My Daughter has been diagnosed with a... - ITP Support Assoc...

ITP Support Association
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My Daughter has been diagnosed with a most recent Platelet count of 4

JimbobChally
JimbobChally

Hi,

My 4yo daughter was diagnosed with ITP when he platelet count was 12 back in Feb; it slowly went up to 28 over the 3 weeks that followed, but has since slipped and her latest reading 1 week ago was 4.

An appointment finally came through to see a blood specialist at Addenbrookes, but it's not for 2 months. We were previously advised that she couldn't attend nursery if her count was below 20, but after complaining about the delayed appointment the doctor on call told us my daughter would be fine to go to nursery, and start school in september and go about her daily life as if her count isn't low, it's worth mentioning she is now also anemic.

Has anyone else had a problem like this? We feel stuck, and as though nobody can really give any information on how to look after her etc...

James.

8 Replies
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ITP in kids does not take long usually, you can see anther hematologist for take more care and prevent troma in this months, don't worry but get a CBC test weekly and see your doctor every week.

Hi. I pay private to see a haematologist in Rivers hospital High Wych Rd, Hertfordshire, Sawbridgeworth CM21 0HH, then you can get an appointment the next day speak to your doctor about it, it’s worth looking into if you can afford it. It cost me £250 for first consultation and then £125 after that. It’s worth going to your doctor first to get all her bloods done before you go as blood tests can be expensive. Good luck

if the rbc-anemic is low also,maybe you need to have a monthly check up .bcoz ITP is platelet problem only. if rbc also lowered,maybe there is another problem.you should consult to hematologist

My son was diagnosed when he was 20months. He had his immunisations at 18months and everything went downhill from there. His lowest was 9. He had tonsilitis and a few things going on so was put on antibiotics..his platelets went from 9-279 within a week! He was going really well and as it had been 3 months was taken off the system. However within that week he had croup and needed steroids, everything went downhills from there and he has been diagnosed with itp again. We did the bone marrow biopsy and it came back clear. His platelets were at 127 after his course of antibiotics and bit nervous for his next bloods.

Regarding your post: I uss to go to playgroup at a preschool however have cancelled going until we are back to normal. Its a huge risk leaving your child at a daycare centre with extreme low platelets. 4 is a very dangerous level!

I stopoed going to the park, stop play group and much more when he was at 9! He had the slightest falls which caused hematomas to his head and a rush to the hospital multiple times. We bought a helmet for his to play from rebel sport. Its not a plastic helmet but a foam like helmet to help for outdoor play. Its the head you have to protect!

Hi Jimbob, sorry to hear about your daughter. I'm brand new here, and my three year old was diagnosed earlier this month with a count of 1900 (or 2). We were told that anything below 10000 (10) is margin of error and unsafe. He has been treated with IVIg twice because his hematologist felt it wasn't safe to let him bounce around untreated (the first time, he had only one dose, which lasted under a week, and the second time, he had two doses, which has lasted 10 days so far -- he is getting very minor petechiae as of this evening). We are in the US with good insurance, so that could be part of the difference. If I were you, I would seek a second opinion and ask about treating at least with prednisone. Best of luck.

Kyriak51
Kyriak51
in reply to maria3132

Hi I also live in US (Chicago IL), IVig didn’t work for me either, what treatment regime is your child on? Have his platelets stabilized, how is he doing? Where do you live? Welcome to our community:) Georgia

I pray your daughter totally recovers. A number that low is dangerous and your doctor doesn't seem to be worried. If she were my child I would want some evidence she is stable and would want to know about re-checking the count and how often.

She just had an appointment with a heamatologist after a long wait, and they've advised 6 weekly checks.

Her count is low, and hasn't had many effects other than a couple of short nosebleeds.

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