Re: Re: Update on my daughter's appt w/local MD....now Medical Cannabis

March 29, 2011

This is a typical response from a doc who doesnt work with medical cannabis.

Most pain patients use vaporizers, elixersÂ or edibles to negate the effects of

smoking (not all, there are people that just like to smoke) As for helping with

our type of nerve pain, it has helped many people with MS nerve pain,

Fibromyalgia nerve pain,Â ALS nerve pain, neuropathy, traumatic brain injury

nerve pain and most importantly SCI nerve pain so again...typical response from

a doc that relies on pharmaceutical reps to tell him what works for people and

has stereotypical ideas of marijuana. Just as there are misconceptions about

pain patients and narcotics there is even more surrounding cannabis. It is true

that it doesnt totally take the pain " away " , nothing does...but people report

that it puts a space between them and the pain, enough to function in a

comfortable way (not to mention relief from muscle spasms, its anti-inflamatory

propertiesÂ and actually being able to sleep at night which makes a HUGE

difference in pain levels). Many patients have been able to return to work and

to the activities they loveÂ after years of incapacitating pain. They describe

it

as being an observer of the pain, they know the pain is there but it isnt all

consuming and no longer limits their ability to perform physically. As Kathy

stated about narcotics, those who have been stabilized on it claim that it

doesnt even affect their cognitive skills in fact one fellow has been a

successful stock broker for over 20 years handling millions of dollars in

investments. Personally, I will still say there are positions best left to the

unmedicated, whether it be narcotics or medical cannabis, but that is my own

personal opinion.

I am not saying it is the right thing for everyone but tens of thousands of

people have gotten their lives back using it responsibly so please dont dismiss

it so easily. It is serious medicine. My friend is going through chemotherapy

right now for breast cancer, she also has crohns and fibromyalgia. You cannot

even imagine how sick this has made her. It is the only thing that helps her,

the only thing. It is the only thing that stops the vomiting, helps the pain,

allows her to eat etc etc. It is a DAMN SHAME and a human rights violation as

far as I'm concerned for our government to tell a dying woman that she can have

all the damn heart rate/respiratory rate/bowel motility slowing, liver/kidney

damaging drugs that she wants but if she uses the one thing that gives her a

moment of relief or allows her to eat one morsal of food without puking she can

go to jail? It is inhumane. God forbid that someone could grow their own

medicine and not have to pay hundreds of dollars for their meds every month,

then add another hundred for meds to counteract the side effects of the first

meds. I call BS.Â Â Â

________________________________

To: tetheredspinalcord

Sent: Mon, March 28, 2011 2:52:40 PM

Subject: Re: Update on my daughter's appt w/local MD....

Â

Regarding medical marijuana: my sister (a nurse) joked about asking the Dr.

about it. So I did. He said " it wouldn't help the type of nerve pain you have

and the secondary effects (smoking) would only cause other medical problems " . He

didn't say it but lung cancer, perhaps?

Jodi

March 29, 2011

*,*

**

*I just want to thank you for telling me about medical cannabis. I am making

a folder of ALL the possible pain medications and their pros and cons. I am

making this folder for when my son is a grown man and will most likely have

chronic pain. He is only 10 right now, but he has a tethered cord which

cannot be detethered all the way due to the fact that it is was severely

intertwined in a lipoma with a bunch of live nerve roots. His neuro that

detethered him when he was 5 yrs. old said it was the worst case of TC he

had ever seen and that he simply could not safely detether him wothout my

son losing major loss of functions, including walking. I also had the same

second opinion by Dr. Fuchs at Duke. They both said if the pain got

unbearable, they could " try and debulk him again, and relieve a little

pressure but not detether all the way " . My son also has a 4mm Chiari.*

**

*Anyway, my son already suffers from mild to moderate pain on a daily basis.

I am already seeing an increase in his pain levels in his legs, knees, feet,

and back as he is growing taller. right now his pain is relieved with

Ibuprofen, and he has a prescription for tylenol with codeine. There have

been a couple times recently where those meds will not relieve his pain at

all, and he just cries in agony. I have a feeling that my son is going to

have a lifetime of chronic nerve pain, as many of the adults do that I read

about on this site.*

**

*I asked his neurosurgeons nurse on the phone, and pediatrician for

something specifically for nerve pain, and they both said all he could take

is ibuprofen. He is scheduled to have an MRI on April 7th to see if his

Chiari is worse , or he has developed a syrinx, and to look at the TC to see

if that is why his pain is increasing. I am going to ask his neuro again (

in person) when we go in for the results about meds for children with nerve

pain.*

**

*I am NOT going to ask about medical cannabis for my child. I am just

thanking you for letting me know that is an option maybe to be considered

when my son is a grown man, if nothing else is working, or if years of

traditional pain meds have damaged his kidneys or liver. *

**

*

On Tue, Mar 29, 2011 at 1:10 AM, wrote:

>

> This is a typical response from a doc who doesnt work with medical

> cannabis.

> Most pain patients use vaporizers, elixers or edibles to negate the effects

> of

> smoking (not all, there are people that just like to smoke) As for helping

> with

> our type of nerve pain, it has helped many people with MS nerve pain,

> Fibromyalgia nerve pain, ALS nerve pain, neuropathy, traumatic brain injury

>

> nerve pain and most importantly SCI nerve pain so again...typical response

> from

> a doc that relies on pharmaceutical reps to tell him what works for people

> and

> has stereotypical ideas of marijuana. Just as there are misconceptions

> about

> pain patients and narcotics there is even more surrounding cannabis. It is

> true

> that it doesnt totally take the pain " away " , nothing does...but people

> report

> that it puts a space between them and the pain, enough to function in a

> comfortable way (not to mention relief from muscle spasms, its

> anti-inflamatory

> properties and actually being able to sleep at night which makes a HUGE

> difference in pain levels). Many patients have been able to return to work

> and

> to the activities they love after years of incapacitating pain. They

> describe it

> as being an observer of the pain, they know the pain is there but it isnt

> all

> consuming and no longer limits their ability to perform physically. As

> Kathy

> stated about narcotics, those who have been stabilized on it claim that it

> doesnt even affect their cognitive skills in fact one fellow has been a

> successful stock broker for over 20 years handling millions of dollars in

> investments. Personally, I will still say there are positions best left to

> the

> unmedicated, whether it be narcotics or medical cannabis, but that is my

> own

> personal opinion.

> I am not saying it is the right thing for everyone but tens of thousands of

>

> people have gotten their lives back using it responsibly so please dont

> dismiss

> it so easily. It is serious medicine. My friend is going through

> chemotherapy

> right now for breast cancer, she also has crohns and fibromyalgia. You

> cannot

> even imagine how sick this has made her. It is the only thing that helps

> her,

> the only thing. It is the only thing that stops the vomiting, helps the

> pain,

> allows her to eat etc etc. It is a DAMN SHAME and a human rights violation

> as

> far as I'm concerned for our government to tell a dying woman that she can

> have

> all the damn heart rate/respiratory rate/bowel motility slowing,

> liver/kidney

> damaging drugs that she wants but if she uses the one thing that gives her

> a

> moment of relief or allows her to eat one morsal of food without puking she

> can

> go to jail? It is inhumane. God forbid that someone could grow their own

> medicine and not have to pay hundreds of dollars for their meds every

> month,

> then add another hundred for meds to counteract the side effects of the

> first

> meds. I call BS.

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Mon, March 28, 2011 2:52:40 PM

> Subject: Re: Update on my daughter's appt w/local MD....

>

> Regarding medical marijuana: my sister (a nurse) joked about asking the Dr.

>

> about it. So I did. He said " it wouldn't help the type of nerve pain you

> have

> and the secondary effects (smoking) would only cause other medical

> problems " . He

>

> didn't say it but lung cancer, perhaps?

>

> Jodi

>

March 29, 2011

,

I wonder why they will not Rx him something for neuropathy. Ibuprofen is not

known for treating it. There are tons of different meds that can be used,

most of which can be Rx to children.

Sent from my iPhone

**

*I asked his neurosurgeons nurse on the phone, and pediatrician for

something specifically for nerve pain, and they both said all he could take

is ibuprofen. He is scheduled to have an MRI on April 7th to see if his

Chiari is worse , or he has developed a syrinx, and to look at the TC to see

if that is why his pain is increasing. I am going to ask his neuro again (

in person) when we go in for the results about meds for children with nerve

pain.*

**

*

March 29, 2011

*,*

*The Neuro's nurse said that the Dr probably would prescribe something else,

he just wants to wait until after he gets the results of my son's MRI . His

MRI is April 7th, then the folllow up appt. to get the results is April 21.

My sons pain has always been relieved by ibuprofen and rest, and he has only

had to take it a couple times a week. It is only recently that the pain is

getting worse and not being relieved with ibuprofen.*

*What are the names of the meds that can be used on children?? I want to

know the names so I can ask the Dr.*

**

*thanks,*

*

>

> ,

>

> I wonder why they will not Rx him something for neuropathy. Ibuprofen is

> not

> known for treating it. There are tons of different meds that can be used,

> most of which can be Rx to children.

>

> Sent from my iPhone

>

> **

> *I asked his neurosurgeons nurse on the phone, and pediatrician for

>

> something specifically for nerve pain, and they both said all he could take

> is ibuprofen. He is scheduled to have an MRI on April 7th to see if his

> Chiari is worse , or he has developed a syrinx, and to look at the TC to

> see

> if that is why his pain is increasing. I am going to ask his neuro again (

> in person) when we go in for the results about meds for children with nerve

> pain.*

> **

>

> *

>

> *

>

March 29, 2011

,

I don't know the names of all of them, but most Rx to treat neuropathy are

anti-convulsants, and there are a lot of children with epilepsy and all

those meds used to treat their epilepsy can pretty much be used to treat

neuropathy (except dilantin and the barbiturates). I found a list of

pediatric anti-convulsants, and these are the ones that I know can be used

to treat neuropathy (not necessarily inclusive list).

- Carbamazepine (Tegretol, Carbatrol)

- Gabapentin (Neurontin)

- Levetiracetam (Keppra)

- Pregabalin (Lyrica)

- Tiagabine (Gabitril)

- Topiramate (Topamax)

- Valproate / Valproic acid (Depakote, Depakene)

There are also antidepressants that kids can take and I'm sure a number of

them are the same ones that adults can take to treat neuropathy. All I can

suggest is to Google it and see if you can find an inclusive list of

pediatric Rx for neuropathy. Or Google pediatric Rx anti-convulsants and

anti-depressants. Then look up Rx for neuropathy and see which ones overlap.

Jenn

> *,*

> *The Neuro's nurse said that the Dr probably would prescribe something

> else,

> he just wants to wait until after he gets the results of my son's MRI . His

> MRI is April 7th, then the folllow up appt. to get the results is April 21.

> My sons pain has always been relieved by ibuprofen and rest, and he has

> only

> had to take it a couple times a week. It is only recently that the pain is

> getting worse and not being relieved with ibuprofen.*

> *What are the names of the meds that can be used on children?? I want to

> know the names so I can ask the Dr.*

> **

> *thanks,*

> *

>

> *

>

> >

> > ,

> >

> > I wonder why they will not Rx him something for neuropathy. Ibuprofen is

> > not

> > known for treating it. There are tons of different meds that can be used,

> > most of which can be Rx to children.

> >

> > Sent from my iPhone

> >

> > **

> > *I asked his neurosurgeons nurse on the phone, and pediatrician for

> >

> > something specifically for nerve pain, and they both said all he could

> take

> > is ibuprofen. He is scheduled to have an MRI on April 7th to see if his

> > Chiari is worse , or he has developed a syrinx, and to look at the TC to

> > see

> > if that is why his pain is increasing. I am going to ask his neuro again

> (

> > in person) when we go in for the results about meds for children with

> nerve

> > pain.*

> > **

> >

> > *

> >

> > *

> >

March 29, 2011

*Thank you so much Jenn. I had made a post about 2 weeks ago asking other

parents what meds their kids were on for pain, and if their kids experienced

any side effects, but I only got one response. ( was for neurotonin).I will

look into these other meds.*

**

*carrie

*

>

> ,

>

> I don't know the names of all of them, but most Rx to treat neuropathy are

> anti-convulsants, and there are a lot of children with epilepsy and all

> those meds used to treat their epilepsy can pretty much be used to treat

> neuropathy (except dilantin and the barbiturates). I found a list of

> pediatric anti-convulsants, and these are the ones that I know can be used

> to treat neuropathy (not necessarily inclusive list).

>

> - Carbamazepine (Tegretol, Carbatrol)

> - Gabapentin (Neurontin)

> - Levetiracetam (Keppra)

> - Pregabalin (Lyrica)

> - Tiagabine (Gabitril)

> - Topiramate (Topamax)

> - Valproate / Valproic acid (Depakote, Depakene)

>

> There are also antidepressants that kids can take and I'm sure a number of

> them are the same ones that adults can take to treat neuropathy. All I can

> suggest is to Google it and see if you can find an inclusive list of

> pediatric Rx for neuropathy. Or Google pediatric Rx anti-convulsants and

> anti-depressants. Then look up Rx for neuropathy and see which ones

> overlap.

>

> Jenn

>

> > *,*

>

> > *The Neuro's nurse said that the Dr probably would prescribe something

> > else,

> > he just wants to wait until after he gets the results of my son's MRI .

> His

> > MRI is April 7th, then the folllow up appt. to get the results is April

> 21.

> > My sons pain has always been relieved by ibuprofen and rest, and he has

> > only

> > had to take it a couple times a week. It is only recently that the pain

> is

> > getting worse and not being relieved with ibuprofen.*

> > *What are the names of the meds that can be used on children?? I want to

> > know the names so I can ask the Dr.*

> > **

> > *thanks,*

> > *

> >

> > *

> > On Tue, Mar 29, 2011 at 3:25 AM, Bobin

> wrote:

> >

> > >

> > > ,

> > >

> > > I wonder why they will not Rx him something for neuropathy. Ibuprofen

> is

> > > not

> > > known for treating it. There are tons of different meds that can be

> used,

> > > most of which can be Rx to children.

> > >

> > > Sent from my iPhone

> > >

> > > **

> > > *I asked his neurosurgeons nurse on the phone, and pediatrician for

> > >

> > > something specifically for nerve pain, and they both said all he could

> > take

> > > is ibuprofen. He is scheduled to have an MRI on April 7th to see if his

> > > Chiari is worse , or he has developed a syrinx, and to look at the TC

> to

> > > see

> > > if that is why his pain is increasing. I am going to ask his neuro

> again

> > (

> > > in person) when we go in for the results about meds for children with

> > nerve

> > > pain.*

> > > **

> > >

> > > *

> > >

> > > *

> > >

March 29, 2011

Neurontin is probably the most common and most successful med for treating

neuropathy. I think because of this, it is typically the one that most MDs

try first. I tried it twice, but it just made me too sleepy - sleeping 20

hrs/day. So, I guess it controlled my pain, since I was able to sleep that

long and not wake from pain. But, sleeping that much is really not

practical - or living, for that matter...

Finding the right Rx for neuropathy is just a matter of trial and error.

Unfortunately, finding the right Rx can be a slow and tedious process since

most of the meds used for neuropathy require a taper up (generally 2 weeks

up to get to a therapeutic blood level) and down and a lot of them cannot be

taken together.

I know I didn't include Dilantin or Lamictal in my previous list of

anti-epileptics that can be taken for neuropathy, but I have seen a few

sources that include those in the list.

Another possibility is the Lidocaine patch. I'm not sure how it would work

for neuropathy (my MD tried it for my back pain), since you apply it to the

painful area. Unless the lidocaine could penetrate down to the affected

nerve roots and stop the pain at the root. I don't know, but seems

unlikely. It didn't help my pain, but no side effects either. I might as

well have rubbed hand lotion on my back.

I also read on one site that the anti-arrhythmic, mexiletine, can be used to

treat neuropathy. Not sure about this one. It was never recommended to me

(seeing as I have been on the gamut), but doesn't mean it can't be used. I'm

just not familiar with it.

I came across this site in my search. It doesn't specifically list all the

different drugs in a particular class that can be used, but what I found

interesting (and different from other sites) was that it describes how each

class works to control neuropathy.

http://www.endocrineweb.com/guides/diabetic-neuropathy/medications-treat-diabeti\

c-peripheral-neuropathy

I have taken just about all of them (not necessarily in this order) -

Depakote, Tegretol, Neurontin, Topamax, Keppra, Lyrica, Cymbalta, tricyclic

antidepressant (Imiprimine) -- I'm sure there's one or two I'm

forgetting... Now, I don't take anything other than my MS. They either

didn't work for the pain or had side effects that were intolerable, with the

exception of Cymbalta. But, it was too expensive.

Jenn

> *Thank you so much Jenn. I had made a post about 2 weeks ago asking other

> parents what meds their kids were on for pain, and if their kids

> experienced

> any side effects, but I only got one response. ( was for neurotonin).I will

> look into these other meds.*

> **

> *carrie

> *

>

> >

> > ,

> >

> > I don't know the names of all of them, but most Rx to treat neuropathy

> are

> > anti-convulsants, and there are a lot of children with epilepsy and all

> > those meds used to treat their epilepsy can pretty much be used to treat

> > neuropathy (except dilantin and the barbiturates). I found a list of

> > pediatric anti-convulsants, and these are the ones that I know can be

> used

> > to treat neuropathy (not necessarily inclusive list).

> >

> > - Carbamazepine (Tegretol, Carbatrol)

> > - Gabapentin (Neurontin)

> > - Levetiracetam (Keppra)

> > - Pregabalin (Lyrica)

> > - Tiagabine (Gabitril)

> > - Topiramate (Topamax)

> > - Valproate / Valproic acid (Depakote, Depakene)

> >

> > There are also antidepressants that kids can take and I'm sure a number

> of

> > them are the same ones that adults can take to treat neuropathy. All I

> can

> > suggest is to Google it and see if you can find an inclusive list of

> > pediatric Rx for neuropathy. Or Google pediatric Rx anti-convulsants and

> > anti-depressants. Then look up Rx for neuropathy and see which ones

> > overlap.

> >

> > Jenn

> >

> > > *,*

> >

> > > *The Neuro's nurse said that the Dr probably would prescribe something

> > > else,

> > > he just wants to wait until after he gets the results of my son's MRI .

> > His

> > > MRI is April 7th, then the folllow up appt. to get the results is April

> > 21.

> > > My sons pain has always been relieved by ibuprofen and rest, and he has

> > > only

> > > had to take it a couple times a week. It is only recently that the pain

> > is

> > > getting worse and not being relieved with ibuprofen.*

> > > *What are the names of the meds that can be used on children?? I want

> to

> > > know the names so I can ask the Dr.*

> > > **

> > > *thanks,*

> > > *

> > >

> > > *

> > > On Tue, Mar 29, 2011 at 3:25 AM, Bobin

> > wrote:

> > >

> > > >

> > > > ,

> > > >

> > > > I wonder why they will not Rx him something for neuropathy. Ibuprofen

> > is

> > > > not

> > > > known for treating it. There are tons of different meds that can be

> > used,

> > > > most of which can be Rx to children.

> > > >

> > > > Sent from my iPhone

> > > >

> > > > **

> > > > *I asked his neurosurgeons nurse on the phone, and pediatrician for

> > > >

> > > > something specifically for nerve pain, and they both said all he

> could

> > > take

> > > > is ibuprofen. He is scheduled to have an MRI on April 7th to see if

> his

> > > > Chiari is worse , or he has developed a syrinx, and to look at the TC

> > to

> > > > see

> > > > if that is why his pain is increasing. I am going to ask his neuro

> > again

> > > (

> > > > in person) when we go in for the results about meds for children with

> > > nerve

> > > > pain.*

> > > > **

> > > >

> > > > *

> > > >

> > > > *

> > > >

March 29, 2011

*Jenn,*

*WOW you sure have taken a lot of meds. Can I ask you how old you were when

the pain became really bad?How old were you when you started taking stronger

meds other than ibuprofen?*

**

* Were you diagnosed as a child? I am so worried that as my son grows taller

he will have more and more pain. Right now, my son is 10 yrs. old and

already 5'1. ( his dad is 6'4). I pray he doesnt have a lifetime of pain. I

so wish I could take his pain away. *

**

*carrie

*

>

> Neurontin is probably the most common and most successful med for treating

> neuropathy. I think because of this, it is typically the one that most MDs

> try first. I tried it twice, but it just made me too sleepy - sleeping 20

> hrs/day. So, I guess it controlled my pain, since I was able to sleep that

> long and not wake from pain. But, sleeping that much is really not

> practical - or living, for that matter...

>

> Finding the right Rx for neuropathy is just a matter of trial and error.

> Unfortunately, finding the right Rx can be a slow and tedious process since

> most of the meds used for neuropathy require a taper up (generally 2 weeks

> up to get to a therapeutic blood level) and down and a lot of them cannot

> be

> taken together.

>

> I know I didn't include Dilantin or Lamictal in my previous list of

> anti-epileptics that can be taken for neuropathy, but I have seen a few

> sources that include those in the list.

>

> Another possibility is the Lidocaine patch. I'm not sure how it would work

> for neuropathy (my MD tried it for my back pain), since you apply it to the

> painful area. Unless the lidocaine could penetrate down to the affected

> nerve roots and stop the pain at the root. I don't know, but seems

> unlikely. It didn't help my pain, but no side effects either. I might as

> well have rubbed hand lotion on my back.

>

> I also read on one site that the anti-arrhythmic, mexiletine, can be used

> to

> treat neuropathy. Not sure about this one. It was never recommended to me

> (seeing as I have been on the gamut), but doesn't mean it can't be used.

> I'm

> just not familiar with it.

>

> I came across this site in my search. It doesn't specifically list all the

> different drugs in a particular class that can be used, but what I found

> interesting (and different from other sites) was that it describes how each

> class works to control neuropathy.

>

http://www.endocrineweb.com/guides/diabetic-neuropathy/medications-treat-diabeti\

c-peripheral-neuropathy

>

> I have taken just about all of them (not necessarily in this order) -

> Depakote, Tegretol, Neurontin, Topamax, Keppra, Lyrica, Cymbalta, tricyclic

> antidepressant (Imiprimine) -- I'm sure there's one or two I'm

> forgetting... Now, I don't take anything other than my MS. They either

> didn't work for the pain or had side effects that were intolerable, with

> the

> exception of Cymbalta. But, it was too expensive.

>

> Jenn

>

> > *Thank you so much Jenn. I had made a post about 2 weeks ago asking other

>

> > parents what meds their kids were on for pain, and if their kids

> > experienced

> > any side effects, but I only got one response. ( was for neurotonin).I

> will

> > look into these other meds.*

> > **

> > *carrie

> > *

> >

> > >

> > > ,

> > >

> > > I don't know the names of all of them, but most Rx to treat neuropathy

> > are

> > > anti-convulsants, and there are a lot of children with epilepsy and all

> > > those meds used to treat their epilepsy can pretty much be used to

> treat

> > > neuropathy (except dilantin and the barbiturates). I found a list of

> > > pediatric anti-convulsants, and these are the ones that I know can be

> > used

> > > to treat neuropathy (not necessarily inclusive list).

> > >

> > > - Carbamazepine (Tegretol, Carbatrol)

> > > - Gabapentin (Neurontin)

> > > - Levetiracetam (Keppra)

> > > - Pregabalin (Lyrica)

> > > - Tiagabine (Gabitril)

> > > - Topiramate (Topamax)

> > > - Valproate / Valproic acid (Depakote, Depakene)

> > >

> > > There are also antidepressants that kids can take and I'm sure a number

> > of

> > > them are the same ones that adults can take to treat neuropathy. All I

> > can

> > > suggest is to Google it and see if you can find an inclusive list of

> > > pediatric Rx for neuropathy. Or Google pediatric Rx anti-convulsants

> and

> > > anti-depressants. Then look up Rx for neuropathy and see which ones

> > > overlap.

> > >

> > > Jenn

> > >

> > > > *,*

> > >

> > > > *The Neuro's nurse said that the Dr probably would prescribe

> something

> > > > else,

> > > > he just wants to wait until after he gets the results of my son's MRI

> .

> > > His

> > > > MRI is April 7th, then the folllow up appt. to get the results is

> April

> > > 21.

> > > > My sons pain has always been relieved by ibuprofen and rest, and he

> has

> > > > only

> > > > had to take it a couple times a week. It is only recently that the

> pain

> > > is

> > > > getting worse and not being relieved with ibuprofen.*

> > > > *What are the names of the meds that can be used on children?? I want

> > to

> > > > know the names so I can ask the Dr.*

> > > > **

> > > > *thanks,*

> > > > *

> > > >

> > > > *

> > > > On Tue, Mar 29, 2011 at 3:25 AM, Bobin

> > > wrote:

> > > >

> > > > >

> > > > > ,

> > > > >

> > > > > I wonder why they will not Rx him something for neuropathy.

> Ibuprofen

> > > is

> > > > > not

> > > > > known for treating it. There are tons of different meds that can be

> > > used,

> > > > > most of which can be Rx to children.

> > > > >

> > > > > Sent from my iPhone

> > > > >

> > > > > **

> > > > > *I asked his neurosurgeons nurse on the phone, and pediatrician for

> > > > >

> > > > > something specifically for nerve pain, and they both said all he

> > could

> > > > take

> > > > > is ibuprofen. He is scheduled to have an MRI on April 7th to see if

> > his

> > > > > Chiari is worse , or he has developed a syrinx, and to look at the

> TC

> > > to

> > > > > see

> > > > > if that is why his pain is increasing. I am going to ask his neuro

> > > again

> > > > (

> > > > > in person) when we go in for the results about meds for children

> with

> > > > nerve

> > > > > pain.*

> > > > > **

> > > > >

> > > > > *

> > > > >

> > > > > *

> > > > >

March 29, 2011

,

Its nice to hear that some nsg's are finally taking the conservative

approach with youngsters. I couldn't agree more with him. If they had found

my TC earlier and done surgery when I was a child, odds are the whole scar

tissue cycle would have started much, much earlier and I wouldn't have

gotten to live a normal childhood and young adulthood. If someone has neuro

deficits, its one thing, but w/o (IMO), its another.

Jenn

>

> **

> *His Neuro said that since my son is young and can walk, run and play, he

> does not feel the surgery is not worth the risk, and that my son could end

> up in far more pain than he is in now.*

> **

> *Thanks for your advice.*

> *

>

March 30, 2011

You are very welcome , I hope they give your son something to help his

pain. Ibuprofen does nothing for nerve pain. It helps a little with muscle aches

but thats about it and its bad for the liver and stomach. Your son is so young

to be in so much pain! I'm so sorry. As someone who deals with nerve pain daily

I sympathize greatly. Unfortunately the state I am in is not a medical cannabis

state so I am in the process of moving to one that is. I do not want to alarm

you (I'm sure this wont be the first you've heard this though) but I can tell

you first hand that this unrelenting nerve pain " can " lead one to suicidal

thoughts. Before this last surgery I was researching states and countries with

physician assisted suicide programs so that my family could be involved and not

just left in devastation from coming in and finding me. Fortunately for me, this

last surgery helped a bit...enough to allow me to continue my search for

something else to help me. I found medical cannabis, and for me, it has been a

life saver. I cannot tell you how many times I have thanked God for how old I

am...in other words, my truly intense pain didnt start until age 36, I am now

47, I didnt have to suffer with the intense pain from a young age and I am SO

grateful. I honestly cannot imagine it. So please, do everything you can to give

your son as much comfort as possible. It just isnt possible (at this time) to

alleviate all the pain but even a degree or two helps tremendously. I am not

advising here but I do want you to be aware that medical cannabis has been used

with children with seizures and autism so if you feel that the pharmaceuticals

are not serving your son, try something different. Bless you both,

________________________________

To: tetheredspinalcord

Sent: Tue, March 29, 2011 2:18:11 AM

Subject: Re: Re: Update on my daughter's appt w/local MD....now Medical

Cannabis