Re: Re: I have to come to some type of resolution

[Guest guest]

Not sure about the website but the tel # is 315-773-5405.

_____

From: [mailto: ] On Behalf Of

and Freeman

Sent: February 22, 2011 2:17 PM

Subject: FW: Re: I have to come to some type of resolution

Can anyone tell me why the NNY Autism Center's website is not working? Also,

does anyone a CURRENT phone number for Dr. ? Does he do phone

consults? Thanks!

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf Of

RobinW

Sent: February-22-11 4:05 AM

<mailto:%40>

Subject: Re: I have to come to some type of resolution

This is the first mail I've been able to respond to for the last few weeks

and it's because I'm in almost the exact same place. My son has a 11.5 yo

body, a 14-15 yo mind, and a 7 year old social and emotional status. We have

seen so much clarity with the meds from Dr. and I have to

constantly remind myself that what we are doing now is cleaning up those

years he missed out on because of the PDD/Aspergers. We have had so many

behavioral issues at school this year but he's flying through the

curriculum. We found someone to do CBT therapy but she stipulates we have a

classroom shadow to make sure the sessions are followed through, given we

live out of the US we are looking at about $300 a day minimum...I can't even

afford one month because our insurance doesn't cover shadows. On the flip

side I can't not afford it if we want this gap closed in the most efficient

manner without spending more money undoing what he's learning now. You

should remember that for the past 5 years Cam had to be medicated with

Risperdone and Concerta was added to the mix because of his violence level.

This last summer we took him off of all of it...he was a total zombie.

Friday Cam ended up with half a day of in school suspension and half a day

of out of school suspension for fighting. He wasn't the one who threw the

first punch but he egged it on by not giving the other boy a paper he found

on the floor. The other boy got the same punishment, which I questioned

since he threw the first punch but given this is the same boy all the

problems have been with and the level of Cam's reaction (Cam had to held

down by a couple of high school boys) they felt they both needed some

reflection.

I hadn't even gotten home from dropping him off at school when this all went

down. Left my cell phone at home since Patrice is out of town and I was

dropping them off so when I got home I had a message on the house phone from

my Mom. Cam couldn't get me so he called her in the US! Had to turn around

and go back. Turns out the duty teacher was late so no supervision before

school didn't help the situation but that is being handled separately.

This kind of thing is starting to occur more often and with the onset of

puberty it's common even for healthy kids. What's tough is when it seems

like everyone is against your kid and they don't really understand to what

lengths you go to help him. Just one more wall for them climb once they

overcome any of the social issues.

Sometimes I wish I was past the crying stage like you...I just start welling

up every time I think about him. I see so much potential but keep running up

against this wall and while my husband works his butt off to afford what he

needs, I'm pretty much on my own for implementation. I'm not the kind of

person to throw in the towel but I worry about what my other child is

loosing out on, to what detriment is my marriage because of the stress,

etc.?

The only thing I see differently with Cameron is he is on an anti-depressant

because he is deemed high risk for suicide because of his own frustration

with himself and he takes Lamisil because of his med combination. We are

currently waiting on some supplement meds to arrive from the US under the

guidance of Dr. R. He wants us to add 30 mg. of DM twice a day. DM is a

glutamate suppressant and he thinks it's highly possible that the lack of

impulse control could be due to an excess in glutamate. To test this we need

to give him a dose of Desryl (an over the counter cough medicine with DM

added) twice a day and monitor the results. These kinds of things have made

a difference with Cameron in the past so I'm hoping it's what we need to

peel off another layer of his never ending onion of a problem.

As I look back for the last 8 years though, that onion is considerably

smaller...we've gone from an Outback blooming something to a little bit less

than medium sized one. I don't know about fees, but I've found Dr. 's

to be very affordable compared to many of the other treatments we've tried.

The meds for the most part are reasonable as well...but I pick up the

Valtrex in Mexico when I go home to Texas for summers.

I don't know if any of that can communicate to you, but I just wanted to let

you know you're not alone and I'm sure there are many more out there like

us...we just have our hands so full we are doing good to lurk little lone

post. That's why I'm so appreciative to people like Marcia and who

are constants and can help me see there is a future because right now I feel

like I'm clawing my way out of a well and my fingers are nubs.

>

> I am at the point where I have to come face-to-face with the fact that our

> son just might not get any better. Financially we are

drained...emotionally,

> well I don't even know if I have any emotions left. I came to grips with

the

> fact that was not being 'bad' because of bad parenting just this

year

> (I think..). I came to grips with it but it still hurts a lot when he

can't

> even be left alone without destroying things, making fun of other kids or

> just being hard to be around.

>

>

>

> Today I let him travel with my friend and her son in her van. It was a

> complete disaster. As soon as he got in the van he started picking at her

> son and then flinging her purse around the van. She said she had to pull

> over and speak to him several times. I can't put him into any group

> activities because he is too old to have me supervising for most of them

and

> he is too hyperactive and mean-spirited to the other kids for the leaders

to

> take him. We tried Beavers last year and I was the Beaver Leader so that I

> could keep my eye on him. I could not put him Cubs this year as I know he

> would be too disruptive to the class and they don't allow me supervise.

>

>

>

> It breaks my heart and I feel that it may be too late to help him. We have

> tried, and are trying, as best as we can. We can't afford to fly to

Dr.

> G and we aren't seeing a lot of change with while on milk-free, low

> sugar, Nystatin, Valtrex, etc. He is still as hyper and mean-spirited as

he

> was when he was 2...not a lot has changed. I feel like he is missing out

on

> so much in his life. A child who could read at 2 and do chess at 4 but

can't

> be left alone for a minute because he might hurt another human being and

> grin about it while doing it. I am having a bad day but it isn't unlike

many

> others. I don't have my 'cry spot' anymore but that doesn't mean I would

> like to ball up and cry in one tonight.

>

>

>

>

[Guest guest]

I have LDN but want to stick to the protocol. Is this something Dr. G

approves of?

From: [mailto: ] On Behalf Of

Pedersen

Sent: February-23-11 2:09 AM

Subject: Re: I have to come to some type of resolution

I think Dr. G often perscribes something for hyperness (is it Tenex?...

maybe someone else knows... could possibly be a help)... also even though

Dr. G doesn't really like this one our son had huge mood/coping improvements

from Low Dose Naltrexone.

[Guest guest]

Dr. G is using Intuniv with our middle son. It is the extended-release version

of tenex. I couldn't believe the difference in him.

Robyn

From: Sloan <Sloan_smith@...>

Subject: Re: I have to come to some type of resolution

Date: Thursday, February 24, 2011, 7:13 PM

 

Dr. g has a big problem with LDN... mostly I think because there are not

any studies showing long-term effect in children. He thinks it might be

dangerous. At least thats what he told me when I inquired about it.

And he does use Tenex for hyperness/concentration issues.

>

> I have LDN but want to stick to the protocol. Is this something Dr. G

> approves of?

>

>

>

> From: [mailto: ] On Behalf Of

> Pedersen

> Sent: February-23-11 2:09 AM

>

> Subject: Re: I have to come to some type of resolution

>

>

>

>

>

> I think Dr. G often perscribes something for hyperness (is it Tenex?...

> maybe someone else knows... could possibly be a help)... also even though

> Dr. G doesn't really like this one our son had huge mood/coping improvements

> from Low Dose Naltrexone.

>

>

[Guest guest]

My son has been on Tenex off and on. Dr. G has prescribed it for him to help

control impulsivity and it really works.

Kristy

From: [mailto: ] On Behalf Of Sloan

Sent: Thursday, February 24, 2011 7:13 PM

Subject: Re: I have to come to some type of resolution

Dr. g has a big problem with LDN... mostly I think because there are not any

studies showing long-term effect in children. He thinks it might be

dangerous. At least thats what he told me when I inquired about it.

And he does use Tenex for hyperness/concentration issues.

>

> I have LDN but want to stick to the protocol. Is this something Dr. G

> approves of?

>

>

>

> From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf Of

> Pedersen

> Sent: February-23-11 2:09 AM

> <mailto:%40>

> Subject: Re: I have to come to some type of resolution

>

>

>

>

>

> I think Dr. G often perscribes something for hyperness (is it Tenex?...

> maybe someone else knows... could possibly be a help)... also even though

> Dr. G doesn't really like this one our son had huge mood/coping

improvements

> from Low Dose Naltrexone.

>

>

[Guest guest]

You know, I think I remember something about concerns that it could either

increase or degrade the number of opiate receptors in the brain with long-term

use - just a speculation that can't be proven, but based on other risks from

other meds. For instance,  long-term use of opiates themselves have a lot of

consequences, and even though LDN isn't a true opiate, it could potentially have

the same impact.  We don't want to create little addicts or adrenaline

junkies later in life (not necessarily what would happen), nor would we want to

diminish things that help them feel joy or pain relief etc. 

One of those 'we just don't know' things, and some of these classes of meds

aren't too nice to play around with.

________________________________

From: Pedersen <mpedestrian@...>

Sent: Thu, February 24, 2011 10:48:18 PM

Subject: Re: I have to come to some type of resolution

 

He has wanted us to get rid of the LDN. Though because the difference for our

son was night and day, he has been willing to wait until we have SSRI up to full

dose to see if that takes the place of it. I would like to remove it, but if we

see immediate regression, it will be difficult.

So, long story short, no he doesn't like it... he feels that the effects are

unknown on a developing brain. He has been willing to let us continue it for the

time being, with the goal of removing it once SSRI's are doing the same thing

for his mood/tantrums.

[Guest guest]

Hey Robyn,

Does (or did) your son have any irritability/aggression/depression on the

regular Tenex before going to extended release?  We keep stopping Tenex in my

oldest son because weeks or months into it, he steadily gets more and more

irritable (that, and soy).  I'm just curious if the extended release would have

the same effect.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Thu, February 24, 2011 9:19:01 PM

Subject: Re: Re: I have to come to some type of resolution

 

Dr. G is using Intuniv with our middle son. It is the extended-release version

of tenex. I couldn't believe the difference in him.

Robyn

From: Sloan <Sloan_smith@...>

Subject: Re: I have to come to some type of resolution

Date: Thursday, February 24, 2011, 7:13 PM

 

Dr. g has a big problem with LDN... mostly I think because there are not any

studies showing long-term effect in children. He thinks it might be dangerous.

At least thats what he told me when I inquired about it.

And he does use Tenex for hyperness/concentration issues.

>

> I have LDN but want to stick to the protocol. Is this something Dr. G

> approves of?

>

>

>

> From: [mailto: ] On Behalf Of

> Pedersen

> Sent: February-23-11 2:09 AM

>

> Subject: Re: I have to come to some type of resolution

>

>

>

>

>

> I think Dr. G often perscribes something for hyperness (is it Tenex?...

> maybe someone else knows... could possibly be a help)... also even though

> Dr. G doesn't really like this one our son had huge mood/coping improvements

> from Low Dose Naltrexone.

>

>

[Guest guest]

Interesting question...I can't really say about Tenex and irritability and

aggression. Noah was put on Tenex by his first neuro years before we saw Dr. G.

Since starting Intuniv, though, he is much more agreeable. He used to have

tantrums if he wanted something and I said no. This would go on intermittently

for a couple of hours. He wouldn't tantrum the whole time, but when he had a

second to think about, he would start again. Now it's much easier to " derail "

that kind of behavior and he responds better to discipline, such as sitting on

the stairs until he's calm.

I hope this helps.

Robyn

From: Sloan <Sloan_smith@...>

Subject: Re: I have to come to some type of resolution

Date: Thursday, February 24, 2011, 7:13 PM

 

Dr. g has a big problem with LDN... mostly I think because there are not any

studies showing long-term effect in children. He thinks it might be dangerous.

At least thats what he told me when I inquired about it.

And he does use Tenex for hyperness/concentration issues.

>

> I have LDN but want to stick to the protocol. Is this something Dr. G

> approves of?

>

>

>

> From: [mailto: ] On Behalf Of

> Pedersen

> Sent: February-23-11 2:09 AM

>

> Subject: Re: I have to come to some type of resolution

>

>

>

>

>

> I think Dr. G often perscribes something for hyperness (is it Tenex?...

> maybe someone else knows... could possibly be a help)... also even though

> Dr. G doesn't really like this one our son had huge mood/coping improvements

> from Low Dose Naltrexone.

>

>