FED UP WITH ITP

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........

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

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

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

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:

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!

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

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.

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

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 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.

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

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.

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

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

hi ALI,there is always someone with more problems than us,this is true,but at the end of the day its all relative and what effects and hurts our children does the same to us,i know exactly how you feel . the heamo asked me last week if i was over it yet! i said im past that,now i just get angry,frustrated and all the rest,liam is not 5 yet so at the moment he doesnt get too frustrated,im sure when its time for him to want to play a contact sport he too will get frustrated. from what ive been reading in the past few weeks you seem to be doing an amazing job.keep you chin up,we are all there with you jenny