spleen removal vs rituximab??

Trent has gone 8 weeks without any treatments!!!! We are so excited about that...but it is ball season and his Dr advised. against him playing this year I have been contemplating the splenectomy here lately and wonder how other peoples children did with it. We will try rituximab this summer but I don't have high hopes for remission with rituximab.

Morgan

Morgan - how old is he?

Personally I am not a beliver in Spleen removal. Splenectomy to me is old school. It was first started in 1913 when there was no other treatment option! Now there are more options. The most common reason for a Splenectomy is, enlarged Spleen, damaged Spleen and some blood disorders. I do not feel ITP is a reason for Spleen removal. The Spleen is a blood filer and helps the body fight infections. Once the Spleen is removed, there is no replacing it. Without a Spleen one is at a greater risk for serious or life threatning illness. I feel ITP is triggered by a viral illness. Antibodies attach to Platelets and when passing through the Spleen, the affected Platelets are destroyed as the Spleen sees the Platelets as a danger to the body. So the Spleen is actually doing it's job. How long has your son had ITP and what are his counts? Any treatment has it's risks. Either side affects from Meds or complications from a Splenectomy. He may respond to a Splenectomy initially but there is a good chance ITP may return and his body will have to fight it without a Spleen.
I have had two Rituxan treatments. First lasted 16 months. Second is over 2 years now.
ITP is a difficult issue to deal with, especially in childern/teens as they can be quite active.
Whatever you decide to do, I wish the best.

Sandie he is 5.
Dean we will be trying rituximab over the summer and I pray every day it works. Without any treatment at all he pretty much stays in the 20s. I know that's not a bad number, but considering his age and activity level, it makes me very nervous. He is all boy and wants to play every contact sport out there, but he can't and I want him to be able to do things that other kids are doing. How high do you counts get after rituximab?

Oh and he has had ITP since June of 2010.

Hi Morgan

What happens to your son when his counts get into the 20s? Is it necessary to treat because he bleeds, or do you just treat when he reaches a certain number as a precaution?

The UK has a different approach to children with ITP, but my very sporty and active 13 year old son's counts have been between 0 and 20 for the last year (and mostly for the last 3 years) without any really adverse events. Children here don't get treated unless it is absolutely necessary, and he hasn't come to any harm though it. Watch and wait works for us.

Lots of kids seem to eventually grow out of ITP whether it takes a couple of months or a number of years. I've always thought that, this being the case, sacrificing a working body part in a child seems a bit previous? I know its difficult living with it in the meantime though, and I guess it comes down to a really thorough weigh-up of the pros and cons in each individual case.

I've only read about one kid in the last two years who had a splenectomy, and as far as I know, she is doing well - her mum's login was something like XRAY001, you could look in the list of members?

Good luck anyway

Ali

Ali, when we first started this ITP journey he would get nosebleeds and pretty bad bruises when he was in the 40s but as time has gone on, his body, I assume, is adjusting to the ITP. He only gets nosebleeds when his allergies are bothering him and his bruising had gotten better, in my opinion. He still constantly has bruises on his arms and legs but what 5 year old boy doesn't.
I have gotten comfortable with his counts being in the 30s which is where he has been for the past couple of weeks. His Dr will only treat if he is below 20 unless he is having severe nosebleeds or something else significant. I guess that is what everyone considers " wait and see".

"Watch and wait" for my son involves not treating unless he has bleeding which will not otherwise stop - he doesn't get treated even at a count of 1. My comfort level is something else entirely!

Morgan:

Why wait until summer to do Rituxan? If he responds, he could play ball since he wants to do that. Counts can become normal after Rituxan. Some people have a great response and have normal counts over 200k that can last for quite a while.

Splenectomy is pretty drastic for a 5 year old. He's really young and could still remit on his own. I'm surprised it's even been suggested at his age and with his counts.

I agree with Sandi!!

With him being in school this year, and his Dr being more than 90 miles from us, we would have to have him out of school 4 or 5 days in as many weeks. He has been doing IVIg and it works so we decided to stick with that until summer. He already misses enough school as it is and I don't want to add to that if I don't have to. I am anxious to see how this new treatment will work for him, but he gets horrible serum sickness for the full 48 hours after IVIg and I am worried about that with rituximab

I do not think I would continue that treatment if he is getting horrible serum sickness! That does not mean he will have the same reaction to Rituxan. We all react differently to various Meds. Maybe just play the "wait and see" game. Who knows he might respond on his own. His body is still developing.

I think I'd question that it's serum sickness that he is getting from IVIG. If a person has serum sickness as a reaction to a drug, repeated exposures to the same drug can cause death. I would hope his doctors would know that. What are his symptoms?

I actually chose Rituxan over IVIG since the work time missed was less in the long run. Four days that year for Rituxan as opposed to ? days for IVIG and the bad reaction. After Rituxan, I was okay for work the next day. I did get serum sickness from Rituxan (twice because it was misdiagnosed the first time) and would never want to go through that again. Most people do not have that reaction...it's rare.

He gets migranes, fever, & vomiting. I haven't considered trying anything else right now Bc he responds very well to the ivig. His counts are normally in the mid to upper 200s a week after and 300s by week 2.

That's not serum sickness. That is either aseptic meningitis or just a bad reaction. That is common after IVIG. Do they use pre-meds? Poor kid!

The most notable symptom with serum sickness is painful, swollen joints. You can't move.

Okay then he doesn't get serum sickness. They pretreat with tylenol and iv benadryl. I have heard his headaches may be due to lack of hydration but he stays well hydrated and still has the same side effects. The actual treatment itself goes fine. He never has any problems until the next day. We always have treatments done on Fridays so that we can be home with him on the weekends to deal with all the side effects. Thanks for letting me know its not serum sickness!

Here's the difference:


Serum Sickness:

Symptoms
•
Fever
General ill feeling
Hives
Itching
Joint pain
Rash
Swollen lymph nodes

If the drug or antiserum that caused serum sickness is used again in the future, your risk of having another similar reaction is quite high.

Complications include:
•
Anaphylactic shock, an immediate, life-threatening reaction
Inflammation of the blood vessels
Swelling of the face, arms, and legs

Certain medications (such as penicillin, cefaclor, and sulfa) can cause a similar reaction. Unlike other drug allergies, which occur very soon after receiving the medication again, serum sickness develops 7 - 21 days after the first exposure to a medication.

www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001823/


IVIG Side effects:

What are the common side effects OF IVIG?

IVIg at times causes patients to get a headache, which is more common in females with a history of Migraines. after IVIg infusion some Patients may experience fatigue similar to getting a Flu, which is due to antibodies interaction. IVIg may also cause to patients get a rash and doctors recommended they take Benadryl or even steroids to avoid this. Remember their are a lot of antibodies and some may result in odd reactions. Kidney failure may result after IVIg if less fluids are given. Stroke or heart attack can happen after IVIg if the IVIg solution is pumped in at a fast rate.

A severe headache with a stiff neck after IVIg may be due to aseptic meningitis.

Variation in blood pressure, shortness of breath, back pain can also be seen after IVIg infusion. Serious conditions like encephalitis, myocarditis have been seen.

www.cidpusa.org/ivig.html

mparshall wrote: With him being in school this year, and his Dr being more than 90 miles from us, we would have to have him out of school 4 or 5 days in as many weeks. He has been doing IVIg and it works so we decided to stick with that until summer. He already misses enough school as it is and I don't want to add to that if I don't have to. I am anxious to see how this new treatment will work for him, but he gets horrible serum sickness for the full 48 hours after IVIg and I am worried about that with rituximab

I am not advocating for rituxan, I just want to point out that it doesn't HAVE to be given over 4 weeks. There is some research (not a ton, but some) that a single treatment of rituxan can work as well as 4 treatments. The 4 treatment schedule was created for NHL, and doctors often just do what they know.

I will ask his Dr about that. Thanks!

My son is now 17 and has had ITP since he was 5, we did not remove his spleen because we did a test that showed 45% of his platelets were being killed in his liver so if we removed his spleen the liver would just take over. Worth remembering.
We gave Xavier a single dose of rituximab (mabthera) when he was 12 and he had a very good result, he has had dips since then but basically maintains a range anywhere from about 50 to 100. This has meant he could do just about anything, in football (Australian rules) season we do regular blood tests if he is close to 50, but otherwise he is fine. If he had sustained low counts again we would do another dose or up to 4 now he is older.

Australia and UK have very similar watch and wait protocols,

good luck,

Trish

Please do not consider the spleen removal on your 5 yrs old son...I agree it is a old treatment that is mostly used for elder people who´s spleen is accumulating the platelets...in children the process is quite different...I am quite sure my 13 yrs old daugter got ITP as a reaction to ibuprofen in april last year...I would suggest you trying natural products such as Omniplus...it has worked perfectly to my daughter...her platelets count went from 17000 to 273000 in two weeks...now she is off medication (prednisone) and taking vitamins these vitamins (omniplus from omnilife).

Best luck for you and your child!