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ADHD/ODD child just diagnosed with Ty1.

Discussion in 'Introductions' started by kat mitchell, Sep 29, 2014.

  1. kat mitchell

    kat mitchell New Member

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    Hello everyone. My 6 yr old son, Jamie was just diagnosed (2 weeks ago) with Type 1 Diabetes. I still feel like I'm in a tailspin trying to make sure everyone whom my son is around knows what to look for, what to do, what he can or cant have, so on and so forth. We have only been home from the hospital for a week, (6 days in Ochsners) and the anger is setting in with him. It gets bad, like throwing things, punching, kicking, screaming, refusing to let the afterschool center check his Blood Sugar all because he has to stop doing whatever he was doing to get his sugar checked before snack time. This doesn't happen every day, but it worries me because he is acting out like he was before he was on his ADHD/ODD medication.
    The Endo assured me the insulin isn't affecting the other medications, and that he is going thru the angry phase. Im not sure I even know enough about all of this to make it easier for him to understand. Does anyone have any suggestions? He is a super smart little boy who understands more than most his age, (He qualified for the gifted program in his second month of Kindergarten with scores higher than the national average of those who make it in.) and he does well with taking his shots and getting his sugars tested and looks with me for the Total Carbohydrates on the back of everything. I just feel so bad because I don't know what to say to him to help him understand this better. I told him his blood was sick when we were in the hospital because he didn't know why we were in there. Any insight or advise to help me help my son would be a God send right now. My husband and I are separated and I have 2 jobs and I'm raising 3 kids (6, 8 & 9 yrs old) pretty much on my own, so I don't always think about stuff at the opportune time...like making it to the library! lol!


    Oh, also...does anyone know of any zero carb snacks that are "kid tested and approved"? Jamie has been eating peperoni slices rolled up with a cheese stick in a lettuce leaf. Well, he eats 2 of them for his AM snack at school since he went back last week. All I see when I google stuff is LOW carb, but it has to be NO carb.

    Thanks!
     
  2. MomofSweetOne

    MomofSweetOne Approved members

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    I'm so sorry you're going through this. We were told at diagnosis that we would hit New Normal in two weeks. At the two week mark, my daughter hit the angry stage and was screaming at me that she wanted a mom who was like her, that she didn't fit in, etc. It was awful. Even now I'm fighting tears remembering it. I remember thinking that I refuse to accept this as New Normal. It DOES get better. My daughter is doing well. She's had incredible opportunities she wouldn't have had without diabetes, and we've made wonderful friends for the same reason. We'd take a cure in a heartbeat, though.

    With him being so extremely bright, I would read him books that are beyond Rufus to explain what has happened. (Did you get Rufus and the Bag of Hope in the hospital? If not, you can call JDRF and ask for one. I'll warn you, though, our Rufus has quite the personality as the negative diabetes emotions came through him for a long time. He's pretty ornery, that bear. I despised him until the day my daughter announced Rufus was asking to talk to the psychiatrist because I was treating him like diabetes and wanting him to leave. That day Rufus and I called a truce. Now he sometimes writes me Thank You notes!) I read Think Like A Pancreas to my just-turned 11 year old, and she liked hearing and learning the information. We took Gary's T1U classes when she was 12, and she left saying she wanted to know her diabetes as well as Gary knows his. I think giving her the information I was learning gave her control over an uncontrollable circumstance. I felt vulnerable until I read Think, not knowing how the nurses were making the decisions about dosing, and wanting to be able to care for my daughter myself. She may not have been analyzing data, but she at least knew as much as she wanted of what I was learning. Even now, she gets upset if I learn tips or insights from here and forget to tell her about them.

    Did your team really say zero carb snacks? Standard is usually 5-10 for a newly diagnosed kiddo. We did lots of omelets in the early days. People have mixed opinions on this, but I let my daughter have omelets when she asked for them early on as she could have them as a meal without a shot if she didn't need a correction. It didn't last long; she adjusted to the shots and was tired of omelets, but in those early days, it gave her some control and normality.

    Did your team tell you that out-of-range BGs can really affect behavior? If your son already has additional issues, trying to keep him in range as much as possible would probably alleviate some behaviors. I can tell my daughter is affected once she hits about 170. By 200, she's usually quiet and withdrawn. Other kids act out.

    Did your team talk with you about a continuous glucose monitor (CGM)? If your insurance will cover, it's a game changer in diabetes management. I would HIGHLY recommend it. I wish we'd come home from the hospital with one.
     
  3. wilf

    wilf Approved members

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    You want to get yourself a Type 1 D reference book. I'd recommend Type 1 Diabetes by Ragnar Hanas. It is an accessible and very helpful resource for the many questions you will have in the weeks and months ahead.

    In the meantime veggies are carb free - so snacks that could work for him are cucumber slices, carrot sticks, celery sticks, etc. Cheese strings are good, as are pepperoni sticks. Also any kind of nuts.

    Good luck with this, and come join us in the Parents of Type 1 Children forum.. :)
     
  4. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    You assume that he doesn't want to have his bg checked at after school because he's being disturbed, maybe you are missing the more obvious possibility that it hurts? What lancer are they using and how well trained are they on poking without hurting?

    Throwing things, punching, hitting... that's bound to cause real problems for him at after school care if it continues. I'd focus on that, if I were in your shoes. Perhaps we can suggest a lancer that hurts less and techniques that minimize pain.
     
  5. sszyszkiewicz

    sszyszkiewicz Approved members

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    I do not have specific answers to your questions, but I wanted to say I am sorry for your child's diagnosis.

    Wow...six days in the hospital :( Sounds rough!

    We were in for five at diagnosis. Did you get any sort of training there? Did they have someone talk to your son about what happened? They did that for my son. He is older. I think it helped somewhat.

    The two books mentioned already are good, but for newly diagnosed Peter Chase's "understanding diabetes" also known as the "Pink Panther Book" really is written for the newly diagnosed. I can send you mine (no charge) if you promise to share it again with a new parent who appears on these boards when you are done with it. You have lots of new things to get used to, but it seems you are off and running.

    As MomofSweetOne mentioned, look into the Dexcom G4 continuous glucose monitor (CGM). It helps tremendously and has the potential of reducing the # of fingersticks a bit. The real win is the insight it gives into your sons glucose levels, and with diabetes, information is power.

    Are you all set with care at school? There are lots of people here who have tons of experience with care plans and dealing with school systems.
    Do you have your emergency glucagon kit at home and at school?

    D means business and the best way to deal with D is to learn learn learn.

    So again, welcome, sorry you have to be here, but welcome.
     
  6. kat mitchell

    kat mitchell New Member

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    Thank you all for your responses. Im going to try to answer everyone's questions, but first, let me give you a quick run down.

    Jamie was having accidents at night. Started the 2nd week of August right after school started. It first started with 1 at night, then it was up to 6-8 times a night. In the second week of school, I asked the VP about the rule of the water fountain. I also asked the after school center to keep an eye on his fluid intake to let me know if he was drinking a lot. They have 2 coolers and its free reign to the kids.
    By the 3rd week in at his monthly doc app for his ADHD/ODD, they noticed he lost 2 pounds in the last month. Said it wasn't a huge concern, but to keep an eye on it. In the 4th week, I called his pediatricians office for some insight because he was still having accidents. They told me to watch how much he drinks before bed, and that's it. By this time, I was noticing ribs and spine were sticking out a little more than normal, even though he eats A LOT. In the 5th week, I asked his counselor about his weight loss and accidents. Everybody just chalked it up to the heat (south MS) and a growth spurt, or he was acting out about his dad and I. The next Monday I had to leave work early because the school called and said Jamie just wasn't feeling well. His teacher said all he wanted to do was lay his head down and then asked me if he had a bladder infection because he was asking to go to the restroom every 30 minutes and he was complaining of a tummy ache. Thinking he just had a bug, we went home and he slept for about 4 hours.

    The next morning I was telling one of the Project Managers at my job about Jamie wanting to sleep with me and I laid 2 puppy pee-pee pads down on my bed and a towel incase he had an accident. He then asked me if I have had him checked to be Diabetic. I said no, but quickly started making phone calls. My Ex met up with his sister, who is Diabetic, and went up to the school. When they checked him, his BS level was 514. Went to the hospital, ran some tests, said he was in DKA and they were transferring him to Ochsner main in New Orleans. He had lost over 5 pounds in 6 weeks and his A1C was 12. The Endo came in the first full day we were there, then the dietician. I was still in shock and didn't want to be there, didn't want to have myself and 3 others have to hold him down every time they needed more blood. I just wanted to go home. I tried to listen as best as possible. Actually when the Endo doc came back the next day she said she was going to quiz me, and said, "Wow, you were listening yesterday." I was trying!

    I am going to look into the books mentioned above, and actually, they did give us some type of Pink Panther book that I completely forgot about. I have already text my Ex and asked him to bring all the papers and books they gave us at the hospital with him today so when he comes to get the kids this afternoon, I can look at them.
    Nobody really talked to him, it was just them coming in and talking to us to push for us to understand it and take it all in before we left. They did tell us that he has a high tolerance to high blood sugar because the only indication we got while in the hospital that his levels were greater than 500 was that he would start to take a lot of sips of water. When he started this I would call the nurse and we would both check it and every time it was "HI" or "+500"
    The second night there, I started talking to Jamie about what happened to his Pancreas and what carbs are and how many he can have per meal (60g), so while im fixing his dinner he will help me add the carbs up or he will ask me how many carb are in something when he is wanting it.

    As for the diet, here is his orders:
    1 unit for 30g for breakfast and lunch
    1 unit for 45g for dinner

    Target Factor of 120 for breakfast and lunch with a control factor of 125
    Target Factor of 150 for dinner and same control factor.
    He takes Novolog and 6 units of Levmir before bed.

    His class gets a morning snack and its up to whichever kids name is written on the calendar for that day on who brings it, so there is no way of knowing what snack will be that day. Because his snack is about one hour before lunch, the Endo doc said it needed to be a zero carb snack so hes not getting 2 shots in one hour. He does get a 15g snack at the after school center and gets a shot for that. We have been doing peperoni slices with cheese rolled up in a big lettuce leaf. Today we changed it to roast beef. The school nurse checks him and gives him his shots before lunch. I feel comfortable with her because her husband is diabetic and she gives him his shots. His sugar levels went over 500 numerous times while at the hospital. As of today, either we finally have a dosage calculation close to what he needs or he is in the "honeymoon phase". His sugar levels have been between 80-170 which is much better than what it was when we left the hospital.

    Jamie has numerous IEPs and a 504 Plan for his ADHD/ODD and his speech so I am familiar with all of that. I had a conference with the Principle, his teacher, the school nurse and the Nurse Supervisor for the District. They handed out information and what to look for with Hi/Low levels to everyone including the Bus Driver. The After school center Manager wasn't familiar with what to look for or insulin shots, so she went up to the hospital and met with a friend who is a nurse for better understanding. She calls me every day to go over the calculations before she may have to give him a shot.

    As for it being painful. My son has a high tolerance for pain. I think the reason he over reacts with getting blood taken, getting IVs, or even the stickers on the chest is because he is fearing the unknown.
    Funny story: he was freaking out about having to get his sugar tested when we first got to the hospital and he finally picked a finger she could poke, laid his head back and covered his face with his other arm and started said "oh this is going to hurt! Just be brave Jamie, just be brave" then he said loudly "Ouch!" when she poked his finger, then said "well that didn't hurt!" My sister who was two days away from her due date almost peed on herself because she was laughing so hard!
    The shots (pen looking things) and the tester don't bother him. Our second day home from the hospital he asked me if he can check his own sugar and has no problem with it. I try to get him to pick different fingers but he always uses the same finger for a whole day. He helps with his shots too. He wipes the spots he wants them in, and once the insulin is inserted, he will count to 10 while I hold it in there.

    I know we have some adjusting to do at home too. I learned yesterday that he cant just go in the house and start playing video games because he gets mad when he has to stop for testing before dinner. He yelled at me that he hated Diabetes and he hated me. Its just something he has to accept, as we all do, and to not have fits like that. Told him he can talk to me, or can go beat up his pillow if he wanted, but he could not put his hands or feet on anyone.

    As for any type of pumps, the Endo doc said she wanted to wait a little bit for my Ex and I to get used to counting carbs and doing the calculations before just going to a pump, that way we know what we are doing if we have to go back to using the shots after a pump.

    Jamie has asked about having one, and I am hoping he gets switched to one before Christmas.

    Speaking of holidays...Halloween is coming up and im thinking I want to just skip it this year. I don't know what to do about the candy over load that is about to happen! What are some things yall do?

    Thanks again for all the advise!

    Kat
     
  7. misscaitp

    misscaitp Approved members

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    I know it is tempting to skip Halloween, but it is quite possible that it makes him angry and he may feel that it is diabetes fault for missing what kids consider the best holiday of the year. You could either ration the candy out, setting aside ground rules before Halloween starts and having the rules posted on the fridge as a reminder: "You can pick one piece of candy to have with dinner or with lunch". You could also do a trade in system, where he can trade in his candy for a toy he wants or $1 per pound of candy.

    Certain types of candy actually work well for lows, particularly smarties, sweet tarts, 1 air head, skittles, or star bursts--so you could set aside these candies to avoid him getting tired of juice or glucotabs.

    In the end it is up to you, and halloween right after diagnosis can be overwhelming. But if you do decide to skip halloween, and its not something you regularly skip, I would try to come up with a way to explain it without making diabetes seem like the reason and I would replace it with another fun special activity.
     
  8. sszyszkiewicz

    sszyszkiewicz Approved members

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    Wow that was some story! Thanks for taking the time to write it and share.

    Dive into those books when you get a chance. It will like reading the rules to the game after you have played it a while, but will be very helpful.

    This will be our first Halloween since diagnosis and my son (12) has said he doesn't want to trick or treat, which is a bummer. Around here the motto was "enough candy until Easter!" But this year he just wants to get dressed up and hand candy out to the neighborhood kids, so we will go with that.

    I might add that I think you are doing really well.
     
    Last edited: Oct 1, 2014
  9. vgage03

    vgage03 Approved members

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    I am sorry your son is having such a hard time. He is grieving and anger is part of the grieving process which only time can heal. eventually he will get to acceptance, although I don't think they ever stop hating diabetes. I agree that you should not skip halloween that would depress most kids. I noticed they have you on sliding scale doses. So you give a certain amount of units for a set amount of carbs plus a set amount of units for something like every 50 points over 150. I would highly suggest changing this as soon as your next appointment to carb counting. So instead he would get something like 1 unit for every 15 carbs eaten and still the extra for bs correction. This makes life with diabetes alot more "normal". He can eat however many carbs he wants or I know sometimes its very difficult to get them to eat the whole 45 carbs and with this method he wouldn't have to. One thing I also do which is not what the doc would tell you is I do insulin after he eats. When he was first diagnosed at 3 years old I would do his insulin prior to eating then he wouldn't want to finish eating so then I would panic and had to find something else and force him to eat.
    I would also make him switch fingers because that finger is going to be so calused and full of holes in no time. All of my sons fingers have visible hole marks after all these years. I also agree with your doc on waiting to switch to the pump and my doc does the same thing. In fact they make you start with syringes then you can move to the pen. Don't get too eager to switch because it is important to learn how to control this on your own without a machine (that can be confusing) so one step at a time. There may also be a time when your pump fails and you will have to switch back to syringes/pen until a new one can get to you. If you don't spend much time with the syringes and carb counting/math you might not remember it as easy two years down the road. We used syringes for a year then switched to pens for 4 years before starting the pump.
    As far as zero carb snacks my son likes jerky or slim jims. Also veggies, sugar free jello, lunch meat or any meat, cheese, eggs. Pickles are a good one, olives, nuts. You can buy jello and pickles in individual serving cups which would be nice to send to school for a snack. Sugar free popsicles are great for at home or if the school is willing to store them. Make homemade ones out of crystal light is an easy option.
    I too struggled with having my son diagnosed. We went to the doctor after he was drinking alot, urinating and vomitting after chugging a large glass of water. The PA he seen told us he had the stomach flu and sent us on our way. He had lost weight just like your son you could see his ribs and his eyes were sunken in with dark circles around them. I limited his fluid intake since he was vomitting, so I would catch him sneaking drinks. Once I found him in the closet just downing a glass of water. He started talking to someone who wasn't there. My other son was only a baby and he was yelling at someone to get away from his brother. Finally we took him to the ER where his bs was in the 600s. We got transfered to the childrens hospital and stayed there for a week. The hardest part of all this for me at least is the 3 a.m. bs checks. I couldn't get insurance to cover the CGM so for now I'm suffering through it. My son is now 11 years old so 8 years he's had this on September 10th.
    Good luck!
     
  10. Ali

    Ali Approved members

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    So sorry. Sounds like you and your son and ex have been down a rough road. Just a note on pain threshold, no matter how great, your kiddo will be doing all this for the rest of his life, so find the thinnest shortest lancers for BG tests. Just ask the Pharmacy what BG device has the thinnest shortest needle and use that and get your Doc to write a prescription for that device. Also Ask the Doc to prescribe the shortest sharpest needle for his syringes. Make sure you are injecting into a nice fatty area. I suspect your insurance covers going to meet a diabetes nurse, go and get as much help as you can. If you do not like that person or you do not like your endo ask to get this changed, you will need someone you can talk to on a regular basis for at least a year. Also see if there are any support groups for T1. Ask you Clinic or contact JDRF, they have tons of resources. Please reach out in your community. On your computer just Type in your City name and T1 and most of the resources I have mentioned will pop up. Good Luck. ali
     
  11. kat mitchell

    kat mitchell New Member

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    Thank you everyone for your advise.

    As of right now, the plan is to go trick or treating, keep some of the candy for low sugar levels, and bring the rest to a hospital for all the kids who are in the hospital who couldn't trick or treat. Maybe the doctors will let them have it.

    Jamie was given the book "Rufus" by the school counselor so I'm going to see about getting him a Rufus of his own. He really like that book.

    Just taking it one day at a time, and trying really hard not to stress over it!

    Thank you all again!
    Kat
     
  12. Christopher

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    Don't forget to let him eat some of the candy too....:smile:

    Personally, having him give up his "hard-earned" candy, to me, just makes it seem like he is not supposed to have it. What I have done in the past is this: She goes trick or treating, comes home and dumps out all the candy on the floor. Picks out what she wants to eat right now, seperates the stuff she doesn't want or can't have due to allergies, and puts the rest aside to eat later. Then, she will just add a piece or two to meals later in the week and just carbs for them.

    Each family has their own way of handling this time of year and there is no right or wrong way. Just sharing my experiences.
     
    Last edited: Oct 8, 2014
  13. Sarah Maddie's Mom

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    You have to do what you believe best, but just so you know, the vast majority of people who participate on CWD, people who are without question some of the most informed, dedicated and involved D parents in existence, believe that D kids should be permitted to participate in all normal activities that the kid/family engaged in prior to dx. Yes, most of us place some limits on the quantity or the timing of the halloween treats but very few make their kids surrender their candy.
     
  14. CJA

    CJA New Member

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    Wow!, really good advice. Wish I would have had this site when my son was fist diagnosed.
     

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