Is it worth it?

May 29, 2003

Dear Ellen,

I'm so much better than in 1994!!!! At that time I could only sit up

about 20 min. after resting for 1 1/2 hrs. I couldn't lift a glass to my

face and my husband had to bath me and wash my hair. Then again on our 36th

Wedding anniversary in 1997 I hemorrhaged and ended up in the hospital for

11 days 8 of that was on IV's etc. This was from side effects of Volteran

that I took to control my pain. I was also on prednisone and Methotrexate..

My hbg. dropped to 8 1/2. It was then that I decided to take the AP. I

have never before taken the IV's as my MD here in Indonesia was too afraid

to try something he didn't learn in med school. Now that I have done so

good for so many years with only short times out of remission, I have hit a

slump after being sick with an upper respiratory infection for six weeks and

the last 2-3 weeks had a urinary tract infection which I finally got

diagnosed and began treatment this week. My nearest lab and drug store is 1

1/2 hrs. from home. My MD is 4 1/2 hrs. from home. Living in Indonesia is

not too convenient at times like these.

Yes, I truly believe the AP is worth it. It is not always a cure but

does give one more years to their lives with a better quality of life. My

husband feels that without the AP if I was still on the pred. Voltern &

Methotrexate that I would have died years ago.

Ethel remembers me and much of the stress that I've had off and on

living here for the last 11 yrs. We have gone through the overthrow of the

government and had to evacuate to Singapore, since then has been the

bombing/burning of over 200 churches, the Bali Bombing that targeted

foreigners. The anti Americanism that resulted from the Iraq War. This is

not to mention various family problems back in the states. So, considering

all this I still feel that the AP is worth it and has saved my life. So

hang in there and give it a chance. This is a great group of ones who will

encourage each other.

,

So, overall, how much better do you think you are compared

with where you were in 1994? Is it worth it to you? (The

minocycline and the clindy IV's.)

Ellen

May 30, 2003

Hi ,

I'm Paige and a newbie to the group. Just wanted to let you know that your

story is truly inspiring, and even though you're having a setback now, I am

so encouraged by your AP success! I'll let the more experienced pan out the

advice here, but I am very glad to know you and your story and I wish you

all the best.

Paige

December 22, 2006

NO it is not worth it...you did what you did and your daughter is

blessed to have what she has..

>

> My daughter is now 14.5 months old. She wore a helmet from when she

> was 6 months until she turned 1 year old. Once she turned 1, we were

> told to stop wearing the helmet because it would not help anymore and

> she still had a 5mm asymmetry. We just went back today for her follow

> up and she is still at a 5mm asymmetry. Our orthodic said there was

> nothing else for us to do but wait and see and to come back in 6

> months. But her asymmetry is really bothering me so I made an

> appointment with Cranial Tech for a DOCband but the closest location

> is 5 hours away. Is it worth it? Should I take her there? Are

> DOCbands really better than any other cranial molding helmet?

>

> Thanks,

> Elaine

>

December 22, 2006

Do you have any pictures? , NYjlengelbart <jlengelbart@...> wrote: NO it is not worth it...you did what you did and your daughter is blessed to have what she has..>> My daughter is now 14.5 months old. She wore a helmet from when she> was 6 months until she turned 1 year old. Once she turned 1, we

were> told to stop wearing the helmet because it would not help anymore and> she still had a 5mm asymmetry. We just went back today for her follow> up and she is still at a 5mm asymmetry. Our orthodic said there was> nothing else for us to do but wait and see and to come back in 6> months. But her asymmetry is really bothering me so I made an> appointment with Cranial Tech for a DOCband but the closest location> is 5 hours away. Is it worth it? Should I take her there? Are> DOCbands really better than any other cranial molding helmet?> > Thanks,> Elaine> __________________________________________________

December 22, 2006

If her asymmetry is really bothering you, it's definitely worth it! I

wasn't happy with the progress my son had in his first band, so we

switched to a DOCband when he was 12 months old. He's had amazing

correction for his age. When we started 4 months ago I was heartsick

looking at him since he was so lopsided and now he's so much better

that I'm actually second guessing my decision to get the 3rd band.

Since he has so much facial asymmetry we're continuing, but if it were

only his head shape that was the problem we'd stop now. It would be a

6-7 hour drive, so we fly, but it's been so worth it to me! Good luck

with whatever you decide.

Sheila, mom to , Starband 3/6-8/6, DOCband 9/6-?

>

> My daughter is now 14.5 months old. She wore a helmet from when she

> was 6 months until she turned 1 year old. Once she turned 1, we were

> told to stop wearing the helmet because it would not help anymore and

> she still had a 5mm asymmetry. We just went back today for her

follow

> up and she is still at a 5mm asymmetry. Our orthodic said there was

> nothing else for us to do but wait and see and to come back in 6

> months. But her asymmetry is really bothering me so I made an

> appointment with Cranial Tech for a DOCband but the closest location

> is 5 hours away. Is it worth it? Should I take her there? Are

> DOCbands really better than any other cranial molding helmet?

>

> Thanks,

> Elaine

>

December 22, 2006

>hi elaine, my son is 14 months old and is 6 weeks into second

docband. i will tell you, i was skeptical that i would see any

improvement with 2nd band after he turned 1. wow, was i wrong. i feel

like just in the last 2 weeks his head is really changing. i also do

CST twice per week. but anyway, it is worth it. you can get results

over a year. good luck with your decision.