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TOPIC: Really worried

Really worried 9 years 1 week ago #3146

  • CRiss05
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Hi my name is Carissa, my daughter Lily was diagnosed with ITP about three weeks ago. She is 21 months old. I am begining to get really worried. When she first got diagnosed she was admitted to the hospital and recieved the IVig treatment. Which she responded to very well she able to come home the next day. When we went for her weekly CBC count the next week she was doing amazingly well, she had gotten up to 127,000 in a week. When I took her back this past week she had dropped to 75,000 and had new bruising. I took her for another CBC and she had dropped another 4,000 over night. I dont know what to do the drs say they wont do anything until she gets to 20,000 or less but at the rate she is going she will be back in the hospital by this weekend. Is it normal for them to drop this much so soon and this fast? Any advice would be really welcome. I am scared and worried about my daughter. She is so active and it is hard to keep the helmet on her. Thank you for listening.

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Re: Really worried 9 years 1 week ago #3148

  • 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 is normal to drop quickly. IVIG is usually a temporary treatment and doesn't last too long. 4,000 in a day isn't a huge drop; the margin of error on platelet counts is 5,000, so it is not even really considered a drop. Platelet counts also fluctuate constantly, even in people without ITP. There may be many ups and downs.

Stay calm - you are aware of the situation and will be able to treat when necessary. She may not be hospitalized the next time...most treatment is managed out-patient.

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Re: Really worried 9 years 6 days ago #3150

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  • newcreationchangingdaily
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Hello Carissa. Glad your here! There are all kinds of nice people here. :) First, I'm not a parent of a child with ITP, I am an adult (45) with ITP. I do know what it's like to be worried about your child though. Long story short, 15 years ago my 6 month old daughter had to have a Cat Scan so I know how your feeling. btw, she's fine now! Sandi is right, most of the time the treatments are outpatient. What a shock for you though, having to have her admitted the first time! One thing you need to remember, the ITP itself isn't going to "hurt" Lily. The bruising may be hard to see all the time and you do have to watch that and keeping a watch on her for head injuries too. You'll get more used to it, if she has it for any length of time. Get yourself informed of what to expect and what to ask the docs. And...we're always here for you!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:Really worried 9 years 6 days ago #3161

  • JoyceRhodes69
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Hello,
I am new to this too and my daughter 12 months was diagnosed two weeks ago. She was at 5000 thousand and was not hospitalized. I take her to a specialist and they said many moms such as I panic at first until we become educated.We are trying a good diet for my daughter and only do blood counts once a month because it is too stressful on her.I love this site because I can relate to other parents and learn more thank you.Do not worry about your daughter her count is really good compared to other's.

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Re:Really worried 9 years 6 days ago #3164

  • CRiss05
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Thank you all for the help and support. I have to take my daughter in weekly according to the specialist. And now maybe twice this week because she was dropping kind of quickly. (53,000 in a week) We are taking her for a CBC tomorrow. She is starting to buise more and more each day. Thought she had a small nose bleed yesterday. Hopefully it wont be as low as I am feeling it might be when we get it checked. Any ideas on how to calm her down, because now everytime we tell her we are going bye bye she kicks and screams and crys. i think she is thinking that everytime we leave the house she is going to get pricked. Thank you all again I really appriciate the help :cheer:

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Re:Really worried 9 years 6 days ago #3165

  • JoyceRhodes69
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I would be worried too if I had to take my baby in twice a week. Even at 5K our specialist did not have her go through all that.Did the specialist say why twice a week? Ours said even once a month was too much. Does she have other medical problems too? I would kick and scream too if I had to go that much. I guess just reasuring her and make her feel safe.

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Re:Really worried 9 years 6 days ago #3166

  • JoyceRhodes69
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I forgot to ask where do you have to get a helmet for the babies? Libby's specialist never mentioned it.

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Re:Really worried 9 years 6 days ago #3169

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  • newcreationchangingdaily
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Carissa, I suggest taking her out once in awhile just for fun. Like for a small treat, or to the toy store and maybe a small stuffed animal that she can keep with her on the visits to the hospital. Just so that everytime you take her out it's not only to the doctor.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:Really worried 9 years 5 days ago #3177

  • CRiss05
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We got Lilys helmet from thudguard.com The are pretty cheap and they ship pretty quickly.

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Re:Really worried 9 years 5 days ago #3178

  • CRiss05
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She doesnt have any other medical problems. But when she got outta the hospital they said to have her checked every week for 6 weeks then we would go from there. But now that she is dropping again and bruising quickly we are taking her twice this week. because she is such an active toddler I think they want to keep closer tabs on it.

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Re:Really worried 9 years 5 days ago #3203

  • JoyceRhodes69
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I think going out for a treat and not just for the dr. visits is a great ideal too!
I am going to buy Libby a special stuffed animal maybe we will go to the build a bear workshop.I love this site and it makes me feel so much better.

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Re:Really worried 9 years 4 days ago #3279

  • JoyceRhodes69
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Libby is up in her counts and I am so excited! I really believe it is the change in her diet and we are not using any cleaning chemicals in the home. My husband took up all the carpet and had wood floors installed. We believe chemicals in the carpet steamer was not good for her either. I believe in trying to go all natural and introduce healthy foods to her has helped.I love all the advice and tips in here. Oh I just remebered we took her to make a bear and she loves it because the nurse acts like she is drawing blood from her bear first!

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Re:Really worried 8 years 11 months ago #3505

  • jpoisson13
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Carissa,
Glad to hear the counts are up.
Here's Cassie's story in a nutshell (should give you some hope!)
July 7th - diagnosed at 11k, recieved IVIG
July 8th - left hospital at 330k
July 18th, back in the hospital...10k More IVIG
July 19th left hospital

After that she stayed in the 60-70s (one drop to the 40s) from August - December 2008. She started going up on her own, and from January 2009-present she's had all counts 100k or above - except for one four days after her flu shot (90k).

Her last appt in march 2010 was 180k. She goes in June, and I think they'll release her from the practice and consider her "cured."
woohoo!
In fact, Cassie is currently playing ice hockey =) That's how good she's doing! She's 5 now (was 3.5 when it started) and doing fantastic.
=)
So even a few low counts in a row don't have to mean chronic ITP!
JulieP

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