3 year old child with newly diagnosed ITP advice please

[TheKidsMummy]

My son was taken into hospital last Sunday with suspected meningitis. After tests etc. it came back he had ITP. His platelets were 3 and he was displaying bruises everywhere. After being in and out of children's ward on Monday and Tuesday, he was seen by a consultant on Wednesday who admitted him immediately and he underwent IV immunoglobulin. His platelets rose to 31 and at the moment, his bruises are fading and no new ones are appearing (except for a couple in his cheek). My question is how long roughly will this last? I mean, could his platelets continue to rise and stay that way? We've not been given much info and from what I can tell online, it's something he'll grow out of bring so young. I'd not heard of ITP until last Sunday and it feels like we haven't had time to digest anything before we've had to start on this journey of treatment. Any advice would be greatly appreciated.

[MOT2009]

Hi, Sorry to hear about your little boy. My son was too diagnosed with ITP back in April he was a platelet level 3. I never heard of it and wasn't told much either by the doctors which sent me out of my mind. My son I done a lot of reading on this and to be fair it can be quite scary. My son was 18 months old when he was diagnosed and within a week his platelet levels went from a serious low of 3 then straight up to the normal range of 432... Doctors agreed for no more blood testing and believe it was caused by a virus. After being told that I felt relieved but I become so paranoid I demanded a further test 10 days later and his platelet levels dropped to 64, my son was just over coming a cold, which apparently it can cause a drop in levels. We have seen the consultant who still wants to do regular blood samples for the next few months and they last few he has had have all been normal range. I still see lots of bruising over my son and panic so much. But I have to keep telling myself he is 18 months old and kids that age and your sons age will have a lot of bruising as kids that age are up to everything. My son was never given medication for this but have read all doctors and consultants look at this differently. I worry when my son gets ill and know I need to take extra care with him. Because your Son is young its a very good chance its acute ITP which can last up to 6 months. Its more stressful for the parents than it is them. I brought my son a head guard at the start for my piece of mind. HoPe your son recovers soon and hope this was helpful. Take care xxx

[TheKidsMummy in reply to MOT2009]

Thank you for sharing - it helps knowing you're not the only one who's walked this path. Sending you and your son best wishes x

[Jojw]

My daughter was diagnosed with ITP with a count of 3 in May 2011. She was 4 years old. As there was no active bleeding and she was only showing severe bruising she was not treated and I was given the advice of avoiding situations where she could bang her head - so no more bouncy castles. Her count didn't start improving until August 2011 and when she started school her count was 34. It continued to improve to 70 in October 2011 and then dropped to 13 over Christmas - when she again had large raised bruises from small knocks and petechiae over her body. As the ITP had lasted over 6 months she had a bone marrow biopsy in January which showed that there was nothing wrong with her platelet production. In March her platelet count had increased to 80 and her last count in July was 132 and she has now been discharged from her consultant. So it has taken just over a year from her to recover and I'm hoping that she won't relapse.

It was really hard at the time when the advice was not to treat her but as I said she had no active bleeding - just a couple of nose bleeds after she'd been diagnosed - and the side effects of treatment sounded scary. Also, it was worrying for me when her count dropped at Christmas and I started to think of what her future with ITP might be (although I know it's manageable and it could be alot worse). But she has got over it and is now a happy and healthy 5 year old.

The ITP Support Association in the UK is an invaluable source of information and I gave my daughter's primary school the information that they provide for schools. They also provide information on Childhood ITP. I know how worrying it is when they first are diagnosed and an active 3 year old boy is probably less likely to want to be restricted than a 4 year old girl.

[TheKidsMummy in reply to Jojw]

That's very true and he's an incredibly boisterous boy too! But thank you for sharing your experiences. I wish you and your daughter all the best x

[sailor]

Hi Kidsmummy like Mot2009 and Jojw, sorry to hear about your son and his ITP. There is not a lot more advice at this stage that anyone can say that would add to what has already be stated by them. I would however reiterate that you are not alone and there are people out there who have the condition ( me included ) who are willing to talk, comfort and more importantly, offer support. Jojw has suggested you contact the Itp Support Association where you will be able to obtain this and more important information on the condition also centres of excellence and the consultants who specialise in ITP. Hopee your son improves soon.

[TheKidsMummy in reply to sailor]

Thank you for your kind thoughts x

[AnthonyHeard Administrator ITP Support Association]

Hello TKM sorry to hear that your son has been diagnosed with ITP and that you have had such a worrying time. I was diagnosed at the ripe old age of 46 and I can well imagine how traumatic the entire episode has been for you , your family and of course your young son.

I would echo much of what has been said already in previous posts.

The ITP Support Association main website has lots of excellent information about ITP at itpsupport.org.uk .

In many young children they get ITP as a response to an immunisation or medication that they may have been given so that is something to ask your hospital/specialist about. In many young children ITP does often disappear as suddenly as it has come and in many cases hospitals/specialists do not actually offer any treatment straight away as they feel that the ITP may well clear up without treatment. The ITP Support Association do have a number of very useful information leaflets and I would definitely suggest you contact them as they have been an invaluable source of help for me.

You may also like to consider getting a second opinion on your son. ITP is such a rare condition that not all hospitals/doctors are that familiar with it. The ITP Support Association have a list of the UK specialists in ITP, which if you are UK based you are entitled to get a referral to. If you email the ITP Support Association on [e-mail] they will send you the full list of specialists and then you would need to get a referral to the specialist nearest to you. A referral would need to be made from either your GP or the doctor/specialist currently teating your son.

I would also suggest you have a look at the ITP Support Association Facebook Group, if you have not already done so. Many ITP sufferers contribute to the Group and we all learn from all our ITP experiences.......facebook.com/#!/pages/ITP-S...

Lastly I would simply say that with ITP the most important thing I have learned about it is that no two ITP patients have the same symptoms and we all respond differently to the various treatments. ITP is random in that we do not know exactly why one person develops it and why another person does not. There are some things which MIGHT trigger it such as a reaction to an immunisation or medication but nothing much is definite about ITP.

Anyway hope all this helps but do let us know how you get on.

Best wishes Anthony

[TheKidsMummy in reply to AnthonyHeard]

I really appreciate all the points of reference you've included - I'm sure they'll be an invaluable resource in the weeks and months to come. X

[NickyD]

Hi TheKidsMummy. You are certainly not alone. There are many people on line that live with ITP and manage with the worry and fear of the condition. I have been on this site when I have been down and have had lots of encouragement to keep going. Hang on in there and hopefully your son will grow out of this condition. Keep us posted. NickyD.

[TheKidsMummy in reply to NickyD]

I will do. Thank you for your wires of support and encouragement x

[MaineMom3]

Hello,

My then 3 year old son was diagnosed with ITP in May 2011 with his lowest count being 8 at that stage. He showed severe bruising and a petechiae rash (blood spots that don't blanche when pressed). He was admitted immediately to the hospital with the initial concern being meningitis or leukemia. His care was transfered to an oncologist who specialized in blood disorders. After a day of testing, we finally got the ITP diagnosis, thought to be brought on by a recent viral illness. It was explained to us this way (in laymen's terms!): "Your son caught a virus and his immune system went a little haywire. The immune system has confused his body's platelets with the virus it was originally trying to get rid of. This could take some time to sort out." Of course, it's a little more complicated than that, but it helped by giving us a simple reassurance about what was going on. Our little guy was then treated with two IVIg infusions and was discharged after three days in the hospital. The only side effect he had from the treatment was a bad headache, which was treated with Tylenol. From there, our son had a complete blood count done every few days for a couple of months until his counts reached the safe zone. It took about seven months to get back into the high 100s and about ten months to get to his highest count of 232. He then had a relapse in April 2012. He began having severe bruising and petechiae all over his body again, so we knew immediately what was happening. His blood counts came back at 30, so not low enough to treat, but we continue to monitor his counts to date with checks either as needed or every 2 - 4 weeks. In July 2012 his counts rebounded to 100. Our oncologist says that it's not unusual to have up to three "recurrences" with an acute case of ITP. Since our son has now been living with ITP for over a year, we are a border-line "chronic" case, though this will only be confirmed with time. In the meantime, we have come to find that his body reacts very consistently to where his counts are and we are able to "guess" what his counts are on the way his bruises look. We find with lower counts the bruises are smaller, blacker, and last a week or longer. We also know his counts are low when bruises begin to show up on his back (like the bony hip or shoulder areas). With higher counts, the bruises from normal 4 year old play tend to be more colorful, bigger, and go away within a day or two. The petechiae on the chest, stomach, mouth, groin, and back appears when we are generally at 50 or lower... and, of course, the lower we go the more we see. Now that we have those kinds of signs, we feel like we have a better handle on how he's doing. For us, we generally use a "feet on the ground" rule for anything lower than 50, while over 50 to 100 we just use a bit more precaution. Over 100 and we don't worry. Below 20, we treat and are very careful about his activities. We found some great articles and further support through the Platelet Disorder Support Association (pdsa.org/). They offer a lot of resources and information. One article is specifically geared towards children, so be sure to check that out. We always print it and give it to our son's caregivers so they are familiar with the signs and symptoms. We do not have a medical bracelet for him, though I would probably get one as he gets older if he does not grow out of it. From everything I understand and with a year's experience, we find it to be a very manageable (but scary at first!!!!!) disorder. It has barely hindered our son's activities other than the expected dislike of blood work and needles. However, even then he's gotten so used to the "pinches" that he now sits in the lab chair by himself and picks which vein to use! Kids are super resilient! I hope this has helped. I remember feeling very alone and scared when we first found out, but it turns out that there are a lot of people in the same situation and it's harder on the parents than the kids themselves (our son is completely oblivious to anything going on when his counts are low!!). Good luck and please feel free to contact me if you need someone to chat with. Take care!!!

[TheKidsMummy in reply to MaineMom3]

Thank you!! Actually have tears in my eyes and a lump in my throat reading this, it sounds exactly like our son! He has a repeat blood test due next week to see how his levels are though to be honest, he has hardly any bruising at the moment so we are continuing to hope this is a one-time occurance. Thank you for sharing your experience, it really helped with the simplified terms. X

[MaineMom3 in reply to TheKidsMummy]

You're welcome!! That's such a good sign that he doesn't have much bruising! From everything I've read, almost all acute cases occur in children and almost all acute cases end up being a one-time, six month at most situation (sometimes even quicker). The statistics are totally on your/our side - ITP is such a fluke thing! Of course, try telling a mom not to worry when she hears the word "bleeding" in the same sentence as her child's name! Right?? Fingers crossed for the next blood test and hugs to your little guy! Oh - by the way - I meant to also say IVIg worked really, really well for our son - it got him up into the 30s within a week and he continued to rise after that. My guess is that he will continue to go up over the next few weeks/months without any further intervention. Also, we found that we preferred to stay away from the other steroid based treatments just because there is the chance of it affecting future growth. Different doctors have different tolerance levels for dosages in kids, but I just did not feel comfortable with any kind of steroid treatment since the IVIg worked so well. And, one last word of advice, I started a medical journal (just a spiral notebook) for my son and write down any time my son has ANY kind of labs or results. It helps me keep track of everything. It's not anything elaborate, but it helps see where we are at any given point and then I don't have to remember dates and numbers... Again, good luck - it will all be ok!!!!!!

[Jmcleod in reply to MaineMom3]

Are there any updates

[tpbabu1994]

Sir i was diagnosed with ITP at the age of 2. still did not get any solution. now my age is 18 and my sweat glands got destroyed and there is no heat transfer in my body so i should be in cold place or pour water regularly. Now a days ITP is not a big problem we can manage it ourselves. even doctors say no need of any of spleen removal. It is a gods gift since any person whose platelets is less than 50 thousand they will die but these patients can manage even at 8 thousand. once i got platelet count 8 thousand but i managed only one thing we should not get any hurt and there is a chance for platelets to increase automatically at his hormonal developments

any more suggestion,

contact me: INDIA-09444333761

[TheKidsMummy in reply to tpbabu1994]

Thank you for your advice - greatly appreciated x

[AnthonyHeard Administrator ITP Support Association in reply to tpbabu1994]

Hellotpbabu1994 I came across the following video on You Tube from a Doctor in India which maybe of interest to you. Neither myself nor the ITP Support Association actually know the Doctor concerned or have any knowledge of his work but you may wish to contact him direct and hopefully it may prove to be helpful for you.

The link is..... youtube.com/watch?v=FJnhN6N...(Not working as expected?)

[zaksmummy]

my son was diagnosed in april he will be 3 this month we were in another country when he started to get loads of brusies then the purple spots we paniced had a 3 day stay in hospital i didnt speak the language we managed to get a flight home and after blood tests comfired he had itp they think his itp was 7 but had come back to 24 by the time we got him home before the itp he had croup which they think triggerd it he has had 3 lots of croup and 4 chest infections since xmas and last month we went back in to hospital as his breathing got worse we though croup again but this time he had a thing called weez which was life threating he improved and we were moved to high dependency unit after we had been discaraged 4 days he had a high temp and some bruise we went back to hospital and the itp was back this time 12 i need to do his blood test tomorrow to see if it had come up he is a twin and it can be hard stoping him routh and tumble with his sister i hope it will have improved by the time he starts nursery school september they are also treating him for astma as well even though they said he is to young to diagnose with astma

[TheKidsMummy in reply to zaksmummy]

Oh bless you, it seems that you're having a tough time of it too? If there's one thing I can vouch for, it's the support that this site gives you. We may not have answers but at least we know this is a road well travelled by others and there is a light at the end of it. I wish you and your son the very best, please let us know how he gets on. And thank you for sharing your experience; I know that talking about it isn't always easy. X

[tammie78]

Hi TKM i'm sorry to hear about your son being diagnosed and fully understand how scary this can be when not really much info is given regarding I.T.P.

My son was diagnosed at 10 months old with Chronic I.T.P with a platelet count of 2.

Samuel is 4 now and his platlet count is 6. He has had such a struggle over the years bless him including having 2 major head haemmorages aswell as internal rectal bleeding.

To this day i ask myself the same question over and over! Will Sam ever beat this??.

I really hope your little boy is ok and outgrows it so much faster. Take care x

[Jmcleod in reply to tammie78]

Do u have an update

[Destinys_mommy9788]

Hello my name is kimberly and mydaughter was diagnosed in july and i felt the same way usually it takes a year for it to either go away or stay. Destiny gets two doses of ivig every two weeks where r u from