BLOOD TEST PART 2

Thing is how do you know where a count is on that rollercoaster ride - way up, way down, bottom, top??????

Dougie's today is 24. Pretty good to what I was imagining, but it depends on where it is going to go from here on............... He is soooooo tired on 24, I can't imagine how he would be if it goes down further. When he was always on a low count last year he never had this tiredness, and its by far the most debilitating consequence he's had from ITP so far. Even being careful with activities hasn't had this bad effects on him.

ONWARDS AND UPWARDS

Ali

Ali -
Sorry Dougie's count has dropped. That exhaustion always hits Brady when his count drops to the 20s, along with dark circles under his eyes and pale skin. I try to make sure that Brady goes to bed a little earlier and eats a little healthier when he's low like that.

Knowing where they are on the roller coaster is the hard part. After all these years we know that Brady has only increased on his own one time. He can hold at 50k, even down to 30k, for a good long while. But once he gets to 20k, we know that his count will rapidly fall and he'll start getting nosebleeds, etc. But everyone is different, so you just have to try to figure out a pattern I guess. Since Dougie has increased on his own before, he can do it again, right?

Hang in there - maybe he'll be able to rest and bounce back over the weekend!

Beth - mom to Brady (age 13, diagnosed 1/18/02)

Hey Ali,

Sorry to hear that Dougie has dropped into the 20's again but he has had some really good numbers in the past and i'm sure he will bounce back to better numbers. Tell him to hang in there!!!

Deanna

Yeah, I think it will bounce back up again too. I just think it is quite difficult to watch him being so exhausted. This tiredness has only been an issue since January, he never had it before then, or if he did, it wasn't really bad becuase I never noticed. He's just gone to bed early again - its only 6.30 pm.
He's always pushing bedtime to make it later than I want him to go, so I know he must he really feeling it at the moment.

On the positive side, he;s been with my friend today with her son and my younger son, They've been to Beeston Castle which is near where we live (medieval ruined castle) and have apparently been playing quite hard all day. Anyway, he hasn't got too many new bruises which is good!

Ali

P.S. Deanna, how is Devyn doing count wise - was assuming from the Itching thread that he was a bit down again too

Ali,
24k...that's about what I was thinking he would be...in the 20's. I agree with Beth that it may have to do with the drop rather than how low he is. One other consideration: is it possible he is depressed over his illness in combination with the affects of the illness? Chronic depression causes fatigue, and the person might not even be aware they are depressed. Its especially difficult to diagnose and detect in children because the symptoms are different than with adults. Here is a list of symptoms:
www.aacap.org/cs/root/facts_for_families/the_depressed_child
If one or more of these signs of depression persist, parents should seek help:

Frequent sadness, tearfulness, crying
Decreased interest in activities; or inability to enjoy previously favorite activities
Hopelessness
Persistent boredom; low energy
Social isolation, poor communication
Low self esteem and guilt
Extreme sensitivity to rejection or failure
Increased irritability, anger, or hostility
Difficulty with relationships
Frequent complaints of physical illnesses such as headaches and stomachaches
Frequent absences from school or poor performance in school
Poor concentration
A major change in eating and/or sleeping patterns
Talk of or efforts to run away from home
Thoughts or expressions of suicide or self destructive behavior

I know Tim was having some issues with depression, and still fights it, because of the ITP and how long it has been hanging around this time. He's finally starting to perk up a bit and be less moody since he's got a break.

Hope that helps.

Hi Ali,

Devyn goes for a blood test the first week of April, it will be a month since his last test....he was at 66,000 then, but he has definitly had moments when i'm sure he has dropped lower. Right now i think he is low due to his mood and some petechia, but not too much bruising as of right now. I'm not feeling to comfortable with how much time his hemo wants to leave between blood tests so when we go in April i will ask to do them closer together....i would feel more comfortable if we did them 3 weeks apart instead of a month. i know it's tough on him to get a blood test done but i really hate not knowing what he is at, especially with him being an active 2 year old.

How long between test does Dougie go??

Deanna

Donna,
That list made me think twice - Brady has had a bit of a tough year and I need to give it a little more thought. After 7 years of dealing with this he's bound to suffer from some depression.

Ali -
I'm pretty sure we went to Beeston Castle when we visited our friends in Manchester the summer before last. Is that castle within driving distance of Manchester? We had so much fun and it was an absolutely beautiful day. The boys were fascinated by it all. We also went to some famous pub that was fairly near there. Small world!

Beth - mom to Brady (age 13, diagnosed 1/18/02)

Deanna,

Dougie only has hospital appointments once every 3 months. But the local hospital is happy to do a test anytime we want one (good old NHS!), so sometimes we make an appointment if we think his count is low or if he wants to do a specific activity which would need a good count. Mostly to be honest, because then Dougie believes us and adjusts the danger level in what he does - when it is just us saying it, he carries on as normal. He only gets a thumb prick so its not horrible for him - in fact, he's become so laid back about them that the nurse now says "ouch" for him! I find that ringing up when we have a reason for a test is working a lot better than a fixed routine of weekly or fortnightly or whatever. I hope that Devyn is ok when he has his next test anyway

Beth

We live south of Manchester so it would almost certainly be the same place - small world! Its on a sandstone ridge so you have to climb to get to the castle, and once there you can see the whole of the Cheshire Plain (on a good day anyway)?? We used to take the boys nearly every weekend when they were smaller because it was such a good place to play - LOL, really good memories of them playing Lord of the Rings there, attacking imaginary Auks with wooden swords!!!!

Donna,

Your list is very interesting, so much so that I haven't quite decided what I think about it. Dougies extreme tiredness has only happened 3 times now, all of which have been since January and "seem" to have coincided with a low count. Its a lot more than being normally tired, he is just really exhausted. I can't see why because he wasn't like this last year when he had lower counts. Maybe as you say its to do with the drop rather than the count itself. Certainly petechiae are like that. However, he is also definitely very cross about ITP at the moment - just thinks its been going on for long enough now I think. We all try to play ITP down, and it doesn't have a huge impact on his life, but I know it is there at the back of his mind, bothering him. I am going to mention both the tiredness and his mood to the doctor when we see him in April. Its very hard seeing him like he has been the last few days. Anyway, his count should bounce again soon, and then I'll be complaining because he will be bouncing round the house like he's been on too much food colouring or something!!!!


Ali :laugh:

Danica gets really tired when her count is low - and with dark circles under her eyes. In fact, lately, it seems that the dark not only is noticeable under the eyes, but on top as well (the eye lids). As you know, she drops an average of 20K per day, so I would imagine that her sharp upward and downward counts must take some sort of toll of the body.

Ali - you never know - maybe Dougie will start madly cleaning his room one of these days!! You will know that his count is really low if all of a sudden he starts mopping the floor, or cleaning the bathroom. ha ha.

Danica just brought home her report card yesterday. Wow - she has missed 30 days of school (out of a possible 120), and still managed to bring home all A+, except for phys ed in which she got an A. We were quite happy with that.

There sure is a depression issue with ITP - we do see some signs in Danica at times - although with a girl this age, it is hard to tell as the "female hormones" are also playing a part at this age -- 12. She sure does not like to talk about her illness to anyone at school. She seems to be embarrased.

Michelle - mom to Danica

Michele,

I LIVE for the day when Dougie (or any of my kids) starts doing housework in an obsessive manner. However, if it happened, I've a feeling that I would be worried about his mental state more than his platelets! The boy really doesn't notice dirt or mess.

He seems a bit more energetic today, if still a bit tired. But he's going round his friends for a sleepover tonight - don't know why they call them sleepovers because there is sod all sleeping done! And the clocks go forward for daylight saving tonight, so less sleep there too. Still, there is no school for the next two weeks, so he can catch up next week.

Hope Danica is doing OK. I would say that I hope she isn't cleaning, but that seems like it might be a positive benefit to you!

Ali

Beth

www.english-heritage.org.uk/server.php?show=nav.13495h

Is this where you went?

Ali

Yes, sometimes she drives me crazy with her cleaning, but, all in all, it is definately a benefit for me. Can you believe this - when we were in the city for IVIg on Tuesday, we stopped to get some groceries, and what did we buy - a swiffer wet jet to clean the floor because we needed a new mop. She was so excited! I know, I know, she needs to get out more often.

Danica is super tired these days, but I am thinking that it could be effects from the Decadron (I hope that is what it is, and not a low count). I am keeping my fingers crossed on Wednesday that her count is good. The 77 that she had the day she started the Decadron was AMAZING. She is usually around 20-30 by then, and I am not really sure why she was so high the day we started, but I was happy with it.

If she has a good counton wednesday, then I guess we can thank the Decadron for that.

Michelle

Why oh why didn't I give birth to a Danica!!!!! A kid who gets excited about cleaning AND gets good marks at school! Dougie does ok on the school bit, but cleaning is not in his vocabulary.

Dougs is out playing football at the moment. He had a bit of a scare last night at his friends house. They were playing darts, he got one in his hand, and the bleeding wouldn't stop for ages. His friend's mum said that after 30 minutes, they were about to call us but then it stopped by itself. Not necessarily a bad thing, because a bit of a scare might be just what he needs to make him a bit more careful......

Because in the summer Dougie didn't get this tiredness thing with low counts, I never really understood about it when you said Danica got tired. She has my every sympathy if she is anything like Dougie.

Ali