Crosspost - Need help/adived desperately - long

[Guest guest]

Ok, this is very important to me & I am crossposting on this list & another.

This is going to be a long one - my son has been diagnosed with a rare bone

disease called fibrous dysplasia & he is not dong well at all. He's 37 &

very proud which is causing a lot of the problems. This disease causes very

excruciating pain & the bones literally break. He has had a rib removed but

there was nerve damage during the surgery (I personally think they did

something wrong). He can barely walk because of the pain, it affects his

breathing,

causing shortness of breath. Morphine barely touches the pain & there is

concern of addiction. He is suffering from depression, etc. He has been going

in for weekly brurning, steriod injecitons into the nerve area etc out

patient surgery. He says he is giving up & wants to try more natural things,

give

up pain meds., build up his stamina, muscles again & get into better shape

to try & beat this. Now, this is where I am coming to you guys - what king of

eo blends, aromatherapy type blends, lotion, creams, etc. can I come up with

to help with the pain, depression, etc. They are fitting him for a cane &

shoe insert to help alleviate the pressure & giving him a TENS unit. This is

so hard - I am so usde to being the one everyone in the family cmes to to fix

things & I feel so helpless. Any ideas? I know I am rambling but I hope I

am able to get across what I want to do to help. He had even quit smoking

(very heavy smoker) but has started back on that also.

Thank you so much for any help or for just letting me rant~~~

 

 

 

 

God Bless You & Yours,

Georgia (hahagranny)

 

~~~~~~Life is not measured by the number of breaths you take but by the

moments that take your breath away~~~~~~

 

~~~~~A friend hears the song in my heart & sings it to me when

 

my memory fails~~~~~~ Pioneer Girls Leaders'

 

 

 

 

 

 

 

 

 

[Guest guest]

, hahagranny wrote:

>

> Ok, this is very important to me & I am crossposting on this list &

another.

> This is going to be a long one - my son has been diagnosed with a

rare bone

> disease called fibrous dysplasia & he is not dong well at all.

He's 37 &

> very proud which is causing a lot of the problems. This disease

causes very

> excruciating pain & the bones literally break. They are fitting

him for a cane &

> shoe insert to help alleviate the pressure & giving him a TENS

unit. This is

 

>

>

> God Bless You & Yours,

> Georgia (hahagranny)

 

Hi Georgia,

So sorry to hear of your son's challenges. My son developed a strange

bone tumor at 20 mos. One day he was walking fine, the next he looked

like Festus from Gunsmoke, the day after he was using his arms to drag

the lower part of his body behind him. I am a nurse, he was cared for

at a world renowned childrens hospital. Well you have to be an

educated consumer, and get multiple opinions. If not, those wonderful

Docs, like Butch says, Practice Medicine. The most important thing is

to get Docs who specialize in abnormal bone tumors, not your regular

Orthopedic Surgeon. Having an Endocrinologist working with them is

key as a significant number of FD patients also have underlying

hormonal disorders. I didn't let the Docs do half of what they wanted

to do to my son, and even then, they darn near killed him, a long

story, won't go into it. I was able to sift through what was

reasonable, and what was nuts. Between a qualified Ortho doc,

Infectios Disease specialist and an Endocrinologist, we developed a

regimen of bracing, non addictive pain med, supplements including

Calcium, and static MRI to monitor the size of the tumor. This is also

when I started my journey into oils herbs and EO's. My Grandma, I

always knew she was a witch(Good one), made up some vegtable oil with

lavender for my sons back and legs. It worked well for short periods

of time. I have concocted a recipe of my own for aches and pains that

has worked well for him and will post at the end. Your son should get

a total body MRI to make sure his FD is single site VS multiple.I will

try and post a few links that may be helpful. IMO for pain, the TENS

unit will be more helpful than the steroids, one of the side effects

of " roids " is bone loss. The standard medical recommendations for FD

are a combination of Bisphosphonates, and calcium. The

Bisphosphonates are a group of drugs used for Osteoporosis, and come

with a long list of Side effect. A link that might be useful to

understand the drug;

http://courses.washington.edu/bonephys/opbis.html

there is a support Group where you can access information and links on

the web;

http://fibrousdysplasia.org/main.asp?l=2#

 

He would probably benefit from a Calcium supplement, but I would

recommend blood levels of both Calcium, and phosphates before going

willy nilly with the Calcium.

Using Arnica infused oils, and wheat germ oil in a rub, or ingestion,

(once again, refer to more knowledgable folks on oral doses,

Martin..can you help, hope you're feeling better) Any way, lots of

positive Neurophysiological research to support Myelin sheath regrowth

for both of the above. Myelin Sheath covers nerve, and daamage to

same exposes nerve and causes excrutiating pain.

I know Chris, List mom recommends Anyas pain relief oil, and I respect

them both, so I would consider this, otherwise, here's what I use for

my son. Who by the way, is 14 active, full of attitude, plays

Football, (The American kind) and wrestles.

The oils:

Rice Bran 40%

Grape seed 15%

Emu oil 10% Vegans you can forgo this if you like, increase the Wheat

germ to accomodate.

Castor 10%

Wheat Germ oil 10%

Arnica infused Olive oil 10%

Foraha, (Tamanu) 5%

T50 .25%

 

The EO's This is for an 8 oz batch:

Red Thyme 30 gtts

Ravensara 30 gtts

Pettigrain 15gtts

Roman Chamomille 10gtts

Rosemary 15 gtts

Geranium 15 gtts.

Some say I use to little in the way of EO quantity, but I walk on the

cautious side.

My son and his some of his teammates, and their parents love this mix.

I'll be thinking about you and your son,

Regards,

Lynn

[Guest guest]

Georgia,

 

I'll do some research for you. Has he tried going to an acupuncturist for

the pain? Now adays HMO's and PPO's are allowing it,

 

I have a friend who goes to one and wouldn't change anything for the world.

 

Email me privately.

 

----

 

hahagranny

9/30/2006 2:16:37 AM

 

Crosspost - Need help/adived desperately - long

 

Ok, this is very important to me & I am crossposting on this list & another.

 

This is going to be a long one - my son has been diagnosed with a rare bone

disease called fibrous dysplasia & he is not dong well at all. He's 37 &

very proud which is causing a lot of the problems. This disease causes very

excruciating pain & the bones literally break. He has had a rib removed but

there was nerve damage during the surgery (I personally think they did

something wrong). He can barely walk because of the pain, it affects his

breathing,

causing shortness of breath. Morphine barely touches the pain & there is

concern of addiction. He is suffering from depression, etc. He has been

going

in for weekly brurning, steriod injecitons into the nerve area etc out

patient surgery. He says he is giving up & wants to try more natural things,

give

up pain meds., build up his stamina, muscles again & get into better shape

to try & beat this. Now, this is where I am coming to you guys - what king

of

eo blends, aromatherapy type blends, lotion, creams, etc. can I come up with

 

to help with the pain, depression, etc. They are fitting him for a cane &

shoe insert to help alleviate the pressure & giving him a TENS unit. This is

 

so hard - I am so usde to being the one everyone in the family cmes to to

fix

things & I feel so helpless. Any ideas? I know I am rambling but I hope I

am able to get across what I want to do to help. He had even quit smoking

(very heavy smoker) but has started back on that also.

Thank you so much for any help or for just letting me rant~~~

 

 

God Bless You & Yours,

Georgia (hahagranny)

 

~~~~~~Life is not measured by the number of breaths you take but by the

moments that take your breath away~~~~~~

 

~~~~~A friend hears the song in my heart & sings it to me when

 

my memory fails~~~~~~ Pioneer Girls Leaders'

 

 

[Guest guest]

Dear Georgia,

 

What appalling news! I won't recommend anything speciffic but I would

like to address the issue of pain control and addiction. If he is

achieving decent pain control without

unacceptable side effects the pain medicine is working. You are NOT

addicted if you

need your pain medicine on a regular basis to deal with a severe

condition. In the case

of oxcycontin (which my husband was on for pain due to his brain

cancer) the doses

kept having to go up but the pain was being addressed. At this point

you say the person is not showing adictive behaviors anymore than an

insulin dependent diabetic is addicted to insulin. If your son's pain

would reduce, he could be tapered off of the pain medicine. Chronic

pain is such an oppresive condition which affects every aspect of

your existance. There are a lot of options out there for pain

control, depending upon the

detail of your son's condition he may request an onconology referral

for pain control

Best of luck,

 

Carol