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Hey Sammie Mac,

You do have options:

Physical Therapy: Could fix the problem in and of itself or be a

complete waste of time (I did not benefit from PT).

Glucosamine/Chondroitin: Supposed to rebuild cartilage and lubricate

the joints, thus alleviating the cartilage defect problem. Might

help, probably won't. I didn't notice any benefit.

Knee Brace: Takes some of the load off the joint and provides

compression which helps. I use mine when I'm going to be on my feet

for a while and active but it doesn't alleviate any pain. It does

feel better when I remove it though which seems odd.

NSAIDs: Supposed to help by reducing inflammation which is one of the

causes of PFS pain. Only gave me stomach problems, had to stop.

Ice: Reduces swelling and inflammation. Made my knee cold, that's

about it.

Orthotics: Corrects misalignment problems resulting from poor arches

in the feet. Mine seem to help a bit but not enough to make a big

difference (yet).

Acupuncture: Promotes healing by redirecting blood flow to problem

areas. I tried it, determined it wasn't doing anything and stopped.

Chiropractic Adjustment: Activator is supposed to " Shock " the knee

into re-aligning itself. Back adjustments are supposed to help with

problems caused by subluxation which affect the knee. I'm embarassed

I even gave this a try.

Myofacial or Deep Tissue Massage: Haven't tried this. Suppose it

couldn't hurt except in the wallet.

Arthroscopic Surgery: I scheduled mine for Feb. 2nd with one of the

top knee surgeons in the area. I'm optimistic that this will finally

make a difference and get me back on track. No guarantees though but

it's something to hope for.

So you see, there is a lot you can do. Obviously for some, different

treatments work better or worse. Many people suffering from PFS and

CMP improve with conservative treatment (PT, NSAIDS, etc.). Some

only improve after surgery. Others are buggered for life and have to

manage it with lotions and potions.

Good luck,

-JT

>

> Yesterday in fact, was the long awaited result from my MRI scan

(left

> knee).

>

> My Dr told me there was good news & bad news. The good news was no

> serious damage to ligaments, the bad news I have chondromalacia and

> there is nigh on little that can be done.. except take ibuprofen

> (aadvil etc) or similar when it hurts.

>

> I asked him directly if it was arthritis and he said no but it

would

> probably develop.

>

> I looked online and one of the first sites I found said

chondromalacia

> is called osteoarthritis in sufferes over 30 (which I am).

>

> So could somebody please tell me, who is right, me or the doc? Do I

> have osteoarthritis, is the only 'treatment' taking anti-

> inflammotories???

>

> Thank you

>

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JT, you made me laugh today....Thank You. Your message sounded like every

doctors appointment I go to, except after I tell the doc all I tried, he tells

me I am screwed. I hope your surgery goes well!! Although I tried it and it did

nothing for me!!!

Happy Thanksgiving!

jtroc67 <jeff.trockman@...> wrote:

Hey Sammie Mac,

You do have options:

Physical Therapy: Could fix the problem in and of itself or be a

complete waste of time (I did not benefit from PT).

Glucosamine/Chondroitin: Supposed to rebuild cartilage and lubricate

the joints, thus alleviating the cartilage defect problem. Might

help, probably won't. I didn't notice any benefit.

Knee Brace: Takes some of the load off the joint and provides

compression which helps. I use mine when I'm going to be on my feet

for a while and active but it doesn't alleviate any pain. It does

feel better when I remove it though which seems odd.

NSAIDs: Supposed to help by reducing inflammation which is one of the

causes of PFS pain. Only gave me stomach problems, had to stop.

Ice: Reduces swelling and inflammation. Made my knee cold, that's

about it.

Orthotics: Corrects misalignment problems resulting from poor arches

in the feet. Mine seem to help a bit but not enough to make a big

difference (yet).

Acupuncture: Promotes healing by redirecting blood flow to problem

areas. I tried it, determined it wasn't doing anything and stopped.

Chiropractic Adjustment: Activator is supposed to " Shock " the knee

into re-aligning itself. Back adjustments are supposed to help with

problems caused by subluxation which affect the knee. I'm embarassed

I even gave this a try.

Myofacial or Deep Tissue Massage: Haven't tried this. Suppose it

couldn't hurt except in the wallet.

Arthroscopic Surgery: I scheduled mine for Feb. 2nd with one of the

top knee surgeons in the area. I'm optimistic that this will finally

make a difference and get me back on track. No guarantees though but

it's something to hope for.

So you see, there is a lot you can do. Obviously for some, different

treatments work better or worse. Many people suffering from PFS and

CMP improve with conservative treatment (PT, NSAIDS, etc.). Some

only improve after surgery. Others are buggered for life and have to

manage it with lotions and potions.

Good luck,

-JT

>

> Yesterday in fact, was the long awaited result from my MRI scan

(left

> knee).

>

> My Dr told me there was good news & bad news. The good news was no

> serious damage to ligaments, the bad news I have chondromalacia and

> there is nigh on little that can be done.. except take ibuprofen

> (aadvil etc) or similar when it hurts.

>

> I asked him directly if it was arthritis and he said no but it

would

> probably develop.

>

> I looked online and one of the first sites I found said

chondromalacia

> is called osteoarthritis in sufferes over 30 (which I am).

>

> So could somebody please tell me, who is right, me or the doc? Do I

> have osteoarthritis, is the only 'treatment' taking anti-

> inflammotories???

>

> Thank you

>

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JT, great and thorough list!

I would like to say what has helped me.

Ice, definitely. Even if you can't tell if it's helping, ice is helping

with CMP, and is important to do for inflammation. There are some great

PT/sports gel packs you can buy cheaply on the internet for this. They are

MUCH better than what you can find at the local drug store. They are just

like the ones at PT. I have ones called Colpack made by Chattanooga Group.

If your CMP is caused by malignment of the knee, like mine is, a knee brace

that aligns the knee is extremely helpful durinig activities. I got one

from my PT made by Bird & Crown, Inc. It's basically two long strips joined

together at the knee, that you wrap around your knee to correctly align it,

and also provides compression.

PT and exercise to strengthen your quad and other leg muscles will help too.

It may not be " enough, " but it does help and skipping these exercises is

bad for many reasons.

Good luck with everything,

Deb

>From: " jtroc67 " <jeff.trockman@...>

>Reply-chondromalacia treatment

>chondromalacia treatment

>Subject: Re: newly diagnosed

>Date: Tue, 22 Nov 2005 14:39:20 -0000

>

>Hey Sammie Mac,

>

>You do have options:

>

>Physical Therapy: Could fix the problem in and of itself or be a

>complete waste of time (I did not benefit from PT).

>

>Glucosamine/Chondroitin: Supposed to rebuild cartilage and lubricate

>the joints, thus alleviating the cartilage defect problem. Might

>help, probably won't. I didn't notice any benefit.

>

>Knee Brace: Takes some of the load off the joint and provides

>compression which helps. I use mine when I'm going to be on my feet

>for a while and active but it doesn't alleviate any pain. It does

>feel better when I remove it though which seems odd.

>

>NSAIDs: Supposed to help by reducing inflammation which is one of the

>causes of PFS pain. Only gave me stomach problems, had to stop.

>

>Ice: Reduces swelling and inflammation. Made my knee cold, that's

>about it.

>

>Orthotics: Corrects misalignment problems resulting from poor arches

>in the feet. Mine seem to help a bit but not enough to make a big

>difference (yet).

>

>Acupuncture: Promotes healing by redirecting blood flow to problem

>areas. I tried it, determined it wasn't doing anything and stopped.

>

>Chiropractic Adjustment: Activator is supposed to " Shock " the knee

>into re-aligning itself. Back adjustments are supposed to help with

>problems caused by subluxation which affect the knee. I'm embarassed

>I even gave this a try.

>

>Myofacial or Deep Tissue Massage: Haven't tried this. Suppose it

>couldn't hurt except in the wallet.

>

>Arthroscopic Surgery: I scheduled mine for Feb. 2nd with one of the

>top knee surgeons in the area. I'm optimistic that this will finally

>make a difference and get me back on track. No guarantees though but

>it's something to hope for.

>

>So you see, there is a lot you can do. Obviously for some, different

>treatments work better or worse. Many people suffering from PFS and

>CMP improve with conservative treatment (PT, NSAIDS, etc.). Some

>only improve after surgery. Others are buggered for life and have to

>manage it with lotions and potions.

>

>Good luck,

>

>-JT

>

>

>

>

> >

> > Yesterday in fact, was the long awaited result from my MRI scan

>(left

> > knee).

> >

> > My Dr told me there was good news & bad news. The good news was no

> > serious damage to ligaments, the bad news I have chondromalacia and

> > there is nigh on little that can be done.. except take ibuprofen

> > (aadvil etc) or similar when it hurts.

> >

> > I asked him directly if it was arthritis and he said no but it

>would

> > probably develop.

> >

> > I looked online and one of the first sites I found said

>chondromalacia

> > is called osteoarthritis in sufferes over 30 (which I am).

> >

> > So could somebody please tell me, who is right, me or the doc? Do I

> > have osteoarthritis, is the only 'treatment' taking anti-

> > inflammotories???

> >

> > Thank you

> >

>

>

>

>

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Thanks .

I'm sorry you haven't found relief through surgery and otherwise. My

doctor says it's only a 70% chance that I will improve after scope so

I realize it may not help but I have to try!

Good luck with everything,

-JT

> >

> > Yesterday in fact, was the long awaited result from my MRI scan

> (left

> > knee).

> >

> > My Dr told me there was good news & bad news. The good news was

no

> > serious damage to ligaments, the bad news I have chondromalacia

and

> > there is nigh on little that can be done.. except take ibuprofen

> > (aadvil etc) or similar when it hurts.

> >

> > I asked him directly if it was arthritis and he said no but it

> would

> > probably develop.

> >

> > I looked online and one of the first sites I found said

> chondromalacia

> > is called osteoarthritis in sufferes over 30 (which I am).

> >

> > So could somebody please tell me, who is right, me or the doc? Do

I

> > have osteoarthritis, is the only 'treatment' taking anti-

> > inflammotories???

> >

> > Thank you

> >

>

>

>

>

>

>

>

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Please let us know how your surgery goes....beginning of next year I think you

said. I have had increased swelling over the past few weeks, and of course that

has made the pain worse. I am planning on making an appointment with my doc so

he can send me to some kind fo pain management. But, with every doctors

appointment comes the realization that I have no current options for relief, and

that is a frustrating as the pain.

Happy Holidays,

jtroc67 <jeff.trockman@...> wrote:

Thanks .

I'm sorry you haven't found relief through surgery and otherwise. My

doctor says it's only a 70% chance that I will improve after scope so

I realize it may not help but I have to try!

Good luck with everything,

-JT

> >

> > Yesterday in fact, was the long awaited result from my MRI scan

> (left

> > knee).

> >

> > My Dr told me there was good news & bad news. The good news was

no

> > serious damage to ligaments, the bad news I have chondromalacia

and

> > there is nigh on little that can be done.. except take ibuprofen

> > (aadvil etc) or similar when it hurts.

> >

> > I asked him directly if it was arthritis and he said no but it

> would

> > probably develop.

> >

> > I looked online and one of the first sites I found said

> chondromalacia

> > is called osteoarthritis in sufferes over 30 (which I am).

> >

> > So could somebody please tell me, who is right, me or the doc? Do

I

> > have osteoarthritis, is the only 'treatment' taking anti-

> > inflammotories???

> >

> > Thank you

> >

>

>

>

>

>

>

>

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  • 3 months later...
Guest guest

Nate, welcome to the group. Your doctor gave you the run down of the treatments for this disease. Aurgery is the best option for people that have this disease unless you would not be able to handle surgery. This is a progressive disease and if left untreated can be life threatening. There is no known reason why we get this disease as far as I know. The disease effects the Vagus nerve and that nerve controls the E. I have not taken any alteritive methodes to help me with this. I have had the surgery and I am very glad I have. I would suggest you find a sergeon that has delt with the disease and has done the surgery before if you decied to go that route. We are here to support you and some have strong convitction on how you should get this taken care of. Remember you have to make a decision that you feel best with.

Once again welcome to the group adn if you have any other questions please feel free to ask. Look over the group site really well. There is a lot of information there.

in Suffolk

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Guest guest

Hi Nate,

Welcome to the group! I hope you find this family as a source of

support and information - that's what its around for!

> 1) Is there any commonality of source of this condition amongst us?

I have been chronically a quick eater and maybe rapid swallowing

without an interval messes up the muscles of esophogus?

There is no commonality among us that we have figured out. We're

just those lucky 1 in 100,000!

> 2) I have been seeing (for past 2 weeks) a naturopath, who a)claims

that almost all diseases result from body being too acidic from

american diet and b)claims that nerves can be regenerated if body is

more alkaline and taking certain supplements - she has never heard of

achalasia but has cured double digit people of cancer and other

diseases. My father is a doctor (ortho) and claims that nerves DO

regenerate, but only within 18 months of them 'dying' - any thoughts

here?

Personally, I am not " into " the natural treatment of achalasia. I

trusted my surgeon 100% when he suggested the heller with partial

funduplication, and stuck with that train.

> 3) has this group extensively looked at alternative methods to

treatment - my doctor basically told me a)botox, b)dilation c) heller

and kicked me out of his office - i think chinese and other methods

may be underlooked at - I already feel worlds better eating less meat

and more veggies and drinking alkaline water, etc. what about

acupuncture? My doctor (who I have less and less respect for) said

there is no example in history of esophogeal motility coming back,

once lost.

>

> 4) why do I get the feeling that there are in fact more than 2000

people per year diagnosed with this? what is the common causality, in

our world of excess?

>

> 5) In your (more experienced) opinion, am I better off gettig the

myotomy soon (given the risk of my esopogus taking up half my chest

cavity) or waiting until furhter advancements or naturopathic

remedies are given a chance.

Yes, you are better having your surgery sooner than later. The

longer you wait, the higher the chances are of your esophogus

stretching, and your symptoms getting worse. There is no cure for

achalasia, only ways to treat the symptoms.

There are over 1000 members of this group, and there is always

someone around to answer your question, so ask away. Good luck!

Hugs,

in BC

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  • 2 months later...
Guest guest

Hi ,

Welcome to the group! I know how it feels when you're just starting

on this OCD ride, and start reading all the posts here. It can be

VERY scary to see what some are going through. But no, that does not

mean your son is headed down that road. OCD comes in so many

different forms, and things (symptoms) can change quickly, but there

are many out there whose OCD stays mild and in the background. Even

those who get severe can get incredible results from proper therapy

(which it sounds like your son is getting). Also, by all accounts, the

earlier the therapy is received, the prognosis for a " normal " life is

extremely likely.

I wouldn't worry about Ben gaining compulsions by reading or talking

about that. I used to think that as well, but with OCD having no

logic, our kids seem to shrug off others' symptoms. My daughter read

" Up and Down the Worry Hill " and thought the boys thoughts/compulsions

in the book were quite silly. She has heard of many kids' problems

from this site, since at times I share posts with her to see if she

had any ideas on how to help. She has much empathy for what someone

is going through, but cannot understand why so-and-so does this or

that vs. what she does.

Good luck with everything and know that you are not alone -

nna.

NY

>

> Hi everyone,

> I've been on this board for about two weeks, just reading all of

your stories. It just breaks my heart to hear all you are going

through, and it scared me quite a bit, but the bright spots give me

hope. You are all so strong and courageous. Here is a bit of our story.

>

> My son Ben, just turned 7..

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Guest guest

Thank you, nna. He has been very curious about OCD in other children. He

told me a few nights ago that he was going to talk to Santa (yes, he still truly

believes) about taking away his OCD and taking OCD away from all kids who have

it. He said that if he could hold on until Christmas, Santa would fix it. Then

he asked me if Santa could really do that, and that would be the best gift. I

told him that didn't think Santa could do that. Then I started to cry, which I

do a lot. He just patted my head and said " oh, mom, don't cry again. I'm fine. "

He is also trying to guess who else he knows who might have it. A few adults we

know have shared that they have it as well, since we've found out about Ben.

Some close friends who we didn't know. Lately he's been telling everyone we

meet that he has OCD and can't watch scary or violent movies.

He really liked the boy in the Mr. Worry book. was a lot like him. Not

many compulsions, but bad thoughts. He felt better knowing it wasn't just him.

J

Re: newly diagnosed

Hi ,

Welcome to the group! I know how it feels when you're just starting

on this OCD ride, and start reading all the posts here. It can be

VERY scary to see what some are going through. But no, that does not

mean your son is headed down that road. OCD comes in so many

different forms, and things (symptoms) can change quickly, but there

are many out there whose OCD stays mild and in the background. Even

those who get severe can get incredible results from proper therapy

(which it sounds like your son is getting). Also, by all accounts, the

earlier the therapy is received, the prognosis for a " normal " life is

extremely likely.

I wouldn't worry about Ben gaining compulsions by reading or talking

about that. I used to think that as well, but with OCD having no

logic, our kids seem to shrug off others' symptoms. My daughter read

" Up and Down the Worry Hill " and thought the boys thoughts/compulsions

in the book were quite silly. She has heard of many kids' problems

from this site, since at times I share posts with her to see if she

had any ideas on how to help. She has much empathy for what someone

is going through, but cannot understand why so-and-so does this or

that vs. what she does.

Good luck with everything and know that you are not alone -

nna.

NY

>

> Hi everyone,

> I've been on this board for about two weeks, just reading all of

your stories. It just breaks my heart to hear all you are going

through, and it scared me quite a bit, but the bright spots give me

hope. You are all so strong and courageous. Here is a bit of our story.

>

> My son Ben, just turned 7..

Our list archives, bookmarks, files, and chat feature may be accessed at:

/ .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D., (

http://www.lighthouse-press.com ). Our list moderators are Birkhan,

Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail

Pesses, and Kathy . Subscription issues or suggestions may be

addressed to Louis Harkins, list owner, at louisharkins@... ,

louisharkins@... , louisharkins@... .

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Guest guest

Hi , welcome! I'm single mom to , 17, who has

OCD. He also has diagnoses of dysgraphia and Aspergers Syndrome (on

the autism spectrum). I have 2 others son also; a twin to

(not identical) and then my oldest is 21.

's OC disorder began in 6th grade. And I wrote out " disorder "

as he had some OCD tendencies/behaviors before that, but they were

minor, nothing like the 24/7 compulsions that arrived suddenly in 6th

grade.

The rest of us in the family have our OC tendencies too. I think

just was the unlucky one who had it develop into a full-blown

disorder.

Well, Ben is very lucky to have a therapist who understands OCD and

he's making progress! Really, the tools she is teaching him right

now will be ones he can use throughout his life. So he's on a good

path now! He may still have days that seem like he's taken 2 steps

back but OCD does wax/wane and can increase due to stress or even

excitement, so there may be some ups/downs but he'll bounce back with

his progress. And I know in some cases it seems like " defeat one

thing and more pop up " but that's also normal/common and progress

still seems to come a bit faster once they have managed to boss

back/defeat a thought, ritual/compulsion, etc.

Once conquered a couple things, it seemed like some others

just disappeared or were much easier to work on, even new ones that

popped up.

I know I sometimes have worried about not wanting to mention

something to that might give his OCD a new idea/trigger but

apparently OCD *luckily* doesn't work that way. So hearing/reading

about others' O's and C's shouldn't start something new. And it is

helpful to know that others (kids and adults) have it and you are not

alone!

Well, wanted to welcome you and please keep us updated on how Ben and

you all are doing!

>

> Hi everyone,

> I've been on this board for about two weeks, just reading all of

your stories. It just breaks my heart to hear all you are going

through, and it scared me quite a bit, but the bright spots give me

hope. You are all so strong and courageous. Here is a bit of our

story.

>

> My son Ben, just turned 7.. He had talked about bad thoughts last

year, and they went away. We tend to put a time limit on things and

say " if by this date_____, things are not better, we will seek help " .

Well, it must have come and gone and we chalked it up to a

developmental stage or something. He wasn't very specific about them.

He is a very verbal child and has always been great about expressing

his feelings. We made every effort to always help him express

himself, and never encouraged him to suppress his feelings.

>

> Well, a few months ago, the bad thoughts returned. Initially, we

blamed it on a bad babysitting experience at a friend's house. He saw

his friend's dad slap his friend across the face. This really

frightened him, we have never spanked him so he was very disturbed by

it all. The bad thoughts began a few days later. With lots of

crying, clinging, hysterical. Then as time went on, we started to

become more concerned. And started researching ocd. At first, it

seemed like PANDAS. It was sudden and had many of the other symptoms

like Pandas. But, we were disappointed to find that he has never had

strep, that sounds so strange to say, the nurse was surprised that we

were disappointed about it. It was real OCD, not pandas.

>

> Things started to fit together more as we look back. Odd things he

would say and do. ie. --My shoes have " clowny-knots " and then a total

meltdown about big knots in shoes. --Insistence on handwashing-only

once though, but insistent. --asking if food was fresh at 4 years

old. --asking me if I was going to kiss different guys we would see ,

mechanics, store clerks etc...(that one puzzled me) -- but, not an

need for order or things just so, a very sloppy kid, messy room

etc... He ahs also always had so much separation anxiety, doesn't

want to be without us.

>

> Anyhow, fast forward to now. We are seeing a great therapist and

she is helping him so much. He just seems for now to have the bad

thoughts and he is able to ignore or change them to something else.

We've seen her once a week for a month and she is wonderful, and she

has great toys in her office according to Ben.

>

> I am a little worried reading about how far ocd can go. I'm

wondering if it has to go that far. We caught it pretty early and his

therapist says that she feels good about his prognosis for a fairly

normal life. We homeschool, always have and probably always will,

that was our plan already, so it seems like an even better idea now.

He still sleeps with us and that works out well since he has trouble

falling asleep and awakens with nightmares and bad thoughts. He has

since he came home from the hospital. So, we really haven't changed

too much in light of everything.

>

> We are now just educating ourselves, trying to recover and get back

to the new normal. It's been hard, but after reading about some of

what you all have been through, we are lucky. Lucky, but cautious.

Since you never know what comes next, right?

>

> I've gotten a few books for him and for us, but have only read him

Mr. Worry. The other children's books seem to deal a lot with

compulsions, and since he does yet have those, we didn't want to

plant any seeds. If that is even possible. I have a few reference

books for us that have been helpful.

>

> Thanks for being such a supportive group. I've found your postings

to be informative and very supportive of each other. Its good to

know it's here if we need it. Thanks,

>

> mom to Ben age 7

>

>

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Guest guest

Welcome and I know educating ourselves is a good thing. Keep learning and

reading and I hope things go well for you.

Cheers Jaxx (New Zealand)

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Guest guest

Welcome and I know educating ourselves is a good thing. Keep learning and

reading and I hope things go well for you.

Cheers Jaxx (New Zealand)

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Guest guest

>

>

> I wouldn't worry about Ben gaining compulsions by reading or talking

> about that. I used to think that as well, but with OCD having no

> logic, our kids seem to shrug off others' symptoms. My daughter read

> " Up and Down the Worry Hill " and thought the boys thoughts/compulsions

> in the book were quite silly. She has heard of many kids' problems

> from this site, since at times I share posts with her to see if she

> had any ideas on how to help. She has much empathy for what someone

> is going through, but cannot understand why so-and-so does this or

> that vs. what she does.

>

>

My daughter is this way as well. Can't understand anyone else that I

tell her about on this list. She even laughs. But she CAN'T make the

same logical leap to her own vomiting issues. It's so frustrating!

But, she's never added a compulsion or worry because she read about it

or heard about it.

Dina

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Guest guest

>

>

> I wouldn't worry about Ben gaining compulsions by reading or talking

> about that. I used to think that as well, but with OCD having no

> logic, our kids seem to shrug off others' symptoms. My daughter read

> " Up and Down the Worry Hill " and thought the boys thoughts/compulsions

> in the book were quite silly. She has heard of many kids' problems

> from this site, since at times I share posts with her to see if she

> had any ideas on how to help. She has much empathy for what someone

> is going through, but cannot understand why so-and-so does this or

> that vs. what she does.

>

>

My daughter is this way as well. Can't understand anyone else that I

tell her about on this list. She even laughs. But she CAN'T make the

same logical leap to her own vomiting issues. It's so frustrating!

But, she's never added a compulsion or worry because she read about it

or heard about it.

Dina

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In a message dated 6/4/2006 2:23:52 P.M. Eastern Standard Time,

lauraj2@... writes:

He said that if he could hold on until Christmas, Santa would fix it.

-

Holy cow... that is the SWEETEST thing I've ever heard. What a sweetie-pie

your little boy must be! You mentioned there are adults you know whom you

just recently found out have OCD as well -- has you son had the opportunity to

sit & talk to them about it? Little kids are so forthcoming & open - it's so

healthy. I wish my daughter would open up & talk to other people about her

OCD.

We have managed to convince her to tell her grandma (my mom) about it,

because she was just here visiting from CA for 2 weeks in May. I'm now going

to

work on her to tell her other grandparents (my in-laws) who will be staying

with us for a week in July. We see them often because they are only 4 hours

away in NC.... it would be REALLY helpful if we could be open with them about

it. My father-in-law is a retired psychologist ( I think I've mentioned that

on the board before....) but he has no OCD experience. Still...... I can't

imagine he wouldn't be helpful in some ways.

LT

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In a message dated 6/4/2006 2:23:52 P.M. Eastern Standard Time,

lauraj2@... writes:

He said that if he could hold on until Christmas, Santa would fix it.

-

Holy cow... that is the SWEETEST thing I've ever heard. What a sweetie-pie

your little boy must be! You mentioned there are adults you know whom you

just recently found out have OCD as well -- has you son had the opportunity to

sit & talk to them about it? Little kids are so forthcoming & open - it's so

healthy. I wish my daughter would open up & talk to other people about her

OCD.

We have managed to convince her to tell her grandma (my mom) about it,

because she was just here visiting from CA for 2 weeks in May. I'm now going

to

work on her to tell her other grandparents (my in-laws) who will be staying

with us for a week in July. We see them often because they are only 4 hours

away in NC.... it would be REALLY helpful if we could be open with them about

it. My father-in-law is a retired psychologist ( I think I've mentioned that

on the board before....) but he has no OCD experience. Still...... I can't

imagine he wouldn't be helpful in some ways.

LT

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  • 2 months later...

My understanding from my doctor at Children's when he tried Sami on the

prednisone was that was the final test to verify that she had . If she

responded and her fevers disappeared, then they were right to dianose her. If,

not we needed to dig further. Maybe I'm wrong, but maybe you need to look

further for another diagnosis.

Trish

" amy.leary " <raleary@...> wrote:

HI,

My 2 1/2 year old daughter was diagnosed with last month at

almost a year of fevers. SO after 24 days her fevers came back and I

started her on prednisone, 3 days later and she still having her

fevers. I am so frusterated!!!! I am thinking of contacting an ears,

nose and throat Doctor and have him evaluate her to see if he would

take her tonsils out. Can someone please let me know if there child

has had this procedure done and how many kids have stoped having the

fevers since having their tonsils removed.

Thank you,

Amy

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

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Trish,

Thanks for that Information. I am going to call my pediatrician and

ask him that question. Her tonsils are always red when she goes

through these spells and her breath stinks!! I feel so bad for her

she's always sick!!

Thanks again,

Amy

> HI,

> My 2 1/2 year old daughter was diagnosed with last month at

> almost a year of fevers. SO after 24 days her fevers came back and

I

> started her on prednisone, 3 days later and she still having her

> fevers. I am so frusterated!!!! I am thinking of contacting an

ears,

> nose and throat Doctor and have him evaluate her to see if he

would

> take her tonsils out. Can someone please let me know if there

child

> has had this procedure done and how many kids have stoped having

the

> fevers since having their tonsils removed.

>

> Thank you,

> Amy

>

>

>

>

>

>

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

> All-new - Fire up a more powerful email and get

things done faster.

>

>

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I know how frustrating it is, we all do! Each time she has a fever I just hope

this is the last time, I can't wait for the day I'm right!

Trish

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

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I know I have 4 girls and the 3 older one's all have all caught something

strange and ended up in the hospital. Just when I was thinking, at least I have

one healthy one that hasn't caused me any problems...Sami comes down with this

. So knock on wood!!!

Trish

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

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I am knocking for all of us!!!! AGHHHH..

>

>

> I know I have 4 girls and the 3 older one's all have all

caught something strange and ended up in the hospital. Just when I

was thinking, at least I have one healthy one that hasn't caused me

any problems...Sami comes down with this . So knock on wood!!!

> Trish

>

>

>

>

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

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

>

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  • 6 months later...
Guest guest

Where are you getting the pop jackets applied? Where do you live? How old is

your son? What are his measurements? I spent a lot of time talking to our

insurance company and was able to make great strides, too much to write about

here. If you would like to chat, e-mail me privately with your number and the

best time to call.

Jen

http://www.infantilescoliosis.org/madisons_story.htm

coolesttwinkie wrote:

Hi my name is Rochelle, we recently found out that our son has

infantile scoliosis and chiari malformation. He will recieve his first

POP jacket on April 18th. We have found out that the insurance is going

to charge us a 500.00 dollar copay everytime he goes in for a new cast.

We are trying to find some sort of help in covering his medical

expenses. At this point we don't know where to start. Does anybody have

any suggestions.Thanks.

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

Be a PS3 game guru.

Get your game face on with the latest PS3 news and previews at Games.

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Guest guest

Hi Rochelle,

Where are you taking you taking your son for casting? Shriners Hospital is

completely free!

coolesttwinkie wrote:

Hi my name is Rochelle, we recently found out that our son has

infantile scoliosis and chiari malformation. He will recieve his first

POP jacket on April 18th. We have found out that the insurance is going

to charge us a 500.00 dollar copay everytime he goes in for a new cast.

We are trying to find some sort of help in covering his medical

expenses. At this point we don't know where to start. Does anybody have

any suggestions.Thanks.

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

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Hi Rochelle,

Here is a good site for chiari questions: www.asap.org. The doctor we see

is on the board here. His name is arnold menezes and he is at the U of Iowa

(we travel to see him as do many others.) He is top in his field. My

daughter has not developed chiari as of yet but she has a very rare anomalie

of the cervical spine making it unstable. Here is another group on

devoted to parents who have children with chiari

http://health./group/wacmaparents/

Sorry I couldn't answer the question about insurance.

best.

mary

newly diagnosed

Hi my name is Rochelle, we recently found out that our son has

infantile scoliosis and chiari malformation. He will recieve his first

POP jacket on April 18th. We have found out that the insurance is going

to charge us a 500.00 dollar copay everytime he goes in for a new cast.

We are trying to find some sort of help in covering his medical

expenses. At this point we don't know where to start. Does anybody have

any suggestions.Thanks.

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Yikes. That is a lot of money!! Shriners in Salt Lake City and the one in

Erie, PA do the casting for free. They also offer free housing and there are

places that can help with transportation as well if that is an issue.

Noelle (12-2-01)

Ian (8-15-04)

newly diagnosed

Hi my name is Rochelle, we recently found out that our son has

infantile scoliosis and chiari malformation. He will recieve his first

POP jacket on April 18th. We have found out that the insurance is going

to charge us a 500.00 dollar copay everytime he goes in for a new cast.

We are trying to find some sort of help in covering his medical

expenses. At this point we don't know where to start. Does anybody have

any suggestions.Thanks.

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