newly diagnosed...refuses to test!!

[dmama]

DD is 6 yo and refuses to get her blood sugar tested. She does not yet require any insulin, so I guess we're in the honeymoon phase.

I am able to test her after she falls asleep, but in the morning, it is spotty - sometimes she wakes up. Daytime testing has not yet happened!! She's very angry and acts out in every way possible.

DH and I have decided not to physically hold her down while she is not yet insulin dependent. We are extremely concerned about lasting psychological issues.

Nothing is helping - we even bought a handheld game to distract her, but she wants it w/o any strings attached. The mother of all wars keeps coming up every day and I'm completely stumped how to get her over this hump.

BTW, this is the same personality as before the dx - still learning how to handle her anxiety.

Thanks for any advice. The local hospital only advised us to try the pm/am checks while asleep. They've not dealt with a child so strong-willed before.

[MelissaC]

My dd is 6 years old also and VERY strong willed! I am thinking that to be that case with a lot of these sassy liitle ones but Thank goodness they are sassy - they need it to stay strong!

In my opinion if my daughter were not checking her BS she would not get the hand held game PERIOD!!! I know that sounds rough but if I have learned one thing duirng out 9 months into diagnosis is that you still have to discipline and not let them rule the roost so to speak - we did this with Avery in the beginning and it backfired on us - we are just now getting her to act as if she were a respectful little girl (not to say that your daughter is not!)....

I would be very honest with her and tell her that checking her BS is not negotiable - She has to do it period... What will you do when she has to check 6-10 times a day? (it will happen sadly enough!) - I know it is hard and I I feel so bad for them..... Some days I search all over Avery's fingers for a prick free spot and cant find one!

You need to check too so you can know when it is time to start using insulin...

Good Luck- I hope it all works out for you :)

[Amy C.]

No child with diabetes should be allowed to opt out of test.

My son did not want to receive shots and didn't like the testing -- because both are essential, he was not given the option. It he didn't cooperate, I bribed him. (Some call it a reward system.) At first, he would not respond to this either. He had to be held down to be tested and given a shot. I just did it as fast as possible. After about 6 weeks, he stopped struggling. After 10 years, he is fine.

You must start testing your daughter. It is far worse for her to know she can manipulate you and her father and get out of testing. The damage from not doing blood testing is far greater than her not getting her way.

Other ideas:
--Find a lancing device that doesn't hurt as much. Mult-clix is higly recommended.
-- have her test her animals or test you.
--set up a system where if she does so many blood tests without too much of a struggle, she gets a toy. I bought the toy first and put it on the shelf so my son could see it.
--let her know that you love her and that testing is essential to keep her healthy.
-- ask your endo for advice.

[Sarah Maddie's Mom]

No insulin at all?

[mischloss]

Sorry you are having such trauma with the little one. A couple of suggestions. First of all are you sure that you have a good lancing device. Some are more painful than others. The Soft-Clickx and Multi-clicks devices by I think Accu-Check are very good about adjusting for little fingers. Be on the number 1 or 1.5 number at the most. She will have to get over being testing while not asleep, this is something she is going to have to do for the rest of her life until there is a cure of course so the quicker you establish a routine the better. I like rewards myself. Something like charting on a calendar with gold stars....which add up to a prize? If she fills up a calendar "day" with let's say three gold stars for doing well during testing then she gets to pick out a prize from a shoe box. You can buy simple 5 and dime items and place them into this "treasure chest" and she get to choose one when she does well. Also, can you take your blood test in front of her a couple of times. Try to put on a brave "expressionless" face or even a slight smile as you test your blood and have her "participate" in it. Even let her "click" the lancing device against your finger. It is a wonder how little kids (even my son) thinks that if mommy or daddy are doing it then it can't be that bad! The other thing I can think of is icing down her finger right before a poke. It does help numb it. And be sure you don't poke the finger pads only the sides of the fingers where they are less sensitive.

She is going to have to do this because eventually when she will need to be on the insulin shots, all heck will break lose. If she can't tolerate the finger pokes how is she going to tolerate the shots? Oh and maybe also get a teddy bear that takes finger pokes with her??? She can act it out with the teddy or dolly.

Hope some of this helps.

[Mary Lou]

Welcome to this board, I hope you find it as comforting as I do.

We were not allowed to leave the hospital until we could successfully give Brian a BG test and injection. He was completley freaked out and had a fit every time. he was six and a half. We told him that there are things in life he has a choice about and things in life he doesn't. He is insulin dependant, and so is your daughter. They don't have a choice regarding finger pricks and insulin injections. period. We held him down and gave him the check. And held him down again. And again. And again. Until he put his finger out every time that we asked him to.

That's probably not what you were hoping to hear. If it is any consolation, three and a half years later he is the most cooperative kid around and does many of his own BG checks and is a big help to his little brother, too. (It didn't take three years to be cooperative, once he submitted to us and realized that we weren't backing down, we never saw another fit).

I am not a heavy-handed parent. I am a Montessori teacher, and I have the utmost respect for my child's opinions and positions, and try to do everything I can to take those opinions and needs into consideration. But when it comes medical care, there simply is no choice. For any of us.

Good luck.

[Nancy in VA]

I wouldn't make it an option either. And, the game would come AFTER the finger stick - and I would be rationing the time - maybe 15 minutes after a stick and then put away until the next time for a stick, and then again not UNTIL the stick.

You wouldn't tell you child its ok not to brush their teeth, or eat food, or go to the bathroom in the potty instead of a diaper, or that they don't have to good to school, or listen to you, or go to bed - this is no different and actually its MORE important that many of those things. You have to get control and show her who's in charge - this is too important not to

[dmama]

OMG - thank you everyone for your quick replies.

We have not yet let her play with the handheld game because she has not yet cooperated. It sits in full view as an incentive to her. The toys we bought her on the way home from the hospital (after her dx) were also taken away and promised to be returned when she is cooperating with the testing.

Even before the dx, she has never been the type to respond to a reward system. Potty training was next to impossible... I have even taken her to the store to pick out rewards in advance (before dx), but she feels completely overwhelmed when it comes time to earning the rewards.

I should add that she is more like the size of an avg 8-9 yo, so that does not help (for holding down). I can actually get to the point of poking her, but then her thrashing around smears the blood off of her finger before I can put it to the meter.

We tried the EasyTouch, and she got frustrated with that. Now we have the OneTouch UltraSoft. It is better, but she still claims it hurts - not sure if changing devices would help. It's all using the same small needle (the .3??). I will look into the suggestions given.

Today will be her first day back to school and I'm not sure how I'll be able to get her tested there. I may be back here for more advice soon!!

[mischloss]

Today will be her first day back to school and I'm not sure how I'll be able to get her tested there.

You might just be surprised that she safes all the "drama" for you and that she might actually be more cooperative or at least sit still better for the teachers. :cwds:

I have a stubborn child as well believe me I can relate. But as the other posts have said, this is one fight that you must win at all costs. Good luck and keep us posted.

[Lee]

Poor little girl is really having a rough time. However, as Mom and as Dad, we have to do it, no choices...it is their life on the line!

I would make her test every 3 hours she is home until she is comfortable with it. It DOES hurt, it IS traumatic. Unfortunately, it will save her life!

Also, get her and your entire family into a group therapy as soon as possible. Explain the reason why, that your daughter was just diagnosed and is having a tough time with it. Explain to the therapist that she is not cooperating with life preserving, critical testing. The counselor will a) help your family learn some skills in dealing with a stubborn kids (been there, so I know this helps!) and b) help your daughter adjust to the changes.

[LJS118]

Unfortunately testing is not an option its something that has to be done. She has to know that she can negotiate her way out of other things but testing is not one of them. Eventually testing and shots will be her life support--if you need to hold her down(as bad as that seems) she has to know that it has to be done. Good luck

[Momto4]

I can imagine how hard this must be, but remember - IT'S NON-NEGOTIABLE.

[Momof4gr8kids]

I wouldn't let testing be an option, either, no matter how hard she fights it. Make sure she gets poked each time, weather you get a useable sample or not. I know that sounds so mean, but here is why I am saying this.
When that number becomes life and death, if you have to fight with her about it, it will put her in even more danger then she is already in. Once she goes on insulin she might go low. When that happens, if she wont test, you can just treat, but if she is really high then you could be sending her into the other danger area of too high and DKA and wont even know it.
Here are some ideas that might help. A lot of fight is sometimes about control, so try and give her some control. Which finger does she want to use? You could let her click the lancet back, or push the button to poke, you can let her help with the whole test if she wants, and as long as she doesn't thrash. Tears are ok, being scared is ok, and not wanting to do it is ok too, but it still has to be done. You know your DD best. If reward programs have not helped in the past, what has? Build on that.
You must have an interesting dx story and have caught diabetes early to not be on insulin. If and when you are ready to share it, I'd love to hear it, as I am sure others would, too.
Take care, and keep us posted. Jamie

[Ellen]

While she has a right to have her feelings validated about how it hurts, or it's scary, or she hates it etc., she will have to have it done. It may help to say it's check time, and you could check your own blood sugar first, change the lancet and then check hers. Sometimes the feeling of partnership makes it feel less overwhelming to the child. Follow up with thanks for checking or any other positive acknowledgement you can find from the situation. Good luck. This is a tough time for you as a mom.

[Mama Belle]

OMG - thank you everyone for your quick replies.

We have not yet let her play with the handheld game because she has not yet cooperated. It sits in full view as an incentive to her. The toys we bought her on the way home from the hospital (after her dx) were also taken away and promised to be returned when she is cooperating with the testing.

Even before the dx, she has never been the type to respond to a reward system. Potty training was next to impossible... I have even taken her to the store to pick out rewards in advance (before dx), but she feels completely overwhelmed when it comes time to earning the rewards.

I should add that she is more like the size of an avg 8-9 yo, so that does not help (for holding down). I can actually get to the point of poking her, but then her thrashing around smears the blood off of her finger before I can put it to the meter.

We tried the EasyTouch, and she got frustrated with that. Now we have the OneTouch UltraSoft. It is better, but she still claims it hurts - not sure if changing devices would help. It's all using the same small needle (the .3??). I will look into the suggestions given.

Today will be her first day back to school and I'm not sure how I'll be able to get her tested there. I may be back here for more advice soon!!

First of all she needs to come to terms with the fact that from now on testing will be a part of her life every day forever. If you need to get a psychologist or counselor involved who deals with children with Type 1 Diabetes or other chronic illnesses, then do it. Ultimately, since she doesn't respond to rewards, it sounds like the only way that she is going to test is if you force her. Do what you have to do. It will not be fun, it will not be pleasant, but it is necessary. She cannot be allowed to believe that testing is a choice. Period. I would give her the choice of doing it herself or letting someone else do it for her. Maybe if she can do it herself she may experience less pain. Some kids are that way.

Also please get a Multiclix lancing device now! My daughter has been testing for five years and we've used the one touch ultra device among many, many others and hands down Multi Clix is the least painful. I have used it myself and half the time I can't feel it.

Finally I would talk to her in a non-confrontational manner about what is upsetting her so much (do it at a non-testing time). It sounds to me like it isn't so much the testing as it is "everything" that goes along with being diagnosed. If she's getting upset after the finger stick then chances are she is upset about something else, like she's angry that she has to do all this new stuff, most of which hurts. If it is the pain of the testing, then get a new lancing device for her and use her old device to stick your finger with her. If you do it together maybe she will feel less alone. Later you can stop doing it, but at this point it may help. You could even let her stick your finger for you, after she has done her test?

Bottom line is that if you continue to allow her to dodge testing she will think that she has an option and she doesn't. There will come a time when she gets ill and you'll have to test every 2 hours, that's 12 times a day. If she is having difficulty with twice a day then you need to get past that quickly. Also, if you think testing is hard, just wait until you add injections to that. I don't mean to overwhelm you and freak you out, in fact I don't want to do that at all, because I know as a parent you are dealing with a lot of emotion and frustration right now too. :( But this is your child's life. Diabetes is a seriously life threatening disease and it is not okay for her to get away with not testing.

Welcome to the forums. I am sorry you are dealing with all of this. Please keep us posted with how things are going. Many of us have videos that you may want to watch and then share with your daughter (I'd screen them first as some of them show big needles which may freak her out). My daughter's video actually shows her doing her own testing before breakfast. Maybe it will help her to see other kids doing it? Just a thought.

[Abby-Dabby-Doo]

Most of the kids here use the MuliClix lancing device to poke there fingers. It's the lancet device that comes in with the Accucheck meter. We use the Accucheck lancet device but the One Touch meter. I'm told you can buy just the lancet device separately at Walmart. It's virtually painless. It has a drum of lancets inside, so they aren't exposed, and you don't have to change it every time you use it. You just turn it to go to the next lancet. I would suggest that first.

This is a life long disease (until they find a cure), so checking her blood sugar is going to happen 6 to endless times a day. By not checking her blood sugar your just opening the door for many terrible things to happen to your daughter. Strong willed or not, you as parents need to take control and make this happen. I absolutely hate telling you this. I'm sorry this is your first time here on the board, and I'm typing this to you. I just want what's best for you and your daughter. If you have to go to the school every time she tests her blood sugar until her attitudes changes than you need to do so. If you need to hold her down every time she tests her blood sugar, than that's what needs to happen until she starts doing it on her own. This isn't going away. Believe me, a lot of us here would love to take this on ourselves than our children dealing with this.
Does her teacher know what to look for with a low blood sugar. Who is walking with your child to the nurses office, she should never walk alone. Do you have a school nurse?
I think once her blood sugars are under a little bit better control she might not be so hard headed. High blood sugars can make you very cranky, and hyper but of course it varies from child to child. Strong willed might help with this disease down the road.
I wish you nothing but the best, I hope this gets better for her and you. :cwds:

[Hollyb]

Just wanted to add a couple of "technical" suggestions. Aaron finds the One-Touch Ultra Soft lancets to be more comfortable than any others we've used, even others that are theoretically the same size. And then -- make sure your lancing device is turned down as low as possible and still draw blood. On a newly diagnosed child, you probably want the very lowest setting. It DOES hurt if it's turned up too high!

Make sure you're poking the sides of the tips of her fingers, not the very ends. And... you might want to do it yourself, with her for a while? Sort of in solidarity, but also to reassure yourself that it's a small hurt, not a big one. I suspect this is a lot more about anxiety and perhaps also anger/fear at the diagnosis than the tests themselves. A counsellor might be able to help your daughter learn some coping techniques so she can handle the tests better.

Good luck.

[Lindy]

When Cooper was dx'd - he was completely freaked out by the needles and finger pokes. Hubby was gone, so I was on my own. I had to hold him down, get VERY stern with him and tell him he didn't have a choice.. It was awful. He cried and cried - and then I would go into the bathroom after it was finished and cry myself.

He wasn't being stubborn - he was really scared. I would sometimes have to hold him down on the floor and sit on him.. And, no matter what - you couldn't talk him out of being scared..

We let him give us shots, we did reward (sticker sheets) - which for us worked great. It got easier over time - but testing and shots were not negotiable!

Would she like to poke her own finger? Does she want to give you shots or check your finger?? Good Luck!

[Mama Belle]

Also, here is the Multiclix device we are talking about. You can get it at most drugstores, but your endo may have one they can give you. At walgreens.com it runs around $30 (http://www.walgreens.com/store/product.jsp?CATID=100132&navAction=jump&navCount=0&skuid=sku1557253&id=prod1557264#):

http://a1061.g.akamai.net/7/1061/5412/home/www.walgreens.com/dbimagecache/344754.jpg


This device requires special lancets that come in a drum. There are six lancets to a drum and they are inside the drum so the kids never have to see the scary needle. They run about $15 per box (without insurance), which gives you over 100 lancets. You may be able to get these covered through insurance for a small copay.

[momofphoenix]

I am so sorry to hear about your daughters diagnosis, welcome to the board...

Have you or your husband done a fingerstick on yourselfs so your dd can see someone else do it? My son was dx'ed at 3, he had a very hard time with the fingersticks and injections but we let him know right off the bat that it wasnt an option (altho when he was dx'ed he was very ill and in the hospital for 2 weeks) My DH and I did fingersticks on ourselfs so my DS would see us do it and then he wanted to see what his # was. We made it a game once he was old enough I explained to him why we have to do the fingersticks, now he shows his friends how he checks his finger....

Please keep us posted on how things are going.....

Big Hugs to you and your family.

[Mom2Will]

We had great success with the video from CWD "I have diabetes too". I'm not sure how I was able to get it because I signed up for absolutely everything I could after dx. My son was happy to know he was not alone and began doing the finger pokes and giving himself injections after watching that video. The video shows children doing those things for themselves and for my little boy it helped him to know he was not alone and I think he feels he has some control over this @#%^* disease!

[Ella's mom]

Hi dmama:cwds:

I haven't read through all the posts.....so not sure if I will be re-saying what others have shared.

Is your daughter into pre-tend play at all? If so try letting her "play" with her baby dolls or barbies and checking their blood sugar.

Hoping things settle into a routine soon for your family.

Take Care:cwds:

[czardoust]

This might help I dont know. When you were in the hospital getting "trained" on how to give shots, did they ever tell you the trick about giving the shot in the back of the upper arm? The child cant see the needle, its supposed to make it less painful. "out of sight, out of mind" kind of thing. We did this with my daughter until she got used to the idea of taking shots, then of course we had to warm her up to the idea of rotating sites. I guess we were lucky in a way that Kat was 3 when she was dx'ed. She is 6 now, and a hand full. Sometimes I say "Kat, come get your BS checked" and zooooooom she's off somewhere, I have to chase her down, and she's laughing cause to her its kind of like a game. Your daughter will get over this fear and give the control back to you. Right now she's scared and she senses emotions from you guys too (mom, dad, siblings). She'll figure out that with the insulin, she feels better, she isn't draggy and sick and grumpy. Without it, she will feel terrible. Its a hard truth for kids to swallow, but they "get it" and change their ideas..... Im sorry it takes precious time though. Love, Carolyn

[3js]

I can remember holding my son down in public to give him his puffer with the aerochamber mask. Not fun, and lots of stares! But eventually kids adjust- I promise you. And don`t worry about longterm psychological damage. Kids are very resilient. If you treat it matter of factly, and be empathetic, rather than sympathetic, they will come around.

Of course, inside you will be feeling like crumbling. My son has a lot of anxiety, and is big for his age. It wasn`t a fun time, but we got through it. My heart goes out to you. I feel VERY fortunate not to have had d to deal with at that young age.

[Lee]

I had another thought on getting your daughter to test more frequently...make it a guessing game, and who ever is closest gets something, like the comp for 20 minutes or control of the remote or a quarter or something...my daughter loves to play this game even without prizes...I hate to play the guessing game, because I just want to know what the bleepin # is!!! But, she has a good time with it and it puts a little control in her hands and show that d isn't always serious...

[kiwikid]

Hi dmama,

How about showing your daughter THIS thread:http://forums.childrenwithdiabetes.com/showthread.php?t=2609&highlight=pics
Let her know that ALL these kids, and hundreds more have finger pricks and shots everyday too. Rachel loves seeing other kids with D.

Theres a fair few 6yr old girls with D on this site :) - maybe we could start a round-robin letter and let them all communicate by mail ?

I LOVE sending mail LOL

[clb1968]

I am an adult, but the Multiclix is my favorite also. You can call Accu Chek and they will probably send you one free. Their number is 1-800-858-8072 and they have a 24 hour customer service line.

Hopefully it will get easier with her over time. Good Luck

[Margaret O]

Can you start with testing on her arm instead of fingers? Our son started on arm from day one. He occasionally uses fingers, but our endo supports tests in the lower arm. It might be a way to ease into it. I know most recommend finger sticks, but if it is a way to get adjusted to multiple tests per day it might help.

[AJsmom]

I'm so sorry you're having such a difficult time! I have not read all of the posts, so I may be re-stating this. How does your daughter feel about doing the bg test herself? My son enjoyed life much more when he had some "control".

Keep us posted-
Laura

[jeep_bluetj]

Can you start with testing on her arm instead of fingers? Our son started on arm from day one. He occasionally uses fingers, but our endo supports tests in the lower arm. It might be a way to ease into it. I know most recommend finger sticks, but if it is a way to get adjusted to multiple tests per day it might help.

I 2nd alternate site testing. It's less painful, and easier for us.

Most importantly: For your DD to live, she needs to test. It's really no different than not stepping in front of cars, breathing, or eating. You, as the parent, have the job of protecting your child. That means testing her BG, and giving shots.

It's part of life. If mom and dad have the "this IS going to happen, no matter what, even if we don't like it" attitude, this attitude is picked up by the kid.

Remove ALL drama from the process if at all possible. Don't soothe the fit for hours, etc, etc... It happens, it's done, good job - go play.

[badshoe]

Well said Jeep.

I would suggest you think about going to the FFL conference next summer. There is value in the kids being around other D kids and there are some very good sessions for parents.

One session that was very good was the diabetes isn't negotiable talk.

It isn't. We don't have to like it we do have to do it.

[wendyc]

Remove ALL drama from the process if at all possible. Don't soothe the fit for hours, etc, etc... It happens, it's done, good job - go play.

I agree on this point. Don't feed into the drama. No matter how hard it is, just be matter of fact about it.

We've all been there, I don't want to test, I hate diabetes. However, it is what it is. Testing is non-negotiable. She is going to need insulin and probably sooner rather than later. It's best to get over this hurdle asap. Because, the needles will be another big hurdle. Test her at set points of the day regardless if the doctors are telling you to hold off. It will also give you an idea of what her body is doing too. Test before breakfast, lunch, dinner. Get her into a routine. But no matter what, don't make testing an option.

Try this:
Ask her what she doesn't like about testing. It's probably that she's scared and it does hurt a bit. Let her know that it's ok. Give her a pillow to punch after. It may be that you need a smaller gauge lancet. The ones they give you at the hospital are the large ones.

Let her pick the finger to test
Let her set up the meter and strip
Let her test a stuffed animal or doll after

Let her have some control of the situation, but not all of it. This is part of her life, she has to test to be safe. That is why it's not ok to say alright honey, we'll just do it later. I've been known to catch Abby at the bottom of a slide, wipe her finger with a wipe, quick poke her and run the test. Takes about 3 seconds.

I know this is an incredibly hard transition. If needed, you might want to talk with a family therapist. Our endo facility actually offers this service, they work one on one with the child, then with the whole family. Also, does she have anyone else at the school who has d, or is there someone in your area? We found that meeting with others really helped. The big turning point for Abby was when my neighbor (also T1) tested right in front of her.

Good luck!

[twicker1]

Well, if your daughter is like Brandon when he was dx'd, then I'll tell you what we did. He was given the option of picking a finger, site, etc, ONCE. After that we did whatever we had to do to get a finger stick or shot given. That mainly consisted of my husband and I holding him down, sometimes with legs over him, prying a tiny finger out of a fist for a BG check. It killed me. I cried, he cried and screamed, but he has always been VERY headstrong.

If we tried to have him do it, or wait for him to cooperate, then we would be there for hours, or DAYS. This was the one area he had to know that it had to be done regardless. There were hugs afterward, and even him running off saying he hated us. He couldn't care less if I tried to explain this was for him to be healthy. He didn't care about the books for kids. He didn't care about videos. It was just something that he had to learn to accept in his own way, and he did. He was a rough first couple of weeks to say the least, but believe me, she WILL get use to it.

I'm curious that you said she was big for her age. Is she just large in stature, or overweight? I was wondering if this was a definite Type I diagnosis, and how you found out so early without needing insulin?

[deafmack]

One thing I can see why your daughter is refusing to test. She remembers the testing in the hospital and at the doctor's office and it does hurt. One thing that may help is to get the Accu-chek Multiclix Lancing Device. It is a lancing device with 6 lancets that come in a little drum and is virutally pain free. Also she will not see the needle at all and it will be much easier to test her. When I go to the doctor I always insist on using my multiclix instead of the lancet they use. Let your daughter know she does not have a choice. She needs to test. Each time she tests without fussing she can earn a privilege such as 15 minutes with a video game, etc. or she can earn coupons which she can turn in for extra special time with you.

[dmama]

Hi Everyone,

Just wanted to pop-in to let you know that I am so thankful for all the responses. This is a WONDERFUL board.

I am juggling just too many balls right now and burning the candle at both ends, so I'm not able to give the kind of reply that I want to, but know that I am taking notes and trying to chip away at stuff before we go the tie-her-down method. I know...that's the biggest point of all. But I want to get the endo's opinion as to how critical all the numbers are at this stage (remember she's not yet on insulin).

Quick background: she was in a TrialNet study to see if certain antibodies are predictors of Type 1. she tested positive and then was moved into the next phase w/ a glucose tolerance test. that's where she was declared a type 1 (between the results from phase 1 & phase 2).

We know that it's just a matter of time for the honeymoon phase to be over, but part of us is thinking if it's even a whole year away, why strongarm her into it now?? Once on insulin, we know there is no turning back and we definitely would do everything physically possible to get with the program. GOT THAT!

Anyway, since yesterday I've been trying desperately to find a mental health professional who deals w/ chronic diseases but I have yet to pinpoint one. Working on that and getting a response from the endo. We're also desperately trying to find a research study that will take a 6 yo in the early stage (i.e., a study that is trying to determine the effectiveness of certain meds in delaying full-fledge onset).

I may not be in touch for a few days, but please know that I try to lurk between screaming fits from my toddler.

[Momof4gr8kids]

Maybe try your local hospital and see if they have a child's life specialist you could talk to, or maybe s/he can recommend someone.

[Mama Belle]

Hi Everyone,

Just wanted to pop-in to let you know that I am so thankful for all the responses. This is a WONDERFUL board.

I am juggling just too many balls right now and burning the candle at both ends, so I'm not able to give the kind of reply that I want to, but know that I am taking notes and trying to chip away at stuff before we go the tie-her-down method. I know...that's the biggest point of all. But I want to get the endo's opinion as to how critical all the numbers are at this stage (remember she's not yet on insulin).

Quick background: she was in a TrialNet study to see if certain antibodies are predictors of Type 1. she tested positive and then was moved into the next phase w/ a glucose tolerance test. that's where she was declared a type 1 (between the results from phase 1 & phase 2).

We know that it's just a matter of time for the honeymoon phase to be over, but part of us is thinking if it's even a whole year away, why strongarm her into it now?? Once on insulin, we know there is no turning back and we definitely would do everything physically possible to get with the program. GOT THAT!

Anyway, since yesterday I've been trying desperately to find a mental health professional who deals w/ chronic diseases but I have yet to pinpoint one. Working on that and getting a response from the endo. We're also desperately trying to find a research study that will take a 6 yo in the early stage (i.e., a study that is trying to determine the effectiveness of certain meds in delaying full-fledge onset).

I may not be in touch for a few days, but please know that I try to lurk between screaming fits from my toddler.

I'm not trying to be rude, here, please don't think that I am, but most of us have lived this disease for a while and realize some of the traps and pitfalls a person with D can fall into and we don't want that to happen with you guys. I don't think you are getting what we are saying. If she in fact has type 1 diabetes (and it sounds like she does and they caught it very early through TrialNet) then testing will be essential for her to do many times every single day for the rest of her life. If you let her opt out now, she will think there is a choice and will probably opt out later. Trust me, you do not want to go there. Many of us still battle with our kids to get them to test when they are supposed to and our kids already know there is no option. Think of how difficult it would be to get them to test if they had been given the option at diagnosis.

In my mind, this is a routine you need to establish now, regardless of whether or not she is on insulin. You may not have to do 8 BG tests per day right now, but you will probably get there eventually. The honeymoon may stretch out for months or a year, or it may last two weeks. For now she needs to be doing the testing that her endo has prescribed. If the doctor says she needs to test 4 times per day, then that is what she needs to be doing, without fail.

I agree that there is no point in going overboard at this point. You don't want to force your child to test more times per day than is necessary. I get that. But if your endo thinks it is necessary to test morning, bedtime and 2 hours after each meal, then this needs to happen. In these early stages fasting BG and post-prandial numbers give the best indication of if insulin is needed and if so, which kind of insulin is needed. You won't know this unless she tests.

So while I think you are smart to speak with your endo about this, I also urge you to follow his instructions with regard to testing. Trust me, it will pay off in the long run.

Again, all the best to you right now! This is a rough time.:cwds:

[Hollyb]

This is actually one of the questions I have about these "early at risk" studies. I guess we don't know for sure that catching it "early" is going to make much difference in the long run. And one thing I know with my son (who is obviously much older) is that there was absolutely no doubt, in his mind or ours, that the treatment he was given was critical -- he KNEW how awful he felt before diagnosis, and how quickly he felt better, and I believe that has encouraged his cooperation with treatment. I'm picturing telling a teen who feels fine and doesn't actually need insulin that he needs to test 4 X a day, restrict his diet, or whatever, because he has "pre-diabetes" and I think it would be a rough go.

My older sons were just invited to participate in the TrialNet study. One said to me, "well if I turn out to be at risk what does that mean? That I spend the next 10 years worrying every time I feel crummy that I'm getting diabetes?" It's a fair question.

Sorry to go a bit off topic, but I do think there's a big psychological difference between forcing your child to take a treatment you know is saving her life, and forcing a child to take a treatment that is a form of "watchful waiting." I'm not surprised dmama is finding it very tough -- I know I would.

[madde]

Hi Everyone,

Just wanted to pop-in to let you know that I am so thankful for all the responses. This is a WONDERFUL board.

I am juggling just too many balls right now and burning the candle at both ends, so I'm not able to give the kind of reply that I want to, but know that I am taking notes and trying to chip away at stuff before we go the tie-her-down method. I know...that's the biggest point of all. But I want to get the endo's opinion as to how critical all the numbers are at this stage (remember she's not yet on insulin).

Quick background: she was in a TrialNet study to see if certain antibodies are predictors of Type 1. she tested positive and then was moved into the next phase w/ a glucose tolerance test. that's where she was declared a type 1 (between the results from phase 1 & phase 2).

We know that it's just a matter of time for the honeymoon phase to be over, but part of us is thinking if it's even a whole year away, why strongarm her into it now?? Once on insulin, we know there is no turning back and we definitely would do everything physically possible to get with the program. GOT THAT!

Anyway, since yesterday I've been trying desperately to find a mental health professional who deals w/ chronic diseases but I have yet to pinpoint one. Working on that and getting a response from the endo. We're also desperately trying to find a research study that will take a 6 yo in the early stage (i.e., a study that is trying to determine the effectiveness of certain meds in delaying full-fledge onset).

I may not be in touch for a few days, but please know that I try to lurk between screaming fits from my toddler.

My concern here is that if you don't start testing now, how will you know when her honeymoon is ending. You need the results of bg testing NOW to see when her bs numbers are becoming more and more elevated. This will prevent her from developing ketones which could lead to diabetic-ketoacidosis, which is life threatening. There really is no question of should I wait in regards to bs testing. It really needs to start now.

I'm writing this with concern, and hope it doesn't come across any other way.:)

We, on this board, know how difficult of a situation this is. But the sooner she realizes this is what HAS TO BE DONE, the sooner she will begin to accept it. And yes, you may need help from family, doctors, counselors, whatever it takes. Be strong and don't waiver. Hang in there, and were here for you.

Keep us posted when possible.

[wendyc]

Where are you located? Maybe someone here on the board can suggest a therapist for you...

[Ivan's Mum]

I know you've had a bunch of messages but... never appoligise (sp!) you don't want to do it, she doesn't want it done and that's nobodies fault. Tell her either she does it or you do it but it's happening.

If she needs another strong will six year old to talk to send her my way and the sooner you can find some 'social' group with D's in it the better you'll all feel as she'll see other kids doing it and just get on with it.

If i recall, I had to very aggresive in my approach in the beginning, firm was an understatement. Get hubby on the same page and remember she doesn't understand it, at this age you're there to protect them from themselves.

You will progress onto injections shortly so get this struggle under your belt, there will be another one around the corner shortly and once she's on injections, you can't flip a coin to see if you're having an injection today.

Good luck and we're all here when you need us.

[Mama Belle]

If she needs another strong will six year old to talk to send her my way and the sooner you can find some 'social' group with D's in it the better you'll all feel as she'll see other kids doing it and just get on with it.

Ditto. I know my daughter is older, but she has a lot of experience with this disease and a lot of empathy for people who are newly diagnosed. If you think talking to another kid might help her, I know my daughter would be happy to chat with her. PM (personal message) me if you are interested in this.

[Charmed7]

I don't have enough time to read all the comments, so I apologize in advance if any of this has already been suggested.

Unfortunately, you know your daughter better than anyone, so these suggestions may not work for her, but I thought I would put them out there anyways, and comment how it helped my son who was diagnosed at 4.

-Have her meet a fellow diabetic. I had a friend of a friend come over with her daughter who was a year older. They played for a little bit while the adults talked (b/c we had a million questions so it helped us too) and then we brought them together to check their sugars and have a snack together.

-Play the guessing game. Everyone guess what her sugars are, and who ever is closest gets a prize of some sort.

-Get a plush animal and label it a special diabetic buddy. She can even pretend to check the animal's sugar. My son became very attached to a TY Dog. He would hold it and talk to it while we did tests and shots.

-Get her talking. I always try to remember I am his mom and he won't talk to me like he would his grandparent or aunt. Try to get someone your daughter is close to, to help. Maybe she has some worries of her own and can't verbalize them to you.

And just a side note, remember she feels your vibes and maybe can't understand them. I took my son to a psychologist and he explained it to me like this. I come home from a bad day at work, and my face shows exhaustion and frustration. My son sees me come home and can't understand my body language or facial expressions. Since his world is surrounded by diabetes during this period, he can mistake it for something really bad about his health. He is too young to say anything, and sort out those thoughts. It's worth looking into different tools you can use to help children sort those thoughts out. You can role play, color, write in a diary...what ever she would be receptive to.

Good luck, I hope things work out ok.

Charmed

[3js]

-Play the guessing game. Everyone guess what her sugars are, and who ever is closest gets a prize of some sort.

What a great idea:)

[dmama]

Hi again, Everyone -

My husband and I decided that trying to work around her resistance was only adding to our frustration - meaning our mental/emotional burn-out. And if we were to be completely torched, then we would not be effective in helping her through all of it.

So, 2 nights ago we began holding her down. She has put up a valiant physical and verbal fight, but we at least are getting numbers out of her. Of course, immediately afterwards she is totally fine.

I have to run now to tend to my younger one, but thanks to all who have shared insights, encouragements, and pm's. I'll be online later sometime.

[Mama2H]

((((hugs)))) We all know how hard it is, just know that once this is over things will get better. Stay strong, she will figure out that this is just something that must be done.

[sanfam93]

Well, I hope it gets better for you. Is she type1 or 2 If type 1 the shots will become your problem and the finger pokes will be easy, just understand that burned out or not we need to get it done. I hope in time our kids will understand.

[Nancy in VA]

Hi again, Everyone -

My husband and I decided that trying to work around her resistance was only adding to our frustration - meaning our mental/emotional burn-out. And if we were to be completely torched, then we would not be effective in helping her through all of it.

So, 2 nights ago we began holding her down. She has put up a valiant physical and verbal fight, but we at least are getting numbers out of her. Of course, immediately afterwards she is totally fine.

I have to run now to tend to my younger one, but thanks to all who have shared insights, encouragements, and pm's. I'll be online later sometime.

It will get better. We used to have to hold down our 2-year old to give injections - it took both of us. But it gradually got better and by the time we moved to pumping, she allowed us to just grab her arm and jab it without a peep (And hardly stopping what she was doing to notice)

It will get easier. I would think the "fear" of pain for her is much greater than the pain itself and she is working herself up so much that it is probably hurting her more than it actually does.

[Mary Lou]

Hi again, Everyone -

My husband and I decided that trying to work around her resistance was only adding to our frustration - meaning our mental/emotional burn-out. And if we were to be completely torched, then we would not be effective in helping her through all of it.

So, 2 nights ago we began holding her down. She has put up a valiant physical and verbal fight, but we at least are getting numbers out of her. Of course, immediately afterwards she is totally fine.

I have to run now to tend to my younger one, but thanks to all who have shared insights, encouragements, and pm's. I'll be online later sometime.

I hope that a few times of this has resulted in her being more cooperative. I know how hard this is. Stay strong and know that many people here are rooting for you.