I feel sorry for anyone reading this - think I am just having a really whingy, worrying, sort of weekend. Dougs and me have both been a bit phased by the reappearance of obvious symptoms in the last month. Its easier to ignore when you can't see any symptoms. I am normally quite positive, honest!!!

Norma, its very reassuring to hear that other people's children have a similar aversion to the issue being talked about. When I think about it, I use a similar sort of system to yours with Dougie's scout group. When I drop him off, I tell the leader that it is either plan A (few platelets) or plan B (get on with anything). Dougie hardly even notices, and definitely no-one else does. And I have a good system going with his class teacher at the moment where I email her if I think/know his count is very low, and she informs everyone accordingly. Dougie didn't even know I did this until recently when he got caught out trying to play footie at break with a count of 16. He tried to tell the lunchtime supervisor that his last count was over 100 but was well caught out!!! Ha ha! But it is a nice example to explain what I am concerned about - if he thinks he can get away with it, he ignores all instructions to take things a bit easier. His dad is probably not helping to be honest because he bends the rules if he is going to be at an activity with Dougie. So last weekend they went to the ice rink. They came home perfectly safe, but I may have to divorce him yet - LOL!

I just need to stop worrying and think about things normally again. Its lovely to be able to talk to you all when I am panicking though because other people don't really understand what the problem is.

Thanks, Ali :silly:

In the past, when my teen did not want to be "different" or to have me discussing her condition in her presence, I have spoken with school or camp officials to try to explain her condition, her attitude about it, the fact that she doesn't want to talk about it, and the things that might be warning signs. In this way, I felt they were better equipped to deal with it if something happened, but she didn't need to be pointed out or embarassed by the process. I made a special point of ensuring her PE teacher understood ITP. He was a gem! He took her word for it when she knew she needed to take it easy, and likewise when she told him she was in good shape to play whatever sport they were doing. He always asked her privately if he had a question. Last summer, she was doing so well she worked on repairing houses in a poverty-stricken area, with a church charity. My good fortune was that her assigned worksite leader was a physician I had met before through mutual contacts. We had a quiet word, and I felt so at ease once I knew he understood her situation. I know this is difficult. We're pulling for you and Doug. Hang in there.
Norma

My teen girls can't go to school, to a move, or to run a quick errand without a crime and safety lecture from their mom. (A lawyer - I only see it when it goes badly. No one ever ends up in my office because they had a great day.) We celebrate Smother's Day in our home. (And their Dad is even worse!)
Norma

My teen has had IVIG three times for low counts and for low count accompanied by nonstop nosebleed. The first time, the side effects were so severe, she returned to the hospital to rule out a head bleed. Then, we read more and learned the following strategies to help hold those side effects back: 1) good hydration, before, during, and after (encourage fluids); 2) tylenol before, during, and after; 3) benadryl (diphenhydramine) before, during, and after. "After" means continue for a day or two after the infusion ends. The first time, she had been pretreated with tylenol and benadryl, but it wasn't kept up during and after the infusion, because she tolerated the infusion and had no side effects during the hospital stay. Then, we got home, and about 24 hours after the infusion ended, she was having "the worst headache of my life." Those are ER buzzwords for a headbleed headache, and this kid had migraines in the past. If this was worse than a migraine, she needed a CT. So, after reading up on it, the second and third time she had IVIG, we did made sure the tylenol and benadryl were kept up. She also was given a low-dose decadron pill to take once a day for a few days after. We like IVIG for a "rescue" treatment, because she gets a good response that lasts a few weeks, and usually plateaus at a safer level than her pre-IVIG level. On her third treatment, she did so, and then rose to normal and has stayed at or near normal for nearly two years. IVIG is not known to give a permanent remission, but I believe it helped her stay at a safe level until her own system righted itself.
Norma

Joya,
I'm glad you are feeling better and in better spirits. I've encouraged my teen to be as healthy as possible in every way possible, not only in the hopes of a permanent ITP remission, but also so that she can better withstand ITP and its effects. She's not so good about taking the vitamins, but I notice that when she complies with the vitamins, eats a healthy diet, gets enough sleep, and exercises sufficiently, she's in a better frame of mind, and she appears healthier (better color, better skin, etc.). I'm sure you're going to find the right way to deal with ITP.
Norma

Ann

I agree with you. When Doug's counts were very low back in September/October and he hadn't gone above a count of 20 since he was diagnosed, I even told the doctor that I was more concerned about his mental health than anything else. Dougie's whole sense of identify seems to lie in being this really active sporty kid and ITP is just messing that up big style! I hadn't realised this before he was ill, but it has become really clear since then. And what ever we do to encourage his other interests, we don't seem to be able to shift this underlying perception. It doesn't help that as well as being active, he is also one of life's thrill seekers and risk takers!!

But then again I have really mixed feelings about treating ITP. Steroids didn't do a lot for him when he took them before, and I think the longer term side effects are really scary. I would be worried about treating him with blood products like IVIG unless it was an emergency, and rituxan just seems very frightening to me when I look at how it works - not to mention that no one has mentioned this as a treatment. Then there are the newer bone marrow stimulating drugs which his haemotologist thinks are the next thing to try - but my dad has a type of bone marrow cancer, and if there is any possibility of there being anything remotely hereditary going on there, I don't want to be messing around in any way with Dougie's bone marrow.

Just to add to everything else, I am very concerned about Dougie starting high school in September with ITP. In his current school, all the kids and the staff know about him, so if anything happened, everyone would know it was a problem. High school is about 4-5 times the size of his primary school, and given his current attitude to the illness, he won't tell anyone about it. The school is much bigger, so I wouldn't think that the communication is as good, and I can just imagine that Dougie will be playing rugby in PE without saying anything because he won't want to stand out. His dad keeps saying not to worry and Dougie might be better by then, but what if he isn't????

He went to the swimming pool today with friends, and when he just got out of the shower, his back is covered in grazes but without any broken skin. He only gets this when his count his very low, so not a good sign!!!!!!

Never mind, he might be gearing up for a big bounce upwards again....

Ali

I was diagnosed with ITP back in November when I was 16 weeks pregnant. My doctor said that in most cases things will go back to normal shortly after delivery. I have been taking dexamethasone since the diagnosis. It seems to work for a week or two each time they up the dosage, but then my count falls back down. The lowest so far has been 26000, and I was sent to the ER to have a platelet transfusion and sent on my way. Had a CBC done 4 days later and was at 59000. They are going to do IVIG, just waiting to hook up with a hemotologist as my OBGYN has been treating me so far. A little scared because there seems to be no warning for when your platelets drop so low and my doctor is concerned that the baby could kick me too hard and cause bleeding. I am hoping the ivig works so I can get off the dexamethasone. The stuff is a nightmere! Ive been on "shock" doses since the middle of december and it's ruining my life.
Thanks for listening to me vent and I'd love to hear from anyone that has any advice.

sandi i know that, but if the red blood cells count in normal range the all time , thank good for that, and the hemogloubine is good too ,i asked the doctors about his commbs test was positive twice , they said no worries, its just (+)so little,

Hi,
When I read about King Cake I wondered where you were writing from. I'm in Houston but originally from La. so I'm into King Cakes.....Ha! I've had ITP for about 6 or 7 years...I lose count of the years! My present count is about 30k.....I just started Promacta 2 days ago and am enjoying the new discussion groups. I've only had prednisone and one double, back-to-back round of IVIG. No spleen removed....hopefully in 2 weeks I'll be over 75k and that will be great for me.
Take care,

First reports of Arafat's treatment by his doctors, for what his spokesman said was 'flu' came on October 25, 2004 after he vomited during a meeting. His condition deteriorated in the following days and he became unconscious for 10 minutes on October 17. Following visits by other doctors, including teams from Tunisia, Jordan, and Egypt, and agreement by Israel not to block his return, Arafat was taken on October 29 aboard a French government jet to the Percy training hospital of the Armies near Paris. According to one of his doctors, Arafat was suffering from Idiopathic thrombocytopenic purpura (ITP), an immunologically-mediated decrease in the number of circulating platelets to abnormally low levels. On November 3 he lapsed into a gradually deepening coma. In the insuing days. Arafat's health was the subject of wild speculation. Various sources speculated that Arafat was comatose, in a "vegetative state", or dead. Palestinian authorities and Arafat's Jordanian doctor denied reports that Arafat was brain dead and had been kept on life support.

A controversy erupted between officials of the Palestinian Authority and Suha Arafat, Yasser Arafat's wife. On November 8, officials of the Palestinian Authority travelled to France to see Yasser Arafat. Suha Arafat stated "They are trying to bury Abu Ammar alive". Palestinian officials were reported to regret that the news about Yasser Arafat was "filtered" by his wife.[19] French law forbids physicians from discussing the condition of their patients with anybody with the exception, in case of grave prognosis, of close relatives. (Code of Public Health, L1110-4) Accordingly, all communications concerning Yasser Arafat's health had to be authorized by Arafat's wife.

On November 9, at 10 AM, chief surgeon Estripeau of Percy reported that Arafat's condition had worsened, and that he had fallen into a deeper coma. On November 10, a "high religious dignitary" visited Arafat and declared that it was out of the question to disconnect Arafat from life support machines, since, according to him, such an action would be prohibited by Islam.

Arafat was pronounced dead at 02:30 UTC on November 11]at age 75. The exact cause of his illness is unknown and controversial. Sheikh Taissir Tamimi, who held a vigil at his bedside described the scene, "It was a very painful scene. There was blood everywhere on his face. The blood was coming from every possible place. My first reaction when I saw the scene was that I didn't understand what was going on. I closed my eyes, and I started reading from the Koran..." When his death was announced, the Palestinian people went into a state of mourning, with Qur'anic mourning prayers emitted from loudspeakers from mosques, and tires burning in the street as a sign of mourning.

Hi Ali
I can't imagine going the long-haul with an ITP kid, especially one that wants to be active!

Would they deny trying crutches or a walking cast on a kid with a broken leg? Do they suggest kids with diabetes just try to hang on and see if it will pass? Then why do they expect a kid with ITP to do without the treatments that could allow for a more productive, healthy, active life? They may be 'band-aids' for ITP, but a real boost for the kids' heads! Normalcy, even if just for a few days...

I know for a fact this 'complication' can definitely impinge on the freedoms of childhood and their mental health. My then-14 year old daughter ended up with trictillomania (hair pulling) after less than a year of ITP! Just the ITP can make them feel extremely vulnerable. Add to it that now, they can't have the social and self-esteem benefits of physical pursuits, and the pressure valve that sports can be, and you have a steaming cauldron of disappointment on your hands, with no end in sight! And since Caitlin's counts kept dropping below 20K, they definitely had her on treatments, which introduced her to steroids, weight gain, elevated BP....which had their OWN effects on her head!

I know that in the UK, they don't usually treat in kids with few physical symptoms---but have you asked the docs when the psychological effects get taken into account during their musings? I feel for you and your son! Ann, Caitlin's (22) Mom

Blood disorders or bleeding tendencies: can not donate

Taken from www.bloodbook.com/donr-requir.html

i know what you mean i had platelet transfusion and a few days later was down to 90 and falling

have most of us, had been given platelets so we cant donate

Good to see they are back down, hope they don't go too much lower, 119 is just about perfect

Down, but not by much to 119, although sadly, my normal-ness has passed! Oh well, I knew it would not last, now I am back to being special! :laugh:

Julia, Sesame Street is not on here anymore, but I watched it in my childhood, and as you can tell, it has had a lasting effect :silly: !

Thanks Lili, but I don't normally do normal, so I was fairly certain, normal wouldn't last!!

Vanessa

P.S I only have to have a blood test every second day now

I think we were pretty lucky to where Caitlin didn't get the wild fluctuations that much, but I have definitely seen these high ups and drastic drops with some of the adults. These were Caitlin's counts when she first started during Phase 1 of the study (16 weeks): 10, 21, 27, 44, 32, 53, 79, 49, 77, 66, 67, 61, 80, 88, 74, 22, 36. During Phase 2 of the study, she had a couple of occasions where she went over 100, with her max being at 135. I remember there being one occasion where she was at 110 one week and then we didn't give the shot that next week, and by the following week she was down to 10.

I wish I had the breakdown of how often they upped her dose, but I think she ended Phase one on .4 mcg and began Phase 2 on .5 mcg because her count was so low with not being on anything "in between" phases and she had trouble with bleeding. She ended the study at .7 mcg and had been at that dose for 3-4 months. (I don't remember the exact dose when it came to the "powder", but once it was mixed with saline, we had to draw out .5 or whatever the dose was for that week.)

I think I recall that Jaxen went all the way to the maximum dose, but never really got above 50 except for a few occasions, but the drug kept him from being a bleeder. I believe he is on the extended study that was for 3 years starting in Jan. 2010.

It would be nice to see how many kids we actually have on Nplate. I know at the clinic where Caitlin attends, there are still only 6 kids total on the drug. Caitlin is the only one who has dropped out of the study.

I'm not sure what the statistics are, but I think I've noticed that here as well.

I found it in the hospital, while they were diagnosing me. The ER doc that admitted me gave me a printout about ITP and said "I think this is what you have" and while I spent a week in the hospital with them confirming it wasn't something else and them trying IVIG on me, I had my work laptop and googled and found this site.

It was an enormous help from the very beginning - the first doc that saw me after diagnosis wanted to immediately schedule removing my spleen. I posted, and was quickly told in numerous messages NOT to do that as a first treatment LOL.

Lots of other posts I read seem to mention wild variations in counts on N-Plate - is it common do you know?

Still good though compared to where he was. Heres hoping that next week is better again.

Ali

Sorry, I need a bit of a rant!

ITP is just boring now, and it goes on and on and on......and on.

We haven't had the best week. Dougie has had petechiae and some bruising again, and I think it is fairly safe to assume that his count has been less than 20. Don't want to take him for a count though because I want to have just one hospital free month! He just seems to have had enough of it all this week. He's been nagging on all week because he wants to start going to judo - not while he has wildly fluctuating counts, I don't think! And at Youth Club on Wednesday he got really upset and cross, almost to the point of hysterical, all because the leader asked him what his count was because he was playing this really rough game of basketball apparently. When he calmed down a bit we asked him what the problem was, and had about an hour of tears and shouting, while he explained that he really didn't want to have ITP any more, he hated being different to everyone else, he was embarrassed about the whole thing, he wanted to forget he had this problem, he wanted everyone else to forget too, he thought it was really unfair that he had it for nearly a year etc, etc. His dad tried to compare ITP to other illnesses without luck - i.e. Do you get embarrassed about having a cold? - no, then don't get embarrassed about ITP either. Dougs wasn't having any of it though. I tried to explain that some of his friends are different too, like Ayan in his class who has type 1 diabetes or the kids who wear glasses, but he doesn't want to or can't see the similarities - even if he could, he just wants to be the same as the majority I guess. The only good thing was that at the end of it all, he said that he could think of one good thing about it - he liked having the day off school to go to see the specialist in Manchester!

Don't get me wrong, I know other people have far more problems with it than Dougie, its just that we don't seem to be helping him to cope with the ones he has very well at the moment. Any ideas?

Some positives. I had a boring but very productive day at work writing terms of reference for the sub-committees of the charity I work for (yep, almost mind-numbingly dull!), we had fish and chips from the chip shop for tea (don't expect you americans to understand this, but no cooking and no washing up!), the weather forecast for Cheshire tomorrow is sunny not rainy, and I think that Dougie's count is probably about to bounce right up again.

Again, sorry for the ranting, Ali

P.S. How's everyone's kids this week - Deanna, Michelle, Donna, Karen, Pauline........

They were a bit over confident today. The nurse practitioner saw him and came back after consulting with the hemonc. They did the CBC, but he's not symptomatic so they assumed he'd be high again. They said come back for labs next week and even mentioned "weaning" him. I didn't say anything 'cause I know Tim and I know he would just let them know by his lab work that weaning was not going to happen (lol). So, we waited longer than usual and i told Tim "they are double checking because your counts are low". Then after some time we found out he is low (last week he was 86, this week 31). So they doubled his dose and changed the plan to see the hemonc next week instead of just coming in for labs (duh). No sweat thoug...we aren't freak'n out. Its just Tim.

They said he was at, about 110mcg last week. Now he's at about 220 mcgs. I don't remember the exact, that's approximate.

Day 2----I know that I'm premature about this, but I feel great. The hardest part last night was swallowing the pill ! Ha ! I really hope that I can help some of you out. Keep checking and I'll tell you EVERYTHING honestly.

These are the questions asked before giving blood in England and Wales. The NHS has around 1 week of stock for the different blood groups. Between Jan 14th and 24th stocks halved.


Are you aged between 17 and 65?
Have you already given blood in the last 16 weeks?
Have you got a chesty cough, sore throat or active cold sore?
Are you pregnant or a woman with a baby less than 9 months old?
Are you taking antibiotics NOW or have you finished taking them within the last 7 days?
Have you had hepatitis or jaundice in the last 12 months?
Have you had acupuncture, ear piercing, body piercing, tattooing or semi-permanent make-up in the last 4 months?
Have you received blood since 1st January 1980?
Have two or more members of your family (parent, brother, sister, child or other blood relation) suffered with CJD, variant CJD or other prion associated disorder?
Are you HIV positive or do you think you might be HIV positive?
Are you a carrier of the hepatitis B or C virus or do you think you might have hepatitis?
Are you a man who has had oral or anal sex with another man (even if you used a condom)?
Have you ever received payment for sex with money or drugs?
Have you ever (even if it was a long time ago or only once) injected or been injected with drugs including body building drugs?
Have you had sex during the last 12 months with someone who is, or may be, HIV positive, or a carrier of Hepatitis B or C?
Have you had sex during the last 12 months with a man who has had oral or anal sex with another man?
Have you had sex during the last 12 months with someone who has received payment for sex with money or drugs or someone who has injected drugs including body building drugs?
Have you had sex during the last 12 months with someone who has been sexually active in parts of the world where AIDS/HIV is very common? This includes countries in Africa
Have you had a serious illness or a procedure in the past or are you on medication at present?
Have you had complicated dental work (simple fillings and scale/polish are OK after 24 hours, simple extractions are OK after 7 days).
Have you been in contact with an infectious disease or been given certain immunizations in the last 8 weeks?
Are you presently on a hospital waiting list or undergoing medical tests?
Have you been outside the UK (including business) in the last 12 months?
Have you ever had malaria or an unexplained fever associated with travel?
Have you ever stayed outside the UK for a continuous period of 6 months or more?
Have you visited any malarious area in the last 12 months?
Have you ever visited Central/South America for a period of 4 weeks or more?

For the last 5 months, every 4 weeks I have 2 days as a day patient having 3 bottles each day Only had a mild headache. In the past had a fever. Twice i have had 19 bottles as an inpatient but it didnt last much longer than 6 bottles.