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Starting growth hormone therapy have ?

Discussion in 'Parents of Children with Type 1' started by Jaredsmom, Jul 20, 2012.

  1. Jaredsmom

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    Jared will be starting growth hormone injections in a few days. I was wondering if anyone has any experience with this? I know it will increase his insulin needs and each child is different but I am wondering just how much his needs will increase and how much more insulin I should be putting in his pods. We have a Dexcom so we will be making changes to basal rates etc as needed. Just looking to get some input on how much % wise your cwd needs went up and if that varies throughout the day, or if you only needed to increase basals overnight. His endo has just told us to be prepared to make changes on a daily basis.
     
  2. Christopher

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    I am sure people here will chime in and give you some help, but realistically, no one can predict how much of an increase your son is going to need, can they? They can share their experience of course, but you are going to have to play it by ear and see how his bg's are and then increase from there.

    Good luck
     
  3. Jaredsmom

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    I was asking because I wanted to have some idea how much more insulin to put in his pods as stated I plan on going by his numbers to adjust his basal rates. I do know what I am doing. You just reminded me why I rarely post on this board. Always nice to ask a question and get treated like you have no idea what you are doing by someone who doesn't even have experience in what you were asking about in the first place.
     
  4. mmgirls

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    Since it is the pod and you really don't want to have to change it early if it runns out I would just fill it full until you see where the insulin needs end up. If you are worried about not having enough insulin I would ask for a increased rx or some samples from the endo.
     
  5. Jaredsmom

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    That's what I was thinking but I thought I would ask on here first and if most people were typically seeing a say 25% increase for example increase the amount by say 50% . Just trying to get a rough idea of how much I should increase the amount we put in the pods so we don't waste quite so much right now we put in 150 units which covers 3 days + . Obviously we plan on using our Dexcom to adjust his basal rates,etc, as needed.
     
  6. Christopher

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    Defensive much?

    I was responding to your words above. I never said you don't know what you are doing. I even said good luck. No need for you to react in the manner you did. This is an open forum and people can respond in any way they like. Some responses you will agree with, others you may not. That is the nature of a forum like this. If that bothers you then maybe you are right, this may not be the right place for you.
     
  7. sooz

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    This is exactly the right place for her. Perhaps you might rethink that statement. If someone is upset at what you post it would be refreshing to read an apology for the misunderstanding instead of an invitation for them to leave the board. Just a thought.
     
  8. Christopher

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    If I felt like I did anything in the slightest wrong I would be happy to apologize. But I didn't. So I won't. :cwds:

    And according to Becky's rules you should not even be posting because you are not helping the OP with her original problem. Becky would probably recommend PM'ing me instead, and she would probably be right.
     
  9. sooz

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    An apology for a misunderstanding does not mean you necessarily did anything wrong it means that there has been a MISUNDERSTANDING and you are sorry that that happened. Becky was not trying to make any rules so don't put that on her. I will just ignore the fact that you think you can reply here, but I should not.

    To the OP I think that growth hormone is a really specialized issue and it may take a while for someone who has experienced it to reply. I think you are on the right track in your thinking though. Wishing you and your son well, and I hope you continue to post here. Sorry for the interruption in your thread.
     
  10. Becky Stevens mom

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    And as you can plainly see, Becky removed her extraneous comments so the thread wouldnt get derailed and the OP may actually get the help that she seeks. I of course dont make up any rules here but do think that its important that posters feel confident that they can come here for help. Lets leave it at that, shall we? Its been a rough day for all of us in this country. Peace
     
  11. Mish

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    I would say, be prepared to make changes on a daily basis. As to how much, it's going to be a crap shoot - just like with our kids' natural production of growth hormone and how that effects each differently, you're going to just have to give it a whirl and see what happens. "More" is probably the only answer anyone has. :)
     
  12. MamaC

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    To the OP - good luck! I'm sure people with experience can offer some guidance.

    To the forum Bickersons - leave off, already.
     
  13. MomofSweetOne

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    I don't have any experience with growth hormone, but my daughter is growing at an incredible rate right now, moving from the 25%tile to the 50%tile in the last 6 or so months. Trying to keep her adjusted has been challenging. This is what I've hit on that is working for us most of the time: I watch the CGM and how close she comes back to target after a bolus. If she either plateaus or doesn't return to within 30 points of target a couple meals in a row, I up her basal profile 10% per 30 points off target. I also watch at night to see if she's tracking higher or lower and adjust accordingly. Her CareLink graph look like stairsteps recently. It's definitely not fail-proof, but it seems to hold true most of the time. But, being a tween girl, she also does sudden drops in insulin needs by 30-50% sometimes.:eek:
     
  14. MamaLibby

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    Sounds like my DD! We do something similar, I just up it 15% because Ella's less sensitive to insulin...but YDMV.

    To the OP, we haven't had experience with growth hormone, but she was on steroids on and off for two years for another condition and, to be honest, it was BAD. The first round, I had her basals running at 2-3 times her normal profile (Like, not a temp basal. it was enough I'd made all of these huge increases permanent). And we were still seeing highs on a daily basis. 400s at least twice a week.

    For the second round of steroids (we had a break of a few months), we talked her Endo into using a type 2 drug for the insulin resistance. (can't recall the name right now...It starts with an M) It helped a lot with the high-highs (3-500s) we had seen several times a week on the first round, but she still needed quite a bit more insulin over all. But that could of also been from the stress of illness, the less activity because she was so tired all the time, she was growing. You know with D there are so many variables! We didn't have a CGM at that time, and I think it would've been helpful.

    I understand your situation is a bit different, but I just wanted to share my experience. If relentless highs become a problem, ask about metaformin or a similar insulin-resistance drug. http://www.childrenwithdiabetes.com/clinic/care.htm There are several articles about this under section 8 on this page.

    I hope this helps at least a bit and good luck!!
     
  15. Jaredsmom

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    Thanks everyone for your support. Just trying to get some idea what we may be in for. Jared is in the 10% for height and has only grown 1/2 in in the past year. His bone age was also determined to be 2years behind. They found him to have a moderate growth hormone deficiency. Jared is 13 yet most people think he is 9 or 10. Jared is tired of being the smallest boy in his grade and getting picked on for it and his diabetes. He is the only kid in his school that has diabetes and ever since he started middle school with other kids that haven't known him all along he gets picked on a lot. All the kids that have known Jared since kdg when he was dx don't give him a hard time about it.
     
  16. LoveMyHounds

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    Sorry to hear it..... Does Jared know Doug Burns' story?
    http://www.diabeteshealth.com/read/...oy-with-type-1-diabetes-becomes-mr--universe/
    There's hope for everyone ;)
     
  17. skyleysmom

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    I have no personal experience with growth hormone, but I do want to wish you good luck. I'm glad you came here for help. I was pretty involved here during our first year after dx and I think I have only posted maybe once in the past year because I did find some of the bickering upsetting and I often found myself feeling defensive. I ended up backing way off. Ironically, I posted a question today and I am grateful for the helpful replies that I got. So I just wanted to offer you my support and say that I hope you come back for support when you need it!
     
  18. Becky Stevens mom

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    Ellie, I just wanted to say how kind that was. The offering of support to this person and letting her know that she can trust this site for support as well;) Not such as bad place when you get used to it and often the best place for info from the real experts (nothing against the endo's and CDEs, honest:eek:)
     
  19. Jaredsmom

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    Yes I have found this to be a good place to get support and advice. I would never have known about blood ketone testing without this site. I just wish some people would just stop being so negative. It's not helpful and really doesn't accomplish anything. Thank you everyone for your support it is because of you that I come back here. I may not post often but this is a daily stop on my ride down the Internet highway :D
     
  20. skyleysmom

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    Thank you dear Becky! I have found more understanding, expertise and support here than I have found in the endo office. I did shy away and honestly, I was not going to continue on this thread, but your comment made me smile and feel good and I wanted to say thanks! :cwds:
     

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