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Transition to Oral Meds

Discussion in 'Parents of Children with Monogenic Diabetes' started by pandaco, Oct 8, 2011.

  1. pandaco

    pandaco New Member

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    My son was dx at 7 weeks old. He is now 14 months and we have been pumping since before he left the PICU. We have been participating in the research studies at U of Chicago however nothing has some back conclusive.

    Monday he is being hospitalized to undergo a trial transition to oral meds. This is the 1st time our endo is using the transition protocol however has had close contact with the docs in Chicago. He wants to try it "just in case" given my sons age at dx.

    Has anyone else went through this??

    Thanks!
     
  2. Amy C.

    Amy C. Approved members

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    There are other parents with children who have monogenetic diabetes. I don't recall hearing that a hospital visit was necessary to transition to the oral medication.

    There is a blood test that can be done to determine if the diabetes is mono genetic, but it isn't experimental at all.

    It sounds like it is the first time your endo has transitioned a child to the oral meds.
     
  3. emm142

    emm142 Approved members

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    So, he's being transitioned to oral meds without being sure that he actually has monogenic diabetes? It makes sense that they would want a hospital setting for this, because obviously if he actually has type 1 then an insulin deficiency could be dangerous.

    I really hope that the transition works for you and that he is able to stay on oral meds. I can't even imagine dealing with diabetes in someone so young.
     
  4. ChristineJ

    ChristineJ Approved members

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    For those who may not know, the University of Chicago/Kovler Diabetes Center has the Neonatal Diabetes and MODY Diabetes National Registries and are led by Dr. Louis Philipson. They are the leading monogenic diabetes researchers in the US. As part of their research on monogenic diabetes, they offer families genetic testing for genes known to cause monogenic diabetes. They are also trying to find other genes responsible for the disease. There was a mom that posted recently whose son had been tested by Kovler several years back. At the time the gene causing his diabetes was unknown, but had since been discovered. They found out recently that his diabetes is monogenic after all.

    I agree. Hope everything goes well. Please keep us updated!:)

    Christine
     
  5. mmgirls

    mmgirls Approved members

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    I am wishing you luck! I appreciate you being willing to "try" this. That is absolutely wonderful that they are willing to try.

    My dd was DX at 13 months and i so hoped that it was monngenic, but as of yet, just regular T1.

    Please let us know how it goes and if in fact it worked and your child is the next discovery in this puzzle called diabetes.
     
  6. MrsSM

    MrsSM Approved members

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    DD diagnosed at 6 weeks.

    HI!! My DD was diagnosed at 6 weeks old. She was on insulin for 4 weeks while the research centre in Exeter (UK) tested her DNA sample for a gene mutation. She transitioned from insulin to Glyburide at 10 weeks old. We did not do the transition in hospital as my husband and his dad had been on insulin for 35 and 45 years so we have lots of diabetes experience in our house. if we didn't have the experience I would probably felt more comfortable in the hospital as we did have a few nights where we had to do mini dose glucagon to bring up sugar. It was hard to get her to nurse if she just didn't want to when her number was really low and dropping.

    feel free to email me anytime
    stephanie@actionrecon.com

    Steph
     
  7. redcurls3

    redcurls3 Approved members

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    We did the transition in the hospital for my son at 21 months of age, but that was years ago and we believe he was one of the first 10 in the US to do the transition so they just wanted to be cautious. Since then, many more patients have begun to transition at home. If they are not sure of the specific gene, I could see why they want to be cautious by trying the oral meds at the hospital. We kept Andy's pump connected and just kept decreasing his insulin as we started to see the glyburide work. They also put a catheter in his wrist when he was admitted in case he had a quick crash and needed sugar quickly. Luckily we didn't need to use it, but did have to reconnect the pump one time on the third day when the pharmacy didn't get the meds to us on time.

    I hope the oral meds work out for you. I know the doctors in Chicago are working constantly to identify new gene mutations. There is a family up there right now (baby, mother, and grandmother) who are trying a transition and they still haven't identified their gene mutation. Hope they can figure it out for you. Feel free to message me if you want more information.
     
  8. pandaco

    pandaco New Member

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    Update

    Well, we are home from the hospital. We started on the glyburide and slowly decreased his insulin on the pump. We had a few days where it seemed like it might be having an effect but not enough to get off the pump entirely.

    Since we've got home we've continued the glyburide but have since needed to increase his insulin because we have continued highs. Unfortunately we are back to where we started with basal/bolus on the pump. We have continued the oral medications in the hopes that as they increase we may see some effect even if it is preventing the high/low swings that we get because of his age.

    Although this may not be the answer for him (super bummed!!) we were so grateful that we at least had the opportunity to try something new. We just hope that as the Univ of Chicago continues working on their genetic testing they will identify something else that may work for him. Until then we keep pumping away...
     
  9. Cookie Monster

    Cookie Monster Approved members

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    Sorry the oral meds didn't work out for you.

    There are some very talented people around the world making inroads into monogenic diabetes. I'm sure you will get your answer one day.

    Until then you'll be fine with the pump and it will get easier as he gets bigger. Those swings in the little ones are tough.
     
  10. mmgirls

    mmgirls Approved members

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    THANK YOU for trying!!!

    I know we had my dd checked even thow she was out of the parameters being 13months old at DX. I could not "try" without the wonder that it could be that. And would have fet horrible IF years down the line it was that and she had endured so much without need.

    Again thank you for trying!
     
  11. ChristineJ

    ChristineJ Approved members

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    Thank you for posting an update. I've been wondering how things were going. I'm sorry things didn't go as well as you had hoped. As you said, hopefully something will be identified someday that will help, or at least give you the answers you need. Best wishes! :)

    Christine
     

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