discouraged

[Guest guest]

Dear Jan, I think it would be easier for you as a parent to be patient

on your own body more than your own child's. It is painful to see

our children suffer so. My own daughter now has a heart condition and I

worry so about her. But, Jan, remember that many here did not see

ANY progress at all for two to two and a half years but it did come.

Patience is the best advice I can give you. Dr. Sinnott is so kind

to talk to you and even though you find it difficult, I find his advice

good enough to be heeded.

Your positive step in changing some of your diet

is to be applauded. Certainly accolades to your son who is changing

a young person's naturally terrible diet if he is willing to do this.

And big, big hats off to you as a mother for the effort that in this era,

not all mothers would be willing to make.

Are you avoid sugar? Dairy? Wheat?

Are you watching these things to help him learn to listen to his body so

he knows what triggers his pain?

Have you tried the ascorbic acid yet? I know

it was only yesterday we "talked" but wondered if you had tried this yet.

Actually, I am in brain fog and "think" we talked yesterday so please forgive

me if it was another day.

I am sending enormous ((((((((((hugs)))))))) to

you and your precious son and some prayers along the way, also. Love,

Jan Gunter wrote:

Hi all, I'm

beginning to be discouraged about my son's progress (or lack of it).

He is still on 30 mg. of prednisone, and when we took it down to 28 and

then 27, he was not able to go to school every day. He felt pretty

lousy - not just in his joints, but lousy all over. (He has systemic

JRA). This week we're alternating between 30 and 29 mg. He's

been on minocycline for 6 months now, and has been on prednisone that long

as well. The prednisone is wonderful because it keeps him in school

and functioning relatively normally, but obviously we don't want him on

this very long. In my opinion, it's already been too long.

Dr. Sinnott (whom I talk to on the phone only) has said to just keep doing

what we're doing and to be patient. I don't mind being patient, but

my fear is that this is not going to work for him and we're on the wrong

track. We've recently started drinking fresh juiced vegetables and

eating many more vegetables and drinking Barley Green to help boost his

body and because it all makes good sense for anybody to do. I know

that you guys don't have the answers for me, but I just need to voice this.

We continue to take it a day at a time, and his spirits are good, but it's

been a year since he got sick, and it does wear on us. Any wisdom

or direction from you guys would be appreciated. Jan

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

after trying Enbrel for 3 months and no appreciable response,

I was just prescribed Humira. Anyone else in this situation?

I've been on MTX since last Sept. Is there any hope for me?!

Joanne

[Guest guest]

Yes, Joanne, there is hope. Even though intuitively it doesn't make much

sense, people who fail one TNF inhibitor can be successfully treated

with a different one.

I'm sorry the Enbrel didn't work for you.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] discouraged

> after trying Enbrel for 3 months and no appreciable response,

> I was just prescribed Humira. Anyone else in this situation?

> I've been on MTX since last Sept. Is there any hope for me?!

>

> Joanne

[Guest guest]

try not to worry too much, you are likely to see improvements. Unfortunately

the tort can be an ongoing battle, but it sounds like you have a better PT now??

My son had tort which is generally resolved, I had to switch PT also. He wore

his helmet 6-9 mos old, but did get alot of ear correction. Actually the ortho

says the measurments are not much differnt but it just looks better due to the

change in circumfrence of the head. Not sure I understand but either way he

looks so much better to me. I am sure you will see improvement, even if not as

much as you hope for, even a little makes a big difference.

le

>

> I was ready, willing, and, eager for my son, , to begin his treatment

in his DOCBand at Cranial Technologies in Connecticut. However, today when I

took him for his DSI scan I was very discouraged by our orthoist. When I asked

her to show me pictures of other children's cases who are my son's age ( he will

begin treatment at 11 mos.)she brought me a thick book full of photos but could

only show me one child his age with Torticollis in the whole book. The outcome

in this child was minimal and she pretty much told me that 's chage would

be minimal as well. My biggest concern is the asymmetry of his ears. His left

ear is much more foward on the face than the right ear. She told me not expect

much change in the aysymmetry of his face. She said it is more likely to see

correction in the back of his head, although, because of his age it may not be a

lot. He was measaured at 15mm, which by looking at other's children's number on

here, I assume is severe. I have done research on Torticollis and I have read

posts from many other mothers who say physical therapy did not work to correct

the tilt. Both our pedi & pt are insisting that will not need surgery

but I see absolutely no change in his tilt and we've been at this for a while. I

am so frustrated and angry with 's pediatrcian for sending us to our

first therapist who had absolutely no experience with child torticollis (which

we did not know until weeks into treatment). I am so worried that my precious

baby boy will grow up unhappy with his face and his head, as I have read many

stories from adults with Tort & Plagio who have wished they were treated as an

infant. I am still going to go through with the DOCBand, I couldn't live with

myself if I didn't atleast try but my confidence in it's success has dropped

tremendously after today's appointment. Do any of you have experience with both

severe tort & plagio and do any of you know when the decission should be made

whether or not Mikey will need surgery to correct his head tilt?

>

> Thank you for reading,

> - mother of 10 month old twins (Tort & Plagio) & Audrey

>

[Guest guest]

Sorry to hear you are struggling so much with tort. There is a separate

torticollis group in you may want to look for. Of course there are lots of

tort parents here too, but the other group might help. I have heard of surgery

for tort, but very rarely. Hopefully the head will get good correction from the

band, and the tort will respond to PT. I know it is an ongoing battle. We were

lucky that we didn't have to deal with it.

-christine

sydney, 4yrs, starband grad

>

> I was ready, willing, and, eager for my son, , to begin his treatment

in his DOCBand at Cranial Technologies in Connecticut. However, today when I

took him for his DSI scan I was very discouraged by our orthoist. When I asked

her to show me pictures of other children's cases who are my son's age ( he will

begin treatment at 11 mos.)she brought me a thick book full of photos but could

only show me one child his age with Torticollis in the whole book. The outcome

in this child was minimal and she pretty much told me that 's chage would

be minimal as well. My biggest concern is the asymmetry of his ears. His left

ear is much more foward on the face than the right ear. She told me not expect

much change in the aysymmetry of his face. She said it is more likely to see

correction in the back of his head, although, because of his age it may not be a

lot. He was measaured at 15mm, which by looking at other's children's number on

here, I assume is severe. I have done research on Torticollis and I have read

posts from many other mothers who say physical therapy did not work to correct

the tilt. Both our pedi & pt are insisting that will not need surgery

but I see absolutely no change in his tilt and we've been at this for a while. I

am so frustrated and angry with 's pediatrcian for sending us to our

first therapist who had absolutely no experience with child torticollis (which

we did not know until weeks into treatment). I am so worried that my precious

baby boy will grow up unhappy with his face and his head, as I have read many

stories from adults with Tort & Plagio who have wished they were treated as an

infant. I am still going to go through with the DOCBand, I couldn't live with

myself if I didn't atleast try but my confidence in it's success has dropped

tremendously after today's appointment. Do any of you have experience with both

severe tort & plagio and do any of you know when the decission should be made

whether or not Mikey will need surgery to correct his head tilt?

>

> Thank you for reading,

> - mother of 10 month old twins (Tort & Plagio) & Audrey

>

[Guest guest]

Jen

Mom to Luli - 4 yrs old

Torticollis, Plagio, Syringomyelia

- I want to say - I understand your frustration! It's hard when you see that your baby needs help and they don't get it right away!

My dd also has a persistant tilt. But hers is not muscular. We didn't know that and did PT for months and months, had drs tell us she was "all better, when her tilt was clearly still there, etc. We found out that she had a spinal abnormality and her cranio-cervical junction is asymmetrical. No amount of PT would have helped my dd. :-(

We did have 2 bands - from 6-12mo - and we saw a good improvement... even in her ears!!! :-) I think it has to so with the skull growth.

I can understand you feeling discouraged after not seeing other babies with tort in the book... but I fnd that to be abnormal. I would think that there would be more babies with tort in there.... But maybe it is because your son is 11 mo. old. At that age, maybe most have had the tort resolved.

I'm not saying there is something more going on with your son... but have they done a CT or MRI of his neck/spine/brain?

That might be your next step, just to see if there might be something more going on... also have his eyes checked, we did that to, looking for occular tort.

Hope this helps... and keep us updated!!!

On Fri, Mar 19, 2010 at 8:22 PM, <jsillisbcglobal (DOT) net> wrote:

I was ready, willing, and, eager for my son, , to begin his treatment in his DOCBand at Cranial Technologies in Connecticut. However, today when I took him for his DSI scan I was very discouraged by our orthoist. When I asked her to show me pictures of other children's cases who are my son's age ( he will begin treatment at 11 mos.)she brought me a thick book full of photos but could only show me one child his age with Torticollis in the whole book. The outcome in this child was minimal and she pretty much told me that 's chage would be minimal as well. My biggest concern is the asymmetry of his ears. His left ear is much more foward on the face than the right ear. She told me not expect much change in the aysymmetry of his face. She said it is more likely to see correction in the back of his head, although, because of his age it may not be a lot. He was measaured at 15mm, which by looking at other's children's number on here, I assume is severe. I have done research on Torticollis and I have read posts from many other mothers who say physical therapy did not work to correct the tilt. Both our pedi & pt are insisting that will not need surgery but I see absolutely no change in his tilt and we've been at this for a while. I am so frustrated and angry with 's pediatrcian for sending us to our first therapist who had absolutely no experience with child torticollis (which we did not know until weeks into treatment). I am so worried that my precious baby boy will grow up unhappy with his face and his head, as I have read many stories from adults with Tort & Plagio who have wished they were treated as an infant. I am still going to go through with the DOCBand, I couldn't live with myself if I didn't atleast try but my confidence in it's success has dropped tremendously after today's appointment. Do any of you have experience with both severe tort & plagio and do any of you know when the decission should be made whether or not Mikey will need surgery to correct his head tilt?

Thank you for reading,

- mother of 10 month old twins (Tort & Plagio) & Audrey

[Guest guest]

,Hello, sorry to hear of your son's difficulties. My 8-month-old daughter had severe tort. She did not receive treatment until over six months of ago(undiagnosed by ped.) It was so bad, Cranial Tech said they would have a hard time fitting her with a band. However, CT said with aggressiv PT, we could see a big improvement in 2-3 weeks. They were right--we saw improvement in musle tightness, range of motion and less tilt after about 3 weekly sessions, but I was very,very aggressive with home exercises.Our PT(not with CT) is very exp'd with tort. You should definitely see some improvement before long. still tilts, esp. when sick or teething, but the PT says it's more habit (comfort zone)because the muscle is much more loose. The habit may take much, much longer to

correct. The PT says to expect to continue exercises until about 18 mos. and maybe beyond. Resolving tort can be a very long process-years even. Don't be discouraged. Good luck to you and your son.AmyFrom: <jsilli@...>Plagiocephaly Sent: Fri, March 19, 2010 9:22:08 PMSubject: discouraged

I was ready, willing, and, eager for my son, , to begin his treatment in his DOCBand at Cranial Technologies in Connecticut. However, today when I took him for his DSI scan I was very discouraged by our orthoist. When I asked her to show me pictures of other children's cases who are my son's age ( he will begin treatment at 11 mos.)she brought me a thick book full of photos but could only show me one child his age with Torticollis in the whole book. The outcome in this child was minimal and she pretty much told me that 's chage would be minimal as well. My biggest concern is the asymmetry of his ears. His left ear is much more foward on the face than the right ear. She told me not expect much change in the aysymmetry of his face. She said it is more likely to see correction in the back of his head, although, because of his age it may not be a lot. He was measaured at 15mm, which by looking at other's children's number on here, I

assume is severe. I have done research on Torticollis and I have read posts from many other mothers who say physical therapy did not work to correct the tilt. Both our pedi & pt are insisting that will not need surgery but I see absolutely no change in his tilt and we've been at this for a while. I am so frustrated and angry with 's pediatrcian for sending us to our first therapist who had absolutely no experience with child torticollis (which we did not know until weeks into treatment). I am so worried that my precious baby boy will grow up unhappy with his face and his head, as I have read many stories from adults with Tort & Plagio who have wished they were treated as an infant. I am still going to go through with the DOCBand, I couldn't live with myself if I didn't atleast try but my confidence in it's success has dropped tremendously after today's appointment. Do any of you have experience with both severe tort & plagio

and do any of you know when the decission should be made whether or not Mikey will need surgery to correct his head tilt?

Thank you for reading,

- mother of 10 month old twins (Tort & Plagio) & Audrey

[Guest guest]

,

I know what you are going through, you story sounds exactly likey mine. I

actually used the internet to determine that my son has tort and he has a very

flat spot on the right side of his head and his facial features are also not

symmetrical. He is 18 months old now and we have done the neck stretches that

have not helped much and trust me, I was very persistant with them! I have had

him to several plastic surgeons who all refused to put him in a helmet! I am so

mad!!! I have been dealing with this since he was about 4 months old. So now I

am trying to find reconstructive options that are avaliable so that when he is a

little older (10 years?) we can get his head shaped fixed. I have heard of

implants that can be put in under the scalp but I can't find anywhere in the US

that does it. I don't want him to hate his face and although I think he is

beautiful, kids are mean and I don't want him to be teased!! Good luck with your

little one!

Brittney

>

> ,

>

> Hello, sorry to hear of your son's difficulties. My 8-month-old daughter

had severe tort. She did not receive treatment until over six months of

ago(undiagnosed by ped.) It was so bad, Cranial Tech said they would have a hard

time fitting her with a band. However, CT said with aggressiv PT, we could see a

big improvement in 2-3 weeks. They were right--we saw improvement in musle

tightness, range of motion and less tilt after about 3 weekly sessions, but I

was very,very aggressive with home exercises.Our PT(not with CT) is very exp'd

with tort. You should definitely see some improvement before long. still

tilts, esp. when sick or teething, but the PT says it's more habit (comfort

zone)because the muscle is much more loose. The habit may take much, much longer

to correct. The PT says to expect to continue exercises until about 18 mos. and

maybe beyond. Resolving tort can be a very long process-years even. Don't be

discouraged. Good luck to

> you and your son.

>

> Amy

>

>

>

>

>

> ________________________________

> From: <jsilli@...>

> Plagiocephaly

> Sent: Fri, March 19, 2010 9:22:08 PM

> Subject: discouraged

>

>

> I was ready, willing, and, eager for my son, , to begin his treatment

in his DOCBand at Cranial Technologies in Connecticut. However, today when I

took him for his DSI scan I was very discouraged by our orthoist. When I asked

her to show me pictures of other children's cases who are my son's age ( he will

begin treatment at 11 mos.)she brought me a thick book full of photos but could

only show me one child his age with Torticollis in the whole book. The outcome

in this child was minimal and she pretty much told me that 's chage would

be minimal as well. My biggest concern is the asymmetry of his ears. His left

ear is much more foward on the face than the right ear. She told me not expect

much change in the aysymmetry of his face. She said it is more likely to see

correction in the back of his head, although, because of his age it may not be a

lot. He was measaured at 15mm, which by looking at other's children's number on

here, I assume is

> severe. I have done research on Torticollis and I have read posts from many

other mothers who say physical therapy did not work to correct the tilt. Both

our pedi & pt are insisting that will not need surgery but I see

absolutely no change in his tilt and we've been at this for a while. I am so

frustrated and angry with 's pediatrcian for sending us to our first

therapist who had absolutely no experience with child torticollis (which we did

not know until weeks into treatment). I am so worried that my precious baby boy

will grow up unhappy with his face and his head, as I have read many stories

from adults with Tort & Plagio who have wished they were treated as an infant. I

am still going to go through with the DOCBand, I couldn't live with myself if I

didn't atleast try but my confidence in it's success has dropped tremendously

after today's appointment. Do any of you have experience with both severe tort &

plagio and do any of you know

> when the decission should be made whether or not Mikey will need surgery to

correct his head tilt?

>

> Thank you for reading,

> - mother of 10 month old twins (Tort & Plagio) & Audrey

>

[Guest guest]

,

I know what you are going through, you story sounds exactly likey mine. I

actually used the internet to determine that my son has tort and he has a very

flat spot on the right side of his head and his facial features are also not

symmetrical. He is 18 months old now and we have done the neck stretches that

have not helped much and trust me, I was very persistant with them! I have had

him to several plastic surgeons who all refused to put him in a helmet! I am so

mad!!! I have been dealing with this since he was about 4 months old. So now I

am trying to find reconstructive options that are avaliable so that when he is a

little older (10 years?) we can get his head shaped fixed. I have heard of

implants that can be put in under the scalp but I can't find anywhere in the US

that does it. I don't want him to hate his face and although I think he is

beautiful, kids are mean and I don't want him to be teased!! Good luck with your

little one!

Brittney

>

> ,

>

> Hello, sorry to hear of your son's difficulties. My 8-month-old daughter

had severe tort. She did not receive treatment until over six months of

ago(undiagnosed by ped.) It was so bad, Cranial Tech said they would have a hard

time fitting her with a band. However, CT said with aggressiv PT, we could see a

big improvement in 2-3 weeks. They were right--we saw improvement in musle

tightness, range of motion and less tilt after about 3 weekly sessions, but I

was very,very aggressive with home exercises.Our PT(not with CT) is very exp'd

with tort. You should definitely see some improvement before long. still

tilts, esp. when sick or teething, but the PT says it's more habit (comfort

zone)because the muscle is much more loose. The habit may take much, much longer

to correct. The PT says to expect to continue exercises until about 18 mos. and

maybe beyond. Resolving tort can be a very long process-years even. Don't be

discouraged. Good luck to

> you and your son.

>

> Amy

>

>

>

>

>

> ________________________________

> From: <jsilli@...>

> Plagiocephaly

> Sent: Fri, March 19, 2010 9:22:08 PM

> Subject: discouraged

>

>

> I was ready, willing, and, eager for my son, , to begin his treatment

in his DOCBand at Cranial Technologies in Connecticut. However, today when I

took him for his DSI scan I was very discouraged by our orthoist. When I asked

her to show me pictures of other children's cases who are my son's age ( he will

begin treatment at 11 mos.)she brought me a thick book full of photos but could

only show me one child his age with Torticollis in the whole book. The outcome

in this child was minimal and she pretty much told me that 's chage would

be minimal as well. My biggest concern is the asymmetry of his ears. His left

ear is much more foward on the face than the right ear. She told me not expect

much change in the aysymmetry of his face. She said it is more likely to see

correction in the back of his head, although, because of his age it may not be a

lot. He was measaured at 15mm, which by looking at other's children's number on

here, I assume is

> severe. I have done research on Torticollis and I have read posts from many

other mothers who say physical therapy did not work to correct the tilt. Both

our pedi & pt are insisting that will not need surgery but I see

absolutely no change in his tilt and we've been at this for a while. I am so

frustrated and angry with 's pediatrcian for sending us to our first

therapist who had absolutely no experience with child torticollis (which we did

not know until weeks into treatment). I am so worried that my precious baby boy

will grow up unhappy with his face and his head, as I have read many stories

from adults with Tort & Plagio who have wished they were treated as an infant. I

am still going to go through with the DOCBand, I couldn't live with myself if I

didn't atleast try but my confidence in it's success has dropped tremendously

after today's appointment. Do any of you have experience with both severe tort &

plagio and do any of you know

> when the decission should be made whether or not Mikey will need surgery to

correct his head tilt?

>

> Thank you for reading,

> - mother of 10 month old twins (Tort & Plagio) & Audrey

>