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I'm sorry to post here but I can post here because my nieces idiot parents would never come here.  Many of you have given me lots and lots of support over the years for my niece Madison and I really appreciate it.  Long story short we've been primary caregivers to her since she was 2.  There have been so many highs and lows along the last 6 1/2 years.  Madison is now 8 and she is a wonderful child.  I wish I could say the same about her parents!  I'm so frustrated with both of them at this point.  They never seem to put there child first.  I get it they hate each other but the bottom line is they have a child together and need to get it together!  Madison was diagnosed as a Type 1 diabetic last Christmas.  She has handled it like a pro!  It is a lot to deal with.  6 or more blood checks a day and at least 4 shots, more if you dare to give her a snack like ice cream!  It isn't like type 2 where you can control her sugar by diet.  Bottom line is you give insulin for every carb, period.  There are highs and lows and it is a lot to keep track of.  I strive to give her a well balanced diet and hope to keep her sugar level.  Well she is getting an insulin pump tomorrow.  Seems good but have heard good and bad.  My biggest fear is the lows, scary stuff!  Now add her parents into the mix and it could be life or death for her!  My BIL has full custody and her mother gets her every other weekend.  My BIL is very good about making sure she has her meds, goes to the doctor etc., not so good at keep her on a schedule.  Her mother says all the right things but then Madison will tell me she is always high at mommy's and has nothing but fast carbs so she crashes a lot.  One night dinner was 2 funnel cakes and that was 2 weeks after being diagnosed!  It isn't that she can't have that as long as you treat her for the carbs, the problem is without balancing her diet she will crash.  Madison told me one night she was still up at 12:30 and felt shaky so she tested her blood, 69.  She went in and woke up her mommy who told her to eat some carrots and never got out of bed and didn't check her sugar again until almost 11 the next morning.  So you would think her parents could at least get together on going to the dr and getting the pump....NOT.  Her mother wasn't going to go because according to her she didn't get enough notice to make arrangements.  She doesn't work!!!!!  She also can't drive because she lost her license.   Her father said he didn't care and it wasn't his problem.  Really?  Is he just going to send her for 3 days and not care if her mother knows how to work the pump?  So I did the only thing I could do, I offered to go pick her up and bring her and then take her home.  People think I'm crazy!  Maybe I am but I would do anything to make sure that her parents have the skills to take care of her.   I wish I could go to court and have her taken away from them both.  I will have to drive about 5 hours round trip but I will do it for Madison.  Why can't they be adults?  OK rant over and I'm sorry to vent.  Please say a prayer for me because that drive is going to be the longest trip of my life!   

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oh gosh!...Wish I knew how to fix this for you!  it does not seem right that a custodial parent who refuses to learn about an insulin pump with a minor could have custody of her!  I think pumps have an alarm if blood sugars get too low?  Does anyone know?....also, they really try and teach even young kids everything about the pump as parents won't always be there...like in school, sports etc.....Lin

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Heidi, I am so sorry for Madison. She sounds like the grown up in her home. Praying for you and Madison. My niece has type 1 too. Diagnosed when she was 2. It is pretty much constant care, and my niece gave up custody because she was more concerned with having fun. I understand your frustration.

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oh gosh!...Wish I knew how to fix this for you!  it does not seem right that a custodial parent who refuses to learn about an insulin pump with a minor could have custody of her!  I think pumps have an alarm if blood sugars get too low?  Does anyone know?....also, they really try and teach even young kids everything about the pump as parents won't always be there...like in school, sports etc.....Lin

Yes there is an alarm and this pump actually had a auto shut off when her sugar gets down to a certain amount which is determined by the doctor.  I'm not worried about my niece when she is feeling well, my worry always comes in when she isn't able to guide you.  When your sugar drops to low you can lose the ability to communicate, get confused, say things you don't mean and on and on.  I train her all the time when I have her.  I want her to understand the how and why of everything.  She couldn't remember which finger she stuck last so when she was on vacation with me for 10 days we came up with a system and now she rotates her fingers and they don't get so sore.  She always went for the left hand and always in the middle so her poor little fingers would get sore.  Now she starts with her index on her right hand, then left hand, then middle, middle, etc.  One round she stick on the left side, then next round right side and then next time around middle.  I explain absolutely everything to her so she understands why we do things like cleaning with an alcohol swap, make sure we use a clean needle or lancet and on and on.  I tell her all the time that ultimately she has to control her sugar but for now she has to use adults to help.  At first she didn't know when she was low but now she knows the different feelings she has and will say something right away.  Every once in a while I will be firm about what she can eat, especially if her sugar has been super high.  Even when you treat with insulin she can still spike with some foods and you just have to learn which foods do that and adjust.  Different diets cause a lot of fluctuation in her sugar levels too.  Sometimes even if you're doing everything right she'll have highs and lows.  It really is a lot even for an adult to keep up with, much less an eight year old.  Her parents unfortunately don't have the same sense as she does and she is forced to make very grown-up decisions.    

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Heidi, I am so sorry for Madison. She sounds like the grown up in her home. Praying for you and Madison. My niece has type 1 too. Diagnosed when she was 2. It is pretty much constant care, and my niece gave up custody because she was more concerned with having fun. I understand your frustration.

Mary Beth I'm sorry you have to know what this is like.  I just can't imagine even thinking about sending my child with somebody that doesn't 100% know how to treat her.  Takes all my power not to let her mother have it.  She comes out with stuff like it is all BIL's fault and she is the innocent victim.  NOT true.  They are both to blame and they both act like two year olds.  I think they actually get some kind of pleasure out of arguing.  Sadly now their child has a life threatening condition and they need to be able to communicate.  I blame them both but I do rest a little easier that BIL has custody now.  He isn't a perfect parent by any stretch but I know he at least tries to keep an eye on her levels.  It is a very tough situation.  I have some pretty strong child rearing beliefs and we will never agree on that.  I don't let her tell me what she is going to do, I make the decision that it is bedtime, meal time, etc.  As she gets older certainly she will have to figure that out but for now it is his job to set boundaries and schedules.  He doesn't believe in schedules at all and if she doesn't want to eat he doesn't make her.  With diabetes skipping meals can cause some big swings.  Sleep is another issue.  She is a sleeper but he'll let her stay up really late and then wonder why she is so tired the next day.  Her mother is horrible about getting her the proper rest.  She always comes back sick and exhausted.  Now that exhaustion causes major problems with her sugar levels.  It just exhausts me.

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Heidi, I would be doing the same thing as you.............STUPID PARENTS !    They aren't "parents"...........they are just two idiots who conceived a child and don't have a lick of sense.  Sounds like SHE is the adult in that situation.  Thankfully, she has you.  8 years old and taking on that huge responsibility.   Good for her !

 

I am Type II diabetic and know how those lows can affect a person.  I get light headed, shaky...........mine is easily fixed with a piece of fruit or some OJ............hers is much more serious to contend with.  I need to eat on a regular basis, too.   

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Golly, Heidi!   You know where I stand on this issue, and they deserve to be stood on!

At times I'm not on my knees but I found another good time to pray, and that is when he is driving.  He doesn't talk then.

When I'm watching the SS and Lenni, is another.

I feel privileged to be able to pray for all of you!

 

Gods blessing shower on Madison, and you..

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I don't think you are crazy.  You are a wonderful person.  The insulin pump could be a blessing.  It may not only keep her blood sugars more consistent it provides a record/history of how she is eating and being cared for.  If mom is not caring for her correctly it will be very apparent by her blood sugar records.   It takes a lot in most states to change custody.  If she is not being cared for properly the pump will provide a record that is indisputable and will be taken very seriously by her doctor and the court system. 

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Heidi,

  I hope that you are keeping track of these incidents with Madison.  Keep a journal of each incident, date & time & a short, factual account of what happened.  Talk to an attorney about your rights & what might be done for Madison, that is if you haven't already. The more documentation you have, the stronger your case will be in helping her.  This child is at risk.  Prayers for all of you, especially Madison. 

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Hi All and THANK YOU for the prayers they worked!  I am so thankful I made the decision to go pick up her mother for the training.  Yes driving 4 1/2 - 5 hours was taxing but I can rest easier that her mother will have the needed education to manage the pump.  It was a lot of information that is for sure.  We are using saline until next Wed. and if all goes well then we'll go live with insulin.  The trainer was excellent.  We all felt overwhelmed at some points, kind of the way we felt when she was first diagnosed and we had to learn how to manage her sugar levels, gives shots and finger sticks, now all of which seems so much less overwhelming.  We'll get in the groove and feel like we've been doing it forever soon I'm sure.  Mom and dad were civil and I didn't have to bite my tongue off or slap anybody.   :D Mom of course told me what a great mom she is and everything that has happened was BIL's fault.  I told her point blank I think they just like to fight with one another.  She even told me she never got mad or angry with him it was all him.  I didn't lose it just said, "Now come on we all lose it at some point and get angry."  The bottom line for me is that I want her to take care of her child and know how to take care of her.  She did thank me for always teaching Madison about her diabetes and talking about her diet.  I was relieved there was no drama.  

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Heidi, I didn't know it was that bad! I thought her dad was at least mostly together. Her mom, well that's another story. I know he fought to get custody from the nitwit. Poor kid, always in the middle of her parents battling. Thank God she has you! You are her rock and the most stable person in her life! Kids are smarter than we give them credit for. Please teach her everything about her pump so she can handle it herself. Sounds as if the "adults" as in Mom and Dad aren't much help. And you're right, it can be a matter of life and death. She sounds pretty squared away so hopefully she'll get the hang of the pump and be able to care for herself. She should know by how she feels if she needs to eat something when her blood sugar is too low. Sounds as if she's recognizing the signs. Sending a BIG HUG your way! I know how concerned you are and how much you love that little girl!

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