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Cn ITP cause brain bleeding?

  • norelahabdulrahman
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13 years 8 months ago #22052 by norelahabdulrahman
Cn ITP cause brain bleeding? was created by norelahabdulrahman
:( I was sad because my 6 years old son passed away after 10 days diagnosed with ITP. He had brain bleeding after 2 times treatment with IvIg.the he was in coma for 2 days before he passed away. Why????????
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13 years 8 months ago #22055 by juliannesmom
Replied by juliannesmom on topic Re: Cn ITP cause brain bleeding?
I am very sorry for your loss. There is a small, but significant, risk of brain bleeding in ITP. The child who matters most is one's own child, and so it is a very scary threat, and is the very thing most parents fear worst when their child is diagnosed.
Norma
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13 years 8 months ago #22058 by lili
Replied by lili on topic Re: Cn ITP cause brain bleeding?
I am so sorry to hear this. This is everyone's worst nightmare. You and your family will be in my thoughts.

Lily
The following user(s) said Thank You: norelahabdulrahman
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13 years 8 months ago #22059 by Kaylas mom
Replied by Kaylas mom on topic Re: Cn ITP cause brain bleeding?
Words cannot express how sorry I am for you! This is our greatest worry as parents of a child with ITP. My heart goes out to you and your family.
Krissy
Mom to Kayla 10 dx 2/2009 with a count of 1,000
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13 years 8 months ago #22100 by norelahabdulrahman
Replied by norelahabdulrahman on topic Re: Cn ITP cause brain bleeding?
I just got new information(may be for me),that there is another disease like ITP called TTP.but I've not get many information about TTP.how can I recognise the symptoms are ITP or TTP.because some of my relative said may be my son had TTP not ITP and may be the dr gave him wrong diagnosis.
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13 years 8 months ago #22126 by lucidawn
Replied by lucidawn on topic Re: Cn ITP cause brain bleeding?
TTP is Thrombotic Thrombocytopenic Purpura is sort of the opposite of ITP. It causes many tiny clots to form in the small vessels, and this can cause damage to organs in the body. But it does not cause bleeding in the brain. I'm very sorry for your horrible loss. ITP is said to have a small risk of ICB, but honestly I think that this is understated. I would like to see the statistics of the occurrence of ICB in ITP patients. However small the risk is, though, if it hits your child, its the most significant and important statistic. I'm so sorry for your loss.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
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13 years 8 months ago #22127 by Ann
Replied by Ann on topic Re: Cn ITP cause brain bleeding?
I too am sorry for you devastating loss.

The stats here are said to be between 0.19% to 0.78%.

bloodjournal.hematologylibrary.org/content/114/23/4777.long
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13 years 8 months ago #22135 by lucidawn
Replied by lucidawn on topic Re: Cn ITP cause brain bleeding?
Thanks for the stats. Its said to be estimated, so to me that means they don't really have an accurate picture of icb's in itp patients. I feel that some doctors under state the risk, which is dangerous.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
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13 years 8 months ago - 13 years 8 months ago #22137 by Ann
Replied by Ann on topic Re: Cn ITP cause brain bleeding?
A study in the UK found the incidence of ICH to be 0.1% which is pretty similar to the US study. adc.bmj.com/content/71/3/251

I think it's accurate and parents should not worry unduly. Of course when it's your child the statistics don't matter but it is interesting that the incidence is the same in the UK where we don't generally treat children as it is in other parts of the world where they do. I think that should give parents comfort that whatever they choose to do will be the right thing for their child and not put them in any more danger.
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13 years 8 months ago - 13 years 8 months ago #22142 by juliannesmom
Replied by juliannesmom on topic Re: Cn ITP cause brain bleeding?
Regardless of the statistics, ITP can cause brain bleeding. When it's your child, it's 100%. I've only known one prior parent on this site who lost a child, but this is two too many. I think I've only known one adult on here who had a brain bleed, but it was disabling. This risk is, after all, the reason we even ask each other whether snow skiing, flying, bouncy houses, and the like, are "safe" at various counts. We all talk about not getting hung up on numbers and the thought of a "cure," but this is what we worry about, and this is when I wish there was a cure.
Norma
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13 years 8 months ago #22148 by Ann
Replied by Ann on topic Re: Cn ITP cause brain bleeding?
Well personally I find the statistics a comfort. My doctor had a patient in his 20s die of a brain bleed not so long ago so to know that ICH is not very common in adults as well as children helps me to relax and not be a basket case.

I do think it's important that everyone, parent and adult patient knows the odds so that they can make their own mind up how to cope. Without the numbers none of us would manage. And it's even more important when someone makes such a sad post that can make the rest of us falter.
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13 years 7 months ago #22182 by Dean
Replied by Dean on topic Re: Cn ITP cause brain bleeding?
I am so sorry to hear of your loss!!!! Prayers for you and your Family!!!
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