Flu Scare and Oral Steroid Use

megs1082 · #1 05-14-2009, 02:24 AM

A bit of background info before my question. I've posted here before regarding my daughter and her parotid hemangioma. Long story short, at 3 weeks of age she was started on alternate day therapy of 2mg/kg of prednisolone. At 7 weeks of age, we started propranolol and starting weaning the steroids the next day because we had excellent results with the propranolol. My daughter is now 14 weeks of age and we are still hanging out at .71 mg/kg of the prednisolone. We only go down 10% on the dose, every 10 days (or 5 doses).

I'm becoming discouraged with how slowly the weaning process is going. We saw very few side effects (that we are aware of) with the steroids, but I guess we still need to be very careful due to her potentially low immune system. My family lives 1,000 miles away and except for my parents, my family (siblings, nephews) haven't met my daughter yet. My family is not wealthy by any means and it would be a hardship for all of them to purchase tickets to fly here. I thought it would FINALLY be safe to fly with my daughter to visit them and now the Swine Flu scare is going on. My ped. derm. told us initially, to wait until the end of May to fly as the flu risk would be low then ,and now there is this to deal with! I spoke with a nurse from my ped's office (my ped is out of town for a few days) and both she and the doctor on-call said it would be okay to fly. Actually they said it would be the same level of risk as going to the grocery store. I felt momentarily put at ease with those opinions, but still can't get over the fear that I would be putting my daughter in unnecessary jeopardy. I know my ped. derm. would probably say not to do it, but she is a self-proclaimed germiphobe! It is not unusual for her to wash her hands 2 times during a 20 minute office visit!. I know the flu is dangerous for any child under 1 year of age, but probably more so for our kids on steroids.

I'm not sure what I expect people to say here - maybe it's more of a vent. BUT, maybe someone has some info to add or advise? Maybe some experience with steroids and the immune system. Would you go? Is our ped. derm taking an unusual amount of time with the steroid weaning?

Thanks for reading!

Megan

Sam's Mom · #2 05-14-2009, 01:30 PM

Hi there! I'm glad to hear things are still going well with the propranolol. Two quick comments:

1) We did wean Sam a lot faster than what you describe. He was on his full dose for about 6 weeks and the weaning process took about six weeks. I'm not 100% sure, but I think we reduced his dose by 2 mgs/week. Sam was quite a bit older (9 months when we started to wean him) but I think it's worth asking why the weaning is being done so slowly.

2) We flew with Sam when he was on prednisolone. He was about 2 weeks into his weaning phase by then and we asked our doctor repeatedly if she thought it was OK. She was reassuring, and everything was fine.

(Of course, a month after we got home, he picked up a bug from who knows where and we spent 8 hours in emerg because they thought it was meningitis. It turned out to be flu but I suspect that it hit him harder than it would have otherwise.)

nickbar · #3 05-16-2009, 03:12 PM

I know the weaning process is slow, but it is best for her to have this proper weaning.

Immune system: I would say it would be ok to travel as well. She is still on steroids and I found in talking with many parents and my experience with my son... once off of the steroids completely, they tend to get sick a lot and not as much when on the.(it takes a few months for their immune system to bounce back).
My advice is to enjoy visiting family, just be careful: wash hands, keep anti-b solution bottle in your purse/diaper bag...especially on an airplane. Ask people to wash their hands before playing w/her. People should respect your extra precaution due to the immune issues. Encourage other kids to cough into their elbow (not their hands). etc.
GOOD LUCK

megs1082 · #4 05-19-2009, 03:12 AM

We're going to go! I've booked travel for next Wednesday - I'm just going to pray I don't hear any coughing or sneezing so I'm not nervous and paranoid all day!

You both helped me to make my decision - I knew I couldn't be impartial as I really want to go!