Sad, maybe angry

My little man has had this stupid ITP over 8 months now..and it will NOT improve, over 8 months of counts BELOW 5, unless treated which last a whole 24-48 hours!!! As all parents feel I just want my baby back!! He just turned 2 in Feb, he is active and wants to explore and test boundaries, with no understanding of his risks, and I so badly wanna let him be 2!! In all these months they still have not given me or suggested anything other than 6mp, however they have warned me it will probably make him sick in one way or more...He is so happy, healthy, active, I do not wanna make him sick This far into it and still SO LOW guess that is what I have to do??? I am sorry I guess this is really nothing more than a vent. Family and friends don't understand ITP and EVERYONE just says you have such a hard choice, I don't know what I would do!! Although you may not have answers you know how it feels and what it means to deal with ITP. Thanks 4 listening

Follow your heart, you are doing a good job. You are right no-one understands, have you tried any alternative therapies? There are some suggestions in the complementary therapy section of this website

Hi Crystal,I think krsnanandini made some good points and agree with them. My wife and I have 4 grandchildren, all ok. I have ITP and find it difficult at times, but when I look at my grandchildren and think if one of them had ITP, I stop and think ! what would I say to the child or parents, I just can't imagine it.

But like all difficult situations, one has to just keep going and do the best you can. You will find plenty of support on this PDSA site and realise other people are facing similar situations. As your knowledge grows and time moves on you will find it easier to cope, even though in reality you still face the same challenges.

I am sure you will find the strength to keep going and do what ever needs to be done. Ask plenty of questions from your Doctors, get a second opinion if you think it necessary. Make sure you under stand what the treatment is for, thats being suggested, and what they hope to try and achieve from carrying it out. Become part of the decision making process, it will help you cope,I am sure.

Thank you both...6mp was suggested back in Oct, I still yet to try it. I can't say exactly what I'm so afraid of but everything in me says don't do it!! I fight with myself everyday what if this is the miracle drug and my baby could of been better months ago but I have put it off?? I have tried cutting out dairy, gluten, adding vitamin c things like that but not much more than diet things. I just talked to his dr about melatonin she feels it pretty safe so won't hurt to try. I have doubts it will work, but 6mp doesn't work often and I just want to try something safer. Thank you's again!!

Oh Benny we have even gotten a 3rd opinion, 2 suggested wait it out since treatments aren't working more risks to putting him through them for nothing than the ITP itself, It was the 3rd that suggested the 6mp. With no info, I asked questions, she said nurse would print me info, take home read and think about it. She did not tell me how often used for ITP, nor how often it works or side effects. When I got home I called the hemo we had been dealing with and asked her about it, and why she didn't suggest it, she replied that she has only used it maybe twice for ITP (over 30 yrs she has been a hemo) and the side effects are "well known". She than agreed it was an option.

Hi Crystal

The thing that I think you need to hold onto through all of this rubbish is something that you said yourself:

"He is so happy, healthy, active"

Thats something to be so very grateful for. Don't worry yourself to death over ITP - keep your eyes on the big picture of that healthy, happy, active little boy! Thats why your original haematologist probably didn't suggest 6mp - exactly because it is likely to make him ill.

All the best, Ali

Thank you Ali, I agree with everything you said...I just still always question the "what if". I know you didn't treat for a long time, did you ever 2nd guess yourself or did you just know?? How is your guy doing?? I must admit I thought it was the worse having such a young one who didn't understand but I've been reading the post here for 9 months and I think I might be a little "luckier". I can atleast pick my little guy up and say NO, I can't imagine seeing him in a tree

Crystal

EVERY parent second guesses themselves! About everything!

Kids in the UK usually only get treated for ITP if they have significant bleeding symptoms. I can't remember where I read this or the exact percentages, but in the States, something like 80% of children with ITP get treatment whereas in the UK the treatment figure is somewhere about 10%. But there is little or no difference in outcomes in terms of serious injury or death. Therefore, a lot of children in the States are getting potentially damaging treatments with no real medical benefit, and if you follow the logic through, you wouldn't treat most kids. I don't suppose I would find a great deal of comfort in that fact if Dougie was the one it didn't work for, but so far it has done (fingers and everything else crossed!).

If your little man isn't responding to the first line treatments and he's getting on with being a happy, healthy active kid otherwise, then maybe thats where to stop for the time being?

All the best, Ali