probably be healthier than the rest of us since they will be making the most conscious choices about balancing carbs/excersize/insulin.

 

We keep a notebook to record her numbers, carbs, and note the suspected reasons that she is high or low. (Pizza and pasta are "carb bombs" for her) She was only 9 at dx and didn't read all the materials and books that we were sent home with, so she didn't realize the dangers of her new condition at first, but she was so happy and energized with the insulin on board! We've tried to make it a "team effort" so that she doesn't feel like she has to deal with this herself. She says the tummy shots hurt the most and gives her own injections in the thighs before breakfast and has me give her the pre-dinner injection in her upper arm most days. I am so glad when she says, "I didn't even feel it."

 

One hurdle that first fall/winter was making new traditions at Halloween, Thanksgiving & Christmas. Think music cds, ink pens, and socks in those Christmas stockings.

[Tullia]

Our son's doctor assured us that those life expectancy numbers are based on all diabetics, including those who don't monitor and manage blood sugar levels. If you pull out those who take a pro-active approach the life expectancy numbers look far better.

 

There have been so many advances in the four years since my son was diagnosed, and there are more to come. His philosophy is to accept reality, deal with the necessary stuff, and refuse to let it define his life. Other than the diabetes he's extremely fit and healthy.

 

Feel free to pm me anytime. :grouphug: I am willing to listen to rants; it's ok to feel blindsided!

[Mary in NJ]

Hugs to you. My daughter was diagnosed about six weeks ago, and she turned 13 this week. So we are walking a very similar path.

 

I'm the person Colleen was referring to in her post. I have been off the board for five days on a cross-country trip with said daughter--our first time flying since diagnosis. Whew. That was challenging.

 

I'm going to PM you--perhaps we can be a support for each other during this time.

 

Thanks so much! I PM'd you!!

[Mary in NJ]

Praying for your dd and your family as you adjust. Like a previous poster, dh was diagnosed with Type 1 at age 26...quite a shock. It was certainly a roller coaster for awhile. JDRF is a great organization; we participated in their walks for several years. Dh has been on a pump for 4 years, and it makes management so much easier.

 

Praying for a cure with you tonight. :grouphug:

 

My daughter's American Heritage Girls group has organized a team to walk in early November. My daughter is hoping to have gained enough energy back to join in the walk. What a great way to show my daughter that they (AGH girls) support her! Amazing.

[Mary in NJ]

:grouphug:Our daughters will probably be healthier than the rest of us since they will be making the most conscious choices about balancing carbs/excersize/insulin.

 

Thank you for these encouraging words. Just what I needed to hear!

[Mary in NJ]

Praying for a cure with you tonight. :grouphug:

 

 

I do believe a cure will be in my daughter's lifetime!

[Mary in NJ]

Thank you all for the infomation about pumps. We did meet with the diabetes educator yesterday. All the pumps were laid out and we got to pick up each one and ask questions. The one we really liked tested glucose and administered insulin.

 

Well, I'm back to bed. Finally sleepy enough to get some rest.

[EthiopianFood]

Please remember that many people don't take care of their diabetes. This surely must contribute to a shortened lifespan. Those statistics don't apply to your daughter if she takes care of herself! Also know that AIDS used to be a death sentence. Today, we have drugs that make it possible for people to live just as long as they otherwise would have!

[chickenpatty]

(((hugs))) My 10 yr old dd was diagnosed in February of 2008. I remember feeling totally blindsided. It is so tough, especially in the beginning when there is so much to learn.

 

Praying for a cure, too!