Re: Morphine/Michellle

[Guest guest]

Cindy - feel free to vent any time!! Occasionally that is the best

blessing we can get.

I do understand that your son needs social more than school right

now, and I guess I didn't make that clear in my previous post. Most

homeschoolers understand the need for socialization - it often

doesn't just happen for us - we have to work at it - albiet most of

us don't have the severe problems that Dylan does. When I said that

many who don't fit in school homeschool - I meant they don't fit in

socially - often due to illness - sometimes debilitating illness.

I personally know boys about Dylan's age that don't enjoy going to

the movies and the mall - aren't into sports or all the usual

things. For example - one boy I know spends hours playing computer

games and programing his computer - another spends hours playing

chess. My brothers favorite thing to do at Dylan's age was to hang

out with one or two friends talking about guns (a redneck farmer he

is).

I know yet another boy who is now in his mid twenties and is a

computer geek (I say with respect). He was very ill in his teens -

and I mean very ill - he is doing better now - but still not like

most other guys his age - and I know that he would understand and

depending on personallity would be your son's friend in spite of his

illness. High school sports and prom, etc aren't a required rite of

the teenage years - missing those things maybe ok if you can find

other things - even small things to replace them.

If your son isn't up to visits because of the pain - there is always

online gaming, email, etc. If your son truely wants and needs

socialization you have to keep trying. Even a little is better than

none. And one place to look is a homeschool group - not that you

would even join the group - just make a connection, maybe a friend or

two.

Now I just have to say regarding your son's illness - I am no expert,

believe me, but it seems like more than just EDS. Is it possible

that there is something else going on but the doctors just don't see

it and blame it on EDS? I believe that happens a lot. What about

going to a doctor that knows nothing about EDS and seeing what he/she

can find. Maybe a doctor who practices integrative medicine - who

thinks outside the box.

I'm sure you've had tons of advice and I hesitate to give you the

advice I just did - but I just don't want you to give up and accept

that this is just EDS and there is nothing that can be done - just

pain meds and more pain meds that don't always work and have such

horrid side affects. Maybe there is another answer out there - you

MUST keep looking and never give up.

My thoughts, prayers and hopes are with you tonight!

[Guest guest]

From: mohrs6

To: ceda

I personally know boys about Dylan's age that don't enjoy going to

the movies and the mall - aren't into sports or all the usual

things.......... Now I just have to say regarding your son's illness - I am

no expert,

believe me, but it seems like more than just EDS. Is it possible

that there is something else going on but the doctors just don't see

it and blame it on EDS? .......I'm sure you've had tons of advice and I

hesitate to give you the

advice I just did - but I just don't want you to give up and accept

that this is just EDS and there is nothing that can be done - just

pain meds and more pain meds that don't always work and have such

horrid side affects. Maybe there is another answer out there - you

MUST keep looking and never give up.

My thoughts, prayers and hopes are with you tonight!

****************************************************

Your so sweet , Thank you. Dylan has always been somewhat of a loner,

so having no friends right now, is not as hard on him as it would be on most

teens. He is a computer geek and an online gamer. His gaming skills are at a

compatiton level. The sad thing is, he has lost interest in that too. His career

goal was to make online games. Over this last year, his socialization had been

over his PC, It wasn't the same as face to face, but it was something. For

months now, the only time he leaves his room is to use the bathroom, or a Dr

visit. I'm really out of ideas to get him out.

I have thought for sometime that more than EDS is going on here, I have asked

every Dr we have seen for the last year. And there have been many. His list of

specialty Drs is very long. And I have research so much on my own. It does seem

a possibility that POTS may be playing a part in this, but now, to get a Dr to

listen.

He and I are sick of the Narcotics, but for now, it's the only thing that

takes the edge off. I am a massage therapist. And I am pretty good in energy

work. It helps his little ache areas, but doesn't touch the big ones. Mike was

here 4 days in January. We worked together on him, usually 8 hours a day. It

helps, but is not the answer by itself, so far at least. I would love to find an

answer other than drugs to get him to a funtional level of pain. Guess I'm just

temparily tired at the moment of the fighting with Docs and insurance. Maybe the

conferance will get me stirred up again. I know I need a break from this last

year of being home with him. I need to get strong again.

Thanks for your suggestions and concerns. I'll find the mamma cat in me again.

Love, Cindylouwho

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

From: mohrs6

To: ceda

I personally know boys about Dylan's age that don't enjoy going to

the movies and the mall - aren't into sports or all the usual

things.......... Now I just have to say regarding your son's illness - I am

no expert,

believe me, but it seems like more than just EDS. Is it possible

that there is something else going on but the doctors just don't see

it and blame it on EDS? .......I'm sure you've had tons of advice and I

hesitate to give you the

advice I just did - but I just don't want you to give up and accept

that this is just EDS and there is nothing that can be done - just

pain meds and more pain meds that don't always work and have such

horrid side affects. Maybe there is another answer out there - you

MUST keep looking and never give up.

My thoughts, prayers and hopes are with you tonight!

****************************************************

Your so sweet , Thank you. Dylan has always been somewhat of a loner,

so having no friends right now, is not as hard on him as it would be on most

teens. He is a computer geek and an online gamer. His gaming skills are at a

compatiton level. The sad thing is, he has lost interest in that too. His career

goal was to make online games. Over this last year, his socialization had been

over his PC, It wasn't the same as face to face, but it was something. For

months now, the only time he leaves his room is to use the bathroom, or a Dr

visit. I'm really out of ideas to get him out.

I have thought for sometime that more than EDS is going on here, I have asked

every Dr we have seen for the last year. And there have been many. His list of

specialty Drs is very long. And I have research so much on my own. It does seem

a possibility that POTS may be playing a part in this, but now, to get a Dr to

listen.

He and I are sick of the Narcotics, but for now, it's the only thing that

takes the edge off. I am a massage therapist. And I am pretty good in energy

work. It helps his little ache areas, but doesn't touch the big ones. Mike was

here 4 days in January. We worked together on him, usually 8 hours a day. It

helps, but is not the answer by itself, so far at least. I would love to find an

answer other than drugs to get him to a funtional level of pain. Guess I'm just

temparily tired at the moment of the fighting with Docs and insurance. Maybe the

conferance will get me stirred up again. I know I need a break from this last

year of being home with him. I need to get strong again.

Thanks for your suggestions and concerns. I'll find the mamma cat in me again.

Love, Cindylouwho

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca