I began NPlate in December, and am still on it. I get headaches, and I have insomnia, but I've had trouble sleeping before so I'm not sure if that can be attributed to the NPlate. I've had mixed results, and will probably have my spleen removed in the next few months.

I began NPlate in December, and am still on it. I get headaches, and I have insomnia, but I've had trouble sleeping before so I'm not sure if that can be attributed to the NPlate. I've had mixed results, and will probably have my spleen removed in the next few months.

I was out for a half an hour today in the sun, my foster dog had a play date and I was supervising, I was wearing a winter hat and coat but my face and neck were exposed. Now I've got hives all over my jaw line and edges of my face, and my neck. I took a benadryl. I guess I just had to test it again. Am I supposed to start wearing a hijab when I go out? I guess when I have a job it won't be so bad, I'll be indoors working during the day.

So Kim, apparently the only thing to do is the zyrtec, and benadryl, and maybe I should use a litte pred when it flares? I'm seeing my rheuma in about ten days and I am going to ask about this and ask if I should see an immunologist.
Grrr. Erica

VERY SMALL WORLD. I think know where Norton is but I am not a Teessider so I am not sure (only lived there for about 5 years). Gonna ask my husband in the morning cos he has gone to bed. I think it is close to where the road comes off the A19 and goes to Stockton one way and Billingham the other. If you carry on that road to its junction with Durham Road, my mother in law is about 10 houses up in the Durham direction. So yes, not far!

Next time I am up your way I might take you up on that offer of a coffee.....

Ali

wow your mum in law lives less than 5 minutes from us. What a small world. You might know Zacs school it is on Norton Green called Red House so his classes are only small his year is two classes of 16 children and he will stay there until 16 they have been totally supportive. If you are ever visiting and can spare an hour you are more than welcome to pop over for a coffee.

All the best,
Nadia x.

Hi Nadia,

My mother in law lives in Stockton - Durham Road to be precise. When I met my husband I was living in Middlesbrough. If you ever see a medium sized boy covered in bubble wrap at Redcar or North Gare or in the park, you can be pretty sure it will be my son visiting his grandma - she is absolutely paranoid about him getting injured! In fact, I am going to tell her about you and Zac, because she seems to have made it her mission to find someone else with this illness ever since Dougie got diagnosed, and she still hasn't succeeded. And I would prefer to go to Hartlepool rather than South Tees Hospital too!!

Your hospital must apply different criteria to treating than Manchester - Dougie had 6 months of counts less than 20 when this first started, and he went down to 1 on a good few occasions. He did have prednisolone a couple of times, but mostly because our local hospital is so jumpy. The Dr at Manchester just doesn't do treatment based on counts. He is a haemotologist but specialises in ITP. The good thing is that he has a specialist nurse who came out to Dougie's school to explain about the illness.

I am also very refreshed to know that my husband isn't alone in his approach!!!!

Lots of luck, Ali

Hi again,
I have just had a little chuckle to myself new years eve big ben had just chimed the new year in, the champagne had just popped and I burst into tears saying its not fair that Zac has ITP and my cherished other half said its ok Zac will be back to normal soon. I'm not against the male of the species but i could of throttled him. Had he not heard a word I have said for the last 7 months. I'm sooo glad that I am not the only one that has to deal with ITP and daft other halves. We live in Stockton-on-tees about 2 hours from Manchester. Our consultant is a Dr Seerat and we go to Hartlepool for bloods, although there is a closer hospital they saw Zac within a week of his first low platelet count. Zac is used to going there for bloods so I am happy for him to travel. There is a haemo involved but I don't know who that is I just get told that the haemo is happy, not happy etc. If Zac goes under 30 they will treat him but I haven't gone there yet his lowest was 37 so far. Is your consultant a specialist in ITP i'm sure I read that there is one in Manchester.

All the best
Nadia x.

P.S Nadia - my husband and me are the same. I worry and research, my husband just keeps repeating what seems to be his mantra "he'll be better soon.....". Its been nearly 10 months now, so I am not sure what "soon" means in his vocabulary anymore!!!!!

Hi Everyone

Thanks for the replies. Have gone back to my usual less-worried self. Dougie, his older brother (13) and his little brother (9) have been play fighting this afternoon. He is covered in bruises, but happier. Have decided I've got to trust him more to make good decisions - not easy in the face of evidence to the contrary, but I am going to try.

Prompted by Pauline and Karen#s posts, I have asked him what he would like to happen. When I have asked him this before, he has always said he wants the ITP to go but he doesn't want to get drips or injections or take tablets (yep, realism isn't one of his stronger points!). Today he said he would like to get treatment so that he can play football again and do judo and rugby when he gets to high school. So maybe we will talk to the haemotologist at his next appointment in April.

Nadia, where do you live and which hospital does Zac go to. Dougie goes to see a Dr Grainger at Manchester Royal Childrens Hospital. He is on three month visits. Sometimes I take him into our local hospital for a blood test though in between. They are not experienced with ITP so they panic more - they would still have him on weekly blood tests and doctors appointments if I let them! 4-weekly must be a nuisance. We live near Crewe. I don't know any support groups in the area, but could ask at the hospital next time we go. Also, you could try the ITP Support Association - they might know of some. Must be really difficult with a little kid - 11 year olds have a lot of attitude, but at least he understands properly what is going on. I am happy with watch and wait as an approach to ITP (was very uncomfortable with it at first though) but maybe its time to at least consider whether there are alternatives

Bests Wishes and thanks for the ideas and encouragement, Ali

this whole thread made me laugh... smothers day haha ... yeah its true though, your mom says " be careful you dont get shot" enough times... and you begin to think you really are going to get shot lol

this whole thread made me laugh... smothers day haha ... yeah its true though, your mom says " be careful you dont get shot" enough times... and you begin to think you really are going to get shot lol

I just read over oneups shoulder repeatedly until I figured out where she was chatting :laugh: and then I began my google stalking of mother :woohoo: lol

I don't know how she found it... probably google? ... lol

* speaking of, if anyone cares she hasn't switched over- she just started college in Jan , shes too buussyyyy lol ... unless she picked a mysterious new username * lol

Hi all,
If we can't rant and rave here then where can we. I have no-one that I can talk to about my worries, the obligatory husband yes but I'm the one that reads everything including seminars (how sad). Our consultant had to have urgent surgery so is going to be off for 4 months and although Zacs bloods weren't bad 68 he was going to let us have two monthly appointments but the new consultant will not hear of it so we are back to 4 weekly bloods. I have a good range of friends including doctors but even these ask me about it even my own gp asks me now. Its nice that people care but I feel so lonely and worry so much about how can I stop Zac doing all the ruff and tumble things that could cause him an internal bleed. He was diagnosed last June and I wonder if I will ever not live by blood counts. I was wondering if Dougie would wear dog tags, Zac wanted them but he is only 5 so I told him that when he is older he can have them, he has a sports bracelet at the moment. Ali was wondering if you knew of any discussion groups in North of England. Next blood count this Wedensday fingers crosssed for an increase we are on watch and wait.

Nadia x.

Ali,
Thanks for asking about Jordan and I too am fed up with ITP! Her doctors at first told us what it was and said to consider it a nusiance, but I think they thought she would be over and done with this by now. They always ask Jordan what her ideal life would be as they want to do what is necessary to try and keep it as normal as it could be. I have asked Jordan a few times about watch and wait approach but this is not an option for her and she does have a few issues with her period when her counts get really low so we treat. She responds to Pred and IVIG and prefers pred to going into the hospital for IVIG (no infusion room in our town for kids). Treatments usually last anywhere from 2-4 weeks until she needs another. She has lived with such an active lifestyle until this hit last April, that we really didn't know what to do for a while. Luckily, jr high school soccer just ended a month or so before this happened. I tried to keep her in a bubble through last summer but that just made us both miserable. She missed all the fun end of year activities of 8th grade graduation which included 3 trips to Disneyland that was to happen in one week at the end of May. That would have been a difficult week anyway, but I had every intention to let her do this as she earned one trip for CSF, one trip for orchestra, and one trip at the end of that week was for a dance competition for her outside competitive team. I think she was extra excited to go for CSF as this would have been the first time she would have gone without us tagging along.
Her doctors and the nurse at her high school have been wonderful. I have a letter from her doctors that I passed along to the nurse at her school and she relayed this to all of Jordan's teachers. So far this has been okay. Jordan does not want to talk about this, she just wants to be a normal high schooler. But she did write about her condition in two term papers this year. I cried when I read the one she turned into English. And I'm sure she really surprised her health teacher when she was asked to write about any health conditions she or anyone in her family had.
Her dance is now limited to just a school dance team. Her dance teacher and her teammates know about her condition and she does other streches and things when her counts are low. Dance seems like it would be relatively safe with ITP but she competed in all forms and some of the dances had alot of head shaking, floor rolls and lifts (she was 83 lbs last year and lifted in some of the dances). The team was going to let her just be on a few lyrical dances this year but she elected to sit out and hopefully be back the next year. Its now coming up on a year soon, we see her doctors next Thursday and they have hinted Rituxan. I am still undecided. Some days I think we should try and other days, I just worry too much. I guess I've ranted long enough now too but it is good to get it out to people who can relate. I think I've talked too much to my friends about it and really Jordan looks fine most of the time.

Karen
mom to Jordan
diagnosed April 2009

Caitlin's 3 year anniversary from being diagnosed is on Tuesday so I understand what you mean when you are fed up with ITP! I think it's time to have a discussion with dougie about what he wants to do. Sometimes treatment is good if it allows the to play without worries. I know Caitlin said that while she was on Nplate, she felt like she could breathe freely because she knew she didn't have to think twice everytime she did a flip. Without treatment, she is suffocating because all of us (family, friends, & teachers) are always watching her. If dougie feels the same way, maybe HE needs to share his feelings with the hematologist. Caitlin and her dr (& nurses) have a great relationship so they know the emotional impact this has on her. I gave them a picture of Caitlin doing a layout and they were amazed that she could do this. I explained that she's been able to do this for over 3 years and has been begging to learn how to do a full but I won't let the coaches teach her how. They asked me if it was because it was too dangerous or if it was bec of her ITP and I said ITP and Caitlin cut in saying "I'm tired of her telling me no...I want to learn something new". It is always good for the drs to hear the emotional standpoints because in reality, in the clinic of cancer and blood disorders, ITP is probably viewed as a last priority unless they are actively bleeding in front of them. Caitlin's dr is an ITP specialist and well-known so she has treated much worse cases, but I feel like she takes time to listen and I feel so blessedin that aspect. Sorry for the rambling,lol!

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