Re: Low Dose Naltrexone (LDN)

[Guest guest]

Hi Rhonda -

I also have PANDAS (plus a son w/Aspergers and a son w/CFIDS).   Both my boys

used to have PANDAS symptoms when they were coming down w/strep, although they

do not have PANDAS, and the symptoms would resolve w/treatment.

My sons had repeated strep infections early on, and they were treated with the

protocol (my oldest Aspie son was initially rated in the middle of moderate

to severe autism on the CARS a couple of years after he had made major

improvements).  My youngest son started treatment at 18 months (actually diet

intervention as early as 9 months) and I think this saved him from autism, but

when he stopped the protocol almost 3 years later, he has had 2 major chronic

fatigue episodes since and has also developed asperger-like symptoms, although

it's really CFIDS in my opinion.

I've walked the line being close to aspie on and off all much of my life -

always during my worst periods of illness, following encephalitis, etc.  I had

PANDAS at age 9 (probably started age 8 but 9 -10 was the most dramatic).  I

think it was more Tourette's like in my teens although they're so similar it's

hard to say.  I think I had my next big PANDAS attack in my late teens thru

early 20s, and again in 2003.  It has only been in the last year that I think my

PANDAS is diminishing again.

I've started the protocol in addition to the doxycycline/antifungal that

has helped me so much (but doxy is not appropriate for your child's age).  I

experience major problems functioning cognitively when the PANDAS is " up " but I

can pull out of it pretty quickly on the doxycycline and get back to functioning

closer to subnormal pretty quickly.  I was also a gifted child w/high IQ but

couldn't function well enough to do well acedemically.  All aptitutude tests I

was top 1-2% in the nation, but grades were awful in my later years (maybe from

a death in the family, maybe from the cognitive dysfunction after mono and the

first of the cfids episodes).

There's all my history, here's my thoughts:

The immune system is so hot and reactive in pandas.  The flickering brain can be

triggered by so many things.  One of those things is certain types of probiotics

- never give multiple strains, stick to mild kyodophilus, or maybe none at all -

I can take any of them without exacerbating my symptoms right now (although they

sure would help my gut).  Whole foods are devastating to me.  I cannot take

supplements, I cannot even take a multivitamin.  They set me off soooo bad I can

tell the very day I take them, although it usually takes a few times before I

catch on that they're a trigger.  Food is a big problem - any whole grain or nut

makes me flicker.  I cannot stop my doxycycline w/out major consequences (but I

also can't stay on it without a high enough dose of antifungals - which is

really hard to come by).  With kids, it's erythromycin or eryped to get the ASO

down (although it can exacerbate symptoms initially until it has the chance to

bring

down the titers).

Only by reducing my triggers (very low allergy diet like the protocol) and

treating strep can I make improvements, but I never had the opportunity for the

antivirals before, so I don't know how that'll go.  I do think increasing

natural killer cells (happened for my youngest on the antivirals) will help my

PANDAS.  Sure hope so!

HTH-

 

________________________________

From: Rhonda Spellman <Rhonda@...>

; maskas99 ; GFCFKids

Sent: Thursday, October 30, 2008 2:59:25 PM

Subject: Low Dose Naltrexone (LDN)

Has anyone used Low Dose Naltrexone (LDN) to help their child with

Austism? If so, can you please share your results?

I am considering this for my son. He has Asperger's Syndrome, is 9 and

seems to be increasingly more of a challenge. Our biggest challenge:

getting him to do his homework! We have tried everything, it seems, to

keep him motivated, focused, interested.. . you name it.

I should mention that he has a I.Q. of 170 ( " getting it " isn't the

problem). He should be in the GT classes but won't stay focused long

enough to complete the timed tests to qualify.

He is currently taking MindLinx, TriEnza, biotin, a very good whole food

multi and a whole food mineral supplement. We use GSE and / or OLE when

he seems more " out there " but I'm not seeing much of an improvement.

He hasn't been the same since he first had PANDAS (at the beginning of

last school year) - any ideas, tips or thoughts on this?

HELP!!!!!!!! !!!

Thank you ALL so much,

Rhonda

[Guest guest]

Hi ,

I also have a very bright boy with extremely difficult attention

issues (not to mention the full complement of immune-mediated health

stuff). We saw really remarkable improvements in his focus,

attention, and social skills with neurofeedback therapy.

Just something else to consider.

HTH~

Donna

>

> Has anyone used Low Dose Naltrexone (LDN) to help their child with

> Austism? If so, can you please share your results?

>

> I am considering this for my son. He has Asperger's Syndrome, is 9 and

> seems to be increasingly more of a challenge. Our biggest challenge:

> getting him to do his homework! We have tried everything, it seems, to

> keep him motivated, focused, interested... you name it.

>

> I should mention that he has a I.Q. of 170 ( " getting it " isn't the

> problem). He should be in the GT classes but won't stay focused long

> enough to complete the timed tests to qualify.

>

> He is currently taking MindLinx, TriEnza, biotin, a very good whole

food

> multi and a whole food mineral supplement. We use GSE and / or OLE

when

> he seems more " out there " but I'm not seeing much of an improvement.

>

> He hasn't been the same since he first had PANDAS (at the beginning of

> last school year) - any ideas, tips or thoughts on this?

>

> HELP!!!!!!!!!!!

>

> Thank you ALL so much,

> Rhonda

>

[Guest guest]

Same here, but we've been doing BrainHighways (www.brainhighways.com). It's

in the San Diego area, but I've come across similar programs in other areas

(Phoenix, for one, called something else).

Are you working with Dr. G? He would not allow many of the supplements

you've mentioned. His protocol has immensely helped my son's ability to do a

program like Brain Highways.

Kristy

From: [mailto: ] On Behalf Of

thefamily007

Sent: Sunday, November 02, 2008 11:55 AM

Subject: Re: Low Dose Naltrexone (LDN)

Hi ,

I also have a very bright boy with extremely difficult attention

issues (not to mention the full complement of immune-mediated health

stuff). We saw really remarkable improvements in his focus,

attention, and social skills with neurofeedback therapy.

Just something else to consider.

HTH~

Donna

>

> Has anyone used Low Dose Naltrexone (LDN) to help their child with

> Austism? If so, can you please share your results?

>

> I am considering this for my son. He has Asperger's Syndrome, is 9 and

> seems to be increasingly more of a challenge. Our biggest challenge:

> getting him to do his homework! We have tried everything, it seems, to

> keep him motivated, focused, interested... you name it.

>

> I should mention that he has a I.Q. of 170 ( " getting it " isn't the

> problem). He should be in the GT classes but won't stay focused long

> enough to complete the timed tests to qualify.

>

> He is currently taking MindLinx, TriEnza, biotin, a very good whole

food

> multi and a whole food mineral supplement. We use GSE and / or OLE

when

> he seems more " out there " but I'm not seeing much of an improvement.

>

> He hasn't been the same since he first had PANDAS (at the beginning of

> last school year) - any ideas, tips or thoughts on this?

>

> HELP!!!!!!!!!!!

>

> Thank you ALL so much,

> Rhonda

>