Life Changes in a split second!

Bluehoon

I would just like to let the Pearl Jam community know that my 4year old Daughter has just been diagnosed with Diabetes 1 on 6/10/2011. If anyone has any experience with this disease any information would be great. She has to have 4 finger pricks daily and 4 Insulin shots daily. We just got home from the hospital today after being there from 2:30pm est time on Friday until 12pm today. A lot of information has been thrown at us in a short period of time.Ava is a tough little girl. She has been taking this a lot better than me. I cry ever time I have to give her the Insulin shot, and she tells me everything will be ok. I know we have a long road ahead of us and maybe we can't beat Diabetes, but it sure has hell won't beat us.

Thanks Ten Club Community for always being there for our Family
Kevin Wright

DS1119

I don't have any experience with diabetes but I do know it's manageable and medicine is always moving forward. Good luck to you and your daughter.

Better Dan

Bluehoon wrote:

I would just like to let the Pearl Jam community know that my 4year old Daughter has just been diagnosed with Diabetes 1 on 6/10/2011. If anyone has any experience with this disease any information would be great. She has to have 4 finger pricks daily and 4 Insulin shots daily. We just got home from the hospital today after being there from 2:30pm est time on Friday until 12pm today. A lot of information has been thrown at us in a short period of time.Ava is a tough little girl. She has been taking this a lot better than me. I cry ever time I have to give her the Insulin shot, and she tells me everything will be ok. I know we have a long road ahead of us and maybe we can't beat Diabetes, but it sure has hell won't beat us.

Thanks Ten Club Community for always being there for our Family
Kevin Wright

Hi Kevin,

Sorry to hear about your daughter's illness. Diabetes runs in both my and my wife's family and we know that it can be very hard but it can also be manageable. We haven't known anyone to have it at such a young age, however. The important thing is for you and your wife to be there and strong for your daughter. Your daughter's doctors will have the best information on ways to manage the disease. I like your comment that Diabetes will not beat you and that is just the attitide you need to have. I know nothing we say can really help what you're feeling right now (I have an 18 month old and can't imagine what you are going through), but if there's anything we can do to help for if you just need someone to chat iwth feel free to drop me a PM.

I'll keep your daughter and the rest of your family in my thoughts and prayers.

Best of luck!
Daniel

FrankY59

Hey, Im not a pediatrician but I am an internist...so what I do know about diabetes is that in the adult population. Just know ONE thing...she can live a NORMAL life and live JUST AS LONG as someone without diabetes. But she just has to learn to ALWAYS take care of herself. Just set a good path for her.

Feel free to ask any medical questions you'd like.

YourDirtisMyfood

Thinking of you and your daughter.

jason_94

My families thoughts and prayers go out to you and your family.

Jason

blondieblue227

you are a good dad for reaching out for help. it touches my heart.

mfc2006

thinking of you, your daughter & your family. best wishes!
Matt

Go Beavers

Bluehoon wrote:

I would just like to let the Pearl Jam community know that my 4year old Daughter has just been diagnosed with Diabetes 1 on 6/10/2011. If anyone has any experience with this disease any information would be great. She has to have 4 finger pricks daily and 4 Insulin shots daily. We just got home from the hospital today after being there from 2:30pm est time on Friday until 12pm today. A lot of information has been thrown at us in a short period of time.Ava is a tough little girl. She has been taking this a lot better than me. I cry ever time I have to give her the Insulin shot, and she tells me everything will be ok. I know we have a long road ahead of us and maybe we can't beat Diabetes, but it sure has hell won't beat us.

Thanks Ten Club Community for always being there for our Family
Kevin Wright

You may have seen this page regarding the camps. They seem like a good experience for kids:

http://www.diabetes.org/living-with-diabetes/parents-and-kids/ada-camps/

I've known a couple people with juvenile diabetes (now adults). They just had to stay on top of their insulin and monitoring, and otherwise did well (played sports, etc).

And because I love cycling, here's a link to a professional cycling team where most of the riders are Type 1:

http://teamtype1.org/about/default.htm

I hope all goes well for your family.

vant0037

My cousin was diagnosed with Diabetes 1 young (I want to say like 7 or 8) and she's stayed on top of it (with lots of family support, of course) and just graduated college. She's healthy, she's happy, she's normal.

Your daughter can do this, but just as importantly, your family can do this. Hang in there!

Jeremys Spoken

Bluehoon, check your Private messages up top. Gave you a personal email, and number to contact.

2-feign-reluctance

Type 1 here since age 5. Feel free to PM me. I'm also a licensed therapist & know both sides of the coin with this condition.

Katyz

First of all, I am so sorry you have all had the wind knocked out of you...your post title says it all....

As a teacher, I have taught young children with diabetes and they are happy, bright, successful children. They do have to deal with things many don't have to deal with and it is harder on the parents to watch them go though that. BUT..they do really well...better than us parents, and they learn to cope and move forward.

Diet, lifestyle and insulin will become a part of your lives. I encourage you to continue doing what you did today...reach out to people....find information..and get help whenever you can.

My child does not have diabetes, but we have learned a new type of 'normal' which includes days when I get really pissed off with what is going on. Don't feel you can't do that either....you are entitled.

You, your family, and your daughter will get though this. Stay strong. xxx

PJBanker

I was diagnosed at age 8, over 25 years ago now. It is a lifelong and life changing disease, but the technology available today is great. I would highly encourage you to look into getting an insulin pump as well as a continous glucose monitor. I was very hesitant about both of these, but it really does make life with diabetes easier. Medtronic makes a great pump, but the monitor I had some issues with. I have since switched to the dexcom monitor and it works, much, much better. I'm not sure how early into diagnosis an endocronologist would be ok with putting your daughter on a pump though.

Oh and making your daughter's diet the family diet makes a world of difference too, my parents got rid of all the sugar stuff in the house right away, and would offer money for my candy on halloween.

Best of luck to you and your family, feel free to pm or post anymore questions.

Katyz

Just thought about the finger prick and the shots.....can your daughter use EMLA cream? It numbs the area before sticking it. It has got my son through so much. We have even used it as psychological support when we know we didn't have it on long enough to really numb his finger or chest. Check with a doctor first, of course.
Katy xxx

PJFanDad

Kevin, my thoughts are with you and your family...I can relate...my 5 year-old daughter was diagnosed with Leukemia in January, after taking her to the pediatrician for a nagging cough. She is doing great now, but still 2 more years of treatment.

I am not familiar with the treatment plan you will follow, but stay strong, you and your family will get through this. As you know, it is unbelievably difficult to watch your children go through pain...especially when they are not old enough to fully understand. I wish I had some great words of wisdom...you do not deserve this, she does not deserve this and it is not a matter of things even-ing out over time. Take stock of all of the positives in your life and how going through this will open up some many doors in your life and introduce you to people and activities you never thought. You will find incredible strength and resolve you never thought you had. What is truly important will remain crystal clear. Take a fresh look at all of the little things you used to take for granted and enjoy the moments as best you can. Treasure everything, the way she smiles, the way she hugs you, the way she says "Daddy", the way she giggles.

Last, but not least...when you have a few minutes to yourself, crank up some PJ and work out some emotion and truly enjoy the release and the new meaning you will find in your favorite Pearl Jam songs. Sending thoughts and prayers and positive vibes your way.

Bluehoon

I want to Thank everyone for there support and as a parent it kills me to see my little girl go through such a life changing experience. She is strong though. We have our first apt today at 130pm at the Joslin Diabetes Center. She did great this morning taking the finger prick and shot, it still hurts me, cause when she says the shot doesnt hurt but the finger prick does I believe her. I cry more than her cause I know she has a long road ahead of her, but everything will work out in the end. And I will reach out to some of you that have diabetes type 1 for not only questions on your life style and even questions on how your parents deal with it on a daily basis.
I will keep everyone updated on her progress.
Thank You for all the support
Kevin Wright

bigbiggzy

I'm genuinely sorry to hear of your family's recent news. I come from a long line of diabetics. I feel your pain....You and your family are in my thoughts and prayers.

dr0ptheleash

So sorry to hear this. Stay strong, thinking of you and the little one. It will be ok!

PJ_Lukin

My nephew has had Juvenile Diabetes as long as I can remember. He is now entering his 3rd year of college and has had a "normal" life to date, as in Diabetes has not impacted his day to day activities. I have designated my payroll charitable deduction to go to http://www.jdrf.org/ for over 25 years. They have been a great resource for my brother and his family. Good Luck.

Bluehoon

PJ_Lukin wrote:

My nephew has had Juvenile Diabetes as long as I can remember. He is now entering his 3rd year of college and has had a "normal" life to date, as in Diabetes has not impacted his day to day activities. I have designated my payroll charitable deduction to go to http://www.jdrf.org/ for over 25 years. They have been a great resource for my brother and his family. Good Luck.

One of my friends works for JDRF in Syracuse NY and is stopping by tonight to give me a welcome bag, and said she would be able to answer any question we have.

I Love you Ten Club Family.
Thanks
Kevin Wright

camaros

be strong dude... sounds like you have a gem of a daughter

Suziemay

Stay strong, thoughts and prayers for your daughter. Bret Michaels is a Type 1 diabetic: http://www.diabetes.org/news-research/n ... haels.html

Didn't stop him from doing, well, anything

dwhite76

my daughter was diagnosed when she was 4. She is turning 14 in 12 days. I know a lot about this disease and would love to help in any way possible.

Your daughter is going to go through what they call a "Honey Moon stage" Which means her pancreas will still create its own insulin at times.

Trust me I know these stage is the hardest. But hang in there it will get better. When she is a little bit olde and has had the disease under control as much as possible, Your daughter can get on an insulin pump.

The pump gives insulin through out the whole day. You only have to dial up (add insulin) when you eat. But there will be no more needles.

Ask your doctor to write a prescription for as many test strips as possible. Because you will go through them like crazy in the beginning.

Remember, You can NEVER test enough

Please contact me. Me and my wife are experts now. Good luck

dwhite76

DS1119 wrote:

I don't have any experience with diabetes but I do know it's manageable and medicine is always moving forward. Good luck to you and your daughter.

Trust me manageable to a 4 year old just dont exist. It does get better but as a parent and thinking to the future if some catastrophe happens and we loose computers or the ability to get our hands on insulin. That is never manageable.

I know you mean well in your post and Im not starting a debate but untill you are going threw it the word manageable takes on new meaning.

dwhite76

Bluehoon wrote:

She did great this morning taking the finger prick and shot, it still hurts me, cause when she says the shot doesnt hurt but the finger prick does I believe her.
Thank You for all the support
Kevin Wright

Kevin ask your diabetes doctor to give you a "Free Style Meter" This way she can test on her arm and wont need to test her finger. It hurts a ton less. Ask the person that will be stopping by and she will confirm and help you with this.

Most doctors office will give you for free as many meters as you need. If you need any extra because your doctor wont just let me know what one you use and Im sure I can send you another meter. We have a bunch of different brands.

SH

I agree - test, test, test. It's vital to know where her blood glucose is at given how active kids at that age are. Testing rarely hurts for me. Practice on yourself if you can. I know that test strips are expensive but it's good to know what it feels like. Do the same think with the insulin needle (minus the insulin of course!). I still stab my husband on occasion

Planning is key. I look at how my sister has to handle taking her peanut allergy 2 year old out of the house and realize that it's very similar for me. I have to always know when, where and what I will eat. It can be frustrating but you get used to it.

I'm a Type 1.5 (autoimmune) and fully recommend a pump when she's more stable. Every version is improving drastically and you can now get a pump integrated with a CGMS (Continuous Glucose Monitoring System).

You will be learning at warp speed over the coming months. Keep doing what you're doing, reach out. There are a lot of resources out there and some great messages boards.

PilateOfTheStorm

i'm sorry to hear this, my thoughts go out to your daughter and you and your family.
i have two friends as well as some relatives with diabetes, and while it does hand them some rough times they get through it and live happy lives, just like everyone else. and it's because of the positive attitude, the great attitude that you have too, that made them strong enough to beat diabetes and stop it from taking control.


wishing you strength, sending lots of good vibes and thoughts to your family and your daughter

Katyz

Another thought...which you probably have had already....make sure all involved in her care, including school knows all about this. The school nurse should be given full documentation from the doctor and all teachers who have responsibility for her MUST be made a ware of the situation. I know this is ALL you are thinking about now, but schools have so many children, you must advocate for them and make sure all is being taken care of there. We had the Child Life team come in from the hospital when my son started back at school, but we had to make sure everything was carried out properly. It wan't alway the case.
Sorry to post such a 'back to basics' post, but sometimes parents don't realize when they are caught in the middle of this whole new world that this stuff has to be done. I'd rather state what you already know than not say it and you not know...you know what I mean.

Katy xxx

dwhite76

Katyz wrote:

Another thought...which you probably have had already....make sure all involved in her care, including school knows all about this. The school nurse should be given full documentation from the doctor and all teachers who have responsibility for her MUST be made a ware of the situation. I know this is ALL you are thinking about now, but schools have so many children, you must advocate for them and make sure all is being taken care of there. We had the Child Life team come in from the hospital when my son started back at school, but we had to make sure everything was carried out properly. It wan't alway the case.
Sorry to post such a 'back to basics' post, but sometimes parents don't realize when they are caught in the middle of this whole new world that this stuff has to be done. I'd rather state what you already know than not say it and you not know...you know what I mean.

Katy xxx

Yes Great point. The schools will not touch your daughter unless you have the doctor sign and fax every step of the care. Meaning she will have to go to the nurse every 2-4 hours and before and after lunch to be tested. Some nurses are great and will come down to the class if its permitted but not usually.

Plus stay on the nurse. A lot of them have no idea how to deal with diabetes and are not on top of their game. So make sure to stay on top of them.

Loulou

Your daughter sounds like a little trooper. What a brave little girl!