New Member

[Guest guest]

May I suggest adding tumeric and fresh ginger to your diet?  Can't hurt.

Tis not a cure but may help until your appt.

Raniolo

From: kay.wilde <kay.wilde (DOT) com>

Subject: [ ] New Member

@gro ups.com

Date: Wednesday, March 25, 2009, 2:33 PM

Hi Everyone!

I just joined. I have been tenatively diagnosed with rheumatoid arthritis and

have been referred to a rheumatologist. My first appointment is scheduled for

April 27th. I've been researching everything I can find and have found that one

site contradicts the other on information about what works and what doesn't.

More than anything I'm concerned about taking medication that reports so many

possible side effects.

I don't know why I didn't thing about trying to find a group sooner... and there

you were. In my opinion, there is no better or more reliable source of

information than someone who is going through the same problems.

I'm currently at work and haven't had time to look through past posts to get to

know everyone. I'll do that after I get home this evening.

Kay

[Guest guest]

,

 

I read about the possible benefits of these two herbs but haven't tried them

yet. Like you said it can't hurt but might help until my appointment. Hey, like

I said, I gave the Gin soaked raisins a shot. Didn't work for me, but some

people swear by them.

 

Kay

From: kay.wilde <kay.wilde (DOT) com>

Subject: [ ] New Member

@gro ups.com

Date: Wednesday, March 25, 2009, 2:33 PM

Hi Everyone!

I just joined. I have been tenatively diagnosed with rheumatoid arthritis and

have been referred to a rheumatologist. My first appointment is scheduled for

April 27th. I've been researching everything I can find and have found that one

site contradicts the other on information about what works and what doesn't.

More than anything I'm concerned about taking medication that reports so many

possible side effects.

I don't know why I didn't thing about trying to find a group sooner... and there

you were. In my opinion, there is no better or more reliable source of

information than someone who is going through the same problems.

I'm currently at work and haven't had time to look through past posts to get to

know everyone. I'll do that after I get home this evening.

Kay

[Guest guest]

Hi Kay,

Welcome to the group. I am new myself,but you will quickly find the most

caring,knowledgeable,supportive group of people.

I too tried the gin soaked raisons,they didn't work but boy did I enjoy finding

out!!!

Hope you find a treatment that suits you soon.

Best wishes

x

From: kay.wilde <kay.wilde (DOT) com>

Subject: [ ] New Member

@gro ups.com

Date: Wednesday, March 25, 2009, 2:33 PM

Hi Everyone!

I just joined. I have been tenatively diagnosed with rheumatoid arthritis and

have been referred to a rheumatologist. My first appointment is scheduled for

April 27th. I've been researching everything I can find and have found that one

site contradicts the other on information about what works and what doesn't.

More than anything I'm concerned about taking medication that reports so many

possible side effects.

I don't know why I didn't thing about trying to find a group sooner... and there

you were. In my opinion, there is no better or more reliable source of

information than someone who is going through the same problems.

I'm currently at work and haven't had time to look through past posts to get to

know everyone. I'll do that after I get home this evening.

Kay

[Guest guest]

I've had an ulcer, too, and take arthritis-strength acetominophen,

instead of the NSAID's.

We have to weigh the benefits against the side effects. It's like

walking a tightrope sometimes. I hope you can soon get some relief.

Sue

On Mar 25, 2009, at 6:45 PM, Kay Wilde wrote:

> Thanks Sue,

>

> Nice to meet you. Yeah, I know that medications work differently for

> everyone It's all trial and error. It the errors that worry me. One

> problem I'm already dealing with beyond the obvious is that I was

> diagnosed with an ulcer before this even started. Many of even the

> over the counter pain killers that seem to work bother me.and I know

> that is one of the problems with many of the arthritis medication.

>

> Just starting out, trying to weed through and digest all the info I

> can. Still, it's nice to know that someone has found something that

> works for them with few side effects.

[Guest guest]

Hi , one of my favorite names. Thanks for the welcome.

 

Kay

From: kay.wilde <kay.wilde (DOT) com>

Subject: [ ] New Member

@gro ups.com

Date: Wednesday, March 25, 2009, 2:33 PM

Hi Everyone!

I just joined. I have been tenatively diagnosed with rheumatoid arthritis and

have been referred to a rheumatologist. My first appointment is scheduled for

April 27th. I've been researching everything I can find and have found that one

site contradicts the other on information about what works and what doesn't.

More than anything I'm concerned about taking medication that reports so many

possible side effects.

I don't know why I didn't thing about trying to find a group sooner... and there

you were. In my opinion, there is no better or more reliable source of

information than someone who is going through the same problems.

I'm currently at work and haven't had time to look through past posts to get to

know everyone. I'll do that after I get home this evening.

Kay

[Guest guest]

Sue,

 

Yeah, I know. Trust me, the ulcer issue is at the top of my priority list when I

meet with my new rheumatologist. A list of questions and concerns that will be

typed out and in hand. The goal is to make things better, not worse.

 

Thanks to this group. I'll be more prepared. Being forced to wait so long for my

appointment does in fact seem to be a blessing in disguise.

 

Kay

> Thanks Sue,

>

> Nice to meet you. Yeah, I know that medications work differently for

> everyone It's all trial and error. It the errors that worry me. One

> problem I'm already dealing with beyond the obvious is that I was

> diagnosed with an ulcer before this even started. Many of even the

> over the counter pain killers that seem to work bother me.and I know

> that is one of the problems with many of the arthritis medication.

>

> Just starting out, trying to weed through and digest all the info I

> can. Still, it's nice to know that someone has found something that

> works for them with few side effects.

[Guest guest]

My hubby heard that pineapple helps and he has been feeding it to me non-stop! 

I don't know if it is really doing anything to help, but I love him for trying.

 

Betsy

[Guest guest]

Hi Betsy:

Welcome to our group. I just love that your hubby is trying to help you

get out of pain. I love pineapple too!!

Wishing it works for you!

Hugs,

Barbara

--- In , Farchette <eafarchette@...>

wrote:

>

> My hubby heard that pineapple helps and he has been feeding it to me

non-stop! I don't know if it is really doing anything to help, but I

love him for trying.

>

> Betsy

>

>

>

>

>

[Guest guest]

Hi Kay:

    Thanks, and what you said is so true.  We all know how much we suffer, and

that is why

we all understand what everyone here is going through.

     Wishing you pain free days ahead.

Hugs,

Barbara

From: kay.wilde <kay.wilde (DOT) com>

Subject: [ ] New Member

@gro ups.com

Date: Wednesday, March 25, 2009, 11:33 AM

Hi Everyone!

I just joined. I have been tenatively diagnosed with rheumatoid arthritis and

have been referred to a rheumatologist. My first appointment is scheduled for

April 27th. I've been researching everything I can find and have found that one

site contradicts the other on information about what works and what doesn't.

More than anything I'm concerned about taking medication that reports so many

possible side effects.

I don't know why I didn't thing about trying to find a group sooner... and there

you were. In my opinion, there is no better or more reliable source of

information than someone who is going through the same problems.

I'm currently at work and haven't had time to look through past posts to get to

know everyone. I'll do that after I get home this evening.

Kay

[Guest guest]

Hi Shay,

Welcome to the Group! Please contact Enliven, they have a program that will

help you stay on Enbrel. They helped me when I needed it. Please feel free

to contact me privately if you would like.

Heidi in Mass.

Change will not come if we wait for some other person or some other time. We

are the ones we've been waiting for. We are the change that we seek._

President Barack Obama

In a message dated 3/29/2009 9:23:52 P.M. Eastern Daylight Time,

sweetnsassy55@... writes:

Hi Everyone,

I just joined your group today. My name is Shay and I live in Michigan. I

was diagnosed with severe RA 7 years ago. I take Methotrexate, Folic Acid,

Celebrex, Fentanyl Patches, and until my husband changed jobs and his

insurance would not cover it, was on Enbrel injections once a week. We are

still trying to find a way to get the Enbrel as I am literally scared to

death to try Remicade or Orencia due to I'm allergic to almost every drug

out there.

So I joined to see what choices are out there for me and to see what

experiences other people have had with these drugs.

Thank you for " listening "

Shay

[Non-text portions of this message have been removed]

**************Feeling the pinch at the grocery store? Make meals for Under

$10. (http://food.aol.com/frugal-feasts?ncid=emlcntusfood00000002)

[Guest guest]

Hi Shay,

Welcome to the group. I hope you find a way to get your drugs sorted out. Hang

on in there as someone might be able to give you the information you need. This

group is very supportive and informative. I'm new too but you will find you are

not alone.

Very best wishes

x

________________________________

From: Shay <sweetnsassy55@...>

*RA* < >

Sent: Monday, 30 March, 2009 2:15:33

Subject: [ ] New Member

Hi Everyone,

I just joined your group today. My name is Shay and I live in Michigan. I

was diagnosed with severe RA 7 years ago. I take Methotrexate, Folic Acid,

Celebrex, Fentanyl Patches, and until my husband changed jobs and his

insurance would not cover it, was on Enbrel injections once a week. We are

still trying to find a way to get the Enbrel as I am literally scared to

death to try Remicade or Orencia due to I'm allergic to almost every drug

out there.

So I joined to see what choices are out there for me and to see what

experiences other people have had with these drugs.

Thank you for " listening "

Shay

[Guest guest]

Hi Shay:

Welcome to our wonderful group of caring, informative people. You will

be glad you joined us.

Wishing you pain free days ahead.

Hugs,

Barbara

>

> Hi Everyone,

> I just joined your group today. My name is Shay and I live in

Michigan. I

> was diagnosed with severe RA 7 years ago. I take Methotrexate, Folic

Acid,

> Celebrex, Fentanyl Patches, and until my husband changed jobs and his

> insurance would not cover it, was on Enbrel injections once a week. We

are

> still trying to find a way to get the Enbrel as I am literally scared

to

> death to try Remicade or Orencia due to I'm allergic to almost every

drug

> out there.

> So I joined to see what choices are out there for me and to see what

> experiences other people have had with these drugs.

> Thank you for " listening "

> Shay

>

>

[Guest guest]

hi shay,

i recently joined this group,too, and i am in swartz creek, michigan.

i am not thrilled with my rheumatologist, have seen 4, couple in ann arbor, but

my primary care is wanting to start me on enbrel. so i was asking here what

others have experienced using it. so it sounds like it helped your ra, and not

many side effects?

take care,

marg

>

> Hi Everyone,

> I just joined your group today. My name is Shay and I live in Michigan. I

> was diagnosed with severe RA 7 years ago. I take Methotrexate, Folic Acid,

> Celebrex, Fentanyl Patches, and until my husband changed jobs and his

> insurance would not cover it, was on Enbrel injections once a week. We are

> still trying to find a way to get the Enbrel as I am literally scared to

> death to try Remicade or Orencia due to I'm allergic to almost every drug

> out there.

> So I joined to see what choices are out there for me and to see what

> experiences other people have had with these drugs.

> Thank you for " listening "

> Shay

>

>

[Guest guest]

Hi Marg,

I had no side effects at all. I was afraid at first due to being allergic to

a lot of meds but it worked fantastic for me and wish I still had it. Please

keep in mind that all meds effect everyone differently but I had no problems

Yes, all rheumatologists are different. I was seeing one in Traverse City

and she was wonderful but she went on maternity leave and never came back so

my primary care sent me to one in Big Rapids and he said I was in remission

and wanted me to slowly stop taking all of my meds. What an idiot!! So my

primary care sent me to one in Petosky (I'm still with this one) and she put

me on the Enbrel---so much for being in remission!!!

Myself, I love the Enbrel and it sure works. I hope it works as well for you

Shay in Michigan

-- [ ] Re: New Member

hi shay,

i recently joined this group,too, and i am in swartz creek, michigan.

i am not thrilled with my rheumatologist, have seen 4, couple in ann arbor,

but my primary care is wanting to start me on enbrel. so i was asking here

what others have experienced using it. so it sounds like it helped your ra,

and not many side effects?

take care,

marg

>

> Hi Everyone,

> I just joined your group today. My name is Shay and I live in Michigan. I

> was diagnosed with severe RA 7 years ago. I take Methotrexate, Folic Acid,

> Celebrex, Fentanyl Patches, and until my husband changed jobs and his

> insurance would not cover it, was on Enbrel injections once a week. We are

> still trying to find a way to get the Enbrel as I am literally scared to

> death to try Remicade or Orencia due to I'm allergic to almost every drug

> out there.

> So I joined to see what choices are out there for me and to see what

> experiences other people have had with these drugs.

> Thank you for " listening "

> Shay

>

>

[Guest guest]

Hi Barbara,

Thank you for the Welcome. I have a few to answer but today has been one of

those " Off " days where the pain just won't let up for a sec. I am already so

glad I joined. I can see the people here are so caring and I have learned

quite a bit from the questions just in 2 days.

Take care Hun

Shay in Michigan

-- [ ] Re: New Member

Hi Shay:

Welcome to our wonderful group of caring, informative people. You will

be glad you joined us.

Wishing you pain free days ahead.

Hugs,

Barbara

>

> Hi Everyone,

> I just joined your group today. My name is Shay and I live in

Michigan. I

> was diagnosed with severe RA 7 years ago. I take Methotrexate, Folic

Acid,

> Celebrex, Fentanyl Patches, and until my husband changed jobs and his

> insurance would not cover it, was on Enbrel injections once a week. We

are

> still trying to find a way to get the Enbrel as I am literally scared

to

> death to try Remicade or Orencia due to I'm allergic to almost every

drug

> out there.

> So I joined to see what choices are out there for me and to see what

> experiences other people have had with these drugs.

> Thank you for " listening "

> Shay

>

>

[Guest guest]

Hi ,

Thank you for the Welcome! And also for your kind words. Hopefully we will

get this drug situation worked out and I can get back on my Enbrel. I'm

missing it badly as you can imagine.

Best wishes right back at you!

Shay in Michigan

-- [ ] New Member

Hi Everyone,

I just joined your group today. My name is Shay and I live in Michigan. I

was diagnosed with severe RA 7 years ago. I take Methotrexate, Folic Acid,

Celebrex, Fentanyl Patches, and until my husband changed jobs and his

insurance would not cover it, was on Enbrel injections once a week. We are

still trying to find a way to get the Enbrel as I am literally scared to

death to try Remicade or Orencia due to I'm allergic to almost every drug

out there.

So I joined to see what choices are out there for me and to see what

experiences other people have had with these drugs.

Thank you for " listening "

Shay

[Guest guest]

Hi Shay:

Sorry you are having a bad pain day. They can be so nasty.

I am glad you are happy you joined our group. It has made a big

difference in my life, that's for sure.

I hope you feel better soon, and hope you have many pain free days

ahead.

Hugs,

Barbara

> >

> > Hi Everyone,

> > I just joined your group today. My name is Shay and I live in

> Michigan. I

> > was diagnosed with severe RA 7 years ago. I take Methotrexate, Folic

> Acid,

> > Celebrex, Fentanyl Patches, and until my husband changed jobs and

his

> > insurance would not cover it, was on Enbrel injections once a week.

We

> are

> > still trying to find a way to get the Enbrel as I am literally

scared

> to

> > death to try Remicade or Orencia due to I'm allergic to almost every

> drug

> > out there.

> > So I joined to see what choices are out there for me and to see what

> > experiences other people have had with these drugs.

> > Thank you for " listening "

> > Shay

> >

> >

[Guest guest]

If she has been in PT for quite some time and there isn't much improvement on the tort, it might not be mild.  I would push to get a referral to a craniofacial plastic surgeon for a second opinion on both the tort and plagio.  Hopefully others here know of some good people in your area to see. 

 

My daughter had bad tort and while PT was helping, it wasn't helping enough.  She went in for surgery (botox to relax the muscle) at 6 months old to help resolve it.  At this point they are considering a second one, but are giving PT two more months to work out what's left first.  We've been in PT 2-3 times a week since she was a couple weeks old.  She's now considered to have a mild case of tort, but if there continues to be no improvement in the knot that's left, we'll help it along with botox.

 

For her plagio, has she been measured?  Various places (think all CT offices) will do an evaluation and measure her for free.  Measurements aren't the whole picture, but they will give you and the doctors a better idea of how mild or not she really is and if banding is a good option.  Generally banding is recommended if the asymmetry is 10mm or more.

 

I would push for a referral ASAP because if banding is an option for you, you're quickly leaving the stage with the fastest growth.  You can band for some time yet, but the earlier the better your results will be.

 

Elaine (twin A), plagio & tort, 10mos, 2nd band since 1/5/09

On Mon, Apr 6, 2009 at 2:08 PM, kjacquegk <kjnellamore@...> wrote:

Hello everyone! I somehow came upon this group through a blog, and I am so glad to have found it.Our sweet girl, Mia (almost 9 months), has several issues - including Plagiocephaly and Torticollis. We moved late last year and left our fabulous pediatrician, and our new pediatrician really isn't proactive about any of her medical needs. Unfortunately, we don't really have time to find another one here (and we would need to travel at least an hour).. but I simply don't want to waste time if this can be corrected.

She is in physical therapy (for this and other issues) and has been for quite some time, but even with positioning and stretches, her Torticollis is still apparent. Her head tilts down to the left, and the flatness on her head is mostly on the back right and toward the middle, clearly from having more pressure on that side over time because of developmental delays. Our pediatrician basically wrote it off as 'normal' these days due to the back to sleep campaign, and that it's more prevalent now, do more tummy time (does she not think we've tried that?), etc. She agrees that her head is mishapen, she just doesn't want to do anything about it (or anything else). Needless to say, that's not exactly helpful - but this is unfortunately how she approaches all of her issues.

Anyway, my question is - has anyone's child dealt with both Torticollis and Plagiocephaly, both in a mild form? How did you treat it?And of course, if anyone lives in Georgia, please let me know!Kim

[Guest guest]

,

 

Thank you so much for taking the time to respond!

 

Unfortunately, she recieves OT, PT, and SLP (for feeding).. but we can never get in more than once every two weeks because their schedule is constantly completely booked with new evaluations. It really grates my nerves.. how can they accept new patients for evaluations when their current patients can't get the therapy they need because of it? Makes no sense! When we see our pediatrician today, I told her that I didn't see how 2 minutes of stretching every 2 weeks was going to do any good (I do what I can at home, but I was trying to make a point!).. but like everything else, she didn't have much to say. Sigh.

 

My husband is a Naval officer, so we'll only be here until June, which is why it's kind of pointless to try to find a new pediatrician now. This is actually our second pediatrician here who.. well.. doesn't seem to be able to do more than handle immunizations and runny noses, and not actual medical problems. I just worry constantly that she's getting more behind, and I hate not knowing WHY she has these issues (the developmental delays, especially). I really pushed for an MRI today in regard to her delays (she's at about a 4 month level at 9 months and has such weak upper body strength).. but again, she just shrugged and said we'd wait. I don't get it. Wait for what, exactly? I've been waiting her whole life! Blah. Our old pediatrician really cared, not just because it was her job. She was the kind of doctor who would go above and beyond, call you herself on the weekend to check on things, consult with specialists just to 'be sure', and so on. We really need a doctor like that, but there doesn't seem to be any here! So we would have to go into Atlanta (which I would do, even though it would be 2 hours round trip!) to find someone who can handle actual problems.. but by the time we got in, we'd be moving and I'm not sure we'd make any progress.

 

I'm rambling, sorry! You're right, though.. lately I feel so much pressure to look more into it because of her age - but our pediatrician just doesn't see any reason to investigate anything further, ever (did I say that already? ha!). She just wants to 'wait and see', even though that's clearly not working! I can tell you that her head isn't completely flat, which is why I would use the word 'mild' - I have seen much worse. But at the same time, you can also tell that there's 'more head' on the left than the right when looking from the back (if that makes sense), and her weak side in regard to the Torticollis is also the left. She did refer to that kind of skull deformity as something that I can't recall now, but meaning how it's misshapen and in the front there's even more to one side - but she essentially brushed it off. I always leave more frustrated than when I go in!

 

I had no idea that CT offices would measure at no cost, do you have any idea how I would find out or what I would need to ask?

 

I did try to take some pictures.. I'm not sure how well they came out (it's so hard to capture the true angle of things, I tried - I give you all major kudos!), but I'll try to upload them here!

On Mon, Apr 6, 2009 at 2:00 PM, Lina Gabriev <lina.gabriev@...> wrote:

If she has been in PT for quite some time and there isn't much improvement on the tort, it might not be mild.  I would push to get a referral to a craniofacial plastic surgeon for a second opinion on both the tort and plagio.  Hopefully others here know of some good people in your area to see. 

 

My daughter had bad tort and while PT was helping, it wasn't helping enough.  She went in for surgery (botox to relax the muscle) at 6 months old to help resolve it.  At this point they are considering a second one, but are giving PT two more months to work out what's left first.  We've been in PT 2-3 times a week since she was a couple weeks old.  She's now considered to have a mild case of tort, but if there continues to be no improvement in the knot that's left, we'll help it along with botox.

 

For her plagio, has she been measured?  Various places (think all CT offices) will do an evaluation and measure her for free.  Measurements aren't the whole picture, but they will give you and the doctors a better idea of how mild or not she really is and if banding is a good option.  Generally banding is recommended if the asymmetry is 10mm or more.

 

I would push for a referral ASAP because if banding is an option for you, you're quickly leaving the stage with the fastest growth.  You can band for some time yet, but the earlier the better your results will be.

 

Elaine (twin A), plagio & tort, 10mos, 2nd band since 1/5/09

On Mon, Apr 6, 2009 at 2:08 PM, kjacquegk <kjnellamore@...> wrote:

Hello everyone! I somehow came upon this group through a blog, and I am so glad to have found it.Our sweet girl, Mia (almost 9 months), has several issues - including Plagiocephaly and Torticollis. We moved late last year and left our fabulous pediatrician, and our new pediatrician really isn't proactive about any of her medical needs. Unfortunately, we don't really have time to find another one here (and we would need to travel at least an hour).. but I simply don't want to waste time if this can be corrected.

She is in physical therapy (for this and other issues) and has been for quite some time, but even with positioning and stretches, her Torticollis is still apparent. Her head tilts down to the left, and the flatness on her head is mostly on the back right and toward the middle, clearly from having more pressure on that side over time because of developmental delays. Our pediatrician basically wrote it off as 'normal' these days due to the back to sleep campaign, and that it's more prevalent now, do more tummy time (does she not think we've tried that?), etc. She agrees that her head is mishapen, she just doesn't want to do anything about it (or anything else). Needless to say, that's not exactly helpful - but this is unfortunately how she approaches all of her issues.

Anyway, my question is - has anyone's child dealt with both Torticollis and Plagiocephaly, both in a mild form? How did you treat it?And of course, if anyone lives in Georgia, please let me know!Kim

[Guest guest]

My Hanger ortho told me that the initial consultation/evaluation is free.

My husband is also military so I have done the moving thing and I have found

that if I called my old doctor and told them my desperation, they often could

help me solve at least some of my problem or help in some real way.

If you are going to a military base for your pediatrician, see if they have a

pediatric case manager that you can contact. We had one that was soooooooo

helpful, she even got Tricare to let us see an out-of-state specialist, even

though our pediatrician did not think it was necessary.

Also, any child with delays like yours can get services from the State, but

more importantly you get qualified for services, then when you move, you usually

can get services within a month or less. My son was receiving PT for tort and

the move only interrupted the PT for about a month. The best thing is that the

state people will come to your house. There also is a network that helps

military who have children with delays/ disabilities etc. get services and help

as they move. (I haven't looked into it, but can try to dig it out if you want

it.)

E-mail me if you need more particulars.

Annie

> >

> >> Hello everyone! I somehow came upon this group through a blog, and I am

> >> so glad to have found it.

> >>

> >> Our sweet girl, Mia (almost 9 months), has several issues - including

> >> Plagiocephaly and Torticollis. We moved late last year and left our

fabulous

> >> pediatrician, and our new pediatrician really isn't proactive about any of

> >> her medical needs. Unfortunately, we don't really have time to find another

> >> one here (and we would need to travel at least an hour).. but I simply

don't

> >> want to waste time if this can be corrected.

> >>

> >> She is in physical therapy (for this and other issues) and has been for

> >> quite some time, but even with positioning and stretches, her Torticollis

is

> >> still apparent. Her head tilts down to the left, and the flatness on her

> >> head is mostly on the back right and toward the middle, clearly from having

> >> more pressure on that side over time because of developmental delays. Our

> >> pediatrician basically wrote it off as 'normal' these days due to the back

> >> to sleep campaign, and that it's more prevalent now, do more tummy time

> >> (does she not think we've tried that?), etc. She agrees that her head is

> >> mishapen, she just doesn't want to do anything about it (or anything else).

> >> Needless to say, that's not exactly helpful - but this is unfortunately how

> >> she approaches all of her issues.

> >>

> >> Anyway, my question is - has anyone's child dealt with both Torticollis

> >> and Plagiocephaly, both in a mild form? How did you treat it?

> >>

> >> And of course, if anyone lives in Georgia, please let me know!

> >>

> >> Kim

> >>

> >>

> >

> >

>

[Guest guest]

Annie,

 

Thank you for all of that information!

 

There is no peds on base here, so we have to go off base. And all of the peds in the Prime Network here suck. Most are at a low-income clinic with a horrible reputation, and the few that are left are in a practice we already tried (and will never go back to). Not only that, there's some completely insane unwritten 'rule' here amongst pediatricians... once you see one, NO OTHER DOCTOR will let you switch to them. Seriously. I'm not kidding. The doctor we switched to after the first one we blindly picked before moving here (who later waited until our sweet baby was VERY ill with RSV before doing something) was the ONLY doctor who would take us. NO ONE ELSE will take transferred patients, ONLY newborns. It's absolutely ridiculous. You're completely SDTUCK if you and your doctor don't mesh well or there's some kind of issue. And the problem with her (apart from the fact that she's not proactive at all) is that she's not even in network, so we pay out of pocket for most of our visits - something I was willing to do at the time because I just want her to have the best care. But the problem with that is that Tricare won't allow her to be our PCM since she's not in network. It makes no sense at all.

 

We were going to just switch to the Standard, but then we'd have to pay a lot out of pocket.. not just for visits, for all of her therapy, her specialists, and her prescription formula (she is on Neocate, plus Duocal - a calorie additive, plus Simply Thick - a thickener for Dyphagia, difficulty swallowing). It would just be a significant amount out of pocket. But at this point, I don't know what else to do! Even if I got her current pediatrician to do a referral, Tricare wouldn't take it since they won't consider her our PCM. So I could find another pediatrician, but I'd have to go at least into Atlanta - and that would be a 2 hour round trip several times a week, especially if she switched to therapy there, also.

 

I'm in such a hard place.. I know that she's not getting what she needs - but getting what she really needs is almost impossible at this point. I was hoping that we'll go somewhere closer to a major city/hospital next.. and if we could just hold out a few months, things could work themselves out without switching to Standard (since we won't be able to switch back for a year). Even if I DID switch to Standard, we STILL couldn't switch to another pediatrician here because of their little 'rule' (which REALLY grates my nerves, I think it's ridiculous!). I'm just not sure what else to do. I really don't want to let her issues worsen for 2-3 months before we move, but I'm also not sure that there's anything else I can do (.

 

Kim

On Tue, Apr 7, 2009 at 1:34 AM, ambloved <ambloved@...> wrote:

My Hanger ortho told me that the initial consultation/evaluation is free.My husband is also military so I have done the moving thing and I have found that if I called my old doctor and told them my desperation, they often could help me solve at least some of my problem or help in some real way.

If you are going to a military base for your pediatrician, see if they have a pediatric case manager that you can contact. We had one that was soooooooo helpful, she even got Tricare to let us see an out-of-state specialist, even though our pediatrician did not think it was necessary.

Also, any child with delays like yours can get services from the State, but more importantly you get qualified for services, then when you move, you usually can get services within a month or less. My son was receiving PT for tort and the move only interrupted the PT for about a month. The best thing is that the state people will come to your house. There also is a network that helps military who have children with delays/ disabilities etc. get services and help as they move. (I haven't looked into it, but can try to dig it out if you want it.)

E-mail me if you need more particulars.Annie

> >> >> Hello everyone! I somehow came upon this group through a blog, and I am> >> so glad to have found it.

> >>> >> Our sweet girl, Mia (almost 9 months), has several issues - including> >> Plagiocephaly and Torticollis. We moved late last year and left our fabulous> >> pediatrician, and our new pediatrician really isn't proactive about any of

> >> her medical needs. Unfortunately, we don't really have time to find another> >> one here (and we would need to travel at least an hour).. but I simply don't> >> want to waste time if this can be corrected.

> >>> >> She is in physical therapy (for this and other issues) and has been for> >> quite some time, but even with positioning and stretches, her Torticollis is> >> still apparent. Her head tilts down to the left, and the flatness on her

> >> head is mostly on the back right and toward the middle, clearly from having> >> more pressure on that side over time because of developmental delays. Our> >> pediatrician basically wrote it off as 'normal' these days due to the back

> >> to sleep campaign, and that it's more prevalent now, do more tummy time> >> (does she not think we've tried that?), etc. She agrees that her head is> >> mishapen, she just doesn't want to do anything about it (or anything else).

> >> Needless to say, that's not exactly helpful - but this is unfortunately how> >> she approaches all of her issues.> >>> >> Anyway, my question is - has anyone's child dealt with both Torticollis

> >> and Plagiocephaly, both in a mild form? How did you treat it?> >>> >> And of course, if anyone lives in Georgia, please let me know!> >>> >> Kim> >>

> >>> > > >>

[Guest guest]

I forgot to mention that the way it was explained to me, here in GA, EI is only for children with a diagnosed disease/condition.. like Cerebral Palsy, Downs Syndrome, etc. Mia's unexplained delays, Hypotonia, and Torticollis aren't 'bad enough' for therapy through the state. We get therapy at the biggest hospital here, but they're just SO BUSY.. it's impossible to get in more than once every few weeks, and I just don't see what good that's supposed to do.

 

I would love to hear about the network you were referring to!

 

Kim

On Tue, Apr 7, 2009 at 1:34 AM, ambloved <ambloved@...> wrote:

My Hanger ortho told me that the initial consultation/evaluation is free.My husband is also military so I have done the moving thing and I have found that if I called my old doctor and told them my desperation, they often could help me solve at least some of my problem or help in some real way.

If you are going to a military base for your pediatrician, see if they have a pediatric case manager that you can contact. We had one that was soooooooo helpful, she even got Tricare to let us see an out-of-state specialist, even though our pediatrician did not think it was necessary.

Also, any child with delays like yours can get services from the State, but more importantly you get qualified for services, then when you move, you usually can get services within a month or less. My son was receiving PT for tort and the move only interrupted the PT for about a month. The best thing is that the state people will come to your house. There also is a network that helps military who have children with delays/ disabilities etc. get services and help as they move. (I haven't looked into it, but can try to dig it out if you want it.)

E-mail me if you need more particulars.Annie

> >> >> Hello everyone! I somehow came upon this group through a blog, and I am> >> so glad to have found it.

> >>> >> Our sweet girl, Mia (almost 9 months), has several issues - including> >> Plagiocephaly and Torticollis. We moved late last year and left our fabulous> >> pediatrician, and our new pediatrician really isn't proactive about any of

> >> her medical needs. Unfortunately, we don't really have time to find another> >> one here (and we would need to travel at least an hour).. but I simply don't> >> want to waste time if this can be corrected.

> >>> >> She is in physical therapy (for this and other issues) and has been for> >> quite some time, but even with positioning and stretches, her Torticollis is> >> still apparent. Her head tilts down to the left, and the flatness on her

> >> head is mostly on the back right and toward the middle, clearly from having> >> more pressure on that side over time because of developmental delays. Our> >> pediatrician basically wrote it off as 'normal' these days due to the back

> >> to sleep campaign, and that it's more prevalent now, do more tummy time> >> (does she not think we've tried that?), etc. She agrees that her head is> >> mishapen, she just doesn't want to do anything about it (or anything else).

> >> Needless to say, that's not exactly helpful - but this is unfortunately how> >> she approaches all of her issues.> >>> >> Anyway, my question is - has anyone's child dealt with both Torticollis

> >> and Plagiocephaly, both in a mild form? How did you treat it?> >>> >> And of course, if anyone lives in Georgia, please let me know!> >>> >> Kim> >>

> >>> > > >>

[Guest guest]

Kim,My heart aches for you having to go through this. I can't even imagine the upset of wanting to provide the best for your child and having red tape thwart your every attempt.One thing you may try (if you haven't already): is initially tell the pediatrician's office that it is a newborn but ask for a phone consult with the actual dr. Then once they call you back and you actually get the dr. - tell him/her your predicament. You just might find a warm-hearted person who ignores or bends the 'rule' for you.We are not military, not have we had the amount of issues you have - but we did not mesh well with our first 2 pediatricians and the one that was in network and was highly recommended did not accept transfers, only newborns (Olivia was 2 months old). I talked to the actual dr. and he allowed us to transfer and we

couldn't be happier.I hope that it all works out for you.Blessings,Darcymom to Princess Olivia, 5mo - day 2 in DOC Band

My Hanger ortho told me that the initial consultation/ evaluation is free.My husband is also military so I have done the moving thing and I have found that if I called my old doctor and told them my desperation, they often could help me solve at least some of my problem or help in some real way.

If you are going to a military base for your pediatrician, see if they have a pediatric case manager that you can contact. We had one that was soooooooo helpful, she even got Tricare to let us see an out-of-state specialist, even though our pediatrician did not think it was necessary.

Also, any child with delays like yours can get services from the State, but more importantly you get qualified for services, then when you move, you usually can get services within a month or less. My son was receiving PT for tort and the move only interrupted the PT for about a month. The best thing is that the state people will come to your house. There also is a network that helps military who have children with delays/ disabilities etc. get services and help as they move. (I haven't looked into it, but can try to dig it out if you want it.)

E-mail me if you need more particulars.Annie

> >> >> Hello everyone! I somehow came upon this group through a blog, and I am> >> so glad to have found it.

> >>> >> Our sweet girl, Mia (almost 9 months), has several issues - including> >> Plagiocephaly and Torticollis. We moved late last year and left our fabulous> >> pediatrician, and our new pediatrician really isn't proactive about any of

> >> her medical needs. Unfortunately, we don't really have time to find another> >> one here (and we would need to travel at least an hour).. but I simply don't> >> want to waste time if this can be corrected.

> >>> >> She is in physical therapy (for this and other issues) and has been for> >> quite some time, but even with positioning and stretches, her Torticollis is> >> still apparent. Her head tilts down to the left, and the flatness on her

> >> head is mostly on the back right and toward the middle, clearly from having> >> more pressure on that side over time because of developmental delays. Our> >> pediatrician basically wrote it off as 'normal' these days due to the back

> >> to sleep campaign, and that it's more prevalent now, do more tummy time> >> (does she not think we've tried that?), etc. She agrees that her head is> >> mishapen, she just doesn't want to do anything about it (or anything else).

> >> Needless to say, that's not exactly helpful - but this is unfortunately how> >> she approaches all of her issues.> >>> >> Anyway, my question is - has anyone's child dealt with both Torticollis

> >> and Plagiocephaly, both in a mild form? How did you treat it?> >>> >> And of course, if anyone lives in Georgia, please let me know!> >>> >> Kim> >>

> >>> > > >>

[Guest guest]

Darcy,

 

Thank you for sharing your story. That is a good idea, I just don't think it would work.. I tried several times to plead with other offices before, but no one would budge. I did find a pediatrician who is allegedly " the " pediatrician in Atlanta.. she went to Harvard and did her residency at s Hopkins (not that it really matters, but I'm doing this blindly!).. it would be about 70 miles each way. I still haven't decided what to do. We should know by next week where we're going next and when we're going, and that information will help me make a decision.

 

I did notice today that one of her ears is higher than the other, so now I'm even more concerned. I may even look into whether or not we can see someone (I'm not sure if we need a cranio-facial surgeon or an orthotist, or both?) and just pay out of pocket for the visit and not have a referral. I doubt it, though.

 

And then I have to wonder, even if she started treatment here, we would be moving and I'm not sure how that would work... it would be a whole other issue!

 

Kim

On Tue, Apr 7, 2009 at 11:30 AM, Darcy Brignac <darcybrignac@...> wrote:

Kim,My heart aches for you having to go through this.  I can't even imagine the upset of wanting to provide the best for your child and having red tape thwart your every attempt.One thing you may try (if you haven't already): is initially tell the pediatrician's office that it is a newborn but ask for a phone consult with the actual dr.  Then once they call you back and you actually get the dr. - tell him/her your predicament.  You just might find a warm-hearted person who ignores or bends the 'rule' for you.

We are not military, not have we had the amount of issues you have - but we did not mesh well with our first 2 pediatricians and the one that was in network and was highly recommended did not accept transfers, only newborns (Olivia was 2 months old). I talked to the actual dr. and he allowed us to transfer and we couldn't be happier.

I hope that it all works out for you.Blessings,Darcymom to Princess Olivia, 5mo - day 2 in DOC Band

My Hanger ortho told me that the initial consultation/ evaluation is free.My husband is also military so I have done the moving thing and I have found that if I called my old doctor and told them my desperation, they often could help me solve at least some of my problem or help in some real way.

If you are going to a military base for your pediatrician, see if they have a pediatric case manager that you can contact. We had one that was soooooooo helpful, she even got Tricare to let us see an out-of-state specialist, even though our pediatrician did not think it was necessary.

Also, any child with delays like yours can get services from the State, but more importantly you get qualified for services, then when you move, you usually can get services within a month or less. My son was receiving PT for tort and the move only interrupted the PT for about a month. The best thing is that the state people will come to your house. There also is a network that helps military who have children with delays/ disabilities etc. get services and help as they move. (I haven't looked into it, but can try to dig it out if you want it.)

E-mail me if you need more particulars.Annie

> >> >> Hello everyone! I somehow came upon this group through a blog, and I am> >> so glad to have found it.

> >>> >> Our sweet girl, Mia (almost 9 months), has several issues - including> >> Plagiocephaly and Torticollis. We moved late last year and left our fabulous> >> pediatrician, and our new pediatrician really isn't proactive about any of

> >> her medical needs. Unfortunately, we don't really have time to find another> >> one here (and we would need to travel at least an hour).. but I simply don't> >> want to waste time if this can be corrected.

> >>> >> She is in physical therapy (for this and other issues) and has been for> >> quite some time, but even with positioning and stretches, her Torticollis is> >> still apparent. Her head tilts down to the left, and the flatness on her

> >> head is mostly on the back right and toward the middle, clearly from having> >> more pressure on that side over time because of developmental delays. Our> >> pediatrician basically wrote it off as 'normal' these days due to the back

> >> to sleep campaign, and that it's more prevalent now, do more tummy time> >> (does she not think we've tried that?), etc. She agrees that her head is> >> mishapen, she just doesn't want to do anything about it (or anything else).

> >> Needless to say, that's not exactly helpful - but this is unfortunately how> >> she approaches all of her issues.> >>> >> Anyway, my question is - has anyone's child dealt with both Torticollis

> >> and Plagiocephaly, both in a mild form? How did you treat it?> >>> >> And of course, if anyone lives in Georgia, please let me know!> >>> >> Kim> >>

> >>> > > >>

[Guest guest]

An ortho is the person that works with the helmet itself.  They can do a lot on their own as far as fixing the skull shape, but that's it.  In your case I would get a second opinion from a craniofacial plastic surgeon because of all the other factors your dealing with.  If it was just plagio/brachey and maybe mild tort than you could probably skip that step.  A craniofacial doctor looks at factors that asymmetry can effect, like misaligned ears/eyes/jaw and so on of the head and neck.  A nero surgeon would be a good option as well, though they are less friendly to banding as a general rule unless it's effecting the brain, which generally doesn't happen except in the most extreme cases. 

 

I don't think there's a good answer other than to demand referrals from an in network doctor.  If you can get a free eval, it will probably help your case.  I feel for you and hope you can get someone to budge somewhere and get the help you need.

 

Elaine (twin A) tort & plagio, 10mos, 2nd helmet since 1/5/09

 

 

On Tue, Apr 7, 2009 at 1:45 PM, K S <trying4two@...> wrote:

Darcy,

 

Thank you for sharing your story. That is a good idea, I just don't think it would work.. I tried several times to plead with other offices before, but no one would budge. I did find a pediatrician who is allegedly " the " pediatrician in Atlanta.. she went to Harvard and did her residency at s Hopkins (not that it really matters, but I'm doing this blindly!).. it would be about 70 miles each way. I still haven't decided what to do. We should know by next week where we're going next and when we're going, and that information will help me make a decision.

 

I did notice today that one of her ears is higher than the other, so now I'm even more concerned. I may even look into whether or not we can see someone (I'm not sure if we need a cranio-facial surgeon or an orthotist, or both?) and just pay out of pocket for the visit and not have a referral. I doubt it, though.

 

And then I have to wonder, even if she started treatment here, we would be moving and I'm not sure how that would work... it would be a whole other issue!

 

Kim

On Tue, Apr 7, 2009 at 11:30 AM, Darcy Brignac <darcybrignac@...> wrote:

Kim,My heart aches for you having to go through this.  I can't even imagine the upset of wanting to provide the best for your child and having red tape thwart your every attempt.One thing you may try (if you haven't already): is initially tell the pediatrician's office that it is a newborn but ask for a phone consult with the actual dr.  Then once they call you back and you actually get the dr. - tell him/her your predicament.  You just might find a warm-hearted person who ignores or bends the 'rule' for you.

We are not military, not have we had the amount of issues you have - but we did not mesh well with our first 2 pediatricians and the one that was in network and was highly recommended did not accept transfers, only newborns (Olivia was 2 months old). I talked to the actual dr. and he allowed us to transfer and we couldn't be happier.

I hope that it all works out for you.Blessings,Darcymom to Princess Olivia, 5mo - day 2 in DOC Band

My Hanger ortho told me that the initial consultation/ evaluation is free.My husband is also military so I have done the moving thing and I have found that if I called my old doctor and told them my desperation, they often could help me solve at least some of my problem or help in some real way.

If you are going to a military base for your pediatrician, see if they have a pediatric case manager that you can contact. We had one that was soooooooo helpful, she even got Tricare to let us see an out-of-state specialist, even though our pediatrician did not think it was necessary.

Also, any child with delays like yours can get services from the State, but more importantly you get qualified for services, then when you move, you usually can get services within a month or less. My son was receiving PT for tort and the move only interrupted the PT for about a month. The best thing is that the state people will come to your house. There also is a network that helps military who have children with delays/ disabilities etc. get services and help as they move. (I haven't looked into it, but can try to dig it out if you want it.)

E-mail me if you need more particulars.Annie

> >> >> Hello everyone! I somehow came upon this group through a blog, and I am> >> so glad to have found it.

> >>> >> Our sweet girl, Mia (almost 9 months), has several issues - including> >> Plagiocephaly and Torticollis. We moved late last year and left our fabulous> >> pediatrician, and our new pediatrician really isn't proactive about any of

> >> her medical needs. Unfortunately, we don't really have time to find another> >> one here (and we would need to travel at least an hour).. but I simply don't> >> want to waste time if this can be corrected.

> >>> >> She is in physical therapy (for this and other issues) and has been for> >> quite some time, but even with positioning and stretches, her Torticollis is> >> still apparent. Her head tilts down to the left, and the flatness on her

> >> head is mostly on the back right and toward the middle, clearly from having> >> more pressure on that side over time because of developmental delays. Our> >> pediatrician basically wrote it off as 'normal' these days due to the back

> >> to sleep campaign, and that it's more prevalent now, do more tummy time> >> (does she not think we've tried that?), etc. She agrees that her head is> >> mishapen, she just doesn't want to do anything about it (or anything else).

> >> Needless to say, that's not exactly helpful - but this is unfortunately how> >> she approaches all of her issues.> >>> >> Anyway, my question is - has anyone's child dealt with both Torticollis

> >> and Plagiocephaly, both in a mild form? How did you treat it?> >>> >> And of course, if anyone lives in Georgia, please let me know!> >>> >> Kim> >>

> >>> > > >>