Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Restricting Activities

More
14 years 5 months ago #361 by Angeleyes75
Restricting Activities was created by Angeleyes75
My son who is nearly 3 was dx oct 08 with a count of 5. The next 6 months were as series of ups downs and in out of hospital. Since then we have been sitting between 50-65 with the occasional lower drop but nothing below 20.
Doctors have told me when his counts are low limited his activties and when there higher he can pretty much be normal.
But what about inbetween.How much should I limit him with counts of 50-65? We live in a country area and spend alot of time outdoors. His older siblings ride around on motorbikes all the time we have ourselves taken him on the bikes only when i feel he 's having a good week. How do you do it? How do you know what they can and can't do each week without getting a count done every day. Especial when syptoms can't always be relied on. :unsure:

Please Log in or Create an account to join the conversation.

  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
14 years 5 months ago #367 by Angel85
Replied by Angel85 on topic Re: Restricting Activities
I go to work and do normal everyday things with counts around 20-30. It is hard when your unsure what the count is if they are not being done weekly, but i can usually tell when they have dropped, usually i get heaps of brusies and petechiae and even when i don't, i usually get really tired and just generally feel unwell, call it women's intutition maybe, i'm not sure.

I think you just need to be careful, but not be too overprotective i suppose is the word. If his counts are around 50-65, then he should be right riding on the motorbikes, 50-65 is quite a good count and most times at that count, they wouldn't even treat it, they would just watch it.

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #371 by alisonp
Replied by alisonp on topic Re: Restricting Activities
Hi

I had the same issue with my 11 year old. The first 6 months when his count was always under 20 were a doddle, but since then it has been all over the place (124,33,60,16).

I am not sure if this is right, but I work on the basis that he gets on with life as normal if his last count was over 30 or so. If he gets symptoms, I make an appointment for a count. If his count is under 30, I restrict for a week and take him back for another blood test. His consultant says there are no restrictions with a count of 60. I am a lot more insistent that my children ALL take normal sensible safety precautions now - helmets when they are on their bikes for example.

I should add that Dougie has never had any serious bleeding issues, even with a count of 1. I've also found that that his symptoms are a pretty good guide - before last weeks 16 count for example, he had petichiae, some bruising and most of all he was very very tired. He only seems to get symptoms with a count of 20 or under.

Hope this helps, Ali

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 5 months ago #403 by Sandi
Replied by Sandi on topic Re: Restricting Activities
In the Parent's Section, there is a posted article about Sports and ITP that you might use as a guide.

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #421 by sandpit
Replied by sandpit on topic Re:Restricting Activities
You might learn to read your son, see clues that are related to his platelet counts. My teenager really droops, grouches and becomes uncooperative when her platelets are crashing, before we even know it. Then she sleeps until she bounces back. And teenagers aren't that different from preschoolers!

I always made all my kids wear helmets on bikes, elbow pads, wrist guards on skates, etc. We tried to get the soccer teams to wear head gear against concussions cause they should but we were the only paranoid/informed ones. Lots of it is common sense for all so the ITP kid is not singled out. (like seat belts in a car).

Please Log in or Create an account to join the conversation.