Re: Stacia: D-dimer

[Guest guest]

Stacia,

Reading you post made me feel better. So, your Rheumy wasn't

concerned about the elevated d-dimer if all other labs are normal?

How elevated was it? Christian's is >1000.

Thanks

> Hi ,

>

> I'm so glad that others piped in with their two cents about the

> d-dimer. I got as far as knowing about the blood clotting and

> pulmonary embolism -- it says that right on the lab results, but

> still don't know exactly how it fits into the systemic JRA picture

> other than looking for indicaitons of MAS (not to mean that if it's

> high, the child has MAS).

>

> I think someone already said so, but I remember sometime in the

late-

> Feb or March timeframe there being a few posts about MAS and

someone

> even listed the symptoms to look for. As I recall, the most

obvious

> ones were basically flu-like symptoms with possibly violent

> vomiting. I have imprinted that in my brain that anytime I suspect

> the flu, to give the ol' rheumy a call or go to ER.

>

> At our rheumy appt. the other day, the elevated d-dimer caused no

> visible concern to the rheumy, as everything else looked pretty

good.

>

> I hope you have gotten some of your answers.

>

> Stacia and Hunter,8,systemic,iritis

[Guest guest]

Hi ,

Hunter's d-dimer was 507, and normal for this lab is 0-400 NG/ML.

We always have blood drawn a few days before the rheumy appt. so we

can discuss current lab work with him. I don't know what's a normal

result for your lab, but it goes without saying, if you're

concerned, talk to the rheumy.

I think I recall you saying before that it's always high?? Have you

ever talked to the rheumy about this or has he ever mentioned

anything?

Did you find any of the past posts about MAS? They might friek you

out --- just keep in mind that is it very deadly but also very RARE.

Have a nice holiday weekend.

Stacia and Hunter,8,systemic,iritis

[Guest guest]

Stacia,

When I read your post stating that Hunter's d-dimers was 507 I got to

thinking that I have never been given an exact number for Christian.

I called the lab to ask the exact number and I found out that the

test results I have been getting aren't the ones that I should have

been getting. The Doc has ordered the d-dimers quantitative which

should provide an exact number. Instead, the lab has been giving us

a more general test result with the options being <500 negative, >500

but <1000 moderately positive, or >1000 markedly positive.

Christian's range has always been >1000 except for one time when it

was >500 but <1000.

Anyway, I got to thinking that it would be good info to have the

exact number. Even though the number is high, maybe it has been

coming down all these months but just not enough to get under the

<1000.

The Lab can't give the number to me directly, it has to be the Doc.

We parents only give birth, take care of the children and pay the

bills....so I guess we don't earn the right to have a simple number

given to us. So silly. Anyway, I will ask the Doc to call and get

the exact numbers of all the past tests for the d-dimer so we can see

if he has improved at all.

Thanks for sharing that info with me, it got me to thinking and I

will soon have the exact numbers for Christian.

Thanks again.

> Hi ,

>

> Hunter's d-dimer was 507, and normal for this lab is 0-400 NG/ML.

> We always have blood drawn a few days before the rheumy appt. so we

> can discuss current lab work with him. I don't know what's a

normal

> result for your lab, but it goes without saying, if you're

> concerned, talk to the rheumy.

>

> I think I recall you saying before that it's always high?? Have

you

> ever talked to the rheumy about this or has he ever mentioned

> anything?

>

> Did you find any of the past posts about MAS? They might friek you

> out --- just keep in mind that is it very deadly but also very RARE.

>

> Have a nice holiday weekend.

>

> Stacia and Hunter,8,systemic,iritis

[Guest guest]

Hi ,

Stacia is right.You have every right to have full medical records of

Christian copied and then everything written about him faxed ,mailed or you able

to

pick up.I don't have everything on but close.I even pulled his huge file

off the peds door and looked through it.When she walked in I apologized and

explained there is stuff in there I had never seen and was told it was ok and my

right.I have a big folder that is stuffed to the max and keep jokeing to the

peds office before long he will need a whole other file.There has also been

times I walked in wanting to find something specific and they had someone come

out and sit with me to find it(although I would have rather been just left

alone,even if it took me hours)

I hope everything turns out ok with Christians D-dimer tests.I don't think

has ever been tested for that.He did have close to $1000 worth of blood

tests prior to his tonsilectomy which included two blood clotting tests but I

don't recall D-dimmer.One of the things Dr.Lehman told me that I will never

forget is systemic JRA can be a horrendous disease.

Thanks for spending time talking to me personaly,it means alot.

Hugs and prayers

Becki and 5 systemic(the sleeping lion)

[Guest guest]

Hi ,

Good luck getting the history of the exact d-dimer number. That

will be interesting to see if it has been changing at all, hopefully

coming down.

You do have the right to see any and all lab results and even the

entire record for all of your children as documented by any and all

doctors. I have asked our rheumy to write on the script for all

labwork that I get a copy mailed to me. It takes a while for all

the right people to do their job and go along with the process, but

I have been getting them since I made a big stink with the lab.

They are the ones responsible for providing a copy to me.

If you want a copy of all of Christian's records, the doc. office

may want to charge you copying fees, but you still have the right to

see everything. Maybe next time you're in, you can ask the doc. if

you can look through the file, or ask for an entire copy.

Let us know when you find all the d-dimer numbers.

Stacia and Hunter,8,systemic, iritis