17 yr old with chronic ITP in AUSTRALIA

Hi everyone:)
My name is Mikki, my over 6 foot tall now 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
bad headaches
bad eyesight!!
nausea/dizziness
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 cep, 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

Im going to get him on the teen forum

bye for now

also - FYI
the only natural remedy that caused significant increase in his count...so far
was vitamin c, which our haematologist did not advise us to take, but when his count went up dramatically and he asked what we were coin, I said Vit C - and he told us in large doses it could have that affect....
has anyone else found this?

Hello Mikki,

Sorry to hear about your son. He seems to be having some unusual symptoms, at least to the degree of intensity you've described. (thinking primarily to the extreme tiredness/exhaustion). Not that it's not unheard of, but it certainly stands out, especially as he has had no treatments in a year and his platelets are at a relatively safe level. Have there been any investigations to rule out some other problem? It could be something simple like low Vitamin D or B-12 or B-complex.

If you're interested in trying homeopathy, I have a wonderful homeopath colleague in Brisbane. I can PM his name to you if you'd like. If that's not near you, he likely could refer you to someone near you, as he is also a teacher.

Homeopathy worked wonderfully for my then, 12-year-old daughter. She was btw 3k and 10k for the six months she had it, and did not respond to any of the treatments, other than anaphylaxis. Once I found the correct homeopathic remedy for her, her counts went from 11k to 411k in less than 4 days. And., so many other things improved for her as well--it was a miraculous healing! I highly recommend it.

Good luck!
April

Thanks April - we are in Cairns, not Brisbane but very keen for any names you can share:)
we are going to do another few tests soon, but we have had many, from dengue to brahms forest virus and more
all his level and tests are normal except platelets so far, inc D and B and Iron. the last tests he had before his platelets were low, was when he had a virus , and at the time he had very high IGE, then normal again, then the platelets have been low since then. His lowest count was 9, that was when the prednizone dose was dropped from 75 mg a day to 25 mg a day over night.....the only time his level went up, at the same time as the prednizone going down, was with the vitamin c high doses

Hi all,

My name is Kelly and my 17 yr old son (will be 18 next mth)and we live in the US. He has had a relapse of ITP after going almost 17 yrs without any episodes. When he was 11 mths old he was hospitalized for 3 days and had gammaglobin treatments. His first episode was after a virus and this episode seems to be the same since he had a 24 hr stomach virus the week before his petechaie showed up. He did have the flu last year, but no symptoms of ITP afterward. Makes me wonder if his platelets have been low since he had the flu.

Since he was so young when he first had ITP he doesn't remember it and thank God he said something when he noticed the petechaie or we wouldn't have known. His platelets were at 2,000 and he was given 2 units of platelets in the ER to try to get them up to at least 20,000 before they let him go home. The first unit brought them up to 17,000 and they went down after the second unit to 14,000, but they let him go home anyway and had to see an Oncologist then next day. The Oncologist gave him an IV treatment of Wen Rho and made an appointment for the next day. At that appointment his platelets were between 13,000-14,000. They started him on 60mg of prednisone and Nplate (I'm not sure of the dosage on the Nplate). That was on Thursday and when he went back on Monday his platelets were at 56,600. We thought that we were going in the right direction, so the decreased his prednisone to 40mg and told him to come back on Thursday for another Nplate injection. When he went back that Thursday, his platelets were only up to 57,000, so they gave him the Nplate and told him to come back on Monday. On Monday his platelets were down again to 43,000, they didn't change anything and told us to come back on Friday for his Nplate injection and another platelet check. He went back yesterday and his platelets were down again to 34,000. They decreased his prednisone down to 30mg and doubled his Nplate injection and told us to come back next Friday.

Have you tried the Nplate or heard of anyone else who has? If so, how long did it take for the Nplate to stabilize the platelet count?

Thanks,
Kelly