Re: About to throw in the towel

August 25, 2002

Have you ever checked her for yeast and gut bugs - late night parties

from our son always mean yeast/bugs.

Do an OAT at Metametrix called Organix and the Great Smokies CDSA.

You will learn a lot !

paul

-- In @y..., " Stillman " <courtneycns@a...> wrote:

> I need some encouragement that the protocol is worthwhile. We

have

> been giving my daughter valtrex, antifungal and various SSRIs for a

little

> over a year now. In that year, she has torn strips of wallpaper

off the

> wall, colored on the wall, peed all over her room so that it

stinks, lined

> items up. Every time we increase or change a SSRI, she stays up at

night.

> We just increased Zoloft and we are entering our second week of her

staying

> up, running around, jumping on her bed, kicking the wall. the

earliest she

> has crashed in two weeks is 11:30 pm. I have just about had it.

She never

> did any of these things before the medications. When she finally

goes to

> bed, my 4 month baby is up!

> Good things in this year: a little more alert, we are doing well

in our ABA

> programs and she is starting to say some words, sounds. The ABA

and speeech

> may be attributable to the fantastic A BA consultant we have and

the over 2

> hours of oral motor speech therapy per week. any encouragement out

there?

> At about midnight every night, I am about ready to throw in the

towel...

>

> courtney

> Allergy shots

>

> > Does anyone know how Dr. G feels about allergy shots? Do they

help

> support

> > the immune system or " feed the problem " like some of the drugs and

> > supplements do?

> >

> > (I will ask this on the 'Ask Dr. Goldberg' forum, it just looks

like he

> > hasn't had time to answer questions in awhile so I thought I'd

run it by

> > everyone in the meantime...)

> >

> > Thanks,

> > Timary

> >

> > Responsibility for the content of this message lies strictly with

> > the original author, and is not necessarily endorsed by or the

> > opinion of the Research Institute.

> >

August 26, 2002

In a message dated 8/25/02 10:04:43 PM Central Daylight Time,

courtneycns@... writes:

> she's been on Diflucan for a year.

>

This surprises me since Diflucan is so harh. I assume Dr. G has constantly

checked liver function while she's been on this drug since it can be tough on

the liver? The few weeks I took Diflucan, I felt very jittery and out of it,

absolutely couldn't make eye contact for any length of time, had to rock back

and forth. That could have just been my reaction since this was in my

extremely ill days when I had a Candida problem among other illnesses. Have

you ruled out possible negative reactions to the drugs, their fillers, etc?

Sometimes the best of treatments make things worse due to a bad reaction to a

filler in a drug or supplement. I don't recall what's in diflucan but I

vaguely recall the pill being pink so if she's taking that one perhaps she's

reacting to the dye?

Gaylen

August 26, 2002

We had the candidas test when we started the protocol and she's been on

Diflucan for a year.

Allergy shots

> >

> > > Does anyone know how Dr. G feels about allergy shots? Do they

> help

> > support

> > > the immune system or " feed the problem " like some of the drugs and

> > > supplements do?

> > >

> > > (I will ask this on the 'Ask Dr. Goldberg' forum, it just looks

> like he

> > > hasn't had time to answer questions in awhile so I thought I'd

> run it by

> > > everyone in the meantime...)

> > >

> > > Thanks,

> > > Timary

> > >

> > > Responsibility for the content of this message lies strictly with

> > > the original author, and is not necessarily endorsed by or the

> > > opinion of the Research Institute.

> > >

August 26, 2002

yes, we have frequent liver function tests. WE did have sleepless nights

when we started diflucan ( but wow was the nizoral worse), but would the

pink dye cause this problem now, after all this time? I keep thinking she is

going to fall over soon. Last night she went to sleep at 1:45. She's still

up now...and school starts Tuesday.

Re: Re: About to throw in the towel

> In a message dated 8/25/02 10:04:43 PM Central Daylight Time,

> courtneycns@... writes:

>

> > she's been on Diflucan for a year.

> >

> This surprises me since Diflucan is so harh. I assume Dr. G has

constantly

> checked liver function while she's been on this drug since it can be tough

on

> the liver? The few weeks I took Diflucan, I felt very jittery and out of

it,

> absolutely couldn't make eye contact for any length of time, had to rock

back

> and forth. That could have just been my reaction since this was in my

> extremely ill days when I had a Candida problem among other illnesses.

Have

> you ruled out possible negative reactions to the drugs, their fillers,

etc?

> Sometimes the best of treatments make things worse due to a bad reaction

to a

> filler in a drug or supplement. I don't recall what's in diflucan but I

> vaguely recall the pill being pink so if she's taking that one perhaps

she's

> reacting to the dye?

> Gaylen

>

August 26, 2002

Diflucan only goes after certain strains, we found we had to rotate a

few different things like sporanox, metrodizanole, Yeast Control etc.

Our Diflucan is made by Pfizer and comes as white powder in a bottle

that you add water to make a solution, maybe you should try that one

to avoid the pink dye,

paul

> yes, we have frequent liver function tests. WE did have sleepless

nights

> when we started diflucan ( but wow was the nizoral worse), but

would the

> pink dye cause this problem now, after all this time? I keep

thinking she is

> going to fall over soon. Last night she went to sleep at 1:45.

She's still

> up now...and school starts Tuesday.

>

> Re: Re: About to throw in the towel

>

> > In a message dated 8/25/02 10:04:43 PM Central Daylight Time,

> > courtneycns@a... writes:

> >

> > > she's been on Diflucan for a year.

> > >

> > This surprises me since Diflucan is so harh. I assume Dr. G has

> constantly

> > checked liver function while she's been on this drug since it can

be tough

> on

> > the liver? The few weeks I took Diflucan, I felt very jittery

and out of

> it,

> > absolutely couldn't make eye contact for any length of time, had

to rock

> back

> > and forth. That could have just been my reaction since this was

in my

> > extremely ill days when I had a Candida problem among other

illnesses.

> Have

> > you ruled out possible negative reactions to the drugs, their

fillers,

> etc?

> > Sometimes the best of treatments make things worse due to a bad

reaction

> to a

> > filler in a drug or supplement. I don't recall what's in

diflucan but I

> > vaguely recall the pill being pink so if she's taking that one

perhaps

> she's

> > reacting to the dye?

> > Gaylen

> >

August 26, 2002

ok. thanks

Re: Re: About to throw in the towel

> >

> > > In a message dated 8/25/02 10:04:43 PM Central Daylight Time,

> > > courtneycns@a... writes:

> > >

> > > > she's been on Diflucan for a year.

> > > >

> > > This surprises me since Diflucan is so harh. I assume Dr. G has

> > constantly

> > > checked liver function while she's been on this drug since it can

> be tough

> > on

> > > the liver? The few weeks I took Diflucan, I felt very jittery

> and out of

> > it,

> > > absolutely couldn't make eye contact for any length of time, had

> to rock

> > back

> > > and forth. That could have just been my reaction since this was

> in my

> > > extremely ill days when I had a Candida problem among other

> illnesses.

> > Have

> > > you ruled out possible negative reactions to the drugs, their

> fillers,

> > etc?

> > > Sometimes the best of treatments make things worse due to a bad

> reaction

> > to a

> > > filler in a drug or supplement. I don't recall what's in

> diflucan but I

> > > vaguely recall the pill being pink so if she's taking that one

> perhaps

> > she's

> > > reacting to the dye?

> > > Gaylen

> > >

August 26, 2002

In a message dated 8/25/02 11:30:58 PM Central Daylight Time,

courtneycns@... writes:

> WE did have sleepless nights when we started diflucan ( but wow was the

> nizoral worse), but would the pink dye cause this problem now, after all

> this time?

If she didn't have a problem right away, it would be less likely but

sometimes kids can develop intolerance to certain foods or substances over

time. It would make sense to try the uncolored powder if it's available to

rule it out.

Gaylen

August 26, 2002

> yes, we have frequent liver function tests. WE did have sleepless

>nights when we started diflucan ( but wow was the nizoral worse),

but >would the pink dye cause this problem now, after all this time?

I >keep thinking she is going to fall over soon. Last night she went

to >sleep at 1:45. She's still up now...and school starts Tuesday.

I missed the original post so please forgive me if I am offbase.

On a " medical " approach, look towards red dyes, etc. Perhaps

a feingold type diet approach. *personally*, I can drink

a double espresso and go right to bed. I do know others

who can not tolerate caffeine. I would limit any caffeine

after 3PM. I would also limit sugars and carbohydrates for dinner.

It was sorta funny but I tend to forget that carbohydrates

are a sugar. You may get that initial sleepy feeling after

eating a starch loaded dinner but... some people experience

a second wind a few hours after dinner.

On a behavioral approach.... I would not enfore a strict

bed time the first few nights. I would instead enforce a strict

waking time with no naps. I would also have rules to what to

do if you can't sleep. We didn't allow our never sleeping child

to turn on lights or play. He had to stay in his bed- period.

We also did something which may sound " hokey " to some but we

practiced meditation. There is an excellent book called, " Ready Set

Relax! " which has meditation scripts for children. In addition

to this, we did our own " how to go to bed " program in which

we taught our son (who was High funct. or whatever you want to call

him) to create in his mind a lock box and to put all his thoughts

into it. We then taught him to shut the box and do deep breathing

exercises and to visualise his body. He then learned to tense

and untense muscles and to visualise various themes.

Additionally, some children can not handle exercise in the evening.

I am actually someone who can't. I am very " alert " after excercise.

You may find that if she is doing tons of running and jumping around,

she is more alert and awake. Try exercise in the morning instead.

Take her on a bike ride, forced march, or even small run in the

morning!

Lastly, some SSRI's were very very bad for our child. One was paxil

and one was celexa. Both caused my son to not sleep.

You also may find that once school starts, she sleeps better because

there is a routine of sorts in place. Some children need strict

routine because things like sleep become out of whack if they do not

have it.

A.C.

August 26, 2002

Hi ,

We have experienced similar problems with my younger son. The right SSRI

helps him when the dose is kept low enough. Whenever we try to go beyond a

pretty minimal dose we have seen changes in his behavior (mood swings,

meltdowns, defiance, aggression, inhibition, sensory, sleep patterns, etc.)

There seems to be this dose line that we just can't cross.

The strange thing is that many of the symptoms that manifest are ones he has

with the PANDAS-type symptoms. This has always seemed so bizarre to me

since the SSRI's are what they use to treat OCD, anxiety, etc. We change

the SSRI's around to see if his tolerance has changed and we can get the

dose a little higher. At 13 he's alot bigger than me and still has never

been able to tolerate a full tablet of the lowest dose of SSRI's. The

beneficial doses are usually around 1/2 (1/3-2/3) the lowest dose.

The SSRI's do have effects on cytokines. I think it'll be interesting if we

ever get to measure cytokines directly. Then it might be easier to

understand what the differences are. Why someone like my older son

(CFS/psoriasis) did well on higher doses that my younger son (Aspergers/OCD)

deteriorates on.

If you know that somethings out of kilter and not behavioral, calmly get

that point across. As parents we are the ones who know our children best

and have to be their advocate (their voice). When my son was telling me how

much he loved and appreciated all that I have done for him, he said that I

was the one person he knew he could count on, who always backed him and

believed in him.

Cheryl

>From: " Stillman " <courtneycns@...>

>Reply-

>< >

>Subject: About to throw in the towel

>Date: Sun, 25 Aug 2002 07:41:32 -0500

>

>I need some encouragement that the protocol is worthwhile. We have

>been giving my daughter valtrex, antifungal and various SSRIs for a little

>over a year now. In that year, she has torn strips of wallpaper off the

>wall, colored on the wall, peed all over her room so that it stinks, lined

>items up. Every time we increase or change a SSRI, she stays up at night.

>We just increased Zoloft and we are entering our second week of her staying

>up, running around, jumping on her bed, kicking the wall. the earliest she

>has crashed in two weeks is 11:30 pm. I have just about had it. She never

>did any of these things before the medications. When she finally goes to

>bed, my 4 month baby is up!

> Good things in this year: a little more alert, we are doing well in our

>ABA

>programs and she is starting to say some words, sounds. The ABA and

>speeech

>may be attributable to the fantastic A BA consultant we have and the over

>2

>hours of oral motor speech therapy per week. any encouragement out there?

>At about midnight every night, I am about ready to throw in the towel...

>

>courtney

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August 26, 2002

> with the PANDAS-type symptoms.

What is this?

August 26, 2002

PANDAS (Pediatric autoimmune neuropsychiatric disorders associated with

streptococcal infections) is a type of that is triggered by strep

infection. My son developed symptoms at age seven that exactly match except

that he has never tested positive for strep. This was in addition to the

symptoms he already had that were diagnosed as Aspergers. His original

Neurospect showed the basal ganglia hyperperfusion that is found in PANDAS.

For whatever reason...the OCD wasn't mentioned in the report, although I saw

it written in his folder the second time we went in. The other bloodflow

abnormalities " raised the question of autism or a varient thereof. " (they

pretty much nailed it without a diagnosis)

The PANDAS kids develop very unique symptoms. Some of the newer literature

does acknowledge that other bacterial/viral infections could potentially do

the same thing. They also include symptoms like deterioration in

handwriting and math, increase in tactile/sensory issues...which my son

dealt with long before the literature ever mentioned them. I am 100%

positive his is triggered by some type of bacteria.

Cheryl

Am J Psychiatry 1998 Feb;155(2):264-71 Related Articles, Books, LinkOut

Pediatric autoimmune neuropsychiatric disorders associated with

streptococcal infections: clinical description of the first 50 cases.

Swedo SE, Leonard HL, Garvey M, Mittleman B, AJ, Perlmutter S, Lougee

L, Dow S, Zamkoff J, Dubbert BK.

Section on Behavioral Pediatrics, NIMH, Rockville Pike, Bethesda, MD

20892-1381, USA. swedos@...

OBJECTIVE: The purpose of this study was to describe the clinical

characteristics of a novel group of patients with obsessive-compulsive

disorder (OCD) and tic disorders, designated as pediatric autoimmune

neuropsychiatric disorders associated with streptococcal (group A

beta-hemolytic streptococcal [GABHS]) infections (PANDAS). METHOD: The

authors conducted a systematic clinical evaluation of 50 children who met

all of the following five working diagnostic criteria: presence of OCD

and/or a tic disorder, prepubertal symptom onset, episodic course of symptom

severity, association with GABHS infections, and association with

neurological abnormalities. RESULTS: The children's symptom onset was acute

and dramatic, typically triggered by GABHS infections at a very early age

(mean = 6.3 years, SD = 2.7, for tics; mean = 7.4 years, SD = 2.7, for OCD).

The PANDAS clinical course was characterized by a relapsing-remitting

symptom pattern with significant psychiatric comorbidity accompanying the

exacerbations; emotional lability, separation anxiety, nighttime fears and

bedtime rituals, cognitive deficits, oppositional behaviors, and motoric

hyperactivity were particularly common. Symptom onset was triggered by GABHS

infection for 22 (44%) of the children and by pharyngitis (no throat culture

obtained) for 14 others (28%). Among the 50 children; there were 144

separate episodes of symptom exacerbation; 45 (31%) were associated with

documented GABHS infection, 60 (42%) with symptoms of pharyngitis or upper

respiratory infection (no throat culture obtained), and six (4%) with GABHS

exposure. CONCLUSIONS: The working diagnostic criteria appear to accurately

characterize a homogeneous patient group in which symptom exacerbations are

triggered by GABHS infections. The identification of such a subgroup will

allow for testing of models of pathogenesis, as well as the development of

novel treatment and prevention strategies.

PMID: 9464208 [PubMed - indexed for MEDLINE]

>From: " Crawshaw-Little " <familywithautism@...>

>Reply-

>< >

>Subject: Re: About to throw in the towel

>Date: Mon, 26 Aug 2002 10:02:43 -0700

>

> > with the PANDAS-type symptoms.

>

> What is this?

>

August 27, 2002

I am new to this list, am glad to see someone mention PANDAS. My 10yr old son

has PANDAS the high strep titers etc. He always had odd behaviors following

illnesses. We are at a point now where he has along with his Aspergers very bad

OCD. If anyone else is dealing with PANDAS or OCD and can offer any information

I would appreciate it.

Cheryl B wrote:PANDAS (Pediatric autoimmune neuropsychiatric disorders

associated with