Re: Little Update and A Question

[Guest guest]

I know you want the oral route, but the injection works best. It is all

absorbed by the body so if it is going to work, you will know sooner rather than

later. The pills might not be all absorbed so if they don't work, you don't

know if you really failed mtx or if you failed the oral route. Also, the

injection goes thru the liver once. The pills go thru twice. Good luck,

(n, 22, systemic and MAS survivor. Tomorrow will be five years when I got

an email from on this list, telling me to bring n to the hospital

ASAP. That email saved her life. Thank you, !!!!!!!!!!!!!!)

On Apr 5, 2011, at 3:26 PM, Michele Lynch wrote:

> So K's knees remain up and down, depending on the day. She takes her

> naprosyn as needed - she hasn't taken any in a few days, but more or less

> has needed it most days for the last 8 weeks. I can see the fog rolling in

> at this moment (its early in the day here for fog!), so I'm guessing her

> knees will bother her in this evening's ballet classes (1-1/2 hours

> technique followed by an hour of pointe).

>

> More importantly, I suppose, we saw the optho. today. (I'm starting to

> really wonder about him now - not sure if that is good or bad.) K's eyes

> were both " trace " which is an improvement on the right from 8 weeks ago.

> Same same on the left. He wants us to continue for the next 10 weeks with 1

> drop in each eye once a day. But I also raised the fact that the pedi rheum

> was unhappy with the last visit 8 weeks ago and was discussing mtx. Optho

> said it was pedi rheum's call. I think he should have an opinion, but I can

> understand he wants to leave the big guns to the rheumy. OTOH, if he is so

> experienced with uveitis/JRA, why doesn't he have an opinion?! The good news

> is that there continue to be no signs of any cataracts/glaucoma issues

>

> Um, her eyes are more nearsighted than they were (she wears glasses with a

> pretty mild rx). It is hard to believe there is no connection.

>

> We see the rheum on Thursday (super fun spring break). Any important

> questions I should ask? Anything I should know? I'm pretty confident given

> what she has said to us over the last few months, both in unsolicited phone

> calls and at our last appt., and given the above, that she will be putting K

> on mtx.

>

> I have at least come to peace with the idea that an MDA might knock the

> pauci/uveitis into remission, and that is a good thing. I seriously hope we

> can go the oral route. I've done a lot of medical things to my kids, but I'm

> really not sure I can handle giving an injection.

>

> Michele (mom to K, 12, pauci, uveitis, ANA+)

>

>

[Guest guest]

wrote:

<<I know you want the oral route, but the injection works best. It is all

absorbed by the body so if it is going to work, you will know sooner rather

than later. The pills might not be all absorbed so if they don't work, you

don't know if you really failed mtx or if you failed the oral route. Also,

the injection goes thru the liver once. The pills go thru twice. Good

luck, >>

Hmmmm. Well that is a huge incentive for me right there. So .... how hard is

it to give an injection? Because my 12-year old is beyond scared of needles

after she had an in-office steroid shot in her knee. And I am horrified of

having to give her one - although I will absolutely do what we need to do

for her own well-being.

<< (n, 22, systemic and MAS survivor. Tomorrow will be five years

when I got an email from on this list, telling me to bring n to

the hospital ASAP. That email saved her life. Thank you,

!!!!!!!!!!!!!!)>>

Wow. ((HUGS))

Michele (mom to K, 12, pauci, ANA+, uveitis)

[Guest guest]

It isn't hard. The nurse will train you. Mtx doesn't hurt. It is a small

needle. Trust me, it hurts A LOT less than having her knee injected. n

would never have done that without sedation. Your daughter was very brave to do

that. (n, 22, systemic)

On Apr 5, 2011, at 8:27 PM, Michele Lynch wrote:

>

> wrote:

>

> <<I know you want the oral route, but the injection works best. It is all

> absorbed by the body so if it is going to work, you will know sooner rather

> than later. The pills might not be all absorbed so if they don't work, you

> don't know if you really failed mtx or if you failed the oral route. Also,

> the injection goes thru the liver once. The pills go thru twice. Good

> luck, >>

>

> Hmmmm. Well that is a huge incentive for me right there. So .... how hard is

> it to give an injection? Because my 12-year old is beyond scared of needles

> after she had an in-office steroid shot in her knee. And I am horrified of

> having to give her one - although I will absolutely do what we need to do

> for her own well-being.

>

> << (n, 22, systemic and MAS survivor. Tomorrow will be five years

> when I got an email from on this list, telling me to bring n to

> the hospital ASAP. That email saved her life. Thank you,

> !!!!!!!!!!!!!!)>>

>

> Wow. ((HUGS))

>

> Michele (mom to K, 12, pauci, ANA+, uveitis)

>

>

[Guest guest]

Thanks. Good to know. Blood draws are hard right now too.... although she

always admits after that they don't really hurt all that much.

And it wasn't so much bravery - just desperation to get back to ballet asap

versus waiting several weeks to be scheduled in. If she ever needs another

one, it'll be with xanax or versed or some such.

Michele

Re: Little Update and A Question

It isn't hard. The nurse will train you. Mtx doesn't hurt. It is a small

needle. Trust me, it hurts A LOT less than having her knee injected.

n would never have done that without sedation. Your daughter was very

brave to do that. (n, 22, systemic)

On Apr 5, 2011, at 8:27 PM, Michele Lynch wrote:

>

> wrote:

>

> <<I know you want the oral route, but the injection works best. It is all

> absorbed by the body so if it is going to work, you will know sooner

rather

> than later. The pills might not be all absorbed so if they don't work, you

> don't know if you really failed mtx or if you failed the oral route. Also,

> the injection goes thru the liver once. The pills go thru twice. Good

> luck, >>

>

> Hmmmm. Well that is a huge incentive for me right there. So .... how hard

is

> it to give an injection? Because my 12-year old is beyond scared of

needles

> after she had an in-office steroid shot in her knee. And I am horrified of

> having to give her one - although I will absolutely do what we need to do

> for her own well-being.

>

> << (n, 22, systemic and MAS survivor. Tomorrow will be five

years

> when I got an email from on this list, telling me to bring n to

> the hospital ASAP. That email saved her life. Thank you,

> !!!!!!!!!!!!!!)>>

>

> Wow. ((HUGS))

>

> Michele (mom to K, 12, pauci, ANA+, uveitis)

>

>

[Guest guest]

Ativan or Valium might work, too.

Sent from my iPhone

On Apr 5, 2011, at 9:04 PM, " Michele Lynch " <mich.lynch@...> wrote:

> Thanks. Good to know. Blood draws are hard right now too.... although she

> always admits after that they don't really hurt all that much.

>

> And it wasn't so much bravery - just desperation to get back to ballet asap

> versus waiting several weeks to be scheduled in. If she ever needs another

> one, it'll be with xanax or versed or some such.

>

> Michele

>

> Re: Little Update and A Question

>

> It isn't hard. The nurse will train you. Mtx doesn't hurt. It is a small

> needle. Trust me, it hurts A LOT less than having her knee injected.

> n would never have done that without sedation. Your daughter was very

> brave to do that. (n, 22, systemic)

>

> On Apr 5, 2011, at 8:27 PM, Michele Lynch wrote:

>

> >

> > wrote:

> >

> > <<I know you want the oral route, but the injection works best. It is all

> > absorbed by the body so if it is going to work, you will know sooner

> rather

> > than later. The pills might not be all absorbed so if they don't work, you

> > don't know if you really failed mtx or if you failed the oral route. Also,

> > the injection goes thru the liver once. The pills go thru twice. Good

> > luck, >>

> >

> > Hmmmm. Well that is a huge incentive for me right there. So .... how hard

> is

> > it to give an injection? Because my 12-year old is beyond scared of

> needles

> > after she had an in-office steroid shot in her knee. And I am horrified of

> > having to give her one - although I will absolutely do what we need to do

> > for her own well-being.

> >

> > << (n, 22, systemic and MAS survivor. Tomorrow will be five

> years

> > when I got an email from on this list, telling me to bring n to

> > the hospital ASAP. That email saved her life. Thank you,

> > !!!!!!!!!!!!!!)>>

> >

> > Wow. ((HUGS))

> >

> > Michele (mom to K, 12, pauci, ANA+, uveitis)

> >

> >

>

>

[Guest guest]

,

I agree with about the mtx injection. My daughter says it is no big deal.

She said it is less painful then a blood draw. I think some parents even have

suggested giving the injection when their child is sleeping and they never wake

up. I have not tried that but my daughter is 17 now. I know others have

mentioned using a cream to numb the site ahead of time, we have not tried that

either. My daughter has not had any side effects from the mtx other then being

tired on the morning after. I hope things work out well for you and I am sure

you will do fine with what ever decision you make.

Veri & Jaye 17 poly

Little Update and A Question

So K's knees remain up and down, depending on the day. She takes her

naprosyn as needed - she hasn't taken any in a few days, but more or less

has needed it most days for the last 8 weeks. I can see the fog rolling in

at this moment (its early in the day here for fog!), so I'm guessing her

knees will bother her in this evening's ballet classes (1-1/2 hours

technique followed by an hour of pointe).

More importantly, I suppose, we saw the optho. today. (I'm starting to

really wonder about him now - not sure if that is good or bad.) K's eyes

were both " trace " which is an improvement on the right from 8 weeks ago.

Same same on the left. He wants us to continue for the next 10 weeks with 1

drop in each eye once a day. But I also raised the fact that the pedi rheum

was unhappy with the last visit 8 weeks ago and was discussing mtx. Optho

said it was pedi rheum's call. I think he should have an opinion, but I can

understand he wants to leave the big guns to the rheumy. OTOH, if he is so

experienced with uveitis/JRA, why doesn't he have an opinion?! The good news

is that there continue to be no signs of any cataracts/glaucoma issues

Um, her eyes are more nearsighted than they were (she wears glasses with a

pretty mild rx). It is hard to believe there is no connection.

We see the rheum on Thursday (super fun spring break). Any important

questions I should ask? Anything I should know? I'm pretty confident given

what she has said to us over the last few months, both in unsolicited phone

calls and at our last appt., and given the above, that she will be putting K

on mtx.

I have at least come to peace with the idea that an MDA might knock the

pauci/uveitis into remission, and that is a good thing. I seriously hope we

can go the oral route. I've done a lot of medical things to my kids, but I'm

really not sure I can handle giving an injection.

Michele (mom to K, 12, pauci, uveitis, ANA+)

[Guest guest]

I think I saw that K was 12 is that right?  If it is I agree with to try

the shot first because it does work better and the liver thing.  I am also

thinking that at 12 she should start off right away by doing her own shot.  When

my daughter started the injections she wanted to be in control and do it all. 

It was awesome because in all seriousness I do not think I could have done it. 

There are a lot of videos of u-tube of little kids giving themselves the

injections watch them yourself first because there are ones on there where the

parents are doing it and the kids are throwing a tantrum, so best not to see

those if you go the shot route!  Hope it all works out for you.

Maureen

________________________________

From: Price <bc.price@...>

Sent: Tue, April 5, 2011 10:12:38 PM

Subject: Re: Little Update and A Question

I know you want the oral route, but the injection works best.  It is all

absorbed by the body so if it is going to work, you will know sooner rather than

later.  The pills might not be all absorbed so if they don't work, you don't

know if you really failed mtx or if you failed the oral route.  Also, the

injection goes thru the liver once.  The pills go thru twice.  Good luck,

(n, 22, systemic and MAS survivor.  Tomorrow will be five years when I got

an email from on this list, telling me to bring n to the hospital

ASAP.  That email saved her life.  Thank you, !!!!!!!!!!!!!!)

On Apr 5, 2011, at 3:26 PM, Michele Lynch wrote:

> So K's knees remain up and down, depending on the day. She takes her

> naprosyn as needed - she hasn't taken any in a few days, but more or less

> has needed it most days for the last 8 weeks. I can see the fog rolling in

> at this moment (its early in the day here for fog!), so I'm guessing her

> knees will bother her in this evening's ballet classes (1-1/2 hours

> technique followed by an hour of pointe).

>

> More importantly, I suppose, we saw the optho. today. (I'm starting to

> really wonder about him now - not sure if that is good or bad.) K's eyes

> were both " trace " which is an improvement on the right from 8 weeks ago.

> Same same on the left. He wants us to continue for the next 10 weeks with 1

> drop in each eye once a day. But I also raised the fact that the pedi rheum

> was unhappy with the last visit 8 weeks ago and was discussing mtx. Optho

> said it was pedi rheum's call. I think he should have an opinion, but I can

> understand he wants to leave the big guns to the rheumy. OTOH, if he is so

> experienced with uveitis/JRA, why doesn't he have an opinion?! The good news

> is that there continue to be no signs of any cataracts/glaucoma issues

>

> Um, her eyes are more nearsighted than they were (she wears glasses with a

> pretty mild rx). It is hard to believe there is no connection.

>

> We see the rheum on Thursday (super fun spring break). Any important

> questions I should ask? Anything I should know? I'm pretty confident given

> what she has said to us over the last few months, both in unsolicited phone

> calls and at our last appt., and given the above, that she will be putting K

> on mtx.

>

> I have at least come to peace with the idea that an MDA might knock the

> pauci/uveitis into remission, and that is a good thing. I seriously hope we

> can go the oral route. I've done a lot of medical things to my kids, but I'm

> really not sure I can handle giving an injection.

>

> Michele (mom to K, 12, pauci, uveitis, ANA+)

>

>

[Guest guest]

If she is put on MTX make sure to talk with the dr about adding folic acid as

well. The folic acid helps to minimize side effects.

Also, you should have some correspondence between the eye dr and the rheumy.

Ours would just give me a note of her findings to share with the rheumy; some

prefer to send it directly to the rheumy. This way they are on the same page and

you are not trying to speak for the eye dr to the rheumy.

Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

Michele Lynch

Sent: Tuesday, April 05, 2011 5:27 PM

Subject: Little Update and A Question

So K's knees remain up and down, depending on the day. She takes her

naprosyn as needed - she hasn't taken any in a few days, but more or less

has needed it most days for the last 8 weeks. I can see the fog rolling in

at this moment (its early in the day here for fog!), so I'm guessing her

knees will bother her in this evening's ballet classes (1-1/2 hours

technique followed by an hour of pointe).

More importantly, I suppose, we saw the optho. today. (I'm starting to

really wonder about him now - not sure if that is good or bad.) K's eyes

were both " trace " which is an improvement on the right from 8 weeks ago.

Same same on the left. He wants us to continue for the next 10 weeks with 1

drop in each eye once a day. But I also raised the fact that the pedi rheum

was unhappy with the last visit 8 weeks ago and was discussing mtx. Optho

said it was pedi rheum's call. I think he should have an opinion, but I can

understand he wants to leave the big guns to the rheumy. OTOH, if he is so

experienced with uveitis/JRA, why doesn't he have an opinion?! The good news

is that there continue to be no signs of any cataracts/glaucoma issues

Um, her eyes are more nearsighted than they were (she wears glasses with a

pretty mild rx). It is hard to believe there is no connection.

We see the rheum on Thursday (super fun spring break). Any important

questions I should ask? Anything I should know? I'm pretty confident given

what she has said to us over the last few months, both in unsolicited phone

calls and at our last appt., and given the above, that she will be putting K

on mtx.

I have at least come to peace with the idea that an MDA might knock the

pauci/uveitis into remission, and that is a good thing. I seriously hope we

can go the oral route. I've done a lot of medical things to my kids, but I'm

really not sure I can handle giving an injection.

Michele (mom to K, 12, pauci, uveitis, ANA+)

[Guest guest]

Thanks everyone for the encouragement and thoughts. When the rheumy first

mentioned mtx as a possibility, it seemed as if shots would be a better

route. I told K this am that she was going to have to deal with whatever the

dr. said was the best route for her. She didn't like that so much, but is at

least old enough to understand and appreciate that we are looking out for

her best interests. Not just her fear.

There is no way on this earth, however, that she would give herself a shot.

I'll give her the choice, but I know my child. Too bad, because I like the

idea of putting her in control.

Michele Tepper wrote:

<<If she is put on MTX make sure to talk with the dr about adding folic acid

as well. The folic acid helps to minimize side effects.>>

Thanks. Good point.

<<Also, you should have some correspondence between the eye dr and the

rheumy. Ours would just give me a note of her findings to share with the

rheumy; some prefer to send it directly to the rheumy. This way they are on

the same page and you are not trying to speak for the eye dr to the

rheumy.>>

He sends full reports directly to both the rheumy and our pedi.

Michele (mom to K, 12, pauci/uveitis/ANA+)

[Guest guest]

My kids also use EMLA cream which deaden the site. The needle is small and it

doesn't burn. My kids were terrified of needles, but they didn't want me to

stick them. They have always done their own from the start. They were both 10

at diagnosis. I am an RN, and they didn't think I'd do it right. Lol. I would

think that it would be easier at her age to let her start giving them herself.

But each kid is different. You could let her learn and tell her that you are

there for back up. She may surprise you. Good luck with this.

Audra

14, poly 07

Peyton 13, poly 08

> <<If she is put on MTX make sure to talk with the dr about adding folic acid

> as well. The folic acid helps to minimize side effects.>>

>

> Thanks. Good point.

>

> <<Also, you should have some correspondence between the eye dr and the

> rheumy. Ours would just give me a note of her findings to share with the

> rheumy; some prefer to send it directly to the rheumy. This way they are on

> the same page and you are not trying to speak for the eye dr to the

> rheumy.>>

>

> He sends full reports directly to both the rheumy and our pedi.

>

> Michele (mom to K, 12, pauci/uveitis/ANA+)

>

[Guest guest]

Yay! Just wanted to say that because K's eyes were so much better, and her

knee issue so minor, the ped rheumy wants to wait another 10 weeks, and

through another optho appt., to see how K is doing. Very relieved not to be

starting on mtx as we had feared. And more importantly, very very glad that

the ped rheumy is happy with where K is at. She even said that if the knees

had a bad flareup but the eyes remained constant, she was more inclined to

consider another steroid shot before systemic meds. Definitely a different

tune from our last visit - but she is getting to know K much better.

It seems to me that these pauci kids with iritis really fit into an odd

niche. Particularly when the joint issues are so minor compared to the eyes,

and they are as active as K is.

I really appreciate all the support. I am hopeful that if we continue to

stay the course, all will continue so positively.

We keep close watch on her eyesight and fingers crossed.

Michele (mom to K, 12, pauci/uveitis/ANA+)

[Guest guest]

That sounds great! If the eyes are good and the knee is good, Awesome!

Audra

>

> Yay! Just wanted to say that because K's eyes were so much better, and her

> knee issue so minor, the ped rheumy wants to wait another 10 weeks, and

> through another optho appt., to see how K is doing. Very relieved not to be

> starting on mtx as we had feared. And more importantly, very very glad that

> the ped rheumy is happy with where K is at. She even said that if the knees

> had a bad flareup but the eyes remained constant, she was more inclined to

> consider another steroid shot before systemic meds. Definitely a different

> tune from our last visit - but she is getting to know K much better.

>

> It seems to me that these pauci kids with iritis really fit into an odd

> niche. Particularly when the joint issues are so minor compared to the eyes,

> and they are as active as K is.

>

> I really appreciate all the support. I am hopeful that if we continue to

> stay the course, all will continue so positively.

>

> We keep close watch on her eyesight and fingers crossed.

>

> Michele (mom to K, 12, pauci/uveitis/ANA+)

>