Confused

[Guest guest]

Hi Kendra,

So sorry this took me so long! Been out of town and busy with holiday stuff. The Craniocap is more of a full helmet with a hole on the top. I'm not sure how similar it is to the DOC Band but I believe the DOC Band provides more active pressure to the bulging areas than the Cap does? Maybe someone else knows that info??? I took ANdrew in for adjustments very often. The first week we were there 3 times. Then it was about every week or two. Depends on the child's growth spurt!

Hope that was helpful but let me know if there's something else!

('s mom)

----- Original Message -----

From: & Kendra

Plagiocephalyegroups

Sent: Monday, December 18, 2000 11:10 PM

Subject: Re: confused

Hi,

Our son, wore the Craniocap. We got it through Dr. Wood at Gillette Children's in St. , MN. We had

good results with it. (We are noticing some regresson now but not sure why?) Let me know if you need more info.

Thanx ! Is it a band-type device, or full helmet? How often did you go for adjustments? Is it similar to the DOC Band? Kendra

[Guest guest]

Thanx a lot, !!

Kendra

Baran wrote:

Hi Kendra, So

sorry this took me so long! Been out of town and busy with holiday

stuff. The Craniocap is more of a full helmet with a hole on the

top. I'm not sure how similar it is to the DOC Band but I believe

the DOC Band provides more active pressure to the bulging areas than the

Cap does? Maybe someone else knows that info??? I took ANdrew

in for adjustments very often. The first week we were there 3 times.

Then it was about every week or two. Depends on the child's growth

spurt! Hope that was helpful but let me know

if there's something else! ('s mom)

----- Original Message -----

From:

& Kendra

Plagiocephalyegroups

Sent: Monday, December 18, 2000 11:10

PM

Subject: Re: confused

Hi,

Our son, wore the Craniocap. We got it through Dr. Wood at Gillette Children's in St. , MN. We had

good results with it. (We are noticing some regresson now but not sure why?) Let me know if you need more info.

Thanx !

Is it a band-type device, or full helmet? How often did you go

for adjustments? Is it similar to the DOC Band?

Kendra

[Guest guest]

Stasia,

Your orthotist (the one who fits with the band) will be doing all

the adjusments, mearsurements, re-checks, etc. It may be the same person who

took the cast of your son's head. When you go in for the fitting you can ask

specifically which orthotist will be doing the follow-up appointments. More

than likely when you are all through the specialist who wrote the script will

want to do an exit exam of your son's head. Until then your orthotist will

be your best friend! :-)

Hope this helps!

Marci (Mom to )

Oklahoma

[Guest guest]

In Australia ..... you are referred to the orthopaedist (actually my

orthopaedist thinks that he is the only one in the country at the

moment) and he casts, designs and makes the helmet. He sees you for a

one month check up and if needed he will adjust the helmet on

instruction. The plastic surgeon does all other follow up and decides

how long treatment should be.

-----Original Message-----

From: Stasia [mailto:SGIB2001@...]

Sent: Friday, 16 March 2001 3:41

Plagiocephaly

Subject: Confused

Okay - We went for the fitting the other day and it was so crazy that

things are just now sinking in and I just thought of something else.

When we visited the Neurologist (for a tremor in 's leg)

he started examining his head and said it was severe plagiocephaly.

We then told him that we just had him casted for a band and that he

would wear that.

The doctor asked me who would be following his treatment...I had no

idea. No one had said anything to me about that. We went to an

independent company located in the hospital with a script from a

neurosurgeon in the same hospital.

Who follows the care? I am clueless! Now I am feeling stupid

because I didn't ask the right questions...What else should I be

finding out about?

Thanks!

Stasia

[Guest guest]

Stasia:

Here are some questions to ask....

http://www.plagiocephaly.org/support/questions_for_the_doctor.htm

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...

----- Original Message -----

From: Stasia

Plagiocephaly

Sent: Thursday, March 15, 2001 9:41 AM

Subject: Confused

Okay - We went for the fitting the other day and it was so crazy that things are just now sinking in and I just thought of something else.When we visited the Neurologist (for a tremor in 's leg) he started examining his head and said it was severe plagiocephaly. We then told him that we just had him casted for a band and that he would wear that.The doctor asked me who would be following his treatment...I had no idea. No one had said anything to me about that. We went to an independent company located in the hospital with a script from a neurosurgeon in the same hospital.Who follows the care? I am clueless! Now I am feeling stupid because I didn't ask the right questions...What else should I be finding out about?Thanks!Stasia

[Guest guest]

Stasia,

Trust me you are not the first one to think of all these wonderful

questions to ask the doctors after you left the office. ;0)

With Sam, we went through a local orthotist and we go back to her for

checkups. We also go to the cf plastic surgeon who wrote the scrip

every 2 months to check on changes etc. But, primarily we see the

orthotist. I would check with the dr. who wrote the scrip and see

when he wants to see again.

I hope this helps. Also, glad you joined. (I the one who has been

off due to 5 KIDS :0) ;0)

and Sam

banded 1/01

> Okay - We went for the fitting the other day and it was so crazy

that

> things are just now sinking in and I just thought of something else.

>

> When we visited the Neurologist (for a tremor in 's leg)

> he started examining his head and said it was severe

plagiocephaly.

> We then told him that we just had him casted for a band and that he

> would wear that.

>

> The doctor asked me who would be following his treatment...I had no

> idea. No one had said anything to me about that. We went to an

> independent company located in the hospital with a script from a

> neurosurgeon in the same hospital.

>

> Who follows the care? I am clueless! Now I am feeling stupid

> because I didn't ask the right questions...What else should I be

> finding out about?

>

> Thanks!

> Stasia

[Guest guest]

Dear Amber,

When you called the school did you tell them you wanted Hunter (which by the

way is adorable)! evaluated for early intervention? They may have been

talking about the preschool disabled program. Which makes sense.

I strongly suggest before you have him evaluated by any one in the school

district to go and see a Ped. neurologist or a developmental Ped. I cannot

stress that enough. Get a diagnosis from a Dr. before you start dealing with

the district. You will need their reports to back you up in order to get

Hunter what he needs.

Early Intervention is responsible for Hunter until he turns 3. That's when

the School District takes over. That's why they told you they couldn't

evaluate him until he was 2.9. Find out who you have to call for early

intervention, the School should be able to give you a contact. Even if he get

services for only a couple of month's it's worth it.

After that you can start dealing with the school.

I can't stress enough to you that you need to get him evaluated by a Dr.

Hope this helps. Keep us posted.

Take Care

de Poortere

Mom to 5 and Bobby 3

Bernardsville NJ

Director of Fundraising

CHERAB Foundation

[Guest guest]

Tami:

I am sure you are extremely confused with the differing opinions

you're receiving. In the end, the ultimate decision is yours & your

family's. Do whatever YOU want to do & make the best decision for

YOUR daughter. It's a good idea to appeal your ins. in the

meantime. You'll probably have an even harder time getting it

approved w/o your neurosurgeon's help. Good luck! Let us know

whatever you decide. Mommy's know best

Debbie Abby's mom DOCgrad

MI

> Hi All,

>

> Well the latest update on Annika is that insurance

> denied the band, based on the first neurosurgeon's

> opinion that it was not medically necessary. Annika

> is now 10 months old with moderate plagio (no tort),

> no facial assymetry and minor ear misalignment.

>

> We talked to a local orthotist who does the Starband,

> and she did not recommend the band. We also talked to

> Cranial Tech who said that she could " benefit from the

> band. " So we decided to get a second opinion - a well

> respected pediatric neurosurgeon in our area who sees

> dozens of these cases each week. He told us that he

> did not recommend the band and that she would continue

> to round out over time. She has a 5-6 mm difference

> between the longest and shortest points, but a 22

> degree arc (whatever that means).

>

> So now we are really confused! We have four

> professionals telling us not to do the band and CT

> saying yes. At some point we feel like we have to

> trust the professionals. We are taking pictures and

> have decided to monitor the progress for the next

> month. In the interim, I am going to appeal the

> denial.

>

> The thing is that the flat spot is not noticeable to

> anyone other than us unless we tell them about it.

> She has a lot of hair which hides it until her hair is

> wet.

> Anyway, I am rambling now. I just thought I would give

> a status and see if anyone has had a similar

> experience or diagnosis.

>

> Thanks,

> Tami (mom to Annika)

>

> __________________________________________________

>

[Guest guest]

Tami,

I can see why you are confused! Wow - lots of different opinions. Ultimately

I would say to go with your gut instinct. 's plagio was severe and

obvious so there was no question in our mind! Good luck and let us know what

you decide.

Marci (Mom to )

Oklahoma

[Guest guest]

Debbie:

Thanks for the words of encouragement. I appreciate

it!

Tami

--- debbieandabby <dj2kirby@...> wrote:

> Tami:

> I am sure you are extremely confused with the

> differing opinions

> you're receiving. In the end, the ultimate decision

> is yours & your

> family's. Do whatever YOU want to do & make the

> best decision for

> YOUR daughter. It's a good idea to appeal your ins.

> in the

> meantime. You'll probably have an even harder time

> getting it

> approved w/o your neurosurgeon's help. Good luck!

> Let us know

> whatever you decide. Mommy's know best

> Debbie Abby's mom DOCgrad

> MI

>

>

>

> > Hi All,

> >

> > Well the latest update on Annika is that insurance

> > denied the band, based on the first neurosurgeon's

> > opinion that it was not medically necessary.

> Annika

> > is now 10 months old with moderate plagio (no

> tort),

> > no facial assymetry and minor ear misalignment.

> >

> > We talked to a local orthotist who does the

> Starband,

> > and she did not recommend the band. We also talked

> to

> > Cranial Tech who said that she could " benefit from

> the

> > band. " So we decided to get a second opinion - a

> well

> > respected pediatric neurosurgeon in our area who

> sees

> > dozens of these cases each week. He told us that

> he

> > did not recommend the band and that she would

> continue

> > to round out over time. She has a 5-6 mm

> difference

> > between the longest and shortest points, but a 22

> > degree arc (whatever that means).

> >

> > So now we are really confused! We have four

> > professionals telling us not to do the band and CT

> > saying yes. At some point we feel like we have to

> > trust the professionals. We are taking pictures

> and

> > have decided to monitor the progress for the next

> > month. In the interim, I am going to appeal the

> > denial.

> >

> > The thing is that the flat spot is not noticeable

> to

> > anyone other than us unless we tell them about it.

>

> > She has a lot of hair which hides it until her

> hair is

> > wet.

> > Anyway, I am rambling now. I just thought I would

> give

> > a status and see if anyone has had a similar

> > experience or diagnosis.

> >

> > Thanks,

> > Tami (mom to Annika)

> >

> > __________________________________________________

> >

[Guest guest]

My massage therapist suggests ice on sore sppots after a good massage. Each

massage leaves me feeling better. I did start with ten minute massages for

several weeks before working up to the hour-long sessions.

[Guest guest]

Judi,

I've only had one professional massage in my life and the same thing

happened to me. That is why I only had one professional massage in my life.

They say massage releases toxins that are in your muscles. That is why they

tell you to drink a lot of water, it helps flush the body of the toxins.

Of course it could be a good old flare, but my bets are on the massage.

I hope when this passes, you feel the benefit of the massage.

a

> Hello all,

>

> I'm a little puzzled. I had a very nice 1-hour massage yesterday. I

> don't think it could be considered deep tissue, but she did work me

> over pretty good (except my hands, which were hurting, and I asked

> her not to do them.) She said my back and legs were especially tight.

>

> But last night, and again today I was in some pretty awful pain. The

> hands are the worst, but everything else hurts too, hips, knees,

> ankles, elbows, shoulders (which haven't bothered me much before)even

> my toes. My temp is up too. I did drink a lot of water, which I

> knew is necessary, but I just don't know what can explain all this

> sudden pain. Since I still don't have a firm diagnosis of what sort

> of arthritic condition I have (except for my pcp saying it is

> definitely arthritic) I don't know where to look for answers. I

> don't see the IU rheumy center until May 12. I'm supposed to stop

> taking all the meds. by this Saturday, but the Bextra hasn't been

> helping the past few days anyway. I've been on the tetracycline now

> for 2 weeks with no results I can detect. I'm keeping a journal of

> pain and stiffness.

>

> Could the massage have triggered something? Or is this just a good

> ole fashioned flare?

>

> I hate to go into the biopsy this Friday feeling so awful, but I

> don't want to delay that either. Even the massage person commented

> on all the lumps on my back and arms.

>

> OK, 'nuff grousing on my part. Time to get back to work, too. I

> plan to muck about in the garden this afternoon, I don't care how

> much it hurts! It is 70 degrees, sunny, and I'm going to play with

> my grandson. We're planting green beans today.

>

> Warm hugs from sunny Indiana,

> Judi

>

>

>

>

[Guest guest]

Hi,

I am new to the group. I was diagnosed with RA in August. At the

time my liver enzymes were high so I was started on Plaguenil 400

mg/day. At the time of the diagnosis I was taking 10 mg of

Predenison, down from 40 mg when I started having symptoms in June.

I was kept on the Prednisone.

Since then I have had to move, lost my job, and feel as if I was on

a runaway train!

Recently, I was hospitalized for one week for dehydration following

about 4 days of what I thought was a bad virus. I was diagnosed

with having hepatitis (non-viral), most probably Immune deficient

hepatitis.

I have since seen a Hepatologist who feels that this may have been

drug induced. However, I have had three other episoded of similar

symptoms in the past. He is doing more tests to rule out bilary

duct problems and will test my liver enzymes again.

In addition, I have developed a thrust in my mouth which the doctor

reports is due to the prednisone. I have been having dificulty

swallowing, breathing, and speaking and in December, I had to have

my esophagus dilated. My symptoms began again recently and the

hepatoogist believes that the thrust has entered my esophagus. I am

scheduled for another endoscopy.

In addition, while I was hospitalized, I was taken off of all meds

except the prednisone. The new doctors feel that RA may not be the

right diagnosis. I am now being sent to an infections disease

physician.

I have had chronic low grade temperatures, night sweates, and chills

thus the referral to an infections disease specialist.

However, since I have been removed from the Plaguenil, my joints are

beginning to get stiff again; especially my shoulders, fingers, and

hips. Interesting because all of this started with swollen knees in

May. I didn't think much of my swollen knees because I was doing

triathlones and running! Just thought it was a by product of my

activity. T

The reason that the doctors are questioning RA now is because my RA

Factor was 8, which I was told was negative and my ANA is negative.

However, I have not been able to get my records from the initial

doctor I saw before I moved. Can an ANA change because I thought

that I had a positive ANA?

I know that this is a lot of information. But after 8 months of

being sick and getting sicker; except that with the prednisone, I am

able to move. Prior to prednisone, I couldn't even lift a coffee

cup to my mouth or remove the covers from myself in the AM.

Dressing in the AM took my about an hour because every move was

difficult and clumbsy. Getting out of bed took about 10 minutes

because I could not lift my body but had to foll out of bed onto the

floor and make my way up from the floor to a standing position.

Any ideas or thoughts? I feel like a victim without a perpetrator.

At least when I thought I had RA, I knew what I was being victimized

by.

Thanks for any help.

Beth LaBar

[Guest guest]

:

You won't know what's wrong until you have all the tests done and you

speak with your doc. I understand how difficult it must be to wait

for that to be done. If it helps at all, I've had Pneumonia before

as well, and for some people it leaves scarring on your lungs. This

may be what is showing up on the x-rays. Just a thought. Again, you

won't know for sure until all the tests are completed.

Hang in there and take care,

--- In , " Climer " <climers4@a...>

wrote:

> I am so confused. Today my rheumy called me and told me my chest

xray shows

> I have Right upper lobe pneumonia and to go see my regular doctor.

I don't

> feel sick like that at all. I have had pneumonia before, and it

leaves a

> definite impression on you. Anyway, I go see my internist and he

feels also

> I don't have pneumonia, but he isn't sure what is showing on my

films. So of

> course, the bad thoughts start running thru your mind. So now I

have to go

> for a ct scan on Oct. 3. He thinks its just a shadow of something,

and I am

> praying hard he is right! He also had the results of the xrays of

my hands

> and feet that were taken, and my hands were fine, and my feet are

showing

> all sorts of osteo arthritic changes. Now my hands and wrists hurt

worse

> than my feet and the films look fine? I swear, the more tests I

have done,

> the more questions there seem to be. Do I have RA or not? If not,

what on

> earth could it be. From what I read, and what the doctor tells me,

I have

> all the symptoms, so why isn't something difinitive showing up???

>

> Anybody out there have any insight to what might be going on? Boy

would I

> love to hear some theories!!

>

>

>

>

>

>

>

[Guest guest]

Thanks . I am not too concerned about the pneumonia anymore. The

doctor said he thought it might be a shadow of something or like you said,

scarring from the last pneumonia, so I am starting to feel ok about that.

Its just the other stuff thats driving me batty! LOL!

I will just be so happy to find out definitely what is wrong. I hate not

knowing, and Lord knows....I'm not the most patient person in the world.

I will try to keep hanging

-- [ ] Re: confused

:

You won't know what's wrong until you have all the tests done and you

speak with your doc. I understand how difficult it must be to wait

for that to be done. If it helps at all, I've had Pneumonia before

as well, and for some people it leaves scarring on your lungs. This

may be what is showing up on the x-rays. Just a thought. Again, you

won't know for sure until all the tests are completed.

Hang in there and take care,

--->

>

>

>

>