Anyone else have a child with ITP and if so, what is your experience?

[dmyslins]

My son is 5 and has ITP since he was approx 18m old. He currently is holding around 40K. He cries and gets angry over every little thing.

We are happy with his count relative to risk but he struggles daily just to make it through the afternoon.

[malc]

Hi,

Very sorry to hear about your son. Is it tiredness that is causing him to struggle? Our son is also 5 and was diagnosed when he was 2 and a half. His count is consistently below 10. However we are so far lucky that he does not have bleeding episodes or seem to suffer overly in other ways. He does of course get tired and is generally very grouchy in the afternoons before supper but we have put this down to normal behaviour as his cousins also seem to be very similar! He has now started full days at school and this has of course meant it is worse at the moment. We do try and limit his more adventurous activities and explain to him that he cannot play football with the older boys as yet (one boy having received a large blow to the back of his head with a football only this week) and he seems to understand, but I can imagine this will get worse as he gets older and asks why he can't join in. Happy to discuss further if you want to. Let me know if you have any specific questions.

Good luck!

Malcolm

[AnthonyHeard Administrator ITP Support Association]

Hello dmyslins and welcome to the group. I was diagnosed at the ripe old age of 46 and have no direct experience of ITP in young children except to say that in working with the ITP Support Association as a volunteer I have accumulated some information which may help. In discussions with various specialists in ITP they have told me that in many young children, ITP often clears up of its own accord without any treatment at all. Some children find that their immune systems return to normal quite quickly and without treatment. This is why some specialists/doctors do not, initially suggest any treatment in young children. They refer to this as "watch and wait", which gives them a period of monitoring the patient through regular blood tests and basically keeping the platelet level at a safe number. At the 40 level I would think that most specialists would simply do exactly that ie. just monitor your son without issuing any drugs/treatment. All speacialists take different views and there is no standard way to treat ITP in children or adults. My specialist suggests that he would not look to issue any treatment in most ITP cases unless the Platelet level falls below 20 but I would stress that each case has to be taken on its merits (ie other medical conditions, life style, job, etc). Platelet levels below 20 would usually see the patient get some bruising or bleeding but not in all cases.

I can fully appreciate that your son suffers from fatigue/tiredness/tetchiness because I had this and still get it when my platelets were low or are falling. Infact fatigue/tiredness has now been recognised as a symptom of ITP in the European Journal of Haematology. This is a postive step forward as many specialists did not acknowledge it as a symptom of ITP and many of them probably still remain sceptical.

Anyway, to conclude I can thoroughly reccommend the ITP Support Association website at itpsupport.org.uk which has a lot of useful information about ITP in general and also has a specific section on ITP in children.

Hope all this helps a bit, best wishes to you and your son & family.

[kitlea]

Hi

My son is 4 and was diagnosed back in may. His lowest count was 3 back in mid november, but last week after an extended nose bleed it was up to 11. He does tell me he is tired on occasion but nothing that seems to impact much on his day to day routine. We are seeing a haematologist for the first time on thursday and have been told by his paediatrician that she will want a bone marrow biopsy. Did your son have this done, I'm really concerned about putting him through this procedure.

[dmyslins in reply to kitlea]

Hi there,

I am sorry about your son. I know this is all very hard and i am glad you found a supportive website. I can share with you that we have seen numerous hematologists over the past 3 yrs. My sons count dipped below 10k at one point but for two yrs fluctuated between 15k and 26k until last year it rose to about 40k and has been about that consistently. In consulting with all the doctors i found some feel the need to 'do something' while others listen more and are more individualized. If we wanted to do a bone marrow we could have done that, but we did not see the value in it for us. The information did not change any potential treatments nor increase his chances of recovery. Although additional information is always nice, it would be traumatic for our child (we felt) with out any real value. That was our opinion on it.

I would like to offer this advice as you meet with doctors: ITP is a very personalized disease and affects everyone very differently. Some kids get sick and thier platelets plummet while others rise when they are ill. Some kids show bleeding at 40k (like our son) and others are 10k and have no symptoms. Treatments are only temporary, there is no permanent medical cure. If you can observe your son closely, get to known thier symptoms and do your own research and always always question your doctors desires to do things. Childrens Hospital in Detroit does not treat until platelets are under 10k and then depending on the kid they may not even treat there. Treatment is only out of necessity because side affects can be bad, even if they are not expressed. Of course if your son needs treatment than you do it but ITP is such that parents input is critical. You know your childs activity level and you can control what they do. Also, there is a book by Joan Young: Wish by Spirit. I would be beneficial to read it.

I hope this sounded okay. I am not trying to tell you what to do but i learned the hard way there are many bad hemotologists relative to ITP so i feel the need to reassure parents that thier input matters.

Take care and keep in touch.

[kitlea]

So pleased to hear your opinion as we have pretty much been of the same mind. It's difficult to know what to do for the best and i've been happy with the watch and wait policy.

It seems that a bone marrow biopsy is standard after 6 months, but he has been so fantastic at going back to the hospital having blood test after blood test and being examined that i don't want to do anything to upset him for no real benefit. I guess i will know more after thursday.

The ITP support association website has been a fantastic source of information, and although i wouldn't wish this problem on anyone its comforting to know others are going through the same thing.

[dmyslins]

Where do you live Kitlea? We are in metro Detroit, MI, USA. Here Bone Marrows are sometimes suggested after 1 yr but it depends on your doctor. Ours never even mentioned it but one of the 2nd or 3rd opinions mentioned it as an option. I just wondered if it is something they make you do where you live or is it a suggestion? and if its standard, why i wonder?

Whats interesting to me about our situations based on what you wrote is that my son has 40k platelets and gets nose bleeds, bruising, horrible fatigue and mood swings and your son is much lower without any other symptoms. It makes me think what other factors are involved.

I also wanted to ask this to the group but i will ask you first: At the time you believed the ITP started, was there anything you thought may have triggered it? i have heard adults site stress and others site a vaccine or case of the flu...i just wondered. its all sadly interesting.

[kitlea]

hi dmyslins,

ITP does seem to be truly strange. My son has had low counts but no symptoms other than bruising and the rash. We first noticed it in january and had flu last christmas, so that may be the trigger. When he was diagnosed in may with a count of 10 he had just had his mmr, and the count of 3 in november followed a tummy bug. Can you link your sons ITP back to anything?

We live in england, i don't know if treatment differs here in anyway to the states but the hematologist today took more blood to rule out other clotting problems and SLE! We go back for the results in january and she seemed pretty keen on getting the bone marrow done. I voiced my concerns and she was very reassuring so i guess i will go along with what she thinks is best.

I'd like to ask how often people get their platelet counts checked? I got the impression that after these tests were done we wouldn't have to go back very often unless we saw severe bruising or bleeding.

[dmyslins in reply to kitlea]

We have an open script to get our blood drawn whenever we want or are concerned. i go, on average, every six weeks. It used to be more often when he was at 15k consistently, for fear it dropped below 10k. It used to be hard on my son. We then found a young man at the laboratory at the hospital we go to whom my son really liked and whenever we give blood we go to him. So at age five now, my son doesnt get upset to go so sometimes if i am just trying to gauge the symptoms we will go every 4 weeks. But if we didnt go for an entire year our hemo would be fine with that. hopefully you will have the same flexibility. HOpefully this will go away soon for you.

As for triggers, my son has many gut issues and food issues. I think those are the underlying factor. At the time we believe it started he was under much physical and emotional stress, so that may have been the trigger as well. Although at 15m he had the Dtap shot (which i think is banned is europe) and that could have triggered it as well. My 2nd son also has many stomach and gut issues. I have never vaccinated him though and am hoping that may make him less likely to develop illnesses like iTP.

[Gem1]

Hi, My daugher is just 13 and was diagnosed in late october this year with a platelet level of 3. She has always remained very healthy with no signs of bleeding, only the bruising which slowed up as soon as she stopped the huge amount of sport that she'd been doing. She's been having regular blood tests, but her platelet level is fluctuating around 3-5 still. Because she has been so healthy and shown no signs of bleeding my husband and I had become quite blase about it and just recently she went back to play in the interhouse school netball tournament. However, just before christmas she got her first period and haemorraged with it, resulting in a 3 day stay hospital and a platelet transfusion. Shes' now still on medication to stop the bleeding and also iron pills, and the doctors are looking into giving her the contraceptive pill to make sure she doesn't have a repeat experience next time. It's really brought home to us the seriousness of the condition. Her next appointment with the haematologist is in mid January when they are looking at treating her, its all very scary.

With regard to how she got the ITP, i am convinced it's to do with the HPV (cervical cancer) immunisation which she had just four weeks before diagnosis.

Good luck to all of you, It's really hard to watch our children suffereing - if only we could take it for them.

[dmyslins in reply to Gem1]

Thank you for sharing! Let me know how it goes in January with the doctor.

[kitlea]

Hi Gem1

Sorry to hear about your daughter, I hope it gets better for her soon, keep in touch.

I hope you all had a good christmas, and best wishes to you and your children for the new year.

[dmyslins]

same to you all! i will pray for a great 2012 for all of us and our children!

[sarah1234]

we have just found out last tuesday that my 8 year old son has acute itp he just kept coming out in bruises .for no reson. so we tock him to his gp who sent him for teast .on tuesday after noon we got call about 4pm. teling us he need to be admited to hosptail as he had acount of 6 .so i cant say what it like for me at the mo as we only just found out that he has itp..,

[dmyslins in reply to sarah1234]

Hi Sarah1234,

the good news is that if it is acute, the platelets will return to a normal range in 2-4months. in the meantime, if you need anything please feel free to write.

[AnthonyHeard Administrator ITP Support Association]

Hello Sarah 1234, I can imagine that you have many questions about ITP and what it all means for your son and your family. As a starting point I would suggest you have a look at the ITP Support Association website if you have not already done so.... itpsupport.org.uk has lots of useful information about ITP and has a specific section on Childhood ITP so do have a look. I would also reccommend the Platelet Disorder Support Association website which is the American equivalent of the ITP Support Association... pdsa.org.

Please do keep in touch and do ask if you need any further info or clarification.

[sarah1234]

i am reading up about itp thank you for your help. i will know more tomarrow when he gose bk to the hosptail as he gose back. every week till it has gone back up thank you again..

[sarah1234]

hi every one just thought i let you know that my son has been back to the hosptail today.and his leavel has drop quite bit it has. gone from leavel. 8 down to 2.can any tell me why it has gone from .8 to 2 plz i m quite worried now thankyou .,

[kitlea]

Hi Sarah 1234

I'm sorry you are having such a bad time at the moment, I know how worrying this is for you. From the experience I've had with my son the platelet levels do fluctuate. We have had levels of 10.17 23, 3, 11... it's never the same and of course you don't know what they are in between blood tests and we haven't been given an answer as to why this is the case.

[kitlea]

We had some good news today I just wanted to share. Had my sons blood test results from december and his platelet count is up to 20 and everything else was normal. Also he only has a few small bruises on his legs and no rash to be seen anywhere.

[dmyslins in reply to kitlea]

So happy to hear this! Once my son consistently stayed over twenty a year later he started staying consistently over 30 so i hope the same or better for you!

[catherineb]

greetings to all, i find all your comments very interesting, our son was diagnosed when he was just turned 3, that was 2 years ago this weekend, when he was diagnosed his platelet count was 3, in sits in around this since then, with a little increase when he was on steriods!!! he had gone through many treatments of steriods, Rituximab, Immunoglobulins on various ocasions, still no joy, his platelate count on the last check was 7, which i imagine to be lower now because of the bruising. He is not permited to play any contact sport, as per our consultant, it is far to dangerous. we already have had an experience of internal episode of unexplained bleeding and we found this to be extremely scary, no signs at all until he started to be sick!!!! ambulance had to be called and he spent 8 days in hospital very unwell!!! Our son had a bone marrow biopsy a short time after he was diagnosed, as stressful and terrible as this was, we were happy to know that the bone marrow was healthy and producing platlets as it should!!!! currently we are doing back to hosp next fri to start another treatment Azathioprine, which we are concerned about, should anyone have heard of this drug being used in kids please let me know your thoughts!!!!

Our little boys has regular/ nightly gum and nose bleeds, and also when using the bathroom can loss blood at times, we check him when he goes to the toilet, terrible thing to have to do with a 5 year old but, we find its very important to keep an eye in case of a bad bleed!!! good luck ot you all, i personnally know its not a asy ride when your child is unwell, i wish i could take it from him!!!! its unfair. might i also add that or wee boy is in primary one at school and has a full time classroom assistant for his protection!!!!

[dmyslins in reply to catherineb]

I am so sorry, those number are low and so scary. i will tell you, that since my original post, we have done almost two years of alternative medicine. he has increased every since the first time we started. have you looked into anything outside of a traditional doctor? we foudn a doctor that incorporates and actually uses chinese medicine and herbal remedies and all that as her primary course of treatment. we have never used a drug. at christmas he was at 242K and still maintains normal levels. We dont know if it will last forever but i can tell you we never got above 20K with the traditional route. The woman who founded PDSA cured herself of ITP and it was using like alternative methods. The book, Wish by a spirit, may be worth your time...althought its very emotional for us parents i think. GOod LUCK!

[Alex16 in reply to dmyslins]

Hi dmyslins what was the alternative treatment you received, could you elaborate, we are in the UK and would need to look for someone here.

Thanks

Alex

[Lolly7]

My daughter was diagnosed with ITP at the end of 2012. Se had been suffering from lethargy and moodiness - she had alweays bruised very easily - but her arms and legs looked horrific, and seh started having nosebleeds - I assumed she was an easy bruiser like the rest of our family, or perhaps anemic - and took her for blood tests - her BPC was 35 and she was admitted to hospital for Polgam transfusion. Her BPC leapt up to 242, then 345 over the space of a week - I was overjoyed thinking that she was 'cured'. A week later after the Polygam had stopped 'protecting' her platelets, her BPC plummeted again to the low 30's. At least we knew that her bone marrow was producing platelets - so no need for a bone marrow biopsy, just that her body was attacking them. She is currently on a high dosage 6 week course of steroids, started a week ago and appears to be coping okay - as per all the comments above - is not allowed to play contact sports and has to be careful with her diet and exposure to germs / ill people (not easy when she has just started a new school!) - but the only ill effects to date have been constant hunger pangs and serious mood swings. I am praying that these will be the only side effects that will affect her, I know they can be vast and unpleasant. She is going in for another BPC in a few weeks where I am hoping it has shot up. My daughters BPC was never as low as 10 - in fact I freaked out when I found out that it was less than 40 - I think perhaps it is a strange beast and reacts differently in everyone. I was wondering if anybody out there had children my daughters age with whom she may be able to chat online to discuss ITP and how to deal with it. I feel that thereare a lot of big medical terms flung around - perhaps coming from a peer it may make it seem more liveable than the research I have been doing indicates. We are very new to ITP - so any and all information, menu ideas etc would be more than appreciated!

[JJMcLaren in reply to Lolly7]

how old is your daughter, Lolly7?

[JJMcLaren]

I am so glad that I found your post. I have been dealing with this since my 6 yo was 2 and she gets so angry and emotional. I have brought this up to her pediatrician and her hematologist and they tell me it is not the ITP. Kind of funny how it always shows up when her PLT count is <50. I have been trying to find research that shows this or studies that are going on right now to add her to it but there is nothing out there. I have tried many different ways of dealing with this and though it seems to have gotten better for the most part she still has those days when she is just awful. I am a nurse and try to tell them that I know what's going on medically and can tell by her attitude how low she is... I am not sure what else to do but we are with you and it is very difficult to deal with.

[terri2015]

please give me any info you may have an this topic. What other health risk does a young child face with itp. My son has a girlfriend who claims to have this disease and she also claimed from having this disease she was unable to have children and now she is pregnant and myself and my son are worried about this and have now idea what to expect or what all this disease can do to a young child