Nicki

Hello all. I'm newly diagnosed with ITP, and am looking for any hints, tips, tricks that anyone has to deal with this condition. Here is my story:

I was diagnosed with ITP on March 19, 2010. I was in the hospital going into labor with my son, and they gave me a blood test to check on my gestational diabetes. Lo and behold, my blood count came back bad. They told me that if they didn't stop my labor, I might not live through delivery. They gave me shots that slowed down my labor, but they weren't able to stop it completely. They gave me IVIG to try to boost my platelet level, but instead of increasing my platelets actually went down to 8,000. After a few days (yes, while still in labor and getting shots to slow it down), they decided that they weren't going to be able to help me, and sent me via ambulance to Froedert Hospital. This was Monday morning, and I had already been in labor for 3 days. At Froedert, they started pumping me with straight platelets and condensed red blood cells. At some point (I don't remember if it was still Monday or if it dragged into Tuesday, I was a little out of it), they were able to get my platelet count up a little, and stopped giving me the shots to stop labor. So, I was finally able to start pushing out my little boy. And he never came out...his nose was stuck on my pubic bone. That's when they realized they had to do an emergency c-section. They started pumping in the platelets so fast it was actually painful. They were able to get my count temporarily up to 80,000, and then took me into surgery. At 11:32am on March 23rd, my little boy was finally born! He wasn't breathing, so he was sent to the neonatal unit to get his vitals going. (Long story short, my little boy is VERY healthy now and doing great!! He just had about a week of special care because of the rocky start.) I was stuck in the hospital until March 28th. Tons of tests, biopsies, and who knows what was done to me during that week.

Since then, I've been through 4 rounds of Dexamethesone. That was NOT fun. They raised my counts while I was taking them (all time high was 63,000). A week after each treatment, my counts would go way back down.

As of today, I'm waiting for my next doctor's appointment with my hemotoligist so that we can talk about what my 'options' are. That makes me a little nervous.

What things did any of you find that maybe helped raise your counts? Is there certain foods that some of you found helped? How do you cope with the fear? I'm always terrified that something is going to happen, and I'm going to be home alone with the kids bleeding to death. (Kids are 5 years, 4 years, and 3 months.)Has anyone else had the reaction to the IVIG where it actually dropped your platelet count instead of raising it? What do you do about the fatigue? dizziness? sadness? I'm quite new to this, and quite frankly I have no idea what's going on. The more research I do, the more confused I get!

Hi! You had a scary entry into the ITP world. Okay, the hard part is over, danger is past. You need to know that you can live normally with this, and a low count does not mean you will bleed to death. Many of us have been under 5 for periods of time, and we're fine.

The treatments work different for everyone, so there is no "one size fits all". I responded to Prednisone and Rituxan, but did not respond to Win-Rho or Danazol. I have not tried IVIG or Dex...just didn't want IVIG because of the long infusion time and the temporary affect. Dex will be my next treatment if and when I need one. I have been in remission for the past 6 years (have had ITP since 1998).

I don't know that IVIG lowered your counts, it probably just didn't work to raise them and your counts were on the way down. There are no foods that help. As for the fatigue, I didn't find anything to help...just kept going and eventually things got better. I also had dizziness, that also got better. I didn't feel sad, but did have steroid induced depression. I was on anti-depressants for a while and that helped.

Try not to worry. Sometimes ITP is temporary after pregnancy and your counts could normalize in time. In the meantime, keep talking here - you'll get a lot of great advice.

Nicki bless your heart, you and your son had quite a time there for a while. Thank heaven he is a healthly little one who will soon be giving his siblings a run for their money!

Here's the treatment page for conventional treatments - once there you can click on each one and read about it. You can also check out complimentary treatments. The important thing is to know what is out there and know what you might want to do.
www.pdsa.org/treatments/conventional.html

As Sandi said, we all respond differenetly. She didn't respond to WinRho, I did & have been in "remission" since having it. Prednisone put me in my first "remission".

I didn't have fatigue. You have to remember that your body is also trying to get back to normal after having a baby.

I was really hoping there'd be some help for the fatigue. I'm having a really hard time getting through my days lately. I don't think its related to the pregnancy, because when I was on the Dex and my counts were up, I wasn't so tired. Crabby, yes! But not tired!

Thanks for the link! That helps a bit.

Another question I had that I forgot. When my doctor was doing a bone marrow biopsy, he said that he couldn't pull any marrow out because it was dried up. Does anyone know what that means? Has anyone else had that?

Dex will cause a lot of fatigue when you stop the drug. It takes time to recover from that.

Dried up? I've never heard of that. Bone marrow shouldn't be dried up.

Hi Nicki Wow, what an ordeal! Glad to see that you and baby are doing better now. I can relate to the fatigue too, as I think most of us can. I haven't found any cure-all for it either. I just keep keeping on. If you feel the need to rest, then that's what you gotta do! You gotta take care of you before you can take care of anyone else. Like Sandi said, there aren't any foods that cure any part of ITP but I believe that changing your diet could help with the symptoms. I know, doing all the research can be confusing but start taking notes. After awhile it will sink in.
I would surely ask about the bone marrow thing. Sounds a little weird to me too. Please let us know.