Tics- or PANDAS - Is my son needing specialized doctors?

[Guest guest]

Hi all,

Hope everyone is well. We have been really struggling over here, so I

havent been online much... quick update.

le (7) - My previous " NT " daughter, just diagnosed bipolar and

PDD. Armor thyroid helping food cravings with hypoglycemia somewhat~ but

frustration and explosive behavior a major problem.

Diet-enzymes-suppliments show no noticable effects to date. I am having

here krytopyrroles tested to see if she has pyrroloria(sp).

Devon (5) - HFA - I cant believe this- but he now has tics. For a while

I thought it was a stim. I realise now- no way. He cant control them.

Whats wierd is they are primarily oral (although I think his eyeblinking

may be one as well)- and they evolve. For instance- the first one was a

quick/deep inhale while holding his mouth a certain way. Then it seemed

to switch to holding his mouth open for a very long time, and then

exhaling and saying " hey " . He would also grunt occasionally. Now he is

growling really loud- almost like clearing your throat. We asked him if

his throat hurt, and he did say no. Also- if you copy his tic, he will

get upset. If he is walking or running, he will suddenly stop, and have

a tic. Depending on the day, they rangle from every 5 seconds to once an

hour. They are getting bad! I even did the vitamin A protocol just to

see if the eyeblinking was related to that. I thought I saw some

improvement- but I guess thats a whole other post.

Some of you may remember me talking about his chronic tonsilitis- and

how they wanted to take is tonsils out- well that never happened and the

tonsilits hasn't gone away. This issue did arise a few months after back

to back strep infections. We have tried different things- nothing is

helping yet. I am getting close to trying homeopathy.

I think my doctor would be willing to order whatever tests, but I dont

know if he can interpret them. Anyone out there have this happen? Have

any ideas what tests are appropriate to determine PANDAS and what

treatment works- if any?

Thanks much,

[Guest guest]

> Diet-enzymes-suppliments show no noticable effects to date.

My son needed a different diet, with enzymes, than most autistic kids.

Have you tried experimenting and/or rotating her foods, to see if

there are some that she does not tolerate? Also, my son would regress

with most supplements. What are you using?

Most of my son's " behavioral " issues were related to viruses, not

foods or metals. He was not bipolar tho.

> Whats wierd is they are primarily oral (although I think his eyeblinking

> may be one as well)

These are tics my #1 gets when he has a yeast issue.

> Some of you may remember me talking about his chronic tonsilitis- and

> how they wanted to take is tonsils out- well that never happened and the

> tonsilits hasn't gone away. This issue did arise a few months after back

> to back strep infections.

Consider PANDAS if he had strep issues

http://intramural.nimh.nih.gov/research/pdn/web.htm

Dana

[Guest guest]

Diane,

That is strangely coincidental. Devon is HFA- but a year ago- he really

had no functional language. He could label items- and has had some

savant qualities all along in development. We have conservatively

chelated- 10 rounds in 10 months. But have had strange setbacks along

the way. How will you persue the viral issues?

Interesting point you make about Simpsonwood. Those kids probably had

less mercury, and were less damaged to an extent.

> [ ] Re: Tics- or PANDAS - Is my son

> needing specialized doctors?

>

>

>

>

> Deja vu - seems like many HFA children go on to develope tics, motor

> or vocal, or both, which by definition is considered Tourettes

> Syndrome.

> My child developed TS around the age of six, and we have had very

> little success remediating the symptoms. So far, we have only used

> clonidine, (catapres), which seems to help a little.

> We are also pursing viral and mercury vaccine issues, which pre -

> Simpsonwood, was noted to be related to tic disorders in even greater

> proportion than autism!

> However, there seems to be some good news in that, as his tics

> emerged, his autistic behaviors diminished significantly.

> Coincidence, or maybe, part of his brain/immune system/metabolism

> recovered enough to remediate autistic behaviors, but residual damage

> or dysfunction may still be present.

> Maybe others could share successes regarding management of tics...

>

> Best wishes..

> Diane

>

>

>

[Guest guest]

Hi ,

> --- Asmus <jenniferasmus@...> wrote:

> >

> > le (7) - My previous " NT " daughter, just

> > diagnosed bipolar and

> > PDD. Armor thyroid helping food cravings with

> > hypoglycemia somewhat~ but

> > frustration and explosive behavior a major problem.

> > Diet-enzymes-suppliments show no noticable effects to date. I

>

> How much No Fenol did you give?

We have tried small doses up to 2 caps per meal. She never had any

adjustment phases to the enzymes. We never really saw a big difference

using them. She still has dark circles. She is mostly DF- with

occasional cheese. We generally give her the chewable AFP when she has

it- Which by the way we love. Those chewables are fantastic.

>

>

> >

> > Some of you may remember me talking about his

> > chronic tonsilitis- and

> > how they wanted to take is tonsils out- well that

> > never happened and the

> > tonsilits hasn't gone away. This issue did arise a

> > few months after back

> > to back strep infections. We have tried different

> > things- nothing is

> > helping yet. I am getting close to trying

> > homeopathy.

>

> Have you tried Oil of Oregano and Olive Leaf Extract?

> If yes, how much?

We have used olive leaf regularly, and started using OOO recently. I am

giving 3 drops Olive and 1 drop OOO 3 times a day. I just started this-

so no news yet.

>

> Does he have allergies, my son't frequent infections

> were caused by allergies. Finding the source stopped

> the infections.

Oh yes, he does. And we have done elimination. We did skin prick

testing, blood testing, elimination- etc. Who knows- maybe he has

developed another food allergy. He did with nectarines. He also has

animal/environmental allergies as well. The one thing we didn't do was

get rid of our dogs. They don't shed, and are very small. I know there

is still some dander tho. My daughter would be so upset if we got rid of

them.

[Guest guest]

Dana,

>

> My son needed a different diet, with enzymes, than most

> autistic kids. Have you tried experimenting and/or rotating

> her foods, to see if there are some that she does not

> tolerate? Also, my son would regress with most supplements.

> What are you using?

>

> Most of my son's " behavioral " issues were related to viruses,

> not foods or metals. He was not bipolar tho.

The biggest change we saw was dairy removal. It improved her black

circles-but they are still there a little. Most all of the diet

changes/rotation occurred before she started having major problems. We

tried GF/CF with no real changes. Her main symptoms are

sensory/emotionality, rigidness, difficulty saying/decribing what she is

thinking, constant hunger, and very minor obsessions-more like your

average person.

I should rotate. Everytime I mess with her food- she flips. We are going

to try removing all starches, and then add them back in. Maybe its corn

or something. Which foods will enzymes not really help with?

At this point, all we are giving is calcium. We tried Brainchild- but I

noticed hyperactivitiy with it. I need to back to basics, and convince

myself of what she needs right now.

> > Whats wierd is they are primarily oral (although I think his

> > eyeblinking may be one as well)

>

>

> These are tics my #1 gets when he has a yeast issue.

>

Oh, interesting.

I am going to treat yeast for a week or so to see if it helps.

[Guest guest]

> Devon (5) - HFA - I cant believe this- but he now has tics. For a

while

> I thought it was a stim. I realise now- no way. He cant control

them.

I had the same thing happen with my son, involving a facial tic/sound

and arm movement. I first thought they were new stims, but they were

tics. The tics went away after a few weeks of antibiotic treatment,

the OCD has been more difficult.

> Some of you may remember me talking about his chronic tonsilitis-

and

> how they wanted to take is tonsils out- well that never happened

and the

> tonsilits hasn't gone away. This issue did arise a few months after

back

> to back strep infections.

Some parents find the PANDAS goes away after tonsilitis, some do

not. Here is some research on this topic:

PANDAS: pediatric autoimmune neuropsychiatric disorders associated

with streptococcal infections--an uncommon, but important indication

for tonsillectomy.

Heubi C, Shott SR.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=12880661

>We asked him if

> his throat hurt, and he did say no.

My son has culture tested positive for strep throat twice without any

symptoms of a sore throat. Just last week I got bloodwork results

back again that indicated extremely high antibodies, indicating

another recent infection, but no complaints of feeling ill. We did

not get a throat culture this time because we made the decision to

treat regardless of what the culture would show. Strep can reside

somewhere other than the throat, though the throat is typical.

> I think my doctor would be willing to order whatever tests, but I

dont

> know if he can interpret them. Anyone out there have this happen?

Have

> any ideas what tests are appropriate to determine PANDAS and what

> treatment works- if any?

He should consider a throat culture and blood tests to determine

levels of strep antibodies. Generally, the blood tests are for ASO

and Anti-DNAse-B. Pediatricians are very familiar with these tests,

however, not all pediatricians are familiar with PANDAS. You will

want to educate yourself with the information from NIH. You can find

some links here:

www.enzymestory.com/PANDAS

You might ask to have your daughter tested, too.

As far as treatments, reading through the archives of autism, OCD,

Tourette's and PANDAS message boards will give you some options

parents are trying (see my link above). Some do long-term

antibiotics, SSRI's for the OCD, other meds for tics, Cognitive

Behavioral therapy for OCD, IVIg, 5-htp, Inositol, GABA, Omega 3s,

etc. It is not easy to figure out what to do because all of the

prescription meds have risks and there is controversy right now

regarding possible industry cover-ups regarding some meds, and NIH

warns against the risks of IVIg and plasma exchange - in spite of

their positive results.

[Guest guest]

Also- when there are recurrent infections, all family members should

be tested with a throat culture for streptococcus to be ruled out as

carriers. In rare cases, a family pet can be a carrier.

> > Devon (5) - HFA - I cant believe this- but he now has tics. For a

> while

> > I thought it was a stim. I realise now- no way. He cant control

> them.

>

[Guest guest]

This happened with my sister's dog! Everyone kept getting strep back. my

sister got the worst of it.

Re: Tics- or PANDAS - Is my son needing specialized

doctors?

> Also- when there are recurrent infections, all family members should

> be tested with a throat culture for streptococcus to be ruled out as

> carriers. In rare cases, a family pet can be a carrier.

>

>

>

> > > Devon (5) - HFA - I cant believe this- but he now has tics. For a

> > while

> > > I thought it was a stim. I realise now- no way. He cant control

> > them.

> >

>

>

>

>

>

>

>

[Guest guest]

.. Her main symptoms are

> sensory/emotionality, rigidness, difficulty saying/decribing what

she is

> thinking,

Those are some of n's main yeast symptoms.

Nell

[Guest guest]

>>Her main symptoms are

> sensory/emotionality, rigidness, difficulty saying/decribing what she is

> thinking, constant hunger, and very minor obsessions-more like your

> average person.

For my son, those symptoms are yeast.

Except for the constant hunger, which for my son meant he was eating a

food or supplement he did not tolerate.

> I should rotate. Everytime I mess with her food- she flips. We are going

> to try removing all starches, and then add them back in. Maybe its corn

> or something. Which foods will enzymes not really help with?

For my son, enzymes did not help with artificials, rice, and luteins

http://www.saras-autism-diet.freeservers.com/Diet/Saras_Diet_I.html

All those food intolerances were gone with ALA chelation, but it was

not until round 70. And enzymes NEVER helped with those foods. My

son did not tolerate them, no matter what, until about round 70.

Good luck.

Dana

[Guest guest]

Geez! She tested her pet as well?

> Re: Re: Tics- or PANDAS - Is my son

> needing specialized doctors?

>

>

> This happened with my sister's dog! Everyone kept getting

> strep back. my sister got the worst of it.

[Guest guest]

,

Thanks so much for your information. Did you son actually get a PANDAS

diag., or do you consider him having the disorder?

> I had the same thing happen with my son, involving a facial tic/sound

> and arm movement. I first thought they were new stims, but they were

> tics. The tics went away after a few weeks of antibiotic treatment,

> the OCD has been more difficult.

Did you get your doctor to test and give an antibiotic?

> He should consider a throat culture and blood tests to determine

> levels of strep antibodies. Generally, the blood tests are for ASO

> and Anti-DNAse-B. Pediatricians are very familiar with these tests,

> however, not all pediatricians are familiar with PANDAS. You will

> want to educate yourself with the information from NIH. You can find

> some links here:

> www.enzymestory.com/PANDAS

>

> You might ask to have your daughter tested, too.

Have you tested for epstein bar virus in your family as well?

>

> As far as treatments, reading through the archives of autism, OCD,

> Tourette's and PANDAS message boards

I will, thank you.

Its strange- some mornings we will wake up fine, and others he is hyper

and having tics. I started giving him OOO, olive leaf, and biocidin 3x

day and the verbal tics have lessened. They also change somewhat

frequently. His obsessions have lessened a bit- but are like a roller

coaster in severity.

>

[Guest guest]

Dana, , Nell, and ,

Thanks much for responding to my post.

> <jenniferasmus@c...> wrote:

> >>Her main symptoms are

> > sensory/emotionality, rigidness, difficulty

> saying/decribing what she

> > is thinking, constant hunger, and very minor

> obsessions-more like your

> > average person.

>

>

> For my son, those symptoms are yeast.

I will treat it aggressively and see if it helps. Wouldn't that be crazy

if she had a bipolar diag. And it was yeast all along? I have treated

her before- but again- I couldn't tell that it made a big difference. I

will rule it out for sure this time....

>

>All those food intolerances were gone with ALA chelation, but it was

not until round 70. And enzymes NEVER helped with those foods. My son

did not tolerate them, no matter what, until about round 70.>

I am thinking about trying the same protocol as you use to see if I can

get more rounds in. The other way isnt working, and I really need to use

ALA.

>Dana

Thanks Dana

[Guest guest]

> I will treat it aggressively and see if it helps. Wouldn't that be crazy

> if she had a bipolar diag. And it was yeast all along?

When I have a major yeast issue, I probably am very bipolar.

> I am thinking about trying the same protocol as you use to see if I can

> get more rounds in. The other way isnt working, and I really need to use

> ALA.

Good luck.

Dana

[Guest guest]

At the insistence of the family Dr, who began to suspect that the dog was a

carrier.

Re: Re: Tics- or PANDAS - Is my son

> > needing specialized doctors?

> >

> >

> > This happened with my sister's dog! Everyone kept getting

> > strep back. my sister got the worst of it.

>

>

>

>

>

>

[Guest guest]

> ,

> Thanks so much for your information. Did you son actually get a

PANDAS

> diag., or do you consider him having the disorder?

>

His doctor has evaluated and treated it as PANDAS, but at this time,

PANDAS does not have an indisputable test. It involves tracking

behaviors, strep throat infections, and antibody titers to find a

correlation.