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16 month old son newly diagnosed

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14 years 7 months ago #12951 by DanniiWatty
16 month old son newly diagnosed was created by DanniiWatty
Hello Everybody,
My son was diagnosed with ITP 2 weeks ago by our local hospital. His levels were 4000 when he was first admitted onto childrens ward following a visit to our GP as he developed a 'rash' which we now know to be the purpura, from there his levels went to 5000, then up to 24000 (At which point we were discharged) at the next set of blood tests 2 days later the levels had gone down to 4000, 2 days after those readings he gave more blood which gave a reading of 2000, they then went back up to 4000, now they are at 6000. He is a bonny little baby boy and apart from the readings he is a well child. I have my fingers and toes crossed that as we are nearing the end of week 3 that the levels will continue to increase. I am keen to learn of the levels of other baby/toddler ITP suffers - trying to keep a toddler from falling over is a NIGHTMARE!!
I look forward to visiting this forum on a regular basis as any support during this time is greatly appriciated.
Thank You
Dannii
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14 years 6 months ago #13341 by ChrissyMK
Replied by ChrissyMK on topic Re: 16 month old son newly diagnosed
Hi Danni....my daughter was diagnosed this past Thursday. I'm so confused and scared. her levels were are 4,000 when we entered the hospital and the last blood test they took there was 15,000....cause they had treated her with WinRho....I have no idea what I am in for. I have a follow up appointment with a hematologist on Wednesday. Any advice?
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14 years 5 months ago #14343 by shelley6591
Replied by shelley6591 on topic Re: 16 month old son newly diagnosed
My son was diagnosed at 18 months and he is now almost 6. He has only gotten as low as 52,000 and luckily he came up on his own and hangs around 120,000/130,000 on his own, my husband also has ITP and has the same numbers. We were nervous with keeping a VERY active little boy still but if a child with ITP has decent clotting factors it ca make things much easier, my sons are fine so he never bleeds. We ocassionally notice Petechia on him and he may have a few extra bruises but nothing crazy. I was terrified at first but things have been very uneventuful for him since he was about 2 and I often forget he even has it.

Good Luck!
Shelley
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14 years 5 months ago #14367 by kgulbernat
Replied by kgulbernat on topic Re: 16 month old son newly diagnosed
Hi there. My son has had ITP and neutropenia since January 2011. He was 15mths at diagnosis and now 18 months old. He has had 2 treatments of IVIG, 2 rounds of prednisolone and a bone marrow biopsy. His counts have varied from 3,000 platelets to 270,000 (while on prednisolone). However, the treatments have not held a response for more than 3 weeks. We are getting another bone marrow biopsy tomorrow just to be sure. He has had a count of under 13,000 for the last 2 weeks and done well. We've adjusted our house to be as safe as possible...the main obstacle is his twin brother :). I was very scared at first having a toddler with the ITP, but overall it has gone well. He has had petechiae, bruising and some bleeding at the nose, but handled the low numbers very well. Good luck! I hope your toddler's ITP resolves quickly.
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