hi all, my son has a hyperactive disorder and has now just been diagnosed with ITP! My doctor has advised me to keep bruising to a minimum however with my son being too young to understand and bouncing around all day long, after only 3 days of a diagnosis he is completely covered in bruising. If i attempt to stop my son from doing things like, playing on his bike (he regulaly goes so fast he falls off and cuts/bruises his body), he throws a tantrum and hits himself, which causes bruising! i cant win!
i understand what itp is and how my son has developed itp and why he is prone to more bruising etc, but why is it important to keep bruising to a minimum? and will it slow the regenerating process of the platelets if my son carries on bruising like he is? i understand that violent blows can cause serious internal bruising but is the minor bumps and scrapes damaging his recovery rate? and has anyone got any suggestions on how i can try to explain this to my 3 year old? he struggles to calm down and sitting still is a real problem for him.
my sons platelet count was 20,000
im in the UK, but have joined this site as i have failed to find a forum on a uk based website.
the attached photo was day 1 of diagnosis, his legs now have double the amount of bruises and the same goes for his back and arms.
No, bruising doesn't make recovery take longer--but may really increase the stares and questions you get from others! Another recent post from the mom of a 21-year old mentions that her daughter was adked if she was being abused! Some parents carry a letter from the doc stating their child has ITP and discusses the bruising/bleeding symptoms--all to stave off child protective services.
Long, thick sweatpants may protect your son's legs from the battering he gives them. I hope you've always required a helmet to ride, cause that one is important! And since Halloween is almost here, you might try to find a superhero costume that has padded fake muscles--cause that would protect his torso--though you may never get it off him! Alternatively, I'll bet you can find some giant foam puzzle mats meant for the floor--each piece is about a foot square, and they can be affixed nearly anywhere with glue or velcro. Put those on the mailbox post, corners of walls, etc. And the foam 'noodles' they use in the pool can be slit lengthwise to cover table edges, swingset chains, or other long skinny surfaces. I'm sure others have plenty of ideas, too!
Bruising comes in at least two forms--those you can account for, and those that you can't. Bruises that are dark and in areas of the body not usually involved in accidents--the back of his knee, the inside upper arm--can indicate a drop in platelet numbers. I realize that treatment in the UK is infrequent compared to the US, but didn't the docs think his ADHD might be an additional risk factor? Does pain register with him, or does he seem oblivious to it? Does he usually report when he feels unwell?
Hope this helps, and that this will be a short-term thing for your little one!
Ann, Caitlin's (23) Mom
Hi there, my youngest is three next month - dx with IPT in April (nose bleeds, major bruising, petechiae and a count of 2) and in July was dx with autism. Lots of fun. Yes, I understand your predicament all too well. He's the youngest of five children, four boys (2,4,11,14), one girl (8), all very energetic and love to climb high, run fast, wrestle etc and have no fear. He's already had four hospital admissions for infusions - these being the hardest for him because he simply DOESN'T understand in any form. He has to be sedated before they can put the needle in for the iv. He was so upset while still sedated that he broke out in petechase while they were putting the iv in. Had twice as many dots on him afterwards. I simply can't explain in even the simplest terms what he's not allowed to do so the only thing I can do is not leave him alone - ever. He just gets no, Ethan...means things don't get done around the house because he wants to play outside for two hours. So there I am. He could climb up onto the tv cabinet, chair, slip on anything, the kids beds etc - it's too dangerous at that young age with a low count. I get looks like, have you abuse your child or what?! because of the bruising. Taking a letter around with you is actually a good idea - hadn't thought of that wildrose.
How much does your son understand? Does he respond to 'no'? He may still do what he knows he's not allowed to do, but does he KNOW he'll get a response from you? Ethan will look around at you and wait for the 'no' but it doesn't stop him - kinda like a game. It's difficult, I know, but all you can really do it try your best. Saftey proof the house as much as you can. My boy has the little brusies like your son and has also had ones the size of a fist. Thing is the longer he's had ITP, the less symptoms he's got when his count is dropping. He looks fine apart from a few brusies, smaller ones, no petechiae that you can really see and it's at 5. Can't tell anymore by his symptoms. I've seen them come up when I KNOW he hasn't hit himself in any fashion - say when he'd had a quiet day. I agree with wildrose about the brusies. We're in Australia where I feel the treatment has been excellent. I understand that it's more difficult in the UK? Perhaps you can tighten the pedals of his bike or some parts of his bike somehow so that it rubs together more and is slower? Sounds dumb, but you know what I mean. More friction could it go slower. Definately, a helmet
wild rose that is a great idea. I may not have a 3 year old but I do have a very hyper active 16 month old girl that thinks she is superman. how do you tell a toddler that can barely talk to sit still and calm down. I recenlty moved to a new state and was just trying to get back into the work force but now that she just recently got diagnosed with this I am struggleing with trusting her with anyone, let alone a stranger to watch her. Does anyone that has the bruises feel lumpy because her bruises on her legs and feet are very lumpy.
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