what to do when it feels like no one cares anymore

My daughter vanessa has been diagnosed with I.T.P. since april 19,2011 it might not seem like she has had it long but most parents know its a long road. her first count was 2,000 and she was put in the hospital immediately. Of course her count went up to 140,000 but rapidly fell within a weeks time. she has been in for treatments 4 different times so they put her on prednisone. its doing horrible things to her body and she is getting so depressed about the way she looks. the medicine has swollen her body so bad that she doesnt look like the same child verses 6 months ago. we keep her spirits high and hold on to hope for her ,but we keep getting low counts even on the medicine. she gets cbc's every two weeks,yesterday it was 79,000. the other week it was 46,000. up and down all the time but the only time we see high counts is when she goes for treatments but like i said before it doesnt last long. the hemotologist hasnt seen her in months and wont unless something is really wrong with her is what i was told. i hate feeling like i want to scream at these people to see if they can actually understand what it feels like to have a child going through this much pain. but ofcourse they dont care unless its there loved one. vanessa is 11 years old and in the 5th grade, i just want her to have a normal life verses haveing to worry about her platelets and taking medicine that is supposedly helping thank you for reading my story

That sounds horrible for her. My son has never really been treated for ITP because kids in the UK rarely are treated. So he lives with counts of under 20K most of the time. This is do'able if you don't have bleeding symptoms when your counts go down. Treatments often seem worse than the condition itself. Of course, having low platelets isn't ideal, but it might be better for your daughter than the steroids.

Maybe you should ask for a second opinion?

Ali

Foreman:

It comes down to this: If you don't feel that your child is getting the care she deserves, find another doctor. A child should not stay on Prednisone for a long time, especially with no real result. There are other treatments to try and they should be offered as options. Start looking. I would.

Please read the natural therapy section. There's some good info there on homeopathy and I really think your daughter's life will be so much better going a route like that. My boy was 10 when he was diagnosed and I'm so grateful we went the homeopathic route. It wasn't until after he sat at zero for 3 months with none of the drugs doing anything but making him worse that we made this decision. It's something to consider. She'll get her life back - quickly.....

Blessings,

patti

foreman
I am not a parent of a child with ITP but just wanted to say I think all of us can understand how frustrating this can be for the parents of children with ITP and I am sure if you could change places with Vanessa you would.
I would be trying to get her off prednisone as soon as possible and if you have to kick a few Dr's buts to get them to listen to you then do it, I feel for her as I know the pain that pred can cause.
I hope you can find a Dr that is willing to listen

As an adult I have just had a 5 month stretch on the steroids from May be 7 days without any treatment what so ever this year. My last steroid I took on Monday. Before May I was on them from Boxing Day to February. Not a good year for me this year.

I am an adult and learn how to deal with life of ups and downs. It is part of being an adult. I have learned to take a childlike view of the day and accept. But I admitt a child does not learn to accept.

Is she starving/hungry all the time too? I do know someone who had cancer twice as a child/teenage years and her mum says that she finds it really hard to loose the weight because into the habit of eating and can't stop - because of the steroids and other drugs. So some do find it very hard to loose the weight. As I am finding though in the past it has been easy enough but only been on them a month whereas this time feels like I been on them best part of the year.

You can do things to help so that when medication is stopped she will regain her figure all being well. But on the whole it probably better to aim for a well balanced 'diet' drink plenty of fluid and do some regular exercise. Talking of which I have come across a very gentle circuit training type stuff aimed at the over 50's but allowed me in and will go back on tuesday because it hopefully will all help. I am 43 so I told them am practicing being over 50. May be the hospital will help you via dietician as steroid do regularly play havoc with weight and if continue relatively normal the weight will come off once off the drugs. But I know a child wouldn't understand that

People do care and we try to care online here and glad you found the site even if for the reason. Prednisolone can result in depression and on our patient information sheets in UK - we are told to go to the General doctor if we have unwanted thoughts and change of thoughts etc when it comes to depression. Though admittedly what the GP says and do vary from practice to practice but 'we' are able to call on extra help.

Hope you begin to feel happier soon.