"normal" is good

I've just realised how much I've enjoyed the last four or five days with Dougie having normal counts.

He hasn't been spitting blood when he cleans his teeth - blood stained toothpaste and bleeding gums have got so normal he commented on it NOT happening the other day. He played football on Sunday and I didn't worry about it at all. And tonight he's gone to Manchester Velodrome to do BMX with the Scouts - and unlike the last time they went on the banked track when his count was about 20, neither of us are at all worried about him falling off. Its just NORMAL and lovely!

I know IVIg doesn't last forever, but I've decided to ignore ITP for a while and enjoy the good times.

Ali

A big wahoo for Dougie, how good is it for him to be able to just do things for awhile after all he has been through over the last few weeks, with his leg and the IVIG side effects. I hope that you get a decent break from all this.

Thanks Milly. I am particularly happy about the BMX. Dougie got diagnosed with ITP when he was ten and the week before I had promised him that we would go to the track that weekend so that he could have a try. Ever since then, I seem to have been saying "just wait until your count is better". So its been great this week to say, yes, you can go!!!!!!

What kind of leg issues did Dougie have? My daughter has had pain/aches in her legs for about 2 years now, so we know it can't be from the IVIg, but does it make it worse? Just curious?
My daughter's counts are coming back "normal" too. Her platelets are at 51,000, but I'm not sure if that was from the steroids or what? She had been weaned from everything two days before testing.
Happy for you and your son!
Stacy (P.S. I probably should have addressed this to Alisonp... sorry)

Hi Stacy

Dougie's leg issues were not to do with ITP - he had cellulitis just before christmas. Reading the boards, leg aches and pains comes up quite often, but I suspect that its more to do with growing children than ITP. My other kids without ITP have complained about their legs hurting just as much as Dougie does.

Dougie tried IVIg for the first time at the beginning of January. After a week his count was 175 and we go back for another count on Monday to see whether it is still good. He normally gets along fine with a count of about 10-20, but he misses sports so a "normal" count has been a real treat for the last week or so.

I don't know how long steroid effects last, but I suspect that your daughters 51 may have been boosted a little. Good luck with the next count, I hope it stays up.

Ali

Count was 77 today, at the end of the second week, so it looks as if he might get another week out of it - wayhay!!! Its good to know that IVIg works if he ever needs it, but I don't think we will be rushing to do it again, cos the headache and stomach cramps that followed were really horrible.

Moderately hopeful about the skiing - count was 32 today, and the consultant has said that he will approve it as long as he is still over 20 next week.

Dougie got IVIG?! Wow...I hope it helps him into a remission. It worked that way for time the first time...18 month remission...but alas, no more of that for him. How high are his counts?

Hi Donna,

I don't think its produced a remission, but its been a great three week break! Starting at the end of the first week, his weekly counts were 175, 77, and last Monday 32. He has got marks on his skin this week from playfighting with his brother, but no bruising so I am thinking maybe 20ish.

The doctor has said that his count has got to be 20 for him to go skiing next week, so I am crossing my fingers and toes and every other available body part that he hits this. I get the impression the doctor thinks we are slightly irresponsible for even considering letting him go at this count, but Dougie is really desperate to go and I think he will be safe - children who ski in Italy have to wear helmets by law, and he would only ever be skiing with a qualified instructor. The school are also really cautious about his ITP so I know that they would take great care of him.

I wouldn't agree to him having IVIg again in a rush - he had horrible side effects, and I felt quite strongly that we had taken a well child to hospital and made him ill, which can never be a good idea. Its good to know it works in an emergency though.

Ali x

Ali,
If he does get IVIg again, give him benadryl around the clock. It really helped Tim with his severe symptoms.

Ali -
In the end all the doctors can really do is give guidelines and we have to make decisions about our kids' activities based on our own comfort levels. Our doctor says that Brady should be at 100k before skiing but I'm sure he'd be safe at a lower number as long as he's wearing a helmet. We've treated before so that Brady could ski, but he's lucky in that his counts stay up for a good long while after treatments. I just took Brady in for a blood test because he really wants to go skiing now that basketball season is almost over, so we'll see what his count is.

Good luck - I hope that Dougie stays above 20k and gets to go with his friends!