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PANDAS/tourettes syndrome

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PANDAS/tourettes syndrome

Posted by Tribby on February 06, 2001 at 14:31:03:

Dr Dr. Stoll

My 15 year old daughter had her CDSA 3 day purge/Heom, Blood food allergy panel, inhalant, parasitology/candida yeast blood and fecal work done at Great Smokies before Christmas. Still awaiting results of chemical ring.

Labwork showed severe gut dysbiosis with elevated pancreatic enzyme levels and no bifidus, normal levels of lactobacillus and low levels of E-coli. Food allergies indicated IgG antibodies to ALL 104 foods tested for! Also many IgE allergies to food. No inhalants allegies detected. No candida yeast and no parasites detected. No history of ear infections or antibiotic mis/overuse during childhood. No history of improper diet (read: Mom is a terrific "from scratch" cook!)

Child has been on a dairy/gluten/dye free diet for 8 months with substantial improvement in raging/tantruming behaviour when she stays on the diet! Diet is now rice based.

Official diagnoses from her pediatrician is PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) with a comorbid diagnoses of Tourettes Syndrome.
MRI is on tap and 2 night sleep EEG has been completed. Child is watched for all signs of recurring strep infections. She is currently under the care of a naturopath and medical pediatrician (who totally accepts the Naturopath). Chronically constipated after 14 years of chronic diahrea. Toxic lead, aluminum, cadmium and calcium poisoning evidenced in hair analysis.

School is a total bust! Behaviour is outrageous. Any help or ideas? Have read all the books! Part of www.conductdisorders.com and www.Time2unwind.com support boards. Much help here! Parents paid for all lab work as insurance covers none of it and doctors felt it wasn't necessary as she was just "ADD/ODD"!




Re: PANDAS/tourettes syndrome

Posted by Walt Stoll on February 08, 2001 at 13:08:24:

In Reply to: PANDAS/tourettes syndrome posted by Tribby on February 06, 2001 at 14:31:03:

Hi, Tribby.

What a tragedy for you both.

It is unlikely that you will get her to do SR which would be a cornerstone of eliminatiing her LGS. See "Medicating with Childred" by Deborah Rozman. Unfortunately, you only have a limited period of time (perhaps a year or so from when she started it) before her rice also becomes a problem and the only way to avoid that is by eliminating the LGS before it happens.

It is possible that a good Clinical Ecologist, in your area, might give you enough breathing room to get a handle on this incredibly complex problem. If only someone had known what is NOW known, 13 years ago, much of her damage could have been prevented. We are still in our infancy of the rapidly developing information in this area.

The best way for you to bring yourself up to the world reseearch in this area would be for you to contact (800) 843-9660 and ask them how you could get copies of the monthly tapes that have stuff about problems like this with brain chemistry for the past year. They will include the bibliography with the researcher's contact information for your docs to educate themselves if they will.

See the glossary for how to find a Clinical Ecologist in your area.

Let us know how she does.

Namaste`

Walt



Re: PANDAS/tourettes syndrome

Posted by Zan on February 08, 2001 at 14:48:41:

In Reply to: PANDAS/tourettes syndrome posted by Tribby on February 06, 2001 at 14:31:03:

Tribby,

You might want to search the web for Neurofeedback. Some researchers have reported improved behavior in children with these disorders.

www.eegspectrum.com




Re: PANDAS/tourettes syndrome

Posted by Tribby on February 11, 2001 at 13:49:07:

In Reply to: Re: PANDAS/tourettes syndrome posted by Walt Stoll on February 08, 2001 at 13:08:24:

Thank you Dr. Stoll for answering my post. I also assummed she had LGS but she tested clear for candida yeast! Testing also indicated her levels of all supplements were normal and processing properly. I'm sorry but I don't know what SR is and find no reference to it in your glossary pages. I am a Canadian and we don't have clincial ecologists!

Her naturopath is currently administering oil of oregano (St. Mary's, full strength) as well as Thorne's fractionated pectin and we have notice a substantial improvement in bowel movements. Unfortunatly herbal detox (Genestra) and plumbum (Dolosis for lead poisoning) made her extremely ill with vomiting. After oil of oregeno our Naturopath intends to work with Berberine. She is totally penicillian resistant (per testing) and has antibodies to the traditional antibiotics. She was childhood vaccinated which I deeply regret!

We were watching old (l990) home videos today and were shocked at the deterioration of this child's abilities! I pulled out old schoolwork and was horrified at the changes that have occurred in her written and mathwork in the last 10 years.

You used the word tragic. It surely is. We are currently trying to arrange an MRI to determine the extent of the basal ganglia damage. This is difficult as she is outside the "catchment" area for our local MRI machine! How I loathe organized medicine, Sir!

I too am concerned about the rice allergy possibly raising it's ugly head as she is allergic to wheat, soy, eggs, anthing from the water, most meats and fruits and vegetables and beans! A vegetarian diet is out of the question. She eats organic in vegs and meat when possible. I grow a great deal of garden stuff and freeze it. It would appear that anything she puts into her mouth eventually creates antibodies. As she has no inhalant (ragweed, pollen, etc) allergies we laughingly told her after she starves to death we shall bury her in a great big field full of flowers and trees! Thank goodness she has retained her sense of humour!

She starts back to school on Monday with a fully modified programme of light school work in the AM and then to the local animal shelter for an afternoon co-op. Animals are the only area of interest she has been able to sustain an attention span past her diagnosed attention span of 8 SECONDS. She has a documented NO SHORT TERM MEMORY, but normal long term memory so traditional education is out of the question. All this in a beautiful child who looks and perfectly normal and healthy and is wonderfully articulate and obviously intelligent. Heartbreaking!!!!

Thank you for your time, sir and if you can come up with ANY ideas we are open to them.

Tribby




Re: PANDAS/tourettes syndrome

Posted by
Deb on February 11, 2001 at 15:14:16:

In Reply to: Re: PANDAS/tourettes syndrome posted by Tribby on February 11, 2001 at 13:49:07:

Hi Tribby,

Just a thought, but could be worth following up on. If there is anywhere in your area that you can train in Reiki, you could "Reiki" her for 1/2 an hour 2x a day as SR for her. It should only be a one day or weekend to learn Reiki I.

Hope this helps a little,

Deb.



Re: PANDAS/tourettes syndrome

Posted by Walt Stoll on February 13, 2001 at 10:41:49:

In Reply to: Re: PANDAS/tourettes syndrome posted by Tribby on February 11, 2001 at 13:49:07:

Hi, Tribby.

Listen to deb (Thanks, deb!); I should have thought of that!

Go to ahna.com (American Holistic Nursing Association) for the closest Reiki practitioner.

SR stands for Skilled Relaxation. It is all over the 'site.

Also go to www.aaem.com OR administrator@aaem.com for the closest Clinical Ecologist to you. See the archives for other resources.

Let us know how she does.

Namaste` to you both!

Walt



Re: PANDAS/tourette's syndrome (Archive in brain problems.)

Posted by Walt Stoll on February 13, 2001 at 10:45:46:

In Reply to: Re: PANDAS/tourettes syndrome posted by Tribby on February 11, 2001 at 13:49:07:

Also, look into Jean Houston's center in New York. She has written many books about how to retrain the brain with conditions like this. Box #600 Pomona, NY at (914) 354-4965. When you learn her website I would appreciate your sharing it with us.

Walt



Re: PANDAS/tourettes syndrome

Posted by Tribby on February 14, 2001 at 19:29:19:

In Reply to: Re: PANDAS/tourettes syndrome posted by Walt Stoll on February 08, 2001 at 13:08:24:

Deb, Dr. Stoll, thank you for your follow ups. As soon as you said Skilled Relaxation, my palm hit my forehead! Of course I know this!!! Feeling a bit overwhelmed with this child plus 2 others and a busy husband/life! Reiki sounds interesting. I know of this but nothing about it. That will change shortly. I will check out all info posted and I thank you all. I shall return!

Tribby



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