Just typed out a whole thread and lost it! GRRR! Don't have the time to retype it all.
21 month son, Finn, was diagnosed three weeks ago. His platelet levels are less than 1000 (they were undetectable) and they are not treating him unless there is some sort of active bleeding, etc.
I am nervous about a support group because I was sort of calming down about all of this until I read some of the threads and have seen how many of your children are being treated. So now I am a bit worried...
Basically I want to know if I will be able to see a visible difference in Finn when his levels are improving. It's been 2 weeks since his last blood test which was the same as the first and he is still covered in bruises. WE got insurance two days after he was diagnosed with this so we have to pay for EVERYTHING for 12 months as it is considered pre-exisiting but our dr and pediatric hemotologist have assured me that there is no need for treatment and the longer i wait for a blood test the better as there is more of a chance of seeing good numbers.
Also do I need to worry about chicken pox and keep finn away from public places - i read something about this but it mentioned something about steroids?
What we have is now & right now we have each other
Thank you received: 13
I'm no expert but for myself, I notice a lot of brusing when my platelets are low, so when you start to notice them fading and going away, usually they have gone back up a bit.
Prednisone is an immunosuppressant, so when your on it, you are at more of a risk of developing an infection. If he is not on any medication at the moment, then there shouldn't be much worry about keeping him away from public places.
I'm not in any pain when my counts are low, i do get fatigued more easily when they are low, but i don't get pain.
I know it is scary and can be overwhelming at first trying to deal with thats going on, but i find this support group a big help because i am able to talk to other members who are going through the same thing as me and it's good to know all the treatments that are avilable as your doctor might not mention them all to you.
Hope everything goes well and that they go back up themselves. A lot of the time in kids, the ITP resolves itself
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.
Its very unusual for kids to get treated in the UK unless they have significant bleeding (something more than bruising and petechiae). He is unlikely to be in pain, although my son says that the bruises sometimes hurt a bit. So my advice would be to keep calm, remain watchful and careful, keep everything crossed, and wait for an improvement! All the treatments have some sort of risks or side-effects, so if you can manage without, why take that risk, especially as most cases of ITP in children are quite shortlived and resolve themselves?
If however, you are worried about anything, take him to the doctor or the hospital - no point in taking risks unnecessarily or worrying yourself to death. It must be really difficult with a toddler - at least I can tell my son WHY he shouldn't be climbing or playing rough and know that he understands (whether he takes any notice is another issue entirely tho!! LOL). There is another poster (dbishop-Deanna) who is doing wait and watch with her pre-schooler, so she might have some good advice for you.
When i first came to this forum i felt the same way. But now I don't know what I would do without being able to talk to those who are going through the same thing. I know it's scary to read about all the different treatments but the realitly with ITP is that everyone responds to it differently.
My little guy is almost 2 and a half and this is his second bout with ITP. The first time it was short lived and he was treated with IVIG once and for over a year he had high counts. In nov 09 i noticed the unusual bruising again and knew that it was back. This time is a bit more difficult because emotionally because his counts go up and down. His last cbc was two weeks ago and his counts were at 129,000 but right now he has a lot of bruising so i know that they have dropped to low numbers. We too are doing the watch and wait approach and so far we have seen some very good numbers and some not so good numbers. I agree with Ali that the treatments themselves can be very tough on the kids, when Devyn got the IVIG infusion, my heart broke and i don't ever want to see him have to go through that again but the reality is that he may have to one day. Through out this past few months Devyn has still been his happy go lucky full of energy self. so it's hard to say how ITP really makes them feel. But as many parents have said on here the biggest complaint is that they feel tired. So i'm sure he is not in any pain.
My biggest words of advice is to go with your heart on this one, if your not comfortable with te wait and watch approach then definitly talk to your Dr. You will have moments where the worry is overwhelming and that is when i find this forum is the most help to me. You will gaet lots of great advice from the parents on here.
Where do you live? My friend is a doc here in MI, and she was saying that often if kids get some sort of serious illness, they can apply for state insurance and it will be retroactive...
C was diagnosed at 3.5 with a count of 11k...her hemo admitted her that day and she got IVIG. Part is what the doctors say, part of it is what you're comfortable with. She was old enough to get scrapped/bruised/do crazy stuff, but not old enough to understand things weren't safe yet...so for me, treating her was a good option. If she had a 0 count I think I'd wrap her in bubble wrap and keep her in bed all day =) (Ok, to be honest, I wanted to do that at a 40k count, too!) She was also starting preschool, so i felt safer with her at a higher count.
And...She was also a little clutz, which didn't help! (Seriously, after being diagnosed...girl walked into the corner leading to our kitchen and ended up with a bruise on her face. The wall had been there since she was BORN!)
It's been 6 weeks since Finn was diagnosed, two weeks since his last blood test which came back again as ZERO. I haven't been pushing the blood tests as he just bleeds everywhere, goes through band aid after bandaid (they had to change it 4 times and I had to change it myself as well!), hates going to the DRs and it is so discouraging to not see any improvement so it suits me fine to wait awhile. I was wondering about this though - the blood tests are just happening at our pedatrician's office - I asked him if I could go somewhere else for a more accurate reading and he said that the machine that they use is the same as the hospital. Everyone else on here seems to have such accurate readings that I am wondering how my child can just be a zero. Apart from the worry and stress things have been ok since the intial diagnosis and he looks SO much better. Could he suddenly be getting better??? He was bruising every day and now it seems like he has hardly any by comparison except a few petechiae here and there. Today he cuts his face very slightly on the dry grass outside and it hardly bled but as my husband pointed out it wasn't very deep but still it hardly bled. I must say I am starting to hope!
When Devyn was first diagnoised he had a platelet count of 10,000....they kept on testing to see if it was a mistake but it still came back 10,000 or lower, after 1 treatment of IVIG he went into remission for over a year..so yes it is very possible that he could be getting better, but if it's not quick please don't get your hopes up!! Unfortunantly Devyn came out of remmission but i still have hope that one day ITP will go away again!! You sound like you are handleing it very well so that is a great positive!! Keep us poasted
You are so admirably laid back. I try very hard to keep my worry under control and succeed most of the time - however, on the occasions when worry gets the upper hand, I need to adopt your outlook I think!
It is possible that Finn's ITP is resolving itself - I seem to remember that the doctor told us that 6 weeks was quite a common recovery period for kids. I reallly hope that this is the case for you. Also the longer that kids have ITP, the better their bodies get at dealing with the deficit in platelets - so their symptoms get better with the same number of platelets.
I notice a difference in counts at the two hospitals that my son goes to - I don't know whether this is just coincidence or whether it is real, but Manchester always seems to be higher than Crewe for some reason. I do also remember our local hospital telling me that any count under 20 was not particularly accurate anyway - maybe thats why they do a manual count?
When is Finn's next blood test? I will be thinking of you and hoping for a good result.
I never come on here because of being busy and never getting a notification when someone has replied - sorry and thanks for your comments.
I definitely wasn't laid back to start with but the Pediatric hematologist's attitude was so laid back and now that two months have passed without incident I have been feeling ok about it all. Until yesterday....I took Finn in to be tested hoping for better results because a few things have happened recently to make me suspect that he is getting better such as the occasional bump on the head that is only a normal looking bruise and not the huge purple goose eggs that they would have been a month ago. He bit his lip and it hardly bled, far fewer petechiae and he looks normal and not totally beaten up. Not to mention that after the blood test he only needed to have his band-aid changed one time (last time it got changed 4 or 5 times) and it only bled for just over 5 minutes (last 4 blood tests it bled for 30!)
The count came back as a 1 which I thought was at least something but the Dr said the machine has a margin of error of plus or minus 10,000 so doesn't that mean that it could have improved at least by a few thousand??? The Dr checked Finn over and there are hardly any bruises at the moment but he called the hematology dept to touch base with them and spoke to a different Dr who wants Finn to come in for IVIG on Good Friday. What a rude awakening! I have read up on the treatment and it sounds horrific and completely unnecessary at this point. I think I would have been more willing to do this two months ago when he was first diagnosed and I was petrified of spontaneous bleeding but not now that he seems to me to be improving. Do any of you have an opinion on this? I don't inderstand the sudden change in tactics. Have any of you ever refused treatment for your child? What is the likelihood that one treatment is enough? IF we are able to keep him out fo harm's way for the most part what are the possible advantages of going ahead? Thanks!
Sorry about the count - must have been really disappointing. Our doctor said that there wasn't much difference in any number under 10K as well. If Finn was seen by my son's doctor (paediatric haeomotologist) then I suspect that he wouldn't treat him - but I think UK doctors have different ideas in general to those in the States. If it was me I would want to be asking the following
- if he's been ok until now with that count, what has changed. The count is still the same essentially so why do they think that he needs to be treated now if not before
- if he needs to be treated now, how come they are waiting until next Friday
- why IvIG
- are there alternatives - for example steroids which are cheaper, as effective if they work and possibly a less traumatic and risky experience (IvIG is a blood product with all the risks of that, plus it is infused, so you can get reactions to that)
Can't tell you the answer, but I hope that you end up with a way forward that you are happy with. And that Finn recovers his platelets soon!!
Thanks, Ali, for replying. I am a dual citizen - British and American and we moved from living 10 years in the UK to the USA 18 months ago so I feel comfort in knowing that they wouldn't treat him unless necessary. Really missing the NHS at the mo with all of this pre-existing condition malarky!
As for Finn, all of the questions you asked are excellent - I asked the first two but will definitely keep the others in mind if we are faced with the possiblity of treatment if/when we meet with the specialists. To get a different opinion I called the hematogist we had originally spoke to (it was his colleague that wanted him to be seen). He put me at ease because he said that based on the fact that Finn seems to be improving, less bruising and petechiae, hasn't had any spontaneous bleeds, etc feels that we can wait for a few more months before under going any treatment. He really does seem to be getting better so why aren't the CBC's showing that? Yesterday he walked into a table really hard and I was sure there would be a big purple goose egg on his forehead but there was hardly anything! How can that be? I think someone said something about the body compensating/adapting?
As a side note, before this happened we were hoping for a trip to the UK to see family before Finn turns two in May - is flying completely out of the question????
Ask the doctor when you see him. We went to Spain with Dougie in the Autumn when his count was really low - under 10 - and the doctors only concern was that we went somewhere with a good hospital and had good insurance. He was fine although I did spend a week worrying about being picked up by Spanish social services for child abuse, becuase he was soooo bruised that week. However, the UK to Spain isn't a long flight like from the US so I don't know. Maybe they could treat him with steroids first to see if that brings his count up to a reasonable level to fly, Thats what our doctor suggested initially, but then he said he would be ok anyway. I would have thought it might be a good idea to see what happens with steroids anyway, because if you do get into the situation where Finn needs to be treated because of an injury or something, it would be nice to know whether or not steroids work for him (they don't for some kids). It might be worth asking about the possibility of treatment so that Finn can fly.
Poor Finn and poor you - its a long time to go on with very few improvements. Its only since Dougie got ITP that I have really appreciated the NHS. Its been so good - there when he's needed it but not pressing treatment on us or anything. He's got a brilliant paediatric haemotologist at Manchester Children's Hospital who I trust a lot. He's always been very happy not to treat as it is his preferred approach - even when Dougie had counts of 1-2K.
Keep your hope anyway - kids do suddenly improve counts. And if you and Finn aren't panicking about it, thats half the battle anyway.
Just wanted to thank everyone who replied to my thread. Finn's last CBC three months to the day of diagnosis was 59,000 platelets compared to 0 or 1 a month previous so I am over the moon! No more bruising out of serious danger!!!! My GP seems to think that this means he is completely recovered although I know that hasn't been the case for some of you out there who have had lower counts again. How common is that? Should I get excited or be prepared for it to happen again? THANKS AGAIN! Sarah
The doctor Dougie sees at Manchester reckons that for most kids, once they start going up, they generally keep doing so. I REALLY hope that this is the case for Finn. My advice - enjoy his current count, and hope for, but don't expect better things to come....
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