New/Intro

[Guest guest]

Hi, I just wanted to introduce myself and my family. I am Mimi mom to 5 special needs children (all biological). My youngest son, is 8 months old and was dx'd with plagio at birth. He still has it pretty bad. His pediatrician has officially dx'd him with "dysmorphic facial features" which really urkes me. is considered medically fragile with other conditions such as plagiocephaly, asthma, static encephalmyopathy, tracheomalacia, and torticollis. He developmentally is around 5 months delayed.

I have spoken to our doctors who all seem to be just a tad bit "backwards" regarding my sons condition. No one wants to tell me the truth about him and his future, and they hate me asking questions. So I think it is time for me to change doctors.

Thanks for listening to me.

Mimi... mom to:

Bethany 15 - emotional issues

Lauryn 12 - down syndrome

Maurra 6 - mild cerebral palsy

Garrett 20 mo - heart condition/dev.delays

8 mo - medically fragile

and wife to Jon, all living in WV

[Guest guest]

Mimi,

I also

wanted to welcome you. Where are

you in WV? I was born and raised

in Pittsburgh and my grandparents lived in Bridgeport, WV.

It sounds

as though you are tremendously busy and that you have a very special family

with a very caring mom! Many

people have had to change doctors throughout this process. If you feel as though your doctor is

holding back from you, that’s a definite reason to consider changing. It’s stressful enough to have a child

with medical needs, let alone to have medical personnel who aren’t taking the

time to thoroughly explain things to you.

Please

know that you can ask any question of this group and find support. I’ve been here only a short time but

this group has been a gift from God for me. It helps me to know that I’m not alone and you are not alone

either.

Have you

started any kind of treatment for ’s plagio and tort? Therapy? Banding process?

Repositioning?

& JD (casted for DOCband)

TX

-----Original

Message-----

From: windycitymimi@...

[mailto:windycitymimi@...]

Sent: Tuesday, February 25, 2003

6:59 AM

Plagiocephaly

Subject: New/Intro

Hi, I just wanted to introduce myself

and my family. I am Mimi mom to 5 special needs children (all

biological). My youngest son, is 8 months old and was dx'd with

plagio at birth. He still has it pretty bad. His pediatrician has

officially dx'd him with " dysmorphic facial features " which really

urkes me. is considered medically fragile with other conditions

such as plagiocephaly, asthma, static encephalmyopathy, tracheomalacia, and

torticollis. He developmentally is around 5 months delayed.

I have spoken to our doctors who all seem to be just a tad bit

" backwards " regarding my sons condition. No one wants to tell

me the truth about him and his future, and they hate me asking questions.

So I think it is time for me to change doctors.

Thanks for listening to me.

Mimi... mom to:

Bethany 15 - emotional issues

Lauryn 12 - down syndrome

Maurra 6 - mild cerebral palsy

Garrett 20 mo - heart condition/dev.delays

8 mo - medically fragile

and wife to Jon, all living in WV

For more plagio info

[Guest guest]

Hi Mimi,

I agree with you 100%, it is time to find new doctors. It is YOUR

right to ask any question you have regarding your children and it's

your doctors responsibility to answer them!! My 4 yo was recently

diagnosed with mild Cerebral Palsy, she sees a lot of doctors and I

have to tell you, I question them on everything. She is my daughter

and I want to know it all! I'm sure I must get on their nerves (even

if they don't show it)with all of my questions, but it is part of

their job to answer them.

Are you looking to band ?

> Hi, I just wanted to introduce myself and my family. I am Mimi mom

to 5

> special needs children (all biological). My youngest son,

is 8 months

> old and was dx'd with plagio at birth. He still has it pretty

bad. His

> pediatrician has officially dx'd him with " dysmorphic facial

features " which

> really urkes me. is considered medically fragile with other

> conditions such as plagiocephaly, asthma, static encephalmyopathy,

> tracheomalacia, and torticollis. He developmentally is around 5

months

> delayed.

> I have spoken to our doctors who all seem to be just a tad

bit " backwards "

> regarding my sons condition. No one wants to tell me the truth

about him and

> his future, and they hate me asking questions. So I think it is

time for me

> to change doctors.

>

> Thanks for listening to me.

> Mimi... mom to:

> Bethany 15 - emotional issues

> Lauryn 12 - down syndrome

> Maurra 6 - mild cerebral palsy

> Garrett 20 mo - heart condition/dev.delays

> 8 mo - medically fragile

> and wife to Jon, all living in WV

[Guest guest]

I would definitely chang doctors. If they are not willing to answer questions I would find someone who is! The reason we are all hear is to listen and ry to help others.

Angie and Jenna(STARband grad)

New/Intro

Hi, I just wanted to introduce myself and my family. I am Mimi mom to 5 special needs children (all biological). My youngest son, is 8 months old and was dx'd with plagio at birth. He still has it pretty bad. His pediatrician has officially dx'd him with "dysmorphic facial features" which really urkes me. is considered medically fragile with other conditions such as plagiocephaly, asthma, static encephalmyopathy, tracheomalacia, and torticollis. He developmentally is around 5 months delayed. I have spoken to our doctors who all seem to be just a tad bit "backwards" regarding my sons condition. No one wants to tell me the truth about him and his future, and they hate me asking questions. So I think it is time for me to change doctors. Thanks for listening to me. Mimi... mom to: Bethany 15 - emotional issues Lauryn 12 - down syndrome Maurra 6 - mild cerebral palsy Garrett 20 mo - heart condition/dev.delays 8 mo - medically fragile and wife to Jon, all living in WV For more plagio info

[Guest guest]

WOW! I really admire you for having so many kids. I think that when God gives someone children with special needs it is huge blessing, not every one can care for them. What an honor to have, although I am sure it must not feel that way a lot of the time.

Keep asking questions as far as is concerned and pushing for answers. Keep opening doors. You go mom!

in SW MissouriCaleb 2 1/2 and Lucas 1 year (starbanded 1st time 8/26/2 and banded 2nd time on 12/12/2)

New/Intro

Hi, I just wanted to introduce myself and my family. I am Mimi mom to 5 special needs children (all biological). My youngest son, is 8 months old and was dx'd with plagio at birth. He still has it pretty bad. His pediatrician has officially dx'd him with "dysmorphic facial features" which really urkes me. is considered medically fragile with other conditions such as plagiocephaly, asthma, static encephalmyopathy, tracheomalacia, and torticollis. He developmentally is around 5 months delayed. I have spoken to our doctors who all seem to be just a tad bit "backwards" regarding my sons condition. No one wants to tell me the truth about him and his future, and they hate me asking questions. So I think it is time for me to change doctors. Thanks for listening to me. Mimi... mom to: Bethany 15 - emotional issues Lauryn 12 - down syndrome Maurra 6 - mild cerebral palsy Garrett 20 mo - heart condition/dev.delays 8 mo - medically fragile and wife to Jon, all living in WV For more plagio info

[Guest guest]

I am so pro parent research etc. You are your child's #1 advocate. No one else will fight for them as hard as you do because you love them the most. Not every one is as educated about plagio or its treatments. I found treatment for my daughter only through research and advice online and from groups like this. The power of communication in these support groups is fantastic. I also found a program that would deal with my daughter's developmental delays taht everyone else seemed to completely blow off and it turns out the the state will give her free PT and OT and education for her delays because she is several months behind. I love my pediatrician, but he is not a specialist. I feel confident in his decisions, but I realize he is extrememly conservative. I do my own research and make my own decisions.

By all means, if you are not completely confident in the communication with your doctors, see someone else. Even if it is just for a consultation or second opinion. Start with one specialist, and if it isnt something they deal with, they will recommend someone else. I dont know what some of the conditions are, the the brain and trach issues, but someone else might know better.

Jen

[Guest guest]

If I can butt in here . . I'm interested that you say you would only consider

lugols/iodoral with a cancer dx. I have a friend who has just had bowel cancer

surgery (and they found secondaries and I would like to be clear why these

are better than nascet iodine for a cancer dx. I know some use it.

Thanks!

Lynda

>

> My personal preference is Iodoral. Mainly because it is easy to take and I

don't have to deal with the taste of Lugols. Lugol's irritates the stomach of

many and Iodoral is formulated with a silica that allows it to be carried to the

small intestine before breaking down and being absorbed.

>

> There are only two forms that I would consider with a cancer dx and that is

the pill form of lugols (Iodoral) and Lugols (liquid). I would start on at

least 25 mgs of Iodoral - my preference is 50 mgs. Add 2,000 mgs Vit C, Celtic

Salt - check out my protocol info on www.naturalthyroidchoices.com

>

>

>

>

> New/Intro

>

>

> Hello all;

>

> I just joined up, so I thought I would say hello. I am interested in getting

some Iodine supplements, but I'm confused which form I should try.

>

> About me: I have Non-Hodgkins Lymphoma (my last scan showed only very minor

levels left now) and I take Bio-HRT. The GYN who prescribes my bio's told me my

Iodine levels were low a year and a half ago. I've been trying to get them up

again using kelp, but a skin test still shows me low. I'd also like to lose some

weight-since chemo in 2006 my weight has shot up. So now I'd like to try Iodine.

>

> How do I decide if I should take Lugols or Iodoral, or something else? I'm

reading the Files, Links, Database info, etc. but it's all very confusing to me.

Any advice would be greatly appreciated.

>

> Thanks in advance,

> Cyndi in northern California

>

[Guest guest]

Because the body needs both iodine and iodide and Lugol's formula is the only one that delivers this.

Steph

New/Intro> > > Hello all;> > I just joined up, so I thought I would say hello. I am interested in getting some Iodine supplements, but I'm confused which form I should try. > > About me: I have Non-Hodgkins Lymphoma (my last scan showed only very minor levels left now) and I take Bio-HRT. The GYN who prescribes my bio's told me my Iodine levels were low a year and a half ago. I've been trying to get them up again using kelp, but a skin test still shows me low. I'd also like to lose some weight-since chemo in 2006 my weight has shot up. So now I'd like to try Iodine.> > How do I decide if I should take Lugols or Iodoral, or something else? I'm reading the Files, Links, Database info, etc. but it's all very confusing to me. Any advice would be greatly appreciated.> > Thanks in advance,> Cyndi in northern California>