MY DAUGHTER

[lrivera1]

hi my name is Lizette and I have a 4 year old daughter who was just diagnosed with itp her numbers have been going up and down fro 14- mid 20s. im just so heart broken at the moment.

[Toughytoughy]

Hi Lezette

Almost 70 % of pediatric patients never experience ITP again once out of first episode successfully. Now its just matter of time how long it takes with ur toddler in coming out of that. Hang on n stay strong. Have faith.Your daughter will be alright soon. God bless her !!

[Robert1959]

Most children get the 'acute' version of the illness which will hopefully resolve itself in 3-6 months which is different to the long term 'chronic' version that adults get. Did she have cold or the flu before the ITP started as this can often be a trigger? Don't get too distressed about your daughter and just watch over her until the illness goes away. Hopefully it will be a one-off occurrence for her.

[lrivera1 in reply to Robert1959]

She had a slight cold, nothing to be alarmed didn't even need medication. Hope it all goes away quick It's making me go crazy

[henryk4]

Hi Lizette.

I was diagnosed with ITP at 4 as well, i am now 26! My ITP went from acute to chronic and even now at 26 my levels rarely go about 30! I just wanted to let you know that as scary as it all is your daughter and your family can get throught this! I have lead a pretty normal life even though there have been hurdles it was nothing we couldnt cope with!! I hope this helps in some small way!

[TeresaPessegueiro in reply to henryk4]

Hi Henryk4!

I have a daughter that was diagnosed with itp at age 5, she is naw 12. Her count is almost always under 10. Did you try the splenectomy? I don't now if we should try?

We are from Portugal and because we are a small country doesn't have very much cases.

Can you help me with your experience?

[henryk4 in reply to TeresaPessegueiro]

Hi Teresa,

My childhood hematologist did not suggest the splenectomy because most children do grow out of it!

I didnt so when i was about 16 they wanted to do a splenectomy however i was not willing to go ahead with this!

I was told i would need to be on antibiotics for a period of 3 years and then possibly for life depending on my immunity if i had a splenectomy!

I was also told it is only a 60% chance it would work for me! Those odds were not something i wanted to gamble with as i was told i would grow out of it for majority of my childhood so i am not trusting this would work!

I am currently trying to fall pregnant and have been given many options that can ensure this is possible!

I have not been held back in life and will not allow ITP to consume my life!

I will hold out on having a splenectomy for as long as possible and i am glad i did not have the operation when i was 16!

I hope this helps! You need to do what works for your family and your daughter!

[S38abcd in reply to TeresaPessegueiro]

HELLO, removing spleen may work in some conditions but not always...my 5 year old girl has ITP from birth. I m scared for her.......How do girls cope with periods? have seen my female cousin having a hard time....WISH HEALTHY N SAFE LIFE TO UR GIRL...Im a worried mom too...

[TeresaPessegueiro]

I henryk4

Thank you very very much for your answer! And your count it was always above 10? Never tried any other therapy, rituximab, other imunosuppressive?

I hope that everything goes well with the pregnancy and that desire comes quickly.

[JJMcLaren]

When our babies are diagnosed with something like this it is heartbreaking. Im sorry that you all are going through this. Know that 90% of people only have acute ITP which means it clears up within the year, most of those will have 1 episode and not experience it again. My daughter was 3 when she was diagnosed and she is now 9. It still breaks my heart to see her in the hospital but she is such a strong girl and we just try and be positive. She is unique and special and getsee to play hookie from school. Lol. She has an antibody attacking her platelets so it will probably never go away but we did have 2 years where she only needed 1 treatment a year. I hope your daughter just has acute. Sending good thoughts your way.