What to do

[Guest guest]

That sounds like 40 mg of pred a week...I meant per day..starting a

week after the surgury. sorry.

>

> Hi guys...I guess I've been quiet for a few days...been feeling

> pretty good after my latest episode. I was in really bad shape

> after my tooth got pulled because I had to go down to 20 MG of

Pred

> and nothing else. I could barely walk for while there. I went up

> to 40 MG a week after my tooth surgery and it helped, but I was

> teetering. So the Dr had me come in for a booster shot of pred.

> 80MG last Friday. (I also started back on Humira and MTX last

> week). Man did I have a few good days! I felt so darn close to

> normal it was wonderful. Still got really tired in the

> afternoon...but hardly any pain!. Well, I guess it's wearing

out.

> I'm getting stiff again and my hand and wrist are in tremendous

> pain...and today my knees are feeling it again. My question

is...do

> you think it's safe to ask for another booster shot? I'm going on

> vacation for a week starting Saturday and I sure don't want to

feel

> like **** the whole time. Any other ideas that have helped you

guys

> in a pinch like this? I just want to get this under control. It

> seems like I've been in this bad flare (with a few good moments)

> since March and I'm tired of it! Any input would be appreciated!

> Thanks guys,

> in SA

>

[Guest guest]

That sounds like 40 mg of pred a week...I meant per day..starting a

week after the surgury. sorry.

>

> Hi guys...I guess I've been quiet for a few days...been feeling

> pretty good after my latest episode. I was in really bad shape

> after my tooth got pulled because I had to go down to 20 MG of

Pred

> and nothing else. I could barely walk for while there. I went up

> to 40 MG a week after my tooth surgery and it helped, but I was

> teetering. So the Dr had me come in for a booster shot of pred.

> 80MG last Friday. (I also started back on Humira and MTX last

> week). Man did I have a few good days! I felt so darn close to

> normal it was wonderful. Still got really tired in the

> afternoon...but hardly any pain!. Well, I guess it's wearing

out.

> I'm getting stiff again and my hand and wrist are in tremendous

> pain...and today my knees are feeling it again. My question

is...do

> you think it's safe to ask for another booster shot? I'm going on

> vacation for a week starting Saturday and I sure don't want to

feel

> like **** the whole time. Any other ideas that have helped you

guys

> in a pinch like this? I just want to get this under control. It

> seems like I've been in this bad flare (with a few good moments)

> since March and I'm tired of it! Any input would be appreciated!

> Thanks guys,

> in SA

>

[Guest guest]

, we just got back from vacation back on Saturday and I know

exactly how you feel. The nervous questions, will you have a flare,

will you be able to do things, will you forgot your pills or forget

to take your pills...etc. Let's start with the shot.

So far as I know (you maybe different) the doctor probably won't give

you another shot like that for another couple of months. If the

prednisone isn't taking away the inflamation and/or pain you may need

something else. You have to call the doctor to find out what can be

done.

On the vacation side of things it's amazing what happens. As soon as

we stepped on the ship (we took a cruise) I began to relax and some

of my pain went away or eased. As the days went on (I was still

taking prednisone but only 10 mgs) I didn't hurt as much; as a matter

of fact some of our excursions required walking and climbing and I

actually did it. By the way, I do NOT recommend climbing the Mayan

ruins unless you have someone to help you. Walk through the

rainforest, though, was educational and rejuvinating.

Take a deep breath, and try to relax a bit. I know it's hard

to do but give it a try. My pain returned to me once our vacation

was done and I had to face real life again so I'm going to say a

small piece of pain is stress. Reduce that and you give yourself a

little more room for movement.

Take care and be well.

Ellen

[Guest guest]

, we just got back from vacation back on Saturday and I know

exactly how you feel. The nervous questions, will you have a flare,

will you be able to do things, will you forgot your pills or forget

to take your pills...etc. Let's start with the shot.

So far as I know (you maybe different) the doctor probably won't give

you another shot like that for another couple of months. If the

prednisone isn't taking away the inflamation and/or pain you may need

something else. You have to call the doctor to find out what can be

done.

On the vacation side of things it's amazing what happens. As soon as

we stepped on the ship (we took a cruise) I began to relax and some

of my pain went away or eased. As the days went on (I was still

taking prednisone but only 10 mgs) I didn't hurt as much; as a matter

of fact some of our excursions required walking and climbing and I

actually did it. By the way, I do NOT recommend climbing the Mayan

ruins unless you have someone to help you. Walk through the

rainforest, though, was educational and rejuvinating.

Take a deep breath, and try to relax a bit. I know it's hard

to do but give it a try. My pain returned to me once our vacation

was done and I had to face real life again so I'm going to say a

small piece of pain is stress. Reduce that and you give yourself a

little more room for movement.

Take care and be well.

Ellen

[Guest guest]

Hey Ellen, thanks for the encouraging words. I am sooo looking forward to going

on my stress free vacation. Certainly not exotic as yours, which sounds

wonderful by the way. But I do get to go see my babies and their babies in

north Texas. You're probably right that a lot of this is caused by stress. I'm

just trying to do one or two things a day to get ready...but at times it seems

so overwhelming. I'm hoping to get to see my RD on Thursday before I go, but

I'm going to have to wait...plus I have a lot to do on the job before I go.

There I go getting stressed again. LOL

Anyway, Thank you again and welcome back home!

Re: what to do

, we just got back from vacation back on Saturday and I know

exactly how you feel. The nervous questions, will you have a flare,

will you be able to do things, will you forgot your pills or forget

to take your pills...etc. Let's start with the shot.

So far as I know (you maybe different) the doctor probably won't give

you another shot like that for another couple of months. If the

prednisone isn't taking away the inflamation and/or pain you may need

something else. You have to call the doctor to find out what can be

done.

On the vacation side of things it's amazing what happens. As soon as

we stepped on the ship (we took a cruise) I began to relax and some

of my pain went away or eased. As the days went on (I was still

taking prednisone but only 10 mgs) I didn't hurt as much; as a matter

of fact some of our excursions required walking and climbing and I

actually did it. By the way, I do NOT recommend climbing the Mayan

ruins unless you have someone to help you. Walk through the

rainforest, though, was educational and rejuvinating.

Take a deep breath, and try to relax a bit. I know it's hard

to do but give it a try. My pain returned to me once our vacation

was done and I had to face real life again so I'm going to say a

small piece of pain is stress. Reduce that and you give yourself a

little more room for movement.

Take care and be well.

Ellen

[Guest guest]

Hey Ellen, thanks for the encouraging words. I am sooo looking forward to going

on my stress free vacation. Certainly not exotic as yours, which sounds

wonderful by the way. But I do get to go see my babies and their babies in

north Texas. You're probably right that a lot of this is caused by stress. I'm

just trying to do one or two things a day to get ready...but at times it seems

so overwhelming. I'm hoping to get to see my RD on Thursday before I go, but

I'm going to have to wait...plus I have a lot to do on the job before I go.

There I go getting stressed again. LOL

Anyway, Thank you again and welcome back home!

Re: what to do

, we just got back from vacation back on Saturday and I know

exactly how you feel. The nervous questions, will you have a flare,

will you be able to do things, will you forgot your pills or forget

to take your pills...etc. Let's start with the shot.

So far as I know (you maybe different) the doctor probably won't give

you another shot like that for another couple of months. If the

prednisone isn't taking away the inflamation and/or pain you may need

something else. You have to call the doctor to find out what can be

done.

On the vacation side of things it's amazing what happens. As soon as

we stepped on the ship (we took a cruise) I began to relax and some

of my pain went away or eased. As the days went on (I was still

taking prednisone but only 10 mgs) I didn't hurt as much; as a matter

of fact some of our excursions required walking and climbing and I

actually did it. By the way, I do NOT recommend climbing the Mayan

ruins unless you have someone to help you. Walk through the

rainforest, though, was educational and rejuvinating.

Take a deep breath, and try to relax a bit. I know it's hard

to do but give it a try. My pain returned to me once our vacation

was done and I had to face real life again so I'm going to say a

small piece of pain is stress. Reduce that and you give yourself a

little more room for movement.

Take care and be well.

Ellen

[Guest guest]

Easier said than done but , do what you can to relax and REALLY

enjoy! You deserve this vacation, you've more than earned it.

Have a great time, work will wait until you get back as will the house

cleaning. Go, drink it in!

Take care and be well.

Ellen

[Guest guest]

Easier said than done but , do what you can to relax and REALLY

enjoy! You deserve this vacation, you've more than earned it.

Have a great time, work will wait until you get back as will the house

cleaning. Go, drink it in!

Take care and be well.

Ellen

[Guest guest]

,

Fourteen years is certainly a long time to be positive, but there are certainly more people now who have lived fifteen and more years longer with this virus. A little over a week ago was my 13th anniversary of being diagnosed with full blown AIDS and 12 CD 4 cells. The date of my infection probably goes as far back as 1984.

When my future looked bleak back in 1996 I had to find a way to come to terms and peace with dying too, because that's what seemed to be so close. On one hand I can understand your acceptance from my own experiences.

On the other hand, if it were me in your situation there is absolutely no doubt in my mind that I would take the drugs that my doctor prescribes, hang on for dear life, deal with the side effects, and resolve to wake up tomorrow morning, make it through that day, and continue along.

Three years ago an acquaintance of a very close friend died from AIDS related complications. There were other challenging factors in his life, but at one point he simply stopped taking his medications and stopped seeing his doctor. By the time my friend became aware of this man's course of action, his physical health had detioriated to the point that death was inevitable. My friend visited the man in the hospital every couple of days and then when he was transferred to a nursing home to die. In this case death didn't happen overnight. It was long and drawn out and from the accounts I listened to, ugly and tragic. The day of his death I met my friend and another friend of the man at the nursing home and waited for a family member to eventually show. The condition his body was in will be an image that haunts me for a very long time. If you have watched scenes of people in concentration camps then you have seen something close.

I accept that my death will come at some time as it seems you have. Until then, I will take every single pill and every painful injection of Fuzeon and make peace with the side effects.

It was months before my 12 CD 4 cells increased and years that I lived with them under a 100. Your immune system may be shot now, you say you have maybe only a little more than a year with meds, but I say that miracles happen.

But a year without drugs gives opportunistic infections a chance to attack you. Opportunistic infections are insidious and, speaking from my experience, PCP is frightening and horribly painful. Whatever your decision will be, I sincerely hope that you will not have to suffer through or for very long PCP or any of the other OIs.

Your friends obviously care about you deeply. I won't say that you are crazy, but this is something I would never contemplate.

Joe

>hey every one i hope that every one is doing well. I do have a question that i would like people to help with. I have been HIV positive for 14 years . and I have been on meds in the past off and on for a couple of years . Ive never really stayed on meds for any real length of time ... I dont like taked the meds they make me very sick no matter what they put me on. the deal is when i went back to the doctor last week my doctor almost inseted on me going back on meds because now I HAVE NO IMMUNE SYSTEM and now I have full blown AIDS but too be real honest with my doctor and every one else . I dont want to go back on meds. I have been HIV

positive for over 14 years I have accepted my life and Im ok with dieing . as you can say my spiritual life is wonderful and Ive been ready to cross over for a long time. lots of people think that im crazy. with out meds I have a good year or a little more and with meds maybe a little longer ... I have a month before I have to go back with my ansewer so any comments would be grateful thank you donald <

[Guest guest]

Remember.. that starting and stopping of hiv meds has shown to have very negative effects on the cardio system, causing all kinds of problems.. Best to always stay on meds, according to the latest data. A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

"I have been HIV positive for 14 years . and I have been on meds in the past off and on for a couple of years . Ive never really stayed on meds for any real length of time ... I dont like taked the meds they make me very sick no matter what they put me on. the deal is when i went back to the doctor last week my doctor almost inseted on me going back on meds because now I HAVE NO IMMUNE SYSTEM and now I have full blown AIDS but too be real honest with my doctor and every one else . I dont want to go back on meds. I have been HIV positive for over 14 years I have accepted my life and Im ok with dieing",I am sorry you find yourself in this position, not just medically, but emotionally.I have been fortunate in my 20+ years not to have had many issues with medications, but I know others have had far more difficulties. One of my very dear friends had the same feelings as you, and after years off medications, began to have illnesses and issues that brought him close to accepting death. I offered him a "deal:" He would try meds for three months. At the end of that period, if he felt so sick from meds that life was not worth living, that I would never again mention the subject to him, and let him die in peace. Luckily, about three weeks into the trial, he felt so good, his spirits were so restored by the feeling of returning health, that the subject never came up again, and he's the picture of health and happiness. If I were your physician, I would try to negotiate a similar pact with you, but I might also try to spend some time talking this through. To me, life seems so compelling that if someone wants to die or accepts death prematurely, it seems a sign of depression or despondency, not a reasoned decision made with a clear mind. We often discuss on this list the link between a positive attitude and combatting disease. We seldom face the reverse, that disease can take away our clear, healthy view of the world. Have you talked to a counsellor of any kind about your feelings? For most people, life on meds becomes so banal that the only issue is trying to remember to take the things. With all the new medications, this is more than ever the situation for the overwhelming majority.I am very concerned for you, and hope you'll share your feelings with your doctor and perhaps a counsellor. I think life has far more wonderful things in store for you in the future, if you can get through this.Yours,JB

[Guest guest]

Hello! First of all I am so happy that I found a group of parents who can relate

to what my youngest son, Ayden, and our family is going through. Ayden just

turned 1 last week. He is a strong boy, who loves to be silly, and has infantile

scoliosis. He has a 21 degree dextroconvex curve between the T5 and L4. After a

2 month wait we finally saw an Ortho last week, only for the doctor to take 5

minutes asking us family history questions, and then tell us to wait 4-5 month

to see if it gets worse. Ayden, although he is a year old, cannot sit

unassisted, crawl, or even use his arms to reach for toys or hold his bottles

(he was deamed to have low muscle tone- but we have no confirmation on whether

this is scoliosis related). I am sooooo frustrated. I have a 1 year old, who we

have been told by his developmental pediatrician, functions like a 3-4 month

old. Immediately after the appnt with the Ortho I called both his PCP and

Developmental specialist to ask if they could refer us to another Ortho for a

second opinion. They both told us to just wait it out, like the Ortho had also

told us to do. I refuse to sit here and let my son get further behing in life.

Is there anyone else in the Kansas City area that can offer advise or a great

Ortho for us to get a second opinion? Or has anyone else had a problem with all

doctors telling them to wait it out?

[Guest guest]

I am fairly new to the site as well, but from everything I have learned or read, you don't want to wait. It is imperative to get the Early treatment with casting, while his spine is still flexable. Our pediatrician didn't even notice our son's curve during exams. We had to point out to him at 9 month well visit. Even after, he said to wait until 1 yr visit. At 1 yr, it was still a problem and only after we pointed out again, did he agree to get us x- rays. These of course confirmed our suspicion. The Otho we saw wanted to cast, but after researching and asking questions, their hospital didn't have the necessary casting table to do correctly. We now are scheduled to see another doctor at Shriner's.Sent from my iPhoneOn Nov 11, 2011, at 9:21 AM, "" <alicia.marie@...> wrote:

Hello! First of all I am so happy that I found a group of parents who can relate to what my youngest son, Ayden, and our family is going through. Ayden just turned 1 last week. He is a strong boy, who loves to be silly, and has infantile scoliosis. He has a 21 degree dextroconvex curve between the T5 and L4. After a 2 month wait we finally saw an Ortho last week, only for the doctor to take 5 minutes asking us family history questions, and then tell us to wait 4-5 month to see if it gets worse. Ayden, although he is a year old, cannot sit unassisted, crawl, or even use his arms to reach for toys or hold his bottles (he was deamed to have low muscle tone- but we have no confirmation on whether this is scoliosis related). I am sooooo frustrated. I have a 1 year old, who we have been told by his developmental pediatrician, functions like a 3-4 month old. Immediately after the appnt with the Ortho I called both his PCP and Developmental specialist to ask if they could refer us to another Ortho for a second opinion. They both told us to just wait it out, like the Ortho had also told us to do. I refuse to sit here and let my son get further behing in life. Is there anyone else in the Kansas City area that can offer advise or a great Ortho for us to get a second opinion? Or has anyone else had a problem with all doctors telling them to wait it out?

[Guest guest]

Wow that sounds similar to our story. I, as a massaage therapist, noticed the

curve on my son's backk at 4 months. I asked his pediatrician about it and he

didnt seem concerned. At his 10 month checkup I insisted on xrays and it was

confirmed he has scoliosis. You are lucky to have doctors who are willing to

cast. I have heard so many wonderful things about Shriner's hospitals! There is

not one here in the Kansas City area. my husband and I are debating on whether

to drive to St Lois to see someone at the Shriners there. Do you know anything

about whether a doctors referral is needed for Shrinerrs hospitals?

>

> > Hello! First of all I am so happy that I found a group of parents who can

relate to what my youngest son, Ayden, and our family is going through. Ayden

just turned 1 last week. He is a strong boy, who loves to be silly, and has

infantile scoliosis. He has a 21 degree dextroconvex curve between the T5 and

L4. After a 2 month wait we finally saw an Ortho last week, only for the doctor

to take 5 minutes asking us family history questions, and then tell us to wait

4-5 month to see if it gets worse. Ayden, although he is a year old, cannot sit

unassisted, crawl, or even use his arms to reach for toys or hold his bottles

(he was deamed to have low muscle tone- but we have no confirmation on whether

this is scoliosis related). I am sooooo frustrated. I have a 1 year old, who we

have been told by his developmental pediatrician, functions like a 3-4 month

old. Immediately after the appnt with the Ortho I called both his PCP and

Developmental specialist to ask if they could refer us to another Ortho for a

second opinion. They both told us to just wait it out, like the Ortho had also

told us to do. I refuse to sit here and let my son get further behing in life.

Is there anyone else in the Kansas City area that can offer advise or a great

Ortho for us to get a second opinion? Or has anyone else had a problem with all

doctors telling them to wait it out?

> >

> >

>

[Guest guest]

I'de try Dr. N.P. at Mercy General in Kansas City, MO. If his contact

info isnt yet up on the CAST database section email me direct at

isop06@...

Sincerely,

HRH

> Hello! First of all I am so happy that I found a group of parents who can

> relate to what my youngest son, Ayden, and our family is going through.

> Ayden just turned 1 last week. He is a strong boy, who loves to be silly,

> and has infantile scoliosis. He has a 21 degree dextroconvex curve between

> the T5 and L4. After a 2 month wait we finally saw an Ortho last week,

> only for the doctor to take 5 minutes asking us family history questions,

> and then tell us to wait 4-5 month to see if it gets worse. Ayden,

> although he is a year old, cannot sit unassisted, crawl, or even use his

> arms to reach for toys or hold his bottles (he was deamed to have low

> muscle tone- but we have no confirmation on whether this is scoliosis

> related). I am sooooo frustrated. I have a 1 year old, who we have been

> told by his developmental pediatrician, functions like a 3-4 month old.

> Immediately after the appnt with the Ortho I called both his PCP and

> Developmental specialist to ask if they could refer us to another Ortho

> for a second opinion. They both told us to just wait it out, like the

> Ortho had also told us to do. I refuse to sit here and let my son get

> further behing in life. Is there anyone else in the Kansas City area that

> can offer advise or a great Ortho for us to get a second opinion? Or has

> anyone else had a problem with all doctors telling them to wait it out?

>

>

[Guest guest]

Childrens Mercy General (in Missouri) and Childrens Mercy South (in Kansas) are

both connected. We have been going to both for the numerous appointments. If you

remember who else had posted about Childrens Mercy let me know. I will try to

scan some posts also. I emailed Shriners in St Lois about whether we need a

referral, or can just scehedule an appnt. I have never had to deal with med

services and the way everything operates so I probably sound dumb. Our insurance

is excellent, but all the copays are adding up- especially since we have had so

many appointments only to find out they were pointless until he gets his MRI in

Dec. Which means all those copays and appnts were for nothing and must be

repeated. Grrrr!

Sent via BlackBerry by AT & T

Re: Re: What to do

Maybe think about a second opinion. I think TX ish Rite and ST Louis are

the closest facilities in driving distance. My Mil just retired from KU Med.

Don't think you would go there....... Not sure they have services. I will ask

her. There was another parent on this site not happy w Childrens Mercy. Maybe

they will see your post n have a suggestion. Would the branch in mo have

different physicians? Or is that the one you are at.

Sent from my iPhone

On Nov 11, 2011, at 10:59 AM, " " <alicia.marie@...> wrote:

Thank you for the replies and suggestions! We saw an ortho at Children's Mercy

General (I hesitate to say names because I do not have a good thing to say about

him). All of my son's doctors are Children's Mercy related... which is why I

hesitate to get a second opinion at Children's Mercy. I have heard a couple

people mention KU Med Center as a place nearby to try also. We are also working

with an early intervention program through the state and have an occupational

therapist and physical therapist visit the house once a week. He is also severly

near sighted with an astigmatism and has worn glasses for about 4 months now. We

have had so appointments and doctors visit I just feel so overwhelmed.

Genetics clinic is next week, and we are still waiting until late Dec before he

can get an MRI. I have been very unimpressed with Children's Mercy (thoughh up

until now they have always been THE best- we have 2 older children and we would

never dream of taking

them anywhere else). Part of me wants to keep trying to get help and answers

and the other part wants to take a deep breath and see what happens over the

next 4 months. Do I keep pressing to find a second opinion, or wait like the

Ortho told us????

Hello! First of all I am so happy that I found a group of parents who can relate

to what my youngest son, Ayden, and our family is going through. Ayden just

turned 1 last week. He is a strong boy, who loves to be silly, and has infantile

scoliosis. He has a 21 degree dextroconvex curve between the T5 and L4. After a

2 month wait we finally saw an Ortho last week, only for the doctor to take 5

minutes asking us family history questions, and then tell us to wait 4-5 month

to see if it gets worse. Ayden, although he is a year old, cannot sit

unassisted, crawl, or even use his arms to reach for toys or hold his bottles

(he was deamed to have low muscle tone- but we have no confirmation on whether

this is scoliosis related). I am sooooo frustrated. I have a 1 year old, who we

have been told by his developmental pediatrician, functions like a 3-4 month

old. Immediately after the appnt with the Ortho I called both his PCP and

Developmental specialist to ask if

they could refer us to another Ortho for a second opinion. They both told us to

just wait it out, like the Ortho had also told us to do. I refuse to sit here

and let my son get further behing in life. Is there anyone else in the Kansas

City area that can offer advise or a great Ortho for us to get a second opinion?

Or has anyone else had a problem with all doctors telling them to wait it out?

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

[Guest guest]

I might try that. All appnts were set up through our developmental speialist

because we were given a 9 month wait for MRI and he got it bumped to 4 months.

We are on the cancellation list thankfully. Thank you so much for your help! I

hate to sound so negative all the time- it helps to vent and get advise and

answers though!

Sent via BlackBerry by AT & T

Re: Re: What to do

Call and try to reschedule the MRI to bump the time frame up. Just play dumb and

call and say you cannot come that day bc something came up and if possible you

would like to reschedule at an earlier date. It's called the appointment game:)

Im a pro at it. If that's not possible see if there is a waiting list for

cancelations.

Sent from my iPhone

On Nov 11, 2011, at 11:15 AM, " " <alicia.marie@...> wrote:

I think because we are so new to this I feel like I dont even know where to

begin. We have seen a cardiologist, ortho, developmental specialist and have

Genetics clinic on Monday... so far every doctor has said " I need to wait for

MRI results " ... all these doctors are a part of the same medical hospital-all

appnts were set up by our PCP at the same time, so my frustration is do we have

to wait 4 month for an MRI, but all of the doctors appointments were schelduled

before an MRI was ever done...

Hello! First of all I am so happy that I found a group of parents who can relate

to what my youngest son, Ayden, and our family is going through. Ayden just

turned 1 last week. He is a strong boy, who loves to be silly, and has infantile

scoliosis. He has a 21 degree dextroconvex curve between the T5 and L4. After a

2 month wait we finally saw an Ortho last week, only for the doctor to take 5

minutes asking us family history questions, and then tell us to wait 4-5 month

to see if it gets worse. Ayden, although he is a year old, cannot sit

unassisted, crawl, or even use his arms to reach for toys or hold his bottles

(he was deamed to have low muscle tone- but we have no confirmation on whether

this is scoliosis related). I am sooooo frustrated. I have a 1 year old, who we

have been told by his developmental pediatrician, functions like a 3-4 month

old. Immediately after the appnt with the Ortho I called both his PCP and

Developmental specialist to ask if

they could refer us to another Ortho for a second opinion. They both told us to

just wait it out, like the Ortho had also told us to do. I refuse to sit here

and let my son get further behing in life. Is there anyone else in the Kansas

City area that can offer advise or a great Ortho for us to get a second opinion?

Or has anyone else had a problem with all doctors telling them to wait it out?

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

[Guest guest]

,

this is the first email I opened today so maybe down the list of reading

these I will find out that someone has already offered you great advise,

but we do not live that far away from you & thought I could offer up a

suggestion. We live in Nebraska & saw a wonderful pediatric orthopedic

doctor at the Children's of Omaha. If you are in the KC area that would

be about a four hour drive? We didn't end up using him for casting, but

he really is an amazing doctor without a big ego to boot. We chose to go

to Shriner's SLC for casting because he honestly told us that is where he

would take his own son...but that being said I would have been ok with him

casting my son too. I know without a doubt that he knows enough to know

when he doesn't know enough , but also where to send you for the right

treatment for you....this is not a one size fits all doc that recommends

the same thing for everyone. He might be able to get you where you need

to be, even if its not with him. My research shows he did his fellowship

at the Texas ish rite hospital that is talked about on here

sometimes..... If you want more info just email me privately

Amber

mommy to Levi

1st cast SLC 31* down to 16/17* in cast

> Hello! First of all I am so happy that I found a group of parents who can

> relate to what my youngest son, Ayden, and our family is going through.

> Ayden just turned 1 last week. He is a strong boy, who loves to be silly,

> and has infantile scoliosis. He has a 21 degree dextroconvex curve between

> the T5 and L4. After a 2 month wait we finally saw an Ortho last week,

> only for the doctor to take 5 minutes asking us family history questions,

> and then tell us to wait 4-5 month to see if it gets worse. Ayden,

> although he is a year old, cannot sit unassisted, crawl, or even use his

> arms to reach for toys or hold his bottles (he was deamed to have low

> muscle tone- but we have no confirmation on whether this is scoliosis

> related). I am sooooo frustrated. I have a 1 year old, who we have been

> told by his developmental pediatrician, functions like a 3-4 month old.

> Immediately after the appnt with the Ortho I called both his PCP and

> Developmental specialist to ask if they could refer us to another Ortho

> for a second opinion. They both told us to just wait it out, like the

> Ortho had also told us to do. I refuse to sit here and let my son get

> further behing in life. Is there anyone else in the Kansas City area that

> can offer advise or a great Ortho for us to get a second opinion? Or has

> anyone else had a problem with all doctors telling them to wait it out?

>

>

[Guest guest]

Thank you . All of his doctors are out of Mercy so I am hesitant to get a

second opinion from another doctor there...

>

> I'de try Dr. N.P. at Mercy General in Kansas City, MO. If his contact

> info isnt yet up on the CAST database section email me direct at

> isop06@...

> Sincerely,

> HRH

>

> > Hello! First of all I am so happy that I found a group of parents who can

> > relate to what my youngest son, Ayden, and our family is going through.

> > Ayden just turned 1 last week. He is a strong boy, who loves to be silly,

> > and has infantile scoliosis. He has a 21 degree dextroconvex curve between

> > the T5 and L4. After a 2 month wait we finally saw an Ortho last week,

> > only for the doctor to take 5 minutes asking us family history questions,

> > and then tell us to wait 4-5 month to see if it gets worse. Ayden,

> > although he is a year old, cannot sit unassisted, crawl, or even use his

> > arms to reach for toys or hold his bottles (he was deamed to have low

> > muscle tone- but we have no confirmation on whether this is scoliosis

> > related). I am sooooo frustrated. I have a 1 year old, who we have been

> > told by his developmental pediatrician, functions like a 3-4 month old.

> > Immediately after the appnt with the Ortho I called both his PCP and

> > Developmental specialist to ask if they could refer us to another Ortho

> > for a second opinion. They both told us to just wait it out, like the

> > Ortho had also told us to do. I refuse to sit here and let my son get

> > further behing in life. Is there anyone else in the Kansas City area that

> > can offer advise or a great Ortho for us to get a second opinion? Or has

> > anyone else had a problem with all doctors telling them to wait it out?

> >

> >

>

[Guest guest]

And you know what else? Nebraska has a huge medical hub and research center. My

son has a genetic disorder and the research for his syndrome is based out of

Nebraska. There is also a family I know from Louisiana that moved to Omaha for

treatment for their child who has a rare condition. So if you suspect underlying

problems you may look inti med treatment in Omaha.

T

Sent from my iPhone

On Nov 11, 2011, at 12:13 PM, " Amber Scholl " <amber@...> wrote:

,

this is the first email I opened today so maybe down the list of reading

these I will find out that someone has already offered you great advise,

but we do not live that far away from you & thought I could offer up a

suggestion. We live in Nebraska & saw a wonderful pediatric orthopedic

doctor at the Children's of Omaha. If you are in the KC area that would

be about a four hour drive? We didn't end up using him for casting, but

he really is an amazing doctor without a big ego to boot. We chose to go

to Shriner's SLC for casting because he honestly told us that is where he

would take his own son...but that being said I would have been ok with him

casting my son too. I know without a doubt that he knows enough to know

when he doesn't know enough , but also where to send you for the right

treatment for you....this is not a one size fits all doc that recommends

the same thing for everyone. He might be able to get you where you need

to be, even if its not with him. My research shows he did his fellowship

at the Texas ish rite hospital that is talked about on here

sometimes..... If you want more info just email me privately

Amber

mommy to Levi

1st cast SLC 31* down to 16/17* in cast

Hello! First of all I am so happy that I found a group of parents who can

relate to what my youngest son, Ayden, and our family is going through.

Ayden just turned 1 last week. He is a strong boy, who loves to be silly,

and has infantile scoliosis. He has a 21 degree dextroconvex curve between

the T5 and L4. After a 2 month wait we finally saw an Ortho last week,

only for the doctor to take 5 minutes asking us family history questions,

and then tell us to wait 4-5 month to see if it gets worse. Ayden,

although he is a year old, cannot sit unassisted, crawl, or even use his

arms to reach for toys or hold his bottles (he was deamed to have low

muscle tone- but we have no confirmation on whether this is scoliosis

related). I am sooooo frustrated. I have a 1 year old, who we have been

told by his developmental pediatrician, functions like a 3-4 month old.

Immediately after the appnt with the Ortho I called both his PCP and

Developmental specialist to ask if they could refer us to another Ortho

for a second opinion. They both told us to just wait it out, like the

Ortho had also told us to do. I refuse to sit here and let my son get

further behing in life. Is there anyone else in the Kansas City area that

can offer advise or a great Ortho for us to get a second opinion? Or has

anyone else had a problem with all doctors telling them to wait it out?

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

[Guest guest]

I had the same experience with my daughter Cordelia. She had her first ortho appt that showed an S curve of 24 degrees with significant rotation. Ortho wanted us to wait 6 months to see what her spine would do. It was not sitting well with me so I was on the phone with her almost daily. After about a week she agreed to have her come back in in just 2 months for my peace of mind. Two months later it showed that her curve had decreased 4 degrees! Based on that we're comfortable saying that shes self-resolving (though her rotation had not decreased, the ortho says that it will follow suit). If I had waited the full 6 months I'd still be wondering what in the world was going on! My advice would be to follow your gut. If

you're not comfortable waiting 4-5 months, call her and request a sooner set of x-rays. If she doesn't want to, go for that second opinion!

Dziuban

From: <alicia.marie@...>infantile scoliosis treatment Sent: Friday, November 11, 2011 9:21 AMSubject: What to do

Hello! First of all I am so happy that I found a group of parents who can relate to what my youngest son, Ayden, and our family is going through. Ayden just turned 1 last week. He is a strong boy, who loves to be silly, and has infantile scoliosis. He has a 21 degree dextroconvex curve between the T5 and L4. After a 2 month wait we finally saw an Ortho last week, only for the doctor to take 5 minutes asking us family history questions, and then tell us to wait 4-5 month to see if it gets worse. Ayden, although he is a year old, cannot sit unassisted, crawl, or even use his arms to reach for toys or hold his bottles (he was deamed to have low muscle tone- but we have no confirmation on whether this is scoliosis related). I am sooooo frustrated. I have a 1 year old, who we have been told by his developmental pediatrician, functions like a 3-4 month old. Immediately after the appnt with the Ortho I called both his PCP and Developmental specialist to

ask if they could refer us to another Ortho for a second opinion. They both told us to just wait it out, like the Ortho had also told us to do. I refuse to sit here and let my son get further behing in life. Is there anyone else in the Kansas City area that can offer advise or a great Ortho for us to get a second opinion? Or has anyone else had a problem with all doctors telling them to wait it out?

[Guest guest]

Tame,

You might be the first person ever to give Nebraska props !! Most people

honestly don't even know where the state is located...other than in a corn

field...I'm not kidding! You really made me smile! Yes Omaha is a huge site

for medical research... Football too *down the road in Lincoln* GBR!! (go big

red) but this weekends game @ Penn St. just makes me sad...we don't want to win

that way

Amber

mommy to Levi

>

> ,

> this is the first email I opened today so maybe down the list of reading

> these I will find out that someone has already offered you great advise,

> but we do not live that far away from you & thought I could offer up a

> suggestion. We live in Nebraska & saw a wonderful pediatric orthopedic

> doctor at the Children's of Omaha. If you are in the KC area that would

> be about a four hour drive? We didn't end up using him for casting, but

> he really is an amazing doctor without a big ego to boot. We chose to go

> to Shriner's SLC for casting because he honestly told us that is where he

> would take his own son...but that being said I would have been ok with him

> casting my son too. I know without a doubt that he knows enough to know

> when he doesn't know enough , but also where to send you for the right

> treatment for you....this is not a one size fits all doc that recommends

> the same thing for everyone. He might be able to get you where you need

> to be, even if its not with him. My research shows he did his fellowship

> at the Texas ish rite hospital that is talked about on here

> sometimes..... If you want more info just email me privately

> Amber

> mommy to Levi

> 1st cast SLC 31* down to 16/17* in cast

>

>

> Hello! First of all I am so happy that I found a group of parents who can

> relate to what my youngest son, Ayden, and our family is going through.

> Ayden just turned 1 last week. He is a strong boy, who loves to be silly,

> and has infantile scoliosis. He has a 21 degree dextroconvex curve between

> the T5 and L4. After a 2 month wait we finally saw an Ortho last week,

> only for the doctor to take 5 minutes asking us family history questions,

> and then tell us to wait 4-5 month to see if it gets worse. Ayden,

> although he is a year old, cannot sit unassisted, crawl, or even use his

> arms to reach for toys or hold his bottles (he was deamed to have low

> muscle tone- but we have no confirmation on whether this is scoliosis

> related). I am sooooo frustrated. I have a 1 year old, who we have been

> told by his developmental pediatrician, functions like a 3-4 month old.

> Immediately after the appnt with the Ortho I called both his PCP and

> Developmental specialist to ask if they could refer us to another Ortho

> for a second opinion. They both told us to just wait it out, like the

> Ortho had also told us to do. I refuse to sit here and let my son get

> further behing in life. Is there anyone else in the Kansas City area that

> can offer advise or a great Ortho for us to get a second opinion? Or has

> anyone else had a problem with all doctors telling them to wait it out?

>

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Are you kidding mr I'm from the wheat state of KS and have lived in Beattie

ks.... A blink away from big red territory. My extended family are all farmers

from Palmer (population 125) and I grew up primarily in Manhattan home of the

wildcats! I was hoping some summer when we are home we could visit the research

facility in case they have studies Ben could participate in. Yah who would think

Nebraska would be a big medical hub right? I have heard good things about the

docs. I guess word gets around even in the plains...

Tame

Sent from my iPhone

On Nov 11, 2011, at 1:25 PM, " Amber " <amber@...> wrote:

Tame,

You might be the first person ever to give Nebraska props !! Most people

honestly don't even know where the state is located...other than in a corn

field...I'm not kidding! You really made me smile! Yes Omaha is a huge site

for medical research... Football too *down the road in Lincoln* GBR!! (go big

red) but this weekends game @ Penn St. just makes me sad...we don't want to win

that way

Amber

mommy to Levi

,

this is the first email I opened today so maybe down the list of reading

these I will find out that someone has already offered you great advise,

but we do not live that far away from you & thought I could offer up a

suggestion. We live in Nebraska & saw a wonderful pediatric orthopedic

doctor at the Children's of Omaha. If you are in the KC area that would

be about a four hour drive? We didn't end up using him for casting, but

he really is an amazing doctor without a big ego to boot. We chose to go

to Shriner's SLC for casting because he honestly told us that is where he

would take his own son...but that being said I would have been ok with him

casting my son too. I know without a doubt that he knows enough to know

when he doesn't know enough , but also where to send you for the right

treatment for you....this is not a one size fits all doc that recommends

the same thing for everyone. He might be able to get you where you need

to be, even if its not with him. My research shows he did his fellowship

at the Texas ish rite hospital that is talked about on here

sometimes..... If you want more info just email me privately

Amber

mommy to Levi

1st cast SLC 31* down to 16/17* in cast

Hello! First of all I am so happy that I found a group of parents who can

relate to what my youngest son, Ayden, and our family is going through.

Ayden just turned 1 last week. He is a strong boy, who loves to be silly,

and has infantile scoliosis. He has a 21 degree dextroconvex curve between

the T5 and L4. After a 2 month wait we finally saw an Ortho last week,

only for the doctor to take 5 minutes asking us family history questions,

and then tell us to wait 4-5 month to see if it gets worse. Ayden,

although he is a year old, cannot sit unassisted, crawl, or even use his

arms to reach for toys or hold his bottles (he was deamed to have low

muscle tone- but we have no confirmation on whether this is scoliosis

related). I am sooooo frustrated. I have a 1 year old, who we have been

told by his developmental pediatrician, functions like a 3-4 month old.

Immediately after the appnt with the Ortho I called both his PCP and

Developmental specialist to ask if they could refer us to another Ortho

for a second opinion. They both told us to just wait it out, like the

Ortho had also told us to do. I refuse to sit here and let my son get

further behing in life. Is there anyone else in the Kansas City area that

can offer advise or a great Ortho for us to get a second opinion? Or has

anyone else had a problem with all doctors telling them to wait it out?

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

[Guest guest]

It is good to see some people in my area on here! My husband went to K-State! I

will def look into Nebraska for treatment and second opinions!

>

> ,

> this is the first email I opened today so maybe down the list of reading

> these I will find out that someone has already offered you great advise,

> but we do not live that far away from you & thought I could offer up a

> suggestion. We live in Nebraska & saw a wonderful pediatric orthopedic

> doctor at the Children's of Omaha. If you are in the KC area that would

> be about a four hour drive? We didn't end up using him for casting, but

> he really is an amazing doctor without a big ego to boot. We chose to go

> to Shriner's SLC for casting because he honestly told us that is where he

> would take his own son...but that being said I would have been ok with him

> casting my son too. I know without a doubt that he knows enough to know

> when he doesn't know enough , but also where to send you for the right

> treatment for you....this is not a one size fits all doc that recommends

> the same thing for everyone. He might be able to get you where you need

> to be, even if its not with him. My research shows he did his fellowship

> at the Texas ish rite hospital that is talked about on here

> sometimes..... If you want more info just email me privately

> Amber

> mommy to Levi

> 1st cast SLC 31* down to 16/17* in cast

>

>

> Hello! First of all I am so happy that I found a group of parents who can

> relate to what my youngest son, Ayden, and our family is going through.

> Ayden just turned 1 last week. He is a strong boy, who loves to be silly,

> and has infantile scoliosis. He has a 21 degree dextroconvex curve between

> the T5 and L4. After a 2 month wait we finally saw an Ortho last week,

> only for the doctor to take 5 minutes asking us family history questions,

> and then tell us to wait 4-5 month to see if it gets worse. Ayden,

> although he is a year old, cannot sit unassisted, crawl, or even use his

> arms to reach for toys or hold his bottles (he was deamed to have low

> muscle tone- but we have no confirmation on whether this is scoliosis

> related). I am sooooo frustrated. I have a 1 year old, who we have been

> told by his developmental pediatrician, functions like a 3-4 month old.

> Immediately after the appnt with the Ortho I called both his PCP and

> Developmental specialist to ask if they could refer us to another Ortho

> for a second opinion. They both told us to just wait it out, like the

> Ortho had also told us to do. I refuse to sit here and let my son get

> further behing in life. Is there anyone else in the Kansas City area that

> can offer advise or a great Ortho for us to get a second opinion? Or has

> anyone else had a problem with all doctors telling them to wait it out?

>

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

What's your husbands name? Maybe I know him.... But probably not! I don't know

if Nebraska has metha trained docs but it would be a good place to start for

answers. Though there are probably better facilities closer to you, you could

look into Texas ish rite and go through the application process. It took us

a few months to get in and get our first apt. It wouldn't hurt to have a

possible backup plan incase. Just google it and on the left of the screen there

is a link for new patients. The first step is a phone call w the social worker.

If you go through the process to get accepted at least you would have that part

outa the way even if u don't go there. Good luck! As far as genetics go my son

was 2 before he was diagnosed which I guess is pretty common. I'm glad you are

recieving OT and PT. We did too and in addition our son started speech at 1. He

is still dev delayed but gas really climbed mountains and progressed so much I

just can't believe if!

He sat at 10m, talked at 2 1/2, and walked at 19m. Early intervention really

helped us track his progress and push him forward!

Tame

Sent from my iPhone

On Nov 11, 2011, at 2:56 PM, " " <alicia.marie@...> wrote:

It is good to see some people in my area on here! My husband went to K-State! I

will def look into Nebraska for treatment and second opinions!

,

this is the first email I opened today so maybe down the list of reading

these I will find out that someone has already offered you great advise,

but we do not live that far away from you & thought I could offer up a

suggestion. We live in Nebraska & saw a wonderful pediatric orthopedic

doctor at the Children's of Omaha. If you are in the KC area that would

be about a four hour drive? We didn't end up using him for casting, but

he really is an amazing doctor without a big ego to boot. We chose to go

to Shriner's SLC for casting because he honestly told us that is where he

would take his own son...but that being said I would have been ok with him

casting my son too. I know without a doubt that he knows enough to know

when he doesn't know enough , but also where to send you for the right

treatment for you....this is not a one size fits all doc that recommends

the same thing for everyone. He might be able to get you where you need

to be, even if its not with him. My research shows he did his fellowship

at the Texas ish rite hospital that is talked about on here

sometimes..... If you want more info just email me privately

Amber

mommy to Levi

1st cast SLC 31* down to 16/17* in cast

Hello! First of all I am so happy that I found a group of parents who can

relate to what my youngest son, Ayden, and our family is going through.

Ayden just turned 1 last week. He is a strong boy, who loves to be silly,

and has infantile scoliosis. He has a 21 degree dextroconvex curve between

the T5 and L4. After a 2 month wait we finally saw an Ortho last week,

only for the doctor to take 5 minutes asking us family history questions,

and then tell us to wait 4-5 month to see if it gets worse. Ayden,

although he is a year old, cannot sit unassisted, crawl, or even use his

arms to reach for toys or hold his bottles (he was deamed to have low

muscle tone- but we have no confirmation on whether this is scoliosis

related). I am sooooo frustrated. I have a 1 year old, who we have been

told by his developmental pediatrician, functions like a 3-4 month old.

Immediately after the appnt with the Ortho I called both his PCP and

Developmental specialist to ask if they could refer us to another Ortho

for a second opinion. They both told us to just wait it out, like the

Ortho had also told us to do. I refuse to sit here and let my son get

further behing in life. Is there anyone else in the Kansas City area that

can offer advise or a great Ortho for us to get a second opinion? Or has

anyone else had a problem with all doctors telling them to wait it out?

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