My 11 year old has ITP

My sweet 11 year old daughter was diagnosed with ITP. I cannot tell you the range of emotions we have experienced. But I have a feeling many of you can empathize. Our initial response to her low platelet count and bruising and petechia was thank God It's not cancer. Then the next response was anger that there is no "lets get this thing done and irradicated" treatment. We are in the hematology/oncology clinic 2-3 times a week. She is hospitalized for IVIG every 10-14 days. They are pretty sure that she has lupus, but cannot give a definitive answer on that because it is a clinical diagnosis. She has had several positive ANAs. But won't say 100%. We are on a constant emotional rollercoaster and it has only been a little over 2 months. She is of the age and the way she is responding, or lack of responding, to dif. meds that they are sure it is of the chronic form.
She is being scheduled for a port next week. Her veins are tired. It is now taking hours to find one.
I think I am struggling more than she is. Or maybe she is just quiet about it. She smiles and sweetly tells everyone she is fine. I know it is hard on her. Most of her friends now are from the clinic and have cancer. Her other friends really don't understand. But the hard part of being in the clnic so much is that she doesn't have cancer. We are praising God for that!! BUT, she is seeing the things they get, the gifts, the treats, the trips, the camps and she does not get the same thing. It sure is hard to explain to a child, well, you are not THAT sick. I don't want to walk their journey, but it's still so very hard right now.
So, Anyway, I would like to hear from other parents. Symptoms, journey, treatments, Insurance. All of it.
THanks in advance, It is nice to know we are not alone.

I'm sorry you had to join the group, but you will be glad that you did. There is a lot of current, up to date info here.

You might find these articles helpful.

www.pdsa.org/forum-sp-534/12-newly-diagnosed/27819-managing-itp-in-children-update-12-4-14.html

I am sorry you have a reason to be here, but you will find this site helpful. My daughter was 12 when diagnosed, and was eventually deemed chronic. (They did that at six months at that time. Now, I think it's a year.) We knew, as a female of that age, that this may be a permanent issue. She went into remission, however, around eighteen months after it started. Her counts rose to safe, but not normal, levels, and then gradually higher to normal. She still has drops from time to time, but, so far, still within normal. She is proof it can happen.

How are your daughter's counts? And, is she symptomatic? (Bleeding, bruising, etc.) That really should determine the treatment plan. Our daughter was initially treated for a count below 20, and then for a count of 3. She did fine with counts in the teens, and the plan became to treat only if the count was below 10 or she was bleeding. She had her third, and last (so far) IVIG treatment for a nonstop high-volume nosebleed. Mostly, we watched and waited, and kept her safe by avoiding certain activities at lower counts. We also encouraged good nutrition, safe exercise, and sufficient sleep, so she could better handle any viruses that came her way. (She tended to have lower counts when fighting colds and tummy bugs.) She took some extra vitamin C (capsule, not chewables, which were too tart), which seemed to help with bruising and nosebleeds. (It won't raise counts, but is said to help with vessel integrity.) She had to go on the pill at 13, to manage periods. She could handle mild tennis (no diving for the corners) when she was 30 and higher. Once the counts were in a safer range, she resumed volleyball.

She is a lovely healthy 21-year-old now. We don't really know what, if anything, caused her remission, but we are grateful. The remission started after a strange illness, probably picked up on school travel, for which she was treated with doxycycline. That part is probably just coincidental. She still gets nosebleeds at times, but so did her father as a young man. She gets a CBC occasionally, if she's having nosebleeds or feeling fatigued, but they are always normal. We know there is a risk of this returning during or after pregnancy, so, if and when that occurs, she'll need some special watching.

This can turn around on its own, or not. Meanwhile, for most patients, it can be managed with little or no treatment, or occasional treatment to manage symptoms or prepare for surgeries. What to do should depend on how your daughter's body handles ITP. You obviously have a hematologist/oncologist, but be sure he/she is skilled and experienced with ITP, as many are more focused on cancer. We had superb doctors caring for our daughter, for whom we are eternally grateful.

Sorry for the long post, but wanted you to know I have been there, this can be managed, and remission is possible, even after it is deemed chronic.

Norma

wheenever i read story like yours i can't help myself. so here i go again. i was in your shoes 9 years ago, and after a year of prednisone we so the light. your daughter doesn't have a deficiency of medications, those are not going to help in the long run. find a alternative integrative doctor.

Thanks for the replies. My daughter has had prednisone but it didn't effect her counts at all. She then did high doses of detramexizone (I'm sure that's spelled wrong) but a steroid. She only had a little climb with that and side effects were awful. So far only IVIG is allowing counts to increase. She will drop to 7 within 2 weeks after IVIG. we have had IVIG every 2 weeks since May. So I think we are on 6 now. I like our Hemoc drs. They are working closely with the rheumatologist. But I may need to find one that specializes in ITP. Has anyone had a lupus diagnosis eventually after the ITP?

Yes. I did. I'm an adult. We can talk about it if you would like to.