I am mum to a 4yr old boy with chroin... - ITP Support Assoc...
I am mum to a 4yr old boy with chroinic ITP,does anyone know who the best ITP specialist is in London, great osmund street?
Dr Drew Provan - works from The London Hospital
Drew doesn't treat children. Try Dr Maria Pelidis at St George's in Tooting. She's on the ITP Association's list for paediatric experts.
Ah thank u for all your help
We have no specialist in ireland at all which isn't good
Hello icicle if you have a look at the ITP Support Association website you can see all the UK ITP Centres of Excellence please go to itpsupport.org.uk and click on the Centres of Excellence link at the centre of the main website page.
Sorry only responding, I have a 6 year old boy who has chronic ITP. Platelet count generally around 2/3 . We r from northern Ireland, he is treated in the RVH Belfast under Doc christene McCartney. She is a paediatric hametology consultant. We also have contact with Doc John Grainger, he is Manchester based and is specialised in ITP. If u wish to contact either I can forward there details. Hope all is well with ur little boy. X
Hi catherine. my name is sabrina and im going with my 4 year old son to belfast nextt week,we also are seeing dr mccartney, we are hopin she can help us get his platelets to a safe level,at minute its very distressing as he has nose bleeds every other day just dribbling all day and its effecting his school life,also our family life as im of work at min, so we are all out of sorts,they are 12 at min which is the higgest ever they have been, lowest has been 4,he has recieved immuglobbins in craigavon for past 3 months and then had a reaction to last one,so all these treatments are very scary and as a parent u want the best for our children,and hope we get the right care for them.how long have u been going through this with ur son? do u feel rvh are helping you move forward and get ur sons health back to normal,has he had many treatments?lookin forward to hearing from u and thanks for replying
hi iccle, i can relate so well to all your concerns, our little boy turned 6 on monday and was diagnosed with ITP in April 2010. unfortunatedly we hace exhausted all avanues of treatment ie immuglobbins, steriods, Rotuximab, Elthrombopag, nothing has helped him unfortunately. He had a major internal bleed in MArch 2011 which was a scary scary experience he had been bleeding for quite some time before he was physically sick, his poor little tummy could take no more.
unfortunately he had another major bleed on christmas day just gone!!! it initally started with quite a big nose bleed on the thursday morning but it appeared to have stopped he then was in very bad form on xmas eve, running a high temp so i took him along to doc on call who checked him over and he was allowed home,
christmas morning we had to wake him to see what santa had brought and he still wasnt in that good a form all along saying he had a sore tummy. THEN His nose started to bleed big time!!!! i contacted the hosp and started to make our way there which was when all hell broke loose, He started vommitting blood.... cut a very long story short, frank lost alot of blood very quickly and it really was a emergency situation, bottom line is we have no choice but to go for surgery to remove the spleen, we had hoped he would have growen out of the condition or hoping for a miracle, but it wasnt not be, His surgery is now prov scheduled for the 4th fed, i feel sick thinking of him going under the knife but the decision was made for us on xmas evening we could not not let this happen a third time!!!!!!
Doc Mc Cartney has always been pretty open with us as has our little boys consultant in the Causeway Hospital Coleraine, although not specialised in this field has been very helpful at all times. Good luck with your visit , dont be afraid to ask lots and lots of questions, have a note of what you want to get answers to, good luck and please keep me posted i could write and write about all the hospital visits over the past years, endless stories and happenings thi9nking of you. x
Hi caterine,god readin that my heart goes out to you,i can feel and empthanise all ur worry and fears,tears in my eyes for u and ur wee man,it was all myself and family were prayin that luke gets to stay at home for xmas and not have to go to hosp,and thankgod we got our wish,first time in 3months he had a week at home with no hosp visits,although we had frequent nose bleeds but manageable.It must of been so scary watchin ur child go through all that,and now havin to go through surgery.ur in my thoughts and prayers, and with all my heart i hope this option works for frank, i will make sure i ask questions and i have lots of them,i will b more than glad to keep in touch,to find out how things go,b strong and postivie that this treatment may be franks turnin point please god :-}
Thakyou, definitely will keep in touch. Goodluck with everything x where do u live.?
Catherine, we live in co Tyrone, a village called Fintona, if u ever heard tell of???
Yes heard of it surely. Really not that far away.
Ur rite it's not, a hour and half from Belfast,well l let u know how we get on mon, fingers crossed all goes well, that's me holding on to my positivity,which is all I can do
Hi catherine. i met with dr mc cartney.she is lovely and very nice. lukes platlets have dropped back to 8.not the result i was hopin for.but i now have to move forward,she says for now she going to leave him till may.before doing a bonemarrow test,then she will look at other drugs for him.so i guess we have 3 months to turn this situation aroudnd yet.and in between times if ant bleedin head up to craigavon for immuglobbins for now.which im happy enough with at present as craigavon are just fantastic.they are just second to none.and visit dr mc cartney every month, still a worry with plalets so low if he got a knock . its just a life changin time for us as a family.as u im sure have already had to adjust to, wee frank in my thoughts and prayers for feb,hope all is well at present xx
Hi icicle, my heart goes out to u, it's always a dig in the belly when u get the results. Do u have a helmet for Luke.? We got one specially made in muckamore, ask for a referral! Totally protects the head much better than a bicycle helmet, Frank's platelets were back down when we were last up. Up this Thursday to start steroids and immuglobulins for surgery on Mon, god I hope it works,, sick with the thought of it. Be in touch take care and thank u for the prayers. X
god I think away about use,I guess it's cause I can relate to so much what ur goin through,I will have candle lit on feb 4th, u have to believe it will work for frank, I know it's not easy, but b postivite, only thing that gets us through, always in my thoughts, I have to wait till 6 month period over before I would get a referral,she told me. Also I don't know if u believe in reiki, I took Luke past 4 weeks, once a week and since last week r so bleeds have eased, funny how she also picked up from him pain in his head and right arm. This is where he always had blood taken, and side effects from immuglobins are soreheads, amazing how he felt after, a more relaxed child,hi i just something I thought I'd mention, me Id try anything if I thought it would work.all the best , take care??
Hi Catherine, just wondering how frank is after his opt, has ur situation changed anything, was thinkin away how use got on, but wanted to leave it for a while to enquire after frank, time to get over such a rushed espisode use had,well I hope he feelin better,u all in our thoughts??
hi iccle, havent been on in a while!! hows luke getting on? really hope things are improving. thank fully after franks surgery he hasnt looked back platelets at last count were 396, some turn around from 3. really hope allis well. hoping to hear from you soon xx
Hi iccle, frank is doing fantastic, been 3 weeks since his surgery and he has never lookedd back! His platelet count on leaving the hospital was 495, totally out of this world. His last count was 333, we had expected it to drop when all the pre op meds had left his system, not back up again until the 15th march. His surgery was key hole, so he was out on the 3rd day after his op, he has never complained about his entry wounds, off which there was 5!! He went back to school after mid term and its great to c him head out without his helmet, he was so proud and so happy. We always had treated him equal to his brothers and sister we never wanted him to feel different but obviously he was quite the opposite, it just made family life simpler! , and was easier for the other kids to deal with everything. His energy levels have majorly increased, its fantastic, I'm nearly frightened to get over excited, incase this turn around but right now all is going well. How is Luke getting on? I really hope things have turned around for u. Did u ever get the helmet sorted? Take care chat soon x
Great to hear all going well for use, u can start to get back to normality, Luke up now next fri to Belfast, at this stage with platelets still sittin low 10, I guess she will b givin us a date to do bonemarrow test, we not lookin forward to that, although we haven't had much bleeding which is brillant, less Hosptial stays, they wanted to start steroids again last week, but I felt no as they never worked last time, with no bleeding il hold out, take care.
hi how did Luke get on in Belfast, i really hope he did well x
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