My nearly 5 year old son was diagnosed with ITP in July 2011 when we noticed lots of bruising and petechiae all over his body, his platelet count was 26. (We were sent to the hospital a year and a half prior to this with similar symptoms (a nurse thinking meningitis…) but bloods were not taken, the Dr believed that it was due to some other sort of phenomena and if symptoms persist to see our GP. So I do believe my son has had ‘bouts’ of ITP since before he was 2 years old). Since 2011 my son has been seen by a consultant Pediatrician off and on at our local hospital but she believes these to be ‘isolated episodes’ of ITP. When bloods were taken they have been 26, 120, 77, 50, 176, 71, 306, 55, 56, 162. I know they have been lower many more times then his record shows but unfortunately we are often not seen until a week or more after his symptoms because the consultant discharges us when his platelet levels go up - the consultant told us each time to go to our GP if they go low again and our GP will refer us back to her. I feel like we have been going around in circles with this consultant.
Our son has been nearly symptomless since last September and we were feeling positive that he had grown out of his ‘acute’ form of ITP. However early last week we noticed his platelets were low again, with petechiae and bruises over his torso and legs. I finally got into our GP today and I asked if I could be referred to another consultant this time and he said that he was not able to refer outside his jurisdiction. He said that if he was in my position he would pay to see a specialist who deals with child ITP… (note: On a number of occasions I have had to chase the consultant for follow-up appointments and results as they seem to forget about my son!).
I was wondering if anyone has any advice to give me on what I should do or maybe someone has been in a similar situation? I am very aware that his levels are fantastic compared to some children (and my heart goes to these little ones and their parents!) I just feel like because my son’s levels aren’t considered serious that we have been left a bit neglected and without answers. If he has chronic ITP then I’d at least like to be told that and for someone to talk it through with me. I don’t even know if maybe another condition could be causing his platelets to drop? This has been going on for nearly 3 years and all I know is that my son has had lots of these so-called isolated episodes…
Any advice will be truly appreciated. Thanks so much in advance.