TOPIC:

Hi everyone,

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!

Hi Maria! The fact that the petechiae are fading is a good sign. If he only has a few that go away, I wouldn't be too concerned. Sometimes petechiae can appear (even with normal counts) if a person cuts off circulation to the area. I've had petechiae with normal counts.

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.

Hi Sandi,
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.

Good luck! Let me know!

Thanks. Spoke to the nurse. The petechiae are going away but he now does have four small bruises, though not in any odd places. We're on the fence about taking him in. The nurse said we could watch him but to bring him in (to the clinic or through emergency, depending on the hour) if we see an increase in bruises and/or petechiae or if we are otherwise concerned. I'm guessing a crash is in his near future, but when I look at him now (and I have been examining him head to toe 2-3 times a day), it really doesn't seem bad. So we're watching him, hour by hour, and keeping all our fingers and toes crossed...

I always went by the look of the bruises. Small yellow ones didn't concern me. Large black or purple ones did. You'll know when to worry, trust me. Always though, if in doubt, check it out!

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. I'll give the nurse another call in the morning, primarily to ask about the following:

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.

Maria
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.

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!

mrsb04 - Thanks, I was actually thinking the same! I try to check him while I'm changing him but he can still see the hyper focused look in my eyes!
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.

Quick update: my son has had between zero and four new bruises per day for the past week, making for 5-10 visible bruises at any one time. Most have been very small to small (the largest one is smaller than a quarter), and on his legs, although he currently has two on a forearm, one on an upper arm, and one tiny one above his hip. He also has 4-5 on his knees, but he did fall a few times in the last week. He also has very small amounts of petechiae in 2-3 places. They all seem to be healing quickly (2-4 days). He has had no nosebleeds or any other bleeding and is full of energy, and eating and sleeping well. We are continuing to watch him -- we canceled a beach trip but are doing fun stuff near to home / hospital, in case we need to go in.

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).

Hi Maria. I'm glad that your son continues to have few symptoms.

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.

Maria, hope your son is doing well. Have a few things for you.

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?

Hi Hal,
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!

Maria - I think of the 'acute' vs 'chronic' thing this way. All chronic means is that the child has had ITP for more than a year. A child (or adult) can go into remission at any time, even if they are considered to be chronic. Chronic does not mean a lifetime by any means. I've seen parents panic at the 11 month mark thinking that if the child didn't have high numbers in a month, they were doomed to a lifetime of ITP. It doesn't work that way.

I was chronic but went into remission after 8 years. I never saw that coming or expected it.

A quick update: my son has had 5-10 bruises and some petechiae on any given day over the last few weeks. Today, he has 6 small bruises, around his knees (4) and mid-section (2). Three are new (from today) and three are old (from 2-3 days ago). However, the petechiae seem to be getting worse and appearing wherever he scratches himself. They are mostly on his legs, but he also has one "scratch" each on his back and neck. I will be calling the nurse practitioner tomorrow to see if we should bring him in. He has had no nosebleeds and his face, arms and torso and even lower legs are free of bruises, so i'm still hopeful that he can hold steady or improve...

When was his last count done?

Last count was a month ago. NP & doc agreed we could just watch him and he didn't need to come in for counts unless we saw concerning symptoms--namely, nosebleeds (he had very mild nosebleeds even at 1.9K) or blisters inside his mouth (which he has never had). I'll see what he looks like in the morning. If it weren't for the random petechiae from scratching, I wouldn't be concerned about his 5-6 bruises.

We're waiting to hear back about scheduling his next appointment, and in the meantime I'm on a crazy rollercoaster ride.

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.

I can get very anxious about bruising and other symptoms when my counts are low. I really can't imagine how hard it must be as a mom to deal with this. For myself, since I am very prone to anxiety, I find it better not to look for bruises or petechia. When my counts are very low, the symptoms don't have to be looked for-I get blood on my toothbrush, petechiae on my face not caused by scratching but just spontaneous, and bad nosebleeds. Then I go in for a count immediately and know it is time to treat. Would it be better for you to get his counts done more frequently than once a month? I know that is harder on a child as the blood draws can seem traumatic to them.

Thanks, dru. We're much happier monitoring than having his counts done regularly. He absolutely hates it. Going in now for a count, so will be back with some news soonish.

maria3132 wrote:

.. He also had some clear discharge from his nose yesterday ... which I was thrilled to see...

I dunno. Sounds like he is low but fine. I think they call it 'wet bleeding' that is concerning.

Hal, yes, that’s what I meant - I was genuinely happy to see clear discharge.
—-
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.

Maria - If it matters at all, I think that you are handling this extremely well! I know that you're not calmly sipping tea, but you do not appear to be frantic. Your actions prove that.

Good luck with the IVIG. Let us know!

Thank you, that is very reassuring to hear/read!

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!

Good luck with whatever you decide. I'm glad he is sleeping and comfortable!

We decided to go home in the morning. Hopefully docs will oblige without a fuss (so far they have been good about letting us decide without pressure).

Hope you got to go home. It sounds like both you and your son are handling all this well.

We did go home. Had a long chat with the head of the hematology department who threw everything on the table, from Nplate and Promacta to splenectomy. When we looked at him with a slightly raised eyebrow, he did admit he was getting a bit ahead of himself (it's been 1.5 months since diagnosis). Perhaps he knows something we don't... Going back to the clinic for a CBC on Tuesday.

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).

Maria - I don't think he knows something that you don't. If he did, he would be more persistent. Most cases resolve on their own. If they don't, you figure out which way you want to deal with it. You're doing great!