Re: Questions about treatment

[Guest guest]

Hi Karyn. My name is and I live in Burien WA. We took my son

Preston to see the specialist at Childrens and met up with the nurse

pract. also. That is just how they do things there. I don't suppose

we will ever see a doctor but I don't think they think that plagio is

a serious problem. My son's is mild/moderate and we plan to helmet

him when he's 6 mo. old (in 1 mo.). There are no other places to go

around here. I've heard the DOC band is great but the closest clinic

to us is Calif. which we couldn't afford to do. I'm hopeful to get

enough improvement out of the helmet. I know what you mean about

friends and family. No one seems to understand. I'm grateful for

this group too. My hubby and I think that it's important to do what

we can for his head shape and facial assymetry. We are also

repositioning. I wish you the best. Keep us posted about your

helmet experience as we will be following closely behind you.

mommy to Preston

> I am new to internet groups such as this, but feel fortunate to

have

> found this one! Thank you for sharing your stories and offering

> support for parents in this way. I haven't met any other parents

> with children who have plagio and was feeling a bit lost in the

dark

> about it. We think that we will probably go ahead and get the

> helmet for our daughter, (6months) but it is hard to deal

> with friends and family that don't understand what the big deal

is.

> They don't really notice the flatness of her head and wonder why we

> want to subject her to wearing a helmet for several months. I am

> still interested in hearing from any parents that didn't use the

> helmet therapy. Also, we were referred to a " specialist " at the

> cranio-facial clinic at Children's Hospital in Seattle but were

only

> seen by an nurse practioner who took measurements and consulted

with

> us. Did anyone else in Seattle have a similar experience? Should

> my daughter be seen by an acutal M.D.?

>

> Karyn Sasten

> Duvall, Washington

[Guest guest]

Hi, and welcome to the board. I'm sure you will get some responses

from parents that have gone to Seattle with good results. There is

also a mom on the PositionalPlagioSupport board that can be

accessed thru cappskids.org by the name of le (mytwingirls) who

just went through this debate about passive at Children's Hospital v.

active elsewhere. She decided to go with an active band through a

company called Hangar Orthotics. You might want to post on that

board also to find out about this alternative. Good luck.

Candy, mom to (DOCbanded 10/5/01)

land

> I am new to internet groups such as this, but feel fortunate to

have

> found this one! Thank you for sharing your stories and offering

> support for parents in this way. I haven't met any other parents

> with children who have plagio and was feeling a bit lost in the

dark

> about it. We think that we will probably go ahead and get the

> helmet for our daughter, (6months) but it is hard to deal

> with friends and family that don't understand what the big deal

is.

> They don't really notice the flatness of her head and wonder why we

> want to subject her to wearing a helmet for several months. I am

> still interested in hearing from any parents that didn't use the

> helmet therapy. Also, we were referred to a " specialist " at the

> cranio-facial clinic at Children's Hospital in Seattle but were

only

> seen by an nurse practioner who took measurements and consulted

with

> us. Did anyone else in Seattle have a similar experience? Should

> my daughter be seen by an acutal M.D.?

>

> Karyn Sasten

> Duvall, Washington

[Guest guest]

Hi Karyn:

I'm glad was able to reply to your post with her personal

experience at the same hospital you're going for treatment.

It is hard dealing with parents, friends, strangers who don't

understand why you're putting your baby in that hunk of plastic!

Thankfully I rec'd great support from my family, mainly becuz Abby's

head was so misshapen. If anyone ever questions you, ask them if

they would have put braces on your teeth (maybe they did!) if they

were buck or crooked? You know they would have, these bands and

helmets are really no different at all! The main difference is that

helmets do not cause ANY pain to the child, where braces sometimes do

on your teeth.

Plagio really is becoming so common today and many cases are treated

with a helmet or band. Once you receive your helmet, you'll be

surprised how many stories you might hear " oh, my grandson wore

that " .....you're definitely not alone.

Be sure to keep us updated on & let us know when/if she

receives her helmet. Good luck

Debbie Abby's mom DOCgrad

MI

> I am new to internet groups such as this, but feel fortunate to

have

> found this one! Thank you for sharing your stories and offering

> support for parents in this way. I haven't met any other parents

> with children who have plagio and was feeling a bit lost in the

dark

> about it. We think that we will probably go ahead and get the

> helmet for our daughter, (6months) but it is hard to deal

> with friends and family that don't understand what the big deal

is.

> They don't really notice the flatness of her head and wonder why we

> want to subject her to wearing a helmet for several months. I am

> still interested in hearing from any parents that didn't use the

> helmet therapy. Also, we were referred to a " specialist " at the

> cranio-facial clinic at Children's Hospital in Seattle but were

only

> seen by an nurse practioner who took measurements and consulted

with

> us. Did anyone else in Seattle have a similar experience? Should

> my daughter be seen by an acutal M.D.?

>

> Karyn Sasten

> Duvall, Washington

[Guest guest]

Hi Trina - I am on MTX also and will be going for my 3rd treatment on 27 of

March for Remicade. So far there is a major difference in my Psoriasis , but it

has done absolutely nothing for the pain of PA and I cannot sleep also. I'm in

pain 24 /7 . I am 46 and feel 96. Standing, sitting and walking are limited to

just minutes. Is there any hope for us in finding some sort of Relief. I would

love to have a good night sleep and to be pain free even if only for an hour.

Our weather has been exactly as yours. If someone out there can suggest

something that is giving them relief from pain , I certainly would love to hear

from them. I hope also that this is not how we will spend the rest of our

lives. I just keep telling myself that the next treatment will give me some

relief .That's all I got left is hope !

Good luck to you