Jenna

[Guest guest]

Hi there

It is really a bit shocking when someone actually tells you there is

something there- even though you obviously suspected it in your

heart of hearts as you had done lots of research and were concerned

about her. In the long run I think that although it is concerning to

hear that your daughter has 'brachy', you are on your way to find

out more about it and make some decisions. Lucikly you noticed at 6

months and so you have time to go to the children's hospital and

find out more about how severe the problem is and correspondingly,

what you might want to do about it, if anything. I think you've done

exactly the right thing by getting informed and going to the doctors

and by following this up.

I'm sure the shock aspect will wear off as you find out more and see

a clearer path for yourselves, and it is probably better than that

horrible nagging feeling that something isn't quite right which we

all had til we went to get it investigated.

Let us know how it goes with Jenna's appoinment.

Take care

Hannah (Lucia's mum, UK)

> Hi. Jenna had her 6 month checkup today and I brought in pics and

> articles about plagio to the doc.I told them about my concerns

wiht

> her head and the doc said of course that she will outgrow it but

he

> would refer me to a neurosurgeon to make me feel better.I said

> fine.When we were getting ready to walk out the door 6 docs came

to

> us and one of them was a neurosurgeon, he took one look at he

rhead

> and said brach.So now tomorrow i call to get an appt at childrens

> hospital.I dont know if I should be happy or upset.I am really

> freaking out now.

[Guest guest]

Hi,

I'm glad you were able to get a referral at least. Let us know when

her appt is and how it goes. Good for you for recognizing it and

pursuing a second opinion.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> Hi. Jenna had her 6 month checkup today and I brought in pics and

> articles about plagio to the doc.I told them about my concerns

wiht

> her head and the doc said of course that she will outgrow it but

he

> would refer me to a neurosurgeon to make me feel better.I said

> fine.When we were getting ready to walk out the door 6 docs came

to

> us and one of them was a neurosurgeon, he took one look at he

rhead

> and said brach.So now tomorrow i call to get an appt at childrens

> hospital.I dont know if I should be happy or upset.I am really

> freaking out now.

[Guest guest]

Hi

I'm sure it was a shock to have a doc dx soo fast, but I'm thinking

he sees alot of plagio and cranio kids being a neurosurg. I'm glad

you can get things rolling. Good luck and keep us updated

Sandy Willow's Mom

Cranio Germany Grad 02/04

> Hi. Jenna had her 6 month checkup today and I brought in pics and

> articles about plagio to the doc.I told them about my concerns

wiht

> her head and the doc said of course that she will outgrow it but

he

> would refer me to a neurosurgeon to make me feel better.I said

> fine.When we were getting ready to walk out the door 6 docs came

to

> us and one of them was a neurosurgeon, he took one look at he

rhead

> and said brach.So now tomorrow i call to get an appt at childrens

> hospital.I dont know if I should be happy or upset.I am really

> freaking out now.

[Guest guest]

Hi,

I think feeling happy and upset at the same time is completely

normal! I would be happy to be getting a proper evaluation of my

baby, but sad that there may be a definitive diagnosis of plagio. I

am impressed that you went to her checkup armed with photos and

information, because it showed that you were prepared to fight for

an educated evaluation, even if it was scary personally.

Would you keep us posted on when and how Jenna's appt. at Children's

hospital goes?

Take care,

Christie (Mom to Repo'd Remy)

> Hi. Jenna had her 6 month checkup today and I brought in pics and

> articles about plagio to the doc.I told them about my concerns

wiht

> her head and the doc said of course that she will outgrow it but

he

> would refer me to a neurosurgeon to make me feel better.I said

> fine.When we were getting ready to walk out the door 6 docs came

to

> us and one of them was a neurosurgeon, he took one look at he

rhead

> and said brach.So now tomorrow i call to get an appt at childrens

> hospital.I dont know if I should be happy or upset.I am really

> freaking out now.

[Guest guest]

{{{SHANNON}}} It will be OK. This is theee hardest part!!!

Especially when they acknowledge it but leave it up to you to decide

and/or fight to get a prescription for the band. I think you are SO

SMART to go forward in getting it checked out. In hindsight I WISH

Colin had gotten his band at 6 or 7 mos. old. The sooner the better

as treatment time will be shorter. It will fly by and she will have

a rouner noggin for the rest of her life ASSURED. I just could not

leave it up to nature anymore. You will have no regrets. GL and let

us know if you need anything.

Sue

Colin F., almost 10 mos. brachy

STARband 6/29

Buffalo, NY

> Hi. Jenna had her 6 month checkup today and I brought in pics and

> articles about plagio to the doc.I told them about my concerns wiht

> her head and the doc said of course that she will outgrow it but he

> would refer me to a neurosurgeon to make me feel better.I said

> fine.When we were getting ready to walk out the door 6 docs came to

> us and one of them was a neurosurgeon, he took one look at he rhead

> and said brach.So now tomorrow i call to get an appt at childrens

> hospital.I dont know if I should be happy or upset.I am really

> freaking out now.

[Guest guest]

I will be praying for you and Jenna.

> Hi all. Just writing to say that Jenna goes this morning for her

> first visit to the neurosurgeon.Really dont know what to expect,am

> really nervous.I will post when we get back as to the results.

[Guest guest]

Our neuro appts were pretty easy, nothing to be nervous about. All

he did was look at, feel, and measure Hannah's head. They were all

quick appts. Be sure to let us know how it goes.

, mom to Hannah, DOCgrad 7/29

Cape Cod, Ma

> Hi all. Just writing to say that Jenna goes this morning for her

> first visit to the neurosurgeon.Really dont know what to expect,am

> really nervous.I will post when we get back as to the results.

[Guest guest]

Many times kids do freak for pictures / x rays and so on. My exp is

that Willow was actually kind of reserved to react to the casting in

any way " at first " b/c of the netting they have over the head /

face. Then she was madder than a horse, but no harm done. Try a

paci / bottle / fav toy / lollipop, anything that might distract.

The casting is over quick, and then the rest should be a breeze.

Let us know how the xrays come back

Sandy Willow's Mom

> Hi.We just got back from the neurosurgeon.He said what I

> expected.Brachy.He says its mild.Took x-rays of the skull , results

> come back monday.He said he wants to get her casted right away.I am

> terrified of the casting.Jenna freaked out today with the x-

> rays.Will keep you posted on whats next.Any suggestions for the

> casting?

[Guest guest]

Hi,

The casting isn't nearly as bad as it sounds. It's quick and

painless, but you should expect her to cry during it. A lollipop

may help or a bottle or pacifier if she takes one. Let us know how

it goes!

, mom to Hannah, DOCgrad 7/29

Cape Cod, Ma

> Hi.We just got back from the neurosurgeon.He said what I

> expected.Brachy.He says its mild.Took x-rays of the skull ,

results

> come back monday.He said he wants to get her casted right away.I

am

> terrified of the casting.Jenna freaked out today with the x-

> rays.Will keep you posted on whats next.Any suggestions for the

> casting?

[Guest guest]

Hi,

Please let us know the x-ray results when you get them. The casting

really isn't all that bad. It's painless and it's over quickly. Bring

a lollipop!

> Hi.We just got back from the neurosurgeon.He said what I

> expected.Brachy.He says its mild.Took x-rays of the skull , results

> come back monday.He said he wants to get her casted right away.I am

> terrified of the casting.Jenna freaked out today with the x-

> rays.Will keep you posted on whats next.Any suggestions for the

> casting?

[Guest guest]

,

Please try to not let this stress you out too much until your doctor

can take a look at the x rays himself. It was in poor judgement for

him to call you and tell you this BEFORE he looked at them himself.

I cannot believe he did that! A#$h*$%!

Try and hang in there until Monday. <<hugs>>

The other .

> Hi. I'm freaking out!!!Just got call from nuerosurgeon , on a

friday

> night mind you, and hes telling me that he thinks this is a

mistake

> but the report from the x-rays says jennas suteres in the front

are

> closed. He said he didnt get to see the x-rays yet, but he really

> thinks it's a mistake. Then why in the hell would hje call this

late

> and make me worry all weekend. I'm so scared. Hopefully i''ll make

> it to chat tonight

[Guest guest]

,

That was so nice of him to worry you when he hasn't even seen them -

ugh. Please try and relax until Monday - I know so impossible at

this point.

Were the xrays today? He probably wanted to talk to you before the

weekend so you wouldn't worry but then again telling you what he

told you didn't help.

mom to na

> Hi. I'm freaking out!!!Just got call from nuerosurgeon , on a

friday

> night mind you, and hes telling me that he thinks this is a

mistake

> but the report from the x-rays says jennas suteres in the front

are

> closed. He said he didnt get to see the x-rays yet, but he really

> thinks it's a mistake. Then why in the hell would hje call this

late

> and make me worry all weekend. I'm so scared. Hopefully i''ll make

> it to chat tonight

[Guest guest]

Hi,

Did he say the metopic suture? If I'm not mistaken if it is the

metopic suture, surgery isn't always required. Please try not to

worry, x-rays aren't always the best way to rule out cranio. He may

oreder a ct-scan be done to get more accurate pic. Keep us posted.

> Hi. I'm freaking out!!!Just got call from nuerosurgeon , on a

friday

> night mind you, and hes telling me that he thinks this is a mistake

> but the report from the x-rays says jennas suteres in the front are

> closed. He said he didnt get to see the x-rays yet, but he really

> thinks it's a mistake. Then why in the hell would hje call this

late

> and make me worry all weekend. I'm so scared. Hopefully i''ll make

> it to chat tonight

[Guest guest]

Hello ,

Nothing that I say will make you stop worrying, but please try to.

Like said, X-rays aren't the best tests. They might have Jenna

do a CT scan to have a more detailed look at the stures.

Is he calling you back Monday? Let us know how it goes, and keep in

mind that this might have really been a mistake. Sad though he would

call you Friday night and tell you this.

Sandy Willow's Mom

> Hi. I'm freaking out!!!Just got call from nuerosurgeon , on a

friday

> night mind you, and hes telling me that he thinks this is a mistake

> but the report from the x-rays says jennas suteres in the front are

> closed. He said he didnt get to see the x-rays yet, but he really

> thinks it's a mistake. Then why in the hell would hje call this

late

> and make me worry all weekend. I'm so scared. Hopefully i''ll make

> it to chat tonight

[Guest guest]

Thanks !

I am gluten intolerant myself. I have followed the specific

carbohydrate diet off and on using nut flours etc . I have lots of

recipes if you are interested.

Jenna did have boughts of diarrhea and constipation when she was

younger so I wondered too about her. When we had the allergy testing

done she was the only one in the family that showed no allergies but

we just had her tested last year and I wondered if the fact that she

chews her food so long . The enzymes in the mouth would have it

mostly digested by the time she swollowed that maybe that is the

reason she would not show allergies now. But I did not have the

allergy testing done by a medical doctors with needles etc so who

knows. I know Dr Deatherage has seen a connection with gluten

intolerance and Achalasia in his patients.

Thanks for your prayers and encouragement.

~Francine

- my daughter had horrible scaly stuff on her head until just

recently. She is 9 and has had it since infancy. The difference?

We found

out she has Celiac Disease. She cannot have wheat or gluten

products. We

put her on a completely wheat and gluten free diet and her health

(many

health factors including constipation and/or diarrhea) improved

dramatically

in days and completely over the last 15 months. For the last 3

months, her

scalp has been clear (Scalpicin medicine helped when it was really

bad).

" Wow. For the first time in her life, since

she was a few months old, she looks healthy. " . It is great. I look

forward

to hearing the same about Jenna and pray you can be directed to the

best

physician to meet her needs.

Cindi in PA

[Guest guest]

Jenna,

Unless there's some reason, other than your explant,

you're too sore to lift your arms, you need to get

started on stretches, exercises! . . .

Chances are some scar tissue is creating a problem.

The sooner you get to work on it, the better. It can

take 1-2 years for scar tissue to relax and act like

normal tissue.

Hugs,

Rogene

[Guest guest]

Hi rogene! It was just the normal soreness you get the day after you

work out! I think it was also because i haven't worked those muscles

out in so long. they didnt know what was going on! I do need to do

more stretching like you suggested. I am doing a light yoga class as

well that the gym provides during the week. Hopefully this will help

with my my soreness and with my mind! I need to relax! take care!

>

> Jenna,

>

> Unless there's some reason, other than your explant,

> you're too sore to lift your arms, you need to get

> started on stretches, exercises! . . .

>

> Chances are some scar tissue is creating a problem.

> The sooner you get to work on it, the better. It can

> take 1-2 years for scar tissue to relax and act like

> normal tissue.

>

> Hugs,

>

> Rogene

>

[Guest guest]

My daughter just told me about Zones Pilates today and I went ahead

and bought the DVD online. She wants to do it too. I've done the

Windsor Pilates and like it alot, but this Zones Pilates sounds good

too. Has anyone here done the Zones Pilates?

I really find yoga wonderful, when I make the time to do it! Last

night I made a firm resolution to start working out daily without

fail! I spend too much time working in my office and it is ruining

me. Recently I noticed one of my knees getting too stiff after a

day in my office. I really can't make any excuses anymore! It sure

does feel great to get outside and walk too.

Patty

>

> Hi rogene! It was just the normal soreness you get the day after

you

> work out! I think it was also because i haven't worked those

muscles

> out in so long. they didnt know what was going on! I do need to do

> more stretching like you suggested. I am doing a light yoga class

as

> well that the gym provides during the week. Hopefully this will

help

> with my my soreness and with my mind! I need to relax! take care!

[Guest guest]

I too heard that zone pilates is good. it works on your core and

your balance. the first time i tried it on my excersice ball i was

all over the place! It takes some practice with the balancing part

but I can tell you I felt it! I personally like Bob Greene's Total

Body Makeover strength training program. It is basically a series of

excersises using rubber resistance cords. I like it because you

don't have to use heavy weights.

>

> My daughter just told me about Zones Pilates today and I went

ahead

> and bought the DVD online. She wants to do it too. I've done the

> Windsor Pilates and like it alot, but this Zones Pilates sounds

good

> too. Has anyone here done the Zones Pilates?

>

> I really find yoga wonderful, when I make the time to do it! Last

> night I made a firm resolution to start working out daily without

> fail! I spend too much time working in my office and it is

ruining

> me. Recently I noticed one of my knees getting too stiff after a

> day in my office. I really can't make any excuses anymore! It

sure

> does feel great to get outside and walk too.

> Patty

>

> --- In , " Jenna " <jgalatis@c...>

wrote:

> >

> > Hi rogene! It was just the normal soreness you get the day after

> you

> > work out! I think it was also because i haven't worked those

> muscles

> > out in so long. they didnt know what was going on! I do need to

do

> > more stretching like you suggested. I am doing a light yoga

class

> as

> > well that the gym provides during the week. Hopefully this will

> help

> > with my my soreness and with my mind! I need to relax! take care!

>