Remission then a relapse?

Has anyone's doctor told them their child was in remission, only to have them relapse after that? If so how long were they in remission? Jonathan's doctor set his first remission goal as Sept. but that came and went, now it's set for April, and since he hasn't dropped at all in the last 6 month I think he may say remission, but I'm concerned that it isn't really gone. If he is in remission, will I ever stop walking on eggshells?

The word remission doesn't imply that the illness has gone, just that the symptoms have ceased or disappeared. A remission can be temporary or permanent. I seem to remember my son's doctor saying that for acute ITP most remissions will be permanent, but about 1 in 20 children will get further occurrences.

Ali

Ali is right. Once you have ITP, you can always relaps. Once you relaps, you can still move into a remission as well. And then you can have another relaps, etc. Its unpredictable. Doctors try to be encouraging and they are often a bit over optimistic, in my opinion (Tim's certainly was). You just can't really predict it. They try to using statistics, but you have to remember that you child may not fit within the norm.

Thanks you guys. I guess I was thinking relapse would be a more permanent thing. My son has the top hem for ITP in the country supposedly, and he was very optimistic at first, then changed his tune and said Jon's ITP is following a course he's never seen before. That was really discouraging for me. UGH! I wanna be over this, but I guess that's not being realistic is it?

My son Devyn was considered to be in remmission after 6 months of normal counts, his counts went back to normal for 14 months and then he dropped again this past Nov. His hemo siad that it was probably just a relaps as well but now after 5 months of low counts ( some very good counts as well) she has put him in the cronic group. When we frist went back to the hemo she seemed very positive that it would go away again as fast as it did the first time, but with ITP i really don't think they can ever tell you what is going to happen.

The whole time that Devyn was considered to be in remission i always had that feeling that our time with ITP was not done. Try not too worry too much about it coming back, just focus on what is happening right now with him. The fact that he hasn't dropped in 6 months is a great thing!! Every child is different, and here's to hoping that his counts stay up forever!!

Deanna

Deanna:

I have never heard of a typical "course" of ITP, so that was an odd statement for me to hear. I've seen everything and anything as far as ITP goes. Short remissions, long remissions, in-between and no remissions. The only time ITP would follow some sort of course would be if it's very short term and even that can be filled with ups and downs.

Hang in there. From what I have seen, long-term remissions are always possible.

I think what he meant by typical is that his first dose of steroids shot his platelets up fast and they sent him home thinking they'd continue to rise but they bottomed out instead and he almost died 4 nights after they sent him home. He said every child he's ever treated who responded that well and that fast to steroids have all been acute cases. Jon was his first to have such a good response at first then relapse so quickly afterward. Basically the minute they removed his IV he was steadily dropping. Plus he's had several severe nose and throat and mouth bleeds since then while his platelet counts were in normal range which they haven't been able to figure out yet.

My daughter (diagnosed at 11, now 17) tends to be in remission (counts 250K+) unless she has a virus, then the platelet counts crash completely (3K-50K). If she's sick long enough (lingering cold, flu, ehrlichliosis, etc), then she may need treatment. If it is a normal cold, they usually bounce back before treatment needed. For her, it is all about understanding the trigger to cause the episode (i.e. virus, or tick-disease like ehrlichliosis which started the first episode). If we know it is a quickly resolved trigger, we try to wait it out and avoid treatment. Treatment (IViG) makes her feel worse longer than living a life of being bubble wrap.

JSM:

Oh - that is odd. Dropping after a great response isn't unusual, but dropping that fast is.

Ya that's why his doc calls him atypical, because of how quickly and drastically he dropped after responding so well to steroids in the hosp. And he too drops with viruses and allergy flare ups.

Timothy is the same. He responded well the first few years, with good remissions and great responses. And then suddenly he was refractive and had drastic and sudden drops. He could be 80k, and then the next day be 1k. What perplexes the hemonc most is that he used to be responsive and have great remissions, and now is so refractive. He says this is atypical.

I hate that word. Can we please be typical for once so we can know what's going on a little more.