Useless local hospital........

Sorry in advance, this message probably contains too much information! :ohmy:

Dougie had a load of nosebleeds last week which culminated in an hour long one with clots which we went to the local hospital for. Got sent home eventually and told to give him tranexamic acid for 3 days. All seemed to be good. Today though, he's told me that he had blood in his poo. So because its late, I phoned the local hospital and understandably the doctor didn't really know anything about ITP, was a bit useless, didn't really know what to do about it, so told me to start him on the tablets again and phone the Children's Hospital tomorrow.

Does this sound reasonable? Dougie's had so little bleeding in the last three years that its appearance in last week or so has really thrown me - it feels like the beginning of ITP again when you don't know when to worry and when to chill.

Any advice welcomed

Thanks, Ali

The answer from the Children's Hospital this morning was to start taking the tranexamic acid tablets again for three days. Dougie's not going to be very happy because he says they give him bad stomach cramps. Roll on the start of the elthrombopag trial is what I say........

Hi Ali,
arrgh. I am so so sorry to hear about Dougie's bleeding. Very frustrating about the local hospital. Can you call his hematologist? (or have you lost track with one....) As you know, we are new to this ITP world but we have certainly been busy in it since our arrival. I love our doctors (hematologists) at Boston's MGH. I know they would have us come in to the hematology clinic with the bleeding -- esp since both nose and poo. Our doctors are more concerned about the bleeding than the numbers is what I've learned, esp for someone like Mia -and I think Dougie?? -- who aren't big bleeders. I don't want to be the sound of a worry-wart but maybe it's worth checking where they do know about ITP?

Mia had a bad reaction to Ivig the other day (but not abnormal apparently) with massive headaches and vomiting. They did a cat scan just to be sure she was okay. I'm really sick of how medicalized it can all be, but I'm also grateful they check for bleeds.

Good luck. Please keep us posted on how Dougie is doing.
Firkins

Mega headaches and vomiting after IVIg are likely to be aseptic meningitis according to Dougie's doctor - thats what he thought went wrong for Dougie too. You should be wary of Mia getting that treatment again because Dougie's doctor says that the reaction can get worse with subsequent treatments.

Dougie's consultant said to bring him in to see him if he had any more bleeding. Fingers crossed that thats the end of it now.

hope the bleeding stops.

yes, I brought up the asceptic meningitis with her doctors. They didn't think that was it -- not quite so severe to be that ?? IDK. But we are ALL leery of that as a treatment again.

It's so intersting -- and good for perspective -- how differently they treat kids UK vs US.

prayers for no bleeding and higher numbers.
xo Firkins

Hi Ali,
I hope Dougie is better by now, I really feel for this boy. He must think this is a never ending drama in his life.
I had tranexamic acid a couple of times and it really didn't do to much, just stomach cramps like Dougie but the doctor did tell me not to take it for more then three days because there is a worry of clotting.
Milly

Hi Milly

Dougie seems fine today thanks, although he is complaining about stomach cramps from the tablets. I think he thinks his life is very boring actually - particularly those days when he gets stuck at the hospital for one reason or another. He really HATES our local hospital because even if you go and they decide you are ok, you tend to get stuck in there for hours while they do the discharge process - its very, very boring!

Actually had a funny ITP moment today. We had to get him another prescription for these tablets, and then we went to the chemist to get them. When the pharmacist came out with them, she looked at Dougie in some confusion and said she had been expecting a middle aged lady because thats who usually gets those tablets - clearly 13 year old boys didn't fit her stereotype!

Hope you are still feeling well anyway. I've been reading your posts about your symptoms with real consternation - its difficult to see how a doctor could get it that wrong to mix up steroid withdrawal symptoms with anything more serious.

Ali

Hey Ali,
Well I am glad to know I fit into the sterotype lol, middle aged women.

I am still feeling really good, but I have learned that a second opinion is a good thing. I was angry to start with about a probable misdiagnoses but now I am just happy to be off the methotrexate and still feel good. I don't know that I will ever find out if the symptoms were from the steroids but I think now that it was, wish some doctor would have thought to do the test when I first came off them.
But anyway I am glad Australia is not the only country where you wait at hospitals for hours, I can understand why Dougie hates hospitals.