Jenna

[Guest guest]

Thanks so much for all of your suggestions. Like I mentioned in

another post I can't begin to tell you how helpful it is to speak to

people who know what they are talking about.

I am feeling very fortunate to have the dr. that I do given all the

stories of incompetence I have been reading. I was thinking about

switching to a dr in Austin because my current dr is in Houston and

it is hard to make time to see him given school and the 3 hour

drive. I think I will go ahead and stick with him, he knows what he

is talking about.

Hot flashes are something I have grown accustomed to now. My mom and

I have something in common now. My dad absolutely loves having the

two of us in the same room complaining about how hot it is. Our

electric bills are through the roof when I am home. The other

absoluttely annoying thing I have struggled a lot with are muscle

cramps and spasms. I am constantly getting muscle cramps in my

calves, forearms, feet, and back. I started taking vitamin

supplements that have high doses of potassium and eating a lot more

bananas. It helped for a while, but they are back again. Has anyone

else had that experience?

Jenna

>

>

> Dear Jenna, I think everyone on prednisone struggles with weight

at one

> level or another. Regarding excersize, remember this-the more you

do, the

> better you feel, the more energy you have, then since you have

energy, you

> can do more, and feel better, and have more energy-so just start

off slow,

> doing something, walk for 10 minutes if that's all you can do, but

do it

> EVERY SINGLE DAY, and soon, you will find you can increase it.

You've got

> to take control, be informed, be responsible for your own health as

much as

> possible. I'm sure this is not new information for you, I just

want you to

> FEEL ENCOURAGED, don't feel like the LONE RANGER, and take care of

yourself.

>

> Personally, I'm having a problem with sweats & hot flashes-can you

say AIH

> and menopause in the same breath! I have an appointment tomorrow,

so I'll

> mention it. Take care. Cathie

>

> _________________________________________________________________

> Join the world's largest e-mail service with MSN Hotmail.

> http://www.hotmail.com

[Guest guest]

Jenna, try quinine, you can drink the water or ger a prescription for

tablets. Works wonders,

Patty

[ ] Re: Jenna

Thanks so much for all of your suggestions. Like I mentioned in

another post I can't begin to tell you how helpful it is to speak to

people who know what they are talking about.

I am feeling very fortunate to have the dr. that I do given all the

stories of incompetence I have been reading. I was thinking about

switching to a dr in Austin because my current dr is in Houston and

it is hard to make time to see him given school and the 3 hour

drive. I think I will go ahead and stick with him, he knows what he

is talking about.

Hot flashes are something I have grown accustomed to now. My mom and

I have something in common now. My dad absolutely loves having the

two of us in the same room complaining about how hot it is. Our

electric bills are through the roof when I am home. The other

absoluttely annoying thing I have struggled a lot with are muscle

cramps and spasms. I am constantly getting muscle cramps in my

calves, forearms, feet, and back. I started taking vitamin

supplements that have high doses of potassium and eating a lot more

bananas. It helped for a while, but they are back again. Has anyone

else had that experience?

Jenna

>

>

> Dear Jenna, I think everyone on prednisone struggles with weight

at one

> level or another. Regarding excersize, remember this-the more you

do, the

> better you feel, the more energy you have, then since you have

energy, you

> can do more, and feel better, and have more energy-so just start

off slow,

> doing something, walk for 10 minutes if that's all you can do, but

do it

> EVERY SINGLE DAY, and soon, you will find you can increase it.

You've got

> to take control, be informed, be responsible for your own health as

much as

> possible. I'm sure this is not new information for you, I just

want you to

> FEEL ENCOURAGED, don't feel like the LONE RANGER, and take care of

yourself.

>

> Personally, I'm having a problem with sweats & hot flashes-can you

say AIH

> and menopause in the same breath! I have an appointment tomorrow,

so I'll

> mention it. Take care. Cathie

>

> _________________________________________________________________

> Join the world's largest e-mail service with MSN Hotmail.

> http://www.hotmail.com

[Guest guest]

Dear Cathie,

Very wise counsel, I like what you shared with Jenna, especially not being a "lone ranger." It's so easy to do that as women, to try and be superwoman type mentality.

Love, Ruth P.S. Are you Cathie from Bend, Oregon? I am just trying to keep everyone straight here.

c reece <maplecolors@...> wrote: Dear Jenna, I think everyone on prednisone struggles with weight at one level or another. Regarding excersize, remember this-the more you do, the better you feel, the more energy you have, then since you have energy, you can do more, and feel better, and have more energy-so just start off slow, doing something, walk for 10 minutes if that's all you can do, but do it EVERY SINGLE DAY, and soon, you will find you can increase it. You've got to take control, be informed, be responsible for your own health as much as possible. I'm sure this is not new information for you, I just want you to FEEL ENCOURAGED, don't feel like the LONE RANGER, and take care of yourself.Personally, I'm having a problem with sweats & hot flashes-can you say AIH and menopause in the same breath! I have an appointment tomorrow, so I'll mention it. Take care. Cathie_________________________________________________________________Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com

[Guest guest]

Hi Ruth! I live in San . Cathie

>From: " hrby97111@... " <hrby97111@...>

>Reply-

>

>Subject: Re: [ ] Jenna

>Date: Sun, 14 Jul 2002 22:51:31 -0700 (PDT)

>

>

> Dear Cathie,

> Very wise counsel, I like what you shared with Jenna, especially not

>being a " lone ranger. " It's so easy to do that as women, to try and be

>superwoman type mentality.

>Love, Ruth P.S. Are you Cathie from Bend, Oregon? I am just trying to

>keep everyone straight here.

> c reece <maplecolors@...> wrote:

>

>Dear Jenna, I think everyone on prednisone struggles with weight at one

>level or another. Regarding excersize, remember this-the more you do, the

>better you feel, the more energy you have, then since you have energy, you

>can do more, and feel better, and have more energy-so just start off slow,

>doing something, walk for 10 minutes if that's all you can do, but do it

>EVERY SINGLE DAY, and soon, you will find you can increase it. You've got

>to take control, be informed, be responsible for your own health as much as

>possible. I'm sure this is not new information for you, I just want you to

>FEEL ENCOURAGED, don't feel like the LONE RANGER, and take care of

>yourself.

>

>Personally, I'm having a problem with sweats & hot flashes-can you say AIH

>and menopause in the same breath! I have an appointment tomorrow, so I'll

>mention it. Take care. Cathie

>

>_________________________________________________________________

>Join the world’s largest e-mail service with MSN Hotmail.

>http://www.hotmail.com

>

>

>

>

[Guest guest]

Hi Lynn,

Prayers for Jenna that she begins to respond to the antibiotics. Thinking of

you.

((((((HUGS)))))))))))

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Thank You everyone for your prayers and good wishes.

Jenna is not doing well. Her chest x-ray today showed more areas of

pneumonia. She is on 100% Oxygen with a tent mask, which she is

constantly pulling off.

Of course Mom or Dad have to stay to fight and keep the O2 on and

tubes in. Still in Peds intermediate unit in Hershey.

Thanks,

Lynn Grabko

> lynn we went thru five intense days at childrens hospital with

montyman a few

> years ago...he came out of surgery ripping all the tubes out and

had ALL the

> dr.s and workers jumping around....it is so hard on them and i

believe harder

> even for US, who want so badly for them to be happy and

comfy......we

> continue to stand with you all in prayer....

> Donna, Montyman's mom

[Guest guest]

will keep my prayers a coming, shawna

Re: jenna

> Thank You everyone for your prayers and good wishes.

> Jenna is not doing well. Her chest x-ray today showed more areas of

> pneumonia. She is on 100% Oxygen with a tent mask, which she is

> constantly pulling off.

> Of course Mom or Dad have to stay to fight and keep the O2 on and

> tubes in. Still in Peds intermediate unit in Hershey.

> Thanks,

> Lynn Grabko

>

>

>

> > lynn we went thru five intense days at childrens hospital with

> montyman a few

> > years ago...he came out of surgery ripping all the tubes out and

> had ALL the

> > dr.s and workers jumping around....it is so hard on them and i

> believe harder

> > even for US, who want so badly for them to be happy and

> comfy......we

> > continue to stand with you all in prayer....

> > Donna, Montyman's mom

>

>

>

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

> Checkout our homepage for information, bookmarks, and photos

of our kids. Share favorite bookmarks, ideas, and other information by

including them. Don't forget, messages are a permanent record of the

archives for our list.

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

>

>

[Guest guest]

In a message dated 11/21/2002 2:18:02 PM Eastern Standard Time,

mfroof@... writes:

> I have been so busy, Jenna is home but should have stayed longer at Hershey.

>

Hi Lynn,

Prayers sent your way for you and Jenna. I hope you can arrange for some type

of help, yikes. I know how hard it must be.

(((((HUGS)))))

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

oh lynn (((HUGS))) i wil pray for her to get better soon!!! Does she have a

(county) case manager? we get one offered to use through MR Waiver and she

is of great hlep advocating with us for nathan and getting what hlep we

need. I can VEry relate at this time , it has been nonstop doc visits etc

here too just not as severe, for nathan its been two ear infections,

horrible flu with high temps projectile vomiting and sleeping all the time

and now upper respiratory, they just put him on another zpak. And i too

fell down the stairs carrying nathan's wet linen and severly sprained my

right foot still have my crutches but using them mainly around the house,

its to inconvenient for my work ---please noooo gripings,lol--- and i think

i have bronchitis too my doc appt is this morning at 1045, cant breathe, my

inhalers not working, all congested, coughing, and wheezing etc. nicholas

had the flu, and bad cold with upper respiratory but didnt get anything

form doc until now-- is on steroids for a week cuase has fluid behind ear

drums and both ear drums are sucked in(never heard of that one before) but

there is a light at he end of tunnel finding this out, its our second

opinion ENT visit --but this could be the reasons nicholas has always had

speech problems and barely able to read or spell or even write--hence the

dyslexia schhol wont dx--every time he has his hearing test bye AEA he like

nathan doesnt pass, and they always say he has an infection and so we have

to take him to doc next day but NO INFECTION. The latest ENT doc said he

must being going from normal to anywhere of severe hearing deficits with

this problem and if the med doesnt hlep he will need tubes but we are

professionals in the area of tubes for the ears nathan is on his 7th set.

Oh i dont want to forget hubby he had the flu last weeks too, poor guy

actually had to miss work for a day, was hard on him i think,lol. well i

gotta get going !!! I do hope rochelle gets well very soon and that you can

get a break, heck i do skilled nursning in my pts homes, too bad i dont live

near you, i would give you a break most definately. shawna.

Jenna

Hi, Everyone.......here's a letter from Lynn. She could use some prayers

from those who believe in the power of prayer healing.

I have been so busy, Jenna is home but should have stayed longer at Hershey.

Her Pediatricans felt she was discharged too soon and we have been in close

contact with them. Twice they wanted us to take her to the E.R. and have her

re-admitted. But it would have been the same story with the Drs. at Hershey

with saying she didn't need to be there.

I have been going round the clock with Jenna having her oxygen sat. checked,

nebulixed medication every 4 hours (each one takes 20 min.) oxygen, chest

percussion,etc. I am soooo tired. Now I have bronchitis and sprained my

lower

back trying to work with Jenna. We saw an X-Ray on Friday and she seems to

be

healing. There are so many concerns with " Adult Respiratory Distress

Syndrome " If she catches another bug she can go right back into it. And she

is being treated for an ear infection which is hard to believe concidering

all the antibiotics she is on. She also has a yeast infection on her face

and neck and groin. Our insurance was not a help, skilled nursing care was

recommended to give mom and dad a break, but it was refused.

Would you please let the group know what is happening , I don't have a

chance

to " drop in " yet ? Many Thanks, Lynn Grabko>>

[Guest guest]

Glad you found some!

In the " Files " folder there's some very good information regarding

Flax Oil under Flax Oil.doc. In that it states: " 1 tbsp per 45

pounds TOTAL body weight

Divided doses throughout the day

Do NOT take in the first meal after working out " .

It explains everything. The whys, whats, wheres, etc. Awesome! Yet

another fabulous bit of info from our pal . I tell you what,

90% of everything I've learned about BFL has come from her! (she's

rolling her eyes).

Don't worry about the fat, it's *good* fat! I don't even count the

calories or anything. I take 4 doses a day, but I've recently gone

down from 180 to 177, not much, but I'll probably switch to 3 doses

soon. ANYHOW...hope that answers your question! Read that info,

it's great!

JennA

> Hello there I was wondering if you could help me out. I bought

some

> Flax Lignan Gold oil yesturday to replace my capsules. On the

> bottle it only says to take 1 tbls daily. I have read on this site

> that people usually take 1 tbls per 45lbs. What should I do? Here

> are the nutritional facts

> per 1 tbsp

> Calories 120

> Calories from fat 120

>

> Total fat 13g 20%

> saturated fat 1g 5%

> polyunsaturated fat 10g

> monosaturated fat 2g

> cholesterol 0mg

> sodium 0mg

> total carbs0mg

> protein 0mg

>

> can you help me please

> Betty

[Guest guest]

The only thing that bothers me, a little, is that my parents are over

70. I would love the idea of my kids knowing my parents as long as

possible. I didn't get to know my Mom's parents since they died when

they were about 76 (in 1976). My Dad's Father died when I was a

baby, but my Dad's Mother died when I was a freshman in college. I

just think grandparents, and older folks for that matter, have so

many great stories to tell.

If you think about it, I suppose I'm glad I didn't get pregnant

before with someone I'm no longer with (i.e. ex-husband). Although,

I'm sure I would be loving that child very much today if I had. It's

all alot to think about! Having a child really frightens me,

like, will I be a good Mom? Will I be able to discipline well? Can

I really guide another human being on the path of life?? Sheesh!

I'm getting deep now! I didn't always take the right path myself, so

how do I know I can direct a child well? These are mostly alot of

rhetorical questions, and I certainly don't sit around stewing in

them, but they do creep into my head occasionally. Thanks for

letting me ramble!

JennA

>

> If I could do it all over again I think I would wait to have my

kids but mostly because I have way more patience now than I did even

a year ago. I had my first baby the day after I graduated from

highschool. (she's 9 now) Then I inherited my hubbys son (who I

adore by the way) (he's 13) and then I had my two little ones 17

months apart. (now 6 & 5) so I was finished by the time I was 22

(tubes tied). Don't get me wrong, I absolutely love my kids, I think

they are the greatest thing that ever happened to me but, I think I

would have been alot better mom starting at 28 or 38 instead of 18.

My mom is 49 and she would be an awsome mom to little ones right now

if she had them but I guess things happen the way they do for a

reason. any way I will stop blabbering now. I think women who have

kids later are usually better moms so I wish you all the luck and

prayers in having one of your own.

> Caer

removed]

[Guest guest]

Angie - I just took a peek at Jenna's photo album. She is a gorgeous little girl. What a beautiful face!

Melisa

Ian B. 1/23/04 Loma

thanks Satcy

Thanks for adding Jenna's 1 year anniversary photo to her before and afters. I don't know why i was having so much trouble.

Angie and JennaFor more plagio info

[Guest guest]

--Hey Shanno,

Describe to me what you see...You have come to the right place for

support..believe me. My daughter just received her helmet on

monday. This is a very emotional and stressful time. You want to do

the right thing. , my daughter was born with torticollis

(spasmed muscle in the neck) which caused her to want to keep her

left ear to her left shoulder and turn her head to the right,

expecially when sleeping. As a result the right side of her head in

the back flattened out. We changed how we did her diapers and always

made her look the other way. The pediatrician said do tummy

time.,,that was it. And that was at two months. So, we waited for

it to round out..not really thinking anything of it because we were

trusting the pediatrician...Well, we moved and saw another

pediatrician and I mentioned plagiocephaly(which I learned the term

on my own) and she didn't do anything about it as well...So, once

again we did nothing. What did your pediatrician say? I ran into a

woman with her son who had a helmet and long story short her I am

now. She is 6 and half months old. It is never too late to make

changes. Can you send me a picture of your daughter? By the way, my

husband and I are chiropractors...and we didn't even see it coming.

There is a lot of informatioan. I would be happy to help you along

the way.

Jackie-'s mom

- In Plagiocephaly , " john & shannon " <ne1469rbif@a...>

wrote:

> Hi all. I just found this group yesterday as I was searching for

> what could be wrong with my babys head.I knew there was a problem

> since birth.Docs keep saying it will shape out.I dont think so.She

> goes tuseday for her 6 month check up .I am really worried . I

> really think this is what she has.

[Guest guest]

Hi and welcome to the group. I knew since my daughter's birth her head

was mishaped. Her dr. said at her 6 mth checkup he wanted her to see the

specialist. After waiting for 3 months for the appointment she was

officially diagnosed with plagio. At 9 months she was banded. She wore it

for 12 weeks and received wonderful correction.

The good thing is this is correctable. You have done research and are on

top of things. If the Dr. doesn't listen to you at the 6 mth appointment,

demand a referral to a specialist. Where are you located? Maybe someone in

the group is in you area and could let you know about a plagio educated

doctor. Please keep us posted. You are a great mom.

Angie and Jenna(STAR grad)

Jenna

> Hi all. I just found this group yesterday as I was searching for

> what could be wrong with my babys head.I knew there was a problem

> since birth.Docs keep saying it will shape out.I dont think so.She

> goes tuseday for her 6 month check up .I am really worried . I

> really think this is what she has.

>

>

>

>

> For more plagio info

[Guest guest]

Hi,

Welcome to the group. Sadly, it's pretty common for doctors to say

it'll round out on it's own. Some babies do round out, most don't.

It's great that you're being so proactive about this and taking the

time to educate yourself. Can you post a pic of your baby? Where are

you located?

The younger a baby is banded the better and faster the correction.

Check out these 2 web sites:

http://www.cranialtech.com

http://www.orthomerica.com

It would be a great idea to educate yourself as much as possible

before you appt with the doctor.

> Hi all. I just found this group yesterday as I was searching for

> what could be wrong with my babys head.I knew there was a problem

> since birth.Docs keep saying it will shape out.I dont think so.She

> goes tuseday for her 6 month check up .I am really worried . I

> really think this is what she has.

[Guest guest]

Hello,

I see that already asked you the questions that I was going

to. Many doctors say that plagiocephaly corrects itself and that is

true for some cases but not all, it certainly wasn't for my son.

Would you like to post some pictures of Jenna for us to look at?

Welcome to the group,

Natasha

> Hi all. I just found this group yesterday as I was searching for

> what could be wrong with my babys head.I knew there was a problem

> since birth.Docs keep saying it will shape out.I dont think so.She

> goes tuseday for her 6 month check up .I am really worried . I

> really think this is what she has.

[Guest guest]

Hi and Welcome to the group!

Did you get a chance to visit the sites recommended to you that give

a good, illustrative definition of what positional plagiocephaly

is? It can be scary at first to see that your baby's head isn't

perfectly round, but rest assured, treatment is out there to help

round it out!

As said, it is impossible to predict which babies will round

out and which won't... I'm very glad you are researching plagio so

that you can make a treatment decision in a timely manner to get the

best correction possible.

Were those Jenna's pictures from the back view and on the bed? It's

difficult to see exactly what's going on, but it looks like Jenna

may have a brachy headshape, where the head is somewhat wider than

normal, and flattish all across the back. My own daughter had a

similar headshape to Jenna's, and we have lots of brachy babies here

at the group at various stages of treatment!!

It might help to share where you are located. We have a large

group, and someone might be able to recommend a specialist or

orthotist to help evaluate the situation with your daughter. If you

are not comfortable with her headshape, then you should demand a

referral from your ped to a specialist (such as a craniofacial,

plastic surgeon, ped neuro, etc.)

Take care,

Christie (Mom to Repo'd Remy)

> Hi all. I just found this group yesterday as I was searching for

> what could be wrong with my babys head.I knew there was a problem

> since birth.Docs keep saying it will shape out.I dont think so.She

> goes tuseday for her 6 month check up .I am really worried . I

> really think this is what she has.

[Guest guest]

,

Let us know when you're able to upload better pics. It's really hard

to make these ones out.

> Ok. I posted a pic of the back of Jennas head.I will take more

later,

> the camera was'nt working well.

[Guest guest]

I just checked out Jenna's photos. She is adorable! I think she

could have plagio. This is just my opinion. I am sure you will get

many more responses tomorrow. Hopefully someone in your area will

chime in.

Angie and Jenna(STAR band grad)--- In

Plagiocephaly , " john & shannon " <ne1469rbif@a...>

wrote:

> Hi. Posted more pics of Jenna.I hope they are better so anyone can

> tell me if they think she has this.

[Guest guest]

Hello there

I totally agree with what Debbie already told you. I don't believe

in the rouding out on its own either. Please have them refer you

out to see a specialist / specially if Jenna has been born with

plagio. Good luck and let us know how the appointment goes

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad 02/04

> Hi everyone.Sorry on the delays for the pics

> , need to get a new camera. We are located in Michigan.I am

totally

> freaking out about Jennas head. She has been like thta since birth

> and many docs have noticed it but kept syaing it will shape out as

> she grows.She will be 6 months this tuesday and has her 6 month

> check up.I am going to talk to them about he rhead but really dont

> think they will do anything.

[Guest guest]

It is kind of hard to tell from the 2 pictures in there. I do see

the ear misalignment though

> > Hi. Posted more pics of Jenna.I hope they are better so anyone

can

> > tell me if they think she has this.

[Guest guest]

Hi.I posted about 7 pics last night.

[Guest guest]

Hi,

I'm having a hard time telling with the two pictures you posted.

I'd try getting her in the bathtub if she can sit up in one of those

tub rings. For the birds eye view, try getting the picture while

you can see the tip of her nose and both ears. It isn't easy! Do

you live near a Cranial Tech (www.cranialtech.com)? They do a free

plagio consult.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> Hi. Posted more pics of Jenna.I hope they are better so anyone can

> tell me if they think she has this.

[Guest guest]

and ,

I just wanted to welcome you to the group. I see that you have

already received some great advise.

(too)

> Hi all. I just found this group yesterday as I was searching for

> what could be wrong with my babys head.I knew there was a problem

> since birth.Docs keep saying it will shape out.I dont think so.She

> goes tuseday for her 6 month check up .I am really worried . I

> really think this is what she has.

[Guest guest]

Hi ,

I don't know anything about medicaid, but I just wanted you to know

that this is not going effect the development of her brain at all.

The brain just grows in the shape it is given. That is a common

concern when babies are being banded.

, mom to Makenna LLUMC helmet grad '03

> HI.I have been reading all the posts here and have realized that

> Jenna has always kept her head to the left.She was taken c-section

> cuz she was breach.Many docs have noticed her head but havent done

> anything about it.She doesnt keep her head to the left anymore, her

> left ear was also folded over and that has straightened out now.I

am

> very worried about her brain.Does it do anything as far as

> development? We are in Warren michigan just outside of Detroit.

> Sounds like w ehave another strike against us. Jenna had medicaid

> ins.which i'm sure will not want to pay for it. Does anyone know of

> problems with medicaid with this condition?Also does anyone know of

> a place near us which does the helmets?