Stupid worrying mum

I need a firm talking to!

Dougie got up this morning covered in petechiae (everywhere) and bruises on his face which he said he thought came from leaning against the bedhead. It had to be today when I was dropping him off at his adventure camp didn't it? - although to be fair I knew from his count this Monday that it was going to work out like that. Decided that the consultant had said on Monday it would be ok regardless of his count, so we headed up the M6. By the time we got to Keswick (three hours later, huge traffic jams) he had lots more petechiae under his eyes. Concluded that he would probably kill me if I said we were going home, so I dropped him and his friend off at Borrowdale , left his notes with the leader, and spoke to his team leader about ITP. Drove back to Keswick, stopped to get a drink before I started the drive home and seriously struggled not to turn round and go and get him. Eventually pulled myself together and drove back down the M6 home.

Just spoke to my mum and she said she had had a similar experience when my sister had an epileptic fit as a teenager and went on a school trip two weeks later - she said that she had to make herself let her go.

So why am I sitting here worrying myself silly? My head is telling me he will be fine and have a great time - its just the rest of me being irrational.

Ali

I'm not claiming to be an expert or anything, but my guess is that you're worrying because you're a good mom.

Hope this helps.
When i tend to get caught up with my emotions and have a hard time deciding on what to do, i reason with myself and sort to logic and reasoning.I try to clear my mind and think rationally. And i most often end up making the right decision when i practice this.

Thank you Michelle and Peter

I've had a long drive over to Yorkshire and back today, and I've had a chance to calm down and finally get a grip!

I think I am blaming all my worry on ITP, when really I am also worried because this is the first time Dougie has gone away without us (other than with his school or to see relations that is). I know he will be fine really - after all I haven't heard from the camp yet, and no news is good news!

I am not usually neurotic honestly!!!!!!!

Ali

and no news is good news!

this so true. I have come to hate text message beeps when my son is at school.

If you'll allow me a thought... I'd replace "Stupid worrying mum" with "Loving and caring Mum". It's virtually impossible for us to not worry for our children. We can however learn to accept and cope while relying on GOD to walk with us during such times. It doesn't happen overnight (at least it didn't for me) but it can happen. Perhaps as other have said, this is our new "normal". That said, you know we're all here to help one another work our way through our new normal.

You'd have thought I would have aclimatised to the "new normal" by now - Dougie has had ITP for over a year now. I worried less than this when he was first diagnosed and his count didn't go over 20 for 6 months!

I am convinced that their is no such thing as NORMAL. Don't beat yourself up about worrying, I would think it more strange if you were not worried! You are just a mom who loves her son and doesn't want anything to happen to him. Try to stay stong and remember all the advice you have given to others and have faith. It will be ok. Lori

Home safe and sound. Hasn't stopped talking about the things he has done - gorge walking, climbing, kayaking, sailing - so clearly had a fantastic time. His legs look like he has been beaten with a cricket bat, but otherwise, fine. All that worrying for nothing......... Hopefully I will know better next time!

Ali

Hey, I can totally relate to your "code name". We've only been going thru this for 4 months with severe low counts but the doc is starting to talk "chronic". Can you tell me..what have u tried for Dougie? Also, how old is your son..mine is 12 and so no sports has been horrible. What does your doctor allow when counts are below 20K. Also, pls sorry, one last question..were his white blood cell counts ever below the normal range and did they do a bone marrow biopsy on him??

The unknowns with your child are the worst I think. I could handle it so much better if it were me!! Thx again..Karen

Hi Karen

Dougie is 12 in September and was diagnosed in May 2009. First six months his count rarely went over 15, mostly below 10. Had 3 week go at prednisolone, but thats its in terms of treatment - kids in the UK don't usually get treated for ITP (think the figure is only about 20%). We are lucky because he rarely has bleeding, even with very low counts. His count tends to fluctuate now between about 50 down to 10. He did have a bone marrow test last September, but I think that looking back, this was unnecessary. However, none of his other counts have ever been out.

When Dougie was first diagnosed, the doctor didn't want him doing sports, but now we let him get on with pretty much anything with some rules - as you've seen he's just had a week of adventure activities camp and he plays soccer but isn't allowed to head the ball. He rides his bike, but I am 100% strict about wearing a helmet. The only things he is banned from are rugby, trampolining and boxing

Its all too easy to worry about ITP as I found out last week. But most of the time it is unnecessary. Kids survive it remarkably well. Although he is not better, Dougie improved just after the 6 month mark, so don't give up hope yet - 4 months isn't that long. There are other parents on here whose kids get various treatments, so if you post in the parents section you should get replies which might be more helpful than mine.

Good luck, Ali

P.S. If your son wants to contact another kid with ITP, message me your e mail and I will get Dougs to "chat"

Hey thanks so much! Its been awful for him not to be able to play soccer so i am encouraged they let your son play. This white blood cell low count has really got me feeling nervous. Do you still get weekly blood tests or have you stretched it out. They seem so pointless..i know when his platelets are low by looking at his body.

Hi Karen

I don't know much about white cells, but I would think that if his count is heading back up, there probably isn't a lot to worry about. One of my other kids has had four or five very low white counts, but he is heading back in the right direction and the haematologist doesn't seem too concerned.

I HATE weekly counts because they make me obsess about numbers rather than symptoms. And they change NOTHING! Dougie probably only had weekly counts for the first 3 months. His consultant is happy that he does 3 monthly, although we sometimes get it checked in between when we think it is very low just to persuade Dougie to slow down a bit.

I haven't got on top of this myself at all times, but I think that the trick with ITP is not to worry too much about it. Dougie's consultant says to treat it as a risk factor not an illness - bit like having fair skin would put you at risk of skin cancer. Doesn't mean that you are going to get a problem if you do something wrong - for example, Dougie has occasionally forgotten that he isn't allowed to head the ball in soccer and it hasn't caused him to have a brain bleed, but it makes him more likely to have one than other people. Incidentally, because we know that he doesn't have bleeding symptoms other than bruising and petechiae, we usually let him play if he is above 10, but only if it is supervised on grass. He was very very unhappy and depressed during the months we didn't let him play.

I think that people might be away on holiday at the moment, but there are other parents on the board whose kids are very active, so you might get some good advice from them about what to allow or not. Also, there are kids who get treatment, so they would know a lot more than me about that. Kids in the UK don't generally get treated for ITP based on counts, only the ones with significant bleeding.

Good luck with his next count

Thanks so much..what you said really struck me. Treat it as a risk factor, not as an illness. Praise God- sometimes its just a different way of saying the same thing that hits you, you know. I am so encouraged that they let him play soccer. Cade has never had any of bleeding whatsoever either..even when there has been a month below 10K.
When you said one of your other kids has had low white blood cell counts..did you mean that you have another child with ITP??

Ali,
Glad to hear your son made out fine at camp and is home safe and sound. I can imagine how stressful that must have been. I am still a bit nervous even though Ashton's last test was 184,000. Our doc says we can wait 4 weeks for the next test. Hoping things are still going up! It would be nice to have an uneventful start for school!

:)Lori