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TOPIC: 16 month old son diagnosed three weeks ago

16 month old son diagnosed three weeks ago 8 years 11 months ago #5801

  • momninflorida
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Hi everyone - My toddler son was just diagnosed about three weeks ago with ITP and needless to say, the entire family is very nervous!

When he was admitted to the hospital his count was at 1,000 and after a treatment of IVIG he was up to 49,000 within five hours of the treatment completing. He was checked again five days later and the count was up to 125,000 but I knew that many times IVIG only lasts a couple of weeks. Sure enough at the two week mark I saw a petechiae on his face and a small patch on his back. The next day he had a tiny bruise and when he sneezed there was a tiny bit of blood in the normal looking mucus, which has happened since about once a day during the last week. He was tested again and his number went down to 22,000. Two days later and it was at 20,000.

We are now a week out from the 20,000 mark and he will be tested again tomorrow. In the meantime he has looked pretty good with small patches of petechiae here and there where there has been some pressure and a few small light blue/brown bruises but nothing like he looked when this whole thing began. I have noticed his bruises are healing and even the patches of petechiae go away in a few days but at the same time, more petechiae and bruises will appear, albeit small ones, if he falls or there is pressure applied to his body. Would there be healing with numbers under 10,000? Is it normal to have bruising and petechiae continue appearing and at the same time have others healing within a few days?

I know that most kids this age are acute but I can't stop worrying! It is so difficult to keep him from running and I just keep checking his body over all of the time for new marks.

Thank you for any info!

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Re:16 month old son diagnosed three weeks ago 8 years 11 months ago #5822

  • mrscookers
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Hello...Sorry to hear about your son. I too have a little boy diagnosed about 4 weeks ago now. His levels got down to 2000 and we did IVIG, and for him it only lasted a week and his levels dropped down to 2000 again. We are currently on week 2 of steroids and we have one more week to go. The steroids seem to be working, his levels last Friday were 108,000. Hoping that once he gets off the steroids his levels will stay up there, but we will see. My little boy just turned 11 months old two days ago, he took his first steps the day before he was diagnosed with ITP.

With Jack some of his bruises would take a long time to go away, in fact he still has a bruise on his back from about 3 weeks ago. Jacks levels were below 10,000 for about a week before we decided to treat him, and the petechiae and bruses would heal, and yes new ones came up also.

I know how you feel...completly helpless, you want to take his place, it is so hard to see our little ones sick. I try to take each day as it comes, and every morning afternoon, and night I look Jack over to see if there are any new "marks" on him. So far so good with the steroids he is on.

I am also very new to all of this, and I wish that I could give you more information. I hope that your son will heal quickly and you won't have to worry about this any more.

(((hugs)))
mrscookers

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Re:16 month old son diagnosed three weeks ago 8 years 11 months ago #5844

  • momninflorida
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Thanks for replying and sorry that your son is also going through this. It is so hard to see them crying when blood is taken and yes, I wish I could take his place.

Today we had blood drawn again and it is now at 18,000, down from 20,000 exactly a week ago. The hematologist wants to wait two weeks to see us again for another draw. I think two weeks is a LONG time and I will be so nervous but at any sign of a quick drop I will bring him in. I am not sure if I should be sad or glad that the platelets only fell 2,000 in a week. The IVIG usually has a peak around 7-10 days and then falls, which is exactly what happened to us. Right at the two week mark he fell from the 125,000+ to 22,000. And now 1.5 weeks later it is at 18,000. The hematologist wants to hold off on treatment but if things go below 10,000 we will do another round of IVIG. I really feel happy with the wait and see approach but at the same time having my baby boy walking around with counts so low is scary!

Sorry for the rambling but being so new to this is scary and I am trying to make sense of the numbers.

I hope your son recovers quickly too but in the meantime you're not alone. BTW - did your son have a virus a few weeks before showing signs of ITP? Ours did exactly two weeks prior and four weeks prior he had his MMR vaccination.

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Re:16 month old son diagnosed three weeks ago 8 years 11 months ago #5846

  • alisonp
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Hi, I haven't got a small son (mine is 11), but I just wanted to reassure you that for most kids, ITP doesn't result in anything worse than a whole lot of bruises. Yes, bad things can happen but it is very rare. If your son has very few symptoms, chances are that he isn't going to bleed unless he gets really low - I know from this board that there have been a fair few kids walking around with counts of 0 or 1 with no bad effects other than possibly worrying their parents into an early grave! In my experience, getting hung up on numbers is going to stress you out. There isn't a whole load of difference between 5 and 15 or 22 and 18 - that difference could just be due to the sample. Stable is good though.....

Heres hoping for a quick resolution to your kids ITP, Ali

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Re:16 month old son diagnosed three weeks ago 8 years 11 months ago #5860

  • mrscookers
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Yes, Jack did have an ear infection a week and a half before he started his symptoms of ITP. We will test agian in the morning to see what his levels are this week. We have been going every week to have them tested, unless I notice alot of patechiae, then I bring him in to be tested early. I have an order from his doctor at my local hospital to go in when ever I may need to.

We held off on treatment for Jack for about 1 week to see if his body would do the work on its own, but when his numbers came back as 2, we decided to do the IVIG.

Jacks doctor told me that the numbers change almost every minute, it just depends on when it was drawn. But it still is scary, VERY scary when they are low.

I am very lucky with Jack. He doesn't cry when they poke his finger, he does so good. Even when they drew blood from his arm he didn't cry. What bothers him the most is when I hold him still. He is now climbing onto everything. This kid has no fear.

Two weeks is a long time to wait. If I were you I would ask them to draw next week, that would drive me crazy not nowing.

I live 4 hours away from Jacks hemotologist, and from a hospital that could help him if his levels were low and he took a bad fall. That is the reason why I insist on knowing his numbers.

I hope your little guys numbers climb HIGH!! :cheer:

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Re:16 month old son diagnosed three weeks ago 8 years 11 months ago #5910

  • momninflorida
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Ali - thanks for the reassuring information! I know that this is usually a benign disorder but considering just four weeks ago I had never heard of it, it has certainly made me fearful.

MrsCookers - that's great that Jack doesn't cry during blood draws. Ethan starts to cry when he sees the band they put on his arm and I think the worst part to him is being held down. They usually have to bring two nurses in to contain him because he fights so much, it is just awful to watch! I know that two weeks is a long time but I think I will just watch him very closely and wait and see. I hate to put him through more trauma and if his numbers are about the same there is nothing they will do but wait. Luckily we are only about 20 minutes away from a major children's hospital so if I feel the need to rush him in I can.

I just can't believe it has only been four weeks since his diagnosis...it feels like months already. Fingers crossed our little ones see this pass soon!

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