Newly Diagnosed Daughter

I'm not sure if this is the right way to do this but I'll just post and pray for some help.

My daughter Sierra, age 9, was diagnosed with type 1 (waiting on tests to confirm but the endo and all signs symptoms point to it) about 4 days ago. Obviously this is a huge change and we are still in a bit of shock. I'm hoping for guidance on a few things.

1. She always goes the city summer camp where all her friends go since her mom and I work full time. Now we don't know if that camp is qualified to handle kids with diabetes, maybe its overreacting but we can arrange our schedules to go to camp and do her shots but are worried about them knowing what to do if her bg runs really low. The diabetes camps are an hour out of the way, we can work with that but its also only a few weeks out of the summer. My question here is how do others handle this?

2. She splits time between her mom and I so we are trying to work out ways to share her bg levels, insulin and food preferences via text, email and whatever else but was wondering if anyone else has faced this and come up with better ways to at least share her bg and insulin doses (just started so still doing slide scale).

3. We have been planning a family vacation to Florida in a few weeks (provided the oil spill doesn't ruin it) and Sierra loves going there but its a long drive, big family going(super supportive) and days on the beach. I think it would be great for her to know that diabetes won't stop her from living and show that she can do whatever she wants with some extra planning, but wanted to see how y'all plan your vacations for driving or beach vacations. I know we'll have to check her bg more often and make sure we have plenty of snacks but was wondering about the drive times and testing and everything that goes with that kind of vacation.

I would appreciate any advice, suggestions, anything really.

 

Welcome to the board, sorry you have a need to be here.

As far as camp, if the only thing that might hold her back is how to treat lows, then let her go. She's 9 and I'm sure she'll be able to check her own bg and determine if she needs to treats based on the info you and the endo give her. She can keep glucose tabs or smarties or skittles etc.... treatment of choice on her person (pocket, fanny pack, purse). It can easily be worked out with some thought and planning.
There are families here who divide time between households, hopefully they will see this and chime in with advice.
Glad you found us, it's a great place for answers.:cwds:

 

So sorry you are going through this. I really don't have any advice to offer, my son is still little, so we haven't gone through camp before. I will say that we recently took one of our first vacations and his bg was very erratic, but it was totally worth it. Vacations and day trips will be more work than before, but it is important to try to keep you life as normal as possible. Maybe others will disagree, but I would take the trip (at this point you all probably need a little relaxation!) Welcome!

 

A dx of type 1 is a radical, life changing event in a child's life and for the parent as well. If it's taking days to dx then I really hope that the Drs are wrong and that it isn't type 1. For most of us dx was not a drawn out precess. However if your child is dx'd with type 1 - you'll really need to roll with it for a few weeks before you can begin to plan for camp and vacations - yes all that is doable but I think maybe the first few weeks will be spent trying to learn about her body and how it responds to injected insulin and ingested carbs.

But hopefully you won't need to join our tribe:cwds:

 

I'm glad you found CWD so quickly. Everyone on here has been so helpful. Sorry for the new diagnosis.
My daughter is 11 and was diagnosed at 9 as well. Now , she is quite independent in testing bg and treating her own lows. However, when she was first diagnosed she always liked the support of someone being there who knew what was going on if she felt low. It was a scary thing for her at first.
I always ask if I can have a short time with staff before the start of a new camp. I let them know of her diabetes, show them her "equipment", and treatment procedures, and let them know signs of low blood sugar and high blood sugar.
Everyone has always been very receptive and grateful for the information.
Good luck....and the attitude that the diabetes shouldn't get in her way of doing things....is the best!

 

Thanks for the fast reply

I appreciate the quick response. I called one place and that was interesting, the first person I spoke to told me all counselors had first aid training certs when I asked if they knew how to deal with children that have diabetes (she also told me that we would just need to tell them how much to inject and they would do that as well, I told her no, we would come to camp to handle that part but thanks). I was able to get more info from a supervisor but that whole conversation was an eye opener of sorts.

The problem we are facing is none of us know the signs of her low blood sugar outside of testing and the normal all encompassing pamphlet they give out, she was just released from the hospital yesterday. We could give her glucose tablets or skittles or lifesavers but I don't know that she would know when to take them. She's still running high most of the time right now. Her bedtime bg was 198 which was great, first time she's been below 200 in the last two days. We are keeping her at home for the next two weeks while we all adjust to our new life.

I hate answers that start with I know... and end with but, however right now, I'm a bit lost, confused, scared for her and maybe sad as well, definitely overwhelmed and also very proud, she has been amazing. She actually comforted me the first time I had to give her a shot, telling me I did good for my first time and that it was a shot and shots are supposed to sting a little, lol. She's angry as well, which we've told her is normal and expected and to talk with us about how she feels about her disease and the treatment and foods and everything really.

I know I'm rambling a bit, but honestly this is hard and I can only hope that I become as comfortable as everyone else on here in dealing with all of this.

 

Hi,
I am so sorry about your daughter's DX . I don't have any insights in handling D in two households or non-diabetes camps but I would like to add some comments as far as the beach goes since we live in Florida .

Your daughter can absolutely go and do anything she had planned at the beach! It just takes a bit more planning. Make sure that she checks her blood sugar frequently while at the beach, in case of my daughter, the beach, waterplay and swimming drives her blood sugar down BIG time! Have a cooler with you with lots of small 15-20 gram carbohydrate snacks, maybe some juices, gatorade or other quick-acting sugars. I would also strongly advise you to store the insulin in the cooler to avoid the heat getting to it. (The heat index today was 107F!!). You can put the insulin in an old sock to protect the bottle and avoid it touching the ice element directly. Just make sure to warm up the insulin sufficiently before giving it to her as cold insulin will sting .

Has the Dr mentioned yet what insulin(s) your daughter will be using? The management can vary greatly, and each has its merits and disadvantages but the beauty is that this CWD forum is full of parents who have been there done that and are happy to share their experiences and "lessons learned".

I am sorry you had to join our growing club...

 

My son is much younger, so things were certainly different for us. I would say, if she's doing well, then go on your vacation as planned. Just know that her numbers will be off, and plan on testing a lot.

As far as getting info back and forth, get a notebook (preferably with the pages that don't come out), and keep really good notes. For the first 2 months, we wrote down every single thing that happened - numbers, meals, carbs, times, where we gave shots, etc. It really helped with being able to look back and spot a pattern. DH and I work opposite shifts, so it would help to be able to see what he had done the day before, and how it worked out.

Anyways, welcome to CWD. I'm sorry you have to be here, but this is an awesome place for advice and support :cwds:

 

As far as the diagnosis, the doctor referred to her as Type 1 and all of our paperwork is for type 1 along with all of our planning, classes, etc but they told us they were doing testing to verify which we haven't heard results on so my assumption is type 1 as well.

She is on Humalog for the rapid acting insulin and Lantus for night time. Her dosages vary on a daily basis (we started in the hospital on a drip due to DKA for almost 36hours, then 3 units and were bumped a unit a day until we left) so we are now at 5 units with sliding scale. She'son low fat on top of the carb diet due to crazy high lipids (normal is 100 she was at 4000 initially, her blood looked like red pastel paint). On the positive side I guess she taught the doctors something since there were only two cases of the lipids being that high in new onset, one from 1980 and one from 1967 (the docs had a bet going as to who could find the 1967 case since it wasn't digitized yet, lol).

Thanks for all the advice, it is much appreciated.

 

Sorry about the diagnosis, but glad you found us.

Regarding your questions I'll answer using your numbering:

1. Whether she can go to camp will depend on whether she can reliably feel her lows. Sounds like you haven't had lows yet since diagnosis, but once she starts drifting down into range there will be times when for one reason or another she starts heading low (ie. under 60). If she can reliably feel those lows coming on and you can impress upon her the importance of immediately stopping what she's doing and responding to those lows by treating with carbs - well then I think she's good for camp, esp. if you parents can be there to do the shots. If she can't feel the lows, then I'd send her to diabetes camp this year - too big a risk and too heavy a load to put on the camp people and your daughter so soon after diagnosis.

2. You want to set a daily log book that travels with her, and for every day lists:
- all blood sugar results;
- all carbs eaten;
- all insulin(s) given including basals and boluses/corrections (including time and dosage of each injection);
- all significant exercise.

3. Somebody else posted about beaches and that was good advice. If you're with her, go for it.

 

Sorry to hear about your daughters diagnosis.. My suggestion is to keep her life as 'normal' as it was before.. if she was going to go to camp, send her, if she was going on vacation, let her go.. vacations can be tough though.. that extra exercise and excitement can do weird things to bgs.

 

I just wanted to say welcome to the group. You will learn sooo much from the people on here and get a lot of support. You've already gotten some great answers to your questions. I agree with the pp that said to live your lives normal and let your daughter do all the normal things she has before. It takes more planning, more bg cks while on vacation, but it's worth it! Good luck!

 

Welcome, we were dx a month an a half ago. We didn't have all the bloodwork either at the time she was dx but we were told there isn't anything else it will be. The bloodwork that did come back was just the antibodies and regardless whether or not they were elevated she was still T1. I am sorry you are going thru this but you will gain a huge amount of information.

 

Hi. Glad you posted. People on here always have great support for any questions! So feel free to ask away!

1. Camp - If it was me, I would probably not send her to camp this early after dx. THis is because of what the other posters said about lows. Unfortunately, camp activities can cause lows with all the physical activity. It would terrify me to send my child off without the child (or me as parent) having a good enough handle on how they react to lows and activity. (some activities don't bother kids, while others make them drop or go high - depends on the child). However, if you can make it work to be there a lot, that would be better. So I guess it all depends on how you feel at that time. Since you probably have to make a decision sooner rather than later *I* would probably skip camp this year. After this year you could come make an informed decision about camp based on your child. Another option is a camp for diabetic children. We are sending our son to D camp this year for the first time.

2. No advice here. Sorry!

3. Vacations - Go, go, go! Absolutely go! If you are there, you can keep a watch over her. Like the other said - take a lot of fast acting carbs and test often if there is a lot of swimming or other physical activity (even walking a lot). Driving long distances may make them higher because of lack of activity so just be ready for that.

 

We had a vacation booked to Hawaii when my DD was dxd. In my frame of mind I would have canceled if I could. We were still calling in numbers to our Endo daily, there was a time change,and we were all still in that phase of being afraid to go out to eat or go to a movie. At the same time I was determined not to let diabetes hold us back.

Going on vacation was a perfect way to breakthrough those early psychological barriers. We had the best time. She swam and snorkeled everyday, went jet skiing, parasailing and hiking. She learned she was going to be okay and I learned I could handle just about anything. It was a huge confidence builder and showed us that life goes on.

You have to be organized, think your plans through, come prepared with snacks, test often, treat any lows and have fun.

Now we have been on many vacations and I have also learned not to worry about a few crazy bgs on vacation. What happens with blood sugars on vacation is irrelevant to her long term health. So as long as she stays safe, feels good, and has a good time, I'm not going to worry about it.

Welcome to CWD.:cwds:

 

I would go on the family vacation but I would avoid the camp I think it is too much to ask from her at this point. Everything is very new and you all need time together to adjust.

 

You sound like a great dad, I wish my ex was more helpful the way you seem to be Keep up the good work. The most important thing with your ex to to not blame and keep the communication open. Good luck!:cwds:


Is the camp just during the day kinda like daycare? Or is it overnight?

 

Hi there, sorry you're here.

If it is just the first few days of insulin it isn't a surprise if she isn't feeling lows yet. Like a lot of thinks in life it takes a little practice.

I'll toss in a tiny bit of unsolicited advice about lows and newly diagnosed. It isn't uncommon to see lows and back way off the insulin in the first days / week. Her body may not be accustom to using injected insulin and her poor pancreas has been running flat out. As her system get used to using the injected insulin she may need less, a lot less. So I would be on the look out for lows over the next few days. You may see a change in behavior even before feels it.

Here's a link to my blog newbie tip on these lows.
http://www.ydmv.net/2008/01/newbie-advice-i-insulin-resistance.html

Our experience is long car tips are doable but it a good plan to check blood often as the trips seem to mess up blood sugar.

I think camp would be doable with regularly scheduled blood testing and am a huge fan of using text messaging to communicate blood info and reach out for a second opinion on what to about it.

Wishing your family all the best.

 

Just wanted to say welcome and add my two cents about the day camp.

The critical thing is for staff -- ALL staff that might have contact with her -- to understand the signs of a low and understand that it requires immediate treatment. They don't have to worry about her being high, her diet, or whatever. Only the lows are emergencies that they might need to help her with.

I would meet with them personally, and make up multiple copies of a cheat sheet going over signs of a low and treatment protocol. You can also stress that if they're wrong and she's NOT low, they do no great harm by erring on the side of caution and giving her a juice box, but ignoring a low can have severe consequences.

 

another suggestion for camp is ask if they will allow her to keep a cell phone in her diabetes kit, she could then text or call you or her mom if needed.

I would have her test at least 3 times a day while at camp (before/after any high exercise activities, snacks and meals)
There also must be someone who she can go to all times and she just carry her supplies around.

It is a lot but my 7 yr old was just diagnosed and is very good at all of it! You will be amazed at how much they mature so rapidily.

sorry that you are joining us and good luck!!!

(oh and go on vacation! we were on a cruise last week and it was awesome!!!)