Splenectomy

My son's doctor is suggesting a splenectomy he is 11.5 years old, I am not sure this is the course to take. Any one tried this and what are the pros and cons? My mother and sister had splenectomies as adults and had good results. He was diagnosed 2.5 years ago and tried, IVIG twice, Whin Rho, and large and small doses of prednisone. The first dose was 100mg/day and tapered slowly. His counts were stable for several months and then declined, he did smaller pulse doses 20-60mg for five days and they would rise for shorter durations. Eventually not working much at all. Last fall he did four treatments of Rituxan and the results were gradual, but he stayed healthy until last month. But he had a good time, he played basketball, baseball, and water sports. Most of all he was able to be a kid and not worry, just play. Three weeks ago he was at 165,000, and a week later 47,000, and another week 30,000. He had scout camp this week so we tried Pred once again 60mg for five days. Yesterday he was at 328,000. I do not know what to expect about duration, trying to be optimistic since he has not had any prednisone in 8 months. I know there are many treatments we have not tried, our doctors are reluctant. We asked for Rituxan, and they did not refuse. I am confident we have a great group of Doctors but want to be informed. One important piece is his MPV is normal since Rituxan, and he is not a bleeder. Please share your experiences.

www.pdsa.org/forum/14-social-chat-for-parents/22606-removal-of-slpeen.html

Hi,

I`ve thought about this option and rejected it (for now) for my 13 year old son. I remember someone asking about it a while back and I wrote down my "decision tree". I`ve put the link above if you are interested. I think that the little girl in question did end up having a splenectomy.

Ali

KFS:

The top ITP experts are starting to suggest that splenectomies not be performed for ITP anymore. It is slowly becoming a treatment of the past, although it will take many years for that info to trickle down.

I'd be very leery of having that surgery for my child. They are starting to link splenectomies with blood clotting problems.

I refused a Splenectomy between my 2 rounds of Rituxian treatments. Glad I did.

Thank you. my concerns are in line with yours. We have discussed his condition and family history with doctors around the USA, their opinions are split 50/50. I like to have as much information I can when making these decisions.

I was not aware of the blood clotting issues, will have to search that furher. We have consulted physicians across the USA and the consensus is divided evenly, considering our family history. Thank you for your input.

If you do not mind sharing, what were the results of the Rituxan, and how far apart were your treatments? I would consider another round, he had minimal side effects.

Evidence now shows that ITP on its own seems to put people at a greater risk of clotting, add a splenectomy to that and the chances are even greater.

Here are a few articles to get you started:

www.ncbi.nlm.nih.gov/pmc/articles/PMC2756197/

bloodjournal.hematologylibrary.org/content/114/14/2861.full

I have a hard time believing how many people, even young people, have had blood clots or strokes after having a splenectomy.

Your Mom and sister have ITP? Has your family ever been tested for familial types?

kfs wrote: If you do not mind sharing, what were the results of the Rituxan, and how far apart were your treatments? I would consider another round, he had minimal side effects.

I was discouraged with the first round of treatments as I did not respond as I was hoping. Response was slow with ups and downs. Believe I got up into the 250k range for a bit, then dropped into the 150k range, then slowly started dropping until another round of Rituxian was ordered, 16 months after the last treatment. I did react to the first treatment of the second round. Shortness of breath, tightness in chest, chills, shaking. Dose was stopped and Meds given to stop reaction. Treatment was resumed at a slower rate with no further reactions. I had a better response to the treatment the second time. Counts went as high as 350k. Now I have stabilized in the 160-200k range. Going on 3 years now. Due to my issue with insurance covering the second round, I always remind people to check with their insurance when considering Rituxian. Good Luck!!!

No one has been tested, what is involved in the tests? What should I ask my Dr for? She did an extensive question period about family history, and feels there is a connection but did not check for anything specific that I am aware. But the first few weeks after his diagnosis are a blur. Do you know anything about Italian decent, I know it is common to be anemic? Thanks for your wealth of information. I like as much info as I can handle, but online I do not understand everything I read, I need it in simple terms.

Familial ITP:

www.pdsa.org/about-itp/and-families.html

www.pdsa.org/resources/other-platelet-disorders.html?layout=item