Chances now???

So from day 1 I was told very likely children will be better within 6 months like 85-90%..than I think like 50% of that get better within a year...So I know that he can still get better anytime because I have heard that sooo much, but after a year what are the chances?? (starting to think treatment might be needed and I just do not wanna go there)!!!

Hi,

My 1 year old baby was diagnosed with ITP a month ago and this is the million dollar question I have. Are these percentages of recovery really true? A quick look at the posts in the forum or else where on the internet indicate otherwise, I.e., there are hardly any stories of full recovery and even lesser with no treatment at all. If the 80% recovery in 6 months is anywhere near true, then the only explanation I can think of is they havent posted the success stories on the net.

Hi Crystal.

Dougie's doctor (probably the best paediatric ITP specialist in the UK) says that the percentages are something like

First 6 months - 70-80%
Next 6 months - 25% of the remainder
Every subsequent year - 10% of the remainder

If you don't want to go down the treatment route, then don't - simple as! There isn't anything special about any particular anniversary which means that you need to change strategies. And to be honest, I can't imagine a little kid doing anything that would be so dangerous that they needed to raise their platelet level - although as children get older, more adventurous and less under your control, this might be a case for treating in the future. If your little boy has no active bleeding symptoms, then you are probably taking more risks with treatment than without. Kids can go a long way and do a lot of things with very few platelets - Dougie has done a load of things the last three years like scout camp, sports, paintball, adventure sports, climbing, etc.

Alison

Hi Alison,

It's such a big relief to see the stats again. I just hope all of our kids here get recovered in the first 6 months(or atleast have the levels to above 50(just a random safe number)).

Do kids(under 3) with ITP go to nuerserys? We are a bit confused as to when is a good time to send our kid to nursery. Initially we thought one of us wont work and be with the kid, then we thought this could take months or years (worst case) to cover, so there is no point in sacrificing entire career as it is unlikely to get jobs with really long breaks. We are currently thinking we will send to nursery, if the count goes atleast above 20, but preferably above 40, but the haunting question comes again, how long it might take to reach those numbers and what to do in the meantime.

Many Thanks.

Webber,

I would ask your consultant, but I can't see any reason to keep your child at home on the basis of counts alone (symptoms yes, but not counts). My son continued to go to school and take part in most PE with counts down to 1, certainly below 20 for the best part of 2 years. It is really important though to keep the schoolnursery very educated about restrictions and what to do, when to contact you etc.

As you say, it could (but hopefully won't) take years to get your child to those levels - are you really going to put their lives on hold until that point? And yours too!

Ali

Alison, I think you make a perfect point.

Only trouble we have is our daughter is just 1 year and she just started to walk/run around (although in all sorts of directions) and we have been like a shadow for her in the last 1 month and has'nt been out of sight for even a second (literally). She keeps falling quite a few times inspite of our best efforts.

Although the nursery staff can be explained of the situation, we are worried that the group of 1 year olds (including our one) at nursery would'nt have a clue about the restrictions and as a result my daughter can get hurt, either bumping onto something or someone accidentally hitting her. Given the platelet count is just above 10, our main concern at this stage is for her not to get hurt.

Not sure if I am making sense or may be I am overly worried.

Ali-- As always I agree with you!! I do not want to treat, I do start to feel guilty and feel at this point like I am just waiting for something to happen. Since IVIG doesn't work it bothers me even more sitting this low still because I always question what if. I think I would feel better if something works so if needed in a hurry we could atleast have a plan.

Oh it bothers me to no end..The night we arrived at childrens hospital we were still in ER waiting for a bed. His Dr came in to talk to us, one of the very first things she said is I see he had shots just about 4 weeks ago, this is most likely the cause....So it is always in my head. I tried to protect my child and look what happens. That only makes me even more afraid of treatment!


He is now 2 and a half, and thinks he can do superman off the back of the couch, climb the 5 foot tall entertainment center, climb up on computer desk than when you come to get him off he thinks it funny to jump...I have gutted most of my house, but now he can climb these big things and I am always so afraid!! I also have a 1 year old so I try to keep my eyes on him at all times but my baby does need things. Changing a diaper takes about a minute(?) but you wouldn't believe how much trouble a 2 year old can cause in that minute!!!

Webber I have heard it said many times on here that the acute cases usually don't stick around. I have seen in my time here a couple of parents come back and check in which I always personally love because it gives me hope!! The ones that are here usually need support though so we don't hear the positive as much as we would like...but have faith it DOES happen!!

My baby was also 1 (17 months) so I know exactly how you feel. I actually didn't even go to my family christmas party because he was 0-3k at the time and I was afraid of other kids!! I do think it would be fine to send her to nursery like Ali said as longs they fully understand what is going on, and does she wear a helmet by chance? It is something you may want to consider if not. Best of luck!!

Crystal, thanks for the words of hope.

She doesn't wear a helmet, I think we asked our haematologist about helmet and she said " I haven't recommended a helmet to anyone in my 20 years is service".

I will keep an eye on the counts for the next couple of weeks to see if they go slightly higher to a safe enough number for nurseries.

The standard answer I get from our peadiatrician / haematologist about length of recovery is " it greatly varies from child to child so can't say "

Its not worth worrying about something that hasn't happened yet - you will worry yourself into an early grave! It is however worth preparing for it. So what I do is to risk assess things, take precautions that I can reasonably take, and then just get on with life as normally as possible.

In your situation Crystal, I think I might be asking the Dr what his emergency plan is for the time that your little boy does fall off a climbing frame or something - knowing that there is a plan might help you to worry less.

Webber, its worth taking some basic precautions like padding corners and door handles, but then try not to let it affect your life or your daughter's too much. Look for symptoms - worrying bleeding - and don't concentrate on numbers. Chances are she will recover quite quickly anyway and you can put this all behind you. If not, it really doesn't have to be the end of life as we know it (Jim)!

Good luck, Ali

My daughter who is 2 now was diagnosed with ITP a year ago when she was 1. I was told that most kids recover in 18 months by our hematologist. But I don't know if I believe in the work 'recover', I'll just stick to remission. My daughter is not in remission yet. She's not a bleeder and has never been treated. yes when she was younger she feel a lot had a ton of bruises on her legs, yes had a lot of petechiea (sp?) but eventually the bruising was less and less. Her counts have ranged from 10-15 for some time dropped down to under 10 some time, agin ranged from above 10 to 20, and then from 20-25. On Tues we went in for a CBC her count was at 51 with no treatment. I'm hoping it doesn't go down. But in kids I really hope to see it going away. I wouldn't recommend treatment because from what my hema told us if you treat your counts go up high fast and then they come down fast and that's what causes the 'bleeding'. So if treating is not necessary please do not treat.

Hi Mia thank you. My Son has had it since he was 1, he has had it for 15 months now, He was treated ALOT at first. He had a count of less than 1 (wahtever that means...0) He was in the hospital for 3 weeks straight nothing worked, after BMB they released him and we stopped treating. (except pred when mouth real bad).

Now if we were to treat it would be 6mp or rituxan I am terrified of both!! I fight myself always wondering if I am being selfish because of my fear. He was 0-3 from July-April since May he has been hanging around 10 (9-11, once 13..same thing I know!!) He has improved alot from 3-9, he still gets lots of bruises and petchaie but nothing like first 10 months...

Your info is very useful 1 I have never heard 18 months, 2 I was not aware after treatment bleeding could be worse.

I like ITP support association (UK) on facebook, and yesterday I saw the cutest little boy who was also 2 who has recovered (or remission) on his own after they decided not to treat...He had it for 18 months..It gave me so much hope!! And I am so happy for him (total stranger but still I love seeing kids recover, adults also)

I think you should all ignore the stats because each child is different. I'm an adult which the stats claim would be chronic. After 8 years of ITP, I've now had a 7 year remission.

I've been around here forever and I've seen many children achieve remission at any time after diagnosis. It didn't matter how long they had been diagnosed. If you focus too much on the 6 month mark or the 12 month mark, you're going to set yourself up for disappointment. You could hit 12 months and suddenly see a remission after 15 months. That hope is always there. Focus on the day at hand and what needs to be done today. Forget where you are in this time wise. Remember too that it is possible that your child had lower than normal counts before the day of diagnosis and you just didn't know it. You could be farther into this than you think which throws your calendar off completely.

Forget dates, forget counts. Focus on symptoms and extra hugs. One day at a time!

The more I read about ITP, the more I find the unpredictable nature of it. Some needing treatment, some on wait&watch for similar counts/symptoms.

For those that recover (either with or without treatment), is there an expected pattern of the count raises? Our consultant was suggesting it is usually like a wave, ie., ups and downs and one should hope to see only small raises every week to fortnight, for example 10s , 20s, 30s etc.,

Just wanted to check what others experience here is whose kids have either partially or fully recovered.

Thanks

I don't have any experience with recovery, but we haven't done a wave yet. For 10 months my son was below 5 rather he went twice a week or every other week his count was 0-3, end of April he was 3, May he was 9 he held from 9-11 since May. This past count Oct.8 he was 19 but he has a cold so we haven't celebrated yet. I do hope he hangs here and continues to go up, but he has been very consistant with his counts.

It would be nice if small raises are good, I just hope he starts going ALITTLE faster, atleast until we hit 30-50 I will be very happy if he is finally going to hang out at 20 though!

I don't think there is a guaranteed pattern like that - some kids go up and down again, some go back up as quickly as they went down.

To give you all hope though, after 18 months of 5-15 counts, (3 1/2 years of counts mostly below 40) Dougie seems to have got better - no treatment, no special diets, just got platelets at the moment. His count in August was 12, then 41 in September. I haven't bothered getting his count done since then, but he has absolutely no symptoms.

It might not last of course, but for now, I am enjoying the reduced stress, and Dougie is enjoying football!

Ali

Just a thought.....If you are not going to treat based on numbers, then don't bother getting counts all the time. You just get completely hung up on the number, and in reality, most of them are pretty much variations on a theme anyway. Numbers, and trying to see patterns in them will drive you mad! Honestly, you will know when your child needs treatment based on symptoms, and you will probably know when they recover too. :laugh:

I am already crazy!! :silly: I only do counts once a month. My goal has been atleast 20 yes I would LOVE higher, but 20 seems comfortable. He was in hospital 3 weeks, 20 was number he was suppose to be released at, on ITP support it says over 20 risks reduce greatly, and I even read above 20 it is unlikely to have dangerous bleeding in a car accident (of coarse within reason, anyone can bleed) AND here in US they big on treating but alot don't treat unless under 20..So 20 would just make me feel alot better

I am not disagreeing woth you, you have great advice and you have helped me in the past 15 months more than you know!!!

It was more directed at newbies than you Crystal - you definitely know what you are doing!

When Dougie was in that range, we used to go quarterly. Its only this year he's been once a month, and thats seemed like way too often for me. Dougie was supposed to be back at the hospital next week, but we are on holiday in Spain then, so I've decided to stretch it out until the end of November. You could try suggesting quarterly to your doctor maybe?

And yes, 20 seems like a safe number - the doctor lets Dougie play competitive soccer above that number. He prefers 30, but he reckons 20 is safe for most things.

Yes, 20 is anyday a great count to have, as all the Information out there seems to indicate it as a safe zone from serious bleeding or internal bleeding.

Since we got only 6 counts(6 weeks) done so far we are still conscious of not only the count but to also see if she is improving and how slowly or quickly. I think very soon we might be asked to visit less frequently but I hope the consultant arranges regular visits for atleast the first 6 months as that seems to be another benchmark for making a destinction between acute and chronic diagnosis , although I understand anyone has the chance of recovering after any length of time .

These 6 counts have definitely been like a wave for us currently hovering in mid 20s and was below 10 on a couple of ocassions. I hope all of us here have a healthy recovery soon

Well he got another count, and he was 21, so looks like he might finally be hanging out around 20. That would be amazing. 15 months ago 20 would of made me sad now 20 I do a happy dance! For now I don't have to fight myself everyday wondering if I should try a treatment. Small and very very slow but atleasat I know he can make small jumps on his own.

Yeay! Thats 2/3rds of a party. Now just relax and enjoy yourselves for a few weeks until the next one.

I am like you. i started off wanting Dougie to have normal counts again, but now I am happy as Larry if he just tips 20.

Yes, have hope! Don't stop believing!!! Recovery does happen to children and it happened for our son. It has been years since I have visited the PDSA site (it had just been recently created back then . When I browsed this thread, I immediately had to make a post after reading about the same fears and concerns from others, that we had. In 1998, our son was diagnosed with ITP at 4 years old. He is now 18 years old and hasn't had a recurrence since he recovered (which took a little over a year). At time of diagnosis his platelets were at a 2. A lot of time has passed since our son's diagnosis, but please feel free to ask any questions and I'll be happy to provide any information about our experience! Our family made it through this scary and unfortunate time, and you will too!!

~Kyle's Mom

Hi Crystal,

It's great to hear that your kid passed the 20 mark. I can understand how big a relief it is, celebrate !!

Kyle's mom, thanks for posting after all these years. It's such a relief and gives us all hope to hear success stories.

As expected my consultant for the first time wanted to see us in 2 weeks instead of 1 week. Still early days, but atleast now I am confident there is hope

Thanks

Thanks everyone!! I am very happy he finally made it here. I try to take it day by day and enjoy it, but I can't help wondering did he drop? Is he gonna? I am doing very good focusing on today and being happy, but it is still always there!

Kyles mom thank you very much for visiting, we love and at times need these wonderful stories. I am very happy this is a thing of the past for your son!!