We were just classified as Chronic today

Hi all!

I was just writing to see if and when others received the chronic diagnosis. My daughter was diagnosed in April and stayed in the 20s and 30s for the first 3 months. She now stays in the 50s-80s. We were able to wait a month between tests for the first time and now today given another month between tests. She tested at 71,000 today.

The only thing we have done is two IVIGs with her last one being on July 7th. The hemotologist said today that she is now officially considered chronic and it will more than likely not go away. I have been reading and reading and it seems that this could still go away.

Am I being unrealistic?

Thank you all and I think of each and every one of your little ones and hope for high high platelets!

Christine
(Hannah diagnosed April 2010 count of 6,000, now anywhere between 55,000-81,000)

My son was diagnosed in March 2010. They are still hesitant to call his chronic even though it is rare (statistically speaking) that a 4yr old still have ITP after 6 months. We have been discussing other treatments options since we usually do IVIG when his count falls below 20 which is usually about 3wks after IVIG. He was recently treated a week ago at 5K.
Our Hematologist said that even if you are labeled "chronic" the chances for remission after a year are still high. How old is your daughter?

Julie

I might be wrong, but I didn't think that ITP was classified as chronic until 12 months now - up to 6 months = acute, 6-12 months = persistent, and 12 months + = chronic. I understood that the reason for this is that a significant number of children still recover between 6 and 12 months (25%?). Our haematologist says that after 12 months, still about 10% of kids recover each year.

So it seems a little bit early to me. But I am with you anyway - even after 18 months, I am still firmly convinced that my son's ITP will just get better at some point. Some of my friends think I've got my head firmly in the sand, but I reckon that optimism is the only way to go with ITP!! Good luck anyway.

Ali

Christine:

I have been following adults and children on this site since 1998. I can tell you, without a doubt, that the label "chronic" does NOT mean that your child will have ITP forever. I have seen children with ITP go into remission after three years, five years, eight years....there is no set time and it happens all the time.

My sister was diagnosed at 16 and struggled with low counts for a year. After that year, she went into remission and is now 44 with no recurrences. I'm on my 6th year of remission after dealing with ITP for about 8 years. If it can happen to adults, it can also happen to children who are even more likely to remit.

The fact that your daughter also has not had to treat much and her counts seem to be slowly rising on their own is a good sign. Anything can happen with ITP and you have every reason to hope for the best. You are not being unrealistic at ALL!

(Boo to the doctor's negativity)

Thank you all!

I was feeling great when we first got the results and they were yet again up. 71,000 4 months after IVIG was pretty good I thought.

I am so thankful for all your advice and past experience. I hope that someday when this is behind us I can come back and relate our progress towards remission.

Hannah is 9 so she is a little bit on the older side for acute (at least thats what our hemo said) but I think seven months is just not that long.

I think I need to come on here more when I'm feeling down because you all are able to put in into perspective and make me realize that just because they've slapped a label on it does not make it so.

I think it can always go away. Don't let anyone tell you different. Chronic is just a label --Nan

Nan, I so totally agree. Dougie's haematologist doesn't even use the word - he says chronic is just a label which means you've had ITP for more than 12 months, it is definitely NOT a prognosis.

Considering we are all dealing with a condition that is not black and white, not definitive an very confusing, I would agree with all others about not stressing out about "labels". I think I like what one person said the best which was they only use chronic if you are still dealing with it, in any way, after 12 months. After 6 years of dealing with it I can tell you that we have had stints of 6 months, 12 months, etc with high platelet counts. What I have learned, as tough as it has been, is that we enjoy the time when the platelets are up, and deal with managing the care when they are down.

All my best, JJ

cjlimes wrote:

Thank you all!

I was feeling great when we first got the results and they were yet again up. 71,000 4 months after IVIG was pretty good I thought.

I am so thankful for all your advice and past experience. I hope that someday when this is behind us I can come back and relate our progress towards remission.

Hannah is 9 so she is a little bit on the older side for acute (at least thats what our hemo said) but I think seven months is just not that long.

I think I need to come on here more when I'm feeling down because you all are able to put in into perspective and make me realize that just because they've slapped a label on it does not make it so.

My son is 11 and hit the 6 month mark in Oct. We started treating him naturally in August (did medical prior to that) and by the end of October he had normal counts again. Our son did not respond to ANY treatments they tried on him and we walked away from them when they started telling us at 3 months that he was likely going to be chronic since he wouldn't respond to anything.

I guess I'm just saying I wouldn't put any stock in the chronic thing.

patti

Chronic is a label that really brought us down, but it is also a label that, if need be, can open up other treatment options (at least in your insurance company's eyes). Julianne was called chronic after six months, but the recent articles are saying the "consensus" (is there really ever one?) is twelve months. It is just a label, and Julianne has been in what I would call remission for over a year now.
Norma

Sandi wrote:

Christine:

I have been following adults and children on this site since 1998. I can tell you, without a doubt, that the label "chronic" does NOT mean that your child will have ITP forever. I have seen children with ITP go into remission after three years, five years, eight years....there is no set time and it happens all the time.

(Boo to the doctor's negativity)

^this gives me hope.

Good! You are fully entitled to have hope - as much as you want.