Suggestions please

[Guest guest]

Hi Sophie. Welcome to the Group.

I know it's hard when you are in pain and you have to give up

activities you enjoy, but try not to get discouraged. You really

need a positive attitude to get through this. You can get recover

from this if you put the time and effort in. I had given up running

(which I always loved) for almost a year because two doctors told me

I had to. After finding a doctor who figured out my real problem,

I've been running about 30 miles a week, plus biking and swimming.

The first thing you have to do is figure out what is really " wrong "

with you. CP may be the diagnosis, but that isn't the problem; it

is the result. What did the doctors tell you? Do you have an

alignment problem? Is there a muscle imbalance in your legs? Have

you had X-rays or MRIs?

In my case, I was diagnosed with CP but didn't have it at all. My

problem was in my hips, which led to pain in my knee. Maybe you've

got some other problem that is leading to your knee pain. You have

to find a doctor that is going to do a thorough examination on you.

The best results so far (at least from people in this Group) have

been pain specialists, osteopathic doctors and other doctors who

treat musculoskeletal problems without surgery. Most of us found

orthopedic surgeons to be of little help.

Anyway, tell us some more about your knees and maybe we can help.

There are a lot of people in this group who know an awful lot about

knees.

Hang in there. You WILL get better.

- Doug

dougfromct2002@... (dougfromct2002 at dot com)

> hey everyone. my name is sophie, and i am 16 and have been

diagnosed

> with chondromalacia patella (c.p., and i refer to it) for a year,

> though i have been suffering from it for more than 3 i suspect. i

am

> an avid runner and tennis player (thats the cause, i think), but i

> had to make the most excruciating choice of my life this spring

and

> quit our high school team because the pain was too much. i have it

in

> both knees, although my left knee is much much worse. i have

braces,

> but i only wear them when the pain is just unbearable, because

they

> are so bulky and make my pants fit funny. i do a few exercises for

> them, but i hate sitting still so i get bored and frustrated after

a

> few minutes. i hate the fact that i'm going to have to life with

this

> for the rest of my life, and i am really scared that i'm going to

be

> in a wheelchair by 30 because the pain is just going to get worse.

> does anyone have any other suggestions, like maybe foods to eat?

> or...different, non-bulky braces or medications (none have worked

for

> me so far. we even tried most arthritis medicines.) i really need

> help on this because my three doctors said they can't fix it and i

> just have to learn to live with it. i have read every single

article

> that was ever written about it i think, and i'm running out of

places

> to look. i appreciate you taking time to read this, and maybe

write

> me back a few suggestions.....thank you so much. -sophie

[Guest guest]

Hey Sophie, my name is and I'm totally new to this group. I also have CP

but not to the extent you speak of. I've been running my entire life and even

started racing about five years ago. I believe my current CP has been caused by

too much horseback riding. It may seem like a dumb question but I'm curious,

have the doc's you've been to been sports doc's? Have strengthening exercises

done little or nothing? Why is YOUR case " incurable " . What is it about you

that is different?

sophie_8516 <sophie_8516@...> wrote: hey everyone. my name is sophie,

and i am 16 and have been diagnosed

with chondromalacia patella (c.p., and i refer to it) for a year,

though i have been suffering from it for more than 3 i suspect. i am

an avid runner and tennis player (thats the cause, i think), but i

had to make the most excruciating choice of my life this spring and

quit our high school team because the pain was too much. i have it in

both knees, although my left knee is much much worse. i have braces,

but i only wear them when the pain is just unbearable, because they

are so bulky and make my pants fit funny. i do a few exercises for

them, but i hate sitting still so i get bored and frustrated after a

few minutes. i hate the fact that i'm going to have to life with this

for the rest of my life, and i am really scared that i'm going to be

in a wheelchair by 30 because the pain is just going to get worse.

does anyone have any other suggestions, like maybe foods to eat?

or...different, non-bulky braces or medications (none have worked for

me so far. we even tried most arthritis medicines.) i really need

help on this because my three doctors said they can't fix it and i

just have to learn to live with it. i have read every single article

that was ever written about it i think, and i'm running out of places

to look. i appreciate you taking time to read this, and maybe write

me back a few suggestions.....thank you so much. -sophie

[Guest guest]

hey allen - here's the scoop. one of my docs, the first one, was just an average

" everything " doctor, who first told us he didn't know what i had and i should

see a specialist. sooo i went to a very advanced sports-medicine doctor who is

extremely good and well known i think- he has even treated a few well known

athletes (mostly tennis players which come here)- and he came to the conclusion

that it was cp, and gave me braces and a few types of medicine to try. a month

later i was back in his office at square one - nothing helped. i got two new

metal supported (but bulkier) braces, which help SOMETIMES now, and we tried

every type of medicine he could think of. none of which worked. i then went to a

lady that specializes in bone problems in women, thinking that maybe there is

something wrong with the alignment of my hips or feet or whatever else. it turns

out my hips cause my femur bones to come inward, in a sort of triangle, and then

when it joins with the knee and lower bone (which are STRAIGHT) there is major

friction. if i could draw a picture, it would explain it better. make a fist and

then cup it in your other hand so that your middle finger is in the center -

fits nicely, huh. ok now rotate your hand slightly so that your pointer finger

is in the center of the cup. now try to move them. much more friction eh. thats

how my cp and many many many other cases are caused. so, thats why they have

decided i will have mine for the rest of my life (without surgery). bone

structure. i haven't found any ways they could fix that yet, though i'm looking

into a brand-new proceedure i found where they insert a small disk under the

side of the bone where the worn away cartilage is. i'm trying to find out as

much on that as i can right now.

i hope that helped with your curiosity, and i hope hope hope your case ISN'T

permanent. some cases are causes by purely hormones or growth spurts or even

changes in living style (like much more walking or whatever) and symptoms will

gradually disappear. feel free to write me back with any questions or comments

and i'll do my best to answer them!

-sophie

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

[Guest guest]

what blood test s, or tests are prescribe for adrenal

insufficiency.

,

I may not be exact on this, but when my dr. was going to test me I remember

seeing DHEA, Cortisol, Progesterone, Aldosterone, Testosterone, and maybe

adrenaline. She was also going to test my androgens, so some of the ones I

listed may be androgens. Hope this helps.

----

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

the best test for cortisol tests your levels at 8am, noon, and late at

night. You would improve markedly if you took enough Armour (probably 120

mg) with enough DHEA. I know there are English Docs who know about this.

Have you looked at the UK board at www.thyroid.about.com?

Is England also in the last 8? I haven't seen any soccer on tv.

Gracia

> Hi everybody what blood test s, or tests are prescribe for adrenal

insufficiency. I am of to the Dr this week and I want arm myself with as

many facts as possible.

>

> Just for you information, I was taking 100mcr and 1,25 mcr of synthetic

this produced really bad allergic reaction im my lungs and horrendous hay

fever. something I have never suffered with. Also in the end I got this bad

neck pain so much so I could not turn it when driving and my wrists and

fingers were so painful and full of cramp that I could not open a bottle.

> I was put on Armour but this was like rocket fuel for me and was far too

strong. I have now modified my dose and now take 1/4 of a grain in the

morning and 50 mcr around lunch time. I still wake up with the wrist and

leg cramps but they go about 20 minutes after taking the dose of Armour.

> Some time I get a bit low at night and my brain goes blank I can be

watching TV and my head goes empty and my wife says I go vacant.

> (The lights are on but nobodies at home syndrome) If this happens I take

another 1/8 grain of Armour and in 20 minutes I am back.

>

> This is not ideal but I am wondering if my Adrenal has gone low hence my

intolerance to the synthetic.

> At this moment my eyes are veryt bad and my fingers are stiff and I have

trouble opening bottles but at least I can breath,

> Also Having gone to three drs now they are telling me this is nothing to

do with my Thyroid or lack of the gland.

> Any ideas from the group..

> I am also taking T lymph at night Vit B and Royal Jelly and other

suggestions would be grateful.

>

> Best regards

>

> C Uk

>

> Ps for the Soccer fans we are through to the last 8 and the USA is still

in there. It been great fun but now my TV gone wrong so I am watching it all

on a 14 "

>

>

>

>

> **********************************************************************

> This message may contain information which is confidential or privileged.

> If you are not the intended recipient, please advise the sender

immediately

> by reply e-mail and delete this message and any attachments

> without retaining a copy.

>

> **********************************************************************

>

>

>

>

[Guest guest]

,

You could be having an allergic reaction to the Royal Jelly. Lots of

people are allergic to bee stings, bee pollen, royal jelly, and the

like. Also, have you tried the herb Coleus forskohlii? It can be very

helpful for asthma and other bronchial problems.

Best wishes,

Celeste

Codling, wrote:

> Hi everybody what blood test s, or tests are prescribe for adrenal

insufficiency. I am of to the Dr this week and I want arm myself with

as many facts as possible.

>

> Just for you information, I was taking 100mcr and 1,25 mcr of

synthetic this produced really bad allergic reaction im my lungs and

horrendous hay fever. something I have never suffered with. Also in

the end I got this bad neck pain so much so I could not turn it when

driving and my wrists and fingers were so painful and full of cramp

that I could not open a bottle.

> I was put on Armour but this was like rocket fuel for me and was

far too strong. I have now modified my dose and now take 1/4 of a

grain in the morning and 50 mcr around lunch time. I still wake up

with the wrist and leg cramps but they go about 20 minutes after

taking the dose of Armour.

> Some time I get a bit low at night and my brain goes blank I can be

watching TV and my head goes empty and my wife says I go vacant.

> (The lights are on but nobodies at home syndrome) If this happens I

take another 1/8 grain of Armour and in 20 minutes I am back.

>

> This is not ideal but I am wondering if my Adrenal has gone low

hence my intolerance to the synthetic.

> At this moment my eyes are veryt bad and my fingers are stiff and I

have trouble opening bottles but at least I can breath,

> Also Having gone to three drs now they are telling me this is

nothing to do with my Thyroid or lack of the gland.

> Any ideas from the group..

> I am also taking T lymph at night Vit B and Royal Jelly and other

suggestions would be grateful.

>

[Guest guest]

Dear Debra,

Sorry about the fear he is facing now that the reality of all this has hit home. I know of no books but my suggestion is to tell him there's no promises in life of living a long and healthy one. He just needs to realize the Love he will share with you will last his life time with or with out you alive. No pain no gain. For all you know he could die before you and then you will be alone, but so much happier for what you had time to share. I hope this helps> Love,Teri

suggestions please

Do any of you have suggestions about how I can go about thi? I can't reassure him I will never get sick I go on with life as normal as possible. Being a christian I realize each day might be my last to serve God and try to do my best each day. I also came to hlep start a new congregation here and that is exciting. ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.443 / Virus Database: 248 - Release Date: 1/10/03

[Guest guest]

,

I'm so sorry to hear of your news, but maybe I can offer help. I too, did not tolerate the interferon, and rebetol, after 3 and 1/2 months, I had an acute psychotic episode, as well as difficulty breathing, on several occasions. (ER docs claimed it was severe depression, and panic attacks). My then doc refused to even try the pegasys with reb treatment, so I went to a University in Miami, and have been on the pegasys, and rebitol for 8 days, (2 injections, as of last night). The sides are NOTHING like they were on the previous treatment. I had some itching, some irritability, NO LETHARGY!!!!!!!!!! I have so much energy, I cna't stand myself! I'm cleaning things that I've put off for a year.

Enough bout me, there are docs who care, and the meds are available, even without insurance. Hope this helps keep the spirits high for you......

Lots of prayers will be said for you and family, count on that.

Love

Donna

[Guest guest]

>

> Hello all. I'll keep this short and to the point as I am need of

> suggestions being new to natural healing.

>

> My Candida manifested as uti symptoms although once I started

treating it other symptoms (back aches, moodiness, etc) started

changing for the better as well. It's been about 3 weeks since I

started this regimen and although my overall discomfort in the UT is

better - burning is gone - I still cannot seem to kick this thing.

>Here are the specifics, any suggestions would be greatly

appreciated as I have a three day seminar coming up and will be

" contained " from 8-8pm each day without access to a fridge or

ability to cook myself during the day.

>

> Here is what I am taking, please let me know what you think should

be added / deleted / changed:

>

> I have been drinking 32 ounces of parsley tea each day since

Saturday (today is day 4).

> Garden of Life Probiotics 2x each day (Caryn, I do not recommend

taking these; but you can finish what you have, then buy a simplier

less complex probiotic per the description in my article, or go to

my new website and search for Supplements.)

> Kyolic Garlic capsules 4-6 per day (you probably started on them

too soon; some people must be on the diet much longer before they

can add antifungals other than coconut oil and Pau D'Arco Tea).

> Vitamin C - 2000mg per day (4,000 mg per day is recommended -

review the supplements list again)

> Neem 1 per day (not recommended)

> Grapefruit seed extract 5 drops 2x per day (you only need one

antifungal other than CO and Pau D'Arco, and I do not recommend

taking this; the ones in my article have been researched much more,

much longer and they are more effective, i.e. garlic, oil of oregano

& clove oil - see Articles on them in the Antifungal Folder in the

files or do a search on my new website.

>

> I am in need of a new mutli as I found my old one had fructose in

it.

==>Multis are not good to take because they will be of low quality;

no manufacturer can cram that much into one pill. Take separate

supplements as listed in my article, or see Candida Supplements.

>

> What I am finding in these past two days is that although my

urinary frequency has diminished, I am now seeing a light yeast like

vaginal discharge that was not happening before. I still have the

pressure above my suprapubic bone and my arms and neck are itchy

this morning.

==>Those are die-off symptoms; I suggest you stop taking Kyolic

Garlic and Grapeseed, and ensure your coconut oil intake is 6 tbls.

per day before you add an antifungal. Also start having Pau D'Arco

tea.

>

> Last night I was very warm for a while and after many years of

sleeping with two blankets found myself dropping down to one and

this am feel almost flu like.

==>Flu-like symptoms are definitely die-off symptoms.

>

> Any suggestions would be greatly appreciated as I am VERY new to

natural healing - got frustrated with my MD who called in script

after script for my " UTI " as it did not react to the first anti-

biotic round. The frustration came in that the ones he called in

were ones I had noted I was allergic to in my charts. So off to the

health food store I went and what you see above is the most recent

version of what supplements the health food people suggested I use.

I have to admit they have helped and maybe it's just my impatience

with this, but I really thought that after 3 weeks my body would

> have kicked this thing.

==>Three weeks is definitely not long enough to have no symptoms

whatsoever particularly because your urinary system seems to be

loaded with candida. Please do not rely on health store personnel

for what supplements you should take; see my supplements list which

works together with the diet to provide all your body needs. Your

body will also be re-tracing previous episodes of UTI per Hering's

Law of Cures.

==>The cells in your urinary system also need to be re-built with

good natural saturated fats I recommend, and that can take some time

too.

>

> Bee - I must say a big thank you as I have been reading your

materials and am learning a lot, but the brain fog is a bit

overwhelming right now. I have been able to tie the first onset of

my feeling " icky " back to years of birth control, 10 years of an

eating disorder, and overall poor care of my body which at 36, has

now caught up to me.

==>You are very welcome, but do follow the recommendations

carefully, especially the supplements. Are you also having the

Electrolyte Drink I recommended, which is very important for your

bladder, urinary system and kidneys.

The best to you, Bee

[Guest guest]

Hi Donna,

How about " Mystical JA Day " or something similar maybe using Magical in the

title?

and Kaylee, 5, poly, uveitis, osteopenia and DBD

suggestions please

When I am looking for an idea I know I can count on you guys....In August we

are having a JA Family Fun Day and our theme is Magic. We have a magician who

will be doing an interactive show with the kids and will also do some

instruction, teaching them some tricks to take home as well as giving them a few

items

to take home. One segment is titled, Now You See It, Now you Dont: esteem

building through magic. Now I need a name for the day...to say Family Fun Day

doesnt seem to capture it....any ideas?????

Donna<BR><BR><BR>**************<BR>Ideas to please picky eaters. Watch video on

AOL Living.<BR>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/\

2050827?NCID=aolcmp00300000002598)</HTML>

[Guest guest]

alright keep em coming. We have 4 options now...you guys rock!

Donna<BR><BR><BR>**************<BR>Ideas to please picky eaters. Watch video on

AOL Living.<BR>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/\

2050827?NCID=aolcmp00300000002598)</HTML>

[Guest guest]

How about " The Magical Way we Fight JA "

Val

suggestions please

When I am looking for an idea I know I can count on you guys....In August we

are having a JA Family Fun Day and our theme is Magic. We have a magician who

will be doing an interactive show with the kids and will also do some

instruction, teaching them some tricks to take home as well as giving them a few

items

to take home. One segment is titled, Now You See It, Now you Dont: esteem

building through magic. Now I need a name for the day...to say Family Fun Day

doesnt seem to capture it....any ideas?????

Donna<BR><BR><BR>**************<BR>Ideas to please picky eaters. Watch video on

AOL Living.<BR>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/\

2050827?NCID=aolcmp00300000002598)</HTML>

[Guest guest]

How about: JA Day of Enchantment

Sending prayers & happy thoughts,

Beth :-)

suggestions please

When I am looking for an idea I know I can count on you guys....In August we

are having a JA Family Fun Day and our theme is Magic. We have a magician who

will be doing an interactive show with the kids and will also do some

instruction, teaching them some tricks to take home as well as giving them a few

items

to take home. One segment is titled, Now You See It, Now you Dont: esteem

building through magic. Now I need a name for the day...to say Family Fun Day

doesnt seem to capture it....any ideas?????

Donna<BR><BR> <BR>***** ********* <BR>Ideas to please picky eaters. Watch video

on AOL Living.<BR>

(http://living. aol.com/video/ how-to-please- your-picky- eater/rachel-

campos-duffy/ 2050827?NCID= aolcmp0030000000 2598)</HTML>

[Guest guest]

Oooh Beth, I like it!

Val

Re: suggestions please

How about: JA Day of Enchantment

Sending prayers & happy thoughts,

Beth :-)

suggestions please

When I am looking for an idea I know I can count on you guys....In August we

are having a JA Family Fun Day and our theme is Magic. We have a magician who

will be doing an interactive show with the kids and will also do some

instruction, teaching them some tricks to take home as well as giving them a few

items

to take home. One segment is titled, Now You See It, Now you Dont: esteem

building through magic. Now I need a name for the day...to say Family Fun Day

doesnt seem to capture it....any ideas?????

Donna<BR><BR> <BR>***** ********* <BR>Ideas to please picky eaters. Watch video

on AOL Living.<BR>

(http://living. aol.com/video/ how-to-please- your-picky- eater/rachel-

campos-duffy/ 2050827?NCID= aolcmp0030000000 2598)</HTML>

[Guest guest]

Hi all,

I have been asked by the school districts Superintendent to participate in the

interviewing of the canditates for our new Director of Special Ed. This is a

great opportunity to have a direct impact on the future special ed program in my

sons school. The other participants in the interview process are: the

superintendent of the district, the Middle School principal, a school board

member (who is incedentally a Director of Special Ed for a state Co-operative

Educational Service Association) and me.

Should I get the opportunity to ask any questions I would like to be prepared

and therefore I am looking for some suggestions from you. What would be some

good questions for a potential Director of Special Ed?

If you have any ideas please let me know.

Vickie B

[Guest guest]

I do not know your daughter's skill level but does your daughter have a visual

schedule to know how her day will flow? When my son was in Kindy the teacher had

a schedule above the blackboard for the class to show all the children the

routine for the day. Then he had a small notebook with PEC pictures of the

different pieces of his day (laminated w/velcro). His 1-on-1 would take the

pictures out and place on the front of the book as the day progressed to show

him what was coming up next. Basically, it was to teach him the routine and to

help with transitions. After a while he learned the routine and did the schedule

book on his own and by 2nd grade no longer used it.

Another thing is if they have a technology team to assess your daughter. Maybe

she needs a chair with sides to make her feel secure, a footstool to put her

feet on to feel grounded, a bean bag to keep on her lap to help her weigh

herself down and settle, or a visual timer to show her how long she is to sit

and do an activity and/or show her the time to the next item on the schedule.

They can distract themselves all sorts of ways. Swinging their legs, playing

with pencils, poking other kids, all sorts of things to get attention just like

any kid will do.

Make sure they have modified her work to her needs. Maybe she has a hard time

seeing the lines for tracing letters or numbers. Have them darken the lines so

they are clearer and then she can trace/write. Pencils with grips or the thicker

pencils/markers/crayons, scissors with hand grip so she doesn't have to stick 2

different fingers in a hole. Think of things that will help her with her gross

and small motor skills. Shutting down tends to mean they are frustrated and do

not know how to express/fix the problem so they just plop or stop listening.

Marcia Freeman

From: thebombtexas@...

Date: Sun, 27 Nov 2011 14:44:16 +0000

Subject: Suggestions please

Forgive the cross post if you are also on the Facebook page!

I need some suggestions!! My daughter is in the regular kindergarten classroom.

There is an aide in the class most of the time and she has a 1:1 tutor that

comes in for a few hours every week. She has difficulty sitting and doing her

work. She appears to get fatigued easily andA will just shut down and lay down

and suck her thumb but if it is somethng she wants to do, she jumps up and goes

at it full force. The teacher thinks she is not learning because she will lay

down and turn her head the other way but she comes home and reenacts her day at

school. I have difficulty getting her to sit down and work with me on her

worksheets from school. We have a respite provider that is an education major

and she has even observed her in the classroom as part of her college course and

she has difficulty with her sitting down at home to do it. We go back to ARD/IEP

to review progress next week. I keep thinking they are going to recommend

placement in a self contained classroom because they went really out of theenir

comfort zone to put her in a regular classroom. Please help! It does not help

that I recently went through a divorce with her father and in the process of

buying another house and will be moving soon as well so we have major life

transitions thrown in the mix and her Dad only sees her for a few hours once a

week.