My 2 biggest gripes with CHARGE trtmnts

[Guest guest]

I assume there is a reason why things are done this way, and I will sleep

better if someone could explain it to me. These two things have bothered me for

years.

The 1st is choanal atresia repair at newborn to one year. It appears to me

that the operation fails 99% of the time, and must be repeated, sometimes

several times. Why, with almost no chance of lasting repair, must it be

attempted

so early. I don't get the point. Part 2, is that palatal repair seems to

be more valuable. So, why is that not the normal procedure.

2ndly, I thought that weight-bearing is essential for muscle development and

strength. Yet 's lifts do not bring her to equal weight distribution,

and therefore, her right side is doing all " standing " weight bearing. And her

left side is the weaker, particularly at the core, and in reference to

balance. How is this not a contributing factor to the problem?

Thanks for any light you can shed.

in Ma. (, 21 yrs)

[Guest guest]

Hi ,

Call me crazy, but I'd really like to get some solid stats on the

repair-age,procedure,follow-up treatment, short and long-term results, and if

its as

" bad " as I think it is, then somehow do something about it. Any ideas how to

go about this? Let me re-word. I don't want to gather stats-I want to find

an appropriate professional who will gather stats. And we only need to deal

with the CHARGE population, and let 'them' project it into the general

population, if that's appropriate. We need a cage to rattle. The conference

is so

far in the future. Who, how can we rattle?

P.S. With Kennedy, again, look at her age. How old was she for the final

repair?

in Ma. (, 21 yrs)

[Guest guest]

Ok. We have perhaps uncovered a conflict that's going to gooey up

progress. So, let me refine my question, and separate the trans-palatal repair

as

its own entity, and not look at either repair in lieu of the other. Oops,

forgot to check the manual for existing stats. Will do that now. (shame on

me...) :-)

[Guest guest]

I'm going to give a shout out to the first one, Part 2 - K had the

transpalatal repair at age 8 weeks, with stents in for another 6 weeks post

op. She still had to have numerous repeat surgeries to open it again. I

think with the whole c. atresia repair game, it's a draw; some will get

lucky and one time's the charm, others (like K) will need repeated

procedures to keep things patent. I don't think there's a rhyme or reason

to it, in my opinion!

Mom to Kennedy 8 (CHARGE), 17, 15, and wife to Graeme

New Brunswick, Canada

http://www.chargesyndrome.info

>

> I assume there is a reason why things are done this way, and I will

> sleep

> better if someone could explain it to me. These two things have bothered

> me for

> years.

> The 1st is choanal atresia repair at newborn to one year. It appears to me

>

> that the operation fails 99% of the time, and must be repeated, sometimes

> several times. Why, with almost no chance of lasting repair, must it be

> attempted

> so early. I don't get the point. Part 2, is that palatal repair seems to

> be more valuable. So, why is that not the normal procedure.

>

> 2ndly, I thought that weight-bearing is essential for muscle development

> and

> strength. Yet 's lifts do not bring her to equal weight distribution,

>

> and therefore, her right side is doing all " standing " weight bearing. And

> her

> left side is the weaker, particularly at the core, and in reference to

> balance. How is this not a contributing factor to the problem?

>

> Thanks for any light you can shed.

> in Ma. (, 21 yrs)

>

>

>

[Guest guest]

Choanal Atresia Repair on a newborn who is either incredably sick and frail, or

a premee, has a better fighting chance going through the procedure slowly and

effectively then having a Palatal Repair, which is too much for a baby of that

size and depending on how sick that baby is, to handle all at once. Yea there is

a 99% chance that this repair either won't work, or will have to be repeated

numerous of times, but the reason why it's repeated is that the baby is growing,

and as it grows everything shifts, where with a Palatal everything breaks.

Weight bearing and muscle development are two different things. Muscle

strength is what a body part - arm, leg, back, etc - can withstand your own body

weight while walking, and doing your every day thing. Weight bearing is the

person trying to strengthen that body part, not the body doing it naturally.

Sincerely yours; Krista Bach. 27 year old CHARGEr.

mdlinda@... wrote:

I assume there is a reason why things are done this way, and I will

sleep

better if someone could explain it to me. These two things have bothered me for

years.

The 1st is choanal atresia repair at newborn to one year. It appears to me

that the operation fails 99% of the time, and must be repeated, sometimes

several times. Why, with almost no chance of lasting repair, must it be

attempted

so early. I don't get the point. Part 2, is that palatal repair seems to

be more valuable. So, why is that not the normal procedure.

2ndly, I thought that weight-bearing is essential for muscle development and

strength. Yet 's lifts do not bring her to equal weight distribution,

and therefore, her right side is doing all " standing " weight bearing. And her

left side is the weaker, particularly at the core, and in reference to

balance. How is this not a contributing factor to the problem?

Thanks for any light you can shed.

in Ma. (, 21 yrs)

[Guest guest]

I would like to give my opinion, for what it is worth, as Amelie does not

have choanal atresia, BUT, I thought that all new borns can not breath

through their mouths (innateness theory), only through the nose, the mouth

is purely designed for breastfeeding to establish, latching on and suckling

etc, therefore if a child is born with atresia and it is severe enough it

must warrant immediate and early surgery to sustain life, regardless of the

failure rate. Thats what I thought not sure of this though!!

hugs Les x

>

> Choanal Atresia Repair on a newborn who is either incredably sick and

> frail, or a premee, has a better fighting chance going through the procedure

> slowly and effectively then having a Palatal Repair, which is too much for a

> baby of that size and depending on how sick that baby is, to handle all at

> once. Yea there is a 99% chance that this repair either won't work, or will

> have to be repeated numerous of times, but the reason why it's repeated is

> that the baby is growing, and as it grows everything shifts, where with a

> Palatal everything breaks.

>

> Weight bearing and muscle development are two different things. Muscle

> strength is what a body part - arm, leg, back, etc - can withstand your own

> body weight while walking, and doing your every day thing. Weight bearing is

> the person trying to strengthen that body part, not the body doing it

> naturally.

>

> Sincerely yours; Krista Bach. 27 year old CHARGEr.

>

>

> mdlinda@... <mdlinda%40aol.com> wrote:

> I assume there is a reason why things are done this way, and I will sleep

> better if someone could explain it to me. These two things have bothered

> me for

> years.

> The 1st is choanal atresia repair at newborn to one year. It appears to me

>

> that the operation fails 99% of the time, and must be repeated, sometimes

> several times. Why, with almost no chance of lasting repair, must it be

> attempted

> so early. I don't get the point. Part 2, is that palatal repair seems to

> be more valuable. So, why is that not the normal procedure.

>

> 2ndly, I thought that weight-bearing is essential for muscle development

> and

> strength. Yet 's lifts do not bring her to equal weight distribution,

>

> and therefore, her right side is doing all " standing " weight bearing. And

> her

> left side is the weaker, particularly at the core, and in reference to

> balance. How is this not a contributing factor to the problem?

>

> Thanks for any light you can shed.

> in Ma. (, 21 yrs)

>

>

[Guest guest]

It was a couple of years ago, about age 5 or 6 I think for the last one.

It would be interesting to see the data collected on the CHARGE pop. for

sure.

Lis

>

> Hi ,

> Call me crazy, but I'd really like to get some solid stats on the

> repair-age,procedure,follow-up treatment, short and long-term results, and

> if its as

> " bad " as I think it is, then somehow do something about it. Any ideas how

> to

> go about this? Let me re-word. I don't want to gather stats-I want to find

>

> an appropriate professional who will gather stats. And we only need to

> deal

> with the CHARGE population, and let 'them' project it into the general

> population, if that's appropriate. We need a cage to rattle. The

> conference is so

> far in the future. Who, how can we rattle?

> P.S. With Kennedy, again, look at her age. How old was she for the final

> repair?

>

> in Ma. (, 21 yrs)

>

>

[Guest guest]

had the c.atresia palatal repair at 4 days old. But she weighed in

at 4 pounds 10 ounces(she was 8 weeks early and the nurses said she'd have

been a 10 pound term baby!), and she did not have bone to repair, just

fibrous tissue. She was lucky and has only needed the single surgery to

date. I think a lot depends on which " type " of atresia it is. If it is

bony, I believe the chances of scarring over or closing again with growth is

a very real possibility.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

Re: My 2 biggest gripes with CHARGE trtmnts

I'm going to give a shout out to the first one, Part 2 - K had the

transpalatal repair at age 8 weeks, with stents in for another 6 weeks post

op. She still had to have numerous repeat surgeries to open it again. I

think with the whole c. atresia repair game, it's a draw; some will get

lucky and one time's the charm, others (like K) will need repeated

procedures to keep things patent. I don't think there's a rhyme or reason

to it, in my opinion!

Mom to Kennedy 8 (CHARGE), 17, 15, and wife to Graeme

New Brunswick, Canada

http://www.chargesyndrome.info

[Guest guest]

had his done (choanal atresia repair) at 4 weeks of age, 7 weeks of

age and then 10 weeks of age by an ENT who had no idea what he was doing.

He kept taking the stents out. Then he had it done by another ENT who had

much more experience who did it at 12 weeks of age, transpalatal, and kept

the stents in for 8 MONTHS. He is now 9 years old and hasn't had a problem

since. The only problem now from having the c.atresia in the first place is

that he has a deviated septum which needs to be fixed in a few years.

Debbie Matasker

Re: My 2 biggest gripes with CHARGE trtmnts

Hi ,

Call me crazy, but I'd really like to get some solid stats on the

repair-age,procedure,follow-up treatment, short and long-term results, and

if its as

" bad " as I think it is, then somehow do something about it. Any ideas how to

go about this? Let me re-word. I don't want to gather stats-I want to find

an appropriate professional who will gather stats. And we only need to deal

with the CHARGE population, and let 'them' project it into the general

population, if that's appropriate. We need a cage to rattle. The conference

is so

far in the future. Who, how can we rattle?

P.S. With Kennedy, again, look at her age. How old was she for the final

repair?

in Ma. (, 21 yrs)

[Guest guest]

Vinny had bilateral, bony choanal atresia. He had the

transpalatal repair done on July 1st- he was born on

June 4th... so we'll say he was about 4 weeks old.

From what I understand, the NICU at Children's

Hospital of Michigan (in Detroit, part of the DMC)

would have preferred to do earlier if (1) the original

NICU he was at actually diagnosed it, and (2) he did

not develop endocarditis within his 1st 2 weeks of

life.

I think it was Les who posted that newborns innately

breathe through their noses- I am sure you have heard

the " obligatory nose breather " term from your various

ENTs. That is exactly what we were told which makes

bilateral choanal atresia a " medical emergency. "

Since Vinny couldn't get the surgery right away, he

was put on a ventilator. (He was also in heart

failure- I am sure that had something to do with being

placed on a vent!)

Once he had the first repair on July 1st, he had

stents until mid-August. His openings closed up

almost immediately (just tissue this time) so he had

laser surgery to open his airway again. He had to

have the laser surgery in August, September, November,

and December - each time requiring anesthesia but

almost all were paired with other surgeries. He has

been good- or shall I say " good enough " ever since.

Though the bone started to grow back, HE finally

started to grow. The bottom line? ALL of this was

done in an effort to prevent a trach. It worked. We

were (are) lucky to have an amazingly gifted ENT who

has been practicing for over 30 years... I am sure

that was a factor in Vinny not ending up with a trach.

Okay, that is our story!

ina, mom to Luca (3) & Vinny (14 months w/ cHARgE)

--- mdlinda@... wrote:

> I assume there is a reason why things are done this

> way, and I will sleep

> better if someone could explain it to me. These two

> things have bothered me for

> years.

> The 1st is choanal atresia repair at newborn to one

> year. It appears to me

> that the operation fails 99% of the time, and must

> be repeated, sometimes

> several times. Why, with almost no chance of lasting

> repair, must it be attempted

> so early. I don't get the point. Part 2, is that

> palatal repair seems to

> be more valuable. So, why is that not the normal

> procedure.

>

> 2ndly, I thought that weight-bearing is essential

> for muscle development and

> strength. Yet 's lifts do not bring her to

> equal weight distribution,

> and therefore, her right side is doing all

> " standing " weight bearing. And her

> left side is the weaker, particularly at the core,

> and in reference to

> balance. How is this not a contributing factor to

> the problem?

>

> Thanks for any light you can shed.

> in Ma. (, 21 yrs)

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Tyler had his first attempt at a repair at a couple weeks old, but they found

out that it was

solid bone. He was also 7 weeks early, and then he had his 2nd repair at 4

months. He

had stents in for 6 weeks and then at 1 year had another surgery, had stents

placed for

another 8 weeks. Overall he has had about 8-10 surgeries on his c. atresia,

last one when

he was 3. The last few were just a little drilling and dilitation mostly of the

tissue. He has

not needed one since. He is now 8. However he was trached for 22 months, not

needing

vent support. We did not choose to do the transpalate operation, all were done

non-

invasive. Hope this helps. I also agree, it just depends on the kid. Our

first ENT didn't

really know what she was doing, but the 2 one (who placed the 2nd stents did).

I think it

is one of those things that just makes our kids special.

[Guest guest]

i have the palate thing dont have the c thing and i think wat everyone is

syaing is right les i think id agree with you that artresia is fixed first

so that people as paulina says dotn need a trach with me and my palate it

wasnt so ergent as soem of my medical isues coz they knew i couldnt swallow

anyway as for weight bearing i think i agree with kirsta there i try all the

time to do it and im stornger for it lol

>

> Tyler had his first attempt at a repair at a couple weeks old, but they

> found out that it was

> solid bone. He was also 7 weeks early, and then he had his 2nd repair at 4

> months. He

> had stents in for 6 weeks and then at 1 year had another surgery, had

> stents placed for

> another 8 weeks. Overall he has had about 8-10 surgeries on his c.

> atresia, last one when

> he was 3. The last few were just a little drilling and dilitation mostly

> of the tissue. He has

> not needed one since. He is now 8. However he was trached for 22 months,

> not needing

> vent support. We did not choose to do the transpalate operation, all were

> done non-

> invasive. Hope this helps. I also agree, it just depends on the kid. Our

> first ENT didn't

> really know what she was doing, but the 2 one (who placed the 2nd stents

> did). I think it

> is one of those things that just makes our kids special.

>

>

>

[Guest guest]

I had a operation as soon as i was born coz i couldnt breathe, i ended up

having more and the doctor stuffed something up and i had this big hole at

the top of my mouth for years and years

> solid bone. He was also 7 weeks early, and then he had his 2nd repair at 4

> > months. He

> > had stents in for 6 weeks and then at 1 year had another surgery, had

> > stents placed for

> > another 8 weeks. Overall he has had about 8-10 surgeries on his c.

> > atresia, last one when

> > he was 3. The last few were just a little drilling and dilitation mostly

> > of the tissue. He has

> > not needed one since. He is now 8. However he was trached for 22 months,

> > not needing

> > vent support. We did not choose to do the transpalate operation, all

> were

> > done non-

> > invasive. Hope this helps. I also agree, it just depends on the kid. Our

> > first ENT didn't

> > really know what she was doing, but the 2 one (who placed the 2nd stents

> > did). I think it

> > is one of those things that just makes our kids special.

> >

> >

> >

>

>

[Guest guest]

I had the hole thing too. Apperently though i still need one more opperation

for my atresia. Too bad thats probably not covered by the provincial

government now that im over 18. sigh.

I should see an ENT though. I could always write to local charities and

stuff. I dont think its a cosmetic repair though. It would allow me to

breath better. Because of the growth of scar tissue and stuff i have kinda

Stinosis.

Im just waiting for this doctor that i was told about from the list to call

or write me back. Its summer holiday atm so its possible the doctor is

away. I will go back this week again to see.

Chantelle

>

> I had a operation as soon as i was born coz i couldnt breathe, i ended up

> having more and the doctor stuffed something up and i had this big hole at

> the top of my mouth for years and years

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> > solid bone. He was also 7 weeks early, and then he had his 2nd repair at

> 4

> > > months. He

> > > had stents in for 6 weeks and then at 1 year had another surgery, had

> > > stents placed for

> > > another 8 weeks. Overall he has had about 8-10 surgeries on his c.

> > > atresia, last one when

> > > he was 3. The last few were just a little drilling and dilitation

> mostly

> > > of the tissue. He has

> > > not needed one since. He is now 8. However he was trached for 22

> months,

> > > not needing

> > > vent support. We did not choose to do the transpalate operation, all

> > were

> > > done non-

> > > invasive. Hope this helps. I also agree, it just depends on the kid.

> Our

> > > first ENT didn't

> > > really know what she was doing, but the 2 one (who placed the 2nd

> stents

> > > did). I think it

> > > is one of those things that just makes our kids special.

> > >

> > >

> > >

> >

> >

[Guest guest]

I am sorry I can't you to much with your concerns because I have not

had to deal with your 1st worry. But Eva seems to have a stronger

side also. She will bare weight on one side more then the other and

I am thinking that is why she can't sit up yet.

I hope everyone else has been able to help you.

Crystal mom to (10), (3), and Eva (16 month old CHARGEr)

wife to Dan

>

> I assume there is a reason why things are done this way, and I

will sleep

> better if someone could explain it to me. These two things have

bothered me for

> years.

> The 1st is choanal atresia repair at newborn to one year. It

appears to me

> that the operation fails 99% of the time, and must be repeated,

sometimes

> several times. Why, with almost no chance of lasting repair, must

it be attempted

> so early. I don't get the point. Part 2, is that palatal repair

seems to

> be more valuable. So, why is that not the normal procedure.

>

> 2ndly, I thought that weight-bearing is essential for muscle

development and

> strength. Yet 's lifts do not bring her to equal weight

distribution,

> and therefore, her right side is doing all " standing " weight

bearing. And her

> left side is the weaker, particularly at the core, and in

reference to

> balance. How is this not a contributing factor to the problem?

>

> Thanks for any light you can shed.

> in Ma. (, 21 yrs)

>

>

>

>

[Guest guest]

Carmen's ENT would not repair her choanal atresia until she got

bigger (she was 4 pounds at birth). He said that she was too small

and narrow in her nasal cavity to even get the instruments in. So,

her first repair was not at a year. I don't regret it because I

know she would have only had to have had it done again if we had

done it earlier due to growth, etc.

B.

>

> had his done (choanal atresia repair) at 4 weeks of age, 7

weeks of

> age and then 10 weeks of age by an ENT who had no idea what he was

doing.

> He kept taking the stents out. Then he had it done by another ENT

who had

> much more experience who did it at 12 weeks of age, transpalatal,

and kept

> the stents in for 8 MONTHS. He is now 9 years old and hasn't had

a problem

> since. The only problem now from having the c.atresia in the

first place is

> that he has a deviated septum which needs to be fixed in a few

years.

>

>

>

> Debbie Matasker

>

>

>

> Re: My 2 biggest gripes with CHARGE trtmnts

>

>

>

> Hi ,

> Call me crazy, but I'd really like to get some solid stats on the

> repair-age,procedure,follow-up treatment, short and long-term

results, and

> if its as

> " bad " as I think it is, then somehow do something about it. Any

ideas how to

>

> go about this? Let me re-word. I don't want to gather stats-I want

to find

> an appropriate professional who will gather stats. And we only

need to deal

> with the CHARGE population, and let 'them' project it into the

general

> population, if that's appropriate. We need a cage to rattle. The

conference

> is so

> far in the future. Who, how can we rattle?

> P.S. With Kennedy, again, look at her age. How old was she for the

final

> repair?

> in Ma. (, 21 yrs)

>

>

[Guest guest]

had her first choanal atresia repair when she was 12 days old - 8 days

after her first open heart surgery. The choanal atresia surgery was too much

for her (apparently it can be very bloody when going through the bone and

tissue) and she crashed and was on life support (ECMO) for 12 days and suffered

3 strokes and then had fluid on her heart and we almost lost her several times

(she was on blood thinners with ECMO and had open wounds in her nose that would

not stop bleeding!) I don't mean to scare anyone, but in retrospect I would

have waited until she was much healthier to do the choanal atresia repair. She

had a trach for 8 months, and in a later surgery one side of her nose stayed

successfully open and when she could mouth breath we removed the trach. Her

last choanal atresia surgery was a couple of years ago and thankfully both sides

are now open.

Lori Myers

Spouse - Trent, Children - (9), (6 in a few days!, CHARGE Syndrome,

Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days,

Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss,

walking as of 12/22/04!, and Emma (3)

Dallas, Texas

Re: My 2 biggest gripes with CHARGE trtmnts

>

>

>

> Hi ,

> Call me crazy, but I'd really like to get some solid stats on the

> repair-age,procedure,follow-up treatment, short and long-term

results, and

> if its as

> " bad " as I think it is, then somehow do something about it. Any

ideas how to

>

> go about this? Let me re-word. I don't want to gather stats-I want

to find

> an appropriate professional who will gather stats. And we only

need to deal

> with the CHARGE population, and let 'them' project it into the

general

> population, if that's appropriate. We need a cage to rattle. The

conference

> is so

> far in the future. Who, how can we rattle?

> P.S. With Kennedy, again, look at her age. How old was she for the

final

> repair?

> in Ma. (, 21 yrs)

>

>

[Guest guest]

Kate,

Thanks for the in-depth answer. That makes sense. But if you can still

stand me, I have another question. What if she had been kept even the whole

time, so that weight distribution had been equal throughout the years? (before

the fixed position). Any guesses as to impact/outcome of that?

And yet another one? (don't know much, do I). No one says conclusively

that chiari causes scoliosis. But is the reason they suggest it might because

the chiari would also generate a neuromuscular dysfunction (regardless of

CHARGE.)?

If, in fact, the " lesser than even " lifts even MIGHT have aggravated the

scoliosis, by contributing to the shift through posture, and/or through

playing

into the existing hypotonia, and if its 'standard practice', then maybe we

can help head off a problem for any younger CHARGERS who present with

scoliosis.

(fyi-the pt rough measurement suggested only a 1/4 " true length discrepency

btwn legs)

Sooo! glad your on the list!

Thank you most sincerely,

in Ma.

[Guest guest]

tim had his reapaired at 8 days and again at 8 weeks--stents in both times that

had to be suctioned every 2 hours. then he had it again at 6 years--but didn't

have to be suctioned that time--just saline salution--hopefully, that will be

the last time!

Re: My 2 biggest gripes with CHARGE trtmnts

>

>

>

> Hi ,

> Call me crazy, but I'd really like to get some solid stats on the

> repair-age,procedure,follow-up treatment, short and long-term

results, and

> if its as

> " bad " as I think it is, then somehow do something about it. Any

ideas how to

>

> go about this? Let me re-word. I don't want to gather stats-I want

to find

> an appropriate professional who will gather stats. And we only

need to deal

> with the CHARGE population, and let 'them' project it into the

general

> population, if that's appropriate. We need a cage to rattle. The

conference

> is so

> far in the future. Who, how can we rattle?

> P.S. With Kennedy, again, look at her age. How old was she for the

final

> repair?

> in Ma. (, 21 yrs)

>

>

[Guest guest]

-

Cannot answer about #1, but will take a stab at #2:

Except in rare occasions, leg length discrepancies are only

corrected about half of the discrepancy. Correcting the full amount

tends to be uncomfortable. After a body is in a prolonged posture

for a time, it becomes fixed that way. Correcting the full amount

puts strain on the hundreds of areas that are fixed. Joint

mobilizations can help to losen the joints, but it has to be done

slowly and gradually, which is why the full amount is not corrected

off the bat. After years of being shifted, has to learn to

move over her left side again, gradually building up the strength

and stability and learning a new way to move. For example, my

sacrun is rotated. A collegue was working on it the other day, then

I spent 3 days in pain because things were moving that hadn't moved

in years, plus I have compensated with my movement patterns and have

had to re-learn how to stand. And this is for a very minute

rotation at only one segment of the body. Give PT time to work on

all avenues. Additionally, some of the discrepancy might be due to

muscular tightness, which can be released and stretched and change

the amount of discrepancy, and lifting too much would blok that.

Gott run, but any ??

Kate (PT in NY)

>

> I assume there is a reason why things are done this way, and I

will sleep

> better if someone could explain it to me. These two things have

bothered me for

> years.

> The 1st is choanal atresia repair at newborn to one year. It

appears to me

> that the operation fails 99% of the time, and must be repeated,

sometimes

> several times. Why, with almost no chance of lasting repair, must

it be attempted

> so early. I don't get the point. Part 2, is that palatal repair

seems to

> be more valuable. So, why is that not the normal procedure.

>

> 2ndly, I thought that weight-bearing is essential for muscle

development and

> strength. Yet 's lifts do not bring her to equal weight

distribution,

> and therefore, her right side is doing all " standing " weight

bearing. And her

> left side is the weaker, particularly at the core, and in

reference to

> balance. How is this not a contributing factor to the problem?

>

> Thanks for any light you can shed.

> in Ma. (, 21 yrs)

>

>

>

>

[Guest guest]

,

Patty had four surgeries before the surgery worked. It also was the surgery

through the palate that worked. We had to do all of them for her health. It

stinks but apparently remains true for some children.

About the weight bearing, it needs to be done but there are some things that

just can't be changed. Patty has asymmetric hips, ankles and so on. She now

has inserts made to equalize her. It helps her.

It is a factor but one we can't change. You just have to keep what you have

and/or try to improve on it.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

Hi Simon,

Thanks for commenting. Does Jess have good air passage with both nostrils

now?

I need to compare " stent time " vs results in the responses I've filed. She

is fortunate, I believe, that she made it with only one major repair. I''ve

saved the histories which were posted. also needed immediate oral

airway, and also contd. intubation after atresia repair, which then led us to

the trach.

There ought to be a way for the docs to determine outright which surgical

protocal works best for which physical presentations, so we can avoid these

repeated surgeries for 'new to the world' Chargrs. That means someone finding

an

interested ENT. (I assume there is a 'publish or perish' edict in the

medical community as well.)

**

I also looked at patella mistracking---OUCH!!!! Are you a marathoner?

Geez-you do everything right, and it still gets ya. Where's the justice, I

ask...lol

Tell Flo I miss her, and that you're doing a good job representing the

family!

in Ma. (, 21 years)

[Guest guest]

Hi

I'm still way behind with my posts but thought I would chip at this late

stage.

had choanal atresia only, and Lesley said babies are nose breathers

only so Jess had be intubated. Following a PDA repair at 5 weeks (life

saving operation) she had stents inserted at 7 weeks. These stayed in for 14

weeks (due out earlier but illness and a hospital appt cancellation delayed

thier removal). She had to go back in after a few days and had a tidy up

done by laser. Since then ENT have done a couple of tidy ups while Jess was

having other procedures. These tidy ups were not scheduled. We had not

noticed any difference in Jess's breathing prior hence I am calling them

tidy ups rather than additional procedures. She also had mitamycin to reudce

the scar tissue.

Again from a personal perspective I am teaching myself to walk and stand

differently to alleviate patella mistracking. I am also having to release my

TFE's (the muscle's over the front of the hip). They were not just

overdeveloped but have been solid for decades. When they are loose I really

notice the difference particilarly in my pelvis which I regularly pull out

of alignment. My body has been used to the way I have stood and walked for

years and also used to the locked muscles. It is possible to re educate your

body but it is slow and painful. It also involves much conscious effort

which is perhaps the hardest part.

Best wishes

Simon