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TOPIC: Son at 6 month mark with ITP and not sure what to do

Son at 6 month mark with ITP and not sure what to do 1 year 2 months ago #62094

  • southerngirl90
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Our 7 year old son was diagnosed in June of this year (2017) with ITP. We noticed excessive bruising and red dots and made an appointment with his pediatrician. His pediatrician did a CBC and his platelet level was 2. She contacted Hematologist and they advised admitting him to the hospital. His hemaglobin, white blood cell count, etc were all within normal range. He stayed in the hospital for 3 days. Initially the doctor stated they would keep him until his count reached 10...luckily they didn't as he would have been in the hospital for months. Up until the last 2 1/2 months his count has not gone above 10. Last month it got as high as 27 but fell back down last week to 16. We tried a four day high dose of corticosteroid about 1 1/2 months in but it only went up for one week and then dropped back down. We are blessed that he has not had any issues with bloody noses or blood in stool... nothing like that. The bruising was pretty scary at the beginning as it would look like someone put an egg under his skin. Basically bruising is the only side effect he has right now.... that and since his body seems to be trying to do something he is more tired than normal.
So today we meet with the doctor to discuss the options again. I am really worried, although I know we are blessed because he doesn't have the bleeding issus the nasty bruises are pretty scary. Knowing we are at the 6 month mark next week I just don't know if we should try something again to help his count go up. I have been doing my best to be patient and let his body do what it needs to but I am worried that the longer this goes on the more likelihood that it will become chronic. From what I have read there is no "cure" for this. There are things we can try and they may or may not help his count go up. So how do you make the decision on whether or not to try something... to do... something. I know there is no magic answer anyone can give I am just so tired of feeling helpless and watching my child not be able to play on a playground... run with his friends. My biggest fear is that his school gets complacent and doesn't watch him like they initially did and they let him do something that ultimately gets him hurt. With no other side affects than bruising and those are mostly hidden by long pants and shirts now it is easy to forget what is going on inside of my son's body.
I guess here are my worries.... 1. If we do not do anything and this goes on for 3-4 more months with no real progress will we be kicking ourselves because we didn't do anything and this becomes chronic. 2. Since he only has the bruising do we take a chance on putting him through something that could make him feel worse? How do parents keep from losing their minds?

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Son at 6 month mark with ITP and not sure what to do 1 year 2 months ago #62103

  • alisonp
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Chronic for ITP doesn't mean quite the same thing as for other illnesses - for ITP it just means that it's gone on for more than a year, not that it will continue forever. Treatment may or (probably) may not help that. What you need to balance here are the risks of treating or not treating. On the no treatment side you have none of the considerable risks or side effects of treatment - I am particularly talking about immunosuppressants here, but there are also clotting issues with the TPO, and infection issues with a pooled blood product like IvIG. You also don't have to 'medicalise' your son - fewer blood tests, no tablets or regular injections, less damage to veins, fewer days off school etc. On the treatment side you've got a lower risk of a bleeding problem (although it sounds like your son is lucky not to be a bleeder). He might also be able to have a more normal day to day life. And my sons Dr says that any treatment given regularly enough is likely to increase the probability of remission. It's also good to know that something works if there is an emergency.
It's a personal choice but we chose not to treat. My son was diagnosed at 10, although we suspect he had it long before then, and is now 19. He sounds quite your son in that he had very low counts for a long time (under 15 for most of the time) and he wasn't a bleeder. In the last year his count has been a lot better and his last test was a miraculous 48. It's worth saying that he's had a very normal life for the last decade or so. He only gets tested and sees the Dr every six months or so. Other than that he pretty much gets on with life as normal. He plays sport, cycles, swims..... With school I found it was worth reminding them periodically - at the beginning of each school year I would go in and make sure all the staff knew about the potential seriousness of any injury and what symptoms to look for. My son has been treated on a couple of occasions - once because he needed a minor operation. Because of this, I know that he reacts to IvIG and romiplostim if he needs to raise his count in an emergency which is quite reassuring.
I hope you are able to reach a position that you and your son are happy with. Remember that you can change your mind at any point and either start treating or not treating. Good luck!
The following user(s) said Thank You: southerngirl90, maria3132

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Son at 6 month mark with ITP and not sure what to do 1 year 2 months ago #62105

  • 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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Hi. I'm glad you found us.

Try to forget about the six month date. It doesn't mean anything. As Allison said, it doesn't mean that your son will have ITP forever. It just means that he's had it longer than six months. 'Chronic' is a scary term but children can go into remission at any time. I've seen it happen over and over again.

According to studies that I have read, children seem to go into remission at the same rate whether there is medical intervention or not. There isn't anything that you can do or shouldn't do to make that happen. If you should decide not to treat him, that doesn't mean that you are preventing remission. What treatments did they try while he was in the hospital? What is his doctor saying about treatment?

Many parents choose not to treat because of the risk of long-term side effects of the treatments. That is an acceptable way of dealing with ITP as long as you are comfortable with it. I know it's hard to make that decision because no matter what you decide, you will ask yourself "what if". There is no way to predict what will happen either way so you just have to do what you believe is best.

If you are concerned about the school becoming complacent, ordering a Life Alert bracelet is one option. Most people don't know what ITP is (even some paramedics), so using the words 'low platelets' or 'bleeding disorder' might be more helpful.

For now, just take one day at a time and try not to stress over the future. Anything can happen with ITP. Read as much as you can from credible sources and learn. Knowledge is key.

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Son at 6 month mark with ITP and not sure what to do 1 year 1 month ago #62340

  • Ph7512
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I’m going to guess you didn’t Have a 6 year old with ITP

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Son at 6 month mark with ITP and not sure what to do 1 year 1 month ago #62549

  • southerngirl90
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Thank you so much for your response. I am just sorry it has taken me so long to respond and thank you. Your post helped me tremendously! Out of all the people I have talked to around me only one person has ever heard of ITP and it was her father who had it so it was helpful but things are so different for adults and children.
Sometimes it just gets a bit overwhelming and I feel like I should be doing something to help him. I am so happy to say his count last week was 57! That was news we really needed to hear. Thank you for sharing your story about your son and for your suggestion about school. We have been keeping in touch with his teachers and the school nurse an update them on his counts so that they are aware and it also keeps it in their minds. I hope your son continues to do well and thank you so much for easing this mom's mind.

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Son at 6 month mark with ITP and not sure what to do 1 year 1 month ago #62550

  • southerngirl90
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When he was in the hospital the only thing they did was monitor his count. They had initially told us that they would not release him until his count was 10. So glad they did not keep with that as it took months for his count to even get that high. The only treatment he has had was a 4 day high dose of cortico-steroid. His count went up for a week but then went back down.
When I met with the doctor after my post he advised if we wanted to try something we could but his recommendation was to wait. The fact that my son hasn't had any bleeding issues, even after losing 2 teeth during this, we decided not to do any treatements. The concern that the treatments could make him so sick and that may bring his count up temporarily, if at all, also helped us decide not to treat for now. Thank you for the life alert suggestion. We got him one and made sure to put "low platelets" and no NSAIDS on it. I am so thankful for this site. It has been so helpful to me and the people are so wonderful. Thank you so much.
The following user(s) said Thank You: maria3132

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Son at 6 month mark with ITP and not sure what to do 1 year 1 month ago #62551

  • 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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I'm glad things are going well for you so far. Thanks for checking in!

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