5 year old with ITP...not sure what to do next?

[BlossomGreen]

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.

[mags4743]

Really don't know what your GP means when he says he can't refer outside his jurisdiction!! I don't believe that to be true. I live in Glossop and was referred to a specialist at St. Barts in London who is probably one of the best. You sound that you have had an horrendous time and you certainly don't have to pay for a specialist as there are ITP specialists out there working for the NHS. You don't say where you live? There is a very good ITP Specialist for children at Manchester Royal Infirmary and I know there are others up and down the country. The ITP association should be able to point you in the right direction.

My advice would be to go back to your GP (or another one in the same practice) and ask to be referred to whichever ITP Specialist is nearest to you. As you say this has gone on for three years and you need some answers.

Best of luck.

[sailor]

Hi Blossomgreen. I see you live outside London. There are many ITP specialist in London at the Royal London & Hammersmith. I also agree with Mags4743. Your GP can refer you to another specialist for a second opinion and teatment. Log onto the support group website and look for the link to the specialist forum. There is a list of centres of excellence around the country for ITP to take your pick from but obviously London would be your nearest. Good luck and keep us all advised of developments.

[BlossomGreen]

I live in south Buckinghamshire, just outside London. I saw the lead GP at our clinic, on purpose. I brought in the list of ITP centres of excellence, asking if he could refer me to one and he specifically said that if he was to refer outside his jurisdiction the nhs would question because of cost! He dictated a referral letter for his secretary to type so I can take to a private consultant...argh.

[mags4743]

Sailor and I are both in agreement and I believe when others on this site see this post they will agree also. You can be referred to a specialist of your choice. As to his argument re cost I don't understand how the costs would be any different. You would pay your transport costs and the costs of any referral treatment would be the same whichever ITP Specialist you saw - whether that Specialist is on your doorstop or in Scotland! Sorry to say, but you need to go back and question him about the costs but do (nicely) demand to see an ITP Specialist of your choice. I am getting angry on your behalf!! You should not have to pay privately for something that is available on the NHS. You say a letter has been dictated for you to take to a private consultant. Does the letter state the name of the consultant?

Please do keep us posted.

[BlossomGreen in reply to mags4743]

Thanks so much to you and sailor for replying. The letter being typed is a general letter for me to take to a private specialist that I choose. The GP did say that if the consultant Paediatrician felt my son needed to be seen by an ITP specialist then they would send him. I felt that it was time for us to get a second opinion, to put our minds more at ease and make sure our son's case is properly reviewed. However, I walked away from that GP appointment stumped on the cost issue that he convinced me of. I have made another appointment to see this same GP, for 4th March (soonest I can get in).

[AnthonyHeard Administrator ITP Support Association]

Hello BlossomGreen you absolutely DO NOT have to pay to see an ITP specialist. You can get a referral to an ITP specialist of your choice by getting your GP or the person treating your daughter for the ITP to refer you. A full list of all the UK ITP specialists is availble at the following link....itpsupport.org.uk/itpforum/...

You could choose to go to any of the London specialists ie Hammersmith, Barts and Royal London, St George`s, University College Hospital London or Oxford University Hospital. Hope this helps. Just get your GP or existing specialist to refer you.

[MummyL]

Hello. I hope you don't mind me jumping on your forum. My son were covered in bruises and the rash. I took him to the doctors and they did blood tests. His platelets were 300 he then waited 2 weeks and there now 27. I'm going out of my mind waiting for a referral. I have alsorts going threw my head. He hasn't been diagnosed with ITP but it's looking like that. I have 8 weeks to go in my pregnancy and I'm really scared. I have seen bruising n the rash can be leukemia. My son isn't poorly he is tired but otherwise absolutely fine. Which I'm hoping is a good sign ...... if anyone has any advice please message me. Thanks x