My name is Mikki, my 17 yr old son Jarobi was diagnosed with ITP in 2010
I have been looking on here since then off and on
I wanted to say that it is so great to have this forum, and website !! really helped in my education of this frustrating disease heaps!!
Jarobis count has been between 20 and 40 for almost the whole time- except for treatment related tempory changes.
his initial symptom was sleeping - for a week
other than low platelets he has no ITP symptoms (he used to get blood noses about 2 yrs before his platelets dropped)
but sine he has had low platelets - he has had many changes - including
EXTREME tiredness ( 4 or 5 hours awake at a time)
could not complete yr 12 last year (
we are not keen on a spleenectomy - unless no choice I guess
we are super keen on finding more natural treatments - we have seen natropaths, herbalists, reiki, and more, doing kinesiology in March , will look into homeopath after todays reading in here also....
Jarobi has had no treatment for almost 12 months now, but in 2010 and 2011 he had prednazone (starting on 75mg per day) THIS was a huge problem when coming off the steroids, is the lowest count he ever had by far..I suggest tapering by 1 mg per week to anyone wanting off it!! he had IVIG in june 2011 after coming off steroids
this forum has made us all feel much better about dealing with this, and reading how the teens, and the parents and the adults cope, and support eahother is awesome...
if anyone has good advice about others in Australia with ITP
or good ITP doctors in Aus - please let me know
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