Worrying at work

Is it just me or do you spend the day worrying that school are going to phone to say your son/daughter has hit their head or has bleeding that won't stop, etc?

Just before my daughter was diagnosed I bought a franchise for classes for toddlers. I thought it was brilliant as it totally fitted arround the children (school hours and term time only). My husband is the main earner and so when I have my classes I have to keep an emergency phone on in case the school need to contact me. I find I spend the class worrying in case it rings. I know the parents would understand but I feel bad as they are paying for the class. So far we have had quite a few hospital trips due to Hannah hitting her head and I have had to cancel a few classes.

Do you work and do you find it difficult or is it just me being silly?

Hi Grasshopper

I remember that feeling well from when my eldest son was doing BMX. Every day he was out on his bike I used to know that it was only a matter of time before the ambulance was called. On one occasion his friend called me to say could I come and get my son because he needed to go to hospital but he wasn't able to speak to me, so I left work, jumped in the car and did a 40 minute journey in 20, worrying all the time about what I was going to find when I got there. Its a good job that Cheshire doesn't have that many speed cameras!.

I do worry a bit because where I work is a good 45 minute drive from where Dougie goes to school. One of my friends kindly stands in and collects the kids from school in an emergency. My work is very flexible, so if I do ever have to leave in a rush, its not really a problem, I just make up the time some other day. My husband isn't very contactable at work so he's a bit of a dead loss for emergencies!

Do you do tumble tots or something? It sounds like a great way of fitting in with school days and terms. I really wish that I had a job that allowed me school holidays off - this summer we had to pay one of our older kids to stay home and look after his little brothers, and I found that tough because of Dougie (who was out and about on his bike, playing with his mates, and no doubt doing "banned" things like tree climbing and football while I was at work).

I am sure the parents in your classes would understand your dilema, so try not to stress too much about it

Ali

P.S. I've never taken Dougie to hospital because of a knock to his head, although he's had a fair few - is that the advice you've been given?

Hello Ali,

Thank you for your reply. I'm glad it's not just me that worries! Yes, I do something a bit like Tumble Tots, but it teaches communication skills, it's called Talking Tots.

When are you told to contact or go into hospital? We have been told to contact them and go in if she hits her head or stomach hard due to risk of internal bleeding (I have no idea whether thats because her count is always under 20 or if there is the rule no matter how low or high the count is). We are also told to go in if she has bleeding that won't stop after 15 mins. She has never hit her stomach hard, but has quite often hit her head hard. They always tell us to stay in overnight for hourly obs. When she does hit her head it tends to swell for about 12 hours (one time it was a small hit, but by the following day her whole face was bruised). Sometimes the swelling seems to concern them and once she had a platelet transfussion because of it and other times it doesn't seem to concern them at all. It seems to depend a lot on who you see.

Dougie's count is nearly always under 20 too. Its probably just that different hospitals and doctors are very inconsistent in their advice about ITP and their reaction to it.

Things we would go to the hospital for:

1) Nosebleeds that won't stop in less than 15 minutes (got well told off for not taking him in for the one that lasted nearly an hour, so I am clear on that one now!)

2) Blood in urine or poo (I am not completely convinced he would tell me about this!)

3) Any other bleeding that won't stop in less than 15 minutes - don't think this means a graze or something but would include say a very mild nosebleeds that went on for days

4) A blow to the head that results in symptoms of brain injury - confusion, sleepiness, etc. Dougie also tends to bruise and swell badly if he gets hit on his face or head, but thats just superficial stuff, not a brain problem. The school let me know if he has hit his head, but they generally just keep him in the medical room for an hour or so to keep an eye on him. If I took him to the hospital everytime he banged his head, we'd be there every week........

Maybe I am too relaxed about ITP. If I ever have anything I am worried about, I call the childrens ward and speak to one of the paediatricians, but mostly I try to stay away from doctors - two years into ITP, I really feel like I've had enough of them!!!!!

Ali

We are 18 months into this and I worry when I see the schools number pop up. I worry less now since I know that it does no one any good. I work 1.5 hours from where I live so the days I am in the office it can be hard when I have received a call. Overall it is very normal to worry. My daughters numbers have remained below 20 for some time and I feel like she is fine for the most part. She has awful bruises but rarely bleeds.

Good Luck!

I too have had the worry. For me I work in my children's school district and have had to stop a therapy group to go pick her up for various things. Her count has stabilized this last year which makes it more comfortable. Follow your heart it's rarely wrong. Trust your instincts.
My thought is I don't ever want to be on Oprah saying if only I had..........

I forgot to say, yes we are also told to go in for blood in urine or poo bleeding (nosebleed or other) that won't stop after 15 mins. I must admit I never check her wee or poo and she isn't at the age where she would. She did have a cut a couple of weeks ago which took a day and a half to stop bleeding, but it was only for the first 10-15 mins where there was lots of blood, after that it just bleed a small amount and then kept bleeding every now and then throughout the week. There didn't seem enough blood to go to hospital, but maybe I should have.

All doctors and haematologists seem to think differently. Our haematologist has told us that we will probably have to tell the doctors what does or doesn't need to be done as they don't know enough about it! However, sometimes I feel the same applies to our haematologist - she says that feeling tired is nothing to do with ITP and until last week she was certain that Hannah was going to outgrow ITP very soon as she couldn't have chronic ITP because she was so young!! At least she now agrees that her count is pretty much stable and it's not going down at the moment. She has definately had a low platelet count for nearly a year now, but it looks like it has been more like 3 1/2 years.

Hi Grasshopper,

I send my 18 month old to preschool in a helmet so I can worry less. If I didn't work on site with her I think I would worry much more as you do. Her counts just went up to 70,000 this week so I didn't send her in her "pretty hat" today. She bumped her head on the playground this morning and we are home now so I can watch her. Maybe I'm overreacting, but I would have a hard time forgiving myself if something went wrong because I under-reacted. Now I do have a little guilt for leaving work again. It's certainly hard trying to find the right balance of it all.