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TOPIC: 11 Years Old Son Just Diagnosed with ITP

11 Years Old Son Just Diagnosed with ITP 3 months 3 days ago #65170

  • th8899
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Hal, I absolutely agreed that Prednisone made his blood vessel less leaky. He is on 40mg Prednisone now and still waiting for Promacta to be delivered from a specialty pharmacy. I also scheduled an appointment with an infectious disease specialist at Children's National. From what I learned last 6 weeks, I still feel that my son has Lyme co-infection, such as Babesiosis, which is exactly matching his symptoms. Since Babesiosis is a parasite so Doxycycline won't do the job. Our hemo totally disagrees with me and he actually never heard about co-infection at all. Let us see what infectious disease specialist will say next week.

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11 Years Old Son Just Diagnosed with ITP 2 months 6 days ago #65406

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The whole family felt very frustrated today. My son's ITP has been going on for two and a half month now. Last three weeks he was put on 80 mg Prednisone and also finally get on 50 mg Promacta. He has no petechiae, no blood blisters in the mouth and no new bruises (his old bruises are not healing). We all thought his count is up at least a little bit. However, his CBC this morning is coming back 10K only. What can we do?? His Lyme coinfection tests were all negative. So infectious disease specialist told us to put Lyme behind us. Our hemo lowered the Prednisone to 60 mg, since my son's face puffed up so severely. He also ordered another dose of IVIG and is willing to give Promacta another 2 weeks. Anyone here has any other suggestions? Thanks.

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11 Years Old Son Just Diagnosed with ITP 2 months 4 days ago #65413

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I'm sorry you are dealing with this rollercoaster. Are they doing the counts manually? It's a good thing he is not bleeding or bruising. It's also good that the infection is now clear; if i remember, he is still only a month out from the Lyme diagnosis, so it may take a while longer for his body to figure out what's what. I hope IVig buys you a few weeks of normalcy, at least.

Others with experience with Promacta can probably speak to how long it took to become effective.

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11 Years Old Son Just Diagnosed with ITP 2 months 4 days ago #65416

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No, the count was not manual. They put the blood into a machine, which spits out the results in a minute. Yes, we just finished Doxycycline little over a month ago. Hopefully, it is what is holding everything right now. Thanks, Maria. How is your little one doing?

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11 Years Old Son Just Diagnosed with ITP 2 months 3 days ago #65426

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Sometimes it can take a few weeks for Promacta to kick in. Don't give up on it yet. If that doesn't work, you can still try N-Plate. Not having symptoms is a good thing even if the counts are low.

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11 Years Old Son Just Diagnosed with ITP 1 month 1 week ago #65521

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Oh pooh. Nothing from Promacta and steroids th8899? Even with 50mg of Promacta no less.

Time to go back to what is known to work? Go back to steroids and IVIG?

I think you mentioned in another thread to try Nplate? You know, there are some folks that do NOT respond to Promacta - and do definitely respond to Nplate. Maybe that is the case here?

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11 Years Old Son Just Diagnosed with ITP 1 month 1 week ago #65525

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Unfortunately Promacta is not working. He was on 50 mg along with 60 mg Prednisone for 4 weeks and count was 10k. Our hemo increased Promacta to 75 mg two weeks ago and taper down Prednisone to 20 mg since my son got severe moon face and gained 10 lb. it has been two weeks, I do not think Promacta works because my son still have blisters in his mouth. We will go back to his hemo this Friday. I think the next step is to try NPlate. If that is not working, then we will try Rituxan. Also I will ask hemo to test for H Pylori this Friday. It is because my son had a week long trip to Japan 6 weeks before his ITP. Just want to look into any possibilities.

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11 Years Old Son Just Diagnosed with ITP 1 month 1 week ago #65534

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Promacta would have been easy and is a common choice. I would not let this be an indicator for Nplate. Some people just don't respond to Promacta. One thing that has crossed my mind is that these folks are able to metabolize it in the liver before it can stimulate the bone for platelets. But, who knows.

20mg Pred and Nplate should get the job done.

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11 Years Old Son Just Diagnosed with ITP 1 week 3 days ago #65692

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It has been a while since my last update. We are entering 5th month now and I could only say ITP is "Weird"! My son was put on 50 mg Promacta for 4 weeks and then increased to 75 mg Promacta for the last 6 weeks along with 60 mg Prednisone. Two weeks ago his count was 5K. Our hemo declared Promacta and Prednisone are useless. So we start weaning off Prednisone and going through insurance for NPlate. Last Friday, we were at 30 mg Prednisone and 75 mg Promacta and count were 14K. Today five days later, we finally got NPlate and brought it to hemo office. Guess what? My son's count is 206K! So now what? Should we just stop Promacta and keep weaning off Prednisone? Do we need to weaning Promacta as well? Finger crossed his count could stay up. New year new hope :-).

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11 Years Old Son Just Diagnosed with ITP 1 week 2 days ago #65698

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Oh my th, that is wonderfully good news.
Pat yourself on the back, again, for sticking with the 75mg for so long. Nice. Six weeks on 75mg, that has got to be a record for time to response. You know, this now makes me wonder about others that have thought they didn't respond and went on to Nplate. Perhaps all the weeks with Promacta made them then respond relatively quickly to Nplate.

Several questions come to mind, that need rumination.
- did the higher dose of steroids prevent the immune system from resolving a flu virus
- does merely reducing the steroid dose cause the Promacta response
- is a lower steroid dose, say 1/2 mg per kg, required for a reduced time to response
- the Flu strain this season is H1N1, does that strain take longer for immune system to resolve than other strains
- will the count response oscillate, like user 'robert1959' did, until remission
- will steroids create a smooth count response going forward

Taking both steroids and Promacta now has risk of out of control counts. Since steroids can only be tapered so fast, the count has to be controlled with Promacta. Isn't the protocol dose rule for Promacta to reduce to 50mg if count is over 180 or 200? One never knows for sure how fast or slow things will go - as you now know, vast understatement here. May have to go to 25mg very soon.

A couple of questions. Can you fill me in again on Vitamin D he's been taking? Also, on Folate / folic acid? Or, just taking a multi-vitamin?

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11 Years Old Son Just Diagnosed with ITP 1 week 2 days ago #65700

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Hal,
By now, both our hemo and I don't have clue what worked. It could be Prednisone, Promacta, supplements or simply my son's immune system just decided to calm down. Who knows! Here is the list of supplements he took at the moment

1. 500 mg Vitamin C tablet
2. 2000 IU Natural Made Vitamin D3 (Was taking 1000 IU, I increased it about 3 weeks ago to 2000 IU)
3. Kirkland Super B Complex (Started about 3 weeks ago with increased Vitamin D3)
4. Garden of Life 5 billion Probiotic for Kids

Since I worried about interaction with Promacta, I gave all above to my son at breakfast. Also, I start and stop with Papaya Leaf Extract several times during the last 5 months. However, I found my son always got more petechiae and bruise when on Papaya Leaf Extract. I am not sure if it is just coincidence, but for safety, I stopped it. Starting today, we are on 20 mg Prednisone and 75 mg Promacta, we will go back to hemo office next Monday to see how things are going.

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11 Years Old Son Just Diagnosed with ITP 1 week 2 days ago #65701

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Thanks for the info. Good for future comparison reference when/if this happens again.
Oops. Left one possible influence off. A very important one. The evidence here is not a Flu virus, but rather, Lyme (tick bite) is the possible ITP trigger.
- did Lyme (tick bite) cause the protected time to Promacta response

If user 'Clia' ends up with a correspondingly long Promacta response time, my money is on H1N1 strain as the culprit.

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11 Years Old Son Just Diagnosed with ITP 5 days 7 hours ago #65739

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We were back to hemo office today for another CBC. Prednisone is down to 10 mg and Promacta is still at 75 mg. Platelets are up to 415K comparing to 206K just 5 days ago. Hemo told us to do 10 mg Prednisone every other day for a week, then just stop it. For Promacta, he lowered it to 50 mg. But I asked him if we should just stop Promacta since platelet count is over 400K now. He said it is ok and just lower to 50 mg and check back in 3 weeks. Maybe I should just follow his advise this time. By the way, does anyone has any information about the teardrop cell? I just noticed this test on my son's last test report, it shows "few". Not sure what that means and hemo never even mention it. Thanks.

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11 Years Old Son Just Diagnosed with ITP 5 days 1 hour ago #65744

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No, I wouldn't just stop Promacta, but lowering the dose is a good idea. Stopping it could result in a crash and you'd have to start all over again. His Prednisone is being tapered a bit too quick. He may experience withdrawal side effects.

I don't know what the 'teardrop cell' is, but if the doctor isn't worried about it, you don't have to be either.
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11 Years Old Son Just Diagnosed with ITP 4 days 15 hours ago #65746

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I'm many years older than 11 but I can offer 2 thoughts .
Firstly that is far too fast a taper. He needs to come off much more slowly. Maybe go down to 7.5mg a day for a while then reduce by 1mg/day each month which is standard pred. tapering protocol.
I can assure you steroid withdrawal is horrid. I would only wish it on my worst enemies. There is a wealth of info on this site regarding tapering.
I agree with Sandi about continuing Promacta. Personal experience tells me that trying to taper pred and find a suitable dose of Promacta is a long drawn out process.
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11 Years Old Son Just Diagnosed with ITP 4 days 4 hours ago #65750

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th8899 wrote: We were back to hemo office today for another CBC. Prednisone is down to 10 mg and Promacta is still at 75 mg. Platelets are up to 415K comparing to 206K just 5 days ago. Hemo told us to do 10 mg Prednisone every other day for a week, then just stop it. For Promacta, he lowered it to 50 mg. But I asked him if we should just stop Promacta since platelet count is over 400K now. He said it is ok and just lower to 50 mg and check back in 3 weeks. ...

Count doubling every 5 days? Wow.
It's all very strange to those unfamiliar. The 'row 2' response is truly amazing. Counts don't go up with steroids. Counts don't go up with IVIG. Counts don't go up with full dose Promacta. Frustration, followed by frustration, followed by frustration. Will nothing work? Now, magically, counts go up not just a little, but seemingly without control. Ack! What the hell happened?

I'm NOT saying this is going to happen, but, let's take a hypothetical. Suppose for a moment that counts continue to go up past 415 on 50mg. Now what? Well, this time the Doc will actually say: stop Promacta, let the count drop down and restart then. Here comes the dilemma. With no Promacta, the immune system turns back on with the same 'strong destruction' binge it had before. Oh no! Counts are 200 one week, crash to 5 the next. Lather, rinse, and repeat with 75mg again to get counts back up. No 'in between' level. What to do?

If you read through 'robert1959' this is roughly what happened. Extreme oscillation with several on - off cycles. So, let me just say ahead of time. If this sort of situation repeats itself here, in my experience, a low dose of steroids is the key to soften and prevent the oscillation. There is at least one difference though. Robert was on Nplate and your son is on Promacta. That difference alone may prevent the oscillation. I dunno. Just a precautionary.

On the check back in 3 weeks. Surely counts will be tested every week, right?

Good luck.

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11 Years Old Son Just Diagnosed with ITP 3 days 6 hours ago #65757

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Quick updates, my son is on 5 mg Prednisone along with 50 mg Promacta now. Knock on the wood, so far my son did not experience any prednisone withdraw symptoms. As planned, we will stop Prednisone next Monday. Hemo won't do any blood test or see us for the next three weeks. Honestly, if you ask me, I will say it is not Prednisone, Promacta or supplements. Likely my son just had a spontaneous remission. Otherwise, it did not make any logical sense. But ITP is not logical, no one will be 100% sure what happened. Only time will tell. We are cautiously optimistic for now.

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