12 yr old with itp

[Roni09]

My daughter was dx with itp about a yr ago she has never really shown any signs such as brushing. Her platelet count had never dropped lower than 90 until last week when they were 65, even though her hematologist says its nothing to worry about ( its a watch and wait game he said) as parent I still worry. I'm not sure what to expect if they happen to drop lower. I've tried to restrain myself from reading every on the Internet because some site give totally different info. As a parent I think I would rather hear advice from other parents dealing with the same issues and if there is anything I should be doing as far adding anything to her daily diet or if there are things she should stay away from.

[NickyD]

Hi Roni09

There is nothing you can add to her diet. Your consultant is correct that you need to wait and see. If she has no bruising then she has nothing to worry about. Many people survive quite happily on counts less than 10. Try not to work to the platelet count, work to the symptoms. My lowest count was zero and I still functioned very well. I had to be careful not to bump myself and my consultant said "No kick boxing for you just now". I did have medication to bring the count up but it stayed in single figures for over a week before it crept up enough for me to go home. It is a roller coaster of emotion. Most young children will spontaneously recover from ITP. Fingers crossed that your daughter is one of them. NickyD

[Sophie2013]

Hi i understand how this feels my son is 1 and was diagnosed 5 weeks ago and his were at 10 and went for bloods last week and they were 13 so there going up but were a waiting game

[PranavJoshi in reply to Sophie2013]

Hi Sophie2013, I am in same boat as you. My 1yr old son also has ITP..his counts were 23 at presentation, 31 two days after and 76 one week after. We are awaiting his bi-weekly test results but he has been showing some bruises and petechiae, so am keeping fingers crossed.

Is your son on any medication? We refused to give steroids to such a little child and prefer to wait and watch...

Good luck and God bless

[lindylou45]

Hi I quite understand how you feel, even though my daughter is 23 I still worry about her count, at the moment she is on a count of 67 which is an exceptional count for her. When she was diagnosed last April she had a count of 3 and for the next 8 months her count never went in to double figures, she has managed to live a fairly normal life although she did try and make sure not to take any knocks or bumps when her count was as low, (although when she got to 0 she took a small bump in which she suffered an intercranial bleed) Thankfully she came through it with the help of an excellent consultant and team of doctors behind her. The count your daughter has although low is still a good count and I think your haematologist is right that it is a watch and watch game. Good luck and best wishes to you and your daughter.

[MOT2009]

Hi, I know how you feel, my son was diagnosed with ITP last year with platelet count of 3... He soon inproved and was always above 100 except once he had a nasty cold and dropped to 64.. I read up on ITP which honestly I found it helped it gave me a better understanding on the whole. I think as the parent of a child with ITP its much more intense, the children don't understand and are generally ok within themselves! I used to panic all the time if he fell banged his head, I become at one point a bit obsessive and was completey examing his body just to put my mind at rest, it eventually made me ill. My son was 18 months when he was diagnosed and he was and still at that age where he is climbing falling and forever bumping into things. I'm at that stage where I'm confident that I would be able to see signs staright aware I know how his body works, if he is ill, run down etc I make him take it easy! With plateletes they are never consistant they change every day maybe every hour, I personally think everyone has had mild ITP at sometime in there lives its only when they drop so low signs are more visable, I still have my days where it really gets me down and just want to wrap him in cotton wool.... But I have to let him be a boy and enjoy. People with ITP generally lead a normal happy life. Your daughter will be just fine, I hope I've helped xxx

[cksk356]

My daughter was diagnosed at the age of 13 but her counts were so low she had to start treatment. Really with counts at 65 it is still a watch and wait game treatment wouldn't be administered until 20 or lower. My daughter for the past year has been on an organic diet or as close as we could get it. We also stay away from garlic, onion, vinegar any natural ingredients that are known to lower platelet counts. The hematologist we take her to at Children's believe in it and the proof for us has been steady platelets. Hope this helps and good luck. By the way certain allergy and cold medicine can make platelets drop quickly so look closely to active ingredients.

[A_mom in reply to cksk356]

Hello, this is something new for me: garlic, onion, vinegar impacts platelets count? What else?

I know about aspirin, advil but I did not find any info about food. My son is 13 and he was diasnosed with chronic mild ITP.