Wish For Allie

Biomedical Treatment

Update 4-1-14
After extensive biomedical and non traditional treatment I concluded most of it did not work. The only treatment that helped was Fluconizole to rid yeast.

Our goal for the next 6 months is to do extensive biomedical treatments to help Allie's brain heal. Then the goal is to slowly drop one med at a time. This is a long process and doing more than one therapy at a time can be overwhelming to her body and her spirit. It is essential to do treatments systematically and to log, track, write down details of everything treatment that Allie goes through. 
Cal - Mag twice daily. 300/300 mg.
Vitamin D3 - 1000 IU daily. - no side effects. Will keep her on this, we live in Minnesota.
Fluconizole - yeast die off. Great behavior, high energy, good clear head for 30 days. Stool normal.
Lactobacillus acidophilus GG - controlling Clostridia species. Allie had high HPHPA (Clostridia marker) in her urine.
Levocarnitine 330 mg twice daily. - good response, better mood.
Vitaspectrum - D/C gave Allie a rash on arms.
Fish oil - D/C caused daily nose bleeds
Green muscles - D/C was prescribed, but we did not try because it is a blood thinner. Allie has a lot of bloody noses and bruises very easily.
Longvida (curcumin) 250 mg once daily - brain function. This gave Allie bloody noses. 
B12 INJECTIONS 1-17-12 Every other day .05 cc. Dr. JK - these made her extreemly tired. Will try in 30 days again.
We plan to add these supplements slowly:
Quercetin - anti-inflamatory.
Grape seed extract - anti-inflamatory.
Vitamin B2, Vitamin B12, Folate, Vitamin C, Pantothenate, and Choline.
2-8-12 Neurofeedback- A.K.A Biofeedback

Our latest biomedical treatment is Neurofeedback. We had our first appointment yesterday 2-8-12, for 1 1/2 in the office in Edina, Dr. JN. E and I love this guy! 
He took out the large heavy Diagnostic and Statistical Manual (DSM-IV) book from his bookshelf and said this is the greatest fictional book ever written. He introduced us as a scientist. This is very refreshing to us. He is a trained psychologist but has worked on brain science in his practice. He actually said she doesn't have autism she has had a traumatic brain injury and epilepsy. We always knew autism wasn't the root cause she just had to get that diagnosis to make the school understand her. 40 sessions. These sessions will be 3 times a week, hour sessions in Edina. I will pull her out of school to do this. This dr. actually thinks seizures will be improved. 
The homework he gave us to read is this on PUBMED.gov from a M. Barry Sterman, PhD Biofeedback in the treatment of epilepsy

http://www.ccjm.org/content/77/Suppl_3/S60.long Neurofeedback is a treatment for ADHD, Autism, Epilepsy, TBI, and other brain disorders. 

Quantitative Electroencephalography (QEEG) is the use of digital signal analysis to extend the analysis of electroencephalography (EEG). Dr. John Nash at Behavioral Medicine Associates, Inc. 4820 West 77th Street, Suite 135, Edina MN 55435. http://www.qeeg.com/
During this hour long EEG, she was asked to close her eyes for 5 min, read a book, verbalize math equations and draw a house and other characters on a sketch pad. Luanne the tech was excellent. 
The results were overwhelming. For the first time in 8 years we actually saw evidence of abnormal brain activity in certain locations of her brain. We begin the first 20 sessions next week. May go up to 40 sessions. This is a good link to explain Neurofeedback : 

11-30-12 Dairy Free, Soy Free Diet-

The hardest for an 8 year old is to have a restriction. Dr. JK put her on a 3 month no dairy or soy diet. The first week was really hard, by the third week I was a pro. I knew how to read labels and cook. Time consuming...yes. Going to the grocery store took twice the amount of time it usually would take due to reading the labels. When she was 3 she was put on GFCF diet. She had break through seizures after 10 days. We are guessing the anti seizure meds were metabolizing differently due to the "non eating". She just would not eat. Fast forward 5 years later and we start again - just dairy free this time. I have seen no changes in her behavior. Still the same. Dr. JK says "don't quit". We have all lost weight. Really the easiest diet if anyone wants to loose a few in my opinion. 
It was 3 months into the dairy free diet. We gave her two pieces of cheese pizza to eat. 12 hours later she was biting, eyes glossed over and raging for 2 hours. Coincidence? Dr. JK says no dairy again. 

Allie had a lab test done and she was found to have a fructose sensitivity. We try our hardest to avoid sugar and hidden sugar. Here below is a great reference guide. 
Processed starches that behave like sugar in your body are white flour, white rice, pasta (unless the flour is listed as 100% whole wheat), enriched flour, tapioca, cornstarch and processed breakfast cereals.

The most common names for sugar are: barley malt, corn syrup, dextrose, fruit juice concentrate, glucose, high-fructose corn syrup, maltodextrin, maltose, molasses, raw sugar, sucrose and turbinado sugar.

Here's a more complete sugar list with 69 sugar names. http://commonsensehealth.com/Diet-and-Nutrition/List_of_Sugar_Names_and_Sugar_Facts.shtml

List of Sugar Names

Agave nectar
Barbados Sugar
Barley malt
Beet sugar
Blackstrap molasses
Brown sugar
Buttered syrup
Cane crystals
Cane juice crystals
Cane sugar
Carob syrup
Castor sugar
Confectioner’s sugar
Corn syrup
Corn sweetener
Corn syrup solids
Crystalline fructose
Date sugar
Demerara Sugar
Diastatic malt
Evaporated cane juice
Ethyl maltol
Florida Chrystals
Free Flowing
Fruit juice
Fruit juice concentrate
Glucose solids
Golden sugar
Golden syrup
Granulated sugar
Grape sugar
Grape juice concentrate
High-fructose corn Syrup
Icing sugar
Invert sugar
Malt syrup
Maple syrup
Muscovado sugar
Organic raw sugar
Powdered sugar
Raw sugar
Refiner’s syrup
Rice Syrup
Sorghum syrup
Syrup Syrup
Table sugar
Turbinado sugar
Yellow sugar

The sugar industry is constantly coming up with new sugar names. So be on guard for new hidden sugars with insulin spiking ingredients. From this terrific website - http://commonsensehealth.com/Diet-and-Nutrition/List_of_Sugar_Names_and_Sugar_Facts.shtml


We ordered an indoor trampoline for Allie. We live in Minnesota and the winters are long and cold. It appears from past winters Allie's behaviors are more extreem during these winter months. 

Here is a great article I found online. 

Exercise: An Alternative ADHD Treatment Without Side Effects

....“Exercise turns on the attention system, the so-called executive functions — sequencing, working memory, prioritizing, inhibiting, and sustaining attention,” says Ratey, author of the forthcoming Spark: The Revolutionary New Science of Exercise and the Brain(Little, Brown). “On a practical level, it causes kids to be less impulsive, which makes them more primed to learn.”... From this link...

Essential Oils - 2-1-12Jasmine oil in a diffuser is placed by her bedside. It turns on and off every two hours throughout the night. I have read that Jasmine oil may have helpful benefits for epileptics. http://www.livestrong.com/article/13214-prevent-epileptic-seizures/

However ,note to be careful when choosing a scent. These oils are safer : 
  1. Jasmine
  2. Camomile
  3. Lavender (our family favorite!)
  4. Ylan-Ylang

Some oils can CAUSE seizures. More info here http://www.epilepsy.com/epilepsy/alternative_oils

Not safe:
  • Camphor, cinnamomum cuphorata
  • Hyssop, Hyssopus officinalis
  • Fennel, Foenicum Vulgare
  • Rosemary, Rosmarinus officinalis
  • Sage, salvia officinalis
  • Wormwood, Artemisia spp.
  • Cinnamon, Cinnamomum vercum 
  • Clove, Caryophyllus aromaticus
  • Nutmet, Myristica fragrans
  • Black pepper, Piper nugrum

Light Therapy is the exposure to daylight or a type of indoor lamp used to treat seasonal affective disorder. We do this occationally January and February. I have to admit we have not been consistant with this treatment. We put a timer on for 30 min and expose her to the light box. 

ABA Therapy - We are on two waiting lists and one organization doesn't take a list. There are not enough therapists to go around apparently. 

Hyperbaric Chamber Treatments -
Soon to try summer 2012.

IVIG treatments -  
Currently working with Dr. Mark Schleiss, MD at U of MN Infectious Diseases. More to report later after researching IVIG treatments.