bad news for Grace from Dr. Frick appt.

[Guest guest]

Here is my update on Graces appointment yesterday. For those that

are newer; Grace is 3 yrs. 3 mos. She began treatment at birth with

below knee casts for about 4 mos. followed by treatment w/Dr

whom is on Dr Ponsetis list of " certified " Drs. We were

unhappy with him and moved on to Iowa to see Dr.Ponseti when Grace

was 6/7 mos. She received 2 additional casts then a second tenotomy

was performed on her right achilles(first had been done too early;

before her feet were corrected) and a first was performed on the

left. Went home started braces 24/7 as advised. Had problems after

less than a month in them. Sent pics. to Iowa and were advised by

Dr. P. to go to night time only and to turn down the degrees of

rotation to about 55 due to very loose ligaments. So we did. We

continued to have issues with Graces feet and all along feelings

that something was just not right. To be honest her right foot

looked terrible......loose joints, late walking, foot dragging,

falling, then last year Rocker bottom. So now here I am a year later

back from seeing Dr Frick yesterday with news that Grace has had

rocker bottom for quit some time. Looking back at very early

pictures it appears that it was there all along for the last 2.5

years. Her heels have never came down. Xrays taken yesterday show

her right heel is way up from where it should be. Her left is up as

well, but not so much. Xrays taken last Jan. show rockerbottom too.

So pretty much she has been using only the front of her foot when

walking and mostly the middle which is why rockerbottom causes

a " breakdown " of the mid foot. So to make a long story and

appointment short she needs a posterior release for sure on the

right and possibley on the left as well. I was told also that Dr

Ponseti usually is not concerned w/rockerbottom and has advised Dr

Frick to " wait and see what happens as the child walks on it for a

while " . I was told that is probably what Dr P would advise me at

this time. But Dr Frick feels Graces foot would be unuseable later

in life if left like this. I feel this way too because I have had to

sit and watch it get worse over the past year and am quite honestly

upset I followed several Drs advice to do so. If at the age of 3 a

child is having major problems why would anyone think that this is

okay to leave alone?? I know so many of you here have listened to

me over the last two years post of my concerns and issues with

Grace. I have posted alot of pictures and got alot of " WOW "

something is definetly not right........and it just seems to me that

something should have been done by now. I am honestly a bit angry.

I did go to Drs that were recommended. I did what I was told. I

really feel like because Graces case was not the " norm " for the

Ponseti method people were afraid to do anything. It really hurts

that I see so many other babies with new problems and people are so

eager to find a solution or to invent new ways to help them. Maybe

I am over reacting but why was nothing done for MY child?

Dr Frick also feels Grace does not have cerebral palsy which for a

while was thought to be the cause of Graces foot dragging. So after

a very long phone consult. with a gait specialist Grace is to see in

Jan to determine why her foot is dragging I was told that because

Grace was forced to walk improperly she probably has alot of

symptoms that are resembling Cerebral palsy. Alot of CP children

toe walk because of achilles tightness. (tight achilles also causes

the heel to not drop which also causes rocker bottom) Toe walking is

undesirable because it causes hip problems, shortens the achilles

even more, causes shortened bones on the affected side, stiff joints

from constant muscle contraction (walk around on your toes all day

and see how your muscles feel.) Well not surprisingly Grace has all

of these problems and they are all getting worse. So I guess for

her case surgery cannot be avoided. Yes, we DID use the DBB

religously!! Yes we did exactly as told and we even saw the best.

So, I guess thats my update. Not really what I wanted to hear; but

definetly better than being told she is fine and to sit and wait and

see if things get better. It is what I kind of felt needed to be

said, but still hard to hear! There was no mention of trying a

couple casts to see if things could be corrected that way. So, Dr

Frick said for me to call him when I decide I want it done. I think

I will wait until after Christmas and on the brighter side at least

it is winter and the casts after surgery will help keep her legs

warm. And hopefully the surgery will not just help her feet

function better but everything.

and Grace