Splenectomy- What happens if it doesn't work?

My daughter Riley was diagnosed with ITP in March. We have tried EVERYTHING out there- even some experimental medications and combinations as well. NOTHING has helped. She has always had a platelet count of under 5,000 (undetectable). The highest our counts have ever gotten were 42,000 and that was after IVIG infusions- but it only lasted in her system for 3 days. We are now planning her splenectomy which obviously scares me- she is 5! They tell me there is a 75% chance that this will cure her and even though 75% is good- there is still a chance for failure. Has anyone else had the splenectomy and NOT been successful? If so- what have you done since to helped? Has anyone had the splenectomy and had immediate success?

Well, I would not promote this for my son, but that being said, its a very individual decision that only you can make, based on symptoms, lifestyle, risks etc. There are definitely kids (and adults) that it doesn't work for, either immediately or in the longer term, but it works immediately for others.

The argument that convinces me most is, if you remove your spleen you are immuno-compromised anyway, but if it doesn't work and you need to go on other immunosuppressants then you end up potentially very compromised. I came up with a long list of reasons/questions once for myself, but I wrote them down for another parent a while back.

www.pdsa.org/forum/14-social-chat-for-parents/22606-removal-of-slpeen.html#22648

Another thing to consider is the very short period of time that your daughter has been diagnosed - about 1 in every 4 children who haven't recovered by 6 months, get better between 6 months and a year. Children recover all the time - my son is unexpectedly enjoying a period of good counts after over 18 months of counts below 15. It does happen!

What happens if you do nothing about your daughters count? Is watch and wait a viable option in terms of symptoms, because if it is, then it is probably the best one long term for your daughter's health.

Good luck with your decision

Ali

Hello
Sorry to hear about your daughter. Is she an active bleeder? March? as in March 2012? Are YOU comfortable with taking her spleen so soon? There is still a great chance she will get better on her own!! I do not know her story, or what her symptoms are I am not trying to push you into or out of anything.

They suggested taking my little man's spleen also. I so far haven't allowed it. They say IVIG works (temp) but works 90% of the time, Win-Rho was something like 85% Steroids were also up there.. Highest my son ever got was 24!! So I wasn't about to take his spllen with LESS of a chance to have that fail and not be able to replace it.

I am sorry...You didn't ask how we felt you asked something different so I will stop, because again I am not trying to make up your mind!! I just hope YOU are comfortable, DO NOT let the dr's push you into anything!! When all this first happened to my baby, they could of put anything into him, I didn't question it, I just wanted him better...Sadly sometimes treatment is worse than ITP itself, thank god I have such great dr's who agree with that!!


Take care and best of luck to your daughter!!

Crystal,

I can't believe a doctor would suggest a splenectomy for your son - he is so young! Wow, thats awful.

In the UK, they hardly ever do splenectomies for children, and they really try to avoid them for children under 5 because their immune systems are not fully developed. I don't think a doctor here would ever suggest a splenectomy for a young child unless they had REALLY serious bleeding problems and were resistant to all other drugs.

Sometimes I am pleased I live here!!

Ali

Ali

I KNOW!!! He had only been sick 3 weeks!! He was in the hospital for those 3 weeks, he had symptoms but wasn't bleeding internally or anything. His age (17 months) and such a low count they just were not comfortable not treating.

One of his dr's came in and told us to ask around he could guarantee we could find atleast one person who doesn't have their spleen. He said people lose them all the time due to car accidents and such and that we would "just have to keep up on all his shots for the rest of his life"... They also said Yes it would work because without the spleen they wouldn't be destroyed so the antibody would still attach but the spleen wouldn't be able to destroy them... They made it sound like NO BIG DEAL...

Wow, Crystal. That amazes me. I don't know he could have said 'no big deal' for a child so young. Yes, people survive without spleens, but people with autoimmune disorders are different and should not be compared to the general population.

I do like the UK way of thinking, Alison. My daughter has Graves and in the US, they push radiating and killing the thyroid. In the UK, they do not, especially in young women. After a LOT of research, we decided to go with what they think in the UK. Seems like the US likes to dispose of body parts.

Sorry to hear about that Ali.
I have had my spleen taken out three times. I had what are called accessory spleens. My first surgery was in 2001 when I was 19 years old. Since then I have had a really hard time fighting off strep and ear infections. In fact I couldn't remember the last time I had an ear infection before my spleen was gutted out of me . One of the ear infections got so bad the infection started to eat away at my bone inside my head and my head was swelling up, I was hospitalized for 4 days. The next time I got sick doctors put a PIC line in me (which is an extra long IV that just stays inside your neck threaded to a major vein) and was sent home with IV antibiotics that my husband had to infuse in me at midnight for a week streight. Having gone through that and then finding out I still have functioning spleens still in my body 10 years later I wish I had had more options.
This is a very personal decision I think where you have to weight the pros and cons. I hope this helped. Good luck