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**lauraand**

mommy06mommy06 member
in Special Needs
Hey, How long did it take to regulate your ds meds?? Our dd just got diagnosed with di, ghd and may possibly need cortizal to regulate sugar levels. We have been in the nicu for 28 days and they are finally discharging us Monday but her levels are not perfect and I am worried about getting her home and then having everything go crazy on us. I know they would not let us go home if they thought she was not ready but I am a nervous wreck! Are the drs continually changing the amounts of his meds? Thanks!
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Re: **lauraand**

  • lauraandleelauraandlee

    We had him on a high cortisol dose (we have it compounded at the hospital pharmacy every month), but his endo wanted it at the lowest tolerable dose b/c it can stunt growth if it's too high of a dose for a prolonged period of time.

    He was on dextrose in the NICU (he was born with a blood sugar of only 19), and it was impossible to wean him off of it and maintain his glucose levels, so we started him on hydrocortisone (cortisol) in order to get him off the dextrose.  We were only in the NICU for 6 days before he was maintaining his sugar levels, but they were still low, only in the 40s and 50s most of the time (we checked 5-8 times a day, before feedings).  SO, that's why we knew he needed growth hormone too.  We started GH therapy at 1 month. 

    And just now after his four month visit with his endo, she upped his GH dose again and NOW his sugars are maintaining in the 70-low 90 range before eating.  I only check once a day now unless he's sick (he had a fever which requires a stress dosing of hydrocortisone).  He seems to need more GH than other kids to maintain his sugar (GH is NOT just for growing as you'll learn if you start researching especially info from the MAGIC foundation). 

    Do you have a glucose monitor?  I swear that is my saving grace.  Every time I'm freaked out if something is wrong, I check his sugar.  If other systems are struggling, like blood pressure, his sugar will drop too.  So it's a great indicator of what's going on.   I know if his sugar is low too, I can feed him, test again and see within 10 minutes a dramatic increase in his levels.  (Our endo gave us the monitor for free, and needles and test strips before we even left the NICU.  Ask too about a copay card (well for ALL the meds she needs), but the drug companies have copay cards that will help you cover the costs of the meds, and we got one to cover the cost of the test strips.  Otherwise the strips are $50/month, we pay only $15 with the card!).

    Our Little Fur Family
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    My Three Sons
    #1: 2.06 #2: 1.08 #3: 9.10

    DS #3 diagnosed at birth with panhypopituitarism - lack of pituitary function. He is treated with thyroxine, hydrocortisone, growth hormone and testosterone.

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  • mommy06mommy06 member
    Thank you! I am a nervous wreck about taking her home. It's all so overwhelming. I know endo will keep a good watch on her but it still makes me nervous. I hope once she is home and we get into a routine things will settle down. We do not have to check her sugars now, but we may depending on what the last test tells us about her cortizal levels. The results should be in sometime next week. Right now she is on gh .2ml and .75ml of ddhtp for her di. Anyhow, thanks for your response. Do u mind giving me you e mail address? Thanks again
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