20 mo old diagnosed with ITP

My 20 month old son was diagnosed with ITP a few weeks ago. He had IVIG treatment and we were told this is a common disease and would resolve on its own. Here we are back in the hospital for another IVIG and dangerously low platelets. We are so confused and it's difficult to understand what went wrong. This certainly doesn't seem common to me as I have never heard of this before. Does anyone share this experience? Any advice on how to navigate the peds hem/onc world?

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  • Hi Arwen. ITP is a rare condition and one that troubles many parents of children diagnosed, especially in a very young child. Do not think anything has gone wrong, it can happen to anyone due to a number of possibilities.

    But, rest assured you are not alone and there are people out here to help.

    It used to be known as idiopathic meaning there is no identified reason for it but is now known as Immune TP as it is largely condition caused by the immune system looking at the platelets as the enemy and so destroying them. The good news is that it can rectify itself in children and even adults, but there are no certainties. However if it becomes long term or chronic, most people can live a very normal life with ITP.

    It appears that your hospital are switched onto the condition, but there are specialists in pediatric ITP. I suggest you join the ITP Support Group via the link on the home page of this site. They produce much informative literature. They also have a convention at the end of April in the Midlands and there will be experts speaking at that conference on ITP including a child specialist from Canada who is a charming man and one of the world's authorities on ITP. If you decided to attend, you would be able to attend the various lectures AND meet and talk with the many specialists in an informal atmosphere over a coffee. They are always pleased to meet with the delegates and discuss problems. You will also meet others who have the condition and the mums and dads who share your concerns.

    Keep positive and keep us informed of developments.

  • Hello Arwen, ITP is infact quite rare, it is one of over 6000 ofiical RARE DISEASES. To give you an indication there are about 4000 people in the UK affected by ITP and that figure in the United States is 200,000.

    I would highly reccommend the ITP Support Association website as a fantastic source of information itpsupport.org.uk. It has a really helpful item on ITP in childhood written by one of the leading experts in ITP in children Dr John Grainger. The link to the item is ....http://www.itpsupport.org.uk/childhooditp.htm

    In children ITP is often brought on as a reaction to something as simple as a bad cold/virus/flu/infection or as a reaction to a medication or immunisation. In children ITP can often go away quite quickly, albeit not in every case. Many children see ITP go away as suddenly as it comes along in the first place and often this is within a few months. So in many cases the doctor/specialist will not offer any treatment or medication to children because the ITP is often short lasting. However the doctor/specialist will always treat each case on its merits and take into account the symptoms that the patient is showing and how severe those symptoms are plus any other medical history or conditions.

    Please do join the ITP Support Association, as they can send you many useful items of literature and information that can help . Also you may wish to join in our Facebook Group too at facebook.com/#!/pages/ITP-S...

    Hope this all helps Arwen but do keep in touch there are plenty of people to share knowledge and information so just ask.

    PS I was diagnosed with ITP in 2006 at the ripe old age of 46 with a platelet count of 4 and I have been in remission since August 2010 with a healthy platelet.

  • Hi! Anthony heard how did you go into remission??

  • I had Rituximab treatment in August 2010, thankfully have been in remission ever since. No medication at all since August 2010 and platelets over 100 ever since, best count was 200 lowest count 119 , last count 134 in November 2011. Just hope it continues.

  • What were the side effects for rituximab?? How long did you take it for? How many mg a day? Did you have to check your liver often??

  • Side effects for me were tiredness and headaches, albeit Rituximab is a very serious drug and there can be very serious side effects so it is very carefullly monitored when it is being given. It can impact on breathing, liver, kidneys.

    The treatment is given in 4 seperate doses/infusions and a gap of a week is given between each. Each dose takes about 5 or 6 hours as they monitor very carefully any reaction that may happen. I did get a reaction with my first dose after about an hour. I got a very sore/dry throat about an hour into that first dose and so the infusion was stopped for an hour to make sure I did not develop any further/more serious reaction. Thankfully alll was well and the dose continued without problem, albeit that first dose took 8 hours to deliver.

    With Rituximab it can take a while for the platelet count to respond and my specialist warned me that it could take anything upto 3/4 months. BUT luckily my platelet count responded straight away and increased from 34 to 119 just a week after my first dose.

    As you suggest Rituximab does sometimes have side effects for the liver and kidney function so I was checked monthly after my treatment was completed for the first 6 months. Thereafter as my platelet count has been well above 100 ever since and there appear to be no other adverse reaction I am only checked 1/2 yearly now.

    The thing with Rituximab is that it is fairly expensive (£25000 for a treatment I was told) and it can have quite serious side effects so it is monitored very carefully.

    The positive is that if Rituximab works for the patient it can then be taken again as a top up dose if the platelet count lapses. I hope that I don`t need to face that prospect but it is likely to be the course we take if I do lapse.

  • Did u get the rituximab in the uk on the nhs?

  • hi, my son was diagnosed with itp last august after a massive bleed from falling at my sisters wedding, he was 22m at the time, we had weekly bloodtests and his platelets hovered between 10 and 18 until october we got a result of 78 just days before his 2nd birthday, by november they were in the 200's where they stayed, he was signed of completely in december. it is very rare, but luckily on most cases with children their body rights itself just as quickly as this horrible disease comes. it seems like forever when your seeing the poor little baby go through it all but mostly it goes for them with no ill after effects. my son is now in perfect health, fx its not long til your little ones all better xx

  • This all sounds very reassuring. Thank you. It's nice to know we are not alone although wouldn't wish this on anyone. I think it's the unknown that is the most difficult to cope with. We were up to 82 last week and assuming the increase would continue until I noticed a few telltale dark purple bruises on his feet a few days ago. I think finding this resource has helped greatly.

  • Arwen I don't know where you are in the world but in the UK children are usually not treated unless there is bleeding. Most young children will spontaneously recover in a few weeks or months and treatment makes no difference to the outcome.

  • I'm in Rochester,MN at Mayo.

  • I don't know what MN means but I'm guessing the USA. Doctors in the US treat children with ITP far more aggressively than they do in the UK so good luck with that.

  • Arwen,

    The ITP Foundation is an absolutely fantastic resource for ITP information and since you are in the US, You can also check out pdsa.org

    I am hoping your child has a spontaneous remission from ITP, but you have the best of the best at Mayo Clinic. Remember you are not alone, keep positive.

  • GretaB points you to PDSA where you will get all the North American news,discussions,availability of US treatments ,medical insurance etc. PDSA will be holding the Annual Conference in Bethesda MD. in the summer. Many of us in the UK are members of both the ITP Support Association and the PDSA to get as much information on ITP as knowledge is good idea. As CamdenGirl says many if not most very young children recover from ITP and the policy to treat young children is to watch and wait giving treatment only if necessary. Good luck and you will find plenty of support from all of us who have this rare disorder.

  • I have found the information from ITP Support Association invaluable. When my son (16) was first diagnosed in May 2012, I was handed a leaflet to tell me what was wrong with him. If I asked any questions I was told to read the leaflet.

    Various other problems occurred, he has been described as an unusual case and fortunately, he was then referred to Alder Hey and is now being given the treatment he needed.

    Having been on Prednisolone since September, his platelets originally responded and went to a record (376). I had a glass of wine that day :) but after trying to wean off the steroids for the 3rd time with no luck, he had his first dose of Rituximab this week, with a second dose in two weeks time. Luckily no side effects and we have our fingers crossed that this works.

    ITP Support Association kept me sane. Before I found this site I searched the internet and there are some real horror stories out there. I have stopped doing this now as I was a nervous wreck after reading some of the things. Just remember that all cases are different and just because you have read that something has happened to one person doesn't mean it happens to everyone.

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