Hospitalizations?

Hi, I'm new here. My almost 9 year old just came home from the hospital today. She was diagnosed with ITP about a year ago and since then has been hospitalized 3 times, primarily because of horrible nosebleeds that wouldn't stop. The last hospitalization in June was extremely traumatic, as she had about a roomful of ENTs trying to stop her nosebleeding for several hours. In all cases, she has responded well to IVIG, where her counts would go up to 300k - 500k, although temporary. She was doing great, and had a pretty good count of 130k just recently (without treatment) in November (so she went from June to New Year's Eve) without incident, but after a fever and cold a few days ago I noticed petichiae and knew she was headed for a nosebleed.

Anyway, because her nosebleeds can last so long we were instructed by her hematologists to take her to the ER, so we we went to our children's hospital on NYE with a count of 3K. Fortunately, her nosebleed lasted about 35 minutes, which was on the shorter side compared to her other episodes, but that count devastated me. She got a round of IVIG last night but her count this morning was 9K. I'm very surprised they sent her home. She went home sooner this time because she did not need packing in her nose, which kept her in the hospital at least 3 days the last two episodes.

I am terrified of a spontaneous brain bleed with her at home, and not sure how we are going to cope with these hospitalizations.

I guess my question is, what next, and is this typical for children with ITP to be hospitalized so often? Her hematology doctors aren't advocating ongoing treatment- just deal with the bleeding when it happens and check platelets then. I feel like there could be a more proactive approach but not sure what that is.

Any thoughts? I appreciate any support- this is all very overwhelming as a parent, as I'm sure you all know!!

Hi rachelsmom,

I read through your post to see what was going on with your daughter. I'm thinking that there could be two things going on with your daughter and how they are treating her:

1) is that she did make it one year with ITP and not really doing too bad--except for the nose bleeds. There have been quite a few others who have had bad nose bleeds; but, she seems to be okay after a while. Her doctors might feel that she doesn't need any heavy-duty meds just yet.

2) I would want to maybe get a second opinion on the type of treatment she is getting and if it is best for her. The doctors should explain more to you on what their treatment method is and are they just going to watch and see if her platelets do go back up to at least 30. I would say that 30 wouldn't be too bad, but at 9 years old kids can be very active.

These are my thoughts...good luck to your and your daughter,
Dee Dee

Hi -
So sorry to hear about her recent round at the hosptial after a time of doing well. I'm just wondering if she has had any other treatments -- Anti-D? any prednisone? Really just a question as sometimes kids respond to one drug well but not another, or the drug may lose efficacy. At least that's our experience with our daughter, also one year into this journey. I can imagine those nosebleeds are scary - ugh.

I really second DeeDee's thoughts about a second opinion and perhaps other treatment options -- or at least the assurance from another doctor this is the best course.

Good luck.

I spoke with her hematologist over the phone today and asked if we could come up with a better plan. She has done well this year with pretty good counts without treatment, with the exception of the three traumatic hospitalizations, which were always brought on by some sort of virus, cold, etc. So I asked the dr. today if we could put her on anything when she comes down with a cold or fever, to prevent the platelet crash. She had a count done today and we will find out tomorrow morning. If her platelets are still low (this would be about 30 hours post IVIG) then we will do steroids, which we have never done before.

1. I also plan on getting a second opinion. We are at Children's Hospital of Philadelphia, which I thought was good, but I want to go to DuPont as well.

2. I would like a more proactive approach to this treatment-wise, since while she does well for some stretches, when her platelets do drop it is very scary for everyone with the nosebleeds.

3. We are going to follow up with ENT, since the hematologists think there is something with her nose that makes her prone to excessive bleeding. She has had nosebleeds (albeit minor) when her platelets were fairly normal.

4. I am trying to educate myself on all of these drug options. I thought IVIG was our saving grace, but this time around it doesn't seem to be working as well. Of course, the only count we have had since treatment was about 10 hours after the treatment, so maybe not enough time.

It sounds like you now have a good plan of action. Getting the second opinion is always a good ides and it will give you some peace of mind. And, like you said, you might be able to keep her platelets from dropping when she starts to come down with a virus.

It always feels good when you can get the hemo doctor on the phone and talk to him about what he/she plans on doing. I know with my hemo doctor, it is so hard to get him on the phone; he is so busy with patients.

Good luck to you and Rachel, and please keep us posted on how she is doing.

Dee Dee

Thank you Dee Dee.

I kind of freaked out on the Nurse Practitioner yesterday when she told me the IVIG wasn't working, and said it quite causally. I told her I didn't want to talk to her anymore and wanted the hematologist to call me back. We've had great experiences at CHOP so far, but with this hospitalization, I could barely get a doctor to talk to me, and most of them were pediatricians who didn't know much about ITP even though it was the hematology floor.

The hematologist called me back about an hour later.

ANYWAY, the good news is we got a call late last night from the pediatrician on call who who no background on Rachel's ITP and was calling as a bad news call about her platelets being 22K, which we were ecstatic about! This morning the hematologist called and feels the IVIG is working and we will do another count next week.

We will have to figure out another way to deal with preventing crashes when she gets sick with another illness. Thank you for the suggestions everyone- will bring up at our next appointment.

It seems like you now have things under control. It's really nice that the doctors did call you back
and talked to you about Rachel. And, once you get the crashes under control, you will probably feel a lot calmer.

Good luck to you, Rachel and your family. And, please do keep us updated

Dee Dee

The problem with trying to prevent crashes is that you cannot predict when that may happen, and you could end up over-treating the child. All treatments come with risks and side effects, so it really does become a benefit vs. risk type of thing.

Most ITP patients do not treat to prevent drops, they deal with them as they occur. I know this sounds like a "too late then" type of thing, but really, ITP can last years and the long-term side effects can really add up, especially for one so young.

Treating children with ITP is already controversial. In the UK, they don't treat children much at all, and some of that thinking is filtering over here to the U.S.