Re: Next Steps?

[Guest guest]

Sheryl,

So sorry to hear of 's difficulties. It is really tough to reason

with a child that age about her many scary procedures and doctor visits.

My daughter started with her symptoms just after her 2nd birthday. She is

pauciarticular and ANA negative, as well. Unfortunately, she was still

diagnosed with uveitis a month after receiving her pauci JIA diagnosis. Her

case has turned into quite stubborn and will require surgery for cataract

removal, pupil rebuilding, and removal of the calcium deposits that have

accumulated slowly. We look forward to getting her eyes into remission so

that we can move to those steps in the process.

Sophie also reacted very badly (somewhat violently and very confused) to

being sedated at 's age. The nurse told me that 2 year old have been

found to be the most difficult to do this with and there isn't usually

anything that can be done about it. (Lucky you.) Fortunately (in the

loosest sense of the word), they will put under general anesthesia

for the steroid injection(s) to her toe. Sophie did MUCH better being under

general at that age than being sedated. So much so, we were shocked at her

ability to bounce back to her normal self just a couple of hours afterward.

Unfortunately, that worsened as she got older. She reverted back to

reacting very violently and combative during her recovery time. Each time,

the nurses/hospital staff would comment on the severity of her actions. It

goes without saying that this type of behavior is very " anti-Sophie " . So,

I've just realized she is one of those children whose body reactes badly to

that medication. I always stress to the anesthesiologists how Sophie reacts

and then I describe it in great detail. Each time a different mix of the

medications has been tried but we still haven't had much luck with her

immediate recovery time after a procedure require general anesthesia. I

know this isn't helpful but I just thought you should be prepared for the

possibility of a repeat and negative " performance " due to the drugs.

That being said, I would urge you to go ahead as quickly as possible with

the steroid injections if there is still active inflammation in the toe.

Though the pain is being treated, the swelling is causing damage with each

passing day. Sophie had steroid injections directly in her left foot and

ankle as well as her right knee. They quieted her joints immediately! Her

recovery was very quick. Though it was suggested to keep her as inactive as

possible for a few days following... she had other plans. We have been

extremely fortunate in that we've been able to continue keeping the

joints quiet since their injections with a small weekly dose of mtx. We

stopped taking the Naproxen ages ago. I know many others from this board

that also had very positive results from the steroid injections.

The eye exam is pretty routine. Make sure they look at her eyes before

dilating them as well as after! A lot of difficulties with the eyes can't

be seen as well once they are dilated. I would hate for little to

have to sit through another eye exam if this was found to be the case

after her eyes had been dilated. After the initial peak in the eyes that

aren't dilated, the doctor would give the dilating drops to Soph and then

have her sit in the waiting room again while they took affect. What I have

to say probably won't help you feel much better about the impending visit

but it might help you be prepared. Sophie goes ballistic each time she has

to have drops in a doctors office. That girl is as still and quiet as a

mouse when I give them at home twice a day, but there is something about

being in that office setting and having to get them that sends her out of

her mind. It is never a pretty site but the exams are vital to her sight.

What do you do?

They may also do a pressure test. If so, they will give numbing drops

because the guage touches the eye. Sophie still complains of discomfort

even after the numbing drops. I hate to say it but any eye exam where drops

are involved is usually quite stressful for me but even more so for Sophie.

I keep hoping that her vast experience will make the next visit better...

that has yet to be the case.

Wow. I hope I haven't really depressed you. Maybe someone else will chime

in who has better experiences with these things or wonderful advice

at helping to soothe your daughter during the process. My response seems to

only prepare you for the possibility of things not going too smoothly and to

reassure you that you are not alone if that is what occurs.

Please keep us posted about the rheumy/toe injections and the eye visit!

You all are in my thoughts.

Professional Mom to:

Sophie (5) - pauci/panuveitis " JIA Super Fighter "

Charlie (13 mos) - " The Bird "

On 9/3/06, Sheryl <taylorsmomma@...> wrote:

>

> Hi all! It has been a while since I last visited. I need to " ramble " a

> bit about my 2 year olds treatment, plus I have a question.

>

> We had 's rheumy appointment at the end of July and she

> confirmed a diagnosis of paucyarticular JRA. After having the

> bloodwork done, we were relieved to hear that her ANA and RF were both

> negative.

>

> The rheumy gave us an RX for Naproxen to treat 's swollen big

> toe. She said we should see some improvement in about 4 weeks and that

> we would follow up in 6. We discussed briefly the possibilities of

> what will happen if the NAproxen doesn't take the swelling down and

> she mentioned an injection of something (steroids? cortisone?)

> directly into the toe. While that makes total sense, it scares me to

> think of it because it will require her being sedated - something we

> dealt with at her MRI, and something that was horrible to experience!

> I am terrified that she may hae to be sedated again (they had issues

> finding usable veins and she was stuck numerous times - not nice for a

> 2 year old!)

>

> So, we have been vigilant about her taking her medication - she even

> does it herself now! - and I have yet to notice any relief in the

> swelling. It has been 5 weeks and we go back on the 13th. I am worried

> the rheumy may rush into treating the toe with the injection and it

> will be a traumatic experience for all involved. The meds do seem to

> help curb any pain (except the 1000 boo-boos she complains about since

> discovering the wonders of Band-Aids!) When we had the blood drawn for

> the tests, things went great and we were hoping that would result in

> blood tests and other needles sticks being accepted easier. But

> thinking of sedating her again makes me worry that it will set us back

> again.

>

> Also, we are seeing the eye doc on the 13th as well. I am not sure how

> to " talk the visit up " with her. The nurse basically described it as a

> typical eye visit that I would go through, complete with getting the

> dilating drops, but I don't know what to say to her to prepare her.

> Can anyone give me any ideas on how this will go, especially with a

> toddler? I want to be able to prepare her as she does much better if

> she knows what to expect.

>

> Thanks so much for all of your support and help!

>

> Sheryl

> (, 28 months - Paucyarticular JRA)

>

>

>

[Guest guest]

Dear Sheryl,

Hi, I don't post here much, either, but I happened to

read your e-mail, and it reminded me of when my

daughter was first diagnosed. She was not quite

two years old at the time, and doctor's visits became

a real challenge since we had been to quite a few

doctors before her diagnosis, and she was becoming

increasingly uncomfortable with all the new changes

(and strangers with lab coats and little exam rooms

and people poking and examining her knee after LONG

waits in the waiting rooms) taking place in her life.

I remember her first visit to the ophthalmologist, and

she did not handle it well at ALL (although the

pediatric ophthalmologist really had a gift in dealing

with children, and 's reaction didn't seem to

bother him in the least---I'm sure he had probably

experienced similar circumstances before, if not

worse). But my main concern was for my daughter, and

for her feelings of security in a world that was

suddenly topsy-turvy. When she was really young, she

would sit on my lap at ophthalmologist visits (that

wouldn't work anymore, since she's gotten so big!). I

also told her (before any appointments) that if she

felt scared at any time, just hold out her hand, and I

would come and hold her hand during any exam. She did

extend her hand to me a few times during that first

year, and I did as I promised---I would get up from

where I was sitting and go stand close by and hold her

hand.

Our biggest nightmare happened to be the blood draws

for the first few years. She would scream and wail,

no matter how much we talked about things and how much

emla cream I used beforehand. Thank the Lord, by the

time she was put on Methotrexate and needed more

frequent labs, I found a different lab (closer to our

home than the ones I had used previously), and she has

gotten to know the lab techs there, and it's now a

" piece of cake. " We've come a long way in seven

years! You'll get there, too, eventually!

Whenever I had a gut feeling that was scared

about things and it might not go well (in those early

years), I would e-mail all my family members and

friends who believe in the power of prayer and ask

them to storm the gates of heaven!

Hope some of my rambling has helped at least a little!

Tammy (mom to , who is almost nine, with

pauci-articular JA and related uveitis---both mild,

but very, very stubborn)

--- Sheryl <taylorsmomma@...> wrote:

> Hi all! It has been a while since I last visited. I

> need to " ramble " a

> bit about my 2 year olds treatment, plus I have a

> question.

>

> We had 's rheumy appointment at the end of

> July and she

> confirmed a diagnosis of paucyarticular JRA. After

> having the

> bloodwork done, we were relieved to hear that her

> ANA and RF were both

> negative.

>

> The rheumy gave us an RX for Naproxen to treat

> 's swollen big

> toe. She said we should see some improvement in

> about 4 weeks and that

> we would follow up in 6. We discussed briefly the

> possibilities of

> what will happen if the NAproxen doesn't take the

> swelling down and

> she mentioned an injection of something (steroids?

> cortisone?)

> directly into the toe. While that makes total sense,

> it scares me to

> think of it because it will require her being

> sedated - something we

> dealt with at her MRI, and something that was

> horrible to experience!

> I am terrified that she may hae to be sedated again

> (they had issues

> finding usable veins and she was stuck numerous

> times - not nice for a

> 2 year old!)

>

> So, we have been vigilant about her taking her

> medication - she even

> does it herself now! - and I have yet to notice any

> relief in the

> swelling. It has been 5 weeks and we go back on the

> 13th. I am worried

> the rheumy may rush into treating the toe with the

> injection and it

> will be a traumatic experience for all involved. The

> meds do seem to

> help curb any pain (except the 1000 boo-boos she

> complains about since

> discovering the wonders of Band-Aids!) When we had

> the blood drawn for

> the tests, things went great and we were hoping that

> would result in

> blood tests and other needles sticks being accepted

> easier. But

> thinking of sedating her again makes me worry that

> it will set us back

> again.

>

> Also, we are seeing the eye doc on the 13th as well.

> I am not sure how

> to " talk the visit up " with her. The nurse basically

> described it as a

> typical eye visit that I would go through, complete

> with getting the

> dilating drops, but I don't know what to say to her

> to prepare her.

> Can anyone give me any ideas on how this will go,

> especially with a

> toddler? I want to be able to prepare her as she

> does much better if

> she knows what to expect.

>

> Thanks so much for all of your support and help!

>

> Sheryl

> (, 28 months - Paucyarticular JRA)

>

>

>

>

>

__________________________________________________

[Guest guest]

One last thing about the blood test, i believe its dont take your T3 12 hours

before a test, and people say that they feel best with there FT3 top end of

range or slightly above on T3 only. If anybody can add input into this it would

be good.

My FT3 is always crazy high, but things arent too settled with me atm so i am

not relying on it one bit and just going by how i feel.

Steve

> They have already tried to put my dose down once, and I have now been

instructed that I MUST take my meds before the next blood test to avoid a false

low result, so if I do that (yeah right) I think they will rely on the blood

test and ask me to drop it. If I stay off the meds for 24 hours before the blood

test, TSH is suppressed, FT4 is below range and FT3 is mid-range.