Monday, May 23, 2011

What I have learned about ITP so far...

Since The Princess was diagnosed with ITP in April, I have received many questions about the disease. I have learned A LOT in the short 4 weeks since her diagnosis. I thought I would put together a post here all about ITP and what I have learned so far. If you have any other questions after this post, please ask away!

Starting with some internet facts, the following is copied from ITP Kids...

What is ITP?

ITP stands for Immune (also referred to as idiopathic) Thrombocytopenic (a decreased platelet number) Purpura (purplish areas of skin and mucous membranes).
You may also hear the term "Idiopathic" Thrombocytopenic Purpura which means the cause of the low platelets is unknown.
ITP occurs when a person makes antiplatelet antibodies which attach to his/her own platelets. The antibodies cause the immune system to destroy the platelets. This results in a decrease in the platelet count.

(My note: Yep, it is autoimmune, like Diabetes)

What are platelets?

Platelets are the blood cells that help form clots to stop bleeding. A blood test is done to count the number of platelets you /your child has.

A normal platelet count is higher than 150,000/mm3.Hematologists generally agree that platelet counts: higher than 100,000/mm3 are always safe, higher than 30,000/mm3 are nearly always safe, and lower than 10,000/mm3 may be associated with an increased risk of bleeding.

(My note: The Princess had counts of 6,000 and 2,000 the week of her dx and 12,000 this past week)

Why would you treat ITP?

The main reason to treat ITP is to keep you/your child's platelet count in a safe range so that the risk of bleeding is minimized. Platelet counts lower than 10,000 may increase the risk of bleeding. Therapy temporarily raises the platelet count to minimize the bleeding risk.

(My note: We choose to treat because The Princess is a VERY active toddler and would have a greater risk of bleeding should an injury occur)

And now what I have learned so far...

The treatment options WE are offered from our doctor as options to treat The Princess.

1) Observation...This would just be a watch and wait approach. Weekly blood checks and decisions based on the count each week.

2) Steroids...We could put The Princess on steroids to increase platelets while she is taking them. There are two problems with steroids though (mainly)...1) Steroids can have some yucky long-term effects and 2) The Princess is a complete MONSTER on steroids, and I just can't do that to her.

3) IVIG...This is a transfusion given over several hours of part of the plasma from a donor. As we know, side effects can be nasty and include headache, vomiting, nausea, fever, and could include kidney failure. (The Princess experienced most of these on her first round; we pre-medicated the second time around and have avoided these side effects) This treatment works in about 80-85% of the patients treated to temporarily raise platelets. This treatment can last from 2-4 weeks before platelets would drop again. It appears it lasted about 2 1/2 weeks for The Princess from her first treatment.

4) WinRho...This is another treatment given via transfusion over about 30-60 minutes and for our clinic would require us to stay the entire day (7:30am-4:30pm or so) due to the possible side effect of developing severe anemia. We were told this treatment works in about 80-85% of patients to raise platelets temporarily. We have thought about this one, but the idea of possible anemia scares the crap our of me (would mean a blood transfusion on top of everything else) and it may not even work.

5) Splenectomy...Removal of the spleen is an option patients who have had ITP for a long time might consider. This will not work for everyone and the risk of infection down the road is greater.

The fact is the platelets are low. Any "treatment" that would raise platelets would be temporary until the body stops attacking itself at some point. The treatments are seen as a bandaid and only last a few weeks at a time.

At this time, The Princess is considered to have "acute ITP". This means she has had ITP for less than 6 months.

If she still has ITP after 6 months it will be considered "chronic ITP". I have been told that 80% of kids will go into remission within 6 months. I am still praying and holding out hope that happens, and sooner than 6 months would be fantastic.

And lastly, for now, I want you to all know that I am doing my best to get through the dx of another autoimmune disease, and let me tell you this SUCKS.

I am constantly worried about her platelets being too low. I cry every time I think about all her bruises. And the fact that just by touching her we are causing some/a lot of them. I cry every time she gets lab work and has to be poked. I cry every time they have had to put an IV in, blow her veins, and have to keep repeating until they actually get it in. The night before her first IVIG I cried the whole night and the whole next morning. I was seriously scared of the unknown. The second round of IVIG this week, I knew mostly what to expect and I still woke up in the middle of the night and cried my eyes out. I hate that my baby has to go through this. It just plain sucks.

Yes, of course I am grateful it is not something like leukemia or cancer, but it still sucks.

The only reason I am surviving this right now is all of the love and support from my family and friends. The comments and concern shown for me and my Princess help me be ok with it. You all help me get through each doctor appointment and each transfusion.

The appointments and treatments already seem to feel like they are part of our routine and no big deal, even though they really are. I feel like we are living our lives 3 weeks at a time. And while I hope we don't have to do ANY more treatments, I am also trying not to get my hopes up. If we have to endure this for several months, I need to be ok with it, or I will just fall apart.

I have to add, SHE makes it all worth it too...

*Disclaimer: I am a mom of a T1 Diabetic child. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*


Misty said...

So sorry that you all are having to go through this. I am sure you that will be strong for your daughter.Love and prayers..

Lorraine of "This is Caleb..." said...

I am so sorry that you have had to become an expert in this. Thank you for educating us all. Praying for remission with you.

Reyna said...

Wow, what a great piece educating people about ITP Tracy. I think about you and your beautiful girl all the time...I am hoping for a remission soon my friend.

Amy said...

I may not know much about ITP ( or, I didn't before your awschum definition and description) but I DO know how fabulous you are and what a great Mom Princess and the Superhero have! Crying is normal. Being able to blog and ask for prayers are akin to greatness. You are doing a fantastic job, Tracy. As I said before, you are an inspiration to all of us by showing your strength and grace.

Will pray for remission!!!

Jules said...

I think your daughter is just so sweet, and yes they make it all worth it, right?

busymom said...

Bless your heart-praying for Princess' remission too. I'd hate for it to be bumped to chronic too. Just prayers. : ) Hugs, Holly

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