4 year old with ITP

[kelb1975]

My daughter was diagnosed with ITP a week ago. In last couple of days she seems to be bruising again and has had a very small nosebleed. Is this quite normal?

[MOT2009]

Hi, Sorry to hear about your daughter. The answer is yes nose bleeds are very common in ITP, my son has been diagnosed now since April his platelet level was a 3 he has gone up and his been normal range but drops when he is unwell he has always got bruises all over his legs and I used to worry all the time, I've learned now how his body works and what to look out for with children its a high percentage that they will have it acute which is only short term. Take care X

[sailor]

Hi. Sorry to hear your daughter has been diagnosed with ITP and has the dreaded bruises and nose bleeds. I think MOTO2009 has answered your question well. We all suffer in different ways. Some bleed and bruise and others do not suffer as badly. Your daughter being young, I would hope will recover as many do at an early age and it will not come back. Work with your consultant and do not be afraid to ask questions and obtain answers you can understand. Remember you are not alone but do make sure all your friends are aware of the condition and there are always plenty of people on this site who will help. Do also join the suport group as there is enormous help and information available through them. Keep us posted and we will all be thinking of you and your daughter

[kelb1975]

Hi Sailor and MOT2009

Firstly thank you for your messages. You have confirmed what I was thinking. We are still waiting to see the consultant so I will bombared him with questions.

One thing I wondered, since this has all started Summer is fine most of the time but seems to have mood swings where one minute shes playing happily and the next minute shes screaming at me.

I mentioned this to the doctor and he said it wasnt a symptom but Ive seen websites that say it is a symptom. Can you shed any light on this as I don't want to let her get away with too many temper tantrums if she is just being naughty?

Thanks again for your responses

x

[MaineMom3]

Hi,

My 4 year old son has had ITP since May 2011. He began as an acute case, which lasted about 6 months, and then had a recurrence in April 2012. His counts go up and down, but generally in the "up" direction - two steps forward, one step back, so to speak. In our experience, we have learned to "read" his body to predict his platelet count (almost always confirming with blood work). Bruising and nosebleeds are definitely a key sign, as is the petechiae spots and then how long the bruises actually last (with low counts it takes a couple of weeks for a bruise to go away for my son). Then, to answer your question about the mood swings, I find that when my son's counts are down (under 50k), he seems more tired. More tired in our case always means moodiness (especially at age 4!!). However, our doctor said the same thing - that it wasn't a symptom she normally associated with ITP. While I absolutely trust our doctor, I do feel that a mom's instinct is not to be ignored! So, for us, our solution is that when counts are down, we go back to nap time in the afternoon and an earlier bedtime. This seems to help in our situation!

Good luck!!

[kelb1975 in reply to MaineMom3]

thank you. Hard isn't it. I guess we just have to be thankful it isn't anything worse x

[sailor]

Hi Kelb1975. Thanks for the reply. Fatigue has been proved to be due to ITP and is now accepted by consultants internationally, if they know about ITP and that is the crux of the matter. Not all consultants are specialists in ITP however good they may be. My consultant admits it is not his speciality and if he has a real problem case, he calls one of the recognised specialists in the condition for advice and guidance.

MaineMom3 has given you the best advice. Try it and see, it certainly is not going to hurt.

Finally I admire your positive attitude. I am sure it is hard for a Mum but keep it up. That is the most important thing a parent, relative or friend can do to help but be ever mindful of the problems. Professor Jim George from Oklahoma, who speaks regularly at th ITP conventions in the UK, has always said, this condition is harder on the parents and causes them to worry far more than the kids do!!!

Finally, September is ITP awarenes month in the UK and also I think in the USA. If you can or would like to help, contact the ITP support group.

Hope this is helpful.

[kelb1975 in reply to sailor]

Thank you.