Re: Fw: [pandas_autism] Re: Recovery time from PANDAS

[Guest guest]

Thanks for writing Bill.  Those are great suggestions.  Your son is very lucky

to have you.

 

Lynn

From: Bill klimas <klimas_bill@...>

Subject: Fw: [pandas_autism] Re: Recovery time from PANDAS

neuroimmune-xmrv-alliance

Cc:

Date: Wednesday, November 17, 2010, 9:20 PM

 

----- Forwarded Message ----

From: Bill klimas <klimas_bill@...>

pandas_autism

Sent: Wed, November 17, 2010 8:42:21 PM

Subject: Re: [pandas_autism] Re: Recovery time from PANDAS

List Mates,

Hey I have been here about a week and have read every post. I have done similar

spells on the Valtrex, MB12, LYME, SCIA list and others. Outside of what each

and every individual has been through there is one common thread. A chronic and

recurring pathogen driven inflammation. Strep, HHV6, Fungal infections (Connor

has had many) various bacterial infections but what keeps happening in the

infections inability to totally go away. Lack of antibodies? lack of appropriate

immune response? re-exposure to allergens? both environmental and foods, there

is no end. Solve one problem - get rid of the cat - toss the carpet - go GF/CF -

No more candy, bread, fruit juice, preservatives (Biggie for us) - it just comes

back two fold in another issue. I was asked what I believe did the best for

connor and truthfully all of the above and one much more important aspect.---- I

MADE MY HOUSE MORE FUN FOR TEN_YEAR_OLDS than any house in the county. I have

forced Connor to tolerate at first and then embrace ten or more mainstream kids

daily, period. We did saltwater aquariums and snorkeling, last month a haunted

house on Halloween (Thirty kids on Saturday, 150 kids on Sunday,bake sale, lemon

aid stands, standard movie days, Monopoly games tournaments, Scrabble, TONS of

Popcorn and Tacos. All regular kids! I help many of them with homework - JUST

GET THEM IN YOUR HOUSE OFTEN! Tough love for sure but it is the one thing that

has helped him get healthier. One they become a support group that understands

the diet issues (Kids understand it is the adults that judge) and one on one,

help him become in control himself (Ill, healthy or just having a bad day). Two

they are a great weapon on behaviors, You can not go to Jeffery's house untill

you get under control, " Hey if you act that way at school no one will want to

sit with you at lunch " . Last week his best friend decided they could not be

friends anymore. It killed him. I asked him what we could do different, he knew

the answers. One year on this program and it has changed his life - well or

not- gave him speech (had too), stopped meltdowns (friends do not deal with

tantrums), made him WANT to be a regular kid. ESE SUCKS DO NOT GO THERE!

The bottom line is we need to support the growing up as well as the health even

if they are unhealthy.

Back to why I wrote this essay is there some underlying illness above and beyond

Pandas, HHV6, Lyme, and the rest that allows our kids to come and go from all

these illnesses endlessly? Anyone that wants to follow the XMRV debate that may

well be Causative followneuroimmune-xmrv-alliance@groups .com, This new

retrovirus has been Id'ed in CFS and may well be a major be causative agent.

Any questions email me off list (this is a Pandas list after all) at

Bill.Klimas@..., if they are pertanent I will cc the list.

Bill

________________________________

From: Gayle Owens <gowens_lmt@...>

pandas_autism

Sent: Wed, November 17, 2010 12:02:33 PM

Subject: Re: [pandas_autism] Re: Recovery time from PANDAS

Perhaps this would be of interest, perhaps not. My son (16) is not on the

spectrum. This is his 3rd exacerbation that is completely clear with definable

edges. They started at age 8, 11, 15. Age 8 had zero intervention beyond trials

of ssri's and psychs telling us it was just the beginning and it would be a

long, difficult road with him. Age 11 had me finding PANDAS online which lead to

the MB12 group because even with strep titers, his always start with a virus.

Enter the DAN! protocol. Age 15 we still had some elements of the DAN! in place

but have tried everything else under the sun including TCM, homeopathy & high

dose abx as well as ramping up DAN!.

Here's what I've seen in my kid...it takes about a year to start to see things

abate. Start to finish at 8 and 11 it took 18 months...with or without

intervention! We're at the 1 yr mark again, significant improvement now but it's

by no means over. Maturity and ability to rationalize and reason help but we're

still in the trenches. While I wouldn't stop what we're currently doing because

it does help, it just seems in our house there is a course that it has to be

run.

________________________________

From: Pamela P <pamelaleigh99@...>

pandas_autism

Sent: Wed, November 17, 2010 8:03:38 AM

Subject: RE: [pandas_autism] Re: Recovery time from PANDAS

No, it took that long to get relief. I feel that my son had raging PANDAS for

years, but it was overlooked in the midst of all his Autism symptoms. Like so

many things unusual or odd behavior are brushed off in ASD kids by saying it is

their Autism. Just like his Seizures were missed for years. By the time his

PANDAS was actually diagnosed he was in a bad way.

Pamela

From:pandas_autism [mailto:pandas_autism ] On

Behalf Of Christel King

Sent: Tuesday, November 16, 2010 11:41 PM

pandas_autism

Subject: Re: [pandas_autism] Re: Recovery time from PANDAS

if it took 2.5 months it sounds like it simpley ran it's course and the child

was resistant to what was used

[pandas_autism] Recovery time from PANDAS

>>

>>

>>

>>

>>

>> My son is 13 yrs old and has been a PANDAS kid for several years. In Sept

>> his

>> PANDAS symtoms became severe. SIB's, separation anxiety, rages & OCD. He

>> has

>> been on high dose Augmentin, Vanco, Nystatin, diflucan & prednisone for

>> close to

>> two weeks. We have seen some improvement in his symtoms but they do still

>> exist.

>> When can one expect to see total imrovement? When do you decide to move on

>> to

>> IVIG?

>>

>> Thanks

>>

>>