Parents with young children with diabetes - new to the group


(Debbiefran) #1

My five year old daughter was recently diagnosed with type one diabetes in September 2008... She is still in her honeymoon phase but i am sure when it is over she will need more aggressive insulin treatment to manage her levels.. For right now she is on NPH and it seems to be controling her levels pretty well...  Everything is still new to me and alittle overwhelming at times...  I would love to correspond with other parents who have more experience with the care and treatment of there children's diabetes...  I am so glad that there is this message board to help others get the advice and support they need...

 

Thanks - Debbie


(Lali) #2

Hi Debbie,

My Son was diagnosed when he was turning 10 years old, he is now 17, please feel free to ask me anything (maybe I can be of help) or just vent. We have gone through many things, ups and downs, summer camps, driving and now college/university search bringing us a whole new array of questions and learning experiences every time but there is always someone who can relate and willing to share their experiences thus helping us go through them easily.

Regards,

Lali.


(ChrisMom) #3

My 9-year-old daughter was diagnosed about 3 weeks ago -- feels like a lifetime in some ways. I'm really curious to understand more about the honeymoon phase. Just when we started feeling like we understood what was going on, she started having multiple treatable lows each day. Her doctor said her pancreas is producing some insulin and dropped her lantus down to 4 units. I hate the thought of trying to figure out new patterns all over again and feel like what we're doing now is pointless -- we've added in 3 snacks a day without insulin and have been trying to pay attention to how exercise affects her -- she plays lots of sports. Is all that for nothing? I'm guessing there will be lots of adjusting as her body grows and changes (and her attitude) -- just frustrating to hear about this honeymoon phase... thoughts? How long will it last?


(Lali) #4

Patience, every person reacts differently, I know some times having a kid with juvenile diabetes is extremely frustrating but keep in mind that everything you do is worth it even if you do not feel like it is, there are many changes coming (puberty and hormones) driving and college life and specially technology. Remember change is growth and Maya will be alright. Have patience and take care of your self too (sanity).

Lali.


(Debbiefran) #5

Hi Chris,

Wow your daughter was diagnosed three weeks ago...  That must have been a shock for you...  I felt like my whole world had completly changed...

How did you find out that Maya had diabetes? Did she stay in the hospital when she was first diagnosed. ...  

Brooke is still in the honeymoon phase and she has had several lows...  She is on 2-3 units of the nph one shot in the morning...  I am having a hard time getting her numbers within normal range...  It depends on what she eats and how much she is eating...  I try to give her the same amount of carbs per meal and snack...  sometimes that doesn't always keep her sugars under control...  She seems to have more lows then highs..  How often do you check Maya?  The more often you check the easier it is to treat the lows...  

Exercise plays a large role in lows...  I know that when Brooke is more active it is harder to keep her sugars up... 

Please feel free to ask any questions.....

Regards - Debbie


(Debbiefran) #6

Hi Lali,

Thanks for your support...  I am sure that i will have many questions to ask you as time goes on..  It really helps to talk to other moms with children with diabetes...  What type of regiment is he on and how is that working for you...

Talk to you later...

Debbie


(ChrisMom) #7

Yes -- I feel like my world has changed a LOT!! Her attitude is pretty amazing most of the time and she has already started giving her own injections with the pens we switched over to last week. I have no idea how she does it. Mostly, I feel like I have a harder time with this than she does and I find myself feeling guilty for being so emotional about it when she's doing so great and being so brave. Anyway...

No hospital stay -- just noticed the symptoms (which were glaringly obvious) and got her in to get checked. Our guts were right. She was drinking a ton, peeing a ton, eating like a horse, totally grouchy, and to top it all off, had lost an incredible amount of weight. It seemed to happen kind of gradually, but I had a knot in my stomach about it for about 3 weeks. Her level was 389 when we took her in. They gave her a shot of humalog and a shot of lantis and sent us home for the night. We went back the next morning for education and Maya went back to school the day after that. CRAZY!!!

We have a fantastic pediatric endocrinologist and our diabetes educator is pretty good. She does an insulin to carb ratio meal plan. She had one low at school today -- but had 4 on Friday. Her lantis has come down from 14 units that first night to 4 now that she is honeymooning. Her highs are much better under control, but I definitely worry about the lows... and when to actually call the doc or not...

We're hanging in there. I'm learning a lot -- mostly about what a great kid I have! Her sister has been pretty great about it too -- we had a No Candy Easter -- not easy for a 12-year-old!

:) Chris


(Lali) #8

Hi Debbie,

My son uses an insulin pump, he is an athlete so lots of exercise, a lantus shot in the morning, humalog in the pump and counting carbs is what he does to keep his A1C in range. He is now 17 but was diagnosed a bit before turning 10, at that time we started with syringes then insulin pens and now the pump but within a year when he goes off to College, I would like for him to be using the Continuous glucose monitor device because it has an alarm that goes off when they are going low (very helpful specially when they are asleep) so that he can wake up and take care of his lows thus avoiding an emergency.

When my son was diagnosed it was comforting and a relief for me to be able to talk to other Moms who had kids with diabetes and that had gone through the things I was encountering, so feel free to ask me what ever questions you may have. Since my son was diagnosed we have gone through, summer camps, halloweens, parties, 911 emergencies, sleep overs, puberty, fund raisings, JDRF Childrens'congress, driving and soon will be College life - One step at a time -

Check out this JDRF web site it is an On line support and many questions can be answered here, also on the left hand side you have links with information on different diabetes related issues.

http://www.jdrf.org/index.cfm?page_id=103451

Regards, 

Lali


(ReneeC) #9

Hi Debbie,

My son is 8 years old and was diagnosed 2 years ago Feb.  We were on the NPH, humalog, lantus for 1 year and he was controlled with that as well. In June 08 we went to the pump.  It can be very overwhelming.  Feel free to ask any questions you may have.  Welcome to the group~ I have learned so much for my son, reading responses and checking out the different sites in Juvenation.

ReneeC


(AvasMom) #10

Hi Debbie

My daughter Ava was also dx @ age 5, (8/30/07) 4th day of kindergarten. She is 7 now, and it has been 19 months of adjusting to our new life.  She was on NPH and Humalog in the beginning, and having to adjust her eating habits to meet that schedule was the hardest part for her to date. Our biggest blessings came in the form of a pump (OMNIPOD) and CGM (minimed), which have made her life so much healthier and almost back to normal. Please know that you are NOT alone in your fears, tears, questions and concerns.  The unpredictable has become the norm in our world, we just know how to react and keep on going...I think..

I read a short book called, 'My Life as a Pancreas' and it helped me with many different feelings and issues that I was expierencing, as well as understanding what Ava, her brother and my husband were feeling as well.

Now Ava is in 1st grade. I did talk with her class about her pump, cgm and frequent trips she makes to the nurses office & bathroom  throughout the day, and why all that was important to her health. At first they were all very interested in my talk and Ava's marshmallow looking POD and smaller marshmallow looking sensor,...however, I do believe that my talk ended with someone's turtle named Leonardo died, and their room smelled because of it.  Wow,..the attention span of first graders...

I am here if you need me...

Cheryl

 


(Debbiefran) #11

Hi Cheryl,

 

Thanks so much for your support... It really help to talk to other moms who have young children with diabetes..  There are no support groups in my area..  I really wish that there was one that i could go to... I will look into the book...  Sounds like your daughter was the same age Brooke when she was diagnosed...  How is she doing on the omnipod?  How did you find out the Ava had diabetes...  Does it run in your family?

Regards - Debbie

 


(Debbiefran) #12

Hi Cheryl,

I forgot to ask you how Ava did on the nph and humalog?  Brooke is still on NPH..  we haven't started the fast acting insulin yet...i am able to control somewhat with only nph...  Have you had problems with her sugars dropping low on the humalog...

Thanks - Debbie


(nicoleannemarie) #13

Wow, she's already injecting. It took my daughter (who was 10 when she was diagnosed 3 years ago) a year before she was self-injecting. Of course once she started on her own, no one else is "allowed" to do it.  

 It sounds like you have a great support team in place. Watch out for the end of the honeymoon (which can happen suddenly) and don't get stressed by crazy numbers when it does hit. Use your team to help you make the necessary adjustments.  Our daughter's insulin needs went up dramatically at the end of her honeymoon.  (She daughter's NPH went from 6 while she was honeymooning then 14 twice a day, and now she's on 42u of Lantus per day--yeah puberty).

In regards to special occasions, I started buying smaller quantities of better quality chocolate for all of my kids.  A small Lindt bunny (with an accurate carb count) is much appreciated by all and no one feels deprived. The only one missing the big bowls of chocolate eggs or 1lb bunnies is me (ha ha).


(AvasMom) #14

I also wish there were support groups in my area, however, Ava is the only diabetic in her elementary school.  So far I have only met one other parent in the whole school district that has a type 1 child, and he is a senior.  we do not have type 1 in our families, however my father has 2 auto-immune diseases, so perhaps the genetic link came from that direction..who knows?! When she was diagnosed, she was very lathargic and thin, not to mention the obvious excessive drinking and bathroom trips. her normal weight was 36lbs,..she weighed 32lbs when she was diagnosed. 

the Omnipod really gave ava her old life back. she feels like everyone else, and can eat when they eat, not when her nph is peaking.  she also loves that she can do anything while wearing her pod, and that she doesn't have to deal with tubing is awesome. 

Ava started with nph and h, so we did see some lows,not much of a honeymoon phase for her....but now she wears a continuous glucose monitor, and it has helped us prevent her lows.  the technology that is available is so incredible, and her ac1 has improved as well as her overall mental and physical health. 

how is brooke adjusting?  what is the worst part about all of this for her?  

there is another group that i belong to, www.childrenwithdiabetes.com and there is good information there as well.  we attend their annual conference in orlando,..it is great for ava to see so many other kids her age, older and younger. it seems that she enjoys being like them.

do you have any other children,..my younger son Ben (4yrs) will ask ava if she is low, or what her number is..it is really neat to watch him have such concern for her and realize this is serious stuff.  especially since they seem to be at each other fighting so much!!

Cheryl


(Debbiefran) #15

She is adjusting very well...  The worst part of the whole progress is all the finger poke and giving injections...  I am one of those types that are needlephobic and to see my child continously having to be poked all the time it really gets to me... I am sure that she is much stronger than i am giving her credit...   Kids seems so resilient and things don't seem to bother them like adults...  I am concerned when she comes out of the honeymoon phase...  I am concerned about her going low when she is on more insulin...  There seems to be alot of trial and error with getting the blood sugars under control...  She is not a big eater and a picky eater so meal time is a big challenge as well...  She tends to have more lows before i pick her up from preschool ...  She isn't hungry for her midmorning snack so she tends to be on the low side...  I was interested in the cgm but my endo said that the insurance wouldn't cover it since her numbers are not consistently high....  I feel that it would be a big help in seeing trends instead of having to do finger pokes continously.... 

When she is more insulin dependent then we will consider either the omnipod or pump...  the pump seems to popular these days..

Does it hurt ava when you inject the pod on her..  i was told that it is painfree to inject the pod from a rep and one of the diabetes walks....

Brooke is my only child....

I will talk to you later

Debbie 


(Joshy84) #16

I have never used the Pod but from my experierinces with my Minimed pump, there are sometimes that it does sting a little, but one little poke versus many insulin shots a day is the way that i look at it. I am not saying that the sting i get from my pump is a 10 on a pain scale but it does hurt sometimes. I would imagine that with any other insulin pump it is "virtually" pain free, as there will be sometimes that it is going to hurt a little.

Josh


(Debbiefran) #17

Thanks for letting me know about the children with diabetes website...  It looks very informative...

Debbie :-)


(Debbiefran) #18

Hi Renee,

It is nice hearing from you...  Thanks for the warm welcome...  We are still doing injections and i think that it would be easier if my daugther was on the omnipod or pump...  She hates getting her injections everyday and she tells me that it hurts alot more than her finger pokes...  How do you like the pump to compare to the injections?  Question about Lantus vs nph..  Which did a better job at keeping his sugars under control...  I am having issues when the nph is in its peaking phase...  i am wordering if she were on non peaking long lasting insulin would work better for her...

Thanks - Debbie


(Joshy84) #19

I have like the pump more than giving shots becuse it hurts less, or atleast it does to me. Now, thats not to say that the pump will not hurt from tome to time. Also, you would be going from giving her X amount of shots a day too just one "shot" every X amount of days or when ever her pump was out of insulin. I have had my pump for about 4 years now, and I have only had it bleed on me twice which was a common occourance when I was on shots. I would think that she would probably be a little scared of needle at first because on a minimed pump it is longer than a syringe needle but it is alot less painful. I would suggest getting on an insulin pump to anyonne that can.


(momofrjb) #20

My son was diagnosed 3 weeks ago too.  He is 5 years old.  It feels like yesterday, but sometimes it does feel like a lifetime ago.  We are going through the honeymoon phase too.  I didn't think it would happen so fast.  We have had some scary lows and we are waking him up every 3 hours at night to check him.  We have moved his lantus (2 units) from night to morning to help watch his lows.  We just went 2 nights without a low, hopefully we can stop waking him up so much.  I have read that the honeymoon can last anywhere from weeks to years depending on the person.  I have a cousin that had his honeymoon last for years, but he was a distance runner and they think that was a factor. 

Everytime my son goes outside and runs around for more than 30 minutes, I check him and he is low.  At 5 years old, he is starting to get really frustrated and associating playing with lows.  He is not showing any signs yet, so I just have to keep testing him, sometimes it just gets overwhelming trying to explain to him that he needs to sit down and eat and drink something before he can continue playing.  15 minutes to a 5 year old is like a year! 

I think our biggest challenge is our family.  They all think that this is no big deal.  My sister-in-law was having a birthday party the week after my son's diagnosis and 3 day hospital stay.  We tried to explain that my son was now on a meal plan that needed to be at specific times with designated snack times too.  Since she was starting the party at 4pm, we asked if she could skip the appetizers and she said that she could "meet us halfway", meaning she would put the food out of his reach.  She was willing to let everyone else eat in front of him, but put it out of his reach.   Well, we took a pass on the party until we can educate the family to a greater degree on what is going on in our lives, but, I was rather disappointed in the unwillingness to accept our new lifestyle.  Has anyone else had problems like this?

Thanks,

Dawn