need help- huge decision

[Guest guest]

Hello. I know everyone's time is real valuable so I'll try to be

real quick. We are at yet another crossroads in our journey and

again are in search of any knowledge, advice, or experiences from

our fellow seekers.

Our son (4 ½ years old) has been diagnosed with Autism and Landau-

Kleffner syndrome.

Like many of you, we've tried a lot things and seen a lot of

people. Most recently we did the BEAM study with Dr. Duffy in

Boston. It " found " what two overnight EEGs, a CT scan and an MRI

all completed over the last year and a half couldn't, according to

the doctor, " the highest brain spiking in the left temporal area

that he has ever seen. "

This summary is very concerning to say the least especially coming

from a Physician/Neurologist of Dr. Duffy's stature and experience.

The recommended option presented to us now is to begin a regiment of

high dose steroids. The time period would be for six months. The

steroid they would utilize is called orapred and it would be taken

daily. The dosage will be determined by his weight.

In short, as I understand it so far, this is a potentially high

reward, potentially high risk venture. To date, we have operated

outside of and contrary to conventional medicine's limited list of

treatments. In particular, refusing to use pharmaceutical

medications to treat symptoms of causes.

With the BEAM study results however we feel like we are now in a

different place.

If any of you have been at this point, had to make this decision or

traveled down this road we would be eternally grateful if you would

be so giving as to share your experiences with us.

I'm not sure if our email is readily available as I hope to post

this to multiple " groups " we are part of, so if it isn't, our email

is: bstokes56@...

If you'd prefer, we could call you if you want to leave a phone

number.

In closing as a side note I tried to use my computers thesaurus

option on the word " seekers " , seemed like there was probably a

better synonym to use, below is what came up, I hope it is an omen

of good things to come for all of our children's " seekers "

Ask, and it shall be given you; seek, and ye shall find; knock, and

it shall be opened unto you:

For every one that asketh receiveth; and he that seeketh findeth;

and to him that knocketh it shall be opened.

Thanks for your time.

The Stokes'

autistic/lks son, age 4, SCD 9+ mos.

[Guest guest]

Hi Stokes family,

There is some info on Landau-Kleffner symdrome at

http://www.aboutkidshealth.ca/Epilepsy/Landau-Kleffner-Syndrome.aspx?

articleID=6986&categoryID=EP-nh2-04h

Some previous pecanbread threads on Landau-Kleffner:

http://health.groups.yahoo.com/group/pecanbread/message/65274

http://health.groups.yahoo.com/group/pecanbread/message/62035

http://health.groups.yahoo.com/group/pecanbread/message/60834

http://health.groups.yahoo.com/group/pecanbread/message/34257

I hope this helps,

Sheila, SCD Feb. 2001, UC 23yrs, PCOD 22yrs

mom of and

>

> Hello. I know everyone's time is real valuable so I'll try to be

> real quick. We are at yet another crossroads in our journey and

> again are in search of any knowledge, advice, or experiences from

> our fellow seekers.

> Our son (4 ½ years old) has been diagnosed with Autism and Landau-

> Kleffner syndrome.

> Like many of you, we've tried a lot things and seen a lot of

> people. Most recently we did the BEAM study with Dr. Duffy in

> Boston. It " found " what two overnight EEGs, a CT scan and an MRI

> all completed over the last year and a half couldn't, according to

> the doctor, " the highest brain spiking in the left temporal area

> that he has ever seen. "

> This summary is very concerning to say the least especially coming

> from a Physician/Neurologist of Dr. Duffy's stature and experience.

> The recommended option presented to us now is to begin a regiment

of

> high dose steroids. The time period would be for six months. The

> steroid they would utilize is called orapred and it would be taken

> daily. The dosage will be determined by his weight.

> In short, as I understand it so far, this is a potentially high

> reward, potentially high risk venture. To date, we have operated

> outside of and contrary to conventional medicine's limited list of

> treatments. In particular, refusing to use pharmaceutical

> medications to treat symptoms of causes.

> With the BEAM study results however we feel like we are now in a

> different place.

> If any of you have been at this point, had to make this decision or

> traveled down this road we would be eternally grateful if you would

> be so giving as to share your experiences with us.

> I'm not sure if our email is readily available as I hope to post

> this to multiple " groups " we are part of, so if it isn't, our email

> is: bstokes56@...

> If you'd prefer, we could call you if you want to leave a phone

> number.

> In closing as a side note I tried to use my computers thesaurus

> option on the word " seekers " , seemed like there was probably a

> better synonym to use, below is what came up, I hope it is an omen

> of good things to come for all of our children's " seekers "

>

> Ask, and it shall be given you; seek, and ye shall find; knock, and

> it shall be opened unto you:

> For every one that asketh receiveth; and he that seeketh findeth;

> and to him that knocketh it shall be opened.

>

> Thanks for your time.

>

> The Stokes'

> autistic/lks son, age 4, SCD 9+ mos.

>