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TOPIC: 7 year old daughter newly diagnosed since Nov.2010

7 year old daughter newly diagnosed since Nov.2010 8 years 8 months ago #15066

  • kms2013
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Alicia was diagnosed in late Nov. 2010. since then she has been on steroids and has had 2 infusions of ivig. We have been back a fourth to the hospital about 7 times in the last past 5 weeks her last blood count two days a go was 19,000. She is having a hard time coping with this, and as her mother I am scared. How do I help her cope with this when I am having a hard time my self?

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Re: 7 year old daughter newly diagnosed since Nov.2010 8 years 8 months ago #15072

  • 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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It's hard, I know. My daughter doesn't have ITP (I do), but she was diagnosed with Graves Disease. I had a harder time than she did. I was as normal as I could be around her, but lost it when she wasn't there. My daughter was in her early 20's though. I can tell you, it never gets any easier!

Just explain things as simply as you can and tell her that she will be fine. Tell her you don't like what she has to go through, but it is necessary. Adjusting is hard and takes time.

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Re: 7 year old daughter newly diagnosed since Nov.2010 8 years 8 months ago #15088

  • kms2013
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Does it get eazier with time? In the last past two months I have gotten demoted in my job, due to having to take Alicia to the doctor and having to take her to the hospital. I find myself worried all the time. Her count has never been over 40,000. Does it ever get to the point where it can be
controlled?

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Re: 7 year old daughter newly diagnosed since Nov.2010 8 years 8 months ago #15090

  • alisonp
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I can only speak for myself. Yes, it gets easier, you will worry less, hospital visits will get fewer. Doctors seem to get "bored" with seeing them after a while, and know that while their count is low, the kids are stable. I know that the first six months, my son's count was never over 20K, and then it was higher for a while, and now we are back to the never over 20K. I worry far less this time round. Its still annoying but manageable. Keep hoping too - one day it WILL go away!

Ali

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Re: 7 year old daughter newly diagnosed since Nov.2010 8 years 8 months ago #15092

  • tacmom
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My daughter was 8 when she was diagnosed, but we think she's had ITP since she was 6 due to the symptoms that we ignored earlier just because she was so active and the petechiae "didn't hurt". Caitlin is now 13 and it really does get easier with time. The best advice I have for you is to read and research all you can about ITP. It was the stories from other moms that really got me through the first few months. Caitlin never went above 35 her first year and we did not treat. There were even times that she was having bleeding symptoms, but it just wasn't bad enough to need a treatment. We just used ice to stop her bloody noses and tried to keep a closer eye on her when she had wet purpura (bruising/petechiae inside her mouth)or alot of new bruising.

The main thing to watch for is bleeding in her urine or make sure her bm's are not black. If she has a really bad headache or hits her head hard with lower counts, take her in to get checked to be on the safe side. The other thing is bloody noses...if they last longer than 15 minutes, sometimes it's a good idea to give the dr a call. We always made a phone call to the dr and they would ask us a list of questions to see if she needed to come in. Only twice, did we have to go straight to the ER due to bleeding symptoms.

Try to allow her to have fun and don't let her see you be upset. She can ride her bike, just ask her to wear a helmet. She can play at the park, but make sure she doesn't hang upside down on the monkey bars unless you are there to catch her, etc. Let her have her friends over and maybe do some safer activies (coloring on the sidewalk, singing to some silly music, etc.) when her counts are really low. Hang in there and feel free to ask questions along the way! I hope your daughter falls in the statistics where 80% of children have acute ITP and it goes away after 6 months to a year. If not, you learn to adjust and ITP becomes more of an inconvenience rather than something we worry about on an everyday basis. (It gets in the way when things pop up like dental appointments, wanting to go to the amusement park, etc.)
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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Re: 7 year old daughter newly diagnosed since Nov.2010 8 years 8 months ago #15452

  • 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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Yes, it gets easier. The chances of remission with ITP are very good, so you may not have to deal with this forever. It might seem that way now, but you never know what tomorrow will bring.

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