Dexamethasone steroids and our first cuddle

[Sam182]

Hi All,

You may remember my story as I had my little man on 5/11/11 @ 27 + 3. He is currently doing well with most things but we are having serious difficulty in getting him off the ventilator. He has had 3 tries but each time he just gets too tired and they have to reintubate him. They are now talking about starting dexamethasone steroids on Sunday/Monday as long as he has no sign of infection. I have been researching dexamethasone and have serious reservations as it is highly linked with cerebral palsy and developmental delay. Whilst I will do anything to make him better I am just terrified that he will be one of the unlucky ones and I will blame myself for letting them do that to him. Does anyone have any experience of these steroids??

On a brighter note, we had our first cuddle today and it was magical

 

[JoeandHarry]

I didn't research the dex when I was told my baby needed it to come off the ventilator, I just trusted the drs when they said it was what was needed.

Joe ended up needing the steroids twice, first time he didn't tolerate them well, second time he did better and got off the vent. He was 6.5 weeks old by then, but was born at 23 weeks.

I haven't noticed that he is developmentally behind his twin brother. Joe sat first, moved around first etc. His speech is a little slower but otherwise he seems completely normal. He will be two in January, and is obviously behind where other children his age are, but not much different at all to his twin who didn't need the dex.

 

[Sam182]

I didn't research the dex when I was told my baby needed it to come off the ventilator, I just trusted the drs when they said it was what was needed.

Joe ended up needing the steroids twice, first time he didn't tolerate them well, second time he did better and got off the vent. He was 6.5 weeks old by then, but was born at 23 weeks.

I haven't noticed that he is developmentally behind his twin brother. Joe sat first, moved around first etc. His speech is a little slower but otherwise he seems completely normal. He will be two in January, and is obviously behind where other children his age are, but not much different at all to his twin who didn't need the dex.

Thanks for your reply. Can I ask whether the steroids were given over a 3 or 10 day period?

 

[leylak]

Sorry, this probably won't be helpful for you but I have been on dex because I have hashimoto's thyroiditis and I had a loss and currently TTC. I was wondering why everyone else with autoimmune problems were on prednisolone but I was on dex but although I see that there are some risks of CP, seeing that dex is also prescribed for babies relieved me a bit, hoping that it wont do much harm to the baby if I fell pg.
I wanted to say good luck with the health of your LO.

 

[xxClaire_24xx]

hi congrats on the baby. Ellie has mild CP and she wasnt ever on steroids so there is a chance your baby may have CP even if he doesnt get the steroids, dont want you thinking that cause of the choice to give steroids he gets CP, im sure all will go well and your baby will come home safe and sound xx

 

[katy1310]

Hi hunny

I'm afraid I don't have any experience regarding the steroids, but I just wanted to say congratulations on your first cuddle - that is such an exciting day and one I will never forget!

He's a gorgeous little man

xxx