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It's official..I have screwed up my little girl

Discussion in 'Parents of Children with Type 1' started by Mojo's mommy, Jan 7, 2008.

  1. Mojo's mommy

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    Hi Everyone..Happy New Year

    Not sure if this is a rant, a vent or just a plain old I am at my wits end...

    Some of you know of the troubles I have been having with Courtney and her tummy troubles..Well, they are still going on. Since I was last on here we have been to doctors , emergency room and now I guess it is onto a Phycologist next!
    Before Christmas break it got really bad at school to the point if Court was low and I mean low lows she flat out would refuse to put anything in her mouth at all. I was told to take her home as it was now a safety issue.

    Over the 2 weeks they were off there were a few issues but minor, same old same old, my tummy hurts that sort of thing. I was hoping come today that whatever was going on would be in the past...no such luck.

    So I E-mailed the educator at Childrens to try to get some help, I am out of ideas..I basically got from the reply that because I have been so diligent in her care that this is the resulting turmoil..I take too good of care of her

    Maybe I am just simply depleted so I am going to attatch my original message as well as the reply for someone removed from the situation to get a better side of it possibly..

    The part that bothers me most I think is the "backing off on the diabetes care" how the heck would that possibly happen???

    Hi Cristina,

    Happy New year and all that Jazz! Hope your Holidays were happy.

    I am in need of some help, advice and support. If this is not something you can advise me on possibly you could direct me to someone that could.

    Courtney is having some major issues at school regarding food. Before Christmas break it had definitely hit a peak. She flat out refuses to eat at school and this includes treating a low. On her last day I was instructed to take her home .

    I was really hoping that whatever it was that was bothering her would subside in the 2 week winter Holiday but it seems to still be lingering. I just received a call from her SEA and she did not want to eat her recess snack. Fortunately , she was not low and could get away with it for now.I am going to be bringing her home for lunch to ensure she eats for now .

    It definitely appears to be an anxiety and I have approached it from all possible sides but I now do not know what to do. She constantly complains of tummy pain and that too has been investigated from several areas with everything coming back normal. It is disrupting everyday life on an everyday basis and it is further complicated by her Diabetes. It is far too dangerous to allow it to continue.

    Any ideas as to what I can do

    Thanks very much
    Teri

    Hi Teri
    Wow, lots of issues. It sounds like Courtney really needs to be seeing a psychologist. I will forward this message to Jana, our counsellor as well, and maybe she can give you some suggestions.

    first of all-in terms of safety...you need to make sure that Courtney's basal rate while at school is set properly, so that it is OK for her to not eat at school, and make sure that the school knows this is OK. She is on a pump, so she shouldn't have to eat. Forcing her to eat is definitely going to make this situation worse-in fact, that's probably the root cause. Find something that can easily be used to treat lows (honey, gel) but don't worry about the food.

    Secondly, you will need to back off on the diabetes management, and focus on other things in Courtney's life. This is Courtney's way of trying to get some control. I know it will be hard for you, as you have always been very diligent about keeping things in order, and you've done a great job. Unfortunately, this often backfires. you will have to find some balance and not make diabetes such a 'big deal' and focus on other things. You will also have to keep your anxiety down too, as it will contribute to hers. I've seen this happen before.
    I don't know if you have taken Courtney to a psychologist before, but I'll ask Jana to call you and see what else she suggests. Hang in there! Cristina
     
  2. Val

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    I don't really have anything to offer except <<<hugs>>>> This must be very frustrating. Simon is only 3 1/2 & so far (knock wood) we haven't ran into any problems like this. My thoughts will be with you & I hope you are able to resolve this as it must be very stressful. I am sure others here with older kids will be able to offer some great advice.
     
  3. Boo

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    Teri,

    I am very sorry that you are experiencing these issues right now. It seems like she is a little young for this, (I might expect it more of a teen).

    If all possible physical causes have been ruled out, my gut was telling me it was a control issue (before I read the educators comment which seems to think the same). I still wouldn't completely rule out a physical issue. You know your child best. What does your gut tell you?

    If it is a control issue, I think some kind of counseling would be in order so as to prevent future eating disorders (Sometimes I feel like D unfairly sets them up for future food issues no matter their personality).

    Why is she having scheduled snacks at school if she is pumping?

    I have, on occasion, felt as though my son's endo thinks we go overboard in our attempts to control D. I think they have a lot of long term experience and see things like this (and burnout) happen over time. I understand that there needs to be a healthy balance. I have my son check BG on average 7 times a day. Well, 5 during the day, and then I test at 11 pm and 3 am. I'd often like it to be more, but given his age I usually refrain from asking him to do it more often (unless there are special circumstances such as soccer games, etc....and if he were younger, more BG checks might be warranted). It would be a very hard thing for me to back off more at this point.

    My heart goes out to you (and Courtney). This must be very frustrating.
     
  4. Mojo's mommy

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    Hi Beth,

    My gut used to tell me there was a physical problem, but with the amount of time that has lapsed , the testing that has occured, everything except the really invasive stuff and I think everyone telling me it is phycological I guess I have just convinced myself to come to terms with it.

    I don't over test her as she is on a CGMS and I don't force her to eat any more than if she was not D. My whole thing is that I don't want to reinforce the not eating issue because everyone needs to eat for good health in general. The eating for lows is a whole other issue.When the school calls and her BS is 3.1 with 1 unit iob and she refuses to take anything and I am 20 minutes away I almost had a complee breakdown.
    That was the last day of school before break...

    I have tried being nice, being firm, being understanding, accomadating,angry, frightened and anything else you can think up...nothing works!
     
  5. Gwyn

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    Teri,

    It's certainly NOT official--you're going to get the help you need and get back on track.

    Keep your chin up!
     
  6. Tamara Gamble

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    Teri, I don't know what to say except for that this particular nurse seems pretty judgemental about your behavior. Who decides what is just enough or too much with diabetes care? No child with or without D can go the day without eating. Not acceptable.

    My daughter is much older than yours and does not have diabetes. I do remember that she refused to eat lunches sent from home, she would only eat school food or would starve herself and I mean all day long all week long. Yes she is that stuborn. It certainly was a control issue without question but about what imparticular? Because she didn't want lunch sent from home? Give me a break. Girls can be extreme.

    If this is all of your fault how come she will eat for you and not at school? Perhapse that is where the problem lies. I don't know what will come of all of this but don't let this nurse dictate your future. Call the psychologist, schedule the appt, figure out what on earth is going on and fix the problem. You are still Courtney's mom and you get to decide how to proceed. Trust your instincts. You may be doing absolutely nothing wrong but Courtney is having some issues with this disease and maybe you'll need to be creative and change your approach. Hang in there. Move forward and say a little prayer. It'll all be okay!

    God Bless!

    Tami
     
  7. mom2kenny

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    is she on any othe meds? I have a friend who has a daughter that did the exact same thing. but she was on aderall for adhd. It gave her an ulcer, so every time she ate it hurt her stomach. They told her mom it was all in her head until she switced drs. He put her on previcid and she hasn't got any tummy troubles.(took her off the aderall)
     
  8. funnygrl

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    I had a LOT of stomach problems when I was in HS and everyone told me it was psychological for a year. It wouldn't get better though, no matter what. I ended up finally getting a referral to a pediatric gastroenterologist who ended up diagnosing me with reflux disease and gastroparesis. Once I started medication for those issues, things improved greatly.

    Is it just at school though? I couldn't eat at home or school.
     
  9. Ali

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    It is funny how differently people read things. I read the nurses comments as saying what a great job you have done but unfortunatley sometimes that brings on problems. Good luck sorting this all out. Ali
     
  10. wilf

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    I agree. Unless the nurse has intimate knowledge of this matter due to a detailed conversation with your daughter she is WAY out of line.

    There is clearly a problem. If your daughter is saying her tummy hurts, then that should be your starting point. I would assume she is being truthful, and that there is a physical reason for what is happening.

    Next, I would work with your daughter to determine and log in detail when her tummy is hurting and when not. Is it all day and night long, or only before meals, only during meals, only after meals etc? Is it only at school? You need to get as much info together along these lines as you can. Then look at your data together with your medical support and see if there's any patterns you can work with or explore..

    As for dealing with lows, will she drink juice?
     
  11. Mojo's mommy

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    Thanks to all for your replies!

    mom2kenny....she is on no other meds

    funnygirl..it is mailnly at school that she will not eat, once in a while she has a problem at home but rarely

    wilf...when Courtney decides she is having nothing it is a no go:( I have lots of options and none of them will tempt her..Thanks god for temp basal and small miracles...

    The educator from the hospital called later on this afternoon and said to lower her basal at school so that if she does not eat then we hopefully will not have a low to deal with. She also suggested backing right off on her care as in no talking about D, no special treatment, no arguing if she does not want to eat..etc..you get the picture.

    She said given her age it will not hurt her to run a bit high for a bit:eek: She will eventually decide that nobody is going to be making a big deal about it..

    Not sure if I'm buying it but at this point something needs to be done otherwise come a few years down the road I am going to have some major issues on my hands. I am also awaiting a call from the counsellor at Children's tomorrow, hopefully she can give me some direction
     
  12. Twinklet

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    I was reading your post and thought the behaviors sound exactly like my very strong-willed 6-year-old! I'm sure it is an age thing AND a control issue.

    I personally think it's OK to back off on D a little in this case. Of course you have to test, but try doing it only when necessary. I think kids get burned out and we've certainly had times already with my 10-year-old where she is just SO tired of the whole thing--all the talking about D, all the testing and so forth (and it's really bad here with 2 Type-A personality parents!).

    Our CDE told us we needed to back off when that happens, and she was right. We have had stretches of days where she ran a little higher than we like during the day to give her a break. Somedays we simply don't talk about D around her (which is hard). Some days we only test at meals and not in-between when she's feeling a lack of control. It's a balancing game and very difficult for us parents.

    Hang in there and do what you have to do to get through this time. It won't last forever! Please let us know what the psychologist says.
     
  13. czardoust

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    I see she worded this pretty sucky, but what I think she was trying to say was that she would like to see you emotionally take a step back and be able to see that the D is consuming your thoughts, and Courtney feeds off of the energy that you project. If it consumes you emotionally, it consumes her emotionally, because that is what being mother-child does, we're linked together like that. I dont think she was being so ignorant as to say "stop being so deligent and careful." When Kat was first dx'ed, my husband and me both went thru some tought times of when D consumed us, and Kat was depressed because of it. She needed to know from us that we had control of it, and that life did not revolve around it despite the fact that it would never go away. Its a balancing act.... its weird. Anyway, taking a step back from yourself, and looking at yourself. Looking at the entire picture from all sides, but away from it so your not emotionally involved, because that can blind you sometimes. ((((((time for an emotional hug,lol)))))
     
  14. caspi

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    This makes a lot of sense to me......

    Something else to consider, has she been tested for celiac?
     
  15. Abby-Dabby-Doo

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    Teri~
    That is outrageous, you have not screwed up your little girl!
    You need a break, you need someone else to help you out with her care. I think one of the best things to do is to hand over 1/2 to some of Courtney's care to Dad. Period. It will be hard at first, but you can do it. Obviously he needs some guidance, notes, advice, training, and what not before you start handing stuff over. But Teri, you need too.
    I'm not your neighbor, I don't know you personally, but I know you carry 99.9 % of the load regarding Courtney's D care. I care about you, I think your a WONDERFUL mother, and I want you to come to Vegas when we plan the trip.
    I'm thinking of you!!!
     
  16. Charmed7

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    I second this. My other thoughts are on your little girl. I read your post and I don't feel like I have any information on how she's feeling. I think you need to open up some dialogue and find out what she's thinking. At 6 going on 7, she may have something on her mind but not quite understand why it's bothering her. She may be having bullying problems at school, or she's going through an independance phase. And trust me, an independance phase for a D child can be completely different from non-D. I would create a safe place (I'm actually working on doing this for my son) and there you guys can color or play puzzles or whatever and just talk. The first couple of times she may not say anything, but you may be surprised after a few times. My son comes up with some things sometimes that blows me away. One time he said a kid calls him tomato face in school because his face is red in the heat. Another girl was asking to see his hands (they are dry) and she said, "Ewww old man hands. Don't touch me!" The teacher never told me, he never said anything, it just happened. And it took him some time, but eventually he got around to telling me. He also had ulcers in his stomach that would cause stomach problems, but it never prevented him from eating. We just stay away from acidic foods.

    (I just re-read my post and it's a little unorganized. I'm just feeling that way today. Hope you get something out of it. Good luck)

    Charmed.
     
  17. Lee

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    I agree with everyone, it could be psych. Seeing a counselor never hurts, whether it is a psych issue or not. If it is mainly happening at school, it could be that she doesn't want to feel like she isn't normal. My one question with that is when did this start? Around the time the new CGMS started sounding alarms? Just one theory to pull out of the air.

    However, I would not rule out a really tummy issue, if it happens sometimes at home also, then there could be something wrong. I would push for the more invasive stuff - I know it sucks, but so does making a child eat when her tummy hurts. And it sounds like she is saying MY TUMMY HURTS, not just refusing to eat. So let her know that you believe that her tummy hurts, that you are very worried about her and that the next round of tests will involve her having to go to sleep and have some stuff done while she is sleeping so it won't hurt. Let her know that right up front, and if it IS psych, she may decide that it is not worth it. But, she is saying she is in pain, and you believe her in your gut, just other people have convinced you that you may be wrong...take a few minutes and tune into the mommy gut again...listen to it and see what it says. Still go to counseling, but please, keep perusing the tummy ache.
     
  18. My_Dana

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    Some other ideas?

    This is s tough one.

    Here's a few things to consider along with everything else.

    - Any recent changes in food that you can think of (other than she won't eat at school)? Milk specifically has been shown to induce ADHD-like symptoms.
    - I recently discovered that kids can get parasites from swimming pools and other public things. And the symptoms can be all over the map. Tummy pain included as they usually setup in the intestines. They do make a kids parex that's easy to try. We did. Not sure it was our problem though.
    - Hiatal hernia - It is possible for the stomach to be push up into the esophagus (kinking it a bit) and causing things like difficulty swallowing, acid reflux. There is a "mechanical" maneuver that a local doc does on people suffering from such. It really does work. He has done little ones as well. He literally pushes in and down on the stomach area.
    - Could be some school/being different anxiety. Emphasize things that can reduce stress and anxiety. I have read that B vitamin deficiency in particular in children can be at the root of such issues. Try a good B complex vitamin. One of the B vitamins specifically is critical but I need to reference the book that has it...

    Hope some of this can help.
    Good luck and hang in there!
     
  19. EmmasMom

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    Hey Terri,

    I'm so sorry you're having to deal with this! I often worry about how Emma's will deal with all of it when she's older and has more control. But, we still have to do our best to keep her healthy and manage her D, it's not really optional!
    I do think you should continue to pursue her stomach pain if it seems legitimate, but if it's only happening at school it really may be anxiety.

    I had some similar issues at school when I was Courtney's age. There was a lot going on in my family at the time, (long story but my type 1 father had just passed away, we moved out of state, new school, etc.), and though I was fine and happy at home, I just couldn't deal with school. I had stomach pain every day, refused to eat, asked to go to the nurse constantly in hopes of being sent home. It was NOT anything I was doing intentionally to get attention or to gain control, I really was miserable there and I really felt sick. I just wanted to be at home with my family and there was no rational argument that was going to make me feel differently.
    It seems pretty sad looking back on it, but I think sometimes kids just get overwhelmed. It is one of the times in my childhood that I remember most vividly. The good news is that it didn't last very long!:cwds: My teacher was very patient, the school nurse was very understanding and I spent some time hanging out with the counselor every afternoon (we played board games in her office). My mom continued to walk me to my classroom everyday and reassure me that I would be fine, and eventually I was.

    I know it's not exactly the same thing, and I don't know if she's having issues other than eating... but it certainly reminded me of myself when I read your post. I never had any of those issues with school after that year.

    I can't even imagine how hard it was on my mother at the time, like she didn't have her own issues to deal with...:rolleyes: but she was patient and kind and that was exactly what I needed.

    Hang in there, this is totally not your fault!!
     
  20. carlysmom

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    I am new to the forum and only 7 months into D care for my 7 yr old Carly, but we have had some of these types of issues pop up already. First Carly was dx'd in the last two weeks of school last year so the majority of her first few weeks was home with me all day throughout the summer. Well she was feeling so badly at the beginning and I was so tired that we slept together so I could do all the checks easily and keep the fluids going round the clock. I did move her to her bed eventually but it wasn't long after the stomach pain started every night at bedtime. We worked on it and it slowed down some, but then when school started again she would complain in the mornings about stomach pain and again at bedtime on some nights. Like you I am not completely convinced that ALL stomach pain is psych, so we are getting everything checked to be safe. Something happened about two months ago that really helped me understand a bit more.
    The school called me because she wasn't able to finish her lunch due to stomach pain and they were afraid of lows. I told them to hold her in the nurses office and give her milk to make up any carbs needed. Thankfully this worked and she was ok. I went to pick her up that afternoon and after finding a bubbly bouncy little girl I said, " I guess you tummy is ok now" and she said "yeah it's better now, it was just in the lunchroom today." That struck me funny, the way she worded it, so I asked if something happened.
    It turns out that when she got in to lunch and unpacked her bag, she saw that I forgot to put her applesauce in and it was on the list of what she had to eat that day. She immeadiately went to the aide assigned to see that she eats all her food and told her she needed to go to the nurse right away (as she was told to do if anything happened,) and the stupid aide told her to sit down, that she needed to learn how to sit down and eat. A whole different rant,lol. Well then she couldn't eat because she was upset and didn't want to cry in front of everyone, but all she kept saying was that her stomach hurt. I straightened the whole thing out the next day and now Carly is in charge of her own lunch and does great. I watched for a while when she complained about stomach pain after that and I now know that alot of them are her way of saying something is upsetting me. It can be anything from I'm scared to sleep alone tonight, to I am sick of having diabetes. I still worry that she complains sometimes when nothing is wrong, but at least I know it's not as bad as I first thought. Hope this helps, even a little.
     

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