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TOPIC: Sudden Change is Tough

Sudden Change is Tough 6 years 3 months ago #42370

  • Vogelmom
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:( 11 yr old daughter diagnosed ITP 3 weeks ago. In hospital for second round of IVIg. tough to accept how this happens so sudden for what we considered such a healthy active child, but here we are. This site and forum has been such a great resource. Still very worried about what is to come, but hold hope we fall into the acute and her body will stabilize at a safe level soon.

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Sudden Change is Tough 6 years 3 months ago #42407

  • 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 Vogel, sorry to hear about your daughter's diagnosis. Adjusting to the ITP diagnosis and the ups and downs that go with it is the hard part. Eventually, you will adjust and it won't seem as upsetting as it does now. You still do have a healthy child; she just has platelets that are lower than normal.

Many children are acute, but even chronic does not necessarily mean forever. Chronic just means that the child has had ITP longer than a year. Many, many children have battled ITP for several years and then suddenly have a remission that lasts. My sister actually had ITP when she was 16. She was on and off of Prednisone for a year and then went into remission and has been there since. She is now 48 years old and has never had a recurrence. Remissions can happen at any time.

IVIG is usually temporary and does not cause remission, but it is a treatment with few long term side effects that can be used to buy some time for a while.

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Sudden Change is Tough 6 years 3 months ago #42426

  • Keli
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Hi there,
I just wanted to let you know I completely relate. Our son had always been just so active and normal and healthy and hardly ever sick and then about a year ago he started to be covered in bruises all the time. From experience i wanted to let you know to BE SURE to let her school know whats going on. When Zach was first diagnosed at the end of last summer he did a treatment of IVIG and got better so i didn't think to tell his school. I thought the whole thing was a blip on the radar and over with. Little did we know he was chronic and when his platelets tanked again and he was covered in bruises his teacher called CPS :(
I can't blame her because I was an idiot and didn't fill her in. But we were completely cleared after they talked to his doctor but from now on I'm going to have a sit down meeting with his principle, school nurse and all his teachers so they are all completely filled in and know what to expect. There will be lots of doctor
s appointments and missed days due to his Rituximab treatments and special allergen free diet.

This is all new to us too. I don't know if you pray but it helps me. Thank you Sandi for the hope, I have met people who had ITP as a child and haven't had a recurrence in decades. Its funny how this was something that I had never even heard of or knew that people got, but since Zach got diagnosed with it I have met two random people just out and about that were like 'oh yeah I had that when I was a kid!' (not to mention all the people on this site!)

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