Re: just a few questions

[Guest guest]

Christy,

Welcome to the group and no you havn't waited to long. There are

many families here who have waited to get treatment till around 1

year. Although the result wouldn't be seen as quickly as a baby who

is younger you should still se results.

If the Student Dr. has noticed it and notated it in her chart that

says something about the fact that the new Dr.s are aware of this

condition. I would suggest that you bring the info you can get off of

this site to your Ped. and tell her that you want to be refered to a

Pedi Nurologist. Let her know that you are not accepting the don't

worry it will take care of itself theory.

As for your husband mine also didn't want to see Bri in a helmet

even though he knew that she had a very misshappen head. Once we were

cleared of Cranio and he saw all of the info I had gathered on Plagio

& he saw what she could be facing down the road without treatment he

changed his tune.

Maybe you are a little bit more sensitive to your childrens health

because of your oldest daughter but if it helps you to see things

before they get to be a problem then I say it is a good thing. I know

it has been that way for me and I will not appologise for looking out

for my girls no matter what the outcome is and you shouldn't either.

Good luck and keep us posted,

April

Mommy to Bri and Mandy

> I just joined this group tonight. I was hoping that maybe I could

> find a few answers about my daughter's head shape. My daughter is

12

> months old. At her 4 month check-up a student doctor was with my

> daughter's pediatrician. He immediatley noticed that Brooklyn's

head

> was flat on one side and protuded on the other. He also made note

of

> the fact that her ears were uneven (I had noticed this before, but

> was told not to worry about it). When he brought in our regular

> doctor, she told me not to worry and that it would reshape on its

> own.

>

> Until tonight, I had never heard of this condition. I found it

> surfing on the net because, like every night, after Brooklyn's bath

I

> began to worry about her head shape again. Now I am very afraid

that

> this is what is wrong and that it is too late to correct it. Okay, I

> went through all of to get to my questions. Here they are:

>

> Have I waited to long for there to be treatment?

>

> What happens if there is no treatment?

>

> How do I get my pediatrician to take me seriously about this? I

feel

> silly every time I mention it. I feel like she thinks I am overly

> concerned with apperances.

>

> Has anyone ever had lack of support from their husband? Mine gets

> upset with me when I bring the subject of Brooklyn's head up. He

> says I am borrowing trouble just because our first daughter had

three

> holes in her heart at birth and that I can't accept that Brooklyn is

> healthy. What should I do?

>

> Sorry that was so long. Thanks for your patience!

> Christy Stout

[Guest guest]

We started treatment for our daughter at 12 mths,she was banded

at 13mths with a Doc band in Miami. We had a 50% improvement. One of

my many reasons for waiting was my husband realy dident want to do it

because he thought it was ok. My parents thought she was ok, a Dr I

used to work for also said she was ok. She wasent and I wish I had

started sooner because I would have had more time for maybe two

helmets. Her pead had being telling me to band her from 3mths. The

neurosurgeon said it was moderate. When she was cast and I saw the

plaster head it was so off, even then my husband dident think it was

that bad. After that I dident use his judgement anymore.

If you do want to treat with a band you need to be seeing a

specialist ASAP to get the scrip. You are nealy running out of time.

The head spaces for growth close up at 24mths and your child needs

the helmet on 4mths. The sooner the better because some children that

grow alot when they are young may not grow to much when the are

toddlers,and the helmet only works with new growth.

Some children have been banded later with terrific results. Go

to the plagio support web site or WWW.caps2000.org and you will get

alot of imfo.

Lorraine Maclenzie mom DOC grad

Plagiocephaly@y..., mrsstoutsclass@y... wrote:

> I just joined this group tonight. I was hoping that maybe I could

> find a few answers about my daughter's head shape. My daughter is

12

> months old. At her 4 month check-up a student doctor was with my

> daughter's pediatrician. He immediatley noticed that Brooklyn's

head

> was flat on one side and protuded on the other. He also made note

of

> the fact that her ears were uneven (I had noticed this before, but

> was told not to worry about it). When he brought in our regular

> doctor, she told me not to worry and that it would reshape on its

> own.

>

> Until tonight, I had never heard of this condition. I found it

> surfing on the net because, like every night, after Brooklyn's bath

I

> began to worry about her head shape again. Now I am very afraid

that

> this is what is wrong and that it is too late to correct it. Okay,

I

> went through all of to get to my questions. Here they are:

>

> Have I waited to long for there to be treatment?

>

> What happens if there is no treatment?

>

> How do I get my pediatrician to take me seriously about this? I

feel

> silly every time I mention it. I feel like she thinks I am overly

> concerned with apperances.

>

> Has anyone ever had lack of support from their husband? Mine gets

> upset with me when I bring the subject of Brooklyn's head up. He

> says I am borrowing trouble just because our first daughter had

three

> holes in her heart at birth and that I can't accept that Brooklyn

is

> healthy. What should I do?

>

> Sorry that was so long. Thanks for your patience!

> Christy Stout

[Guest guest]

,

I've read about a combined therapy. Immunotherapy and Xolair at the

same time. Seems that you can get to maintennance levels faster or

something like that. Maybe a possible treatment for you?

If my understanding is correct, Xolair can interfere with the skin

test. The reports seem to indicate that the many previous allergies

don't show up anymore after being on Xolair. But only after 6

months or so of being on Xolair.

I'm very interested to know if you have seen any improvement in your

allergy/sinus symptoms. And are the medications helping or not.

Homer

--- In , " heather " <heaven1975@y...>

wrote:

> after being on xolair for 16 months, i've reached the peak

benifits

> from it. i'm sitting here, just frustrated that i have not been

able

> to discontinue any meds (in fact, we added one last march). not

all

> are asthma related (some are sinus related, and one for GERD which

> effects the asthma), but all but one were hoped to be decreased or

> discontinued after xolair. (on advair 500, flovent 220,

singulair,

> semprex-D, biaxin, uniphyl, rhinocortAQ, astelin, xolair, pepcid

> plus albuterol PRN). granted, i haven't needed prednisone since

> thanksgiving (which is a biggie i realize, before xolair, i was on

a

> 3-5 week taper every 4-8 weeks). has anyone been able to decrease

> their maintainence meds? am i just overtired and therefore

> frustrated and whiney? i sat and talked with my dr at length on

> monday about this, and she really doesn't see any we can remove.

> once june comes (lower pollen levels) she agreed to try removing

> singulair. i don't think it does much anyway.

>

> my other question - my dr is in search of why, despite all the

> medications i'm still having some trouble. she's talking about

doing

> some food allergy testing in june, with the thought that maybe

> something i eat every day is causing me trouble. (the allergy

> testing will be the skin prick kind...RAST/bloodwork has never

been

> too accurate for me). does anyone know if xolair will mess up the

> test? i know you can't take any antihistamines within 48 hours.

>

> hope all is well. my husband and i have been busy doing serious

> renovations on a house we just bought. i've been wearing a mask

for

> the bulk of it, but even still, my lungs and sinuses are

> complaining. all the dusty work should be done by the weekend.

> have a great week

> heather

[Guest guest]

hi homer. thanks for your reply. the immunotherapy was a bust (prior to xolair)

mainly b/c after my first shot (extra diluted - 1 part per millionths or

something crazy like that) my tongue started to swell, along with my throat.

despite xolair, my dr is not willing to risk it again (although nothing serious

happened...i took lots of benedryl and things were great).

i'll have to look into the skin testing. i'm hoping xolair will not interfere

with the results, but i can't change it if it does.

as for the allergies, my husband says he definately sees an improvement from two

years ago (prior to xolair ) and even last year (when i was only on xolair 3-4

months). my sinuses are not totally related to allergies. i'm under frequent

care of an ENT and have had two surgeries for my sinuses. my daily treatment is

nasacort AQ (just changed from rhinocortAQ), astelin and daily biaxin 500mg (for

its anti-inflammatory effects). i assume the meds are helping.

heather

HomerSwei <homerswei@...> wrote:

,

I've read about a combined therapy. Immunotherapy and Xolair at the

same time. Seems that you can get to maintennance levels faster or

something like that. Maybe a possible treatment for you?

If my understanding is correct, Xolair can interfere with the skin

test. The reports seem to indicate that the many previous allergies

don't show up anymore after being on Xolair. But only after 6

months or so of being on Xolair.

I'm very interested to know if you have seen any improvement in your

allergy/sinus symptoms. And are the medications helping or not.

Homer

--- In , " heather " <heaven1975@y...>

wrote:

> after being on xolair for 16 months, i've reached the peak

benifits

> from it. i'm sitting here, just frustrated that i have not been

able

> to discontinue any meds (in fact, we added one last march). not

all

> are asthma related (some are sinus related, and one for GERD which

> effects the asthma), but all but one were hoped to be decreased or

> discontinued after xolair. (on advair 500, flovent 220,

singulair,

> semprex-D, biaxin, uniphyl, rhinocortAQ, astelin, xolair, pepcid

> plus albuterol PRN). granted, i haven't needed prednisone since

> thanksgiving (which is a biggie i realize, before xolair, i was on

a

> 3-5 week taper every 4-8 weeks). has anyone been able to decrease

> their maintainence meds? am i just overtired and therefore

> frustrated and whiney? i sat and talked with my dr at length on

> monday about this, and she really doesn't see any we can remove.

> once june comes (lower pollen levels) she agreed to try removing

> singulair. i don't think it does much anyway.

>

> my other question - my dr is in search of why, despite all the

> medications i'm still having some trouble. she's talking about

doing

> some food allergy testing in june, with the thought that maybe

> something i eat every day is causing me trouble. (the allergy

> testing will be the skin prick kind...RAST/bloodwork has never

been

> too accurate for me). does anyone know if xolair will mess up the

> test? i know you can't take any antihistamines within 48 hours.

>

> hope all is well. my husband and i have been busy doing serious

> renovations on a house we just bought. i've been wearing a mask

for

> the bulk of it, but even still, my lungs and sinuses are

> complaining. all the dusty work should be done by the weekend.

> have a great week

> heather

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

[Guest guest]

Dear :

If you're doing work on your house I don't care what kind of mask you use your

going to have trouble.

After 16 months I would think they could eliminate some medication. I dropped

the singulair because it did nothing. With your doctors permission try and

eliminate one at a time and see how it goes after pollen season but, than

ragweed season will start.

If we cannot eliminate some of the medication than what are we on Xolair for??

Kathy

heather <heaven1975@...> wrote:

after being on xolair for 16 months, i've reached the peak benifits

from it. i'm sitting here, just frustrated that i have not been able

to discontinue any meds (in fact, we added one last march). not all

are asthma related (some are sinus related, and one for GERD which

effects the asthma), but all but one were hoped to be decreased or

discontinued after xolair. (on advair 500, flovent 220, singulair,

semprex-D, biaxin, uniphyl, rhinocortAQ, astelin, xolair, pepcid

plus albuterol PRN). granted, i haven't needed prednisone since

thanksgiving (which is a biggie i realize, before xolair, i was on a

3-5 week taper every 4-8 weeks). has anyone been able to decrease

their maintainence meds? am i just overtired and therefore

frustrated and whiney? i sat and talked with my dr at length on

monday about this, and she really doesn't see any we can remove.

once june comes (lower pollen levels) she agreed to try removing

singulair. i don't think it does much anyway.

my other question - my dr is in search of why, despite all the

medications i'm still having some trouble. she's talking about doing

some food allergy testing in june, with the thought that maybe

something i eat every day is causing me trouble. (the allergy

testing will be the skin prick kind...RAST/bloodwork has never been

too accurate for me). does anyone know if xolair will mess up the

test? i know you can't take any antihistamines within 48 hours.

hope all is well. my husband and i have been busy doing serious

renovations on a house we just bought. i've been wearing a mask for

the bulk of it, but even still, my lungs and sinuses are

complaining. all the dusty work should be done by the weekend.

have a great week

heather

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

[Guest guest]

Hi heather,

I dunno about dropping maint meds. I think the pred

thing is so significant you need to focus on the

positive....I mean there are non-allergic triggers

that we all deal with on a daily basis and xolair

ain't gonna do nothin for those...

From my perspective, I just want off pred at this

point. Meh to the rest.

Am losing hair but did before with pred tapers. Menses

are always super low to non-existant.

--- kathy eisen <kathyh1942@...> wrote:

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

Dear :

If you're doing work on your house I don't care what

kind of mask you use your going to have trouble.

After 16 months I would think they could eliminate

some medication. I dropped the singulair because it

did nothing. With your doctors permission try and

eliminate one at a time and see how it goes after

pollen season but, than ragweed season will start.

If we cannot eliminate some of the medication than

what are we on Xolair for??

Kathy

heather <heaven1975@...> wrote:

after being on xolair for 16 months, i've reached the

peak benifits

from it. i'm sitting here, just frustrated that i have

not been able

to discontinue any meds (in fact, we added one last

march). not all

are asthma related (some are sinus related, and one

for GERD which

effects the asthma), but all but one were hoped to be

decreased or

discontinued after xolair. (on advair 500, flovent

220, singulair,

semprex-D, biaxin, uniphyl, rhinocortAQ, astelin,

xolair, pepcid

plus albuterol PRN). granted, i haven't needed

prednisone since

thanksgiving (which is a biggie i realize, before

xolair, i was on a

3-5 week taper every 4-8 weeks). has anyone been able

to decrease

their maintainence meds? am i just overtired and

therefore

frustrated and whiney? i sat and talked with my dr

at length on

monday about this, and she really doesn't see any we

can remove.

once june comes (lower pollen levels) she agreed to

try removing

singulair. i don't think it does much anyway.

my other question - my dr is in search of why, despite

all the

medications i'm still having some trouble. she's

talking about doing

some food allergy testing in june, with the thought

that maybe

something i eat every day is causing me trouble. (the

allergy

testing will be the skin prick kind...RAST/bloodwork

has never been

too accurate for me). does anyone know if xolair will

mess up the

test? i know you can't take any antihistamines within

48 hours.

hope all is well. my husband and i have been busy

doing serious

renovations on a house we just bought. i've been

wearing a mask for

the bulk of it, but even still, my lungs and sinuses

are

complaining. all the dusty work should be done by the

weekend.

have a great week

heather

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

[Guest guest]

hi kathy

thanks for your message. the house is a HUGE undertaking. i'm trying to play it

as safe as possible, but its impossible for me to take a " backseat " role in it.

its not my personality. i'm actually enjoying working on the house (mask or no

mask) and just roll with the consequences.

as for the meds, with the xolair, i am at least more stable. i was on the same

meds before xolair, and spent 4-6 weeks on prednisone every 8-12 weeks. at

least with the xolair, i'm more controlled in most circumstances. little things

don't send my lungs into a tizzy, or at least, it takes a lot more little

things to do that. my big hope was that i'd be able to drop some meds, in

addition to not needing prednisone anymore. i guess i need to be more thankful

for small favors.

looking at the big picture, i'd much rather take a million meds and have more

good days, than drop some meds and decrease my quality of life...

heather

kathy eisen <kathyh1942@...> wrote:

Dear :

If you're doing work on your house I don't care what kind of mask you use your

going to have trouble.

After 16 months I would think they could eliminate some medication. I dropped

the singulair because it did nothing. With your doctors permission try and

eliminate one at a time and see how it goes after pollen season but, than

ragweed season will start.

If we cannot eliminate some of the medication than what are we on Xolair for??

Kathy

heather <heaven1975@...> wrote:

after being on xolair for 16 months, i've reached the peak benifits

from it. i'm sitting here, just frustrated that i have not been able

to discontinue any meds (in fact, we added one last march). not all

are asthma related (some are sinus related, and one for GERD which

effects the asthma), but all but one were hoped to be decreased or

discontinued after xolair. (on advair 500, flovent 220, singulair,

semprex-D, biaxin, uniphyl, rhinocortAQ, astelin, xolair, pepcid

plus albuterol PRN). granted, i haven't needed prednisone since

thanksgiving (which is a biggie i realize, before xolair, i was on a

3-5 week taper every 4-8 weeks). has anyone been able to decrease

their maintainence meds? am i just overtired and therefore

frustrated and whiney? i sat and talked with my dr at length on

monday about this, and she really doesn't see any we can remove.

once june comes (lower pollen levels) she agreed to try removing

singulair. i don't think it does much anyway.

my other question - my dr is in search of why, despite all the

medications i'm still having some trouble. she's talking about doing

some food allergy testing in june, with the thought that maybe

something i eat every day is causing me trouble. (the allergy

testing will be the skin prick kind...RAST/bloodwork has never been

too accurate for me). does anyone know if xolair will mess up the

test? i know you can't take any antihistamines within 48 hours.

hope all is well. my husband and i have been busy doing serious

renovations on a house we just bought. i've been wearing a mask for

the bulk of it, but even still, my lungs and sinuses are

complaining. all the dusty work should be done by the weekend.

have a great week

heather

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

[Guest guest]

Before Xolair my asthma was very poorly controlled WITH all the

meds. I would have been happy to have well controlled asthma with

Xolair AND all the other meds. Fortunately for me, the Xolair has

worked well enough that I could drop some meds. The way I see it,

we are all on Xolair to try to get our quality of life back,

regardless of what additional meds we may have to continue to take

to maintain a reasonable quality of life.

Addy

> after being on xolair for 16 months, i've reached the peak

benifits

> from it. i'm sitting here, just frustrated that i have not been

able

> to discontinue any meds (in fact, we added one last march). not

all

> are asthma related (some are sinus related, and one for GERD which

> effects the asthma), but all but one were hoped to be decreased or

> discontinued after xolair. (on advair 500, flovent 220,

singulair,

> semprex-D, biaxin, uniphyl, rhinocortAQ, astelin, xolair, pepcid

> plus albuterol PRN). granted, i haven't needed prednisone since

> thanksgiving (which is a biggie i realize, before xolair, i was on

a

> 3-5 week taper every 4-8 weeks). has anyone been able to decrease

> their maintainence meds? am i just overtired and therefore

> frustrated and whiney? i sat and talked with my dr at length on

> monday about this, and she really doesn't see any we can remove.

> once june comes (lower pollen levels) she agreed to try removing

> singulair. i don't think it does much anyway.

>

> my other question - my dr is in search of why, despite all the

> medications i'm still having some trouble. she's talking about

doing

> some food allergy testing in june, with the thought that maybe

> something i eat every day is causing me trouble. (the allergy

> testing will be the skin prick kind...RAST/bloodwork has never

been

> too accurate for me). does anyone know if xolair will mess up the

> test? i know you can't take any antihistamines within 48 hours.

>

> hope all is well. my husband and i have been busy doing serious

> renovations on a house we just bought. i've been wearing a mask

for

> the bulk of it, but even still, my lungs and sinuses are

> complaining. all the dusty work should be done by the weekend.

> have a great week

> heather

>

>

>

>

>

>

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

>

[Guest guest]

Hi,,

That was a very informative intro! Until I read further I was

thinking you may have Caudia Equina. However,The MRI says other

things.

Have you tried using a specialized cusion that releives pressure on

the tailbone while sitting? They sometimes help. You might get

some helpful ideas from Physical Therapy- those folks can show you

how to do things that releive/ease the pain and cramps, plus help

you check and adjust your posture as neded to combat your problem.

Then, you need to discipline yourself to do all those things, every

day!

You may have to think 'multiple treatments' instead of trying to

find a magic pill that takes away the pain. Those pills are few and

far between.

Disc problems are very painful. Until you get that pain under

control you may want to 'unload' your spine a few times a day to

give those herniations a chance to heal. Heat pads often feel good,

but cold pacs do a better job of handling the inflamation.

That hand numbness sounds like you may also have a problem in the C-

spine.

I'm not a doc- just an old spiney sharing hat I can think of that

might help you.

You might note where your pain is, how severe it is, things that

make it worse/better to share with th pain doc. You also want to

find out what all the pain doc offers for treatment. Some of these

guys are surgeons and only offer surgery, ith no follow-up for post-

surgical pain. Some are anestheologists and are basically neeedle

jockies. Some are neurologists and push all kiinds of pills. You

really want someone who can and will do needles and pills and Rx PT,

they should also be very ready to refer you to other specialists as

needed- there is a time when surgery is indicated! (basically when

body function or nobility are threatened)

I hope this helps a bit. Good luck at the pain clinic.

God bless you,

Moderator, Chronic_Pain_Assistance

Cramer said, " I'm not a fool. " Wolf nodded again. " We all feel

like that occasionally. The poison of conceit. It's all right if

you keep an antidote handy. "

Rex Stout

>

> Hi everyone. I am so sorry for anyone who has to live their lives

> with chronic pain. Heres a little bit about me. I am 22 years old

> with a 7 month old bouncing ball of energy . About my 5th month of

> pregnancy, while I was still Active in the Military, my tailbone

hurt

> sooooo bad i could rarely sit comfortably. My obstetrician said it

> was the babies head on my pelvic region. I am sure that just

> intensified other underlying factors. My back has hurt always,

> sometimes worse than others, since a horse riding accident when I

was

> 18. Well after my son was born I waited and waited for the pain to

go

> away, with no avail I might add. Recently a MRI of my coccyx and

> lower lumbar concluded L1L2 L4L5 disc herniation with desiccation.

On

> my tailbone I also have a 1.2 centimeter Tarlov cyst. My symtoms

of

> everyday life include hand and feet numbess and burning, extreme

> constant pain in my tailbone, sometimes it feels like my sacral

> region is going to snap in half, lower to middle back pain and

> stiffness. The pain is worse somedays but mostly constant. Sorry

for

> all the info...hopefully someone knows something and has

experience

> to share. I am thinking about dropping out of college bc of the

pain.

> I cannot enjoy my son as I deserve. Fortunately I am a stay at

home

> mom, and take about 4-5-6 hydrocodone a day and 3 voltaren. My pcp

> told me to take 2 a day. I would be in alot of pain sitting in

class

> for 9 hours taking only 2 hydrocodone which doesnt seem to

alleviate

> the pain at all. How come doctors think medicine will work after

you

> describe your in excrutiating pain? Well tuesday I am going to see

my

> first pain management doctor. What is the intitial treatment for

my

> condition. I am against chiropractors. And since not being in the

> military I also have crappy insurance. How do I go about telling

my

> Pain Dr the medicine isnt working. I dont want to come off as a

> problem patient or drug seeker. I would ultimately like pain free

> days...but adequate relief until that time comes..I would ideally

> want a longer lasting and better releiving medications. Any

answers

> will be appreciated. Now you all know a little about me. Hope to

hear

> from you soon. Hit me up on messenger at sexymopimp...thanks

> everyone for your time

>