's appointment

[Guest guest]

Gail,

Thanks so much!!

I kind of expected him to say we are done...b/c at our last appt with him he told us that if 's head didn't grow that much..then we would get him out of the helmet..b/c he didn't grow much from the month before that either. And also Charlotte at CT said he would probably say we were done (which she would've liked to see him continue in this band for a while)...although i didn't expect him to say we are done today and not to wear it anymore. I thought he would say he should wear it until our appt at CT next wed.

I am happy though that we are done...and that he did get the correction he got.

It's funny how we always worry...lol...and i know regression is rare..but even still i'm worried..LOL. But i'm glad it's normal to worry....

Thanks so much!!

In a message dated 11/20/2002 11:44:16 PM Eastern Standard Time, momofivftwins@... writes:

,

I know just how you feel. When Sara graduated I was totally caught off guard. They took her band off, checked her head and said "she's done". I kept wanting to ask, "Are you sure?". Two days later we went on a road trip and I was a wreck. I spent most of the 8-hour drive looking at her in her carseat, climbing in the back of the van, and repositioning her round little head. She was only 7 months old and not even sitting up yet. She's 13 months now and I still catch myself repostioning her and checking the roundness of her head. If I knew then what I know now I would've realized that all my worry was for nothing. I know it's hard when it's you and your child, but try to gain strength from those of us who have gone before. It's very rare for a baby to regress, and it's actully pretty common for a baby to continue to round out after graduation. Sam looks pretty darn good to me today, but last May I was very skeptical. And I would even say that Sara might have had more improvement since graduation. I actually thought that both of them looked better a week after graduation because the ridge by the opening really seemed to soften without the band being there to put pressure on it. I hope that this is the case with . You have done your best for him and he will know it.

Gail, Sam and Sara's mom, DOC grads

[Guest guest]

Thanks Debbie!!!

I was planning on getting the exit casting done..and probably will...but i thought we get to keep the head mold...and they don't even make it unless you request it..but i'm going to ask Charlotte if we can have it. LOL

When i get the pics from CT i'm going to send that in with the before pics b/c i think their pics will be more accurate than mine...and then you guys can tell me what you think.

Thanks!!

In a message dated 11/21/2002 8:49:57 AM Eastern Standard Time, dj2kirby@... writes:

:

Well early congradulations to Ahhhhh, the famous fear of

regression! Really, I've been with the group over 2 yrs now and have

only heard of maybe 2 cases of regression, and it was nothing

serious. 's older now and as you said is rarely on his back

for any length of time any more, sleeps on his belly and is getting

older, the chance of him regressing is pretty low. Try not to stress

about it. Since you're so concerned with it, are you planning on

getting an exit cast done? This may be a good idea that way in 3 mos

and you do think he's regressed, you can look back at the exit mold

to compare to.

But it sounds like he's rec'd very good correction! Take a deep sigh

of relief and be happy this is almost behind you & !!

You did it!!!

Debbie Abby's mom DOCGrad

MI

[Guest guest]

Thanks !

In a message dated 11/21/2002 9:29:49 AM Eastern Standard Time, iammichelle@... writes:

Congratulations !

-/Logan 9.5 months

PA

[Guest guest]

Thanks so much Marci!!

In a message dated 11/21/2002 10:07:40 AM Eastern Standard Time, marcisch@... writes:

,

Well it sounds like this is a mixed blessing to you. On the one

hand you are glad that he is done, but on the other hand you

worry that being out of the helmet will cause his head to reflatten.

I think that is a pretty common fear. Regression is pretty rare and

I know that you will be diligent about making sure he stays off the

previously flat side as much as possible. Try not to worry too

much - I know, easy to say, hard to do.

Congratulations on 's pre-graduation!! Enjoy that bare

head!

Marci (Mom to )

Oklahoma

[Guest guest]

LOL..you're right. I was thinking about how their generation...there will probably be tons of kids with flat spots or not round heads....that kids won't make fun of it anymore..b/c so many will have it. I just think of how many people don't do anything to correct it..how so many peds tell parents not to worry about it..and so many parents listen....that there will be so many people with odd shaped heads.

And i had a few people that knows about and his head tell me...i know someone who's baby has such a flat head...and the parents don't seem to notice and i wouldn't dare say anything to them about it. I tell them that they should at least ask the parents about it (which i know it is hard to do) but most of the time they won't..b/c they are afraid of how the parent will react. I'm sure so many parents just figure it'll be fine and do nothing....

Did anyone see Friends last week with 's baby. I was watching...and i could've sworn that the baby had a flat spot on the right side of her head..and i even pointed it out to my husband...and he agreed. I just think that this is going to become the norm...which is probably not a good thing....

Thanks!!!!

In a message dated 11/21/2002 10:33:08 AM Eastern Standard Time, rmanias@... writes:

-

and Dane both probably look better post band than most babies

their ages! It's seems there are dents in all these kids' heads! I

didn't notice my 2 yo nephew's big old flat spot until this summer

when his hair was wet. There is no chance he will be able to wear a

store bought bike or football helmet.

When Dane was out of his band a week a mom commented to me on his

nice round head. Huh? wasn't used to hearing that! LOL! I

focused on that flat spot and facial asymmetry so much that was all

I seemed to notice on the poor little tike!

Dane's mom DOC Grad

[Guest guest]

In a message dated 11/21/2002 10:48:15 AM Eastern Standard Time, rmanias@... writes:

-

Last May a bunch of us from the group emailed friends@... asking

them to put Emma in a band. LOL! Maybe now they really need to!

Dane's mom DOC Grad

Really? That's so funny....hmmm maybe they will deal with that on the show..LOL. That would be sooo good.....so many people watch friends..and it would educate so many people!! That was a good idea..i only hope listen...

[Guest guest]

:

Well early congradulations to Ahhhhh, the famous fear of

regression! Really, I've been with the group over 2 yrs now and have

only heard of maybe 2 cases of regression, and it was nothing

serious. 's older now and as you said is rarely on his back

for any length of time any more, sleeps on his belly and is getting

older, the chance of him regressing is pretty low. Try not to stress

about it. Since you're so concerned with it, are you planning on

getting an exit cast done? This may be a good idea that way in 3 mos

and you do think he's regressed, you can look back at the exit mold

to compare to.

But it sounds like he's rec'd very good correction! Take a deep sigh

of relief and be happy this is almost behind you & !!

You did it!!!

Debbie Abby's mom DOCGrad

MI

> had his appointment today with the craniofacial dr....and he

is no

> longer wearing his helmet....so now he will graduate a week from

today as

> planned.

>

> I'm happy about it but also nervous that his head will get flat

again.

>

> His head only grew a half a centimeter in a month..and the dr said

his head

> is not growing at a rate that they expect...and it hasn't

been....and it's

> better if we get him out of the helmet. Also he said he got good

correction

> (not perfect) but good.....and he said it should continue to grow

and round

> out...

>

> He said we should keep him off the back of his head mostly which is

fine b/c

> he is hardly on the back of his head anymore..he always sleeps on

his

> stomach...he is only on his back for diaper changes...when we are

tickling

> him..and when he gets his bottle..

>

> He wants to see us back in 2 months to see how much 's head

grew...and

> to make sure there is no regression....

>

> I'm so worried that his head is going to flatten again...even today

i am

> constantly checking his head...and analyzing it. I keep thinking

it's

> already flattening..LOL..which i know isn't possible....but

still...LOL.

>

> Anyway..so that's it....he's helmetless....

>

>

> Mom to

[Guest guest]

Congratulations !

-/Logan 9.5 months

PA

> had his appointment today with the craniofacial dr....and he

is no

> longer wearing his helmet....so now he will graduate a week from

today as

> planned.

>

> I'm happy about it but also nervous that his head will get flat

again.

>

> His head only grew a half a centimeter in a month..and the dr said

his head

> is not growing at a rate that they expect...and it hasn't

been....and it's

> better if we get him out of the helmet. Also he said he got good

correction

> (not perfect) but good.....and he said it should continue to grow

and round

> out...

>

> He said we should keep him off the back of his head mostly which is

fine b/c

> he is hardly on the back of his head anymore..he always sleeps on

his

> stomach...he is only on his back for diaper changes...when we are

tickling

> him..and when he gets his bottle..

>

> He wants to see us back in 2 months to see how much 's head

grew...and

> to make sure there is no regression....

>

> I'm so worried that his head is going to flatten again...even today

i am

> constantly checking his head...and analyzing it. I keep thinking

it's

> already flattening..LOL..which i know isn't possible....but

still...LOL.

>

> Anyway..so that's it....he's helmetless....

>

>

> Mom to

[Guest guest]

,

Well it sounds like this is a mixed blessing to you. On the one

hand you are glad that he is done, but on the other hand you

worry that being out of the helmet will cause his head to reflatten.

I think that is a pretty common fear. Regression is pretty rare and

I know that you will be diligent about making sure he stays off the

previously flat side as much as possible. Try not to worry too

much - I know, easy to say, hard to do.

Congratulations on 's pre-graduation!! Enjoy that bare

head!

Marci (Mom to )

Oklahoma

> had his appointment today with the craniofacial dr....and

he is no

> longer wearing his helmet....so now he will graduate a week

from today as

> planned.

>

> I'm happy about it but also nervous that his head will get flat

again.

>

> His head only grew a half a centimeter in a month..and the dr

said his head

> is not growing at a rate that they expect...and it hasn't

been....and it's

> better if we get him out of the helmet. Also he said he got good

correction

> (not perfect) but good.....and he said it should continue to grow

and round

> out...

>

> He said we should keep him off the back of his head mostly

which is fine b/c

> he is hardly on the back of his head anymore..he always

sleeps on his

> stomach...he is only on his back for diaper changes...when we

are tickling

> him..and when he gets his bottle..

>

> He wants to see us back in 2 months to see how much

's head grew...and

> to make sure there is no regression....

>

> I'm so worried that his head is going to flatten again...even

today i am

> constantly checking his head...and analyzing it. I keep thinking

it's

> already flattening..LOL..which i know isn't possible....but

still...LOL.

>

> Anyway..so that's it....he's helmetless....

>

>

> Mom to

[Guest guest]

-

and Dane both probably look better post band than most babies

their ages! It's seems there are dents in all these kids' heads! I

didn't notice my 2 yo nephew's big old flat spot until this summer

when his hair was wet. There is no chance he will be able to wear a

store bought bike or football helmet.

When Dane was out of his band a week a mom commented to me on his

nice round head. Huh? wasn't used to hearing that! LOL! I

focused on that flat spot and facial asymmetry so much that was all

I seemed to notice on the poor little tike!

Dane's mom DOC Grad

[Guest guest]

> Did anyone see Friends last week with 's baby. I was

watching...and i

> could've sworn that the baby had a flat spot on the right side of

her

> head..and i even pointed it out to my husband...and he agreed.

-

Last May a bunch of us from the group emailed friends@... asking

them to put Emma in a band. LOL! Maybe now they really need to!

Dane's mom DOC Grad

[Guest guest]

Thanks Niki!!

LOL..that's so funny..i'm glad i wasn't the only one to notice the baby on Friends....i was beginning to think i was nuts..LOL. How cool would it be if they have a storyline about her having plagio and needing a helmet....

In a message dated 11/21/2002 8:47:37 PM Eastern Standard Time, niki_jay175@... writes:

,

I noticed that too!! I swear I can't look at a baby's head anymore

without critiquing it! Now I'll be watching Friends just to see the

progress of this baby's head!

I'm a bit late with it, but a huge CONGRATS to you and !!! Way

to go, give that nice round noggin some kisses from us!

Niki

Kaylie & Danny (STAR grads)

Phila.,PA

[Guest guest]

> Did anyone see Friends last week with 's baby. I was

watching...and i

> could've sworn that the baby had a flat spot on the right side of

her

> head..and i even pointed it out to my husband...and he agreed.

,

I noticed that too!! I swear I can't look at a baby's head anymore

without critiquing it! Now I'll be watching Friends just to see the

progress of this baby's head!

I'm a bit late with it, but a huge CONGRATS to you and !!! Way

to go, give that nice round noggin some kisses from us!

Niki

Kaylie & Danny (STAR grads)

Phila.,PA

[Guest guest]

Hi ,

Wow! Thanks for sharing the terrific news : ) I sure hope that all continues to go well in the next few months. Another one of our kids, now symptom-free. How exciting!

Take Care,

Georgina

----- Original Message -----

From: Soto

Way to go ! So great to hear good news!

had appointment today with her Rheumy and she's starting to lower her Naprosyn slowly, so that eventually we can get to none. She has showed no symptoms whatsoever for some time now, so they think it's time to start the countdown. If everything keeps going so well they might even plan on taking her off the methotrexate maybe on May. But we'll wait and see, for now, I'm very happy, but I don't want to rush her into anything, I don't want to risk what we have won so far.

Anyways, this was about , and I started venting, sorry, just couldn't help it.

Fantastic news! This has been such a great day, even with our so very cold winter,

Best to all,

(8) poly

[Guest guest]

Misty,

So sorry you had a hard,long,hectic day going from specialist to specialist.

My son has ben seeing Dr Lovell at Cincinnati Childrens(307 miles away)

for just under 4 yrs now for the Enbrel.He's the doc that did the original

trial with the whoping 69 kids that got it FDA approved and is doing the 3yr

safety study that has been going on well over 5yrs and still recruiting.

He knows more about Enbrel and JRA then anyone...Enbrel is fully human unlike

Remicade and the chances of developing antibodies is realy,realy rare.

MTX and Enbrel is superior then either one alone but Enbrel alone is fine and

considering you are just talking about a couple of months I wouldn't be to

worried but with these drugs there is always that nagging in the back of your

mind.

Dr.Lovell is realy cool, sweet and nice and his card gives his direct office

number call him at (513)636-8071.The best time is starting around 5:00 eastern.

Hope this helps

Becki and 7 systemic

[Guest guest]

Hi Misty,

Yes. We've heard that one before, too. " His body won't be able to be healthy and

pain free, so long as we keep giving him all these toxins. " Actually, it was a

physical therapist who told us that, last time. Gimme' a break. If they only

knew, right?

I hope the Enbrel will work quickly and have feeling much better very

soon. Let us know how it goes, okay?

Aloha,

Georgina

Re: 's appointment

We have decided to restart the Enbrel without the mtx. As much as

has enjoyed the respite from needles, his joints are showing

how much he does need the meds. So much for the theory that it's really

the meds making him sick. ( A comment from a lady at work)

Misty & (7, systemic)

>

> --Misty,

>

> Im glad to read has been doing better than expected while

> off the drugs, I hope he continues to hold on until he can go back

> on them.

>

> hugs Helen and (8,systemic)

[Guest guest]

I flucuate between replying that if he'd been healthy and pain-free, he

wouldn't have been put on the meds and just ignoring the comments. It

depends on my mood at the moment and my assessment of the intelligence

of the person. If I don't think their intellect is capable of handling

the info, I'm not going to bother trying to educate them. I'm afraid my

reply to the co-worker who said that he'd be better off without meds

was a sarcastic " Yes, I can see how much living healthy has done for

you " .

Misty & (7, systemic)

>

> Hi Misty,

>

> Yes. We've heard that one before, too. " His body won't be able to be

healthy and pain free, so long as we keep giving him all these toxins. "

Actually, it was a physical therapist who told us that, last time.

Gimme' a break. If they only knew, right?

>

> I hope the Enbrel will work quickly and have feeling much

better very soon. Let us know how it goes, okay?

>

> Aloha,

> Georgina