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TOPIC: (cont) w/ 14yo daughter....

(cont) w/ 14yo daughter.... 9 years 4 months ago #14932

  • tinagbb64
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Sorry....still trying to figure out how to post....is it normal for other illnesses to occur....did the ITP cause the lupus....i feel so confused and so worried about her....she has good days...happy .. sad...just so many things that neither one of us understand...would like to hear any suggestions....comments....anything...:(

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Re: (cont) w/ 14yo daughter.... 9 years 4 months ago #14933

  • srunge
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Hi,
I have a 14 year old daughter with ITP also. She got it a month before her 13th birthday so it's been over a year now. We have also done the roller coaster ride of emotions and doctors visits. She has been diagnosed and then undiagnosed with Lupus. ITP is a symptom of Lupus, Lupus can show up in the blood as well as various other parts of the body. Emmy, my daughter has ITP and a positive ANA so we also see a rheumatologist. It's good you found this site it is a wealth of knowledge and I visit it everyday. I was just like you when Emmy was diagnosed I had no information about ITP or Lupus and I immediately thought the worst, I was sooo scared for Emmy. But I have to say it does get easier and so far we are blessed that Emmy has no other symptoms of Lupus at this time.
We tried various medications to keep her platelets up, she finally got a remission from Rituxan, it's been 8 months since her last infusion. Emmy is very active and plays elite soccer so it was important to her that she was at a safe level and able to play.
I'm so sorry for you and your daughter its so not fair that our teens girls have to go through this, they have enough to deal with. You are in my thoughts and prayers
Shauna

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Re: (cont) w/ 14yo daughter.... 9 years 4 months ago #14935

  • tinagbb64
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Thank you sooooo much for responding and your thoughts of prayer......i know things could be a lot worse believe me...I have come back and forth to this site and finally decided to ask....but your response was definitely a positive for me and i will let my daughter read it so she can know as well....i know that not all respond the same way and they are talking about the retuxin as a matter of fact we an appointment tomorrow the hematologist and to get her blood work done....last week on monday she was 74k and then friday at 40k...so i hope they havent gone too much lower....again thank you....

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Re: (cont) w/ 14yo daughter.... 9 years 4 months ago #14947

  • tacmom
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Hi, my daughter is 13 and she has also been diagnosed with both ITP and Lupus. Once you get the Lupus diagnosis, ITP becomes secondary. Caitlin's rheumy put down UCTD on paper because she doesn't quite have the 4 criteria needed for the diagnosis. She has 3 of 11 of the criteria. Caitlin has had ITP for over 4 years now but we suspect she's had ITP for as long as 7 years. She has had the UTCD diagnosis for a little over a year. About six months after she was diagnosed with ITP, her hematologist ran an ANA and a few other tests and the ANA was positive with a high titer. But due to Caitlin not having joint pain or any of the rashes, they didnt worry about it. Then she did Rituxan last year. She did not seem to have any response at all and ended up having a reaction to the 3rd infusion so they did not do more. We were headed towards having her spleen removed so her hema wanted us to follow up with a rheumy first to make sure nothing else was going on, which is how we got ti where we are now. Caitlin does a treatment where she gets a shot every week and does very well with this. (Nplate). She is also on Plaquenil for her UTCD/Lupus to try to prolong/prevent any other symptoms from popping up. Good luck with everything. I truly hope your daughter doesn't end up with the official diagnosis of Lupus. Feel free to ask any questions!
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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