Re: Fed up with our Specialist

[Guest guest]

Hi :

I am a long time member of the list but have not posted in a long

while. I noticed no one had yet replied to your questions - not

totally sure what Hypochromia is, but it is defined like this:

Hypochromia is a type of anemia in which there isn't enough hemoglobin

in the red blood cells.

That is from a government medical website:

http://www.nlm.nih.gov/medlineplus/ency/article/003455.htm

Illustrations

Hemoglobin

Alternative Names Return to top

Hgb; Hb

Definition Return to top

Hemoglobin is a protein in red blood cells that carries oxygen. A

blood test can tell how much hemoglobin you have in your blood.

See also: Hemoglobin electrophoresis

My daughter, who is now 14, was diagnosed with systemic onset jra at

3. She was severely anaemic when first diagnosed - as I remember it,

from the constant untreated inflammation. The anaemia gradually

improved as they found the right combination of meds that got her

symptoms under control. Also from the same site - what hemoglobin is.

It is a pretty good website for basic definitions that make

understanding some of these medical terms and explanations a little

more clear. Good luck. It is hard to see our kids like this. Mine had

a few years of symptom free " medicated remission " with Enbrel, but now

that she has hit puberty, the roller coaster of good and bad days

seems to have begun again.

Lynn ,

mom to Mickey, now 14, systemic jra since 3

> did however get some more info from the letter sent to my GP -

> can't understand all of it - if someone can explain...

>

> " Amy has a degree of anaemia with HGB of 89g and platelets of 399.

> She has not had her Ferritin done but there is a little hypochromia "

>

> If someone could explain it that would be great

>

> Amy in herself is grouchy and although the increase in pain and anti

> inflammatorys was good at first she is now in pain again and her

> knees are often stiff. In the morning first thing she can't weight

> bear and takes ages to get moving - it's heartbreaking to se her in

> such pain

>

> Love

> xxxxxxxxxxxxx

> Mum to Amy age 2 1/2 - Pauci-articular/Oglio-articular Immune

> Arthritis

[Guest guest]

Thanks Lynn

I'm thick skinned so didn't take any offence to no replies.. I am a long

term member of another group called Angel on My Shoulder; for people

who've lost kids and family or friends to Cancer- I transferred to that

group from the Acor N-Blast list 3 years ago when we lost our eldest son to

Neuroblastoma

So I totally understand that if people don't know the answer to a question

posted or don't have anything to say in response to a post then it can mean

that no-one answers a particular post - In the past I used to get paranoid

that I was being ignored and worried that I'd said something to offend the

other group members, some people get loads of response to their posts or a

reply from mine would get sidetracked off onto an irrelevant topic of

discussion!!

I imagine it's hard to keep track of who is who within the group, especially

with so many new members so frequently - Most of the people on my other list

have webpages for their children, as I do, and I also run a directory of

webpages/sites of other children and sufferers of Neuroblastoma so I often

have faces to go with the names and am able to check webpages to refresh my

memory when I don't quite remember a member

Are any members on Facebook or have webpages? It would be nice to have a

nose and put faces to names and learn a bit more about the group

Now I've sidetracked off subject!!!

Yes Lynn thanks for the blood explanation - even though we had a son with

Cancer and were constantly concerned with blood counts and stuff we didn't

learn about all the technical details, it was so much to take in and

understand when our brains were already up our arses!

Love

Xxxxxxxxxxx

Facebook - http://www.facebook.com/profile.php?id=739780048

<http://www.facebook.com/profile.php?id=739780048 & ref=profile> & ref=profile

Son's website - http://www.beebo.info/

From: [mailto: ] On Behalf

Of Lynn YC

Sent: 07 December 2008 16:43

Subject: Re: Fed up with our Specialist

Hi :

I am a long time member of the list but have not posted in a long

while. I noticed no one had yet replied to your questions - not

totally sure what Hypochromia is, but it is defined like this:

Hypochromia is a type of anemia in which there isn't enough hemoglobin

in the red blood cells.

That is from a government medical website:

http://www.nlm.nih.gov/medlineplus/ency/article/003455.htm

Illustrations

Hemoglobin

Alternative Names Return to top

Hgb; Hb

Definition Return to top

Hemoglobin is a protein in red blood cells that carries oxygen. A

blood test can tell how much hemoglobin you have in your blood.

See also: Hemoglobin electrophoresis

My daughter, who is now 14, was diagnosed with systemic onset jra at

3. She was severely anaemic when first diagnosed - as I remember it,

from the constant untreated inflammation. The anaemia gradually

improved as they found the right combination of meds that got her

symptoms under control. Also from the same site - what hemoglobin is.

It is a pretty good website for basic definitions that make

understanding some of these medical terms and explanations a little

more clear. Good luck. It is hard to see our kids like this. Mine had

a few years of symptom free " medicated remission " with Enbrel, but now

that she has hit puberty, the roller coaster of good and bad days

seems to have begun again.

Lynn ,

mom to Mickey, now 14, systemic jra since 3

> did however get some more info from the letter sent to my GP -

> can't understand all of it - if someone can explain...

>

> " Amy has a degree of anaemia with HGB of 89g and platelets of 399.

> She has not had her Ferritin done but there is a little hypochromia "

>

> If someone could explain it that would be great

>

> Amy in herself is grouchy and although the increase in pain and anti

> inflammatorys was good at first she is now in pain again and her

> knees are often stiff. In the morning first thing she can't weight

> bear and takes ages to get moving - it's heartbreaking to se her in

> such pain

>

> Love

> xxxxxxxxxxxxx

> Mum to Amy age 2 1/2 - Pauci-articular/Oglio-articular Immune

> Arthritis