Re: Re: Latest Psych Visit......

[Guest guest]

was on Ritalin and Dexedrine for the ADHD part of his diagnosis. We went

to Dexedrine because he needed more Ritalin than his body weight would allow.

Then we dropped the Dexedrine down to 5mg twice a day and added Risperdal.

Since going gluten free, we've dropped the Dexedrine all together.

Loriann

[Guest guest]

^ Holding hand up here also! My son who has down syndrome, autism, and adhd

is now on Risperdal, clonidine, and depokote. I too am wondering what else

is out there!

Thanks!

Jeannie

[Guest guest]

In a message dated 8/2/00 4:30:40 PM Pacific Daylight Time,

stolzfamily@... writes:

<< Jeannie and all,

Ask about Naltrexone. Matt has been on it for more than 5 years now, and

it works great for him. He is currently on Naltrexone and Risperdal.

S >>

Thanks

We did try this now that I think of it, Mark cried for the whole 2 weeks he

was on it. Would not eat. We have gone the ritilan route also, he would not

eat on it either. My son is small, only 50lbs. as it is and he is 10. He

was in a group home for 6 months so I could regain my sanity and get our

family back together. We have a daughter who just turned 9, kids are 15

months apart. Mark comes home Sept 2nd. The state of CA was paying the

caregiver 4K a month...The kicker is I am going to have to fight to get my

sons SSI, I thought I could hire a nanny to help me out and would save the

state the mega bucks they pay for him being in a group home. Please send me

some positive vibes and good luck!

Jeannie

[Guest guest]

OH MY GOD LAURA!! HUGS, CHOC AND VODKA OR WHATEVER ! what is that weird

drink you drink?????? i forget.....but even though the day was stressful as

hell, maybe its better you got all that stuff off yourself and spoke directly

to the doctor about how your truly feeling....... it doesnt help to let it

fester inside and not pop the bubble......... maybe its better you go to that

" special needs " doctor NOW.....doesnt seem like that itit you have been

seeing is much help....jmho i hope you get some peace and i am with you

.......leah

[Guest guest]

In a message dated 8/2/00 5:30:59 PM Pacific Daylight Time,

hsmyangel@... writes:

<< Since going gluten free, we've dropped the Dexedrine all together. >>

So do tell, was going gluten free extremely hard? My son is addicted to

pasta of all kinds shapes and sizes. Also is a cereal freak

Thanks,

Jeannie

[Guest guest]

On Wed, 2 Aug 2000 19:20:24 EDT JVal987@... writes:

> ^ Holding hand up here also! My son who has down syndrome, autism,

> and adhd

> is now on Risperdal, clonidine, and depokote. I too am wondering

> what else

> is out there!

> Thanks!

> Jeannie

>

> -

Jeannie and all,

Ask about Naltrexone. Matt has been on it for more than 5 years now, and

it works great for him. He is currently on Naltrexone and Risperdal.

S

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[Guest guest]

There are several companies that make rice pasta,(macaroni, rotti, lasagna,

spirals, spagetti). And they make them out of potato and corn also.

Cereal is harder for us--but JJ loves his Cocoa Blasters

& Garry, parents of (9 ds), (8 ds/g-tube), JJ (6

ds/autism/celiac), (5 ds), and Esther (3 ds). All adopted.

----------

>From: JVal987@...

>egroups

>Subject: Re: Re: Latest Psych Visit......

>Date: Wed, Aug 2, 2000, 5:06 PM

>

>In a message dated 8/2/00 5:30:59 PM Pacific Daylight Time,

>hsmyangel@... writes:

>

><< Since going gluten free, we've dropped the Dexedrine all together. >>

>So do tell, was going gluten free extremely hard? My son is addicted to

>pasta of all kinds shapes and sizes. Also is a cereal freak

>Thanks,

>Jeannie

[Guest guest]

jeannie, i have been using rice pasta and its completely gluten free...its

really good and not to expensive

[Guest guest]

jeannie,

also " envirokidz " cereal from whole foods or fresh fields isnt bad, they have

koala krunch and its very reasonable and taste good.....also gluten free and

ashton has some waffles that are apple cinnamon flavored but gluten free and

egg free.......

[Guest guest]

In a message dated 8/2/00 5:10:31 PM Central Daylight Time, Ltb3105@...

writes:

<< . " changes...they are a-coming! " >>

, sometimes change, although difficult, is good. Seems to me you need a

fresh start with a different doc/different practice. Sorry your appointment

was so difficult. Hang in there,

Maureen

[Guest guest]

In a message dated 8/2/00 6:20:48 PM Central Daylight Time, JVal987@...

writes:

<< My son who has down syndrome, autism, and adhd

is now on Risperdal, clonidine, and depokote. >>

Jeannie, how is he doing on this combo of meds? My , who has the same

three diagnoses, used to be on depakote and is now on risperdal. We've never

tried clonidine.

Maureen

[Guest guest]

In a message dated 8/2/00 6:31:00 PM Central Daylight Time,

stolzfamily@... writes:

<< Ask about Naltrexone. Matt has been on it for more than 5 years now, and

it works great for him. He is currently on Naltrexone and Risperdal. >>

, what kind of drug is Naltrexone? Is it an anti-psychotic?

Maureen

[Guest guest]

In a message dated 8/2/00 6:37:17 PM Central Daylight Time, JVal987@...

writes:

<< Please send me

some positive vibes and good luck! >>

Positive vibes and prayers for good luck coming your way, Jeannie. It sounds

like you are having a very rough time. I can understand having to consider

the group home option when the situation gets out of hand - we began checking

out a residential placement for last year before we had the autism

diagnosis. Things were really bad then and we felt like our family was

falling apart. It was also before we had any respite help (in-home support).

Respite has made a tremendous difference for us. Have you checked with your

county or state to see if there is an in-home support service provider near

you? Here in Illinois you contact the county social worker who visits and

evaluates your family situation and then applies for funding from the state.

It took us about a year and a half to get funded, but things have definitely

improved for us since then. In Illinois and some other states the program is

for children who would most likely need a residential placement without it.

Did you go through a county or state social worker for your son's temporary

placement? Just an idea. My heart goes out to you,

Maureen

[Guest guest]

In a message dated 8/3/00 8:06:29 PM Pacific Daylight Time, MRASMUS@...

writes:

<< Jeannie, how is he doing on this combo of meds? >>

Maureen,

He seems calmed somewhat...still think there has to be a combination out

there to do a better job, or at least one or two meds, I am not happy with

him on 3 meds. We are going to try a new doctor next month. He still needs

constant supervision, can be destructive...that is the hard part, he throws

for the shear enjoyment of it ;(

Jeannie

Mom to Mark and

[Guest guest]

In a message dated 8/3/00 10:43:05 PM Central Daylight Time, JVal987@...

writes:

<< He still needs

constant supervision, can be destructive...that is the hard part, he throws

for the shear enjoyment of it ;( >>

Boy, does this sound like my !

Maureen

[Guest guest]

Jeannie,

We've also used respite even though we were going to be home, just to have a

garage sale.

[Guest guest]

Naltrexone is an opiod antagonist. It blocks the action of natural or

artificial opiates.

S

On Thu, 3 Aug 2000 23:07:20 EDT MRASMUS@... writes:

> In a message dated 8/2/00 6:31:00 PM Central Daylight Time,

> stolzfamily@... writes:

>

> << Ask about Naltrexone. Matt has been on it for more than 5 years

> now, and

> it works great for him. He is currently on Naltrexone and

> Risperdal. >>

>

> , what kind of drug is Naltrexone? Is it an anti-psychotic?

>

> Maureen

>

>

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[Guest guest]

Maureen,

We did clonidine first. JJ got sleepy and only went poop about 2 times a

day. The poop was the best part after changing him 8 times a day.

& Garry, parents of (9 ds), (8 ds/g-tube), JJ (6

ds/autism/celiac), (5 ds), and Esther (3 ds). All adopted.

[Guest guest]

arent psych's the worst, they only play a guessing game, i wonder actually

how many people they actually help, we have had similar probs with nathan,

and no more meds to try, the ritalin works well for him, have you tried

that, its similar to adderal, even nathans teachers can tell when it has

worn off and when his next dose takes effect, they can time it, lol, anyways

nathan has had that ekg done several times too, i think , if remember right,

for imipramine, and one that started with a " t " cant remember, but know it

when i hear it, just know he had horrible side effecct of his skin peeling

off it was awful, but a rare side effect, even clonidine is used for blood

pressure, many of the drugs they try on our kids are for adults with no

known effects of children. shawna.

>From: Ltb3105@...

>Reply-egroups

>egroups

>Subject: Re: Latest Psych Visit......

>Date: Wed, 2 Aug 2000 18:09:16 EDT

>

>Thought you'd all like to hear how 's visit with the psych went......as

>you all know, this is the head honcho over Child Psychiatry at our FW

>Children's Hospital.....

>

>Told the doc how unhappy I was with the last bm therapist and that we

>weren't

>going to get anywhere until is somewhat " controlled " ....also told him

>that since was " free " of any stimulant med's this whole summer long,

>that we should begin to focus on another ADHD med as the Adderral and

>Clonidine combo he was taking last school year didn't cut it.

>

>He said we have almost exhausted the round of med's for ADHD and that after

>9

>visits, we are no better than when we first came to him.....last year, this

>doc said not to worry, there were PLENTY of med's we could try if this and

>that doesn't work! So far, has only been on Tofranil, Adderral and

>Clonidine....this is ALL there is?

>

>He said we would try Wellbutrin, and that was it.....next appt. is in Oct.,

>at which time, he will make a determination on whether he will continue to

>see or refer him to a clinic in Dallas, where there are doctors that

>just deal with " special needs " kids.

>

>Strangely, I wasn't upset....guess I knew it was coming.....and DH was with

>me and was irritated by the fact that our appt. was 2:40 and we didn't even

>get called by the nurse until 3:30!! Needless to say, (and us) was a

>basket case..... went into full meltdown and drove us nuts the whole

>time

>we waited.

>

>I also told the doc his office procedures and management left a lot to be

>desired.....phone calls being returned two and three days later, office

>staff

>not cooperating with paperwork needed by me for the state assistance,

>etc.....he gave me a card and said to voice my complaints with the office

>manager! So he doesn't even deal with this then??

>

>Maybe it's for the best.....oh, he did mention doing an EKG on ,

>because

>he did say there were other med's, but that they had to get an accurate

>reading on his heart before he can recommend these med's to make sure

>'s

>heart could withstand these med's......was so tired and frustrated at the

>long wait, that I just wanted out of there and didn't even ask what these

>other med's were! Does anyone out there know?

>

>Sorry for the long post......but I knew in my heart of hearts from the

>start

>that me and this doc weren't gonna hit it off.....same thing with the bm

>therapist..... " changes...they are a-coming! "

>

>Thanks for listening,

>

>

>

>

>

[Guest guest]

I found a site once it was dual diagnosis or disability solutions, or

something and they discussed many of the SSRI's and their effects etc, i

also found reading this they said that eating grapefruit/or juice is a

natural SSRI without the side efffects, but nathan wont drink it too tart,

and cant eat it chokes often, but i do keep trying to see if it will help.

shawna.

>From: JVal987@...

>Reply-egroups

>egroups

>Subject: Re: Re: Latest Psych Visit......

>Date: Wed, 2 Aug 2000 19:20:24 EDT

>

>^ Holding hand up here also! My son who has down syndrome, autism, and

>adhd

>is now on Risperdal, clonidine, and depokote. I too am wondering what else

>is out there!

>Thanks!

>Jeannie

>

>

>

>

[Guest guest]

we've been trying to go gluten free this summer other than the bread its

been ok, but having a hard time finding any ingredients around, other than

on line, and nathan is a bread freak, its about his only food group, he

chokes and gags easily on most any other food, even if i puree it, he will

still gag on it, pasta is one of the worsts for him, and he wont touch

cereal so that part was easy, but still working on the bread part, and

learning what to shop for, its quite a learning adventure for us, but we

wont now real effects until we are completely gluten free, hopefully soon.

shawna.

>From: JVal987@...

>Reply-egroups

>egroups

>Subject: Re: Re: Latest Psych Visit......

>Date: Wed, 2 Aug 2000 21:06:18 EDT

>

>In a message dated 8/2/00 5:30:59 PM Pacific Daylight Time,

>hsmyangel@... writes:

>

><< Since going gluten free, we've dropped the Dexedrine all together. >>

>So do tell, was going gluten free extremely hard? My son is addicted to

>pasta of all kinds shapes and sizes. Also is a cereal freak

>Thanks,

>Jeannie

>

>

>

>

[Guest guest]

we tried clonidine a while back and nathan became more agressive. shawna

>From: " Scherbert " <Scherb@...>

>Reply-egroups

>egroups

>Subject: Re: Re: Latest Psych Visit......

>Date: Thu, 03 Aug 2000 20:07:55 -0800

>

>Maureen,

>We did clonidine first. JJ got sleepy and only went poop about 2 times a

>day. The poop was the best part after changing him 8 times a day.

>

>

> & Garry, parents of (9 ds), (8 ds/g-tube), JJ (6

>ds/autism/celiac), (5 ds), and Esther (3 ds). All adopted.

>

>

>

>