Re: 2 Lori...

[Guest guest]

No problem Lori,

It's hard to find a rheumatologist you can trust (personalities clash

sometimes) so if this is one you like and is working out for you then

stick with him. It is amazing for him to say her RA is bad enough

for the MTX. I am really surprised to hear that, maybe she is young

enough for her body to correct this or grow out of it where she will

have no symptoms of RA. I was reading in the Arthritis Today

magazine about a 5 year old with RA. He had it pretty severely as

well. Not being treated with MTX though.

I do wish you success on the antibiotic therapy. My heart goes out

to you. I know what it's like to have a sick child. Your heart

breaks all of the time for your child. Hang in there.

peace and healing,

Ebony

--- In , " Lori Maynard " <lorimaynard@...>

wrote:

>

> Thank you all for understanding. The hair loss thing is a real

insult on

> top of the 40 lbs she's gained on Prednisone this year. No 13 yo

girl

> really wants to be dealing with such things on top of normal

hormonal

> changes.

>

> My husband couldn't believe it when the rheumy suggested wigs and

scarves.

> Overall, we've been extremely happy with this doctor, but not over

this

> particular issue.

>

> One thing he said is that hair loss is a temporary psychosocial

issue. I'm

> not sure what he means by temporary since in his next sentence he

said that

> her arthritis is bad enough that she needs to stay on MTX. To me

this means

> that his intention is for her to stay on MTX either forever or

until she has

> liver problems. I'm assuming (since he checks her liver function

every two

> weeks) that he would discontinue this drug if her enzymes were out

of whack.

>

>

> I kind of think waiting for liver problems is waiting a little too

long and

> that this kind of hair loss is somehow indicative of a heavy toxic

load on

> her body.

>

> So, although I really do trust this doctor, I know that ultimately

medical

> decisions for our daughter are in our hands. I've decided to cut

back on

> MTX for a couple of weeks and then get her off it completely. In

the

> meantime, I've also decided to introduce antibiotic therapy and

hope her

> stomach can tolerate it alright.

>

> I just wanted you to know that I appreciate your empathy. It makes

me think

> I'm not crazy to put such stock in just a physical thing as hair

loss. I

> hate watching my daughter go through this (both the disease and the

side

> effects of meds).

>

> Lori

>