Update

[Guest guest]

,

Thanks for the update on Tucker. I'm glad that you will not have to deal with a

second band. Good luck with the lawyer - I'll keep my fingers crossed.

Marci

[Guest guest]

-

Good luck with your insurance battle! And I thought we had been

battling this for a long time!

Tucker is the only plagio baby your dr has seen? I would think with

the Back to Sleep campaign, she would see them frequently. My ped

says she has had up to 6 patients in bands at the same time.

We saw our ped last week and I asked her about the positioning of

where you felt the soft spots and she said as you ped did about it

not being soft spots, but probably suture lines. There are 5 suture

lines, not 5 soft spots.

At least you don't have to get another band and Tucker is continuing

to round out on his own!

Our friends son started speech with EI at 2 yo. He is doing great

and talking up a storm now at 3 yo!

Fingers and toes crossed you will get good news from the atty

tomorrow!

Dane's mom DOC Grad

[Guest guest]

i better clarify a bit..when tucker was banded he was seeing a pediatric dr..but after banding we switched to a dif dr because the ped became a jerk..so we now have a family dr..she has never seen a plagio kid...we are a small town of 2500 so maybe that has something to do about it..however..she always askes me questions and stuff like that..and now she has even gone the to madison ct clinic to talk to them about things she should watch for and ect...sooo..thats good news..the clinic we went to for the doc band had lots of banded babies tho..1 was only 2 months old..that was the cutest little helmet i've ever seen!

brenda

-- Re: update

-Good luck with your insurance battle! And I thought we had been battling this for a long time! Tucker is the only plagio baby your dr has seen? I would think with the Back to Sleep campaign, she would see them frequently. My ped says she has had up to 6 patients in bands at the same time. We saw our ped last week and I asked her about the positioning of where you felt the soft spots and she said as you ped did about it not being soft spots, but probably suture lines. There are 5 suture lines, not 5 soft spots. At least you don't have to get another band and Tucker is continuing to round out on his own! Our friends son started speech with EI at 2 yo. He is doing great and talking up a storm now at 3 yo! Fingers and toes crossed you will get good news from the atty tomorrow!Dane's mom DOC GradFor more plagio info

[Guest guest]

Hi . It¹s good to hear that working is no problem and that you are

able to enjoy life. I hope your increase in meds allows you to feel even

better. Now that is on your case to get your eye appointment, I have

no doubt that you will be getting it done LOL!

Have a great weekend.

a

> Hi all,

> I haven't posted in awhile so I thought I give you an update on how things are

> going. I saw my dr yesturday (Thursday). He has upped my Planquenil to 2

> times per day. He had me reduce it for the last 6 months and I am doing

> worse. I was asked to rate my pain - I told them about a 5. He told me that

> was better than last time, however, I am having more problems and he is

> concerned that there may be some damage going on. He had me get a series of

> x-rays; both feet, both hands and my right hip. I will know next week if

> there is any change from the last set of x-rays. I also need to get my eyes

> checked since I am on Planquenil. I keep forgetting to make an appointment.

> Someone want to take on the job of reminding me to do this until I actually do

> it???? I have so many things going on that I keep forgetting to do this and

> it is important that I get this done.

>

> Things are going well otherwise. I am able to keep doing the things I enjoy

> and I don't have any problems working - it helps that the teacher I work with

> also has RA so he understands when I'm having a bad day.

>

> Hope you all have a wonderful weekend.

>

> in Minnesota

> linda@...

>

>

>

[Guest guest]

Hi ka,

We also had a few adjustments the first couple of weeks for the DOC band to fit just right- they usually tell you that they should fade within an hour, but like you, after 30 minutes, I would let CT know about certain areas to see if it should be a concern, and to make sure that it wasn't a comfort issue either (had the ear area trimmed because I felt it was rubbing too much- so keep an eye out for things that concern you about the fit in general- if it doesn't compromise treatment, CT will probably accomodate you). My son also had very noticeable facial asymmetry, and the DOC band corrected that in about the 2nd month he wore it. Our biggest indicator was to set him in front of a mirror, it was clearly working when we had a hard time spotting anything- and I am happy to say his ears are aligned and no more asymmetry. Good luck with your new journey and please keep us posted on little .

' Mom

[Guest guest]

Hi ka:

's in the Ballert Helmet right? Most orthotists say as long as

the red spots fade w/i one hour they are ok. You mention 's

don't fade w/i 30 mins, but they usually give em an hour to

completely fade. But it's best to have them looked at by the

orthotist.

Yes, irritation and trips back to the orthotist are common in the

beginning of treatment. It takes some time to get that perfect fit,

but you'll get it soon!

The bands DOOOOO help with assymetries. While the band " pushes " the

head back into it's normal round shape, the rounding will help push

out other assymetries, like the ears, etc.. Often assymetries are

the most difficult to correct, but they are certainly correctable!

Let us know what the orthotist says.

Debbie Abby's mom DOCGrad

GR MI

> Hi Everyone,

> I am just writing an update on (7 months today). He has had

the

> helmet for about 10 days but only wore it for about 7 of those

days.

> He seems to be tolerating it well. The only problem is that is

was

> giving him red marks that wouldn't go away within 30 minutes. So we

> have an appointment with the orthotist today. I didn't like not

> putting him in it but I couldn't because of the irritation. Is that

> typical at first? How do you all handle that when it happens

> (especially on a weekend)? I also have another question about the

> facial assymetry. Does the helmet actually help that? I was told by

> the cranio-facio specialist that it doesn't. But I figured you all

> would know better. Hope everyone is doing well. Thanks for all

of

> your support.

> ka mom to

> Michigan

[Guest guest]

>I also have another question about the

facial assymetry. Does the helmet actually help that? I was told by

the cranio-facio specialist that it doesn't.<

Hi ka,

I asked my ortho at CT the very same question. She told me yes, the

band will help correct asymmetry! It is common to have to have the

band adjust when you first get it. Please let us know what your ortho

says today.

Good luck,

> Hi Everyone,

> I am just writing an update on (7 months today). He has had

the

> helmet for about 10 days but only wore it for about 7 of those

days.

> He seems to be tolerating it well. The only problem is that is

was

> giving him red marks that wouldn't go away within 30 minutes. So we

> have an appointment with the orthotist today. I didn't like not

> putting him in it but I couldn't because of the irritation. Is that

> typical at first? How do you all handle that when it happens

> (especially on a weekend)? I also have another question about the

> facial assymetry. Does the helmet actually help that? I was told by

> the cranio-facio specialist that it doesn't. But I figured you all

> would know better. Hope everyone is doing well. Thanks for all

of

> your support.

> ka mom to

> Michigan

[Guest guest]

ka,

You are right to keep the helmet off if the red spots don't fade completely in

30 minutes. If this the case then you definitely need to get in to see the ortho

for an adjustment. Sometimes it takes a week of two of making several

adjustments to get the fit just right so try not to be discourage, but stay on

top of it!

My daughter wore a helmet and it did help her facial assymetry and her

misalignment.

Marci (mom to )

Oklahoma

[Guest guest]

ka-

It is common to have a couple of adjustments the first week to get

the perfect fit. We left the band off only when the red spots

lasted over an hour.

My son had significant facial and ear asymmetry. The band took care

of it and the left side of his face looks like the right today.

Most people say the asymmetries are the last to correct, but I have

to admit that with Dane they corrected before the flat spot started

filling in. He was banded from 5-8 months.

Dane's mom DOC Grad

[Guest guest]

Hi ka,

I think having red spots in the beginning of treatment is relatively

normal. It may take a week or so to work out the kinks and get the

proper fitting. How long does it take for the marks to fade? I hope

the adjustment you got today has made all the difference.

My daughter had facial and ear assymetry due to her plagio. She wore

her STARband for four months, and the assymetry was corrected. I've

always heard that ear alignment is one of the last things to fall in

line, but it will happen!

Good luck, and keep us posted! I'm keeping my fingers crossed that

its smooth sailing from here on out for you!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hi Everyone,

> I am just writing an update on (7 months today). He has had

the

> helmet for about 10 days but only wore it for about 7 of those

days.

> He seems to be tolerating it well. The only problem is that is

was

> giving him red marks that wouldn't go away within 30 minutes. So we

> have an appointment with the orthotist today. I didn't like not

> putting him in it but I couldn't because of the irritation. Is that

> typical at first? How do you all handle that when it happens

> (especially on a weekend)? I also have another question about the

> facial assymetry. Does the helmet actually help that? I was told by

> the cranio-facio specialist that it doesn't. But I figured you all

> would know better. Hope everyone is doing well. Thanks for all

of

> your support.

> ka mom to

> Michigan

[Guest guest]

<PRE>hi tess, i got out yesterday a bit too. i had to borrow my sons car. the

day

before i went through all the stacks of papers from my disability and tried

to put them back in order. things were everywhere pulling stuff out for

meetings for public aid and energy assistance. plus on the phone trying to

find a new atty. i have an appt next wednesday, so keep your fingers crossed.

i was in so much pain last night. i haven't felt like that in a long time. i

have no idea how i could sit at a desk and work like that. i just hurt all

down my left side. my arms were sore and having spasms from going through all

the paperwork. i hurt my left knee getting into my sons car, then my feet and

ankles were swollen and sore. i had to take my syringes back to the pharmacy.

both kinds were wrong. they had to special order them and i hope they will

get them by 2pm today. i am due to take my mtx tonight. (i was doing on tues,

then switched last week due to thanksgiving. maybe thats why i hurt so bad.)

welcome to the newbies. i've been busy too tired to introduce myself, but i

will get there soon. welcome!!! another yeast infection (what else is

new!!) i am going to call today and set up my 3 mo pap. also going to ask him

to write me a larger dose. he gives me a 3 day cream. seems i have to buy 3

at $15 each. every month. i can't afford it anymore. although with the store

bought like i have been using lately, i was awakened 3 times scratching. so

that is not doing it either. my parents are supposed to leave next week to

come home for x-mas and their 12 year old poodle with congestive heart

failure is having a really rough time. so i have been preparing myself for

the worst there. that is about all that has been going on here. 20 days

until x-mas. my check comes on x-mas day. we usually celebrate x-mas eve. but

my sisters step kids are leaving on x-mas eve, so they are talking about

doing it earlier. going to be baking for x-mas, and my mixer, the cord must

have a short in it. i should ask santa for some good luck for x-mas. i have

been a good girl!!!! kathy in il

[Guest guest]

,

Good luck in the new apartment!!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> hi all..well we moved to our new apt..its nice..i'lll give you more

info

> when we get settled...but for now could someone please switch me to

daily

> digest..

>

> thanks

>

> brenda

> ruby1@g...

>

>

> ps..my email addy will soon be changing..but will let you know..

[Guest guest]

tess i know how you feel. i think that remicade has weakened your immune

sysytem and it will take a little longer to get through it. i know i was sick

for quite awhile both on enbrel and remicade and never thought i'd get better

either. 2 years later, i am starting a job tomorrow!! (although i won't tell

you of the pain and dizzyiness i had over the weekend along with sore throat

and runny nose. nope...not me!!!) kathy in il i think i can, i

think i can

[Guest guest]

Tess, your family get-together sounded like a special time indeed. I'm

so glad that you could go and be with them even though you are feeling

so sick. That wedding is coming up fast!

Your current state of health has me worried. That is an awfully long

time for a fever, especially when you still have chills and a cough. How

high and low does the fever go? Any idea? Just curious. Which lymph

nodes are enlarged?

I'm glad your rheumatologist is going to speak with your PCP. Maybe the

test results will give them more to go on. Have you run this situation

by your ob/gyn? I think I would.

[ ] update

> Hi...the time with my family was wonderful. My daughter, Genevieve,

who

> is getting marrried July 12, asked my dad (her grandpa) to walk her

down

> the aisle...she had written a very tender letter to her grandpa &

> grandma and read it while we were there. My Dad, who is 84, cried...

>

> I slept when we got home. This morning my rheumy's nurse called to

see

> how I am. Fever, chills, fatgue-weakness, occasional dry cough. My

> rheumy wants to talk with my PCP when she gets back Wednesday. I see

> her then, and will get the results of the last xrays and blood tests.

>

> Discouragement is around...trying to keep my eyes looking up. I have

no

> idea how we'll treat RA, but til this 'whatever' is over, I guess

> there's no point worrying about it.

>

> My 3 girls are going " bridesmaid " dress shopping this afternoon...that

> makes me very happy.

>

> I've been sick a month now. Do you all just think it's a stubborn bug

> and I just need to be more patient? I'm just really so tired.

>

> Love...

>

> Tess

[Guest guest]

i'm sorry you and em are so sick, hope you feel better soon. it's hard when

your immune system is so low. hang in there. kathy in il

[Guest guest]

(((((((((((((((((((((((((((((((Tess)))))))))))))))))))))))))))))

I'm so sorry that this continues to " hang on " . I think it's a good idea

that you see your rheumy, and get a second point of view on this. Maybe it

is related to the arthritis. It could certainly be exacerbated by the

Remicade, at any rate.

As for the depression, I think anyone would have periods of depression after

being so sick for over a month! Hang in there, kiddo.

I'm sending you lots of love and a virtual bowl of chicken soup

((((((((_________))))))))),

Carol

[ ] update

Hi All...Saw my PCP...xray looks good, no abnormal lab results...she is

stumped. She wants me to see my rheumy to rule out anything related to

RA, PsA, etc. or the meds I'm on for those. She did take a urine sample

today.

From about an hour after I got home, I began getting sick from both

ends, sorry, and from then til around 11pm nothing stayed down, not even

water or pop. I am feeling better and able to drink without heaving,

but my temp is almost 102, and I haven't been able to sleep. Poor Em

came home from work yesterday with the same bug, though she never got a

fever.

If my rheumy doesn't figure out what's up, she said th next step will be

a CT of the lung, as that's where it seems the problem started.

Please keep me in your prayers. My PCP asked me several times if I was

getting depressed over this, and I told her I have moments or periods of

depression, but I am not " in " a full-blown depression. I just want to

be ok.

Love to All....

Tess

[Guest guest]

Boo!! Tess, that is not an improvement. I am so sorry to hear the

latest. I hope the symptoms calm down soon. Please give us an update

later today if you are feeling up to it.

You are lucky to have a PCP who cares and is trying hard to help you. I

like the CT scan.

When can you see your rheumatologist? I hope he will take you in right

away.

Sorry to ask all of these questions, but I have one more: When you wrote

that poem " Night Sweats, " were you actually having them?

[ ] update

> Hi All...Saw my PCP...xray looks good, no abnormal lab results...she

is

> stumped. She wants me to see my rheumy to rule out anything related

to

> RA, PsA, etc. or the meds I'm on for those. She did take a urine

sample

> today.

>

> From about an hour after I got home, I began getting sick from both

> ends, sorry, and from then til around 11pm nothing stayed down, not

even

> water or pop. I am feeling better and able to drink without heaving,

> but my temp is almost 102, and I haven't been able to sleep. Poor Em

> came home from work yesterday with the same bug, though she never got

a

> fever.

>

> If my rheumy doesn't figure out what's up, she said th next step will

be

> a CT of the lung, as that's where it seems the problem started.

>

> Please keep me in your prayers. My PCP asked me several times if I

was

> getting depressed over this, and I told her I have moments or periods

of

> depression, but I am not " in " a full-blown depression. I just want to

> be ok.

>

> Love to All....

>

> Tess

[Guest guest]

Tess: I had to go back and read what you had to say...the high spin

CT shows alot more than a regular Xray...it doesnt take that

long....with pulmonary fibrosis it will show on a CT, but usually not

on Xray...it appears or so they tell me to have a groung glass look

at the base of the lungs.....mine was just starting to show when they

did the scan last year....are they going to have you do a PFT also as

they usually have to combine the two to confirm PF....and to see how

badly it is effecting your lung function....I bet you are saying shut

up already....anway just worried.......hugs to you....the okie

> Hi All...my rheumy talked with my pcp, and they both feel I should

have

> a CT scan of my lungs now. I think I am a little better, but they

don't

> feel I'm better enough. I have a low-grade fever, occasional

dizziness

> & dry cough, and much fatigue. I'm still on 3 inhalers. I have

rarely

> used any inhaler in years til the pneumonia etc. My xray looked

> good...what is a CT scan able to see that xrays cannot?

>

> Love to all....

>

> Tess

[Guest guest]

Hi Tess,

I am sorry to hear your are still enduring so much. My love and

prayers go out to you.

Having had numerous CT scans they provide a 3d image of the area, as

opposed to an X-Ray that produces 2. It will give your doctors a

better view and hopefully an better idea regarding what is happening

to you.

Take care.

Love and hugs,

Alan

> Hi All...my rheumy talked with my pcp, and they both feel I should

have

> a CT scan of my lungs now. I think I am a little better, but they

don't

> feel I'm better enough. I have a low-grade fever, occasional

dizziness

> & dry cough, and much fatigue. I'm still on 3 inhalers. I have

rarely

> used any inhaler in years til the pneumonia etc. My xray looked

> good...what is a CT scan able to see that xrays cannot?

>

> Love to all....

>

> Tess

[Guest guest]

Why not start the " fever of unknown origin " investigation now? This has

been going on since February 11!!!!!

Do you have a history of headaches? Or are the " migraine-like " attacks

something totally new?

It's good that your CT was normal, Tess, but sorry that you aren't

closer to an explanation.

Impatiently,

[ ] update

> Hi...my CT was normal. My Dr's are scratching their heads. My pcp

said

> we'll just keep watching things, and if this doesn't resolve in

another

> month or so, they will treat it as " fever of unknown origin " and

proceed

> with the protocol for addressing that.

>

> I still have chills, fever, dizziness, huge fatigue and occasional dry

> cough. I am very grateful that nothing bad has shown up, but I am so

> frustrated with having to sleep several times a day, not having the

> energy to do many things, and the blasted chills & fever. I've had

some

> migraine-like headaches as well, but I haven't had them as long.

>

> Thank you all for your love & prayers.

>

> Tess

[Guest guest]

What a puzzle you are Tess. I am very relieved that your CT was normal. I

wish you had answers instead of more questions.

fever of unknown origin:

http://www.kcom.edu/faculty/chamberlain/Website/lectures/lecture/FUO.htm

http://www.fpnotebook.com/ID44.htm

http://www.emedicine.com/MED/topic785.htm

I hope whatever treatment they decide on will make you feel better.

a

> Hi...my CT was normal. My Dr's are scratching their heads. My pcp said

> we'll just keep watching things, and if this doesn't resolve in another

> month or so, they will treat it as " fever of unknown origin " and proceed

> with the protocol for addressing that.

>

> I still have chills, fever, dizziness, huge fatigue and occasional dry

> cough. I am very grateful that nothing bad has shown up, but I am so

> frustrated with having to sleep several times a day, not having the

> energy to do many things, and the blasted chills & fever. I've had some

> migraine-like headaches as well, but I haven't had them as long.

>

> Thank you all for your love & prayers.

>

> Tess

>

>

>

>

[Guest guest]

Hi ...my pcp says they usually start the " fever of unknown origin "

testing if the fever goes on 2-3 months after an obvious cause of fever,

such as the bacterial pneumonia, is gone. Beats me...I have never heard

of this before. I see both my pcp & rheumy next week.

Love You...

Tess

[Guest guest]

PS ~ I have had only a few killer migraines in my life...these headaches

feel similar but milder, and I am not as sensitive to light as with the

migraines.

Hugs...

Me

[Guest guest]

Dear a...wow, a lot of information in those articles! Thank you so

much. I have asked a friend of mine who has a printer to send these to

me.

Maybe I'm just in a " autoimmune potpourri " flare! One aunt has

polymyalgia rheumatica, another RA, cousin with lupus and cousin with

mixed connective tissue disese, Mom with gout. The only other symptom I

don't think I've mentioned as it only occurs occasionally these past 2

months or so is a pinkish rash on my face.

The hardest part of all this is the fatigue from

h-e-double-hockey-sticks. I get SO tired I HAVE to sleep at least twice

during the day, plus at night. I have had severe fatigue with RA flares

before, but this fatigue is more " I HAVE TO SLEEP " than " I have to

rest. " I don't like the chills or dizziness or fever or headaches, but

I HATE this weird tiredness.

I'm sorry to go on so much about this. I know I am frustrated and angry

as I was making such good strides 2 months ago, and now it's like

walking through quicksand every day.

Much Love....

Tess

[Guest guest]

I'm glad at least your CT was normal, yet know how frustrating it is

not to get answers. It's like we really don't want something to be

seriously wrong, but if there's something that can be fixed please

find it. I've been in your shoes and have great empathy.

Have they ruled out RA as the source of your fevers and chills?

Perhaps the extreme fatigue is your body recuperating from the

extended pneumonia, not to mention fevers tend to make you need to

sleep more. Your poor body has been through so much that it has to be

totally exhausted trying to heal.

I do hope they get to the bottom of everything and you will see

improvement soon.

Elaine

> Hi...my CT was normal. My Dr's are scratching their heads. My pcp

said

> we'll just keep watching things, and if this doesn't resolve in

another

> month or so, they will treat it as " fever of unknown origin " and

proceed

> with the protocol for addressing that.

>

> I still have chills, fever, dizziness, huge fatigue and occasional

dry

> cough. I am very grateful that nothing bad has shown up, but I am

so

> frustrated with having to sleep several times a day, not having the

> energy to do many things, and the blasted chills & fever. I've had

some

> migraine-like headaches as well, but I haven't had them as long.

>

> Thank you all for your love & prayers.

>

> Tess