Advice For Parents From A "Child" With ITP

I've been lurking on the parent boards and keep up with the chatter on Facebook. Unfortunately for ITP kids, many are too young to really be able to speak up for themselves.

I'm a 28 year old "child" (as of today, woohoo) and my parents have been with me every step of the way since being diagnosed on May 1st of this year. I watched them struggle to understand ITP, treatment options, caregiving and how to react to me in light of being diagnosed. I wanted to share with you all what I have told my parents. I created some "guidelines" for them to assist me in coping with ITP.

1. Know the enemy- ITP is a complex autoimmune disease that has multiple potential triggers. Some ITP patients will never know what triggered it and others will. Please accept the reality that chances are you will never know that *exact* moment that triggered the immune system to go haywire. Acceptance of ITP as a whole (instead of focusing/obsessing over the cause) will help your child. On the same token, don't second guess yourself because your child has ITP because of a medication, vaccine, virus or toxin exposure. Unfortunately, life isn't fair. All you can do now is assist your child in making the most out of life while managing ITP!

2. Keep a doctor "cheat sheet"- Make sure you have the names and telephone numbers of every doctor your child sees. The hematologist isn't going to cut it, it takes more than one type of doctor to treat healthy people, never mind ITP patients! Pediatric doctors, dentists, orthodontists, therapists, etc. Type up a list of those doctors, any medications your child is on, allergies, surgical procedures and past treatments for ITP. Keep a copy in your wallet, give copies to school teachers, after school counselors, baby sitters, parents of your child's friends, etc. In the event of an emergency, these numbers are beyond valuable! Don't just rely on a medical alert bracelet or your child to give the information. Even at 28, my parents still have this! Heaven forbid something happens to me and I am not able to speak for myself, I have to make sure my advocates can speak for me.

3. Educate yourself- I am amazed at the amount of misinformation about ITP. Namely- alternative treatments. I understand how stressful it is to watch your child suffer from something that doctors know so little about and has no cure. However, no matter how desperate you are, please, please, PLEASE discuss any and ALL potential alternative treatments with your child's doctors (notice that is plural, everyone should be working as a team). Don't be quick to jump on the next vitamin craze or juicing mix. You never know if that will harm your child. Also, some children with "ITP" end up having something else, so this poses more risks, which brings me to my next point...

4. Question the doctors- I went through 3 hematologists in the hospital, then when I got out I found a 4th one. My mother researched hematologists that specialized in platelet disorders. Had we just stuck with the hematologist I ended up with at the hospital, I was most likely going to be spleen-less and I never would have had all the testing done to discover the root of my ITP and clear me of any other potential causes of low platelets. I cannot stress this enough, NEVER TAKE WHAT A DOCTOR SAYS AT FACE VALUE. Make sure you have done your research as well. Splenenectomy for example, doesn't work 100% of the time. If your child's doctor is pushing this (after all, surgery makes big bucks for doctors) and not making you aware of the small success rate, you should reconsider your child's care. Never be afraid to get a second opinion.

Last but not least:

5. Embrace your role as an advocate- You are your child's advocate, even if they are 28 like me! Until your child becomes old enough to truly understand and manage ITP with their doctors, it is up to you to protect and guide them. The resources provided by PDSA and fellow ITP patients and caregivers are invaluable. Never be afraid to reach out for support and ask questions. Becoming your child's advocate is no easy task, it is mentally and emotionally consuming. However, until we have a cure for ITP, the best we can do is manage the disorder.

Thank you sooo much...My Daughter thats 7 has had itp for a little over a year they told me that at the year mark that we would have to consider having her spleen removed But i prefer not to do that just yet..So now i am considering taking her for another doctor..This will be only the 3rd hemo. doc she has seen sence we where told she has ITP..Im glad i made a acc for here cause u have helped me to see beond what has caused this and start looking at other options for her to make this a little better for her...so thank u from me and my daughter Shealia...

Reaching the one year mark has nothing to do with having to have a spleen removed. They consider that the 'chronic' stage, but all that means is that she's had ITP longer than a year. I have seen many, many children go into remission years after being considered chronic. Most of them still have their spleens.

Watching and waiting is a valid option for children depending on symptoms. Hopefully, you have a doctor that does not focus on numbers, but looks at symptoms instead.