3 yr old son newly diagnosed ITP

[Beffalump5]

My youngest son Finley, born Jan 2009 was diagnosed ITP 3rd Oct 2012. Any advice or guidance is appreciated.

[Lynnek]

Hi Beffalump5 - Sorry to hear your little one has ITP.

Many children, particularly younger ones, suddenly improve within six weeks, whether or not treatment has been given. Three out of four children will have improved by 6 months after the start of ITP (source ITP Support Association) check out the website.

ITP in children usually sorts itself out on its own. Make sure your GP is aware of your concerns and request to see an ITP specialist (if your GP hasn't already advised you) if you are unsure of anything your GP or specialist has told you ask, then ask again until you are satisfied you understand.

My friends little girl (3yrs) was diagnosed late last year with a platelet count of around 10, she now has a count of 300ish with no medical intervention (other than regular blood tests & check-ups). The only thing different in her life was she couldn't do all the "normal" things a 3yr old wanted to do in case of a bleed (that was mostly due to the parents protection than the illness).

There are many, many people on here who are willing to give advice You proberbly will get replies from Anthony, Sailor & NickyD as they are regulars on here with good advice. Childhood ITP is different to adult ITP (I have adult ITP) and although the symptoms can be the same it can go as quickly as it came.

All the best, please don't worry too much and when in doubt - ASK

Lynnek xx

[lotte2121]

hi there, my son is 2 on sunday and was diagnosed with itp in the begining of august. it was very hard to begin with trying to keep him safe and to not worry, i took away any thing in the house play wise he was likely to climb on and re baby proofed the house, we also limited access for a while with his cousins whos faourite games together were wrestling. it did feel like his count would never get high, it started at 10, then he had weekly tests which came back as 20, 13, 11 and then the last results we have had were 64, which totaly shocked me. we have resumed normal life but he will be on fortnightly blood tests for a while, although i know his counts not dropped too low as he has only normal little boy bruises and after a cut to his gum hes barely bled. although the weekly blood tests have effected my little man, he is very nervous around strangers and gets very upset going to unknown places, we have spoke to his health visitor who refered us to a play therapist to work through his anxieties, im not sure if its just cos he is an extra sensitive little man but just to know there is help if he is perticularly effected with the tests. since the start i have been told how little ones nearly always recover from this, and its just a matter of keeping them safe in the meantime, i didnt believe it as it seemed like forever he was very low but everyone was right, but as a mum is impossible not to worry too much. if he is in a nursery i found some leaflets online you can print out to give them advice on how to help him stay safe, and some for family members and things if they are struggling like mine to understand. hope your little one has a speedy recovery xxx lotte

[NickyD]

I have adult ITP and it is very different from childhood ITP. Most children grow out of it but that does not mean your son will. Take the precautions that you need to. When my count was zero my consultant said "no kick boxing then!" You dont say what his count is, what treatment he is getting or how often you are going for blood tests. Many people can live perfectly normal lives with low counts.

[MaineMom3]

Hello - My four year old was diagnosed with ITP when he was 3. It came on out of the blue. We discovered it because he developed a petechiae rash all over his body. His counts were 8 at that time. He was admitted to the hospital for three days and given an IVig treatment to boost his counts, as he was showing significant signs of bleeding. His counts went up and down for about six months, leveled out at 290 for six months and then we started all over again, but without the treatment. Now that we are 18 months into his diagnosis, we have learned to "read" his body. We have now come to know what kinds of bruising indicates what count he is at. We work with a blood specialist here in the US and use our own judgment as to when to take him for labs. When his counts are under 10 we see a petechiae rash and massive bruising, and we treat. If they range between 10 and 30 we see significant bruising on his torso and limbs, and we generally have a "feet on the ground" rule (no biking, climbing, etc.). If he's 30 to 75 his bruising is less, and there are no "high risk" activities. And, anything over 75 we consider pretty safe and the bruising tends to be more in line for that of a normal 4 year old. As he gets older, I probably still wouldn't let him play contact sports until he's well into the 150+ range, but doctors have a lower threshold, I believe. I think parents are a bit more protective!! Saying this, so far ITP has had minimal impact on our lives or our son aside from pesky lab work every week/month. And, from everything I understand, statistically children are almost always have acute cases and they go away on their own within six months. We have been told our situation is unusual in that he's had a recurrence with 12 months of the initial onset, but that it's still very likely this will be the only one he has. There is a great site - pdsa.org - that offers a lot of resources and information. Good luck! I hope that this is a very quick recovery for you and your little guy.

[Beffalump5]

Very overwhelmed by everything on Wednesday... After being told by the hospital they were testing Finley's blood to rule out leukaemia (which was thankfully clear), we then found his platelet levels were 3 & learned the cause was ITP... It's a heck of a lot to take in... I'm an emotional wreck who only half heard what the doctor had told me about the condition & the weeks/months to come... The hardest thing so far is stopping Fin from playing with his siblings, our puppy & him not being able to attend nursery... I feel like he's being punished without being naughty... Myself, hubby & kids are taking it day by day... Tomorrow we plan to buy Fin a rugby scull cap to protect his head... Next blood tests are Thurs so fingers crossed... Thanks for all your advice & kind words <3

[catherineb]

hi Beffalumps5, its a bit of a shock when you introduced to ITP in children. OUr little boy was diagnosed in april 2010 aged 3 yrs ans 4 months, unfortunately he has never growen out of it , in spite of all the treatments which he had been given!!! in saying this please do not be alarmed, i know of two kids in my local area that have been diagnosed and recovered in a matter of weeks!!!!

Our little boys platelet count on diagnoses was 3 and over 2 years later they remain at 3.

our wee man never sits down and initially he was in the hospital weekly with bumps to this head, we learned not to jump to every bump but at the start it was difficult to know what to do to be doing the right thing.

He is now in primary 2 at school, has a full time classroom assistant for his safety and wears a specially made helmet during any outside play and activity. he loves it and the school are very very supportive in deed. the kids just acept him as one of the group. In fact they prob all look out for him!!! plese dont panic, its is difficult but as we deak with it it gets more managable,,good luck and i will help you anywhere i can!!! x