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TOPIC: 11 Years Old Son Just Diagnosed with ITP

11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64848

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7 days ago I never heard the term ITP in my entire life. My son is 11 years old and in good health. He is an active soccer player and karate black belt. Last Wednesday before bed, he mentioned to us that he just noticed a lot of red dots on both of his legs. We thought it is an allergic reaction and took him to local ER right away. ER doctor immediately told us it is not rash. It is petechia! Then they draw 6 tubes of his blood to run bunch of tests. Hour later ER doctor told us all his blood work come back normal, but his platelets is only 5k. ER doctor immediately contacted Children's National Medical Center at DC, one of pediatric hematologists on call told her not to send my son immediately and just wait until Friday for a outpatient clinic appointment since he does not have any active bleeding. Next morning, my wife and I did not feel comfortable and took him to his pediatrician. She tested his blood again. It was only 2K. She felt shock and sent us directly to Children's National regardless what hematologist said. My son is admitted into Children's National and started IVIG on the same night. Next morning only 7 hours after IVIG, his platelets was up to 11K. Then they tested again about 18 hours after IVIG, it went up to 23K. So they discharged us to home. The following Monday (about 4 days after IVIG), we followed up with hematologist at outpatient center and his platelets drop to 4K again. Hematologist put him on prednisone now. It has been little over 48 hours since he took the first dose of prednisone. We noticed that he has a lot more petechia now. It was only on his legs. Now it is on his body, arm, face and even mouth. We called hematologist and he seems not concerned and told us just come back on Friday for follow up. I am so glad that I found this web site and has read through a lot of posts here which are really helpful. Does anyone know how long it takes for prednisone to work? Is it normal to have more petechia after starting treatment? Also hematologist told us only 20% people does not respond to IVIG. Is that a bad sign that my son have a more serious ITP? Thanks.

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64849

  • Sandi
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Hello - I'm glad you found us! It can take a few days to respond to Prednisone so in the meantime until that happens, symptoms can get worse. Some people do not respond to Prednisone at all (same with IVIG). There are other treatments though, so if these don't work there are others to try. It doesn't necessarily mean that your son has ITP that is more serious, it just means that you haven't found the right treatment yet.

Low counts are not necessarily an emergency. Symptoms matter more. A hematologist is more familiar with ITP and will be calmer about it than a Pediatrician or ER doctor. The best thing you can do now is just try to be calm and patient. Watch him for symptoms of bleeding. Does he have any bruising?

2k and 5k are basically the same thing. Counts fluctuate constantly so that is not much of a change. It's even possible to get two different numbers from the same blood sample. The analyzers are not 100% accurate.
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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64853

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Sandi,
Thanks for your quick reply. We are new to this and really worried. Especially when we heard that IVIG works for most people but not make a slight impact on our son. He does not have bruise, only petechia, but it is all over his body and looks horrible. We are seeing our hematologist on Friday and will keep this thread updated. Thanks again for your words.

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64862

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th8899 wrote: 7 days ago I never heard the term ITP in my entire life...

Yes, the whole ITP thing is a real shocker. One day all is fine, the next, not so good. Thank goodness for the Internet to help bridge the void.

That's a lot of points you covered that I often ask about. Perhaps you have seen my thread No Response to IVIG, ACK ! . Sounds consistent. But of course, that thread describes adult ITP. For children something like 60 to 80% of ITP cases self resolve in less than 6 to 12 months. With that statistic, you can see how pediatric hematologists may not be anxious about treating your son. Never the less, per the thread, B-complex vitamins / Folate is an easy thing to get in his diet. For adults, Promacta or Nplate, with a skosh of steroids, should give a good response and quickest resolution.

Hope things turn for the better, quickly.
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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64867

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Most people do have a response to IVIG but it is a very temporary solution. It usually only lasts a few days or weeks at best. It's not a good long-term solution since it takes so long to administer and has short-term benefit. I never even used it for that reason.

Yes, please keep us updated. I hope you have better news tomorrow.

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64876

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I just got a copy of my son's blood test at ER. It shows "Immature Granulocytes" = 0.4. I googled it and it seems that this number should be 0. If it is anything above zero, it indicates a problem with bone marrow. However, neither ER doctor nor our Hematologist ever said anything about this. Does anyone know what it means? Thanks.

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64877

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I wouldn't worry about it. It's a type of white blood cell that could indicate a possible infection. It's not unusual to have CBC's that are not perfectly normal; mine are never all in range. If the doctors are not worried about it, there probably isn't cause for concern.

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64886

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We just came back from our hematologist's office. My son is not responding to prednisone as well. His platelet count is still at 3K. We talked with hematologist and he assured us that he ran all the tests and ruled out all other diseases. My son has no viral infection, no any positive markers for lupus, leukimia, etc. He has confidence that it is ITP. He said he usually will wait 3-4 weeks before starting second line of treatment. However, with my son's low platelet number and wide spread of petechiae, he admitted us again into Children's National at DC to start Rituximab and another dose of IVIG tonight. My wife and I are very nervous and finger crossed that he could recover soon. What should we watch out for Rituximab treatment? Thanks.

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64890

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This one is my bad. I misread the content online. The normal range is 0-0.5%. So 04% is normal.

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64895

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Yikes. Rituxan is a heavy duty treatment. It takes a while to kick in....4 to 12 weeks after the first infusion. Most reactions occur during the first treatment so if he gets through that, he could coast through the rest. Other side effects are rare but can be bad.

Have you read the insert for that?

www.rituxan.com/
www.rituxan.com/#safety-information

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64897

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Yes, I knew. The side effect looks horrible. So far we tried one dose of IVIG and 80mg Prednisone per day for 5 days, there are zero effect on his platelets. His petechiae are getting lot worse comparing to 7 days ago, which cause concerns for our hematologist. We just arrived at Children's National at DC and talked with hematologist again and he agreed to try one more dose of IVIG tonight and discuss treatment again tomorrow. Do you have any suggestions? Any others little safer treatments to try? Also is that safe to take wait and watch route? Since this is just first week of ITP. Other than petechiae, he does not have any active bleeding. Today he had a nose bleeding which stopped in just couple minutes.

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64899

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I'd suggest that you read and learn about all of the treatments. I know you feel short on time, but IVIG might buy your son a few days until you can make a decision. Rituxan has about a 50% to 60% response rate and from what I've seen here, people tend to respond to Rituxan if they have had a response to Prednisone. I've been here nearly every day since 1998 and I pay attention.

Read about Promacta and N-Plate. They have better response rates and fewer side effects. Promacta is a daily pill and N-Plate is a weekly injection which is the main difference between the two. Your son is so young and it's a shame to hit his body with so many medications. I'm sure the decision is very hard.
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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64902

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Sandi,
Thanks so much for your advise. My wife, my immediate families, and I are all spending hours everyday on reading through all the materials online. I scan through most posts in this forum related to children. I also looked at HAL9000's interesting treatment tables. Looks like for a person not responding to both IVIG and prednisone, Nplate is a very good treatment. I will discuss with hematologist to see if it is safe to just wait and watch. If not, I will ask him to try Nplate first. Thanks again for all the information. This forum is a lifesaver for us. One quick question. What is considered as a severe bleeding risks? Does increasing petechiae is a bleeding risk? All posts I read indicate that if it is only petechiae and mild bruise, it should be fine to wait and watch regardless of platelet count. But our hematologist seems very concern about my son's petechiae since it is everywhere.

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64905

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The best way that I can answer that question is to say that it's not so much the petechiae that is the concern, it's the fact that it keeps getting worse that is the concern. People can have petechiae and be just fine, but any symptom that gets progressively worse should be watched carefully. I've been at 3k, had petechiae and went about a normal day at work, but it wasn't spreading. Your description of your son 'looking terrible' due to petechiae might be worrisome enough to treat. I can't see him to judge that but I'll take your word for it. The fact that his nosebleed stopped quickly is a good thing though.

I am a huge fan of watch and wait but I wouldn't advocate for that based on the progression of symptoms. It should start to fade a bit after IVIG even if it only takes his count up a little bit. Fingers crossed!

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64910

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Just want to give a quick update here and also serve as my own records. My son had another IVIG done last night finished around 2am. Then hospital draw his blood at 6am (only 4 hours after IVIG) for CBC, which comes back at 23K. Hematologist said they will do another one at 4pm, if his platelets could keep there, then they will send us home and hold off on Rituxan. Does that mean my son respond to IVIG? It went from 3K to 23K in about 4 hours. Hopefully it could hold for a little while. Thanks for all the information I got here, this is really a wonderful site for people with ITP.

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64912

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It sounds like he had a minimal response which is better than none. It might be enough of a bump to put him into a safer range and curb symptoms. I hope the second one does more for him....good luck! Keep us updated!

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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64913

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Another quick updates. 14 hours after IVIG treatment. Now his platelets is at 59K. So we are going home now! Now I am a bit confused. How come IVIG did not work first time and 4 days of Prednisone also did not do anything. Now all the sudden second IVIG seems working. I knew IVIG is only temp solution. But at least now I knew there is option there if we need it in some situations. Also our hematologist told us just stop Prednisone cold turkey. He said my son only took it for 5 days and no need to tapering it off. Going home now and keep our finger crossed. Thanks for all the support.
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11 Years Old Son Just Diagnosed with ITP 5 months 2 weeks ago #64915

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There is no real rhyme or reason sometimes for count responses. Maybe more IVIG this time? Maybe the combination of IVIG and Prednisone? I don't know.

I'm glad you are going home. Use this time to make a plan for the next step (should you need it)!

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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64918

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Who are you seeing at Children's? We've seen almost every hematologist and a few NPs. While all have been good, I would highly recommend NP Christine Guelcher and Dr. Michael Guerrera. Feel free to PM me. Christine in particular was super thorough.

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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64919

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Yay for 59K! If you click through to my thread you'll see that my son's first IVIG was least effective, the double dose a week later was better, and the subsequent one a month later even better. As above, feel free to PM me and we can even have a chat by phone if you'd like.
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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64933

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Maria,
Thanks for the info. We are seeing Dr. Jay Greenberg and actually we have another appointment in the morning to clear my son for school on Tuesday. He has been out of school since this happen on 09/26. Keep our finger crossed. It is hard for us, but we are learning it every day.

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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64937

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Great. We haven't seen him (yet?) but it is a very good team.
It's still very early on. It was a roller coaster ride for us for a few months - still is, to an extent, but between getting more familiar with the disease and counts stabilizing as of last check, we're not nearly as stressed out. How are your son's symptoms today?

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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64938

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PDSA forum is really helpful. We are lot calmer comparing just few days ago. Today other than some petechiae on his leg, all other petechiae and small bruise on his body and face are fading away (quicker than I expected). First time after IVIG, I actually saw his symptoms getting worse. At least, it gave us a little bit peace of mind by knowing he is responding to the treatment. Dr. Greenberg was almost put him on Rituximab. We knew we are not out of wood yet, but we will deal with it one day at a time.

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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64940

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That's a great attitude. Good luck today.

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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64941

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A quick update and a new development. 2.5 days after second IVIG treatment (1 single dose), today my son's platelet count is 151K. It makes us calm down a bit more. We knew we are not out of the wood yet. But at least it is a good sign. During the visit, I mentioned to our hematologist that since my son is diagnosed with ITP last week, I noticed about half dozen large red circle on his body and legs. It is not raised and just a red ring on the skin. It immediately caught his attention and he even asked another NP in clinic to take a look. Then both of them told me it looks like Lyme disease. He said he will send my son's blood sample to screen for Lyme disease. But the rule is if suspect it, then just treat it and not wait for the test result. So he prescribed a 21 days course of antibiotic for him. I remembered I saw it in this forum someone said Lyme disease is one of the trigger for ITP. Maybe we found the cause??

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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64948

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It's possible. Any type of bacteria or virus in the body can trigger ITP. Just be aware that antibiotics can cause counts to drop, so hopefully that won't happen.

Great news for today though!

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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64949

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Sandi, you are right. My hematologist is also aware of this. He said usually amoxicillin may affect platelet count. But Doxycycline won't. Hopefully he is right.

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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64952

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My count held when I took Doxycycline but it did make me extremely nauseous
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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64953

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Great news on the counts. Make sure he drinks lots of water with Doxycycline - i took it a lot for acne over the years and learned the hard way that it can give you an ulcer if you don't give it enough water to dissolve (1 glass is plenty).
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11 Years Old Son Just Diagnosed with ITP 5 months 1 week ago #64955

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Thanks for the advise. I think I made a mistake to let him take Doxycycline with milk this morning. School nurse just called me and said my son has a stomach ache. He felt better now. I looked up and found that Doxycycline cannot be taken with milk or any dairy products. I think our hemo is not familiar with this drug and told us to take it with food or milk.

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