Logan Update

[Guest guest]

Kim,

Is the another ped rheumy in your area for a second opinion?

Teri and Age 5 pauci JRA

Logan update

Ok,Ya'll, Get ready for a big vent. We went to the rheumy on Monday. They are sofrustratingly stupid !! They think that since Logan doesn't have anyswollen joints,his arthritis is under control. I told them that he wasstill having pain,,and he even complained when they moved his footaround,BUT,,I guess they are just a bunch of IDIOTS,,and they can'tcomprehend,when a child is in pain. They think that all his pain is fromthe hypermobility. I could just scream. They told me that if he hadswollen joints,then they would consider changing his meds. I told themthat when he did have swollen joints,,they couldn't get him in to seehim. I'm so sick of this crap. I just called about his labs,and his ASOTitre is 659,,so that is better (normal is 1-200) but his SED rate isstill 51 !! I can't believe it is that high and those idiots still thinkthe pain is due to hypermobility. I know the SED rate isn't totallyaccurate,,like if he has had a cold or something,it will be high,,but hehasn't had a cold,strep,,nothing !! He had a program at school the othernight,,and when we got home he told me that his feet were hurting fromstanding so long. Does that sound like hypermobility to you ?? So,on to the next thing. We went and got the braces.(I'm not sure if Itold ya'll about them,,they are for his ankles,,because he turns his feetin,when he walks,,) They are inserts that go in the shoe,,and then theycome up,and go over his ankles. Kinda like hard white plastic. He hadsuch a heart attack when they put them on him. I thought the child wouldpass out !LOL He fell to the ground,swore he couldn't straighten hislegs,he couldn't walk,move,breathe,,,etc. Talk about dramatic. The ladywas very nice and had a lot of patience. She said he is to wear them for30 min on 30 min off the first day. Then slowly increase it till he iswearing them for the whole day. After he calmed down (after a trip toTarget,to buy Pokemon cards) he was OK with them. He starts wearing themto school on Monday. He will have to take them off after 4 hours,andleave them off for 30 min,in the middle of the day,at school. I guessthey can take them off of him,at naptime. I hope that doesn't embarrasshim. He told me that he hopes none of his friends see them. I had toconvince him that they were cool,,and it was OK for his friends to seethem. So,,thats about it. Oh yeah,,he had also lost another pound,,so he isback down to 38 lbs,,,and he grew an inch. At 5 & 1/2 that is still prettysmall. I'm trying to fatten him up,,,I'd be glad to share some of mytummy with him ! LOL Kim and Logan 5 poly________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi Kim,

It really is a shame when a doctor has to see a child in pain to believe

something is wrong.s head rheumy has treated him like he was fine

because at the visit he felt good,it didnt matter that just a few hours

earlier he was creeping on his belly unable to stand.I read on a later post

that Logans knees are swollen on the side and they touch when he walks.That

brings back some memories.When first got sick the times he was able to

stand both knees were so huge they touched also.His wernt swollen on top

that I remember,but the way they looked on the insides broke my heart.Ive

never seen anything like it.Surely with that kind of swelling they will do

something,I also find it hard to believe that reactive would last so long

and it always gets worse when he gets sick,sounds like a traditional

straight up JRA flair,not that he keeps getting reactive arthritis from the

viruses.I hope you get some answers wednesday,just because they want it to

be reactive doesnt make it so and the sooner they get off there ego trip the

better for Logan.Good luck with your appointment and hope Logan has a great

weekend.

Love

Becki and 4systemic

Logan update

>Hi everyone,,,sorry I haven't posted in so long. We have been busy

>with getting ready for school,,trying to set up a new IEP,ect. Then

>for some reason,yesterday,my e-mails kept getting bounced,,so I

>didn't get any of them.

>We went to the pediatrician yesterday,and he thinks logans right knee

>is a little bit lower than his left,and the swelling doesn't seem AS

>bad,but definately still there. We had no sooner left, when Logan

>fell,while running,and hit his forehead sooo hard.By the time I

>reached down and picked him up,his forehead was actually the size of

>an egg.I have never seen anything like it in my life,,So we rush back

>to the DR office,and he checked him out. He is fine,but he looks

>terrible!!Hope everyone is doing well. Logan goes back to his rheumy

>on Weds. so hopefully we will have a good visit. Of course,I would

>never wish for Logan to be in pain,,but it would be nice for them to

>see where he hurts.

>Kim and Logan 5

>

>

>

[Guest guest]

Kim,

Glad Logan's swelling seems to be improving. At least

by what the doc says. What do you think? Poor guy,

sorry about the egg. The bumps kids get on their

heads are amazing.

I know what you mean about hoping they are hurting on

the doctor appt day. I hope that for Tas also, but

yet hope she doesn't hurt on any day. Catch 22

situation...

Teddy bear hugs and love,

Casaria and Tas

__________________________________________________

[Guest guest]

Hi Becki,

How is ? Does he have much pain lately,,I don't think I have seen

you mention that in your posts lately. I sure hope he is doing well.

Was the swelling on his knees from the arthritis? I think they will

surely do something on Weds. Has ever gotten really bad bruises?

Logan has another bruise on his shin,,,we have no idea what happened,,but

it is really bad. It started out the size of a quarter,but now it is a

little bigger than a half dollar,,and it has a hard knot under the

skin,,and it looks a little red around it. I hope I described it good

enough. The knot on his forehead,where he fell the other day,is massive.

The bruise has moved down and it is on the inside bridge of his

nose,where his glasses sit. It looks terrible !!! I guess we will call

the pedi on Monday,if his leg still looks bad. I call his pedi all the

time. Lucky for me,,he is in love with Logan, and has known him since

birth.

Hope ya'll are having a great day,,give that little 4 yr old a big hug.

Kim and Logan 5

[Guest guest]

Casaria,

I don't really know about the swelling,,I think it is about the same.

We go to the rheumy on Weds. The knot on his head,,,on the other hand,,is

HUGE. The bruise has gone down his forehead, to the inside bridge of his

nose (where his glasses sit),I'm sure tomorrow he will have a black eye.

He looks awful. I was asking Becki if ever has really bad bruises.

Logan got a bruise on his shin,,that started out the size of a

quarter,,and it is now larger than a half dollar,,and it has a knot under

it,and it is red around the edge. Would the Naprosyn cause that? Logan

falls ALOT so he is pretty bruised up most of the time,,but this one

looks different.

How is Tas? Any poop yet? I hope she gets better soon. I was just

wondering about her femur,,,what are they going to do about that? Hope

ya'll have a good day. hugs to Tas.

Kim and Logan 5

[Guest guest]

Dear Kim,

I hope Logan is feeling better. Is that knot starting to go down? It is so hard to see a great big bruise like that on your kid. How is he doing otherwise? I hope you are having a lovely relaxing weekend.

Riley starts kindergarten this year too. I am starting the birthday countdown. Only 9 days until her 5th birthday. I will be sad to change the age by her name to 5. It just takes away that hope that it would be gone by her 5th birthday. Logically I knew it probably wouldn't be but I was still hoping somehow this was reactive and would go away. No such luck. Sorry, didn't mean to get all mopey on you. Wishing you and Logan a pain free week.

xoxo, Ellie and Riley 4 poly

[Guest guest]

Ellie,

When does Riley start Kindergarten? Logan starts on Aug 22. I know

what you mean about the wish for this to be reactive. I feel like the Dr.

just gave me that false hope. I don't think there is any way that Logans

is reactive. He has his 2nd visit this Weds. so we'll see what they say

then,,,but I think with him complaining about his feet hurting so

often,,,,the chances of it being reactive are pretty slim. I just want a

definite diagnosis. My husband can't go to this appointment,,so my friend

is,,and I have a feeling she is going to DEMAND some answers,,,she is

very aggressive. I,,on the other hand,, would prefer to complain to

ya'll,,instead of pinning the Dr down.LOL

No, the knot on Logan is still huge. He has 2 black eyes now,,I think the

bruise has quit spreading,,but it is still soooo big. I'm gonna try to

get some pictures of it to send to ya'll,,,,it is just unbelievable. I

talked to his Occupational therapist today,and told her,how he didn't

even try to catch himself when he fell,,,he just went straight down,,and

she said that is definitely something that she will work on in therapy.

Other than that he had a pretty good day.

Kim and Logan 5

[Guest guest]

Hi Kim,

Just curious have they docs/therapists ever mentioned Sensory Integration with Logan? He sounds like my youngest in some ways. He has been to developmental preschool as well and will switch to integrated K at the end of the month. Your school district must put him in the best environment. Full day integrated may be too much, if so they have to either have another option or pay for private instruction that will meet Logans needs. If it becomes evident this arrangement is not working keep on them. They wanted to put our youngest in an all day K-2 classroom, I raised heck and he is now in a 1/2 day PM class like I asked for. e, mom to joe, 15 poly

[Guest guest]

e,

Yes they have mentioned Sensory Integration. That is one reason he

started with the Occupational therapist. At the time this all began,Logan

wouldn't even touch dirt,playdoh,shaving cream,,or anything like that. He

would say that he thought I was going to drop him when we would go around

curves in the car. And he would say that the vacuum made his ears cry. We

have been able to get him to tolerate much more,,but he gets very easily

overstimulated. He got so worked up the other night at IHOP,that he was

walking on the benches,climbing (literally) on the door, the whole time

singing Kimpossible. This is a very small town,full of idiots who have

never dealt with a disabled child in their lives. The entire first year

of his Preschool,I went round and round with his teacher,because I would

carry Logan in. The cars ,as we went across the crosswalk, terrified him.

She finally let up,after many many arguments with me. Anyway,my point

is,,they see Logan as being too babied,,and refuse to see him as

disabled. It took us getting notes from his developmental

pediatrician,occupational therapist,and now his rheumy to finally make

them see. Sorry to go on and on,,this is obviously a very touchy subject

to me. I'm just preparing for another battle,this year.

Thanks for listening.

Kim and Logan 5

[Guest guest]

Hi Kim,

is doing great,he plays like any normal happy 4 yr old boy all week

long then on the weekends it catches up with him.A little rest and hes his

old self again.Yes, the knees was swelling lots of it.I hate to sound so

stupid,but they were so big I didnt know what the heck was going on.Like I

said I dont really remember the tops being so big but when he could stand,

seeing his knees touch each other looked awful. doesnt get big bruises

just alot of them.I went to the International Stills Disease Foundation and

looked up labs.It had a pretty good section,and had the labs that would show

if your bruising easier then you should.If you have copys of Logans labwork

just punch in Stills Disease and the site I mentiond should be one of the

first you come across.Good luck at the rheumys,I hope they can give you

something more definate.

Love

Becki and 4systemic

Re: Logan update

>Hi Becki,

> How is ? Does he have much pain lately,,I don't think I have seen

>you mention that in your posts lately. I sure hope he is doing well.

>Was the swelling on his knees from the arthritis? I think they will

>surely do something on Weds. Has ever gotten really bad bruises?

>Logan has another bruise on his shin,,,we have no idea what happened,,but

>it is really bad. It started out the size of a quarter,but now it is a

>little bigger than a half dollar,,and it has a hard knot under the

>skin,,and it looks a little red around it. I hope I described it good

>enough. The knot on his forehead,where he fell the other day,is massive.

>The bruise has moved down and it is on the inside bridge of his

>nose,where his glasses sit. It looks terrible !!! I guess we will call

>the pedi on Monday,if his leg still looks bad. I call his pedi all the

>time. Lucky for me,,he is in love with Logan, and has known him since

>birth.

>Hope ya'll are having a great day,,give that little 4 yr old a big hug.

>Kim and Logan 5

>

>

>

[Guest guest]

Go Logan Go!!!!!!! Love the spaceship! He is out of this world, haha!

Great news on the correction so far, cheers to rounder days ahead!

' Mom

[Guest guest]

Thanks! They are rub on transfers. Just peel the backing off, place

on band and rub with a stick. They stick onto the helmet and then I

put mod podge over the top. The letters are stickers too.

-/Logan 7.5 months

> > We went to CT for Logans 4 week check this week. They were so

> impressed

> > with his decorations, took his picture and they want to put

> him in

> > the " decorating book " as an example! I was a proud mama!

> >

> > I got to see his headsicle. So interesting. So deformed! But

> > Charlotte pointed out places that have been rounding, and he

needed

> more

> > shaved. So that's good. I asked her if she thought he would

need a

> > second band and she said she didn't think so! I also asked her to

> > measure again. He has gone down a few millimeters since he was

> measured

> > in July. His ears are only 10 mm apart now!

> >

> > -/Logan 7.5 months

> > Banded 8/21/02

[Guest guest]

Very cute band on Logan!!! He is so cute. I know I have said it before but I really think everyone's kids almost look more happy and outgoing with their bands on than not!!! Does anyone else notice this?

Taryn

's mom

Logan update

We went to CT for Logans 4 week check this week. They were so impressedwith his decorations, took his picture and they want to put him inthe "decorating book" as an example! I was a proud mama!I got to see his headsicle. So interesting. So deformed! ButCharlotte pointed out places that have been rounding, and he needed moreshaved. So that's good. I asked her if she thought he would need asecond band and she said she didn't think so! I also asked her tomeasure again. He has gone down a few millimeters since he was measuredin July. His ears are only 10 mm apart now!-/Logan 7.5 monthsBanded 8/21/02 For more plagio info

[Guest guest]

Logan went to CT this past Monday. has posted two pictures of

Logan on the bulletin board because he thinks he's so cute! I asked

Charlotte when she thinks Logan will be done and she thinks the end

of December. That is almost 3 months away! He's had his band

shaved every time. In fact, there is almost nothing left to shave on

the right back. He was high moderate to begin with so I shouldn't

have hoped for less than 4 months total. Some days I just

think " gosh, I'm sick of this helmet! " But most of the time it

doesn't bother me.

-/Logan 8 months tomorrow

[Guest guest]

Logan:

3 more mos will fly by! Hopefully there will be more left to the

band to shave if need be! That's great he's had so many adjustments,

that shows things are working

I know what you mean - some days I too was SOOOO sick of that band,

but for the most part, it didn't bother me either.

Keep us posted.

Debbie Abby's mom DOCGrad

MI

> Logan went to CT this past Monday. has posted two pictures of

> Logan on the bulletin board because he thinks he's so cute! I

asked

> Charlotte when she thinks Logan will be done and she thinks the end

> of December. That is almost 3 months away! He's had his band

> shaved every time. In fact, there is almost nothing left to shave

on

> the right back. He was high moderate to begin with so I shouldn't

> have hoped for less than 4 months total. Some days I just

> think " gosh, I'm sick of this helmet! " But most of the time it

> doesn't bother me.

>

> -/Logan 8 months tomorrow

[Guest guest]

,

I saw a picturesof Logan on the board yesterday...LOL. I forgot to tell you that...and it was such a cute picture! I only looked briefly so i didn't see the other one..i'll look for it next time.

I know what you mean by some days i'm so sick of the helmet. I mean intead of kissing his head...i am kissing hard plastic...but i try not to think of it like that. Right now the helmet is a part of ..so when i'm kissing the helmet..it's really i'm kissing . But there are days i'm just like...man i can't wait to get rid of this helmet... and even though 6 weeks is so close...it's still so far to me..b/c has been wearing the helmet since Aug 15th..which is probably about 7 weeks ago (i think) and so he still has almost the same amount of time left in it that he's been in it...and sometimes i feel like he's had the helmet forever (other times i feel like he just got it). But in the end it really does go fast..and as long as Charlotte is shaving at each appt..you know growth is happening. Do you notice the difference when you look at him? My eyes always plays tricks on me...sometimes i'm like..wow i can't believe the difference and others i'm like i hardly see a difference. But i hold up his pictures from CT and there is a big difference. And 's helmet has been shaved at each appt so far...so i know growth is happening. But now i can really tell...his head looks much more normal than it did before. I'm sure Logan's is really starting to change and even though Charlotte said the end of December, you never know...Logan may have a huge growth spurt. And even if it is the end of December...it sounds far away..but it will go so fast. The holidays are all coming up..and it will just all zoom by. And just think..by the new year (and by his birthday) he will be helmet free with a nice round head!!! But it sounds so positive that he gets his helmet shaved every time!! Yay Logan!

Mom to

In a message dated 10/3/2002 9:33:12 PM Eastern Daylight Time, iammichelle@... writes:

Logan went to CT this past Monday. has posted two pictures of

Logan on the bulletin board because he thinks he's so cute! I asked

Charlotte when she thinks Logan will be done and she thinks the end

of December. That is almost 3 months away! He's had his band

shaved every time. In fact, there is almost nothing left to shave on

the right back. He was high moderate to begin with so I shouldn't

have hoped for less than 4 months total. Some days I just

think "gosh, I'm sick of this helmet!" But most of the time it

doesn't bother me.

-/Logan 8 months tomorrow

[Guest guest]

Thanks . Yeah, I guess I can look forward to a helmet-free-

round-noggin first birthday!

- B

> ,

>

> I saw a picturesof Logan on the board yesterday...LOL. I forgot to

tell you

> that...and it was such a cute picture! I only looked briefly so i

didn't see

> the other one..i'll look for it next time.

>

> I know what you mean by some days i'm so sick of the helmet. I

mean intead

> of kissing his head...i am kissing hard plastic...but i try not to

think of

> it like that. Right now the helmet is a part of ..so when

i'm kissing

> the helmet..it's really i'm kissing . But there are days i'm

just

> like...man i can't wait to get rid of this helmet... and even

though 6 weeks

> is so close...it's still so far to me..b/c has been wearing

the helmet

> since Aug 15th..which is probably about 7 weeks ago (i think) and

so he still

> has almost the same amount of time left in it that he's been in

it...and

> sometimes i feel like he's had the helmet forever (other times i

feel like he

> just got it). But in the end it really does go fast..and as long

as

> Charlotte is shaving at each appt..you know growth is happening.

Do you

> notice the difference when you look at him? My eyes always plays

tricks on

> me...sometimes i'm like..wow i can't believe the difference and

others i'm

> like i hardly see a difference. But i hold up his pictures from CT

and there

> is a big difference. And 's helmet has been shaved at each

appt so

> far...so i know growth is happening. But now i can really

tell...his head

> looks much more normal than it did before. I'm sure Logan's is

really

> starting to change and even though Charlotte said the end of

December, you

> never know...Logan may have a huge growth spurt. And even if it is

the end

> of December...it sounds far away..but it will go so fast. The

holidays are

> all coming up..and it will just all zoom by. And just think..by

the new year

> (and by his birthday) he will be helmet free with a nice round

head!!! But

> it sounds so positive that he gets his helmet shaved every time!!

Yay Logan!

>

>

>

> Mom to

>

> In a message dated 10/3/2002 9:33:12 PM Eastern Daylight Time,

> iammichelle@e... writes:

>

>

> > Logan went to CT this past Monday. has posted two pictures

of

> > Logan on the bulletin board because he thinks he's so cute! I

asked

> > Charlotte when she thinks Logan will be done and she thinks the

end

> > of December. That is almost 3 months away! He's had his band

> > shaved every time. In fact, there is almost nothing left to

shave on

> > the right back. He was high moderate to begin with so I

shouldn't

> > have hoped for less than 4 months total. Some days I just

> > think " gosh, I'm sick of this helmet! " But most of the time it

> > doesn't bother me.

> >

> > -/Logan 8 months tomorrow

> >

[Guest guest]

,

Does this mean Logan will be getting a second band? I know what you

mean about sometimes being so sick of the band...I know I was sick of

it especially on really hot days. But once both twins had graduated,

I was really sad to see the bands go. I know it sounds crazy, but

the cleaning, decorating, adjustments, etc. had become such a huge

part of our lives, that it was bittersweet to have it all end. Which

is probably why I will never leave this group!!!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Logan went to CT this past Monday. has posted two pictures of

> Logan on the bulletin board because he thinks he's so cute! I

asked

> Charlotte when she thinks Logan will be done and she thinks the end

> of December. That is almost 3 months away! He's had his band

> shaved every time. In fact, there is almost nothing left to shave

on

> the right back. He was high moderate to begin with so I shouldn't

> have hoped for less than 4 months total. Some days I just

> think " gosh, I'm sick of this helmet! " But most of the time it

> doesn't bother me.

>

> -/Logan 8 months tomorrow

[Guest guest]

I DO enjoy decorating it, that's the truth! In fact, I emailed the

Everlast company a picture of Logan in his band and requested

stickers. They wrote me back and said they would send some!

Charlotte said she doesn't think he would need a 2nd band, so that's

good

-/Logan 8 months

> > Logan went to CT this past Monday. has posted two pictures

of

> > Logan on the bulletin board because he thinks he's so cute! I

> asked

> > Charlotte when she thinks Logan will be done and she thinks the

end

> > of December. That is almost 3 months away! He's had his band

> > shaved every time. In fact, there is almost nothing left to

shave

> on

> > the right back. He was high moderate to begin with so I

shouldn't

> > have hoped for less than 4 months total. Some days I just

> > think " gosh, I'm sick of this helmet! " But most of the time it

> > doesn't bother me.

> >

> > -/Logan 8 months tomorrow