Acute vs chronic ITP

[Ridgecrest]

Hello everyone. My experience with ITP began on this past Thursday though I didn't know it at the time. My son is 5 years old and was playing at school when another child scratched him on the face. We had a very difficult getting it to stop bleeding. I attributed this to the fact that it was a face wound. That same night I noticed a bruise on his back. This was odd because he did not recall falling and the bruise was on a soft tissue spot. In addition my son rarely bruises. Friday was uneventful. Saturday was my youngest daughters birthday party and while applying son screen to my son my heart skipped a beat. I have some basic medical knowledge so I recognized the marks on his chest arms and legs as petichial rash. As a turned him around I could easily count 30 bruises on his body that were awful in appearance. After a little research that night, I brought him to the pediatrician who warned me based on his appearance that we were probably looking at a hospital stay. His labs put his platelet count at 2000. He was hospitalized and started on an IVIG transfusion right away as his petichial rash seed to be spreading right before our eyes. He bruised everywhere he was touched and became so lethargic that he was almost non-responsive. The docs said ITP and say that it is most likely acute. My concern is that my son had not been sick at all for months before this. Does this affect his likelihood of dealing with this problem again? Any additional information will be appreciated. I have another child with an autoimmune disease so I am praying that this temporary but trying to prepare for the worst just in case.

[inkypinky61]

Hello Ridgecrest - our son (who is now 23) was 6 years old when he developed ITP. His platelet count dropped very low and, in hospital, doctors tried to confine him to bed in case he knocked himself - even his socks were creating bruises on his legs. Because he had not been obviously ill recently, doctors were thinking about doing a lumbar puncture to investigate the cause but the haematologist asked for more time to look at his bloods and eventually found that he had had glandular fever and explained that it can often be asymptomatic in younger children. In addition, he had quite recently had an MMR booster which doctors felt might have been implicated. Either way, they were happy then to follow a 'watch and wait' approach and, in fact, he recovered very quickly and had a normal platelet count with a month and no repetition since. Three years ago, our daughter (then 14 years old) also developed ITP. We don't think her platelets ever dropped quite as low as her brother's (the count was about 23 when she was diagnosed) but she has the chronic version and her platelets now hover around the 50 mark. Again, the trigger might have been a vaccination - the doctors speculate that it is possible that our children have a genetic susceptibility to responding this way to something in the vaccines but are keen to say that it is still better to have the vaccinations. Our daughter has learnt to manage her ITP pretty well and doesn't have any treatment other than Tranexamic Acid for heavy periods. She gets very tired and has to take naps and, as a dancer, she has to be careful not to do anything to risk a head injury. We still hope that this condition will spontaneously disappear but, as time passes and we still see the bruises, we don't get our hopes up too high. As parents, we worry about it more than she does and, as she will be leaving home to go to university next year, we wish she didn't have this vulnerability but it is what it is and she is sensible about it so we continue to watch and wait. I hope your son recovers as quickly as ours did and he is soon running about playing and your ITP experience is quickly a dim and distant memory. Very best wishes.

[sailor]

Hi Ridgecrest. ITP in youngsters is very worrying for the parents and as Inkypinky61 has said, is probably more so than for the children. Never the less, it does need attention, even if a wait and see approach is adopted. It is well documented that young children can get over ITP as quickly as it comes and certainly within 6 months.

However, should you have any real concerns about the treatment, or want a second opinion, look at the ITP Support Association web site for the centers of excellence where there are certain hospitals that specialise in ITP for children. Hopefully there will be one not to far away from you.

I have had ITP for 20+ years, most of the time with a count around 10 and been on no medication except when I needed my count boosting for surgery. The medics thought I contracted a virus when working abroad but who knows. I have been lucky

Obviously more difficult for a toddler who is no doubt running everywhere and fearless like my grandson. Do however make his school aware of the ITP and the ramifications, but don't wrap him in cotton wool.

Good luck and keep positive and let us know how he develops.

[kered]

I agree with Sailor who has lived with low counts for a long time and brings such experience and calming influences to people like me who are chronicITP sufferers. The evidence is that if it comes so quickly it will also go quite quickly. The term acute ITP is now less favoured ,think, than persistent which lasts from 3 months and becomes chronic after 12 months. Good luck with an active 5 year old and you have every reason to be positive about the outcome

[Ridgecrest]

Thanks everyone for your support. My son is still doing well. I wish I had been offered the option of waiting to treat. I have read several other posts of children with counts only a little higher than my son's and those parents were given the option of waiting to treat. I feel that the IVIG made my son much more sick than the ITP.

[gr8tmumof2]

My daughter was diagnosed with ITP when she was 3 and she just turned 7 today she is a VERY Chronic ITP her Dr said she is 4% of the population with ITP that they can not control. she has had countless IVIG's with steroids and her counts drop very very quickly. have since she was diagnosed. she gets IVIG's almost every 2 weeks if we are lucky. yes the first few days of the IVIG he will feel really sick. my daughter gets the same way. the only thing that seems to help her is some tylonal just before she gets treatment and for a few days after that. If your little one does have the acute version it should go away with in 6 mths. Also the Dr's told me that the steroids help keep the counts stay longer. Hope your little one gets better soon.