Splenectomy that didnt work, now what...

I am a mother of a 19 yr old daughter that was diagnosed with ITP this past March. Huge scare of course, and so much unknown. She has done prednisone, and treatments of IVIG. And after months of the drugs, and teh back and forth to doctors weekly, we asked for a referral when she mentioned she highly recommended a splenectomy.
This doctor highly recommended the splenectomy, as she responded to the IVIG very well. This doctor is also on the list of dotors here on this website. So we felt confidante to proceed.
She had a dose of IVIG proir to the surgery, so the platelette were high.
Surgery went well, but there were complication in her lung. She did have pneumonia in september, so the doctors think maybe this did not clear up 100%, and then with the surgery it triggered it again.
Needless to say, it was very hard to cough and bring up the mucus. So her bottom part of her lung filled with fluid. So a hard turn for her. after many different excerisese I am happy to report she is doing very well, and lung is near clear.
But the bad news, after the week of her platelettes being high all week, 140 to 170. Today they dropped down to 28k. They gave her prednisone late afternoon...and it kept dropping...she was at 5k a bit earlier. The doctor high reccommended a blood transfusion. So scared, and trusting him....He has done this tonight.
They are reccommending a newer drug for her to use.....Romiplostim. Which is only about 3 yrs old. They gave us reading material and did speak to us.
First thing i read on the WArning/Caution....and sticks out to me...rare...but could have deadly side effects.
So of course, this scares me to death to even think for a minute to chance this
Plus, while the doctor spoke to us, me mentioned insurance MIGHT not cover due to being a new drug. And he didnt want to cause hardship.
Well reading more on the internet, I seen a wholesale price of 55k+ a year.

Please looking for any knowledge on this drug, or anyone that has had any type of situation like my daughters. Or a good place to call and get a few more opinions before we make a next more .
thanks you.
Prayers too please!!!

Romiplostim, or N-Plate as it is called here, is widely used for ITP. Many people here have used it with success. The drug should be dosed so the counts stay around 50k; counts should not be maintained in the normal range. Although it is a newer drug, few have had problems with it and studies so far have shown that it is safe.

I'm sorry your daughter's splenectomy didn't work. They sometimes don't work. Splenectomy success has nothing to do with whether or not IVIG works. That theory was disproven long ago.

Hi ,
I also had Splenectomy that was considered "slightly" successful .
this after Prednisone , IVIG , & winro all failed . Doctors said once spleen is removed ,
Winro is no longer an option . But Winro worked the Best/longest for me .

For some reason I have now been steady at 60k & above for the past year. (THANK GOD).

There are other meds to try , one being Rituxin & also Nplate ?
There are a few posts in GENERAL TREATMENT here if you dig them up.

hang in there , My Prayers With U

SuperDave
trying to stay positive

thank you for the hopeful insite. I have been reading alot about the Nplate...and the doctors do think it would be the best try.
I have also been reading all the information on this site on the more natural ways...diets etc.
and funny thing, my husband and youngest daughter both have celiac. My daughter has it much worst then my husband. And there was information in all the readin, stating that food allergies could trigger too.
So i figure changing the diet a bit is easy stuff, and way less of a risk.

thanks for the support. its a new day...and ready to fight this head one!!

thanks super Dave. so happy you are heading in the right direction now. I have also seen alot of things where time helped. My son as a boy on his football team, where he has ITP and his doctor at Children hospital doesnt want him to do the surgery. He does respond to the meds well either. So needless to say he is walking around with platelettes danergously low. The mother is in hopes they will go back to normal on their own. Time will tell i guess.
As a mom, I sit and think, " did we move on the surgery way to fast???"
the surgery went well, but she had pnemonia about 2 months ago. So after surgery they think the left over mucus was stirred up...and then full force again. With not being able to really cough, she had the one lower lung filled with fluid....beter now thank god. But did sure make the surgery much more complicated afterwards. And still here in the hospital 1 week after surgery.

thanks for the prayers...we need them all

Splenectomies are starting to become rare these days. Since there are so many other options and more info keeps coming out about splenectomies, doctors and patients are hesitant to do them much. They often don't work and when they do, the success rate can fall over time.

I hope your daughter gets well soon.

I truly do wish we would of waited. But we trusted the doctor.
her platelettes dropped to 5 last night. So they requested to do a platelette transfusion right away.
with being in the middle of this crazy stress, in the hospital, we so feel that we need to trust what they are telling us. But more and more I read, i wish I could reverse it all and turn the clock back.
the transfusion only took her to 14...then prednisone took her to 17, and then tonight back down to 13. Needless to say, i want her home with us asap. She is a toughie...but tonight she did have her melt down. while looking at her belly, she just started to cry. Broke my heart into a million pieces.

Sandi~ you seen to have a ton of knowledge. How do I find which direction to go, to have a 2nd opinion from another doctor. Like i said, the doctor we have now, is on the PSDA list....but I really would love to talk to another before we decide on the Nplates or not. We live in FL, but would be willing to travel is needed. I know I have had others tell me that some doctors will do a 2nd opinion if records are sent to them.
thanks for any insight of how to find a truly good place.

You just have to trust that you did what you thought was best. Don't second guess yourself....move forward. How are your daughter's symptoms? Transfusions do not have to be given based on counts alone. They won't do much good.

I don't know much about doctors, but some people here have seen Dr. McCrae at the Cleveland Clinic and they love him. If anyone else has a suggestion, please let Kcjkoehler know!

Kcjkoehler, where in Florida are you?
I'm in Florida, as well, and might be able to give you some advice depending on the part of the state.

HI MatthewR,

thank you so much for the offer of help. We live on west side. sarasota/tampa