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TOPIC: Worried mom

Worried mom 3 years 10 months ago #56863

  • Acusimano
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My daughter was diagnosed a year and a half ago at three years old. Her platelet count has been as low as five. We are going tomorrow for a one-year follow-up as she has been diagnosed with chronic ITP. My Constant worry is that her chronic ITP will turn into something else, something much worse. Although people reassure me that ITP does not turn into something worse I cannot tell myself that. I am hopeful that we will get good news at the appointment tomorrow but I am fearful that we will get worse news then just ITP. She has no symptoms other than bruising. I know I am being neurotic but could use some words of encouragement from parents who have been there!

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Worried mom 3 years 10 months ago #56869

  • mmcnatt
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Hugs. Been there and sometimes still have the worry about something worse. My daughter was diagnosed in 1st grade (however I suspect she had it in toddler hood with her crazy nosebleeds. I went to nursing school just so I could understand better. Good news, according to my textbooks there is not a high incidence of ITP turning into something.

My child is now in the 5th grade. When she was diagnosed her platelets were stable in the 90s. I got in nursing school and she was no longer stable. Hers hasn't dropped lower then 10k.We have done IVIG, an Immune suppressant, and now Promacta.
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Worried mom 3 years 10 months ago #56872

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Thank you! I think the fact that her hematologist is located at our local cancer institute is much of the reason for my worry. Just physically going there is difficult for me. Even though our doctor has reassured me that ITP is a platelet disorder, it is difficult waiting in the same waiting room as children with much worse going on.

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Worried mom 3 years 10 months ago #56873

  • 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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ITP never 'turns' into something else. ITP can be a symptom of other illnesses, but you would probably know by now....other abnormal labs and symptoms.
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Worried mom 3 years 10 months ago #56875

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Our hematologists are also oncologists too. So totally understand that worry. Esp when she had to check into the Hope Center at Children's. They provide chemo to the kids. We never actually made it in there. We always were sent upstairs for IVig.
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Worried mom 3 years 10 months ago #56880

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Thank you!

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Worried mom 3 years 10 months ago #56895

  • momto3boys
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It's tough when you have a child with a medical condition. I wouldn't worry about the ITP turning into something worse unless there is some other labwork which indicates that more is going on. I'm now in my 40s and I've been dealing with ITP since I was around 8 years old. It never turned into anything else :)

My mother would always say that she got perspective when she looked around at all of the kids around me receiving cancer treatments while I was managing my ITP. It really seemed a lot better when she looked at it in that light.

So many kids who have ITP when younger achieve remission, so there is a lot of hope for you. I, with my lifelong ITP, am more of an exception than the rule from what I understand. Frankly, I've led a normal life and ITP ends up being more of a nuisance than a condition requiring constant management. Hang in there and try not to imagine worse things happening :)
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Worried mom 3 years 10 months ago #56903

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You are so right about this! As we were sitting in the waiting room today at the Cancer Institute, there were three children receiving chemo. As I looked around at the other mothers, I knew that any of them would trade what they have for what I have. I left the appointment today with a great deal of perspective.

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Worried mom 3 years 6 months ago #58419

  • Mommymann1
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  • My name is Shawna. my husband and I are parents of a beautiful little girl named Analee. Analee was diagnosed with ITP last year, she was only 1 at the time. It was one of the most frightening moments of my life. Shes doing fine.
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Hugs from one mommy to another. My daughter was also diagnosed with ITP at the age of one. I was so frightened. It started out with her bruising super easy and at first I chopped it up to she is the only girl in a house with 2 older brothers, she is forever trying to do what ever they do and she is so clumbsy. But then one night her and her brother were chasing each other around the room and ran into each other her eye got so bruised by morning her eye was jet black and swollen shut. I took her to her pediatrician where they all but flat out accused me of hitting my own baby I started balling telling them I would never lay a hand on my child and that something was wrong with her and they needed to figure it out and I wasn't leaving until they do. I requested they do any test nessaccary. They ended up drawing her blood 3 times to do the same test praying for different results. Her doctor came in and apologized for his accusations against me and told me I was right something was wrong with her and they were sending the ambulance to pick us up and rush us hot to the ER. That her platelets were extremely low. We were rushed to our local hospital where we were told they couldn't take her they couldnt help and it was best to transfer her again to the teaching hospital an hr away. So we were rushed hot again. I called my husband in the ambulance and told him I had no clue what was going on but we were being transferred and no one would tell me the extent of how low her platelets where until we reached the final hospital which my husband met me at. They ran more test and finally gave us her diagnoses. Her platelets were at 3 and she has ITP. She was then admitted and had to get a 12 hour treatment which she had a horrible reaction to so the had to lower the drip and extend the treatment to 24 hours and put her on steroids. My heart broke for her. My faith support from my husband and my love for my sweet baby girl is what kept me from completely falling apart. She was going every 2 to 3 weeks to get test done he platelets have never gotten back to normal but have stabilized and been constant the last 3 times her blood work was drawn. They where at 77 last time she had gone in. But I am fearful everyday that they will drop again or I will find out they missed something or it's gotten worse or she has something more than ITP. Her doctor told me the next time they drop to about 10 they are thinking about a bone marrow biopsy. Which scares the living crap out of me.

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Worried mom 3 years 6 months ago #58426

  • Sandi
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Shawna:
I know you're really scared, but most children with ITP do fine. Doctors who are experienced with ITP do not panic and they stay calm when low counts occur. Read the posts here and you will see the experiences of others. It might help. Most of the time, the bone marrow biopsies turn out just fine and are done as a precaution to make sure there is nothing else going on. The fact that your daughter responds to treatment is a very good sign.

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