Question about steroids — The Bump

Question about steroids

So after my post about the ventilator yesterday, the head NICU doctor ended up meeting with me and telling me that they were concerned that he was on the vent so long and they want to try steroids to get him off it.  They started hydrocortisone yesterday, and we are praying it works within the next 48 hours.  If not, they will d/c that steroid and start him on decadron instead.  Has anyone's LO had experience with these steroids?  Are there any side effects you noticed that I should look out for?  They warned me about all the potential side effects, I'm just wondering what you all have experienced if you've been through the steroid treatments.  I'm going to call in 10 minutes for my morning update, and they started the treatments yesterday while I was there, so they said they should see some improvements in his breathing and urine output by this morning if the hydro is going to work.  Fingers crossed!!

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Re: Question about steroids

  • Before Aiden got the steroids, we were warned about possible neurological side effects.  However, the neo mentioned that the studies done that showed these side effects used the steroids for longer periods of time than they are used now, and in much higher doses.  It did freak me out a bit, but my thinking was that the good outweighs the bad.  In order for Aiden to go home, he needs to get off the vent.  Without the steroids, he probably would not have gotten off the vent.  As far as seeing the side's too early to tell for us.  And even if we notice anything in the future it will hard to decipher whether the effects are from a) the steroids b) the steroids/mag drip I got before they were born c) his brain bleed d) his hydrocephalus or e) his prematurity.

    Sorry, I know that wasn't the answer you were looking for.

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  • We did them to help get Scarlette off the oscillator. We were wanred about everyhing too but our feeling was that she was already at risk for those things from being so early and her other issues, that we'd never know for sure if it was from the steroids or not. And her drs. thought the steroids were the best option for her.

    She is 17 months and we haven't seen any side effects .

    S came off the oscillator two days after the steroids and off the vent to a cpap about a week later I think. We saw marked improvement in her kidney function after she came off the oscillator too.

    HTH! Thinking of y'all!

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  • Ditto everyin both PP's said. DD had two separate courses of Decadeon. Both times we saw almos immediate it a small improvement. The first time to took a week or so to get her off the vent, the second time she was stuck after surgery and within 2 days she was on low flow cannula and off O2 completely the next week. 

    To date we havent seen any lingering effects. However, all of the "side effects" that she could exhibit could also be a result of IVH or just being premature. Not nessecarily for the steroids. 

    Mom to preemie b/g twins born 14 weeks early after 3 years of IF, 8 clomid cycles and 1 IVF. Lilypie Premature Baby tickers
  • DrRxDrRx member

    Adalyn started the steroids the day she got put on the oscillator.  I'm glad that she went on both the oscillator and the steroids, since I really think it's what helped her get off the vent entirely.

    She was on the oscillator for 2 to 3 days and then got put back on the conventional vent.  She pulled her tube out a few hours after she got put on the conventional vent and they decided to try her on CPAP.  She never had to go back on the vent after that. 

    She stayed on the steroids for about a week--they kept tapering her dose.  For us, it is still early, but she hasn't had any problems as a result of the steroids.  Adalyn was on dexamethasone (decadron).

    Keep us posted and let us know how the steroids are working. GL!


    TTC Since July 2008.
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  • DS had one course of decadron to keep him off the vent (we had actually approved them to start him on it when he self extubated and so they tried him on CPAP and he never looked back.)  I think it was a 7 day course, with them weaning down the dose every few days.  It was a stressful decision for us, but like others we knew he needed to get off the vent, and that if there were any side effects it would really be impossible to tell if they were from the steriods or his prematurity.  Our NICU only uses decadron for short spurts of time and in much smaller doses then the previous research with the bad outcomes.  We never regretted the decision.

    FWIW, DS hasn't exibited any issues so far.  He is only 21 months, and obviously we don't know what challenges he will have in the future, but so far he is developing very appropriately for his GA. 

    I hope the decadron makes a big difference for your LO.  Keep us posted!

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  • My DD had 2 separate rounds of decadron while in the NICU and she is an extremely smart & normal almost 3 year old.  The way i thought about it is she needs to be alive to have learning disabilities.  good luck.
  • DS was a 26 weeker had 2 rounds of it. We were told about the side effects and we agreed the first time. Apparently, they did not need our consent the 2nd time since they gave it to him without consulting us. Anyway, I agree with all the other posters that the studies are not definitive on how it affects the babies, but our feeling was that the good outweighs the bad and since he was born so early, he was at risk for all of that stuff anyway. He will be 4 in June and he has not shown any side effects at all. DS can already read simple books and can count to 100. I hope everything goes well for your LO too!

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