I have noticed over the last two weeks that Matix is extremely tired. He doesn't have energy to do much of anything. He still gets up and moves around, but would rather lay on the couch. This is very abnormal for Matix. He used to run around the track faster than me. We have Vacation Bible School this week and he went the first night and didn't participate much. Last night he didn't want to go. I thought he was just trying to get out of going so I said, no TV, no video games and he said ok and went right to sleep at 4 p.m. and slept until 8 p.m. when I had to pick the other kids up from church. Then he went back to sleep around 10 p.m. and slept till 8 a.m. this morning. He slept the entire time through church last Sunday and didn't want to go to Sunday School, which is rare. I don't see any petechiae. He does have minimal bruising, but is a bit pale. I don't know what to do anymore!!! I just want to scream
He does have fatigue often, but never this much. His last treatment was 3 weeks ago, WinRo. Thanks for always responding to my posts. I just feel like I am going nuts over here. I wish I knew someone close by that had a child going through the same thing to talk to. I know every child is not the same, but no one understands unless you are in it! I did talk to Hem/Onc and they think he is probably dropping so just let him rest.
The immune disorder can cause major fatigue. It seems to be a bit like fatigue and ITP.. the doctors just don't admit to it but it really is true.
Poor little mite, I know how he feels. I have had to go to working part-time because I just couldn't manage a full week without a break. It took me a long time to realise that the tiredness I feel is going to be due to the immune disorder.
At the conference they talked about fatigue and itp. They def are associated. One reason is that platelets carry serotonin to the brain and if counts are low, your brain can be receiving less. Also, your body is producing more cytokines which are inflammatory agents which can also cause fatigue.
What are his counts? I find that when I am below 20 I can barely more, but everyone is different. When I am above I live a very normal life.
He bled this weekend (nose and gums), had bruising, but only a few spots of petechiae on his body. He did have a few spots on his throat. I didn't take him in over the weekend as I originally planned because the petechiae wasn't as bad as it usually is. Normally when his platelets are low, meaning zero, he is covered in petechiae. It was different this time. I don't know what to think anymore. Always a roller coaster!!! He is having a draw this morning.
I feel your frustration. My son Cam has been experiencing awful fatigue. He's 17. We are new to itp (2 months officially now) so I'm confused as to what is typical - if there is such a thing- and what is teenage behavior. My son was diagnosed as ADHD his whole life, never sitting down and now he spends 2/3 of his time on the couch. How old is Matix again?
As a parent I feel so helpless. I am so good helping my students and their families and my patients. I know what to do and I've problem solved some very difficult situations with success but all I can do for my own son is make him laugh and support him. Where do you live? We have no one around us that has even heard of it. Cam tried prednisone with horrible reaction and no rise in platelets, ivig 8x # improving to 37 once but usually below 20 and never for more than 4-5 days. We switched to pediatric hemo and he's tried whinro 2x but platelets never above 52. The dr wanted to try promacta but insurance denied. The other day Cam scraped his foot slightly and it bled tons and then slightly for two days. He looked at me and said "now I understand what is wrong with my blood". The awareness was kind of comical.
If you have need to verbally vent you can email me at email@example.com and I can give you my number. I'm very much a naturalist and believe food heals and I've been doing a lot of no traditional research to accompany his conventional meds. I do discuss them with his dr.
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