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TOPIC: 16month daugther diagnosed with ITP 2wks ago,

16month daugther diagnosed with ITP 2wks ago, 9 years 8 months ago #10645

  • menminime
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I have a 16 month old daughter. She was diagnosed with ITP on December 6, 2010. Less than a week before thanksgving my baby had the normal 15 month old vacines and yes i thought i would give her the flu shot for the first time as she is asthma prone. Three days later she started throwing up with no other symptoms. Once again I figured normal vacine side effects. On or around thanksgiving (this year), we started to notice alot of bruises on her legs, we figured that it was a side effect to her 15month shots she had a couple of days ago, or she is a toddler she trips and falls alot. But i googled it and all the sites I saw said that it was normal wear and tear on a toddler as they were all on her shins. So we waited to see if it cleared up. Instead of seeing it clear up we saw that they were multiplying and that they were infact lumpy looking. But my idication was when I started to see it on the tops of her feey. So i made an appointment with her pediatrcian and they ran a strep test, cbc and a mono test. they came back and told me that her strep was negative and that there was a no to the mono as well, but that there was in fact a problem, her platelets count was low, it was at a 6, so they wanted to rerun it. They reran it and it was then at a 9. So she instructed us to go to the emergancy room and that she would call and tell them that we were on our way. Once we were there they reran the tests and it was at a 14, so they admited her. they gave her the IVIG treatment, by the next morning her numbers went up to 38, so they let us go home. Later that night about 9 hours later she started to vomit and had a fever of 101 so we took her to the hospital at 2am on the 8 of december. They redid her cbc and a urine test, her urine test was fine and they said that her platelets had gone up to 148 now. So they said that she was fine now. I was really releaved I figured that this medicine did wonders and that maybe thar she was at the end of it, as i didn't know two much of what ITP was. the hospital sent us home around 6 in the morning. Then the "flu like symptoms" went away less than 12 hrs later.She started at 9pm and by 6 am the "flu like symptoms" How could that be a flu. At 10 am on the 8th her docotrs called and said that she did in fact have strep and that she needed to be on amox. So they gave us the prescription. About three-four days ago she started with alot of Diareha more soupy and griffty looking but green so I was not alarmed, I figured that it was just her anboctics. The pharmacy messed up her prescription and gave her the wrong dose, but I caught it soon. On friday we had a follow up appointment to just make sure they were still ok. Well they are not okay it was at a 9 and then when redid it was a 15, so once again they directed us to the emergancy room. While there they themselves redid the test. the first test they did, they said that her blood clotted so they could get what they needed (i thought if you had this your blood doesn't clot) well they redrew the test and then it said that she was at 28. they discharged us and told us to follow up with our doctor tomorrow, and then 3 hours after we got home the doctor called back from the er telling us to just come there because our doctors office didnt feel comfortable doing it there. So now we went back the next day on the Sarurday at 12pm, and while in there they want us to follow up with a pediatric hematologist-oncologist next week. Well while there her platelets dropped even more well down 6 points to now a 22. So once again they admitted her and gave her another IVIG treatment. Then the next morning they redid her blood test and her numbers went up to a 61. i was so releaved. So we will get to go home. Finally again. Well this was on this sunday that she went home. A day later she started with a fever of 101 for no reason and when I gave her tylenol the fever only droped like .4. THen today on and off she has had a low grade one for now apart reason. Today a little mnore sleepy. Questions I have are:
- How can her numbers get her to the point that she is better then just drop so low again, with all her symptoms back in under two weeks?
- shouldn't they have kept her overnight to make sure they don't lower anymore?
- Any advice you could give me, I am just concerned and do not know what to do.
- my mothers sister had ITP, my father has cirosis of the liver ( i know I spelled it wrong sorry) Culd any of this be from my gene pool? I have a terrible immune system, and I am sick at least 1 or more times a month. I had mono or so they thought 4 times in my life. I am feeling like I did this to her


Thanks to you all for listening to this woried mother of three.

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Re:16month daugther diagnosed with ITP 2wks ago, 9 years 8 months ago #10649

  • sally
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How incredibly stressful for you. I'm new to this and don't have children but I just wanted you to know that there are people listening and feeling for you. I have read some stories here with similarities to yours. ITP can be treated and I understand usually very successful with children. The sooner you see a haematologist the better. Some treatments aren't very successful and have bad reactions with some individuals but there are other options that work a treat - it's finding the one that works for your little girl. Hang in there.
I hope you and your family have lots of hugs and a few laughs over this difficult period. Things will get better.
Best wishes, Sally

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Re:16month daugther diagnosed with ITP 2wks ago, 9 years 8 months ago #10656

  • 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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IVIG is a pretty temporary treatment, so dropping quickly after having a treatment is common. There are other treatments that can last longer, and hopefully her doctor will suggest those soon.

Children with low counts are not always hospitalized, so allowing her to go home was okay. Most doctors will look at symptoms and if a child is not bleeding, they will not hospitalize the child.

ITP itself is usually not hereditary, but the propensity toward autoimmune disorders is. My sister and I have both had ITP. There are a few hereditary types of ITP, but there are generally other symptoms associated with those.

www.pdsa.org/about-itp/and-families.html

www.pdsa.org/resources/other-platelet-disorders.html?layout=item

Most of the time, ITP in children is acute, meaning that it will go away within a few weeks or months. ITP is also common after certain vaccinations such as the MMR.

You did not do this to her. Please don't take that guilt. It just happened, okay? She'll be alright.

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Re:16month daugther diagnosed with ITP 2wks ago, 9 years 8 months ago #10674

  • Angel85
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I feel for u and your little girl, sounds like u have really been put through the wringer in the last few weeks. I just want to let u know like Sandi has mentioned that you did not do this to her, so please dont feel guilty at all. I know that's the natural reaction all mothers would have in a situation like this, but it will only stress u out more to think like that, so please don't cause u didnt do anything. It is hard to see your children sick and knowing u can't do much to make them better. I am 25 and have recently had my appendix removed and then had a wound infection and it was really difficult for my mum to see me in that much pain and feeing really unwell and it was hard for me to see her feeling like that.

I just want you to know that anytime u need to vent, you can always come here cause we all know what your going through, I am just seeing it through my eyes though as I don't have any children, I am the one with low platelets, but I see what my parents have to deal with and can understand through them what your feeling and we're here for u and your family.

Take some time out for yourself and let your emotions out even if it is to cry or scream or vent on this forum. Remember you don't have to deal with this alone and don't hesitate to ask about anything, we're here to offer any advice we can and support u through this difficult time.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:16month daugther diagnosed with ITP 2wks ago, 9 years 8 months ago #10677

  • menminime
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Thank you for all your kind words. Today I will see the Ped Hematology-Oncology doctor. My husband is not happy that I wanted to go see one so soon. He seems to be more upset that i missing work from a season job than her being sick. I tend to keep everything bottled up inside as he can not be a strong shoulder to lean on. Oncew again thanks. And thank you for the other website with the the other blood disorders.

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Re:16month daugther diagnosed with ITP 2wks ago, 9 years 8 months ago #10685

  • jaycharness
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I know that everyone is different in how they handle things. Be sure to cut you guys some slack. This is a very stressful and difficult time to go through. No one wants to see their child hurt, but when you are dealing with something like this, there is a lot unknown. It can cause a lot of stress between spouses and just on the family in general. It is that peer support that makes this group so valuable. All kids are different and will have different reactions from treatments so getting "medical" advice on this board is a little iffy. But, we are all in the same fraternity and getting that peer support is invaluable. After going through what we have and talking to so many families on the hematology/oncology floor who were misdiagnosed, I applaud you following your instincts and making sure you are getting the best care.

Stay well,

JJ

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