RE: Re: [pandas_autism] puberty question

[Guest guest]

So where do we start? We have done so many blood tests and to the drs here in NS

the ‘slight’ inconsistencies are easily written off. Our son has been on

valtrex for two weeks do we now try to test for HHV6 as his titers for HHV1-8

showed nothing. I have taken Dr. G’s book to our dr and he wasn’t interested

in even looking at it. There need to be more published studies that make it to

the mainstream journals. More trials, more research, more long-term studies on

treating these kids. We have to do better, sooner!

From: [mailto: ] On Behalf Of Bill

klimas

Sent: February-23-11 8:57 PM

pandas_autism

Cc: ; neuroimmune-xmrv-alliance

Subject: Re: [pandas_autism] puberty question

Yes she has.

Allow me to clarify my earlier comments. We are dealing with PANDAS but in

addition to this we are dealing with classical Autism. My son Connor is in gen

ed, sixth grade and struggling with social skills and class room skills but is

making the grades. He was not EVER high functioning before we grasped the immune

connection but with appropriate medical treatments and endless support he is

acquiring the skill sets necessary to " Make it " in life and school. We hit the

PANDAS problems probably about a year ago. those of you in the CSF/Lyme/ Autism

community recognize my last name. Connor's aunt is Dr Klimas, a well known

researcher out of U of Miami focused on CSF, Gulf War syndrome and the immune

dysfunction related to these diseases and Autism (She does not work in the

Autism realm). Several years ago she connected the dots between Immune

dysfunction and CSF and then told me they marry the profiles in Autism. We have

addressed Connor's issues as an immune issue (our officail diagnosis in immune

dysfunction and qualify for all insurance benefits) and his PANDAS is just

another secondary opportunistic infection related to a broken immune system. We

are treating this as well as HHV6, fungal infections, food and environmental

allergies that further weaken the his immune system.

I see this as not a singular issue but a wide spectrum of issues that are

secondary to a root cause. We are treating disease processes that weaken him

and contribute to a neuro-inflammation that is at the heart of his behavioral

issues. The healthier he is the better he does and the more he develops. Connor

is very lucky to have a world renown researcher in specifically his medical

issues a his fingertips and with it an unlimited access to immune testing and

treatment.

My earlier comments are related to how we approach qualifying how well he is

doing. We base our judgments on his improvements on immune panels and various

blood work. If his system is testing out as near normal his behaviors are nearly

indiscernible to main-stream kids. If these standard markers are out of range

his behaviors are off the wall and foods, allergies or biomedical issues are at

the heart of the problem. We treat all identifiable issues. What is difficult to

grasp is that all of these overlap. Solve Strep with a antibiotic and yeast in

the gut explodes further damaging the immune system and making him sicker than

the pre-strep period. ETC .....

What I commented on was allergies - food and environmental- If you have five

issues working against you and puberty hits, it is impossible to ID anyone

cause.

Anyone that is interested can following this line of thought log on the

group at <mailto:%40> >

Great folks and very helpful

On another note anyone that has not looked at the immune connection there is

VERY promising research being done in a probable Root Cause. A recently

discovered retrovirus called XMRV. The jury is out but if this is the basis of

the immune issues like HIV(another etrovirus very similar to XMRV) it could well

be a massive breakthrough for our kids. Follow this at:

neuroimmune-xmrv-alliance

<mailto:neuroimmune-xmrv-alliance%40> .

Great stuff happening to my boy now 12. Huge answers coming shortly.

________________________________

From: and Freeman <freemanbk@...

<mailto:freemanbk%40ns.sympatico.ca> >

pandas_autism <mailto:pandas_autism%40>

Sent: Wed, February 23, 2011 7:01:34 PM

Subject: RE: [pandas_autism] puberty question

You have definitely earned your mommy wings...

From:pandas_autism <mailto:pandas_autism%40>

[mailto:pandas_autism <mailto:pandas_autism%40> ]

On

Behalf Of Gayle Owens

Sent: February-23-11 6:22 PM

pandas_autism <mailto:pandas_autism%40>

Subject: Re: [pandas_autism] puberty question

I really hate to post anything negative but in the interest of preparedness and

full disclosure, I can tell you PANDAS during puberty has been a whole new kind

of hell here. He's had 3 major episodes (age 8, 11 and 16). 8 was nothing

compared to 11 and we all had a better quality of life even at 11 than we did at

16. It may be worth considering that my son didn't start with the classic PANDAS

symptoms until age 8.5. I know several kids who had a pre-adolescent start (ages

8-10) and all of those that I can think of off the top of my head had horrific

teen experiences (as if the teens aren't hard enough). Also, while his ugliest

symptoms have been FAR more acute at 11 and 16, he's better (particularly now at

17) at wrestling the feelings down and not becoming utterly debilitated at the

slightest provocation. Our most extreme periods always last 3-4 mos, the next

year after that is the classic sawtooth recovery (2 steps forward, 1 step back).

We're 15 months into this episode and I'd say he's 80% back to baseline. Still

not in school but that's about all that's missing right now (we're homeschooling

for which I expect some sort of merit badge in heaven). All of his symptoms

abate at about the same pace except a return to normal weight...every time that

is the last thing to come back to baseline. And just for the record, in the

darkest moments last winter, I really did not believe he and/or I would

survive...literally live through it this time...but we did. I wouldn't wish it

on anyone but there is SO much information and help out there now compared to 8

years ago. By the time your little one is in middle school there will be even

more out there, more help, more docs who get it.

________________________________

From:Wilma Jenks <wilma1866@... <mailto:wilma1866%40sbcglobal.net> >

pandas_autism <mailto:pandas_autism%40>

Sent: Wed, February 23, 2011 5:48:29 PM

Subject: Re: [pandas_autism] puberty question

my child is getting worse with puberty.

On Feb 23, 2011, at 12:22 PM, Tori Tuncan wrote:

Has anybody noticed a decrease in PANDAS symptoms as the child gets

older, nearing puberty? My daughter is almost 9 and seems to be

getting up near puberty stage, and her PANDAS issues aren't nearly as

severe. I'm wondering if puberty approaching might have anything to do

with it?

Thanks

Tori Tuncan