Lucy

January 15, 2010

bribe her . I had Aubrey on Crutches and keep her out of Pe for a few days;

Terri and Aubrey

brom: Amy Hendrickson

Sent: Friday, January 15, 2010 6:16 PM

Subject: Lucy

We are back from the hospital. Lucy had steroid injections in her wrists

and in her ankles. She is feeling a little soreness and is still a little

dopey (she slept the whole ride back). It was REALLY hard seeing her being

put to sleep. I looked at the other families at Children's Hospital and I

see kids with no hair and kids in wheelchairs, and I know that we are lucky

it's not something worse. But jra really sucks.

They told me to keep Lucy off her feet as much as possible for the next 24

hours. That will be easy while she's still sleepy, but after will be

another story.

Thanks for all your support.

Amy and Lucy, 7, poly

January 16, 2010

Glad to hear she is all done. hopefully the soreness will subside soon! It is

true, although JRA is very serious, there is other things that are worse. Thank

God that isn't the case with Lucy! It is awful seeing the kids be put to sleep.

I know I cried both times na needed to be.

Take Care

ne (na 5 Poly)

From: TerriBer@...

Date: Fri, 15 Jan 2010 23:56:47 -0500

Subject: Re: Lucy

bribe her . I had Aubrey on Crutches and keep her out of Pe for a few

days; Terri and Aubrey

brom: Amy Hendrickson

Sent: Friday, January 15, 2010 6:16 PM

Subject: Lucy

We are back from the hospital. Lucy had steroid injections in her wrists

and in her ankles. She is feeling a little soreness and is still a little

dopey (she slept the whole ride back). It was REALLY hard seeing her being

put to sleep. I looked at the other families at Children's Hospital and I

see kids with no hair and kids in wheelchairs, and I know that we are lucky

it's not something worse. But jra really sucks.

They told me to keep Lucy off her feet as much as possible for the next 24

hours. That will be easy while she's still sleepy, but after will be

another story.

Thanks for all your support.

Amy and Lucy, 7, poly

January 16, 2010

I know they suggest that you go with them but truthfully I think it is best to

just send them with the staff. I have done it both ways and I now choose to send

them with the staff and not have to be a part of it. The kids don't remember a

thing and you remember the trauma of it all long afterwards. And yes, JRA sucks

but there are great medicines and there is great hope--sadly many at the

Childrens Hospital spend their days and months there. That is a hard place to

visit. Glad she did well---find something she loves---board games, video games,

favorite movies and popcorn and treats etc. Whatever works because it will help

to let the medicine do its job.

e, mom to " joe " 23 poly+

From: Amy Hendrickson <ahendrickson68@...>

Subject: Lucy

Date: Friday, January 15, 2010, 3:16 PM

Â

We are back from the hospital. Lucy had steroid injections in her wrists

and in her ankles. She is feeling a little soreness and is still a little

dopey (she slept the whole ride back). It was REALLY hard seeing her being

put to sleep. I looked at the other families at Children's Hospital and I

see kids with no hair and kids in wheelchairs, and I know that we are lucky

it's not something worse. But jra really sucks.

They told me to keep Lucy off her feet as much as possible for the next 24

hours. That will be easy while she's still sleepy, but after will be

another story.

Thanks for all your support.

Amy and Lucy, 7, poly

January 17, 2010

G'day Amy,

Here's hoping that Lucy will be up and running as soon as she's allowed!

We've always found the injections to work very well for Bayly, good

result, very quickly. And just quietly, it never gets 'easier' seeing

them put your little one to sleep. You kinda get used to it, but it is

never easy...for us anyway.

And I know what you're saying...there are a lot of kids way worse off

than ours, but these are ours and they shouldn't have to suffer at all.

No child should. No parent should have to worry either.

Thinking of you,

Jo

Bayly, 7, extended oligo

>

> We are back from the hospital. Lucy had steroid injections in her

wrists

> and in her ankles. She is feeling a little soreness and is still a

little

> dopey (she slept the whole ride back). It was REALLY hard seeing her

being

> put to sleep. I looked at the other families at Children's Hospital

and I

> see kids with no hair and kids in wheelchairs, and I know that we are

lucky

> it's not something worse. But jra really sucks.

>

> They told me to keep Lucy off her feet as much as possible for the

next 24

> hours. That will be easy while she's still sleepy, but after will be

> another story.

>

> Thanks for all your support.

>

> Amy and Lucy, 7, poly

February 6, 2010

Get an MRI of the jaw. One can have destruction there even without

pain. ( n,21, systemic)

Sent from my iPod

On Feb 6, 2010, at 9:20 AM, Amy Hendrickson <ahendrickson68@...>

wrote:

> I just wanted to give you all an update on Lucy. She had steroid

> injections

> in both wrists and both ankles 2 weeks ago. She is doing great! One

> wrist

> hurt for 4-5 days and then no pain. Thank you for all of your advice

> to

> believe her. She was right. She was in pain.

>

> Now she complains that her jaw and back hurt (which she did

> occasionally in

> the past). I suspect that these joints didn't hurt as badly as her

> wrists

> and ankles, so she didn't complain about them. I'll keep watching

> her and

> see how she does with these joints.

>

> Amy and Lucy 8, poly

>

April 7, 2010

That is really good news! I am glad the dr is on top of her eye problem. I have

never heard of ocular migraines, so that is really interesting info. Is there

anything that can be done for those, like with regular migraines? Any med, or

maybe something she can do to relax and help the migraine to pass? My husband

and two daughters all get migraines and each needs to do different things to

help them pass once the pain starts. Michele ( 22, spondy)

________________________________

From: [mailto: ] On Behalf Of

Amy Hendrickson

Sent: Tuesday, April 06, 2010 5:56 PM

Subject: Lucy

We went to the ped. opthamologist today and he saw Lucy. Luckily, I guess,

she was having the vision loss when we got there so she was able to describe

it to him. He examined her eyes and said everything looks good, except she

is having ocular migraines. They are painless, but they cause temporary

vision loss. He said that he wants to check her again at her next screening

and if they are getting worse he may refer her to a neurologist, But for

now he said they are benign as far as he can see. So really good news!

Amy and Lucy, 8, poly

April 7, 2010

Apparently there isn't much that they do for them. Since they only last a

few minutes and episodes come and go, he said it would be really hard to

identify a trigger. He hopes that they will go away for good, which would

be great. I am just so relieved that it is not a neurological problem.

Amy and Lucy, 8, poly

On Wed, Apr 7, 2010 at 8:32 AM, Tepper, Michele <MTepper@...>wrote:

>

> That is really good news! I am glad the dr is on top of her eye problem. I

> have never heard of ocular migraines, so that is really interesting info. Is

> there anything that can be done for those, like with regular migraines? Any

> med, or maybe something she can do to relax and help the migraine to pass?

> My husband and two daughters all get migraines and each needs to do

> different things to help them pass once the pain starts. Michele ( 22,

> spondy)

>

> ________________________________

> From: < %40> [mailto:

> < %40>] On Behalf Of Amy

> Hendrickson

> Sent: Tuesday, April 06, 2010 5:56 PM

> < %40>

> Subject: Lucy

>

> We went to the ped. opthamologist today and he saw Lucy. Luckily, I guess,

> she was having the vision loss when we got there so she was able to

> describe

> it to him. He examined her eyes and said everything looks good, except she

> is having ocular migraines. They are painless, but they cause temporary

> vision loss. He said that he wants to check her again at her next screening

> and if they are getting worse he may refer her to a neurologist, But for

> now he said they are benign as far as he can see. So really good news!

>

> Amy and Lucy, 8, poly

>

June 2, 2010

Not sure if this could be a reason for her pain, but when my son showed no

signs of active arthritis but was still in pain, the rheum said it was

because his muscles had been compensating for so long that they were tight

and not used correctly, especially his legs. Daily stretching did help at

that time. Would physical therapy be an option?

On Wed, Jun 2, 2010 at 11:43 AM, Amy Hendrickson

<ahendrickson68@...>wrote:

>

> We're still dealing with mystery pain with Lucy. We went throught the whole

> drama of having the rheumy thinking she was making it up and suggesting a

> behavioral psychologist. I insisted on an MRI and we looked at her jaw and

> the MRI showed no synovitis. When they called me with the results, I told

> them that she is still having pain and they told me to give her tylenol.

>

> So...I waited for school to get out to see if her morning pain was because

> she doesn't want to go to school. Nope. She is still complaining of pain

> mostly in her legs. I have an appoinment for her in early July. My plan is

> to talk to the rheumy in private and tell her what I am seeing with Lucy

> and

> why I don't think she is making it up. I also want to tell her that I'm

> hoping that if she gets to know Lucy at jra camp that she will see her

> personality and hopefully understand that Lucy is just not a drama queen.

> (Now if it were my 12 year old, who screams about a hangnail, I would have

> my doubts. :-))

>

> I am just so frustrated that she is still in pain and no one is listening.

> Clearly the Enbrel is taking care of the inflammation. But she's still in

> pain. Is this just thequality of life I have to expect for her? And how do

> I tell an 8 year old that?

>

> Amy and Lucy, 7, poly

>

March 11, 2011

I posted before that a bump had appeared on Lucy's wrist that I thought was

a bone spur. I finally got her in with an orthopedic doctor yesterday and

he says that it is a tendon sheath cyst and that it is caused by

inflammation in the tendon. He thinks that it is due to inflammation from

jra. She's supposed to be in remission. She's had continued pain in her

wrists and legs, but the last MRI in December showed no inflammation. I

have contacted the rheumy and they are going to talk to the ortho. Anyway,

I am wondering if her inflammation might be in her tendons, especially since

she complains about pain in her legs. Anyway, has anybody had any

experience with this? Heard of a tendon-sheath cyst?

Amy and Lucy, 9 ???

March 11, 2011

Amy

I'm so sorry to hear Lucy is dealing with this...how frustrating for her and

you! I hope you get some answers soon! Tell Lucy that Lexi is thinking of her!

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