No Treatment??

I was just wondering who else on her is PRO no treatment??

I have NEVER had any treatment and i think its the best route to go down, as person who has grown up with ITP.
I dont think you should make a child try all the treatments, its just putting strain on your lives and theirs, and if they dont work its back to the starting point.

Take Care
Sarah x

I think sometimes it is necessary to at least try a treatment option especially if they show symptoms of low platelets other then just the low number. If your bleeding or brusing, it can be very dangerous especially if the child wants an active life where they like to play sports etc. I agree no treatments are good if your platelets are say at least over 20 and your not having any symptoms of bleeding.

There is also a bit of difference between 'Acute ITP" (usually diagnosed in children and generally goes away by itself) and "Chronic ITP" (usually diagnosed in adults and is chronic). The "About ITP" section here details it well. Treatment and the need for treatment can differ between the two types.
.

I know the difference between Acute ITP and Chronic ITP, i have had CHRONIC ITP for the last 9 years.
My platelets have ranged in the 2-5 mark for the last 2 years of my life, (before that they were at around 10) however in July of this year they just magically rose, and are now in the 220 mark.
I had constant brusing, fatigue and the rash that you can get, however my doctor still said no treatment, and i believe it was the best he could do.

At the beginning of me having ITP i wasn't allowed to go to school (for 2 months), eat sharp food i.e. crisps, wear a watch or a belt, and they said it was acute, however after 6 months, they said i had chronic ITP.
My mother is a nurse and when i was a child explained it to me very well and with great detail, now i use the internet.
ALL i ever read about treatments are, it hasnt worked again, my counts are low again, the splenectomy didn't work my counts are low AGAIN!. i just say why put yourself through it no matter what age you are?

take care
sarahx

I'm in remission now for over two years due to treatment. I was lucky, I wasn't actively bleeding, but my counts were sometimes in the teens. And when my counts were low I was also extremely fatigued, not able to function well. If I had bleeding I'd have no choice but to treat, and for me it was a quality of life decision.

Some here don't have any symptoms at low counts, it would be easier to not treat if that was the case. But it isn't the case for everyone.
Erica

Sarah that's wonderful your count rose on it's own and you are now in the normal range. Mine rose in the 400,000s once with no treatment but that didn't last long - I hope your high count will.

My explanation of remission is decent counts & no treatment. I've had ITP since mid-1989. Prednisone put me in a remission for about 9 years - now I have been in remission since late 2002 thanks to only one WinRho IV.

I'm not in any position to judge someone if they want to treat or they don't want to treat - I'm not walking in their shoes.

I understand what your saying Sarah, but i don't think it is very fair of you to criticize other people's personal decisions. It is a very personal decision that each person has to make on their own based on the advise of their doctors etc and while the no treatment option may been your decision and something that is working out well for you, other people may feel differently about it and it is not your place to judge whats right and wrong for everyone else.

Like Melinda said, your not walking in their shoes and don't know their history and what the reason behind their decision is. Sorry if it sounds like i am coming down hard on you, but i just don't think its fair of you to make comments like that especially when your only new here and don't know everyone here.

Whoa - time out - it's just a discussion. There are adults who choose not to treat for certain reasons and everyone is entitled to their choices. They discuss the "no treatment option" in the Parents section all the time, it can be discussed here too. Some people have to treat based on lifestyle, symptoms, etc, so the ITP road is different for everyone.

Thats all i was saying Sandi, is that she shouldn't judge someone's decision when she doesn't know the reason behind it. How she wrote it to me sounded a lot like she was judging the people who do need to treat. It is not so simple to say what Sarah said quote ''i just say why put yourself through it no matter what age you are?'' end quote.

I didn't mean to sound mean or nasty and i apologise if anyone has taken offence to it, especially Sarah because thats not what my intention was, i was just contributing to the 'discussion' as well.

Sarah
I don't wish to scare you and I do admire that you can remain strong in your conviction to no treatment.
But on rare occaisions ITP can cause bleeding into the brain. I wonder if you would be able to stay so strong in your conviction of no treatment if you were one of those rare people?

Though from how I read your post, it was your doctor that decided no treatment (Not you) and sometimes they do know what they are talking about. It depends on each individual circumstance. Would you have said no treatment if the count was down to 1 you had lots of bruising and the rash and never heard of ITP. Somehow I think you would have followed whatever the Heamo would have told you to do :-} as by the sounds of it is exactly what you have been doing! Rather than you yourself been saying no treatment from the very first occurance. I wonder - are you so brave when it comes to a headache? How soon do you take asprin or paracetamol? Do you follow through no treatment with every ailment - am interested to know?

My very first time of Idiopathic Thrombocytopenia Purpula they tried different treatments and each time I would rise from 1 to 2 or 3 if lucky but drop down again. Yes I had the bruising the rash and an enlarged spleen. I am fairly certain I wouldn't be here now if I had opted for no treatment :-}

take care
rhiannon

I wasnt going to comment, but needed to clarify something. It sounds like you have tried a treatment Sarah....you had a splenectomy and it didnt work. Thats really unfortunate. I am glad you are comfortable with not treating. Like another parent said, the reason we put our children through this is a personal decision and sometimes "quality of life" comes into play with our children. They want to be normal, not sitting on the sidelines while their friends play kickball or some other contact sport. My daughter was put in that situation and she hated it. She was also sent to the library in the beginning instead of recess. Sometimes parents are lucky enough to have a child who is old enough to express what they want. For my daughter, she wanted treatment and the drs agreed even though they really try hard to follow the no treatment approach. Honestly, many of our children could do whatever they want without treatment and still be just fine. But then we ve had parents who have lost their child to a brain hemmorhage because of contact sports. My daughter's dr has lost two. So, just for the peace of mind, no matter the costs, some parents will opt for treatment to keep their child's count high. At least, that describes me as a parent but i respect anyone who chooses whatever option for their child because there is no "one size fits all" when it comes to ITP.

I wasnt going to comment, but needed to clarify something. It sounds like you have tried a treatment Sarah....you had a splenectomy and it didnt work. Thats really unfortunate. I am glad you are comfortable with not treating. Like another parent said, the reason we put our children through this is a personal decision and sometimes "quality of life" comes into play with our children. They want to be normal, not sitting on the sidelines while their friends play kickball or some other contact sport. My daughter was put in that situation and she hated it. She was also sent to the library in the beginning instead of recess. Sometimes parents are lucky enough to have a child who is old enough to express what they want. For my daughter, she wanted treatment and the drs agreed even though they really try hard to follow the no treatment approach. Honestly, many of our children could do whatever they want without treatment and still be just fine. But then we ve had parents who have lost their child to a brain hemmorhage because of contact sports. My daughter's dr has lost two. So, just for the peace of mind, no matter the costs, some parents will opt for treatment to keep their child's count high. At least, that describes me as a parent but i respect anyone who chooses whatever option for their child because there is no "one size fits all" when it comes to ITP.

The 'question' of whether or not to treat was not really left up to us when our 14 year old daughter was hospitalized at 2K, having lost at least two units worth of blood from----her menstrual period, which just wouldn't stop! EVERYONE wanted to stop the bleeding---but no one would do the surgery required until her counts were higher. We/the doctors treated. She had IVIG and Premarin, and two units of whole blood, then finally, successful surgery.

As you indicate in your post, not all things work for all people--frankly, her response to the above was just barely adequate to permit surgery, and her counts fell again within two weeks. But hey, she was out of the hospital and not bleeding--because we went the treatment route! Then--oops, she tried Win-Rho, and it didn't work very well either. Splenectomy was out, as far as we were concerned, for as long as possible.

However, that wasn't enough for any of us, least of all my daughter, who over the next several months became a very worried young lady. ITP turned her world upside down--the things she loved to do, the things she PLANNED to do as far as career and recreational activities. We treated with steroids--these actually worked--to try to get her counts close to the normal range, so she wouldn't be afraid of being a girl! So she would agree to have a period every once in a while! And, having tried a third treatment, actually found one that this one worked well for her--important to know in an emergency, don't you think?

But always getting counts before doing what she wanted was such a bother--and a pain, and an expense! At 15, she was well on her way to hypochondria, and was plucking her leg hair with tweezers--can you say: "Anxiety much?" We consulted with a second medical group, and they mentioned Rituxan--which I had been reading about on this site.

Long story short, Rituxan has succeeded where many other treatments have failed. Her remission has been 7 years, 11 months. And Caitlin has made the most of it! She's a much better-adjusted young adult, has worked with the animals she adores (dolphins, manatees, wolves and dogs! Try that with the counts she usually had, somewhere south of 23K)!

For our part, we are so glad to have boldly gone where few others had gone before...and in return, to have reached a whole new universe of opportunity! So---to each his--or her--own! Ann, Caitlin's (23) Mom

Interesting discussion. As Sandi points out, watch and wait is an increasingly mainstream treatment for children anyway. I think that the differences of opinion here might be a cultural thing - people in the States mainly pay for insurance, therefore expect a "cure" if they get sick, whereas those of us in the UK who are dependent on the NHS accept what we can get? I don't know. Also, in the UK, I get the impression that haematologists treat the symptoms more than the count - I can't imagine someone over here getting hospitalised based solely on a count for example (someone is going to tell me they have been!)

I am a big fan of no treatment. I wasn't a year and a half ago when my son was first diagnosed and I might not be again the the future. But at the moment, it offers my son the most "normal" life with ITP he could have - very few hospital visits, little time off school, no potentially harmful drugs in his system, no side effects...... However, the one overwhelming thing that ITP has taught me as a parent is that you sometimes have to roll with the punches, so if the situation with my son changes in anyway, we would reconsider. I guess I am saying I think you are all right in your opinions!!!!

Ali

Incidentally, although Dougie now watches and waits with counts between 10 and 40, he also did it with counts between 1 and 20 for about 6 months - in fact, I remember his consultant getting annoyed with the local hospital once because they prescribed two weeks of steroids based solely on a count of 1.

I've just reread Rhiannon's post about headaches - our family of 6 generally doesn't even get through a packet of paracetemol in a year, so I guess you would describe us as generally following a no treatment line! And of course, you generally take the advice of doctors, but both my son and I would now be confident enough to say no to steroids if they were prescribed again solely based on a count - he had no side effects from them but still hated taking them!