I agree - the whole ITP thing gets a little "old" after a while. Zach has been dealing with this since he was 2 years old and he is 17 now. It's been 15 years for us, with a brief remission when he was around 6. We have been lucky in that his counts usually stay around 75k with some dips down to the 30's; but he hasn't needed treatment since the early days, with the exception of prednisone for a couple months when he was in Grade 5. He is very active in sports and in the beginning it was scary. He plays goalie for his high school hockey team and in his PE classes, for him it's all or nothing. When I was working at his school, there was more than a few times I had to go and help him stop a nosebleed during class! But, like you all say, they hate being singled out, being different. Not being able to do what he loves, would probably also lead to depression, and since he was also diagnosed with Ulcerative Colitis when he was 13 I think he has enough to deal with! What really scares me is when he goes away to University, which will be in 1 1/2 years. At least at home I can say it's time for bloodwork; when it's up to him, not sure how often that will happen. And I can see him going to play a pickup football game with friends, not really thinking about where his count is at. Oh well, I guess we will worry about this when the time comes. Anyway, that's my rant for the day...

Shelly

Rosa - I'm with you on seeking more than the general ITP and pregnancy publications and broad generalizations. Although I like that they are encouraging and positive, I want to know if I would be in the small percentage that are complicated and pregnancy goes really bad. I've done the searching (the old forum is great for this but you ahve to take the time to dig) and still feel pretty positive that pregnancy is very possible with ITP.

Here's the most comprehensive study I've found. You can also look for the references:
bloodjournal.hematologylibrary.org/cgi/reprint/102/13/4306

This is one of stories that really struck me. It's basically exactly what I fear but at least we know someone got through it:
discuss.pdsa.org/topic.asp?TOPIC_ID=25728&SearchTerms=CSection

good luck

So Sam sorry to hear that you are having such a hard time. Your last paragraph there sounds like you might be getting depressed. You might try finding a release for your anger. We can all relate to feeling angry about losing time to this very annoying condition. But it seriously should not stop you from caring how you look or going out.

Long as you are avoiding juggling chainsaws or large knives going out might be helpful to your well being. If you have the energy to go i would be out having a good time.
Gotta live each day to its fullest. Seriously while this ITP thing is time consuming & very annoying if you let it take over your life it will.

Many of us here have multiple conditions and still live pretty full lives...

So you are saying that a low count can cause headaches,aching bones and joints and tiredness?My daughters are at 43 now and that is how she is feeling she is 28.She was dx with IPT when she was preg. with her son 8 years ago.

:S My count today is 41, almost back to 19, which is where it was on the day prior to surgery, before this recent wild ride began :silly: :woohoo: I am SO exhausted, and feel like my platelets have dropped even more since the test at lunchtime. Platelet headache, aching bones etc. I have another week with hospital appointments every day :S

Vanessa.

Does anyone have any experience of small (1/4 inch ish) bruises on arms and legs that seem to be symmetrical? There are not loads but enough for me to worry.
The background is that my daughter was diagnosed at 1 1/2 with ITP with a count of 10. It went up and down over the next year with no treatment and now seems to be in remission. Emily is now five. Ever since her diagnosis we have noticed terrible mood swings but could never get a medical person to understand. She still seems to me troubled by this but they no longer do blood tests as she is in remission and it was always very very traumatic for her. The latest down seems quite bad. She was absolutely great after christmas. A normal happy child. Full of energy. Funny and coped well with everything. All of a sudden at the end of last week she is crying at absolutely everything. She is grumpy and tired. She has shadows under her eyes and is just so different to before. This keeps happening but if I take her to the Dr they only see a child that is overall well and thriving and in a 5min appointment don't see what we have to live with that can really affect the whole family. I have given up with the Dr's trying to understand as I feel they just think I am making it up! I have noticed before when she is on a down she gets these small bruises but to be honest I have never really noticed if they were symmetrical. They are this time. She has no purpurra or pettichia and the bruises are not sore.
Does anyone else have any experience of this type of thing? I am at my wits end. When she is on a good spell I forget how awful it is when she is down.
Thanks so much.
Best wishes to you all, Fiona

Hi Samantha,

I have been dealing with ITP for almost all my life. I was diagnosed with it when i was about 5 or 6 years old, i'm just about to start Nplate, hopefully this friday if my platelets are low enough lol. They have to be under 30 for me to start it and last week they were 36. I'd be happy to chat to you through email, my email address is in my profile under the about me section if you want to send me an email.

i live in los angeles , where do you live?

Hello all! My name is Samantha, and I'm 26. I was diagnosed in October, after I went to the ER with a platelet count of 1,000. Since then I've been in the hospital 3 times and had 5 transfusions. I'm currently on NPlate, which (usually) works. My counts go way up, and then way down. A few weeks ago I was at 400,000, and then yesterday I went to the hospital with a count of 3,000 for another transfusion.

Basically, I'm looking for some people who would like to talk back and forth for support, mainly by email. I've discovered that, although I have not been sick for long, my own friends are busy with their own lives and have stopped being overly concerned. It's also difficult to connect with people who don't know exactly what you're going through. Even when people are sympathetic to me, I am dissatisfied with their meager advice. I feel that I would benefit greatly from making some new friends!

I feel like a loser sometimes, because even when my counts are high I'm not confident enough to go out and enjoy life. Most days, I make little to no effort towards my appearance because I feel that it doesn't matter anymore. I've stopped going out on the weekends because I'm afraid to drink, and I get irritated easily with people who complain about mundane things. I want to slap them, and tell them my story to remind them how lucky they are. My patience is running low!

If there's anyone who would like to be my modern-day pen pal, please contact me!

Love and platelets to all!

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