Re: Discussion form for biomedical treatments

[Guest guest]

Life is a mystery and our kids add to the joy of that life long mystery.

Stay friends guys - some of us only have each other on the list who truly

understand what our life is like.

>

>

> Dear Listmates:

>

> I want to thank Sherry for her tenacity with regard to sharing the

> availability of a new discussion list that some of you may be interested in.

>

>

> It has always been my intent to provide a forum in which members can share

> what has worked for them, what has not worked for them, and ideas they are

> pursuing. The trick to doing this is in how these ideas and solutions are

> presented. It is reasonable that when a person feels they have found the

> right path for their family and child, they want to share it with others.

> The hard part is realizing that there is no *one* way to parent a child,

> with or without a disability. Every family has their own culture and belief

> system that must be honored and respected.

>

> Recently, there were a series of exchanges in which some members were hurt

> and others were discouraged - regardless of their opinion. There were hurt

> feelings all around. Careful attention to presentation and respect for

> others would have avoided the situation, but, some topics bring are simply

> very polarizing.

>

> Here is the description:

>

> The list is an opportunity to discuss biomedical, lternative and

> complementary medicine and treatments. Members from this list have started

> this discussion as a way to offer a forum for these topics including

> treatments for Down Syndrome as well as Autism. Of course traditional

> medicine is considered on topic and crucial for h our often medically

> compromised children as well.

>

> Perhaps you have a child with only one diagnosis but are still h interested

> in learning from and sharing with us. Perhaps you are a professional or

> family relative who cares about these h issues...everything from gfcf diets

> and TNI to HBOT and RDI.

>

> The group is also a yahoo group and can be found at the URL below:

>

> http://groups.yahoo.com/group/DSAofLouisville

>

> I would like to emphasize that all are always welcome here and all topics

> are welcome here - as long as they are presented in a manner that is

> respectful to all.

>

> There are many ways to raise a child, with or without Down syndrome or a

> dual diagnosis, or a medical mystery. I believe you all to be terrific

> parents!

>

> Take care,

> Joan Guthrie Medlen, RD, LD

> Listserv " owner "

> MOther of Andy, who is 21 now.

>

>

>

--

Sara- different pathways lead to Nirvana.

[Guest guest]

Thanks so much Joan, I'm sorry to burden you with more list duties when you are

having such a rough time of it. Prayers for you and your family.

Here is a copy of what I sent to Joan originally I'm glad Joan mentioned that

these issues can still be discussed on this list...but for those who wish to

delve deeper, and to locate resources for alternative therapies this list has

been formed. Just as you may belong to a special list for speech therapy, heart

conditions, homeschooling etc. in addition to DS-Aut here is one for Biomedical

discussion.

To all DS-Aut members,

I have had occasion to email directly with Joan our listowner and fearless

leader, requesting permission to post an official announcement about a newly

formed Biomed, alternative and complementary treatment list. Because our

precious homegroup DS-Aut seemed to take on a somewhat inflammatory and didactic

tone when the topic of Biomed recently exploded it seems prudent to offer

another forum where experimental and nontraditional methods might be discussed

without fear of disrupting our primary " support " group here. This in no way is

to be considered a splitoff from this group...simply an additional type of focus

group for those who wish to pursue these matters in more depth.

We intend to refer traditional matters relating to DS-Autism back here to the

mother ship.

And members here may feel free to refer new folks who want to discuss at length:

supplements, TNI, DAN doctors,biomed treatments, and alternative therapies to

our satellite group.

Below is the official announcements which you may feel free to forward...along

with this intro if you wish.

>>>I'd like to invite you to join a newly active group dedicated to the dual

diagnosis of DS and Autism. We're hoping to provide an openminded discussion of

biomedical, alternative and complementary medicine and treatments. This would

include treatments for Down Syndrome as well as Autism. Of course traditional

allopathic medicine is considered on topic and crucial for our often medically

compromised children as well. Perhaps you have a child with only one diagnosis

but are still interested in learning from and sharing with us. Perhaps you are a

professional or family relative who cares about these issues...everything from

gfcf diets and TNI to HBOT and RDI.

http://groups.yahoo.com/group/DSAofLouisville >>>>>

Sincerely,

SherryM mom to 21yo dtr with DS-Autism

[Guest guest]

I am a believer in both traditional and biomedical treatments, and enjoy

learning about both. I plan to join the other forum as well as remain on

this one.

I just wanted to say that I feel (my opinion from experience) that going

forward whether it's on this list or another one, that first and foremost,

we as parents have to do what's best for our own children as we research and

discern what we learn from other parents, doctors, professionals, web

sites, etc. We have to do what's best based on our own child's individual

needs, our own situation financially, based on what's available to us, etc.

For

example, even going through the DAN protocol this past year, I have found

that just because the DAN doctor suggests it (just like any other doctor),

it doesn't mean it's completely right for my child. Some things suggested

have been great, and some things I've found to not seem to be right or good

for her. Sometimes I have to tweak what I'm suggested according to what

I know or believe her needs and what I am able to handle or accomplish. It

doesn't mean it's right or wrong - but I am her parent and I need to

ultimately decide what's best.

Heidi -- Wisconsin, USA

(Mom to 8 w/ DS, ASD, epilepsy; Clara 3)

No two flowers bloom in exactly the same way, but all are beautiful !

[Guest guest]

Glad you are sticking around Irma as I have enjoyed becoming your friend

and learning from you. You have been a HUGE blessing to me (as have many

others on the list), in helping me to learn things with regard to the

biomedical path we are currently on.

I haven't been on the list or have known you long, but I believe you are a

great mom to as you have had to go through many trials and things,

and learn, research, and discern in the process, to come up with what's

best for him.

That's what it's all about - the well-being of all our children!

Heidi

[Guest guest]

Kuddos here as well. Believer on the approaches I have seeked & not jumping

into blindly as I have undergone in similar avenues with the good, the bad &

the ugly within the medical issues to where I am currently addressing for my

son's needs.

I have refrain from posting anything to do with the biomedical approach

(dietary, supplements or anything related to this topic here on this

listserve). Besides currently writing this here.

I did receive several emails privately in regards on why I have not been on

lately. I was planning on leaving the listserve. Have also remove lots of

resource links that I have posted here on this listserve, especially the

biomedical issues. Was writing up my Adios post & to thank everyone who we

have traveled such a journey together, but have been asked to hang around

since it has quiet down in regards to this topic.

How could I say " no " when several have been my friends to lean on when

issues arise when I was finally thrilled to such findings where there were

other like my son with similar issues who could relate when learning about

the autism word to such hurdles of roadblocks to break through.

Why on leaving? Because it felt like once again excluding this population of

who benefit from the biomedical approach as my son, which does include

conventional & alternative treatments. If anyone is so proactive within the

autism arena, this topic would not offend them & would simply hit the delete

button.

What a deejayvu emotional feeling once again, when my son was a youngerster

& did not fit in when I use to attend several Down syndrome support groups.

Thank you Joan, Sherry & Cyndi for posting what you have, not worth dealing

with any controversial issues with such complex challenges thrown into our

plate where I choose other alternative avenues to hang onto such HOPE &

Faith.

Apologize to all for bringing up such topic to stir up such issues which my

son who is dx'd with Down syndrome & severe autism benefits from. I have

close friends who individual adult child with severe autism who have been

severely beaten, some are no longer around (dead), some are undergoing

through such Guardianship abuse, the list goes on where I am really doing my

best to get my son's health & wellness taken care of, while I am around to

avoid being placed in state institution as our state of Texas is so

institutional biased (we have 13) where I am connected with several advocacy

organization on making a difference here while navigating the state system.

I do not want to set my son up to be placed in an institution setting.

God Bless you all,

Irma,21,DS/ASD

[Guest guest]

Thank you Heidi,

Appreciate it very much. When on this journey it is taking it one day at a

time & glad there are options to choose from but of course when one is ready

& take preventive measures when possible, there is so much out there.

I have many friends who I respect who I am still friends who I never

disrespect for the choices they make. Why? Because it is their choice on

whatever treatments or therapy.

Whatever helps their kiddos to be able to function on a daily basis when

given such an opportunity.

When one like in my son's case reaches 21 y/o, it is such another ball game.

Especially when in Texas. Here it is 2010, just sad, they are usually seen

only for profit, another topic as it is hard to believe such corruption is

going on.

I love were I was born & raise so I'll do what I can to make some noise

where needed.

Sure have. : ) But, I know I am not alone.

Having a child/adult with disAbilities is another story.

Glad you follow your instincts to where what you can do. We do learn from

each other, never-ending learning though.

Will be taking off soon, better take some tissues w/me as I just love

observing the smiles of how much anyone of all ages with special

disAbilities can roam & do whatever they want at 's Wonderland Park.

Such a Blessing to know Mr.Hartman & some of his staff who has allowed this

park not just for our community but for many to be able to have a magical

day.

Irma,21,DS/ASD

>

>

> Glad you are sticking around Irma as I have enjoyed becoming your friend

> and learning from you. You have been a HUGE blessing to me (as have many

> others on the list), in helping me to learn things with regard to the

> biomedical path we are currently on.

>

> I haven't been on the list or have known you long, but I believe you are a

> great mom to as you have had to go through many trials and things,

> and learn, research, and discern in the process, to come up with what's

> best for him.

>

> That's what it's all about - the well-being of all our children!

>

> Heidi

>

>

[Guest guest]

Heidi, Your are absolutely correct that just because a DAN doc says suggests

something like any other Dr. it doesn't make it right. I agree. It is just in my

personal experience with my son I have to say mainstream Dr.'s were not

listening. used to come home from school everyday and scream for 3-4 hours.

I have had him to numerous Dr.s, neurologist,surgeons and so on. I have had

blood work,Ct scans, MRI's,etc. The Dr. would brush his symptoms off and If I

pushed for additional testing, then they would do it reluctantly. I could get

two Dr.'s in the same practice give me (2) totally different readings of the

same test from the same date. I have had Dr.'s tell me that they do not treat

autistic children and could not help my son. I agree that we have to do what is

best for our child and for our own financial situation. I also believe that

there is no magic bullet/pill that will help all children the same. I just talk

about my experiences as a mom in hopes of helping other mothers realize that we

have to speak for the child that cannot speak. Do not give up just because A Dr.

says " it is just hormones " not behaviors, or not autism because that is what I

personally have gone through. I would never tell a mother to follow my footsteps

because their child will be recovered from autism because that is not true. I am

trying to recover my son to help him be the best person that he can be because I

feel that it is my duty to help him. After all I brought him into this world.

Heidi you are a great mom as are the other mothers on this board. Each one of us

brings a different kind of experience to this group. So all we can do is lean on

each other for words of support and hope. I could not have tried the things I

have tried to help without applying for grants to help him. Every 3-4 years

I have lost jobs because the companies I work for close. Last year my husband

and myself lost our jobs a week apart. You are a smart mom for not trusting a

Dr. just because he is a " Dr. That is what the message is. Do not believe

everything you hear from Dr.'s, Govt. etc. READ, Listen, and make you mind up

for yourself for what the truth really is. From what you have said, you already

do that. Congratulations you graduated from MOM 101. Have a great day. Cyndi B

>

> I am a believer in both traditional and biomedical treatments, and enjoy

> learning about both. I plan to join the other forum as well as remain on

> this one.

>

> I just wanted to say that I feel (my opinion from experience) that going

> forward whether it's on this list or another one, that first and foremost,

> we as parents have to do what's best for our own children as we research and

> discern what we learn from other parents, doctors, professionals, web

> sites, etc. We have to do what's best based on our own child's individual

> needs, our own situation financially, based on what's available to us, etc.

For

> example, even going through the DAN protocol this past year, I have found

> that just because the DAN doctor suggests it (just like any other doctor),

> it doesn't mean it's completely right for my child. Some things suggested

> have been great, and some things I've found to not seem to be right or good

> for her. Sometimes I have to tweak what I'm suggested according to what

> I know or believe her needs and what I am able to handle or accomplish. It

> doesn't mean it's right or wrong - but I am her parent and I need to

> ultimately decide what's best.

>

> Heidi -- Wisconsin, USA

> (Mom to 8 w/ DS, ASD, epilepsy; Clara 3)

> No two flowers bloom in exactly the same way, but all are beautiful !

>

>

>

[Guest guest]

Cyndi:

Thanks! Yes, I've had many traditional docs fail me too. And... what

really gets me is how come the two neurologists we had didn't tell us that

myoclonic jerk seizures (which are what has) are usually a " pathway " to

autism??????? Dr. Capone told me that. UGH!!!

Heidi