Re: ssri's/hope

[Guest guest]

Hi Petra,

In HIV infection, there is documentation of a loss of cognitive skills (measured

by IQ I think) in addition to other behaviors and speech symptoms that sound

just like autism, even referred to as autistic like behaviors, and they have

published studies showing that the problems resolved after anti-retro-viral

therapy.

In Chronic Fatigue Syndrome, there is documentation that people can lost 20 or

more IQ points at the onset of their illness.

Neuroimmune dysfunction does affect higher executive functions in addition to

other things.

You shouldn't give up a cautious hope.  My boys are doing better than I could

have hoped, and most problems now don't compare to how it was before, and

parents (Marcia) who have been here before us have said that at the age my boys

are (9 & 12), there were still a lot of social and behavioral issues to work thru

on that road to recovery.  So I have no reason to not hope for even more

improvement.  I get scared, yes, but my fears now are more that I won't get

them

'better' in time for the teenage years where I lose a little control of diet,

not that they won't be able to function.  Now I'm starting to worry more about

their spiritual and emotional health (at least my oldest's) - we have a lot

more

work to do there.  I worry that I won't get myself in shape to have more energy

to be a better parent.  I couldn't have imagined where we are when my oldest

was

3 & 5 and such.

I've seen another child (nids but parents don't accept it yet because he also

has fetal alcohol syndrome and they believe that's the primary cause) who has a

diagnosis of borderline MR, but I watch this child, and I can't believe that. 

He had to have had poor mental functioning, and while yes, he has some

dysfunctions, he is a lot more intelligent than those tests would show.  I've

seen some of the things we observe in (higher brightness and improved mood

and behavior with a fever, improvements with diet changes), and I hope to get to

see them follow the path when more research comes out. 

I hope XMRV pans out and we have something we can fight more directly.

And btw - re kids with HIV making improvements, as well as nids kids, they can

improve even when started at older ages.  So we still have time, too.

Hope that helps,

________________________________

From: Gage Vanlandingham <gager292@...>

Sent: Wed, December 8, 2010 7:12:22 AM

Subject: Re: ssri's

 

I have read so many of these emails regarding the use of SSRI's and they all

seem so supportive of their use to the point that they seem to be represented

as

a miracle drug. I really appreciate all the information that I have learned

regarding the SSRI's and I am eager to try to get my MD to look at the

protocol and to try the SSRI's with my daughter. No one has shared much about

the cognitive staus of their kids. My daughter is on the " spectrum " labeled as

mild MR but she spits out words like metallic and tells me its meaning and then

goes back in to her world of nonsense garble. Has any of your children had a

similar label and improved dramatically? I will not let myself believe that a

miracle can happen such as she can fully recover because I would have to accept

that I let her down if it does not happen. I do know I will continue to try

anything that can help her if it is in reason and safe. I want her to be the

most she can be for her.

I love her as she is now but I worry about her future. Please share any info you

are willing to.

 

 

Thanks,

Petra 

Hi Sheryl,

I personally always had bad reactions to SSRIs, but I recommitted over and over

to trying them again, until I landed w/an SNRI that did well until I developed a

stomach problem (maybe not related - I developed an allergy to half of

everything I was taking and eating at that time).

The first time, the SSRI was a bit rough, but leveled out quickly. Once one was

pretty bad and got stopped immediately.

Sometimes it seems like the med is giving a horrible reaction, you're terrified,

the child is freaking out, and the crazy doctor tells you to up the dose. For

some reason, you actually do it like he suggests (because you know he's got to

be kidding), and they come out on the other side doing soooo much better that

you decide it was worth every moment of fear and stress.

We had a few rough tries, I had a few times of stress where I couldn't figure

out what was good, bad, med, food, up, down, sideways... but SSRIs are almost

always a benefit - very few can't get settled on them. They're neuroprotective,

immune modulating, and show that they increase blood flow to the parts of the

brain lacking. They improve eye contact, connectedness... the reason I keep on

trying them is because I've studied what they can do and I've seen it in my

kids.

It was by far the most frightening part of the protocol. We were off them a

couple of years, and my youngest went on Effexor when ssri wasn't doing enough.

He had been so whiney and soooo OCD for so long that when we started this one

(an SNRI, and did it because I had done so well on it for a year). I've

forgotten what that child was like, what level of obsession and despair when he

couldn't get what he was obsessing about. They only time I see it and remember

it now is when he gets sick and can't take his med for a couple of days - then

I'm like " Oh yeah! That's why he's on this. "

No, not everyone has a bad time. They don't post " Help! " to the list much

either. We don't hear as much from the ones that get it nice the first

time. Most of them were fine for both my boys.. we'd just switch around and

mess with doses to see if another would do even better.

Hope that helps...

________________________________

From: Sheryl <ssaturnino@...>

Sent: Tue, December 7, 2010 12:28:03 AM

Subject: ssri's

Dear Listmates,

I need to hear from you regarding ssri's. Does every one have a hard time after

starting them? Have your kids worked through a tough time on one or did you

switch and things got better?

If they do have an awful reaction, once you quit it, does the child become his

self again quickly?

I confess, this just freaks me out. My son was on Keppra for siezures and even

though he was only 4 years old, he said he was " sad " . I called the doctor and

got him off of that so quickly.

So I am just afraid of the suicidal thoughts Bill described and the violence

that another has recently described. This is a real hurdle for me in starting

this protocol. All comments and experiences will be most welcome and

appreciated.

Thank you! Sheryl

[Guest guest]

My girl is 11 yrs old and we have been doing the biomed approach for 2 years

with some improvement. She suffers from high anxiety and reflux in addition to

all her learning and language issues, plus stimms all the time. The stimming did

not start until she was 6yrs almost 7 which is abnormal. I know something

changed and caused her to develoop this behavior. I hope that her biomedical MD

will be willing to try the protocol. She seems to be open minded and

willing to listen to what I have to say. She also has an autistic son. Those

affected seem to listen to " us moms " more. I really think Sydni will benefit

from the protocol. Her first labs almost 2 yrs ago showed a very low count

of NK cells and we tried to do another panel earlier this year but the blood

hemolized. I am going to get her to draw them again. I do not think this MD paid

enough attention to that value. Thanks for your encouragement and I hope Sydni

will see great results in

the end.

Thanks !

 

Petra

Hi Sheryl,

I personally always had bad reactions to SSRIs, but I recommitted over and over

to trying them again, until I landed w/an SNRI that did well until I developed a

stomach problem (maybe not related - I developed an allergy to half of

everything I was taking and eating at that time).

The first time, the SSRI was a bit rough, but leveled out quickly. Once one was

pretty bad and got stopped immediately.

Sometimes it seems like the med is giving a horrible reaction, you're terrified,

the child is freaking out, and the crazy doctor tells you to up the dose. For

some reason, you actually do it like he suggests (because you know he's got to

be kidding), and they come out on the other side doing soooo much better that

you decide it was worth every moment of fear and stress.

We had a few rough tries, I had a few times of stress where I couldn't figure

out what was good, bad, med, food, up, down, sideways... but SSRIs are almost

always a benefit - very few can't get settled on them. They're neuroprotective,

immune modulating, and show that they increase blood flow to the parts of the

brain lacking. They improve eye contact, connectedness... the reason I keep on

trying them is because I've studied what they can do and I've seen it in my

kids.

It was by far the most frightening part of the protocol. We were off them a

couple of years, and my youngest went on Effexor when ssri wasn't doing enough.

He had been so whiney and soooo OCD for so long that when we started this one

(an SNRI, and did it because I had done so well on it for a year). I've

forgotten what that child was like, what level of obsession and despair when he

couldn't get what he was obsessing about. They only time I see it and remember

it now is when he gets sick and can't take his med for a couple of days - then

I'm like " Oh yeah! That's why he's on this. "

No, not everyone has a bad time. They don't post " Help! " to the list much

either. We don't hear as much from the ones that get it nice the first

time. Most of them were fine for both my boys.. we'd just switch around and

mess with doses to see if another would do even better.

Hope that helps...

________________________________

From: Sheryl <ssaturnino@...>

Sent: Tue, December 7, 2010 12:28:03 AM

Subject: ssri's

Dear Listmates,

I need to hear from you regarding ssri's. Does every one have a hard time after

starting them? Have your kids worked through a tough time on one or did you

switch and things got better?

If they do have an awful reaction, once you quit it, does the child become his

self again quickly?

I confess, this just freaks me out. My son was on Keppra for siezures and even

though he was only 4 years old, he said he was " sad " . I called the doctor and

got him off of that so quickly.

So I am just afraid of the suicidal thoughts Bill described and the violence

that another has recently described. This is a real hurdle for me in starting

this protocol. All comments and experiences will be most welcome and

appreciated.

Thank you! Sheryl

[Guest guest]

For bad 'reflux', try tiny sips (1/4 tsp) of dye-free liquid benedryl during

the

pain and see if that resolves it better than reflux meds....   If it does, it

could mean more of an allergic esophagitis issue that easily gets overlooked.

________________________________

From: Gage Vanlandingham <gager292@...>

Sent: Thu, December 9, 2010 9:06:27 AM

Subject: Re: ssri's/hope

 

My girl is 11 yrs old and we have been doing the biomed approach for 2 years

with some improvement. She suffers from high anxiety and reflux in addition to

all her learning and language issues, plus stimms all the time. The stimming did

not start until she was 6yrs almost 7 which is abnormal. I know something

changed and caused her to develoop this behavior. I hope that her biomedical MD

will be willing to try the protocol. She seems to be open minded and

willing to listen to what I have to say. She also has an autistic son. Those

affected seem to listen to " us moms " more. I really think Sydni will benefit

from the protocol. Her first labs almost 2 yrs ago showed a very low count

of NK cells and we tried to do another panel earlier this year but the blood

hemolized. I am going to get her to draw them again. I do not think this MD paid

enough attention to that value. Thanks for your encouragement and I hope Sydni

will see great results in

the end.

Thanks !

 

Petra

Hi Sheryl,

I personally always had bad reactions to SSRIs, but I recommitted over and over

to trying them again, until I landed w/an SNRI that did well until I developed a

stomach problem (maybe not related - I developed an allergy to half of

everything I was taking and eating at that time).

The first time, the SSRI was a bit rough, but leveled out quickly. Once one was

pretty bad and got stopped immediately.

Sometimes it seems like the med is giving a horrible reaction, you're terrified,

the child is freaking out, and the crazy doctor tells you to up the dose. For

some reason, you actually do it like he suggests (because you know he's got to

be kidding), and they come out on the other side doing soooo much better that

you decide it was worth every moment of fear and stress.

We had a few rough tries, I had a few times of stress where I couldn't figure

out what was good, bad, med, food, up, down, sideways... but SSRIs are almost

always a benefit - very few can't get settled on them. They're neuroprotective,

immune modulating, and show that they increase blood flow to the parts of the

brain lacking. They improve eye contact, connectedness... the reason I keep on

trying them is because I've studied what they can do and I've seen it in my

kids.

It was by far the most frightening part of the protocol. We were off them a

couple of years, and my youngest went on Effexor when ssri wasn't doing enough.

He had been so whiney and soooo OCD for so long that when we started this one

(an SNRI, and did it because I had done so well on it for a year). I've

forgotten what that child was like, what level of obsession and despair when he

couldn't get what he was obsessing about. They only time I see it and remember

it now is when he gets sick and can't take his med for a couple of days - then

I'm like " Oh yeah! That's why he's on this. "

No, not everyone has a bad time. They don't post " Help! " to the list much

either. We don't hear as much from the ones that get it nice the first

time. Most of them were fine for both my boys.. we'd just switch around and

mess with doses to see if another would do even better.

Hope that helps...

________________________________

From: Sheryl <ssaturnino@...>

Sent: Tue, December 7, 2010 12:28:03 AM

Subject: ssri's

Dear Listmates,

I need to hear from you regarding ssri's. Does every one have a hard time after

starting them? Have your kids worked through a tough time on one or did you

switch and things got better?

If they do have an awful reaction, once you quit it, does the child become his

self again quickly?

I confess, this just freaks me out. My son was on Keppra for siezures and even

though he was only 4 years old, he said he was " sad " . I called the doctor and

got him off of that so quickly.

So I am just afraid of the suicidal thoughts Bill described and the violence

that another has recently described. This is a real hurdle for me in starting

this protocol. All comments and experiences will be most welcome and

appreciated.

Thank you! Sheryl