Re: New here! Need support !!

[Guest guest]

Jeanette, welcome to the group. What a little trooper Camille is.

This can be a very frustrating and overwhelming endeavor for you and

your family, but everyone here is very supportive in whatever you

choose to do. We have either been there already or just beginning

with you. Where are you located? Maybe there is someone in your

area that can help you with referrals or and PT. Did the ped not

refer you to PT for stretches, etc?

Dustie

> My daughter, 4 mos, was diagnosed with plagio and torticollis by

> ped, we were given instructions for exercise and repositioning. I

> did them the 1st night and she was screaming, red faced! My husband

> does not want me to do them with her anymore. I gave same

> instructions to daycare who tried to do them with her and now they

> have said they won't do them for fear of hurting her. In a pic of

an

> article given to me by ped, she resembles a child diagnosed as

> severe. I called the ped back and asked for more, he gave a

> referral. we have an appt with a neuro surgeon but not for another

2

> weeks. ARGH!!

> I have read a little about this condtion and am very upset! She has

> other 'risk factors': small and malformed maternal pelvis,

premature

> and low birth weight, paucity of amniotic fluid. I have also just

> learned that she had a 2 vessel cord. She was born slow to breath

> and was in the NICU for 5 days also with jaundice. I am very

> concerned we are very low income and are on medical card. We also

> live in a VERY rural area and just to take her to neuro surgeon is

1

> hour away driving. I need LOTS of support! I am very happy to have

> found your group. Thank you. Please feel free to email me

> individually.

> jeanette and baby Camille

[Guest guest]

Hi Jeanette,

Welcome to the group, we can offer you a lot of support. It is very

easy to give up on the torticollis exercises when your baby gets so

upset but you aren't hurting her. Making her angry sure, but not

hurting. Please don't give up on the exercises, they are very

important. Are you seeing a physical therapist? They can show you

many different ways to do the stretches, kissing and tickling while

doing them always helps too.

What part of the country do you live in? Maybe someone from the

group has seen the neuro and can tell you what to expect.

Natasha

> My daughter, 4 mos, was diagnosed with plagio and torticollis by

> ped, we were given instructions for exercise and repositioning. I

> did them the 1st night and she was screaming, red faced! My husband

> does not want me to do them with her anymore. I gave same

> instructions to daycare who tried to do them with her and now they

> have said they won't do them for fear of hurting her. In a pic of

an

> article given to me by ped, she resembles a child diagnosed as

> severe. I called the ped back and asked for more, he gave a

> referral. we have an appt with a neuro surgeon but not for another

2

> weeks. ARGH!!

> I have read a little about this condtion and am very upset! She has

> other 'risk factors': small and malformed maternal pelvis,

premature

> and low birth weight, paucity of amniotic fluid. I have also just

> learned that she had a 2 vessel cord. She was born slow to breath

> and was in the NICU for 5 days also with jaundice. I am very

> concerned we are very low income and are on medical card. We also

> live in a VERY rural area and just to take her to neuro surgeon is

1

> hour away driving. I need LOTS of support! I am very happy to have

> found your group. Thank you. Please feel free to email me

> individually.

> jeanette and baby Camille

[Guest guest]

Hi Jeanette,

Welcome to the group! 2 weeks to get in to see a speialist is,

excelelnt. It usually takes 6-8 weeks. So you're ahead of the game. A

lot of babies cry when they first start getting stretched. That is

unfortunately the way to reslove torticollis. Hopefully your ped will

send her to physical therapy, you can ask him/her to do so. You can

also contact Early Intervention in you area, it's free help. Tort

babies usually qualify. Please keep us posted.

> My daughter, 4 mos, was diagnosed with plagio and torticollis by

> ped, we were given instructions for exercise and repositioning. I

> did them the 1st night and she was screaming, red faced! My husband

> does not want me to do them with her anymore. I gave same

> instructions to daycare who tried to do them with her and now they

> have said they won't do them for fear of hurting her. In a pic of

an

> article given to me by ped, she resembles a child diagnosed as

> severe. I called the ped back and asked for more, he gave a

> referral. we have an appt with a neuro surgeon but not for another

2

> weeks. ARGH!!

> I have read a little about this condtion and am very upset! She has

> other 'risk factors': small and malformed maternal pelvis,

premature

> and low birth weight, paucity of amniotic fluid. I have also just

> learned that she had a 2 vessel cord. She was born slow to breath

> and was in the NICU for 5 days also with jaundice. I am very

> concerned we are very low income and are on medical card. We also

> live in a VERY rural area and just to take her to neuro surgeon is

1

> hour away driving. I need LOTS of support! I am very happy to have

> found your group. Thank you. Please feel free to email me

> individually.

> jeanette and baby Camille

[Guest guest]

Hello and welcome to the group. I see that you have received some

replies already concerning EI and the plagio itself, so I won't

repeat them...

I can really relate to your tort dilemna. My son hated his stretches

more than anything (except tummy time...sigh....) We ended up doing

his actual stretches while he slept at night, because he fought us so

hard while awake. It was very hard on me, and despite the

reassurance from Aidan's therapists that the stretches did not " hurt "

him, I was convinced that I was torturing him. What I came to

realize was that he was just one stubborn baby, with a fiery Irish

temper, and if he did not want to do something, he was going to make

it known and make it known loudly. On the other had, I could get him

to do the strenghtening exercises with no problem, especially with a

little distraction (TV, my dh, a cool toy, etc.)

Does your daughter scream when you stretch her, or when you do

strengthening exercises?

Let me know if I can answer any other tort related question that you

might have! After 7 months of therapy, I have probably asked every

question possible. LOL

- mom to Aidan

STARband 08/26/03 12/19/03

GR MI

> My daughter, 4 mos, was diagnosed with plagio and torticollis by

> ped, we were given instructions for exercise and repositioning. I

> did them the 1st night and she was screaming, red faced! My husband

> does not want me to do them with her anymore. I gave same

> instructions to daycare who tried to do them with her and now they

> have said they won't do them for fear of hurting her. In a pic of

an

> article given to me by ped, she resembles a child diagnosed as

> severe. I called the ped back and asked for more, he gave a

> referral. we have an appt with a neuro surgeon but not for another

2

> weeks. ARGH!!

> I have read a little about this condtion and am very upset! She has

> other 'risk factors': small and malformed maternal pelvis,

premature

> and low birth weight, paucity of amniotic fluid. I have also just

> learned that she had a 2 vessel cord. She was born slow to breath

> and was in the NICU for 5 days also with jaundice. I am very

> concerned we are very low income and are on medical card. We also

> live in a VERY rural area and just to take her to neuro surgeon is

1

> hour away driving. I need LOTS of support! I am very happy to have

> found your group. Thank you. Please feel free to email me

> individually.

> jeanette and baby Camille