Five year old coping with ITP

Hi all,
Not been around for a while but I thought I just wanted to tell you of an incident the other night and how pround I was of my little boy.
He had been for a cbc on the morning. At bedtime as usual it took over an hour to get him off to sleep, which was in our bed.
As usual he woke during the night he woke to go to the toilet but didn't want his dad which was unusual but wanted mum to take him. When I switched the light on I noticed blood on his Pyjama bottoms first thought was he had bleed from where the blood was taken but when I looked at his face it was covered in blood his arms up to his elbows where covered I just composed myself and filled the sink and washed him down, when we returned to bed he had gotten 3 tissues out the box and they where sodden and the pillows where covered with blood.
Zac had tried to sort it out himself, he never complained or got upset but he is only five and I just wanted to say that he has only been diagnosed for nearly a year and I am so proud that he just got on with it.
It would be nice to hear of some similar stories from you mums/dads etc. They are tough lot of children out there and sometimes we forget that.

All the best,

Nadia x

Hello Nadia,

They are very strong and it amazing me daily. My son is 3.5 years old and he is my HERO! Because of various bleeding episodes, he had to be rushed to the hospital in the middle of the night. While I am rushing around to get things together for a hospital stay, he remains strong and calm.

I guess we can learn something from them.

Juwana
Mother of Gihan (3.5 years old) and Keoni and Kenji (6.5 years old)

Early in my child's ITP course, I started keeping a packed bag in the trunk of my car. A doctor friend had warned she would likely be hospitalized at some point, and this just made it easier. I kept a pair of pjs for her and for me, some basic toiletries and amusements (books, games, etc.), and a casual outfit for each of us to come home in. That way, when the bleeding started in the night and we needed to go to the ER, or we had to go straight into the hospital after a low count, we were ready. I also kept a couple of favorite blankets in the car. It made our little nest a bit cozier for the hospital night. This would be less stressful on both of you than running around gathering the stuff while dealing with the bleed and calling the doctor.
Norma

I used to have a bag packed at all times because my other son would go in hospital at the drop of a hat. He's been in around 40 times or more, with a typical stay being 10 days. It paid to have that bag packed.

Nadia,
My son is also 5 (6 in 3 weeks) and has had ITP for almost 11 months. He truly amazes me every day. He deals with it so well and is very aware of what is wrong and what he can and can not do and what is going to happen to him each week. One day I found a little note he wrote, "My name is Logan and I have ITP so I can not play rough". Just broke my heart. There are times I want to scream because is overly tired and irritable, but I take a breath and remember he is amazing!
Luckily we have nto dealt with a lot of bleeding except for a few nose bleeds even when is counts are below 10K.

Hi Nadia

Long time no speak! I was over in Stockton the week after Easter and I thought of you and Zac.

Your post made me laugh but for all the wrong reasons because it reminded me of my youngest son. He used to wet the bed until he was about 5. When he was about 4 and a 1/2, he must have worked out that getting us up to change the bed in the middle of the night really wasn't going down well; I got up one morning thinking that a miracle had happened because he hadn't got up in the night but promptly fell over a pile of damp and smelly bedsheets, pyjamas etc and gave myself a black eye. He had managed to get up, take the sheets and the quilt off his bed, change his pyjamas and find some clean blankets all by himself. I just wish he had found the washing basket at the same time!!!!! LOL - I am soooo ungrateful!!

I hope that Zac is doing better today anyway.

Ali

Hi all,

Thanks for the stories we worry so much and having a good story sometimes is all we need, When Zac went for his last bloods he said "I'll try not to cry this time when they do the needle" It brought tears to my eyes.
Zacs bloods are slowly going up but I still don't feel any better every month I'm just a mess when he has to go for a cbc.

Have a nice weekend to all in UK.

Nadia.

Kayla used to flip out when she had to have a blood draw nowadays she taps her arms and picks out the bouncyest vein for them to use. I think giving her some control over it has really helped calm her original nerves about them.
On the bleeding end of things you really made me smile with that story I could just picture it, Kayla's had so many bloody noses in the middle of the night I couldn't possibly count, and she does try to take care of them as best she can.Some she sleeps right through and she wakes up with a big mess in her bed. Our little people are such troopers with this nasty ITP the only time a bleed really scared her was back in Oct. when she started bleeding from her tear ducts. ( don't mean to scare any of you but this is actually a possibility) She had a nose bleed very high up in her sinuses and it ended up backing up into her tear ducts. Not fun poor little girl.

Thinking many platelets for all :kiss:
Krissy

Kayla used to flip out when she had to have a blood draw nowadays she taps her arms and picks out the bouncyest vein for them to use. I think giving her some control over it has really helped calm her original nerves about them.
On the bleeding end of things you really made me smile with that story I could just picture it, Kayla's had so many bloody noses in the middle of the night I couldn't possibly count, and she does try to take care of them as best she can.Some she sleeps right through and she wakes up with a big mess in her bed. Our little people are such troopers with this nasty ITP the only time a bleed really scared her was back in Oct. when she started bleeding from her tear ducts. ( don't mean to scare any of you but this is actually a possibility) She had a nose bleed very high up in her sinuses and it ended up backing up into her tear ducts. Not fun poor little girl.

Thinking many platelets for all :kiss:
Krissy