Re: New to group/

[Guest guest]

Hi ,

Welcome to the group! I am fairly new myself

I would be VERY interested in any thing you find along these

lines! Please forward to me? gina@...

Also I'd be interested in seeing the forms you mentioned in

your post below?

My forms are purely symptom/pain related to track patterns

and are at http://www.ginazone.com/medical/

But I'd love to do a journal as well and see other formats for doing this.

Hugs,

>From: " Luketich " <lukas42@...>

>Subject: New to group

>

>Hello

>

>I am new to the group. I am putting together a journal of my disease.

>Date diagnosised, test results etc. I was wondering if anyone had a format

>that they use. I saw the forms someone posted not long ago about their

>reactions and feelings. But I want too put together some sort of treatment

>nad reactions journal.

>Any help with the format would be greatly appreciated.

>

>

[Guest guest]

Hi ,

Welcome to the group! I am fairly new myself

I would be VERY interested in any thing you find along these

lines! Please forward to me? gina@...

Also I'd be interested in seeing the forms you mentioned in

your post below?

My forms are purely symptom/pain related to track patterns

and are at http://www.ginazone.com/medical/

But I'd love to do a journal as well and see other formats for doing this.

Hugs,

>From: " Luketich " <lukas42@...>

>Subject: New to group

>

>Hello

>

>I am new to the group. I am putting together a journal of my disease.

>Date diagnosised, test results etc. I was wondering if anyone had a format

>that they use. I saw the forms someone posted not long ago about their

>reactions and feelings. But I want too put together some sort of treatment

>nad reactions journal.

>Any help with the format would be greatly appreciated.

>

>

[Guest guest]

Hi ,

Welcome to the group! I am fairly new myself

I would be VERY interested in any thing you find along these

lines! Please forward to me? gina@...

Also I'd be interested in seeing the forms you mentioned in

your post below?

My forms are purely symptom/pain related to track patterns

and are at http://www.ginazone.com/medical/

But I'd love to do a journal as well and see other formats for doing this.

Hugs,

>From: " Luketich " <lukas42@...>

>Subject: New to group

>

>Hello

>

>I am new to the group. I am putting together a journal of my disease.

>Date diagnosised, test results etc. I was wondering if anyone had a format

>that they use. I saw the forms someone posted not long ago about their

>reactions and feelings. But I want too put together some sort of treatment

>nad reactions journal.

>Any help with the format would be greatly appreciated.

>

>

[Guest guest]

Hi ,

Welcome to the group! I am fairly new myself

I would be VERY interested in any thing you find along these

lines! Please forward to me? gina@...

Also I'd be interested in seeing the forms you mentioned in

your post below?

My forms are purely symptom/pain related to track patterns

and are at http://www.ginazone.com/medical/

But I'd love to do a journal as well and see other formats for doing this.

Hugs,

>From: " Luketich " <lukas42@...>

>Subject: New to group

>

>Hello

>

>I am new to the group. I am putting together a journal of my disease.

>Date diagnosised, test results etc. I was wondering if anyone had a format

>that they use. I saw the forms someone posted not long ago about their

>reactions and feelings. But I want too put together some sort of treatment

>nad reactions journal.

>Any help with the format would be greatly appreciated.

>

>

[Guest guest]

Thanks to you all for all the great words of encouragement and

information. I am in the Milwaukee area. Is it a good idea to also

see a pediatric neuro specialist for this?

> Hey !! Where are you from?? Maybe there are some people in

your area

> that are on the listserve that would offer you support and help.

We all

> know exactly what you are going through, and we know it is not

easy. But

> with friends you will make on this listserve, and the information

and

> support you will receive, you and your son will be okay

[Guest guest]

Hello , and Welcome to the group!

I'm so glad you have already gotten some help from , and from

Amy as well, probably by now. It can be so helpful to speak to

someone from your geographical area who has faced the same

situation. I belive the CranioCap brand is popular in your area;

have you heard back regarding getting an appt. at the Craniofacial

dept. yet? 4 months is very young, so you should expect excellent

correction for MacKenzie from a helmet/band.

Take care, and please keep us posted on how her specialist appt.

goes,

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " mcasper10 " <mcasper10@h...>

wrote:

> Hi, my name is and I have a 4 month old (today!) duaghter

named

> MacKenzie who is just got her referral today for her plagio. We

are

> in the Twin Cities area in Minnesota and I have been talking to

> already and hope to talk to Amy.

> We noticed her head flattening on the back left side before her

two

> month appt. at pediatrician. I brought it up and he said if it was

> still flat at 4 months he would give us a referral. Wish I had

known

> then what I know now, we wasted two months. Anyways, we got our

first

> referral today. I have a call into the Craniofacial team, waiting

to

> hear back to get an appt.

> I have learned so much in the past weeks from these boards and all

> the wonderful info on the website, I would just like to say tahnk

> you. Like another poster said today, she thought she knew

everything

> about parenting, I have two boys ages 12 and 9, but they were in

the

> time where we put them to sleep on their sides, never dealt with

this

> before.

> I will be posting when I can, but life is pretty hectic with

three,

> thanks again for all the info everyone has posted!

>

[Guest guest]

--- In , " robertbudder "

>Welcome to the group . I am fairly new to the group also and

I am waiting for CI surgery early next year. I have learned so much

from everyone in this group and every question I have ask has been

answered thoroughly. One suggestion I have is that you obtain the

videos or CD's the different cochlear implant companies have about

children who have received the gift of hearing.

After my approval to have CI surgery my audiologist gave me a package

by one company(Advanced Bionics) that had two videos in it....one

about adults receiving the CI and one about a very young little

girl. My audiologist was out of Nucleous Freedoms information packet

but told me to email the company and they would send it to me. Sure

enough, Nucleous Freedom sent me a video about their product and the

story of an adult who have received a CI and an infant who received a

CI. The story about the infant is followed all the way up until he

is school age. I think you and your son would be greatly encouraged

by seeing these. The video and CD show the most " perfect " situation

with a CI and I was told that everyone may not respond as well or as

quickly as the people in the films. That is when the motto " keep your

expectations low and your hopes high " has a whole new meaning.

I have worn hearing aids for 20 years (I am 63) and have Meniere's so

my hearing is just about gone. I hear " noises " but no discernment

and must read lips. Without my two hearing aids I hear nothing at

all. While going through the process of evaluation one test was on

the auditory nerves in both ears and they tested fine.

I have read every book written by people who have CI's and if you are

interested in the list let me know and I will send you the titles.

Keep your hopes high!

[Guest guest]

I am interested in the list of books you mentioned. I am new to this whole

thing, passing my evaluation last month with zero speech comprehension in both

ears. Waiting for CT scan now. I have no medical insurance to cover all this.

Thanks!

Sherry

eve5hear <eve5hear@...> wrote:

--- In , " robertbudder "

>Welcome to the group . I am fairly new to the group also and

I am waiting for CI surgery early next year. I have learned so much

from everyone in this group and every question I have ask has been

answered thoroughly. One suggestion I have is that you obtain the

videos or CD's the different cochlear implant companies have about

children who have received the gift of hearing.

After my approval to have CI surgery my audiologist gave me a package

by one company(Advanced Bionics) that had two videos in it....one

about adults receiving the CI and one about a very young little

girl. My audiologist was out of Nucleous Freedoms information packet

but told me to email the company and they would send it to me. Sure

enough, Nucleous Freedom sent me a video about their product and the

story of an adult who have received a CI and an infant who received a

CI. The story about the infant is followed all the way up until he

is school age. I think you and your son would be greatly encouraged

by seeing these. The video and CD show the most " perfect " situation

with a CI and I was told that everyone may not respond as well or as

quickly as the people in the films. That is when the motto " keep your

expectations low and your hopes high " has a whole new meaning.

I have worn hearing aids for 20 years (I am 63) and have Meniere's so

my hearing is just about gone. I hear " noises " but no discernment

and must read lips. Without my two hearing aids I hear nothing at

all. While going through the process of evaluation one test was on

the auditory nerves in both ears and they tested fine.

I have read every book written by people who have CI's and if you are

interested in the list let me know and I will send you the titles.

Keep your hopes high!

[Guest guest]

>

> I am interested in the list of books you mentioned. I am new to

this whole thing, passing my evaluation last month with zero speech

comprehension in both ears. Waiting for CT scan now. I have no

medical insurance to cover all this.

> Thanks!

> >

> Hi Sherry,

Here is what I have read so far:

Wired For Sound by Beverly Biderman

Hear Again by Arlene Romoff

Rebuilt by Chorost

Bridge to Sound with a " Bionic Ear " by Farley

I Danced by Dora Weber

Journey Out of Silence by Dora Weber

Most of the books I got through Amazon.com

I have learned so much from all the others who post on this website

and you will too! No insurance? oh my! maybe someone reading the

posts has suggestions for you about getting help with the cost.

I will post my surgery date when I get it, but in the meantime I am

enjoying learning so much from such nice, helpful, experienced CI

users.

I hope the list of books helps.

Soon to hear,

>

>

>

>

>

[Guest guest]

Hi ,

Thanks for the tip about Ezekial Bread. I'll be

looking for this bread when I go shopping over the

weekend! I also know how good sweet potatoes are for

us. I will be replacing my white potatoes with the

sweet potatoes. I'll have to try making some of the

sweet potato chips.

I went to the ER4YT web site and saw some of the foods

that I had questions about. Now I guess I have to

find out if I'm a secretor or a non-secretor. I could

always just follow the secretor advice like the book

says. Do you all know whether you are a secretor or

not? Do you think it really matters for the way you

are eating?

Sue

Florida

__________________________________________________

[Guest guest]

In a message dated 5/17/2006 8:31:09 PM Eastern Standard Time,

misssuetest@... writes:

Do you all know whether you are a secretor or

not? Do you think it really matters for the way you

are eating?

I'm a non-secretor and it was important that I found out. We have an even

more restrictive diet so when I was eating supposedly neutral foods, some were

avoids that made me sick.

Max

[Guest guest]

Morning and thank you for your response. I did a little more digging. Funny in

a way. I decided " Ok...look up stuff on how the lungs work " . Maybe

understanding how they work would help me understand how Tommy's isn't working

so well. That led me to finding:

Extrapulmonary restrictive lung disease:

" Extrapulmonary " means " outside the lungs. " The lungs are usually normal, but

their expansion is limited. This reduces the air volume and the capacity to take

air in. Impaired expansion makes it difficult for the lungs to maintain

sufficient air exchange. Rapid, shallow breathing becomes the norm. Shallow

breathing can cause the air sacs to close down (atelectasis) and the lungs

become stiff.

Common extrapulmonary diseases are:

Neuromuscular and neurologic (Guillain-Barre Syndrome, polio myelitis or

myasthenia gravis)

Thoracic cage (chest wall deformities, kyphosis or Pickwickian syndrome)

Pleural (scoliosis or pleurisy) "

So Tommy has Extrapulmonary restrictive lung disease. Only thing I am not fully

sure of is that while I know his would be thoracic cage/chest wall deformity...

and the kyphosis but they put scoliosis under pleural...so not clear on

that...but it does answer one question and that is because he does the shallow

breathing...doesn't get air in as well as he should...although with the

breathing treatments that helps open the airways...I would think that as he has

more and more trouble with it then like it said he would develop atelectasis and

the lungs would become stiff. He already has signs of it in the upper left lobe

and the lower left lobe. I need to ask the pulmonologist about the right lung

....which is the bad one...there is no mention of any atelectasis but then

everytime someone has done xrays they say they have trouble really seeing the

right lung due to the spine, the rotation and hardeware. When one hospital

thought he may have had an

aspiration they did like three xrays and still couldn't really see clearly the

right lung so they went ahead due to the high fever, elevated heart rate,

needing oxygen, and treated it as an aspiration. I would have thought Tommy

would have a lot of pnemonias but other than the possible aspiration one and one

other possible time he doesn't seem to have that problem...which is weird as

severe as he is.

I like the Treatments:

Treat the underlying cause

Use supplemental oxygen when needed

Use effective coughing techniques

Strengthen your muscles

Conserve energy

Use relaxation techniques

Get a flu vaccine yearly

Ok....can't fix the spine or rib rotation...do use supplemental oxygen when sats

are low...they don't mention breathing treatments but a couple other sites do

and we do that daily...can't really strengthen the muscles..I mean he has CP and

it's severe...doesn't do a whole lot so no problem on conserving energy...not

sure how to teach someone that has CP/deaf relaxation techniques...they can't

even do a full pulmonary function test on him cause he can't do what they want

him to do...and we will be getting the flu vaccine done this year..never

have...but the pulmonologist did recommend it.

How bad is your curve? Have you ever had surgery or is that an option if you

haven't? Tommy's back was great right afte the surgery...when we saw the first

follow up xray it was like " wow " and even his whole body was like it was before

the scoliosis...unfortunately continued growth became a problem. Would have

been nice to have waited a couple more years but it progressed so fast and was

continuing...can't even imagine what it would have been like another two years.

Puberty was definitley his enemy in this...too bad we couldn't have skipped that

all together.

Thanks for your post.

> From: Sara Dolan <mollymol6@...>

> Subject: Re: New To Group

> Scoliosis Treatment

> Date: Friday, August 13, 2010, 7:43 AM

> I don't have an answer for you and

> hope someone on the group might know more. I

> have severe (no surgery) scoliosis and severe (lifelong)

> asthma. I have been in

> and out of the hospital with asthma and pnuemonia. I do

> know the less you use

> your lung - function deteriorates. Also, in my case the

> worsening curve is

> restricting my lung function as well.  Bless you and your

> son. Sara

>

>

>

>

>

[Guest guest]

Hi . Thank you for your response. Our son was seeing an infectious

disease doc, ortho surgeon doc, pulmonologist, nephrologist, urologist. We had

to start cathing our son about a year ago...never any problems...sometimes he

would have days where he would go just fine...then days where he would go 16-20

hours of not going and we had to start cathing. Never had an infection. The

two back to back ones have been in the last couple of months. The only way the

infection can be dealt with is total removal of all hardware. The bacteria is

on the rods and a year and a half of antibiotics keeping it there finally

didin't work anymore. Due to the rotation of the vertebrae and ribcage one of

the rods is now almost more like on the side...that would be the left side.

When they went in to deal with the first infection they realized that with the

rotation the one rod was not only off to the side more but embedded a lot more

than they thought it would

be. If they try to remove the hardware both the ortho and the pulmonologist

say he would most likely suffer pulmonary collapse and not come off

ventillation. Tommy has a stable 70 degree kyphscoliosis/lordosis. He has a 90

degree broad thorocolumbar curve to the right of 90 degrees.

In ealry October I think of last year we saw the ortho, the infectious disease

doc and talked a number of times with the pulmonologist. It came down to there

being nothing more we can do. The ortho said she could try to go back in and

clear up the one area but to try and totally get rid of it would mean taking it

all out...he has rods that extend from the top and then at the bottom curve

sorta out and into the pelvic area...in my mind I visualize it...cause I have

copies of all his xrays, his three dimensional CT scan and with the severe lung

problems now and what they would have to do...he wouldn't survive or he'd end up

on machines and us having to then make the decision to take him off...which we

don't want to be in that position.

He had a pretty good quality of life in spite of the severe Cerebral

Palsy...puberty started the downward slide...now he is on hospice and our goal

is to make him as comfortable as possible, try to get out ever now and then if

possible...well tomorrow we have to get out cause we go to court for

guardianship since he just turned 18...they have to " see him " ...his lawyer that

was assigned was out last week....had to inform him that we were going for

guardianship and he has the right to fight it...Tommy is profoundly deaf and

doesn't talk...I think he was more trying to see the TV around the guy...lol

Anyways..sorry for the babbling...the hospice nurse will be out today and I did

find something on line that I printed out and want to show her...

" Infections of the vertebrae usually develop gradually, causing persistent back

pain and tenderness when touched. Pain worsens with movement and is not relieved

by resting, applying heat, or taking analgesics. Fever, usually the most obvious

sign of an infection, is often absent.

When osteomyelitis results from infections in adjacent soft tissues or direct

invasion by an organism, the area over the bone swells and becomes painful.

Abscesses may form in the surrounding tissue. These infections may not cause

fever. Infection around an infected artificial joint or limb typically causes

persistent pain in that area.

Chronic osteomyelitis may develop if osteomyelitis is not treated successfully.

It is a persistent infection that is very difficult to eradicate. Sometimes,

chronic osteomyelitis is undetectable for a long time, causing no symptoms for

months or years. More commonly, chronic osteomyelitis causes bone pain,

recurring infections in the soft tissue over the bone, and constant or

intermittent drainage of pus through the skin. Such drainage occurs when a

passage (sinus tract) forms from the infected bone to the skin surface and pus

drains through the sinus tract. "

So...he has the passage/sinus tract, he has screws and rods in that area, he has

bacteria up and down the rods and wires probably and screws probably...it is

painful according to this but the one " judge " of infection, fever, may be

absent. Actually he had an ongoing low grade fever since August of last year

with occasional spikes up to 100 or 101...now all the sudden with a UTI, ear

infection and the spinal infection his temps are running more like in the 97's

to 98's...I get the whole thing that apparently there may be no fever with the

spinal infection...but would think he would be running a fever with the ear

infection and UTI...I mean usually with his ear infections he gets up to 101 or

102. He's only had one bad UTI that went to the kidney but that was years

ago...and that was 103 even with tylenol/motrin alternating, vomiting, seizures

but there were others in the household with the flu...so I didn't figure out it

was a UTI till I took him into

the ER and all

I'm babbling...I need to just take a deep breath I guess...I was frustrusted

yesterday when I joined because he sleeps most of the time, is " off " most of the

time with a few good moments here and there and when he was in obvious

discomfort and pain yesterday afternoon/evening I realized that this will be the

hard part of the whole process. I can handle him sleeping, being out of it or

just not himself...but the pain and not knowing what is causing the pain and

wanting it to go away is the real hard part. Husband said he was able to turn

him early this a.m....he was awake...now will sleep a bunch...but he didn't seem

as uncomfortable. I just wish he could tell me if the infection in his back

hurts...I guess I wanted to know if anyone had ever had it so they could tell me

what it feels like.

We did Tylenol with codene at 4 pm and then 8 pm, the full dose of two tsp and I

guess that helped...we didn't have to get up every few hours.

Thank you again for your response...