Re: DESI-Kennedy Krieger Experience

[Guest guest]

Oh my...reading all these emails I am so touched by all of your responses...I am

still reading them...and hopefully some

of you can also chime in as to where else you have gone for evals and how

effective they've been...particularly with

collaborating with your docs at home!!! Can you tell what my New Year's

Resolution was this year?!

I cannot begin to express my gratitude for all of your posts; your openness and

frankness and ideas-

particularly about trying to find a place closer to Hawai'i...but know that I

would go to the ends of the earth to

get my daughter what she needs. There are grants out there...

It's hard to put what we're looking for into one sentence, but I can tell you

that the urgent need to curb her repetitive behaviors and OCD behaviors-like the

need to underline every sentence/line in a book ie a phonebook that keeps her up

at night and interferes with her ability to read while distracted with this

compulsion would probably be higher

on the list at this point than even our need to curb her self-talking " alien " so

we can spend more time in the world outside

our doors...and untimately so she can have an easier time " fitting in " in her

new middle school environment---

Does this sound familiar to anyone?

I always say she only has 'one pass on this planet' and I'm going to do my

darndest to help her make the

most out of it.

I am now thinking about uploading this beautiful child's performance on You Tube

so you all can see exactly

WHO you're helping...

MAHALO! MAHALO! MAHALO! and keep it coming!!

IMUA! (Go forward!)

Desi

________________________________

To:

Sent: Fri, January 15, 2010 6:29:56 AM

Subject: Re: DESI

Remember Kathy, 's mom, she is in Sacramento & could recommend some

great doc's out there in CA.

I'll email her for any information if Desi would not mind.

Well, y'all know since finally had the opportunity of meeting Dr. Capone

last year was very impressed as well but of course due to what

benefits from with other avenues than what KKI has to offer, was just no go

for him.

Which I knew where Dr.Capone stood when I spoke to him. He was curious

though to want to know more when individuals have autoimmune deficiencies,

but will or not happen?

I am grateful that he has helped many within whatever recommendation he has

been able to help many who or where many failed them, better than not

finding one that at least helped somewhere & the awareness of the DS & AU.

But, many physicians who I have cross lately w/ who are the unknown,

not recognized have actually been great which of glad to finally have such a

relief.

Guess, everything happens for a reason as KKI wanted out of pocket expenses

& at that time I could not afford it & they did not accept our health

insurance too, but this has been years back though. When I brought this up

on the listserve, Joan recommended Dr. .

I was pretty pleased w/Dr. Bonnie & the eval's done but as she

mentioned I had already had everything in tact before taking out

there but still it gave me such a push I needed documented with the DS

clinic to help with services out here in our community which in reality

nowadays can be done anywhere whoever has clinics who worked w/many

individuals with autism & fingers cross that are also knowledgeable about

Down syndrome, can not stray away from the DS medical traits. Dr.

did not push the R drug as she noticed based on her recommendation to

continue with the specialized services I already had in line for him but I

did ask if she would not mind adding that she could recommend the R-drug as

I still like to have *options* if needed as a last resort which she gladly

did not mind giving a prescription if needed.

Never had to seek this route, there were a couple of close calls but then

our local circle of doc's my son was seen by, would decline it when I wanted

to throw in the towel & they had taken other trial approaches which I am

glad they did which introduced me to where I am now. Of course there were

other doc's w/other opinions but they are no longer around as the doc's keep

in me line & sure enough when some positive progress or testing are shown,

this gets me back on track where needed.

Of course currently within the years it is all a different ball game which I

am pleased for now, well I am just going to leave this as is for now.

Just glad everyone is sharing your input on this topic as we live & learn

and know that there are options compare to better than nothing.

Irma,21,DS/ASD

>

>

> Beofre I would spend the enormous amount of money needed to get to BALT and

> housing, etc for KKI's opinion, I would certainly search the west,.

> California - anyone know of good people out there? there are major research

> facilities outs there. Joan - if you are listening - I know you love KKI

> but what doyou know about the west?? Heck - maybe even British Columbia??

>

> Seems to me, one could travel for Europe cheaper than to get from Hawaii to

> Balt - I just looked up some airfares and was absolutely floored@!!!!

>

> On Fri, Jan 15, 2010 at 10:43 AM, Anne Haroun

<tabuhli@...<tabuhli%40live.com>>

> wrote:

>

> >

> >

> >

> > Dear Margaret,

> > Yes that is how I believe help will be found if we are free to give our

> > strong opinions....and still accept each other....hee hee....I have

> joined

> > here at the heighth of my own despair (lucky you all) though balanced

> with

> > the joy that Wesley's heart has been repaired....

> > well C. has no trouble with bedside manner ...he is a sweet

> > dispositioned man....and he is cute too which can help you to accept more

> > readily all he says...I just did not like that everyone who walks out has

> > the suggestion for R when it IS a dangerous drug....and prescribed for a

> > child with a bad heart condition is wrong with a capital W........but in

> > your case gee how can anyone comment unless in your shoes....you used

> your

> > brain and got the help you needed.....

> > Wesley has been marked as self injurious.....he sucks on his hands and

> the

> > tissue gets damaged in the winter....that is the extent of it....to see

> him

> > bang his head or anything else would break my heart and I would want it

> > stopped....

> > anyway....I suppose we are on the same page ...feeling parents should

> think

> > and do their homework....and if Desi or anyone else would feel better to

> at

> > least check it out then it is worth every cent...even that visit I had ,

> > though I felt it was more a research appointment than a visit for the

> well

> > being of Wes, was I suppose good as I now know that place is ruled out as

> > far as a place to go for help on his development.....

> > I just think the terms DS - autism specialist and DS-autism researcher

> are

> > not one and the same and should be used appropriately....

> > Hugs back, truly,,....Annie

> >

> > > To: <%

> 40yahoogroups.com>

> > > From: duffey48@... <duffey48%40aol.com> <duffey48%40aol.com>

> > > Date: Fri, 15 Jan 2010 07:09:21 -0500

> > > Subject: Re: Anne

> > >

> > > Well, you KNEW I'd chime in, right??? LOL

> > > First of all, welcome Anne, from the supposed *co-moderater*, but we

> all

> > know that MB is in charge. I am here for those RARE brief moments when

> she

> > asks me to be.

> > > My take on KKI , , and all others is that like anything in life,

> a

> > good fit is needed. was a good fit for us, and I have a great deal

> of

> > respect and admiration for him. Regardless of how you feel about bedside

> > manner, rush to judgment, take on meds.....or whatever opinion folks come

> > away with, he is a man who is devoted to individuals with DS. And I have

> > always approached like any other medical professional I have dealt

> > with in the almost 29 years that I have been a mother.....they work for

> me.

> > *I* am the boss, and ultimately me and my family make decisions when it

> > comes to our own situation at the time. I recommend that parents read,

> > learn, ask questions, and make their own choices.

> > > Risperdal was a life-saver for us. Maybe for others, it merely made a

> > difference, maybe a slight one, maybe not at all, and maybe some had a

> bad

> > experience. Maddie was 9 years old, and heavily self-abusing. We

> > waited...and waited...and waited...and put off drugs, believing that

> > behavior techniques were what was needed. In the meantime, our baby was

> > headbanging and somersaulting herself into oblivion. My husband and I

> made a

> > decision that if we ever did the drug route, it would be for HER, not for

> > us. We made the decision, after MUCH deliberation and discernment, to try

> > risperdal. She stopped within 3 weeks. Certainly, it's not for everyone,

> but

> > it was the right one for her at the time.

> > > BTW, we no longer take Maddie to KKI. I love , and he has been

> very

> > very good to us (and continues to be), but I need to be more local, so

> > Maddie now sees Dr. Pippin at CHOP. So far so good.

> > > Welcome again Anne. We're a very diverse group with strong opinions, as

> > you can tell. But we are very supportive of each other, and of our

> varying

> > paths we take on this unique and challenging journey!!!

> > > Hugs,

> > > Donna

> > > > <<trying to find a reason to prescribe risperadol to my son....oh,

> only

> >

> > > > a " low dose " of this anti psychotic drug (that can grow breasts on

> > boys.) My

> > > > husband who is a physician is adamantly against this as am I for any

> > child to

> > > > be experimented on at this point with this drug>>

> > > >

> > > > Hi, Everyone....Anne....Everyone has their opinions here --- even

> > strong

> > > > ones that others don't agree with. That is OK. It's a shame that your

> > > > husband and you are so adamant about not trying the Risperdal ---

> yes,

> > in HIGH

> > > > doses it MAY cause breast development in males, but that is rare.

> > Gareth's

> > > > been on a low dose for over 10 yrs now and doesn't show any signs of

> > > > breast development. Study after study has shown that LOW doses of

> > Risperdal MAY

> > > > help SOME autistic kids with behavioral, SIB, and speech problems.

> > You're

> > > > new to the list and I won't bore you about my son's remarkable life

> on

> > > > Risperdal, but he's never been in a Life skills classroom, always in

> > regular

> > > > classes/learning support classes, wouldn't have gone to PSU Lifelink

> > > > (college for spec ed kids) without it, nor would he be talking today.

> > Like Sara's

> > > > Eli, he has tried many meds but the Risperdal/SSRI combo is what

> keeps

> > him

> > > > in our world and allows him to function and enjoy life. If meds don't

> > > > work for a kid, then you take them off of them, but at least one can

> > say they

> > > > tried.

> > > >

> > > > Take care, Everyone.

> > > > Magaret

> > > >

> > > >

[Guest guest]

From this description Desi, I would check your university environment for a

behavorial psychologist, school psychologist with behavior intervention

experience (that is where we found great help for Elie), a practice

affiliated with the university which offers a team approach of

education/behavior/medication. And if I didn't find it , I would then use

that money you are saving to see about hiring a person who could take

training in behavior management - before I traavel half the world.

But that just may be theory that our money needs to be spent as close to

home as possible, because this is where Elie will be living. So I would

rather hire and pay for training locally than travel for help that is not

local.

Then the question: does Hawaii higher education havae any programs you can

aget help from??

On Fri, Jan 15, 2010 at 3:48 PM, Desi McKenzie wrote:

>

>

> Oh my...reading all these emails I am so touched by all of your

> responses...I am still reading them...and hopefully some

> of you can also chime in as to where else you have gone for evals and how

> effective they've been...particularly with

> collaborating with your docs at home!!! Can you tell what my New Year's

> Resolution was this year?!

>

> I cannot begin to express my gratitude for all of your posts; your openness

> and frankness and ideas-

> particularly about trying to find a place closer to Hawai'i...but know that

> I would go to the ends of the earth to

> get my daughter what she needs. There are grants out there...

>

> It's hard to put what we're looking for into one sentence, but I can tell

> you that the urgent need to curb her repetitive behaviors and OCD

> behaviors-like the need to underline every sentence/line in a book ie a

> phonebook that keeps her up

> at night and interferes with her ability to read while distracted with this

> compulsion would probably be higher

> on the list at this point than even our need to curb her self-talking

> " alien " so we can spend more time in the world outside

> our doors...and untimately so she can have an easier time " fitting in " in

> her new middle school environment---

> Does this sound familiar to anyone?

>

> I always say she only has 'one pass on this planet' and I'm going to do my

> darndest to help her make the

> most out of it.

>

> I am now thinking about uploading this beautiful child's performance on You

> Tube so you all can see exactly

> WHO you're helping...

>

> MAHALO! MAHALO! MAHALO! and keep it coming!!

>

> IMUA! (Go forward!)

>

> Desi

>

> ________________________________

> From: Irma Canfield <itcanfield@... <itcanfield%40gmail.com>>

> To:

> Sent: Fri, January 15, 2010 6:29:56 AM

> Subject: Re: DESI

>

> Remember Kathy, 's mom, she is in Sacramento & could recommend some

> great doc's out there in CA.

>

> I'll email her for any information if Desi would not mind.

>

> Well, y'all know since finally had the opportunity of meeting Dr. Capone

> last year was very impressed as well but of course due to what

> benefits from with other avenues than what KKI has to offer, was just no go

> for him.

> Which I knew where Dr.Capone stood when I spoke to him. He was curious

> though to want to know more when individuals have autoimmune deficiencies,

> but will or not happen?

> I am grateful that he has helped many within whatever recommendation he has

> been able to help many who or where many failed them, better than not

> finding one that at least helped somewhere & the awareness of the DS & AU.

> But, many physicians who I have cross lately w/ who are the unknown,

> not recognized have actually been great which of glad to finally have such

> a

> relief.

> Guess, everything happens for a reason as KKI wanted out of pocket expenses

> & at that time I could not afford it & they did not accept our health

> insurance too, but this has been years back though. When I brought this up

> on the listserve, Joan recommended Dr. .

> I was pretty pleased w/Dr. Bonnie & the eval's done but as she

> mentioned I had already had everything in tact before taking out

> there but still it gave me such a push I needed documented with the DS

> clinic to help with services out here in our community which in reality

> nowadays can be done anywhere whoever has clinics who worked w/many

> individuals with autism & fingers cross that are also knowledgeable about

> Down syndrome, can not stray away from the DS medical traits. Dr.

> did not push the R drug as she noticed based on her recommendation to

> continue with the specialized services I already had in line for him but I

> did ask if she would not mind adding that she could recommend the R-drug as

> I still like to have *options* if needed as a last resort which she gladly

> did not mind giving a prescription if needed.

> Never had to seek this route, there were a couple of close calls but then

> our local circle of doc's my son was seen by, would decline it when I

> wanted

> to throw in the towel & they had taken other trial approaches which I am

> glad they did which introduced me to where I am now. Of course there were

> other doc's w/other opinions but they are no longer around as the doc's

> keep

> in me line & sure enough when some positive progress or testing are shown,

> this gets me back on track where needed.

> Of course currently within the years it is all a different ball game which

> I

> am pleased for now, well I am just going to leave this as is for now.

>

> Just glad everyone is sharing your input on this topic as we live & learn

> and know that there are options compare to better than nothing.

>

> Irma,21,DS/ASD

>

> On Fri, Jan 15, 2010 at 7:48 AM, Sara Cohen

<pastmidvale@...<pastmidvale%40gmail.com>>

> wrote:

>

> >

> >

> > Beofre I would spend the enormous amount of money needed to get to BALT

> and

> > housing, etc for KKI's opinion, I would certainly search the west,.

> > California - anyone know of good people out there? there are major

> research

> > facilities outs there. Joan - if you are listening - I know you love KKI

> > but what doyou know about the west?? Heck - maybe even British Columbia??

> >

> > Seems to me, one could travel for Europe cheaper than to get from Hawaii

> to

> > Balt - I just looked up some airfares and was absolutely floored@!!!!

> >

> > On Fri, Jan 15, 2010 at 10:43 AM, Anne Haroun

<tabuhli@...<tabuhli%40live.com>

> <tabuhli%40live.com>>

> > wrote:

> >

> > >

> > >

> > >

> > > Dear Margaret,

> > > Yes that is how I believe help will be found if we are free to give our

> > > strong opinions....and still accept each other....hee hee....I have

> > joined

> > > here at the heighth of my own despair (lucky you all) though balanced

> > with

> > > the joy that Wesley's heart has been repaired....

> > > well C. has no trouble with bedside manner ...he is a sweet

> > > dispositioned man....and he is cute too which can help you to accept

> more

> > > readily all he says...I just did not like that everyone who walks out

> has

> > > the suggestion for R when it IS a dangerous drug....and prescribed for

> a

> > > child with a bad heart condition is wrong with a capital W........but

> in

> > > your case gee how can anyone comment unless in your shoes....you used

> > your

> > > brain and got the help you needed.....

> > > Wesley has been marked as self injurious.....he sucks on his hands and

> > the

> > > tissue gets damaged in the winter....that is the extent of it....to see

> > him

> > > bang his head or anything else would break my heart and I would want it

> > > stopped....

> > > anyway....I suppose we are on the same page ...feeling parents should

> > think

> > > and do their homework....and if Desi or anyone else would feel better

> to

> > at

> > > least check it out then it is worth every cent...even that visit I had

> ,

> > > though I felt it was more a research appointment than a visit for the

> > well

> > > being of Wes, was I suppose good as I now know that place is ruled out

> as

> > > far as a place to go for help on his development.....

> > > I just think the terms DS - autism specialist and DS-autism researcher

> > are

> > > not one and the same and should be used appropriately....

> > > Hugs back, truly,,....Annie

> > >

> > > > To: <%

> 40yahoogroups.com><%

> > 40yahoogroups.com>

> > > > From: duffey48@... <duffey48%40aol.com> <duffey48%40aol.com>

> <duffey48%40aol.com>

> > > > Date: Fri, 15 Jan 2010 07:09:21 -0500

> > > > Subject: Re: Anne

> > > >

> > > > Well, you KNEW I'd chime in, right??? LOL

> > > > First of all, welcome Anne, from the supposed *co-moderater*, but we

> > all

> > > know that MB is in charge. I am here for those RARE brief moments when

> > she

> > > asks me to be.

> > > > My take on KKI , , and all others is that like anything in

> life,

> > a

> > > good fit is needed. was a good fit for us, and I have a great

> deal

> > of

> > > respect and admiration for him. Regardless of how you feel about

> bedside

> > > manner, rush to judgment, take on meds.....or whatever opinion folks

> come

> > > away with, he is a man who is devoted to individuals with DS. And I

> have

> > > always approached like any other medical professional I have

> dealt

> > > with in the almost 29 years that I have been a mother.....they work for

> > me.

> > > *I* am the boss, and ultimately me and my family make decisions when it

> > > comes to our own situation at the time. I recommend that parents read,

> > > learn, ask questions, and make their own choices.

> > > > Risperdal was a life-saver for us. Maybe for others, it merely made a

> > > difference, maybe a slight one, maybe not at all, and maybe some had a

> > bad

> > > experience. Maddie was 9 years old, and heavily self-abusing. We

> > > waited...and waited...and waited...and put off drugs, believing that

> > > behavior techniques were what was needed. In the meantime, our baby was

> > > headbanging and somersaulting herself into oblivion. My husband and I

> > made a

> > > decision that if we ever did the drug route, it would be for HER, not

> for

> > > us. We made the decision, after MUCH deliberation and discernment, to

> try

> > > risperdal. She stopped within 3 weeks. Certainly, it's not for

> everyone,

> > but

> > > it was the right one for her at the time.

> > > > BTW, we no longer take Maddie to KKI. I love , and he has been

> > very

> > > very good to us (and continues to be), but I need to be more local, so

> > > Maddie now sees Dr. Pippin at CHOP. So far so good.

> > > > Welcome again Anne. We're a very diverse group with strong opinions,

> as

> > > you can tell. But we are very supportive of each other, and of our

> > varying

> > > paths we take on this unique and challenging journey!!!

> > > > Hugs,

> > > > Donna

> > > > > <<trying to find a reason to prescribe risperadol to my son....oh,

> > only

> > >

> > > > > a " low dose " of this anti psychotic drug (that can grow breasts on

> > > boys.) My

> > > > > husband who is a physician is adamantly against this as am I for

> any

> > > child to

> > > > > be experimented on at this point with this drug>>

> > > > >

> > > > > Hi, Everyone....Anne....Everyone has their opinions here --- even

> > > strong

> > > > > ones that others don't agree with. That is OK. It's a shame that

> your

> > > > > husband and you are so adamant about not trying the Risperdal ---

> > yes,

> > > in HIGH

> > > > > doses it MAY cause breast development in males, but that is rare.

> > > Gareth's

> > > > > been on a low dose for over 10 yrs now and doesn't show any signs

> of

> > > > > breast development. Study after study has shown that LOW doses of

> > > Risperdal MAY

> > > > > help SOME autistic kids with behavioral, SIB, and speech problems.

> > > You're

> > > > > new to the list and I won't bore you about my son's remarkable life

> > on

> > > > > Risperdal, but he's never been in a Life skills classroom, always

> in

> > > regular

> > > > > classes/learning support classes, wouldn't have gone to PSU

> Lifelink

> > > > > (college for spec ed kids) without it, nor would he be talking

> today.

> > > Like Sara's

> > > > > Eli, he has tried many meds but the Risperdal/SSRI combo is what

> > keeps

> > > him

> > > > > in our world and allows him to function and enjoy life. If meds

> don't

> > > > > work for a kid, then you take them off of them, but at least one

> can

> > > say they

> > > > > tried.

> > > > >

> > > > > Take care, Everyone.

> > > > > Magaret

> > > > >

> > > > >