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In a message dated 1/17/01 10:05:03 PM Eastern Standard Time,

drella@... writes:

<< I started my older son on several drops of

homeopathic candida, and he went off the wall. >>

What homeopathic remedy did you use?

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Lori -

We had a regression problem before too so I know where you are. We

called this past summer the summer of hell. Our boy Vico got a hold

of stuff at school and we saw months of progress gone in a day. He

did come back, it took a while, about three or four weeks but every

day got progressivly better. We didn't know he had gotten the stuff -

so we weren't able to administer Serenaid or Enzyme Aid to help him

out. I have heard other folks say that these two products can help

our kids digest the gluten or casien and that it is good to have

either one on hand for accidents. Kirkman Labs sells Enzyme Aid:

www.kirkmanlabs.com

One of our accidents was Play Doh - even though he didn't eat it he

rubbed it into his skin and " went away " for a month.

It is very difficult when the go away after you have seen such

progress, but take heart - it means that you are on the right track!

Also, our descriptions of his regression to his ped impressed her so

much that she wrote a letter to the school district whiched helped us

get him a one-on-one aide.

Hang in there.

Moira

> My son (age 2.8) has been on the gluten/casein free diet

since Sept

> 1. He has done so well and has steadily improved since then. We

have not

> has one single regression until now. This is really hard to watch

and I am

> not aware of exactly what the problem is or was. His autistic

behaviors

> have returned, more tantrum, less eye contact, and overall less

> responsive. His therapists are shocked. My guess is he got some

> gluten. There was a homeopathic remedy that we are trying for

yeast that

> has alcohol in it. I called and they said it was corn-based but

then

> another e-mail said it is possible could be wheat based. He only

had only

> a total of 23 drops over 4 days. Could this has caused such an

intense

> regression? I have stopped this remedy but the regression has

> continued. If there was gluten in this or in something else, how

long will

> it take until I get him back? What can I do to help the process?

Could

> this reaction be a food reaction to something besides gluten or

> casien. What do I do to figure out and fix the problem?

>

> I would appreciate you help and experiences in this. This is so

stressful

> watching 4 months of progress disappeaer literally overnight!!!

>

> Thank you for any help you can give me.

>

> Lori from KS (mother of (NT) 12, (NT) 9, (NT),

and

> (Autistic) 2.8)

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Lori -

We had a regression problem before too so I know where you are. We

called this past summer the summer of hell. Our boy Vico got a hold

of stuff at school and we saw months of progress gone in a day. He

did come back, it took a while, about three or four weeks but every

day got progressivly better. We didn't know he had gotten the stuff -

so we weren't able to administer Serenaid or Enzyme Aid to help him

out. I have heard other folks say that these two products can help

our kids digest the gluten or casien and that it is good to have

either one on hand for accidents. Kirkman Labs sells Enzyme Aid:

www.kirkmanlabs.com

One of our accidents was Play Doh - even though he didn't eat it he

rubbed it into his skin and " went away " for a month.

It is very difficult when the go away after you have seen such

progress, but take heart - it means that you are on the right track!

Also, our descriptions of his regression to his ped impressed her so

much that she wrote a letter to the school district whiched helped us

get him a one-on-one aide.

Hang in there.

Moira

> My son (age 2.8) has been on the gluten/casein free diet

since Sept

> 1. He has done so well and has steadily improved since then. We

have not

> has one single regression until now. This is really hard to watch

and I am

> not aware of exactly what the problem is or was. His autistic

behaviors

> have returned, more tantrum, less eye contact, and overall less

> responsive. His therapists are shocked. My guess is he got some

> gluten. There was a homeopathic remedy that we are trying for

yeast that

> has alcohol in it. I called and they said it was corn-based but

then

> another e-mail said it is possible could be wheat based. He only

had only

> a total of 23 drops over 4 days. Could this has caused such an

intense

> regression? I have stopped this remedy but the regression has

> continued. If there was gluten in this or in something else, how

long will

> it take until I get him back? What can I do to help the process?

Could

> this reaction be a food reaction to something besides gluten or

> casien. What do I do to figure out and fix the problem?

>

> I would appreciate you help and experiences in this. This is so

stressful

> watching 4 months of progress disappeaer literally overnight!!!

>

> Thank you for any help you can give me.

>

> Lori from KS (mother of (NT) 12, (NT) 9, (NT),

and

> (Autistic) 2.8)

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> My son (age 2.8) has been on the gluten/casein free diet since Sept

> 1. He has done so well and has steadily improved since then. We have not

> has one single regression until now. There was a homeopathic remedy that

we are trying for yeast that

> has alcohol in it. I called and they said it was corn-based but then

> another e-mail said it is possible could be wheat based. He only had only

> a total of 23 drops over 4 days. Could this has caused such an intense

> regression?

Hi Lori,

I have used a lot of homeopathic remedies in this past year for my two sons.

I used to worry about the alcohol and its source, but I have since learned

that the celiac groups are starting to say that gluten will not turn up in

alcohol no matter what the source is. That being said, I can't guarantee

your son is not responding to the alcohol, but with my kids, it alway ended

up being the remedy itself they reacted to. Sometimes the reaction is what

you want--like a yeast die off. Just because it is homeopathic does not

mean it isn't powerful. I started my older son on several drops of

homeopathic candida, and he went off the wall. Once we pulled back the dose

a little and let him adjust to the yeast dying, he leveled out.

So you could be seeing a yeast die-off reaction. Or, the homeopathic remedy

may not be the right one for him. Does the doctor who is helping you with

this have a method for testing out a remedy for the child and determining if

it is appropriate?

If you are afraid to continue with this remedy for now, but you suspect your

son has a big yeast problem, you might want to go on a strict anti-yeast

diet if you haven't already done so. Take a couple of weeks to see how he

does with no sugar, yeast, fermented stuff, moldy foods like mushrooms and

cantalopes. If the yeast got all stirred up with this homeopathic remedy,

then clearing out his diet should help even him out. Just remember, though,

that if there is a lot of yeast in him and he is very reactive to it, the

act of eliminating sugar will cause some yeast die-off on its own. But if

you can tough out the upsetting behavior, it will be well worth it. I wish

I could say exactly how long, maybe days, hopefully not longer than a week

or so.

Of course, everything I have just said is assuming that there hasn't been

some major gluten or casein slip up. Watch everything he is eating very

closely. Also, there could be new food sensitivities popping up after four

months on the diet. The yeast issue seems most pressing, though, so I guess

I would focus on that first.

The hardest thing for me, after over 10 months on the diet, is to remember

that regressions always pass. It is a nightmare figuring it out and getting

through it, but the kids always come back. I don't think anyone has ever

had to start from square one again--it just doesn't seem to work that way.

Good luck--I hope he's back to normal soon!

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> My son (age 2.8) has been on the gluten/casein free diet since Sept

> 1. He has done so well and has steadily improved since then. We have not

> has one single regression until now. There was a homeopathic remedy that

we are trying for yeast that

> has alcohol in it. I called and they said it was corn-based but then

> another e-mail said it is possible could be wheat based. He only had only

> a total of 23 drops over 4 days. Could this has caused such an intense

> regression?

Hi Lori,

I have used a lot of homeopathic remedies in this past year for my two sons.

I used to worry about the alcohol and its source, but I have since learned

that the celiac groups are starting to say that gluten will not turn up in

alcohol no matter what the source is. That being said, I can't guarantee

your son is not responding to the alcohol, but with my kids, it alway ended

up being the remedy itself they reacted to. Sometimes the reaction is what

you want--like a yeast die off. Just because it is homeopathic does not

mean it isn't powerful. I started my older son on several drops of

homeopathic candida, and he went off the wall. Once we pulled back the dose

a little and let him adjust to the yeast dying, he leveled out.

So you could be seeing a yeast die-off reaction. Or, the homeopathic remedy

may not be the right one for him. Does the doctor who is helping you with

this have a method for testing out a remedy for the child and determining if

it is appropriate?

If you are afraid to continue with this remedy for now, but you suspect your

son has a big yeast problem, you might want to go on a strict anti-yeast

diet if you haven't already done so. Take a couple of weeks to see how he

does with no sugar, yeast, fermented stuff, moldy foods like mushrooms and

cantalopes. If the yeast got all stirred up with this homeopathic remedy,

then clearing out his diet should help even him out. Just remember, though,

that if there is a lot of yeast in him and he is very reactive to it, the

act of eliminating sugar will cause some yeast die-off on its own. But if

you can tough out the upsetting behavior, it will be well worth it. I wish

I could say exactly how long, maybe days, hopefully not longer than a week

or so.

Of course, everything I have just said is assuming that there hasn't been

some major gluten or casein slip up. Watch everything he is eating very

closely. Also, there could be new food sensitivities popping up after four

months on the diet. The yeast issue seems most pressing, though, so I guess

I would focus on that first.

The hardest thing for me, after over 10 months on the diet, is to remember

that regressions always pass. It is a nightmare figuring it out and getting

through it, but the kids always come back. I don't think anyone has ever

had to start from square one again--it just doesn't seem to work that way.

Good luck--I hope he's back to normal soon!

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  • 1 month later...
Guest guest

Debra- Hi- You have to find out if these meds are absorbable in your body. I

don't take any meds without asking my surgeon. I have a wierd thing that

happens to me. I sneeze when I eat. Like I am so excited. I sneeze-blow my

nose and then i am fine. Anyway, just make sure

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Guest guest

Both Claritin and Allegra may be time released, which doesn't tend to

work well for us. I have used Zyrtec for awhile, since the others

stopped working. It is a quick acting drug and has continued to work

well for me post-op.

Vickie Hewitt

West Chester/Exton PA

Aetna USHC PPO approved me the day it was submitted.

DS Surgery w/ Dr Herron 12/08/00

Pre-OP Wt. 283.5 BMI 47.2

03/09/01 Wt. 229 BMI 37.0 -54.5 lbs (and Holding)

> Have any post ops had problems with meds no longer working. I have

> allergies and pre-surgery for years I took Claritin and it worked

> great. It no longer works, I sneeze all the time. My PCP had me try

> Allegra but that is no better. Has any one had this experience, if

so

> did any thing work? Thanks for you help

>

> surgery 1/18/01

> Dr.B Spain

> 294/254

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Guest guest

Debra --- I had my ornade taken away from me ... and put me on the Allegra which did not seem to work at first ... but I kept using it and the sneezing finally went away!

Judi in MS

Pre-op Surg on 3/6/01

Dr. Kim/Dr. Booth

BMI 59

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  • 9 months later...

I am hoping that someone can help me. I am in a desperate search for a primary care doctor in the Marietta, Georgia area who is familiar with MSA. The doctor I have now is an absolute nightmare. He knows nothing about MSA and has the attitude, even after explanations from my neuro and gastro that since he does not know much about it that I do not have MSA. Oh, how I wish that was true, but that is not the case.

I know that there are probably many doctors at Emory that could help me but that also presents another problem. My neuro will not let me drive because of the many blackouts and I am forced to rely on my mother for transportation and she will not drive in Atlanta. In fact she yells and moans about the fact that she has to take me to doctors just a few miles away so often. I am really not trying to sound like I want a pity party it just scares me that if she is already this stressed out by just having to drive me places, what is it going to be like when things get worse. I already had to discontinued the speech therapy which was helping so much with my swallowing problems because she "did not feel like being my taxi 3 times a week."

I guess this kind of went from asking for help finding a doctor to rambling into looking for general advice on how to deal with not having a support system.

I am sorry to ramble, I think I am just so overwhelmed by all of this. I am only 36 and have 2 boys 12 and 5 and unfortunately my husband has decided that he wanted a divorce because he could not deal with all of this.

Again, sorry to ramble, I think I just needed some advice and also a chance to vent to someone who has been through all of this before.

Thanks to everyone,

Kim

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Kim,

Here are doctors in other Georgia cities that know about movement disorders:

Donna McConnell, MD., Kapil Sethi, MD.MDS., Debra A. Gearhart, MD. MDS

Medical College of Georgia - Center of Excellence

1120 15th Street

Augusta, GA 30912

7067219445

sville

, MD.

958 Joe Parkway

Suite 105

sville, GA 30120

7703826333

Lawrenceville

Arthur Schiff, MD. MDS

500 Medical Center Blvd

Suite 340

Lawrenceville, GA 30045

7709950886

Lithia Springs

B. Bashuk, MD

2550 Windy Hill Rd. #305

Lithia Springs, GA 30067

4049443616

Macon

Lauterback, MD. MDS

Mercer University

655 First Street

Macon, GA 31207

9123014033

Savannah

Garrett, MD. MDS

4 Blvd.

Savannah, GA 31405

9123551010

Tucker

R. Lesch, MD.

1459 Montreal Road

Suite 207

Tucker, GA 30084

4049383864

And here is a place where you can get a referal to a movement disorder

doctor (Parkinson's)

APDA Information & Referral Center

EMORY UNIVERSITY SCHOOL OF MEDICINE

1841 Clifton Road, N.E., Rm. 326

Atlanta, GA 30329

P. Watts, RN, BSN, Coordinator

FAX

Celeste Duddleston, RN,BSN, Co-Coord.

FAX:

Ray L. Watts, MD, Director

Take care, Bill Werre

========================

Dolphin2001XX@... wrote:

I

am hoping that someone can help me. I am in a desperate search for

a primary care doctor in the Marietta, Georgia area who is familiar with

MSA. The doctor I have now is an absolute nightmare. He knows

nothing about MSA and has the attitude, even after explanations from my

neuro and gastro that since he does not know much about it that I do not

have MSA. Oh, how I wish that was true, but that is not the case.

I

know that there are probably many doctors at Emory that could help me but

that also presents another problem. My neuro will not let me drive

because of the many blackouts and I am forced to rely on my mother for

transportation and she will not drive in Atlanta. In fact she yells

and moans about the fact that she has to take me to doctors just a few

miles away so often. I am really not trying to sound like I want

a pity party it just scares me that if she is already this stressed out

by just having to drive me places, what is it going to be like when things

get worse. I already had to discontinued the speech therapy which

was helping so much with my swallowing problems because she "did not feel

like being my taxi 3 times a week."

I

guess this kind of went from asking for help finding a doctor to rambling

into looking for general advice on how to deal with not having a support

system.

I

am sorry to ramble, I think I am just so overwhelmed by all of this.

I am only 36 and have 2 boys 12 and 5 and unfortunately my husband has

decided that he wanted a divorce because he could not deal with all of

this.

Again,

sorry to ramble, I think I just needed some advice and also a chance to

vent to someone who has been through all of this before.

Thanks

to everyone,

Kim

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