Time to ditch the helmet??!!

We make our little man wear a helmet when playing, Tell a 2 yr old feet on ground at all times..haha!!
Recently he has been fighting to put it on, maybe started 2 weeks before count of 19 (count11) I do feel a whole lot better if he has it on, but he hates it!! The poor little guy has bald spots, head sweats, even tiny scabs from wearing it. Compared to the ITP symptoms I have no right to complain but he just hates it and after all I am not the one stuck wearing it. I get so nervous if he doesn't have it on, but he did FINALLY make it above 10, and I believe I am the only one here who uses a helmet.

So I think it time to ditch it! I am so nervous though...Do your kids bump into walls, door frames, cupboards? Do they often have bumps and bruises on their heads?

Hi Crystal

Aw, that sounds uncomfortable! Its really unlikely that a bump would result in a serious head injury. Most of the time, even for ITP patients, a bruise is just a bruise - no matter how colourful!

Just after Dougie was first diagnosed, he spent a day in hospital for some reason I can't remember now. When we were finally allowed home, he was so excited that he walked straight out of the childrens ward and into a door...........resulting in a fantastically sized egg on his forehead! Thinking this was bad, I turned him back round into the children's ward and told the doctor what had happened. She ummmed and arhed for a while and then disappeared off to find an ice pack. After about 10 minutes she said he was fine and we could go home. My point (badly expressed) is that bruises don't matter most of the time, same as they don't for non-ITP people. Kids without ITP get the occasional egg on their heads too.

I'd try it for a while in the house in situations you feel more comfortable with. If it drives you mad with worry, stop the experiment, if not, extend it a bit.

I'll be sending you calming vibes!!!!! (or wine!)

Ali

Ha..Thanks Ali, might need the wine and lots of it

I am not blaming anyone for the way I worry, I do that naturally..but when he was diagnosed the Dr who saw him (just a ped) was going to send him to children's by helicopter and was planning on him going to PICU..It was so scary and unreal and all this critical talk. I had no idea what was going on I couldn't even remember what a platelet was and this DR was making it seem he was on death's door!! LITERALLY... The reactions of that day have always stuck with me, and I had a very hard time calming down!!

Children's hospital was MUCH better..but I was already convinced if they didn't get his platelets up it was the end..

I agree - a calm doctor to start with makes a huge difference.

In contrast to your experience, I remember staying with Dougie at the hospital when he was first diagnosed. A nice calm doctor came and woke me up in the middle of the night, explained that he had ITP, but it would probably go away quickly. I remember getting her to write it down because I couldn't remember the full name to tell my husband. The next lunchtime we were allowed to take him home and I think his count was 5 so he was only in about 24 hours. The doctor just said he needed to calm it down for a few weeks until he was better. We didn't even get a phone call about a follow up appointment until a few days later, and when I told the nurse that he was out running round the street, she was horrified. But by then I think I had decided it wasn't going to be too bad, and although I've had a few wobbles along the way, I've mostly stuck to that way of looking at it. I have never really considered it as something that is life threatening and now I don't even think it is particularly lifestyle threatening.

Maybe I am too laid back about it?

Ali

Crystal, hows it going? How much wine have you drunk?

It always amazes me how different doctor's reactions are and how that molds the patient. Some people get calls and are told to 'rush to the ER, don't bump yourself on the way and wrap yourself in cotton' and others get a call and are told to 'come in to the office in a few days'. If a doctor acts panicked initially, the patient picks up on that and it takes a long time to calm down.

Good luck to you parents who are literally responsible for the decisions you make for your children. That would be much harder than making decisions for yourself. I have a daughter with an autoimmune disorder and we've had to make decisions, but luckily, she was over 18. So we both did some research, discussed it, and came to a decision together. She valued my input and agreed with my thoughts. I wouldn't have liked having to make the decisions for her.

Ali-Haha I have been good..No wine needed (many mini heart attacks though) So far it has gone alright. No major bumps to the head I haven't really inspected under the hair because I am afraid I will freak out but I haven't noticed any bruises yet! He gets counts tomorrow and I am more nervous than normally..

We were there so many hours the work day was over, so the Dr on call came over..The more the original Dr talked the more upset and scared I got. I eventually looked at the on-call Dr, and asked is my baby bleeding in the brain? She said no we don't believe so, it is just a risk and that why he going to children's. She explained things to me, and I started to understand a little, but the hours spent with the original Dr that day only got worse!! If I had to spend the rest of teh time with just her I probably would of been going in my own ambulance.

Choosing what to do for your child can seem impossible, with ITP I have struggled so much. Him being refactory and the Dr's saying I can TRY this but without knowing the odd's of it working themselves has made me feel helpless and hopeless so many times..

He is so much happier now that he isn't wearing this helmet, and I pray everyday this is OK but after so long it is wonderful to see him playing like a toddler should (minus super-man off the couch,I could live without that!!)

Well done Crystal!

I am so pleased that I've never come across your doctor. Out of sight, out of mind is how I always work with bruises - if you can't see any and the kids aren't complaining about any, then they are probably OK. Unfortunately, I can see Dougie's at the moment, but hey, they are only bruises....

Count is 13 Now I am gonna need the wine..He is wearing helmet at moment. I feel bad I don't think that I am going to keep him in it all the time because it doesn't seem fair!! He has gone 2 weeks without it, and hasn't had counts for 4, he may of been this low, maybe lower without me knowing it. I just need a minute to adjust..I do see why people rather not do counts all the time.

I agree with the out of sight out of mind, I hate getting him ready for a bath or changing his clothes I always find things I wasn't seeing earlier.

Thats disappointing. It might help to count in tens rather than units here - 0-10 = one set of rules re activity and helmets, 11-20 = the next set of rules, etc etc. Maybe you need to open the wine