My 7 year old daughter was diagnosed with ITP last week and stayed four days in hospital. Her platelets were as low as 2. She is never ill.

[beibhinn]

Her symtoms were a rash on her neck, body and legs, bruises in awkward places and chapped lips. While in hospital, she suffered from bleeding gums and nose bleeds. She had 2 lots of haemogloblin drips and her platelets went up to 40 or so. She's at home now but I keeping an eye on her symtoms. I am still unsure about ITP, I would be much appreciated if can you please send me booklets etc? Is it more serious as the child gets older? My daughter is embarressed to go swimming (part of school curriculum) as the bruises and rash will be seen.

[ITP_1992]

Sorry to hear about your daughter and I hope that you are both handling the news okay. I have been diagnosed with ITP at the age of 5, and I went to hospital with the same symptoms your daughter is having (they are the most common symptoms). I read that ITP in children isn't that bad and only some children would need treatment. I don't know if it gets worse as you get older but mine kept disappearing for about. 5 years and came back with different symptoms each time. I am now 25 and noticed that after I have had my son in the past 3 years, my condition has gotten worse and I was hospitalised 2 years ago and once in September 2012. ITP is different with every individual, some are quiet bad and have to have treatments everyday for a long time (chronic ITP) and for others it just comes and goes as it please. Tell your daughter not to be embarrassed about the bruises, they do fade away eventually once the platelets are a little higher. Wish you both all the best and if there is anything else you would like to know, we are here

ncbi.nlm.nih.gov/pubmedheal...

[beibhinn in reply to ITP_1992]

Hi Immy. Were diagnosed with acute ITP first then chronic or are you still acute? I think she was wearing eye shadow/make-up to hide the rash like on her eye lids. She has an appt on 06/03/13 so I will keep you informed. Thanks for replying.

[ITP_1992 in reply to beibhinn]

Still acute thank god. It must be hard for you both, I remember when I was in school my doctor advised that I do not do any sports because I might injure myself and I used to feel left out when all my friends played football or other activities but I knew that it was for my own good. I know it's hard because kids don't understand things like rare blood diseases or why she has bruises all over her but she just needs to stay strong and as long as she is supported by the grown ups then I'm sure she will be ok. When I had it as a kid I don't remember caring much, always wore dresses and the bruises didn't really bother me (used to get them mostly on my legs, as big as a 20p) but again all children are different. You both take care and good luck on the appointment

[sailor]

Hi Biebhinn. Sorry to read about your daughter. I am sure it is causing some concern to you both. I am sure if you go through some of the blogs on this site you will discover many with the same concerns. You will also find many who have this condition, some for years, and who will tell you it is worse for parents than the child. That is shared by several clinicians. However, some children diagnosed with ITP can suddenly find it goes as quickly as it comes, so lets hope that this applies to your daughter.

If not, do not be alarmed, there are many who have lived with ITP for many years and who lead a full and active life. Do however join the ITP Support Group who will send the pamphlets to you and you may be tempted to attend the next convention in the Midlands where you will be able to meet many specialists and talk to them over a coffee in a relaxed environment. There are several lectures as well being given by eminent clinicians from the UK and Canada. There is a link on the home page of this site.

Tell your daughter not to be embarresed by the bruising and rash. She should tell anyone who asks that she is a member of a group who are affected by a rare condition and encourage her to learn as much about ITP as she can as she will find other kids and parents will be amazed at her knowledge and understanding. Make sure her school is aware of her condition.

Remain positive, ensure you have a good specialist who knows about ITP and do not be afraid to ask as many questions of them as you feel necassary. Do not be fobded off if you do not understand the reply, ask again and again until you do understand.

Final question does it get worse as you get older. No one knows I think is the only answer. Some get better on their own i.e. my count has gone from 10 to 34 for no apparant reason after a count of 10 for more than 10 years. Why I do not know, I have not changed anything and I take no medication.

Hope this is helpful, keep us all upto date.

[beibhinn]

Thank you Sailor. It's frightening. I have notified her school alright. Her appt is on 06/03/13 so I will keep you informed. Ta again.

[magone7]

Hi everybody here. I am from Latvia and as far as I know here isn't any support group for ITP patients. I have lived with prednizoln for about 8 years because of this problem. It's nothing pleasant but no variants. I still work and enjoy life though not so active as i used before that. I guess there are many forms of ITP. I know only one person in my town who has ITP as well. He is 18 years old. And he does a lot of physical activities to keep him fit, play in the band. use fish oil. He doesn't have any bruises but I have a lot, on arms and legs. Dear beibhinn, I have heard that if it is not chronic form of ITP itcould be treated. Stay in prayings for your baby. Doctors don't know the reasons of this illness but GOD knows. Be blessed!

[beibhinn]

Thank you for replying Magone7. Just taking 1 day at a time.