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Petechiae, but no bruising in 3 year old?
- maria3132
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This is my first post, but I have been lurking big time since my son's diagnosis three weeks ago. The wealth of resources and support from the members seem amazing.
My son's count at diagnosis was 1.9K (1K automatic, 1.9 manual) and he presented with bruises, petechiae and a minor nose bleed (stopped in a couple of minutes); he was treated with a single dose of IVIG, which brought his count up to 54K, but it dropped back to 8K a week later. He was then retreated with a double dose (over two days), two weeks ago, and has been doing great since - bruises and petechiae have almost entirely disappeared... I realize it's likely that he will get the symptoms back once the IVIG wears off fully, but we've been enjoying the relief and ability to let him be a three year old for at least a few days.
However, yesterday morning, I noticed some very small areas with petechiae on his back. They were faded by evening and gone by this morning. Then around lunchtime today, I noticed a few lines of small petechiae in the folds of his arms and legs (opposite of elbows and knees) as well as one bigger red dot and some petechiae under his chin. After his afternoon nap, the ones in his skin folds were gone, and the ones under his chin look a bit better (but are still there). Notably, he has no visible bruising, and when he lightly skinned his knee yesterday on some gravel, the (little to begin with) bleeding stopped quickly and his knee isn't really bruised.
What gives? Has anyone else experienced minor (or not) petechiae, but no bruising or bleeding? We have been told by the hematologist that we don't need to come back for a followup unless we see concerning symptoms, but I am so new that I am not sure what I should be concerned about...
Thanks!
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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If you see petechiae and they seem to be getting worse over a period of time, it wouldn't hurt to get a count done. If he starts bruising with no explanation, get a count done. Otherwise, try not to worry.
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- maria3132
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Thank you so much for the reply and reassurance. He ended up with two bruises overnight, out of nowhere, so we're going back to the clinic tomorrow.
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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- maria3132
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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- maria3132
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Today, he seemed to be going to the bathroom every 20 minutes; it may have been the case yesterday too, but today I worked from home so I noticed. He has no symptoms of a UTI or other illness, urine is clear, etc. Apparently it can be a sign of stress in kids, which would make sense, this month has been tough with all the needles.
However, now I'm wondering if *that* could be related to ITP...
He also has a couple of small areas with a raised rash - definitely not petechiae, more like a heat rash, on one cheek, upper arms, and inside of one thigh.
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- mrsb04
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- ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Frequency of urination is a symptom of anxiety in children but also of a UTI.
Please don't take my next comment as a criticism, I fully understand that you are very worried about him as would I be if it was my little one. Maybe frequently checking him is playing on his mind.
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- momto3boys
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maria3132 wrote: Sandi, thanks for the reassurance, it's much appreciated. The bruises are tiny and light. The largest is dime-sized and it's already half-faded in the last 24 hours. I did find a dry piece of dark discharge from his nose when he sneezed during his bedtime bath, but there has been zero blood from his nose or anywhere else.
Small, light bruises doesn't sound like the more concerning ones that are indicative of a very low count. When I was a child I would get huge, purple (almost black!) bruises with my low counts. There is no mistaking the look of those ITP bruises, which are definitely not tiny and light. That is good news and it sounds like his count isn't in a dangerous range right now. Dark nasal discharge sounds like perhaps just an old clot from a previous nosebleed working its way out. All three of my boys are prone to nosebleeds (no ITP for them, that's just me!) and can get some discharge several days after a big nosebleed. I always figure it's just the body working out some old clots and nothing to worry about.
Regarding the rash, I would try not to worry about it. If it's not spreading and causing excessive itching or some other symptom, it's probably nothing. I recall one of my sons having a bit of random eczema between 18 months and 4 years of age that would just come and go in little regions. We never did anything about it, and it resolved on its own. It never caused any symptoms (fever, itching, spreading, etc.), and some kids just get little things here and there that improve as they get older. My ITP never caused any rashes or skin problems as a child, and I've never heard of any skin issues related to ITP.
It sounds like your son is doing okay with fading petechiae and no major bruising, so just try to live normally as much as you can. That should help with his anxiety too if he sees that things are mostly normal. Hang in there!
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- maria3132
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momto3boys - That's really great advice, and thanks for sharing your three boys' worth of experience with the nasal stuff as well as the rashes and your own bruises! Makes me feel a lot better. His bruises when his count was 1.9k were not large (except one), but there were definitely lots of them (20+), and he had much more petechiae.
I'm happy to report he has had no new marks of any sort in the last 24 hours and all the existing stuff seems to be healing (some of it more quickly than the rest, but still seems to be on the up and up). It has made my day, especially since it's now been over two weeks after the last IVIG.
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- maria3132
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He seems to be holding on to a decent number of platelets at the moment (though definitely not high/normal). It has been just over three weeks since the IVIG (2x 1g/kg), and I'm of course hoping he continues to hold on and then improve as time goes on, i.e. as the last of the IVIG works itself out of the body.
Does anyone happen to know how long IVIG lasts in ITP patients? I've seen estimates of 3-4 weeks for other patients, but they seem to receive lower doses (for weight).
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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IVIG can last a few days or a few weeks, depending on the person. Three to four weeks is a stretch for most, although it does happen from time to time.
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- Hal9000
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- Give me all your platelets and nobody gets hurt
There is a statistic on children with ITP. Perhaps you've seen it. It goes something like this. For 60% of children, their ITP resolves in less than 6 months. For 80% of children, their ITP resolves in less than 1 year. May have the numbers wrong. It is something like that.
Have you seen this document? It has some interesting info on children. It is the publisher that gives it great weight: ASH.
m.asheducationbook.hematologylibrary.org/content/2013/1/276.full.pdf
Thank you for your nice comment, in another thread, about my ITP treatments table. If you don't mind, roughly what is your background? I've noticed your understanding of things like 'degree of confidence'. I think it was a 'probability and statistics' class that I learned of that, many years ago. Never used - promptly forget the exact meaning.
Also, your comment on another thread about needle like pains in one's calf is exactly how I'd describe it. I get those with higher counts when taking higher doses of Promacta. I've suspected it was the possible beginnings of a DVT and with your comment it seems definite. I like to immediately flex and un-flex the muscle to make the pain go away. I have found that taking a baby aspirin will be enough to keep these sorts of pains from occurring.
Have you given thought to what caused your son's ITP? The flu maybe? Do you have any thoughts on vaccines causing ITP?
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- maria3132
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Thanks for that - I had seen some recovery estimates for kids but not cumulative percentages across studies. It seems that some kids take over a year to recover fully, putting even the new definition of "acute" into question. I hadn't seen that ASH document - very interesting! As for confidence intervals and the like, i did take statistics at various points, however, I'm a social scientist, so medicine is far from my comfort zone. My memory is also terrible, and i can't recall making that comment! Did you ever take your 'four types' anywhere beyond the webpage? It's an interesting hypothesis for sure.
Sorry to hear about your muscle pains - i hope the baby aspirin can keep them at bay and also that a doctor is monitoring you for these specifically. I think often of how lucky I was back then... *shudder*
My son did have a cold 10 days or so before the diagnosis, so that's our prime suspect. I've seen that the MMR can trigger ITP, so was going to have his immunity checked before getting a booster, but now I've found out that MMR administration should be delayed by 10-11 months after the IVIG dose he received anyway, so it becomes a moot point. Thanks for the well wishes! Judging by the symptoms, it seems like his counts are jumping up and down these days, in true ITP fashion, but he still has no concerning bruises or bleeding, for which we're grateful!
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- Sandi
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I was chronic but went into remission after 8 years. I never saw that coming or expected it.
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- maria3132
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- Sandi
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- maria3132
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- maria3132
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He is now (4.5 weeks post IVIG) getting quite a bit of petechiae from scratching himself or sitting in his chair too long for breakfast (yikes), etc., but he hasn't had any new bruising in the last 36 hours (woohoo!). He also had some clear discharge from his nose yesterday while crying (because it was time to go home from the park and he was hungry), which I was thrilled to see. The other day, we were playing tennis at the park and I saw blue-purple marks on his forehead and around his neck; it looked like fresh bruising and was over a significant area. I headed home with definite intent to go to the ER. Turns out it was PAINT from one of his toys rubbing off onto his fingers and arm, which he promptly transferred onto his forehead and neck. It came off easily with a wipe but it took me an hour to come down from the adrenaline rush...
It shouldn't be called "watchful waiting" (which conjures up imaging of sipping tea and knitting while observing your child peacefully at play), but "trying not to freak out and failing half the time!" TFFHTing for short? Alternate terms welcome. :lol:
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- dru
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- I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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- maria3132
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- Hal9000
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- Give me all your platelets and nobody gets hurt
I dunno. Sounds like he is low but fine. I think they call it 'wet bleeding' that is concerning.maria3132 wrote: .. He also had some clear discharge from his nose yesterday ... which I was thrilled to see...
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- maria3132
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—-
Count is 10K. They recommended treating with IVIG and we said yes, since he seems to be going downhill based on symptoms. We are waiting to be admitted.
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Good luck with the IVIG. Let us know!
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- maria3132
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His IVIG bottle is very bubbly and keeps setting off the alarms. Thankfully so far he has been sleeping through it. They are trying to fix it.
We have a dilemma: whether to spend the weekend in the hospital and get him two doses again or stick to one and then possibly ask for a steroid pulse on Tuesday when we have a follow up appointment at the clinic.
——
Live from the hospital, this is Friday Night!
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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- maria3132
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- dru
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- I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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- maria3132
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In the meantime, I ordered the papaya leaf extract. I'm trying to read up on toxicity. While I am very skeptical about its efficacy, if it's safe, I'm willing to give it a try, given the literature on dengue (although I realize that's a different scenario altogether).
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- Sandi
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