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TOPIC: Son with ITP

Son with ITP 8 years 10 months ago #8537

  • AlaskaCat
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Hello, We just found out that our 18 year old son has ITP and the doctor wants to do a splenectomy. Do we have other choices? Are there other treatment options out there?
Will he always have this disorder? I have more questions than answers and I am feeling very overwhelmed right now.
I would appreciate any input you have to offer.
To all of the parents who have to deal with this as well as to the people who actually have the disorder, my prayers are with you.
I never heard of ITP until last week and I have to tell you it has me very concerned.
Warmest Regards
Jackie :(

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Re:Son with ITP 8 years 10 months ago #8540

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Hello Jackie. Welcome to the boards. First take a deep breath! It's gonna be alright. There are many, many other options out there. I think in most ITP patients minds splenectomy is at the very end of the list of options! You have to read all you can here at this site and search the web too. What kind of doctor is your son seeing? I've never heard of a hematologist or ITP specialist using this as a first treatment. Which is exactly what a splenectomy is, a treatment. There is no cure for ITP, only management. Is your son showing symptoms? ie bleeding/bruising?
ok, again, deep breath and start researching! There are many of us here to help you in any way we can. :)
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:Son with ITP 8 years 10 months ago #8541

  • AlaskaCat
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Thank you for replying to my post.
The reason I joined the forum is because after hearing what the doc had to say, my first response was....ok, it's time to begin our own research and get a second opinion.
The doctor we are seeing is a hematologist, so I am at a loss for words as to why he would suggest a splenectomy as the first option? He said it was very rare for a re-occurance after the surgery, but there wasn't any quarantee. Sorry doc, that's not good enough for me at this time.
I live outside of Atlanta, so I will begin there with looking for another doctor asap.
I have read that some people manage ITP with natural remedies? Once again, this is all new to us and we are looking into everything at this time.
Thank you for your support and advice.
:)

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Re:Son with ITP 8 years 10 months ago #8564

  • Angelalogin
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Hi Jackie, my son is relatively new to ITP too. He's only ten, but I know how scary it is and frustrating! There have been many a hem docs that we've wanted to slap around for a while. We went through two treatment options that didn't work, and then the one doc told us that splenectomy was where we were headed...well I did some research and low and behold had another doc agree with my findings and say that my son is not even a candidate for the surgery because he's a heart transplant patient as well, and he's already missing the better part of his immune system so he dosn't reject his heart. 4 different docs have all told us different things, but this site sure shed some light on other options. Also the hem's hate you Googling stuff, but its out there, look stuff up. I Googled everything (don't necessarily mean its right) but you can take the common denominators and make a descision.) We're still in the scared nervous stage too, but with this site, I feel muuuuuuuuuuuuuuuch better!!!! Read on and you'll be okay too.
All the best for you and your son
Angela

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Re:Son with ITP 8 years 10 months ago #8570

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Angela - I'm so glad you said that - that your son wouldn't be a good candidate for splenectomy because of his transplant. That was going to be the first thing I said to you. That doctor is right!

Jackie - get another opinion. You found a spleen-happy doctor...lose him. Recurrences happen more often than he thinks and sometimes the surgery result is very short lived or there are no positive results at all. Save that for later down the road when other options have been tried. You may want to post in the adult section since your son is technically an adult.

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Re:Son with ITP 8 years 10 months ago #8579

  • jaycharness
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As you can all see by reading all the posts, the tricky part of ITP is that all kids are different and will react differently to treatments etc. That not only makes it tricky, but also very frustrating. While I am no Doctor, I am always a little apprehensive when a Doctor wants to do a splenectomy immediately. Considering it is considered acute for 6-12 months (depending on the doctor you talk with) I am not a fan of doing something so permanent. I have seen examples of patients who have gone this route so it is not like it never happens, it just seems rare. I can speak from experience because we did end up taking out our daughters spleen (she was 7 and had ITP for 3-1/2 years). I was one of those parents who said you will NEVER take out my child's spleen. No matter what anyone said, I kind of figured that if it was put in your body, it was probably there for a reason. Like most people dealing with this condition, things change, decisions change and philosophies change. In our case, our daughter was a bleeder and nothing was working so it was kind of a last ditch effort. While we still struggle with ITP 2-1/2 years later, it is much more manageable and is being done without much in the way of treatments. Is that because of removing her spleen, or is her body just dealing with it better? Who knows. What I can tell you is that a lot of the decisions that have to be made must be done with a combination of good medical advice and a lot of instincts.

Please continue to use this forum, it will help.

Stay well,

JJ

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Re:Son with ITP 8 years 10 months ago #8596

  • AlaskaCat
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Thank you for all of your input, it has helped me a lot and reassured me.
We are currently looking into second opinions and I am in the process of sending all of my son's lab work to an ITP specialist @ Scottish Rite hospital in Atlanta.

I can't believe how fast this came on. One day he was fine and the next he looked like a dalmation. (not trying to make fun, but geesh, it was scary)

I didn't think about the posting on the adult board since he is 18. He is my youngest and I just think of him as my "Baby" lol He says he doesn't care where I post as long as I get information that doesn't freak him out ha ha
As you can see we are in a lighter mood today and are going forward with a more positive attitude from now on. I am sure we are still in for some frustrating times, but now we are armed with better information and an ITP forum :)
Once again....All of you who have dealt with ITP on longer terms, my heart, thoughts and prayers are with you!
Jackie

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Re:Son with ITP 8 years 10 months ago #8609

  • Angelalogin
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Hi Jackie, Im so glad you're getting a second opinion. And also that you found this forum! Im thankful too. We dealt with ITP for two frustrating months until I found this site, and I was very solumn and not very hopeful until I found this site. Now I also have a more positive attitude. I don't think that age counts when dealing with this thing, and your children will always be your children no matter how old they are! You're a good mom, our thoughts and prayers are with you too. Your son has a good advocate in you!!!!!!!!
Cheers,
Angela

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Re:Son with ITP 8 years 10 months ago #8620

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Jackie - The reason you'd want to post on the adult side is that ITP in children is different than ITP in adults. My 21 year old son is my baby too.

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Re:Son with ITP 8 years 10 months ago #8643

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Also, not all adults with ITP read the childrens threads, so if u post in the adults section, you may get more responses from people as well
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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