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Watch and Wait - what does it mean? 5 years 5 months ago #54301

  • alisonp
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I've thought about writing this for ages, because the term comes up all the time, and because it seems to mean different things to different haematologists.

Watching and waiting is widely used for children and increasingly for adults in Europe. Most kids in the UK do not get treated for low platelets. Watching and waiting is also recommended in the international consensus report. However, I see kids on this site and on the Facebook pages getting really intensively treated all the time, so clearly not all Drs are listening :P

For my son's Dr, watch and wait means no treatment unless there is significant bleeding, and making decisions based on symptoms rather than counts. By significant bleeding he doesn't mean bruising, no matter how scary it looks or petechiae. Significant bleeding would include symptoms like nosebleeds that lasted for longer than 20 minutes, blood blisters in the mouth, gum bleeding, blood in urine or poo etc. At this point, he would consider treatment to stop the bleeding - this could be a short course of steroids, IVIG (both of which raise platelet levels, or tranexamic acid (which does nothing for platelet levels but helps clots to stick).

For my son's Dr anyway, watch and wait doesn't mean getting counts all the time and treating when you get to a certain number - I've seen a number of people say that they watch and wait until a count of 10 or below for example. There is no lower limit on the approach. My son has had counts of 1 and 2 without treatment because his symptoms did not warrant it. Also, if you are not going to treat based on a number, then there is no point in getting regular counts. My son (who until recently had six years of counts under 20) has a regular six monthly check up with his haematologist and doesn't get counts in between.

Watching and waiting takes a certain amount of courage for parents, and you worry a lot until you have the experience of everything being fine. But I really like it as an approach. My son has taken very few drugs over the past 7 years, so he has avoided the risks and side effects associated with those. He hasn't had his life and schooling disrupted by constant hospital visits. His veins aren't wrecked by constant blood tests. And most of all, he thinks he's normal. He's not scared and worried, his condition hasn't been constantly medicalised (is that even a word?), he doesn't think he's ill......he just thinks he's got low platelets.

Of course, ITP can be a very serious and sometimes life-threatening condition and it needs treating seriously. But for the vast majority of kids, it can be a relatively benign condition they can live with. So I would urge the parents of the newly diagnosed to at least ask about watching and waiting and not treating as an approach. Non-treatment can be as valid a treatment as any other.

Ali
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Watch and Wait - what does it mean? 5 years 5 months ago #54307

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Nice post, Ali. :)

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Watch and Wait - what does it mean? 5 years 5 months ago #54338

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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Yes, THANK YOU Ali!

I want to add - this should apply to adults as well, it might take a bit to not "worry" but if you treat symptoms then why fret about the count (unless necassary for surgery, medical procedure, etc...) As we learn about our own experience with ITP we should all be able to find our comfort zone.
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Watch and Wait - what does it mean? 4 months 3 weeks ago #71254

  • DomsmomONE
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I can understand what you are saying, however, in my son's case the hematologist wanted to watch and wait. And we did for 6 months, but after 6 months of steadily decreasing platelet counts, even to a critical level, I had enough. I demanded that they do something other than just watch and start figuring it out....and hematology did, it turns out my son has a primary immune deficiency disorder called CVID, which was causing his ITP. Now he is on weekly infusions and even though he still has ITP, his levels aren't critical anymore.
Watching and waiting might be fine for some, but don't you want the doctors to try and find a cause? Had my son's CVID not manifested as chronic, severe ITP, it could have been many more years before we even knew of his Primary immune deficiency disorder bc he isn't your standard CVID patient. Babies born with CVID are usually sickly children... not my son, my son was always healthy... The ITP got his PI diagnosis but only because I demanded that the doctors do something other than just watch and wait.

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Watch and Wait - what does it mean? 4 months 3 weeks ago #71257

  • momto3boys
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I can understand what you are saying, however, in my son's case the hematologist wanted to watch and wait. And we did for 6 months, but after 6 months of steadily decreasing platelet counts, even to a critical level, I had enough. I demanded that they do something other than just watch and start figuring it out....and hematology did, it turns out my son has a primary immune deficiency disorder called CVID, which was causing his ITP. Now he is on weekly infusions and even though he still has ITP, his levels aren't critical anymore.
Watching and waiting might be fine for some, but don't you want the doctors to try and find a cause? Had my son's CVID not manifested as chronic, severe ITP, it could have been many more years before we even knew of his Primary immune deficiency disorder bc he isn't your standard CVID patient. Babies born with CVID are usually sickly children... not my son, my son was always healthy... The ITP got his PI diagnosis but only because I demanded that the doctors do something other than just watch and wait.


I'm happy to hear that in your case you were able to figure something out. There are most definitely times when thrombocytopenia is a secondary manifestation of a primary condition, as it was for your son. That is why they often call an ITP diagnosis "one of exclusion," which means that they have tested and ruled out other conditions that may be triggering thrombocytopenia.

That said, there are lots of us out here who really just do have ITP with no underlying secondary condition. I've had ITP since I was 8 years old and I'm now in my
40s! Let me tell you, they have tested me for everything and there is no other "answer" or "thing to treat" than just the ITP. Of course I "want the doctors to try and find a cause," but right now, science and medicine haven't reached a point to customize ITP treatments (or many other autoimmune condition treatments) to all of the potential triggers/mechanisms specific to each particular patient. I just thought I'd jump in there and state that "watch and wait" is a perfectly valid option for patients who have eliminated other, secondary conditions as contributors and really just have ITP. My counts run low enough that I require treatment, but I would sure LOVE to be in a high enough range with my platelets where I could just watch and wait!

As with anything, being an educated patient and an advocate for what you want with your doctor is the first step. Your advocacy for your child led the doctors to investigate further and find an answer for him. Best of luck to your son with his treatments.

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Watch and Wait - what does it mean? 1 month 3 weeks ago #71774

  • DawnS.
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Hi! I know your post is 5 years old but many you can help. My daughter who is 8 years old has been dealing with acute itp for 3 months....she has been on 4 rounds of steroids and 1 ivig treatment for drops below 10,000. I am at the point where I honestly don't understand what is worse - low patelets or the medications. It has been awful. For watching and waiting, do you let your child go about their normal day? Do you keep them sedentary? Do you let them do normal kid things like play dates, recess, etc?

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