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Day to day life with immunosuppressed baby?

8 replies

bakingtins · 01/02/2015 16:41

My 8m old daughter is currently on massive doses of steroids to treat infantile spasms. We've been advised that she will be immunosuppressed whilst on the medication and for at least 3 months afterwards. She was in hospital initially and we have been in and out the last few weeks, but now the dust is settling we are trying to plan what this means for us as a family. She has 2 big brothers at primary school so some exposure to their germs is inevitable. She has to do the school run in the buggy, but I have been discouraging her army of fans from getting in her face. We stopped all our baby groups (normally do one thing every weekday) but I'm going to go mad trapped in the house. She is likely to have development delay as a result of the spasms so we have to weigh up potential benefit of the groups against infection risk. The other issue is swimming for the boys - they can't go unless she tags along.
I would really appreciate hearing how other families have managed this.

OP posts:
Wolfiefan · 01/02/2015 16:45

What medical advice were you given? My DS was on big doses of steroids for months as a toddler. He went to nursery as usual and we didn't do much differently. (Hand washing frequently and avoiding really snotty kids where possible!) It was very stressful. Wishing you well. xx

sanfairyanne · 01/02/2015 18:27

what kind of steroid dose? my son has been up and down from 45mg prednisolone daily/every other day/20mg and down tapering to nothing then starting again
if it is that kind of dose, we were v careful in the early days but only because illness caused more relapses and so more prednisolone. i wasnt so worried from the immunosuppressed pov

apart from cpx measles and mumps!!

those were a nightmare to avoid. cpx starts to be everywhere in springtime. have you been told what to do if exposed to cpx?

bakingtins · 01/02/2015 18:49

40mg/day which is >6mg/kg.
My middle son hasn't had CPX so that's a worry.

OP posts:
bakingtins · 01/02/2015 18:50

She's had her vaccs but may well need to delay the toddler doses and MMR.

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sanfairyanne · 01/02/2015 18:58

how long is she on the steroids for? poor baby. that kind of dose is really shit Sad

sanfairyanne · 01/02/2015 19:00

you wont be able to do any live vax so mmr is out for now
cpx exposure means a vzig shot. if she gets cpx then you need acyclovir. mind you, ds caught cpx and also mumps while on steroids and was fine so its a 'just in case' thing

bakingtins · 01/02/2015 19:16

Hopefully only for about 6 weeks, but it depends what happens when we start to wean.
What is vzig?

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sanfairyanne · 01/02/2015 19:23

if its only for 6 weeks i really wouldnt worry about the whole 'immunosuppressed' deal, beyond taking simple precautions. its never been a big deal for ds from that pov if he caught a cold for instance while on highdose steroids. its things like cpx that can be an issue. vzig is an injection they can have if they are exposed to cpx. it reduces their chance of catching it.

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