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Author Topic: Things are changing and I need some help  (Read 1452 times)

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Offline Jennifersachs

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Things are changing and I need some help
« on: October 13, 2013, 04:56:40 PM »
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  • I come and go from the board, things get real busy with the girls and I can't sit down at the computer for weeks at a time.  I am struggling with my depression and stress over Emily's diabetes.  (Recap) Emily was disgnosed in April this year and we have been in the honeymoon phase big time and we are starting to see some changes which just make me so nervous.  I also have an 11 month old who I guess you can say has taken a back seat to Emily which I feel horrible about.  Of course she gets lots of attention and love, but not the same as I had with Emily when she was a baby.  Emily is testing every boundry I have and has been incredibly difficult for months.  Some days are great and she is super sweet and helpful.  Other days I hear her talking to herself and her dolls about how she wants a new Mommy.  I try to let it go she is 4 years old.  I am her sole disaplenarian and caregiver I make all decisions about her care.  I am remarried and my husband is beyond supportive and helpful, but is so easy going and does some timeouts when he really has to.  He is "Papa Bear" and has been with us since before she was born.  Very long and old story about a divorce during prgnancy and then meeting my sole mate.  Calvin is her real Dad and has been around off and on since she was born.  Up until her diagnosis he has had supervised visits and there was constant child custody court dates.  Either way he is now spending time with her alone and has been doing well but now things are starting to change.  He gives her sweets, he doesn't like to tell her no, he doesn't make corrections like I have asked and written down.  I have told him to call the educator with Texas Childrens, read a book , call and ask me.... I don't care just stop giving her bad foods and not following the plan the Dr. has us on.  He even asked in a Dr.'s appointment if he could give her special treats and the Dr. replied not right now. We need to follow the plan until we are further into her diagnosis, now is the time to learn the right way and just stay on track.  Well clearly that just didn't mean a dang thing.  I did talk to him again yesterday and we are going to do breakfast before she leaves and she will be back in time for us to do dinner at home since he says he has trouble.  Not a big deal, maybe we will see a change.  He acted like he was hearing and understanding my pleas to stop all the crap.  I will just keep praying and stay on top of it.  Ok, so all of that aside Texas Childrens Hospital is not doing a great job of helping learn and figure things out.  I just feel all alone in this and they just aren't helpful when I call.  I guess I am looking for some experienced Moms or Dads to help mentor or be a text buddy for questions and help.  I need some help.  Just an example - last week we were seeing consistant highs I called the Nurse and she changed Emily's doses

    Breakfast 1.5 lantus .5 Humalog - change to 3 lantus and 1 Humalog
    Lunch .5 Humalog - change to 1 Humalog
    Dinner .5 Lantus .5 Humalog - change to 1 Humalog 

    Emily is 35 lbs and has not grown I think she has lost a pound so I guess this is just her body starting to produce less insulin...
     
    Of course I felt like the 3 Lantus was way to big a jump so I am doing 2 Lantus and we are normally in range with a few lows, so good call in my mind.  So I guess the 4th day after the change I checked her before dinner and she was 164. She ate a 60 carb dinner and then had a 8 carb yogart for snack.  I checked at bedtime and she was 80. I had no idea what to do.  I couldn't decide to give her food, or wait.  I was so scared and the only numbers I have for the clinic are for emergencies.  I decided to let her go to bed and recheck her before I layed down.  I checked her about 2 hours later and she was 184.  She slept until 8:15a the next morning and was at 146.  So what the heck I am so confused.  So that is a very long post sorry about that I just feel so overwhelmed and alone.  My husband its great, but not so much in helping me with this.  I try to talk to friends, but they are so sweet, but are so not helpful.  sigh... I guess that is it for now.  Sorry about the spelling and punctuation I am affraid if I go back and read what I type I will delete it and just tell myself I need to suck it up and figure it out, but I don't know how.  I am a 911 dispatcher there is nothing I can't help another person with, but this... this was not included in my training or my 13 years of experience and 33 years of life experince!

    Offline apeanes

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    Re: Things are changing and I need some help
    « Reply #1 on: October 13, 2013, 05:59:21 PM »
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  • I am at work, so I will leave technical to the other ladies.. I just wanted to say, first and foremost, breathe......  Take a step back, and take a deep breath (you would be surprised how much that helps)  Yes this thing is overwhelming, and I will not lie, the first year after your child's dx will absolutely be the hardest of your life.  With that said, it gets .... better is not the word I want to use, I guess it is you get more confident... as time goes on, you will gain confidence and learn to let go a little...  her nighttime numbers you posted.. could be anything, from her honeymoon, to activity, to what she ate to how she held her tongue while she was sleeping.  Sometimes you just gotta be thankful for the number without beating yourself up for not knowing why it happened.  Keep your chin up, bookmark this site and know we are here.. if for nothing else to have a family that understands...
    Anna, mom to
    Sean, 12 dx 4/2010
    Phil, 5

    The life of man is like a game with dice; if you donít get the throw you want, you must show your skill in making the best of the throw you get. - Terence

    Humor prevents one from becoming a tragic figure even though he / she is involved in tragic events. - E. T. Eberhart

    Offline HD

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    Re: Things are changing and I need some help
    « Reply #2 on: October 13, 2013, 06:15:38 PM »
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  • I agree that the increase the nurse recommended was too much.  She doubled all the doses.  :o

    It looks to me like you're on a set carb amount and dose for meals.  My advice is to get an insulin to carb (I:C) ratio as soon as possible.  It is so much easier!  We used set carbs with a sliding scale for 2 years, before learning about I:C ratios.  It's a fair bit of math, but it makes life much better.

    I highly recommend the Dexcom CGM, if your doc will prescribe it and your insurance will cover it.  It truly was a game changer for us to let us see what is happening between tests and especially at night.

    "Think Like a Pancreas" by Gary Scheiner is a great resource.  He has lots of good information and advice.

    Come here anytime to ask questions or just vent.  We all remember those early days, and we're here to help.

    Hang in there.  <hug>
    Heather
    mum to Campbell (18) dx on 20 July 2007 Pumping with the t:slim & Dexcom, and Tom (14) non-D 



    Offline stefaniemsmith1

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      • Life With My Giggly Girls
    Re: Things are changing and I need some help
    « Reply #3 on: October 13, 2013, 07:41:59 PM »
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  •   <hug> <hug>

    Hang in there!! I can already see that you're doing great. Just the fact that you knew that the lantus dose was too much tells me that you've got this.  I agree with ditching the set amounts and going to the I:C ratio. So much easier.


    Wife to my hero, Kevin
    Mom to Mackenzie (14, T1, DX 9/17/12, Pinging Green)
    & Kayleigh (7, T1, DX 11/20/12, Podding)
    www.prncsstefy.blogspot.com
    http://www.facebook.com/GigglyGirls

    Offline Mich*09

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    Re: Things are changing and I need some help
    « Reply #4 on: October 13, 2013, 08:50:12 PM »
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  •  <hug>  Yes, it is overwhelming.  In the beginning especially.  And then again every now and then.  Don't forget how strong you are and even though you feel very raw - you are doing what you need to do every day.

    It sounds to me like you are not getting much support from your endo at all.  I don't agree that she can't have any treats right now.  If you are on a set carb amount, treats can be worked into that.  I also strongly agree on the need for an I:C ratio.  It will make a huge difference.  With that, nothing is "off limits".  She will be able to eat just as she did before dx with a treat every now and then.

    Come back here as often as you can.  We can help you with the emotional support that you need and the technical knowledge too.  We have all been in those frightening first months.  Whatever you question, someone here has probably wondered that too.  Maybe someone has even come up with a brilliant solution.  This place has been a true lifesaver for me.
    Michelle
    Mom to - Jordan 22, Grant (19 dx 9/17/09 MM Revel 6/1/10), Brett 16

    Offline RyleesMom

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    Re: Things are changing and I need some help
    « Reply #5 on: October 14, 2013, 12:55:37 PM »
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  • I agree that you need an I:C ratio.  If you are at Texas Childrens then I'm guessing you are in the Houston area.  I'm in the Dallas area.  We first treated at Children's Medical Center in Dallas and moved her care after several months as they refused to give us an I:C ratio and wanted to keep us at set carbs.  Thankfully I had this group who helped me know what was best as I didn't have a clue what I:C ratio was. 

    We have 2 moms on here from the Houston area (Melinda and Angela) and I wonder who their endos are or if they have suggestions about who in their practice you could talk to to give you more advice on getting an I:C ratio.  I'm just assuming they treat there too.   Conner is older but I can't recall right this minute how old Savannah is but I think she is around 8. 

    Hang in there and you will learn so much and I personally think that once the honeymoon is over that things get much easier even though Rylee's honeymoon seemed to only last 1 week.  Not having set carbs makes life so much easier.
    Melanie
    Dallas, Texas
    Rylee's Mom - 14 years old, pumping with Omnipod March 2008 and Dexcom G4 January 2014- dx 05/11/07 - Emmalee - 3 years old (non-D)

    [/UR

    Offline oddangela

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    Re: Things are changing and I need some help
    « Reply #6 on: October 14, 2013, 10:45:13 PM »
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  • first off   <hug> <hug> <hug> <hug> <hug>

    Now.... disclaimer- we had a rotten experience overall at TCH and left there about a year in.  We now use Dr. Ponder and drive to College Station for appointments.  Can not say enough good about him.

    That said- why are you still on set carbs?  I thought TCH moved off set carbs around 6-8 weeks?  Who is your endo?  At the main hospital or one of the suburban sites?  I would not tolerate that.  We were on set carbs around 6 weeks and if I had it to do again I would have insisted on an I:C right off the bat.  Set carbs did not work for my kid at all.  And NO WAY would I tolerate no treats at 4yrs old.  But honestly- that doesn't match anything we were taught at TCH.  Even where I butted heads with them they still tried to say kids first- kids should be kids.  Are you working with a CDE there?  I don't think I have any names any more (they've had horrendous turnover in the past year or so) but I can probably find a name for you.

    Message me if you'd like.  I'd be happy to get together sometime and we can chat t1 stuffs.

    Hang in there!
    Angela- Mom to S- 8/9/04 (dx 5/4/11)  G- 6/4/08 and L- 4/3/12 and W- 3/18/15



     


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