A Couple of Questions

[Guest guest]

We took our grandson to a DP 2 times before they got the diagnosis, which the

SP got on the first visit. We just thought he was late talker. He has

apraxia. We started him on the Omega 3 and 6 and he is saying more words and

putting two words together now. He is also now playing better with other

children.

Every little bit of improvement makes us so excited. I never thought I

would get excited over Cameron saying BOO BOO Knee. He now also calls his Mom

when he needs or wants something and can tell us when he needs to use the potty.

I am over joyed at the progress.

[Guest guest]

My question is to the

> listmates who are doing a diet. I read somewhere that casein A1,

> which was in the cow milk was the main culprit and for that reason

> goat yogurt was O.K. What about goat cheese ? We want to give him

> some cheese.He is not any diet. We are just trying to steer clear

of

> as many things as possible.

There is information about this at www.enzymestuff.com. I have my son

on the Specific Carbohydrate Diet and we've been using goat cheese

for about 8 months with no problems.

[Guest guest]

My son could not handle casein, even with enzymes.

His gut is now healed form the enzymes, and we still do not allow casein in any

form.

-GA

A couple of questions

Hi,

has been on enzymes for about 3 weeks. AFP/ZP with each meal and

the last three days 1 cap No Fenol per day. So far, he seems calmer,

oppositional behaviour has been an issue for us, and still is, eats

better, and is more verbal. Changes are so subtle that it would take

more time to assess. The verbal part is funny to a point because he

has started shouting the words and the sentences he uses.Also, he

seems more sociable and he started colouring. He is 3,10.

He doesn't drink milk. Gets a lot of yogurt. My question is to the

listmates who are doing a diet. I read somewhere that casein A1,

which was in the cow milk was the main culprit and for that reason

goat yogurt was O.K. What about goat cheese ? We want to give him

some cheese.He is not any diet. We are just trying to steer clear of

as many things as possible.

My second question is: He's got flat foot and hyperflexive joints. Is

this indicative of any mineral deficency? I think it is, but may be

someone knows more about it and can share the information with me.

We have been doing also Epsom salts baths. Around five times a

week.We are really quite pleased with what we see and shall keep you

updated.

We plan to start giving him some zinc,10 mg a day. Is this too low?

TIA,

Kristian

[Guest guest]

>>I read somewhere that casein A1,

> which was in the cow milk was the main culprit and for that reason

> goat yogurt was O.K.

Goat yoghurt is tolerated by more people than cow yoghurt, but some

people still can't have it.

> We plan to start giving him some zinc,10 mg a day. Is this too low?

It would not have been sufficient for my son, but you can certainly

start with that amount and see how it might affect your son.

Dana

[Guest guest]

Hi there,

As my op approaches I am beginnning to think of lots

of questions, the first is about the 90 degree rule.

Is that a perminant thing or does it, like so many

other things depend?

And how long will it be before I can get back into the

swimming pool? or the stationary bike (that you all

seem to use) when can I one of them?

It also made me smile the other day when you were

chatting about your scar lengths. I had an op when I

was 3 and my scar from that is 15 inches long. But I

am curious about where your scars are, are they at the

front, side or more on you bum?

I do have an appointment with my surgeon in a few

weeks, but that seems like ages away at the moment,

just wanted to know.

Thanks for your help as always

Liney

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[Guest guest]

Hi there,

As my op approaches I am beginnning to think of lots

of questions, the first is about the 90 degree rule.

Is that a perminant thing or does it, like so many

other things depend?

And how long will it be before I can get back into the

swimming pool? or the stationary bike (that you all

seem to use) when can I one of them?

It also made me smile the other day when you were

chatting about your scar lengths. I had an op when I

was 3 and my scar from that is 15 inches long. But I

am curious about where your scars are, are they at the

front, side or more on you bum?

I do have an appointment with my surgeon in a few

weeks, but that seems like ages away at the moment,

just wanted to know.

Thanks for your help as always

Liney

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[Guest guest]

Liney: Write all of these questions down on a piece of paper, and take

it with you. Don't leave the doctor's office until you get answers.

Your doc is the one to give you permission to progress to these other

activities, and he will tell you how long you need to keep the hip

precautions. Some doctors release you in a few months, some say they

are forever! Your precautions and your scar will depend on the

approach that he takes. (Anterior or posterior approach) Ask him which

he uses.

Marilyn

bee Buxton wrote:

>Hi there,

>

>As my op approaches I am beginnning to think of lots

>of questions, the first is about the 90 degree rule.

>Is that a perminant thing or does it, like so many

>other things depend?

>

>And how long will it be before I can get back into the

>swimming pool? or the stationary bike (that you all

>seem to use) when can I one of them?

>

>It also made me smile the other day when you were

>chatting about your scar lengths. I had an op when I

>was 3 and my scar from that is 15 inches long. But I

>am curious about where your scars are, are they at the

>front, side or more on you bum?

>

>I do have an appointment with my surgeon in a few

>weeks, but that seems like ages away at the moment,

>just wanted to know.

>

>Thanks for your help as always

>Liney

>

>

>

>

>

>

>

>___________________________________________________________ALL-NEW

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>

>

>

>

[Guest guest]

Hi Liney,

I hope you got the rather long reply I sent to your previous post,

when you got news of your date for surgery (if I have similar long

ones I'll try to mail directly). I like your questions, I have

similar ones pre-surgery. My scar is going to be at the side-it was

the first question I asked! I had hoped he could go in via the long

scar at the front that I have, but nope, not for me. Just curious,

did you have an osteotomy at 3? Sounds like a similar scar, (I had

one at 14). What kind of hip are you having?

best wishes,

Leigh

[Guest guest]

Hi Leigh,

Thanks for replying, Im sorry that I didnt reply

before I have your email in my inbox still but keep

forgetting to reply.

I was filling a form in this morning for the hospital

and it was asking what ops I have had before and I

dont actually know the name of it, I will have to

phone my mum and ask her. I have been told so many

times that I should really know it but now, but I

think it was an open reduction and then I had a metal

plate put in, which was removed about 18 months later.

I actually have my plate a screw in the drawer by my

bed, there is not a single sign of rust and it makes

me smile everytime I see it. (By the way I have just

spoken to mymum and yes it was a second stage femoral

osteotomy, means nothing to me, I should really look

it up on the net)

Im not really worried about where the scar is, the one

I have at the moment is horrible, but I love it, just

curious where it will be. My instinct tells me that

it will also be at the side or back, I'll find out in

a couple of weeks

Now for your other question, I am having my hip made

for me, and it is ceramic on plastic on metal, if that

makes sense, uncemented like yours though. Have you

got a date yet and what else have you asked your

surgeon? Just curious about what I should ask!

Best wishes

Liney

--- leigh_3220004 <Lgh@...> wrote:

---------------------------------

Hi Liney,

I hope you got the rather long reply I sent to your

previous post,

when you got news of your date for surgery (if I have

similar long

ones I'll try to mail directly). I like your

questions, I have

similar ones pre-surgery. My scar is going to be at

the side-it was

the first question I asked! I had hoped he could go in

via the long

scar at the front that I have, but nope, not for me.

Just curious,

did you have an osteotomy at 3? Sounds like a similar

scar, (I had

one at 14). What kind of hip are you having?

best wishes,

Leigh

[Guest guest]

Liney,

My scar is almost 12 inches long. I cannot see it by looking down

because of its location. With a mirror I can see see tpward the

back of my hip and goes sort of into the buttocks.

Swimming, you for sure cannot do that until your scar seals up.

You do not want the bacteria floating around pools to get in there.

Stationary bike, I could not use it until 6 weeks because I was full

no weight bearing. Different doctors have multiple theories on this

subject.

As Marilyn said, make a list of questions. This procedure is so

common for the doctors, I think they forget we are new at it and

worried and have questions. Never be afraid to ask your doctor

questions. You are the customer.....

Valeri

> Hi there,

>

> As my op approaches I am beginnning to think of lots

> of questions, the first is about the 90 degree rule.

> Is that a perminant thing or does it, like so many

> other things depend?

>

> And how long will it be before I can get back into the

> swimming pool? or the stationary bike (that you all

> seem to use) when can I one of them?

>

> It also made me smile the other day when you were

> chatting about your scar lengths. I had an op when I

> was 3 and my scar from that is 15 inches long. But I

> am curious about where your scars are, are they at the

> front, side or more on you bum?

>

> I do have an appointment with my surgeon in a few

> weeks, but that seems like ages away at the moment,

> just wanted to know.

>

> Thanks for your help as always

> Liney

>

>

>

>

>

>

>

> ___________________________________________________________ALL-NEW

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[Guest guest]

DEAR LINEY, THIS IS MARGE. As my op approaches I am beginnning to think of lotsof questions, the first is about the 90 degree rule. Is that a perminant thing or does it, like so manyother things depend? MY HIP WAS LAST OCTOBER AND I EASILY CAN DO MORE THAN 90, ALTHOUGH I AM NOT STRETCHING TO REACH MY FEET YET. And how long will it be before I can get back into theswimming pool? I WAS IN THE WATER IN THREE WEEKS.

or the stationary bike (that you allseem to use) when can I use one of them? THIS I DO NOT HAVE. PERHAPS WILL TRY ONE, I JOINED THE YMCA TODAY. It also made me smile the other day when you werechatting about your scar lengths. I had an op when Iwas 3 and my scar from that is 15 inches long. But Iam curious about where your scars are, are they at thefront, side or more on you bum? BACKSIDE. I do have an appointment with my surgeon in a fewweeks, but that seems like ages away at the moment,just wanted to know.Thanks for your help as alwaysLiney ___________________________________________________________ALL-NEW Messenger - all new features - even more fun! http://uk.messenger.

[Guest guest]

Hi, Liney

I would assume that each doctor might have slightly different

responses to questions like you asked. Here is my experience.

I was swimming five weeks after my operation, but I think that some

people do it earlier. You should check with your doctor on that one.

Re: 90º rule. I had a visit with my OS 79 days after my operation,

and he told me that I didn't have to worry about the 90º rule.

However, he also said that I have a prothesis that has " double

flexibilty, " enabling me to move more easily. Perhaps that is true,

but your doctor should be the one who decides.

I've seen pictures of scars that roam all over the place, many on

the bum (butt, fess). Mine goes staight up and down the side of my

hip.

You can see a picture of my scar amongh the photos listed Photos-S

in the link to the left.

I'm having some strange computer experiences at the moment. Forgive

me if this post occurs twice.

Cheers,

Staninfr

> Hi there,

>

> As my op approaches I am beginnning to think of lots

> of questions, the first is about the 90 degree rule.

> Is that a perminant thing or does it, like so many

> other things depend?

>

> And how long will it be before I can get back into the

> swimming pool? or the stationary bike (that you all

> seem to use) when can I one of them?

>

> It also made me smile the other day when you were

> chatting about your scar lengths. I had an op when I

> was 3 and my scar from that is 15 inches long. But I

> am curious about where your scars are, are they at the

> front, side or more on you bum?

>

> I do have an appointment with my surgeon in a few

> weeks, but that seems like ages away at the moment,

> just wanted to know.

>

> Thanks for your help as always

> Liney

>

>

>

>

>

>

>

> ___________________________________________________________ALL-NEW

Messenger - all new features - even more fun!

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[Guest guest]

Liney

I forgot to mention my experience with the stationary bike. The PT

had me doing it moderately during my third week.

I bought a stationary bike before I had my operation and tried to

build up my strength by using it then.

I started using it 10 minutes a day in my fourth week, and started

using it 20 minutes a day in my fifth week.

Once again, I would assume the use of a stationary bike would depend

on the person and his or her doctor.

Stan

> Hi, Liney

>

> I would assume that each doctor might have slightly different

> responses to questions like you asked. Here is my experience.

>

> I was swimming five weeks after my operation, but I think that

some

> people do it earlier. You should check with your doctor on that

one.

>

> Re: 90º rule. I had a visit with my OS 79 days after my

operation,

> and he told me that I didn't have to worry about the 90º rule.

> However, he also said that I have a prothesis that has " double

> flexibilty, " enabling me to move more easily. Perhaps that is

true,

> but your doctor should be the one who decides.

>

> I've seen pictures of scars that roam all over the place, many on

> the bum (butt, fess). Mine goes staight up and down the side of my

> hip.

>

> You can see a picture of my scar amongh the photos listed Photos-S

> in the link to the left.

>

> I'm having some strange computer experiences at the moment.

Forgive

> me if this post occurs twice.

>

> Cheers,

>

> Staninfr

>

>

>

> > Hi there,

> >

> > As my op approaches I am beginnning to think of lots

> > of questions, the first is about the 90 degree rule.

> > Is that a perminant thing or does it, like so many

> > other things depend?

> >

> > And how long will it be before I can get back into the

> > swimming pool? or the stationary bike (that you all

> > seem to use) when can I one of them?

> >

> > It also made me smile the other day when you were

> > chatting about your scar lengths. I had an op when I

> > was 3 and my scar from that is 15 inches long. But I

> > am curious about where your scars are, are they at the

> > front, side or more on you bum?

> >

> > I do have an appointment with my surgeon in a few

> > weeks, but that seems like ages away at the moment,

> > just wanted to know.

> >

> > Thanks for your help as always

> > Liney

> >

> >

> >

> >

> >

> >

> >

> > ___________________________________________________________ALL-

NEW

> Messenger - all new features - even more fun!

> http://uk.messenger.

[Guest guest]

Thanks everyone, I really appreciate everything that

you have to say. Your knowledge is far greater than

mine and I am grateful for you taking time out of your

day to help.

ROll on the 6th Oct!

Liney

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[Guest guest]

Hi liney,

I just wanted to say that you should stay with us and let us know how your do. Well you have a nice day. I wish you the best of luck.

Susiebee Buxton <beeme_99@...> wrote:

Thanks everyone, I really appreciate everything thatyou have to say. Your knowledge is far greater thanmine and I am grateful for you taking time out of yourday to help.ROll on the 6th Oct!Liney ___________________________________________________________ALL-NEW Messenger - all new features - even more fun! http://uk.messenger.

[Guest guest]

Theresa - I can't input on question #1 as it's very difficult for me to walk at all. But I can relate to #2....there are times that I sit on something hard where I can almost hear the clanking of something hard hitting the seat. And so that goes without saying for what it feels like! I can actually feel two tailbones back there now. It used to scare me that with wear it would break through the skin, but after 4 years I'm not so concerned any longer. But it sure alters one's comfort zone while sitting!

~~

[Guest guest]

I had the Schaefer Iliac Bolts put in on my 2nd go-around in 2001, and they've never yet been a problem for me. I don't feel them at all.

~~

[Guest guest]

Theresa.....I do too. But you know where I have the biggest problem with it? On a toilet seat! It's so strange - but I actually have to position myself justtttt right, otherwise that hard seat about feels like its going to drive that rod end right through my skin!

~~

[Guest guest]

Hi Theresa,

I just read your biography post last night and was very moved. What

a tough time of it you've had. I'm happy to hear that you are at

long last able to stand straigth and walk without a cane or walker.

As far as your question goes, during the last

several months I've been experiencing pains very similar to what

you're feeling. I had my revision/fusion to the pelvis one year

ago. Although I can't say that it feels like anything is

poking me when I sit for any length, my hips do get a deep aching

pain that radiates

down my legs and up into my lower back. If I don't get up when this

starts, my legs will slowly go numb, and without my pain meds,the

back pain can become pretty severe. The doc (Rand) has suggested a

good pillow beneath me when sitting and very well padded walking

shoes/sneakers supplemented with those foam or gel inserts for

walking or other activities.

The pillows do help some, and remembering to sit up very straight is

a big help (I tend to lean forward when reading or typing on the

computer) I don't like the shoe inserts. Maybe I'm putting them in

wrong, but my feet feel squashed when I use them. Buying the next

size up sneaker might help with that.

I've gathered from other flatback members and some articles, that

small or slim patients may be more apt to

feel or have more interference from their hardware. Rand has

suggested this to me as well. I'm 5'4 " and weigh in on average about

125 to 130 lbs.

At this point he suggests a wait and see approach. In a couple of

months it may be time to consider shots into the sacrum with some

kind of anesthetic. Both of us agree about not removing any hardware

unless it gets much worse, especially since I'm now starting to see

some great results with pain management since handing that over to

my internist.

I hope this helps. I know I still rely mainly on my

pain meds to get me through most activities of any duration, but at

least wanted to let you know that you're not alone with these pains

and maybe some small changes may help in some way.

Will keep you posted as I progress (not regress, I hope!) and hope

you will as well.

All my best, Dianne S.

> These questions are to anyone: #1 - Does anyone get pain right at

the

> top of the leg on the sides when you walk? What have you done for

it

or

> what helps? Does it slowly go away? I just got back from a mile

walk

> and that is where I have the most problems. #2 - I guess this one

would

> be for folks that are fused to the sacrum or very low - When you

sit,

> does it feel like you can feel the end of the rod? In some chairs

it

> feels like the end of the rod is poking into me. Any answers would

be

> helpful. Theresa

[Guest guest]

Hi Dianne...

I've forgotten... do you have iliac bolts? It sounds like you're

describing the pain that a lot of people have from the bolts. It

seems to me that most (all?) people who have them removed are much

happier when they're out.

Dr. Berven at UCSF is now burring off the heads of the bolts once

they're placed. I have 2 very thin friends who have the burred off

bolts, and neither feels their implants at all.

Regards,

> > These questions are to anyone: #1 - Does anyone get pain right at

> the

> > top of the leg on the sides when you walk? What have you done for

> it

> or

> > what helps? Does it slowly go away? I just got back from a mile

> walk

> > and that is where I have the most problems. #2 - I guess this one

> would

> > be for folks that are fused to the sacrum or very low - When you

> sit,

> > does it feel like you can feel the end of the rod? In some chairs

> it

> > feels like the end of the rod is poking into me. Any answers would

> be

> > helpful. Theresa

[Guest guest]

Hi and , I also can feel the hardware through the skin by my tailbone. It is an eerie feeling. I am 5'2 and only weigh 102 pounds so I don't have much flesh back there and I am so afraid one day it is going to pop out. As some of you know, I have had a problem with bed sores in the past and while we were on vacation 2 weeks ago they opened back up. They are so near the hardware it scares me. Home Health Care did a culture on them Thursday and I go to the doctor on Tuesday to see if they are infected. I know that one of the risks of scoliosis surgery is infection. I don't know if this could lead into that or not. I will find out Tuesday.

Joyce E

Re: [ ] A couple of questions

Theresa - I can't input on question #1 as it's very difficult for me to walk at all. But I can relate to #2....there are times that I sit on something hard where I can almost hear the clanking of something hard hitting the seat. And so that goes without saying for what it feels like! I can actually feel two tailbones back there now. It used to scare me that with wear it would break through the skin, but after 4 years I'm not so concerned any longer. But it sure alters one's comfort zone while sitting!

~~

[Guest guest]

Hi and , I also can feel the hardware through the skin by my tailbone. It is an eerie feeling. I am 5'2 and only weigh 102 pounds so I don't have much flesh back there and I am so afraid one day it is going to pop out. As some of you know, I have had a problem with bed sores in the past and while we were on vacation 2 weeks ago they opened back up. They are so near the hardware it scares me. Home Health Care did a culture on them Thursday and I go to the doctor on Tuesday to see if they are infected. I know that one of the risks of scoliosis surgery is infection. I don't know if this could lead into that or not. I will find out Tuesday.

Joyce E

Re: [ ] A couple of questions

Theresa - I can't input on question #1 as it's very difficult for me to walk at all. But I can relate to #2....there are times that I sit on something hard where I can almost hear the clanking of something hard hitting the seat. And so that goes without saying for what it feels like! I can actually feel two tailbones back there now. It used to scare me that with wear it would break through the skin, but after 4 years I'm not so concerned any longer. But it sure alters one's comfort zone while sitting!

~~

[Guest guest]

Hi Dianne S.

Are you taking the inserts that come in the shoes out before you put the new ones in? If not, that might be why your feet feel cramped.

Joyce E

[ ] Re: A couple of questions

Hi Theresa,I just read your biography post last night and was very moved. What a tough time of it you've had. I'm happy to hear that you are at long last able to stand straigth and walk without a cane or walker. As far as your question goes, during the last several months I've been experiencing pains very similar to what you're feeling. I had my revision/fusion to the pelvis one year ago. Although I can't say that it feels like anything is poking me when I sit for any length, my hips do get a deep aching pain that radiates down my legs and up into my lower back. If I don't get up when this starts, my legs will slowly go numb, and without my pain meds,the back pain can become pretty severe. The doc (Rand) has suggested a good pillow beneath me when sitting and very well padded walking shoes/sneakers supplemented with those foam or gel inserts for walking or other activities. The pillows do help some, and remembering to sit up very straight is a big help (I tend to lean forward when reading or typing on the computer) I don't like the shoe inserts. Maybe I'm putting them in wrong, but my feet feel squashed when I use them. Buying the next size up sneaker might help with that. I've gathered from other flatback members and some articles, that small or slim patients may be more apt to feel or have more interference from their hardware. Rand has suggested this to me as well. I'm 5'4" and weigh in on average about 125 to 130 lbs. At this point he suggests a wait and see approach. In a couple of months it may be time to consider shots into the sacrum with some kind of anesthetic. Both of us agree about not removing any hardware unless it gets much worse, especially since I'm now starting to see some great results with pain management since handing that over to my internist.I hope this helps. I know I still rely mainly on my pain meds to get me through most activities of any duration, but at least wanted to let you know that you're not alone with these pains and maybe some small changes may help in some way.Will keep you posted as I progress (not regress, I hope!) and hopeyou will as well.All my best, Dianne S.> These questions are to anyone: #1 - Does anyone get pain right at the > top of the leg on the sides when you walk? What have you done forit or > what helps? Does it slowly go away? I just got back from a milewalk > and that is where I have the most problems. #2 - I guess this one would > be for folks that are fused to the sacrum or very low - When you sit, > does it feel like you can feel the end of the rod? In some chairsit > feels like the end of the rod is poking into me. Any answers would be > helpful. Theresa

[Guest guest]

Thanks , I was wondering if it was only me and my imagination!!!

I'm glad I'm not alone on that! Even in softer chairs if I have sat for

a while you can feel it as well. Theresa

[Guest guest]

Would the padded seat help? I know they're not *that* soft, but a

little padding might go a long way. Just asking...

> Theresa.....I do too. But you know where I have the biggest

problem with

> it? On a toilet seat! It's so strange - but I actually have to

position

> myself justtttt right, otherwise that hard seat about feels like

its going to

> drive that rod end right through my skin!

> ~~