Re: New to list/seeking information for daughter/low platelet count

[Guest guest]

,

There are different things that can cause low platelet counts, including

blood disorders. ITP comes to mind only because a friend's child had this

(and is fine now). I'm not saying that is what your daughter has~~ I only

use it as an example of disorders. Because your daughter is also seen at a

cancer center she should be in good hands, as generally hematology and

oncology are dealt with by the same folks. I wish I had more info for you.

Please let us know what you learn.

Liz

New to list/seeking information for daughter/low platelet

count

Hello everyone! I've been on this list now since August when my

daughter was " diagnosed " with JRA . . . only because everything else

seems to have been ruled out. I've not taken the time to write

because my story, like yours, seems to go on forever! Anyway, I

really need some help from others who may be/have experiencing(ed)

the same thing we're going through. So, here goes.

In March of this year, our almost-15 year old began complaining of

achy, swollen fingers. Having five children, I hear complaining ALL

the time, so I didn't think much of it. However, it continued for

several weeks and I finally took her to the pediatrician in April.

Before our appointment, he ran some blood tests. All came back

normal except for her platelet count. It was 126,000. He didn't

think much of it since platelet counts can be off if the blood sits

in the tube for a period of time . . . that is until he found out she

had some petechiae. So, more tests were run, including some for tick-

borne illnesses since she had a tick bite AFTER complaining of the

finger/joint pain. Everything came back normal except the platelet

count . . . it was up to 166,000 though. So, off we go to the AFLAC

Cancer Center at the Children's Hospital in Atlanta.

That proves to be fruitless as all blood work comes back normal . . .

again . . . except for the platelets. Fingers/joints still continue

to be painful and swollen. We are to monitor the platelet count for

six months (until November) and return if counts still low.

In the meantime, we visited Dr. Vogler at Emory in August. He

proclaimed her otherwise healthy, but did put her on Celebrex for her

swollen joints and pain. It was really helped a lot and she seldom

complains anymore. She is to remain on it during the cold winter

months and then come off of it in the spring to see how things go.

But here is the deal: her counts dropped down to their lowest

(100,000) in June but began to rise after that point. In September,

they were back to 133,000. However, in October, they were down to

120,000. I'm thinking that November is not going to be much over

130,000, if that much. When her counts rise, they go up only by

about 6,000 - 10,000.

If anyone out there has a child suffering through these low platelets

and has gone for a stretch of time with NO CLUE as to what was going

on, please email me or post to the list. I'm really getting a little

desperate at this point to find more information. The doctors seem

to think she had a viral infection of some sort that has caused this,

but she was very healthy last winter.

I think her immune system must be compromised and I'm wondering how

we could get it back on track.

Any help before we return to the AFLAC Cancer Center next month would

be appreciated more than you could know! (Or maybe you DO know!)

Thanks for listening!

sunshine@...

[Guest guest]

My boyfriend also had ITP when he was little from age 3-6 and is a totally

normal guy now.. Hopefully its something like that. I believe its an

autoimmune disorder also.. so maybe the JRA and ITP are related in her..

Poly JRA and Spondy, 19

[Guest guest]

Thanks, Everyone, for your replies. I guess I was just having a

really bad day when I posted. I realize that there are many other

children who very ill and I should be thankful, and I am. It's just

frustrating that things are at a stand still. I did read on the

internet yesterday that ITP can take up to a year to heal itself.

That leaves us with six months to go.

As for mono, I think that was checked with all other possibilities

and it came back okay. Actually, she did have mono many years

ago . . . when she was about 5 maybe? I can't recall for sure, but I

do recall that she had it.

I tell you, for a child who is " healthy " , she has had some odd

things. She had chicken pox at 8 months (the little sister of the

girl she got them from DID NOT get them . . . and my daughter was

only around her one day), mono as a youngster, SHINGLES at age 9, and

bone growths (non-malignant) called osteochondromas (she has one on

her wrist and had another on the joint of her middle finger removed 3

or 4 years ago). She also suffered from multiple cases of strep for

two or three years until her tonsils and adnoids were removed.

I found out yesterday that eczema is an auto-immune disorder of the

skin. Seeing as how JRA and low platelets are also auto-immune

disorders, I beginning to wonder if there isn't something to be done

to improve her immune system.

If her condition(s) was/were caused by a viral infection, I wonder

how long ago the infection was? Who knows. I don't even remember

her being sick last winter, though two winters ago (at age 13) she

ran a fever of 105 for a day or two and the cause was unknown. X-

rays were made to check for pneumonia or bronchitis, but nothing was

found.

Well, thanks for letting me talk. It's nice to have other parents to

turn to. I am still on the lookout for parents of children who

suffer from both conditions my daughter is experiencing. If anyone

comes across any info, just give me a holler!

Thanks!

[Guest guest]

If her condition(s) was/were caused by a viral infection, I wonder

how long ago the infection was? Who knows. I don't even remember

her being sick last winter,

,

I also had that question with my daughter. One of the oddities during her

period before diagnosis was high strep titres. She had not had strep

recently, or been sick at all. Due to this she was given a tentative

diagnosis of " post-strep disorder " . When the infectious disease ped called

with this information I laughed at her. My response was, call it what you

want, but it doesn't change the fact that she can't get out of bed, and the

fevers, rash and swollen glands are slowly killing her. So the medical team

went back to the drawing board.

Christy (Abbie, 15 systemic)

Christy

Re: New to list/seeking information for daughter/low platelet

count

>

>

> Thanks, Everyone, for your replies. I guess I was just having a

> really bad day when I posted. I realize that there are many other

> children who very ill and I should be thankful, and I am. It's just

> frustrating that things are at a stand still. I did read on the

> internet yesterday that ITP can take up to a year to heal itself.

> That leaves us with six months to go.

>

> As for mono, I think that was checked with all other possibilities

> and it came back okay. Actually, she did have mono many years

> ago . . . when she was about 5 maybe? I can't recall for sure, but I

> do recall that she had it.

>

> I tell you, for a child who is " healthy " , she has had some odd

> things. She had chicken pox at 8 months (the little sister of the

> girl she got them from DID NOT get them . . . and my daughter was

> only around her one day), mono as a youngster, SHINGLES at age 9, and

> bone growths (non-malignant) called osteochondromas (she has one on

> her wrist and had another on the joint of her middle finger removed 3

> or 4 years ago). She also suffered from multiple cases of strep for

> two or three years until her tonsils and adnoids were removed.

>

> I found out yesterday that eczema is an auto-immune disorder of the

> skin. Seeing as how JRA and low platelets are also auto-immune

> disorders, I beginning to wonder if there isn't something to be done

> to improve her immune system.

>

> If her condition(s) was/were caused by a viral infection, I wonder

> how long ago the infection was? Who knows. I don't even remember

> her being sick last winter, though two winters ago (at age 13) she

> ran a fever of 105 for a day or two and the cause was unknown. X-

> rays were made to check for pneumonia or bronchitis, but nothing was

> found.

>

> Well, thanks for letting me talk. It's nice to have other parents to

> turn to. I am still on the lookout for parents of children who

> suffer from both conditions my daughter is experiencing. If anyone

> comes across any info, just give me a holler!

>

> Thanks!

>

>

>

>

>

>

>

>

>

>

[Guest guest]

My daughter had ITP at about age 4.. she wasn't dx with JRA until age 12.

They told us at the time that it could possibly be post viral although I didn't

rememebr her being ill during the preceding weeks. While dr's told us it could

be a year or more that it would affect her she bounced back alot faster & has

never had a problem with it since. She is now 18 years old and ITP hasn't been

an issue since she was 5 years old. I wish the best for you also!

Kristi

(Ashton 18 Poly jra)