Recovery Plan

This is the actual recovery plan I put together. It includes the history, research, options, improvements, etc. It was a work in progress. Most of the information contained in it can be found under the respective webpages. There are updates added with some repetitive info.

1. Review of History
2. Nutritional Assessment/Food Sensitivity Discovery
3. Current Progress
4. Baseline of Current Symptoms/Behaviors
5. Goals
6. Possible Avenues of Treatment
7. Course of Action
8. Conclusion

1. Review of History

3. Progress

Kaiden continues to improve on the elimination diet. Occasional exposures to “bad” foods cause some setback but only momentarily. Early “obsession” with music cube abated. Pushing forehead along carpet has stopped. Headbanging has diminished. As Kaiden becomes older, more “autistic” behaviors become apparent. Seventeen months old seems to have been the peak of behaviors. However, homeopathy treatments have been miraculous this past month with great improvement. He is very social, smiles and laughs often, says hi to everyone. He notices things in his environment and notices other people at home. After the elimination diet, Kaiden began sleeping 12 hours per night with a 1-2 hour nap.

Homeopathy Treatments began 11/20/2002

4. Baseline of Current Symptoms/Behaviors as of January 2003

· Does not pretend “play” with toys or play w/sister
· Wanders around all day
· Preoccupation with coloring
· Preoccupation with phone/ ringing
· Preoccupation with boots
· Headbanging when mad/frustrated
· Spins 1 – 2x/day
· Walks on tiptoes (started after exposure to cornstarch)
· Reflux on decrease of pepcid
· Severe food sensitivities continue
· Frequent congestion/colds (environmental allergies)
· Frequent raw, red diaper rash
· Weak muscles - Hypotonia
· Drunken sailor walk, falls down often, falls into things
· Frequent loss of balance
· Difficulty climbing up on furniture, rag doll like
· Cold to the touch – does not sweat
· Frequent hugging but more of a sensory experience – folds arms under and lays head on shoulder
· Sighs frequently, difficulty (does not) exerting himself
· Sensitive to touch, does not like ears, fingers, or toes touched
· Delayed response (waves bye-bye 3 minutes after leaving)

5. Goals

1. Eliminate headbanging and spinning
2. Find a “safe” vitamin supplement
3. Discontinue (need for) Pepcid
4. Eliminate (or at least reduce) food sensitivities
5. Improve muscle tone and coordination
6. Improve speech (assess if necessary given age)

6. Possible Avenues of Treatment

1. Yeast – Organic Acids Test (candida and clostridia) – Great Plains Laboratory
Earlier reaction to Tagamet - Herxheimer reaction? – yeast die off? (Bloating, nausea, vomiting, eczema, stuffiness) Question: Does Pepcid act the same as Cimetidine? Tagamet stimulates the white blood cells to kill the Candida.

Symptoms of intestinal yeast: fatigue, sleep disturbances, increased allergies, diaper rash (yes to all)

Avenues if positive:
· Probiotics: Lactobacillus acidophilus GG – 5 billion cells/day and/or
· Nystatin (125,000 units per cc) in a stevia base, 1 cc 4x/day
· Future precaution: prescribe nystatin as above when on broad spectrum antibiotics as they destroy acidophilus

2. PST Deficiency – test necessary? Liver detoxification test or MHPG sulfate & glucuronide ratios (Smith Kline Beecham Laboratories). Possible liver toxicity from Diflucan treatment (4.5 weeks of med at 3 weeks old – spitting up bile, no BM for 10+ days)? PST deficiency seems likely given difficulty with phenolic foods.
a. Treatment is decrease toxic load via diet (already doing) and increase body’s ability to detoxify itself (Epsom Salt Baths – just started)

3. Test for Gut Permeability (leaky gut test)?

4. Test for possible Immunodeficiency?*
a. Immune deficiency panel (IGM, IgG, IgE, IgA, IgD) Great Plains Laboratories

*It has been found that antibodies against acetaldehyde-altered proteins may cross react against formaldehyde-altered proteins. The toxins from diphtheria and tetanus bacteria are treated with formaldehyde to prepare the DPT vaccine. It is possible that if a child possesses antibodies against acetaldehyde-modified proteins due to yeast overgrowth, the vaccine may stimulate a marked increase in the autoimmune reaction, perhaps leading to a severe adverse immune reaction.

5. Test for Heavy Metal (Mercury) Toxicity?
Submit lock of baby hair for hair analysis?

6. Gluten and casein sensitivity testing would not be accurate given the absence of casein since 11/2001 and gluten since 7/2002.

7. Test antibodies for Tetanus, (Pertussis, and Polio)?
Parallels between tetanus and autism. High antibody levels from vaccine? Possible one or more of the toxins in vaccine much more toxic to Kaiden than to average child immunized. (Hereditary component.)
(Note: blood test showed elevated levels of tetanus antibodies.)

7. Course of Action

· Continue with homeopathy treatments
· CDS follow up meeting scheduled for Friday, 1/3/03
· Possible OT, PT, or speech therapy given outcome of CDS assessment
· Supplement with DMG, DiMethyl Glycine?
· Find tolerable EFA
· Introduce white fish?
· Pursue biological testing and treatments?

8. Conclusion

Kaiden is making amazing progress on the elimination diet and with the homeopathy treatments. He is a very affectionate child and is mostly agreeable and easygoing. Our goal is to do everything possible to ensure he is as healthy and happy as possible.

Update on Progress - 2/19/2003

Note:
· Removed bananas 12/17/02, challenged 12/25/02. Result: severe gastro upset and no sleep for 2 days.
- “Drunken sailor” gait gone within 2 weeks.

· Removed all corn residue (corn syrup, corn starch, corn flour) as of 1/27/03. (Started licking things after introducing a homemade cookie with corn starch in it.)

· Dose of remedy 1/30/03

- As of 2/19/03, not a single head bang in over 14 days
- Not a single rage in over 15 days

Current baseline of symptoms/behaviors as of 2/19/03 - 19+ mos.

Update 11/24/2003
2nd Dose of DPT remedy 11/12/03

Update 12/27/03

· Introduced NoFenol enzyme in October 2003. Caused significant yeast die off. Tolerates bananas, peaches, and sheep yogurt with the NoFenol.

· Self-weaned from breastfeeding October 27, 2003.

· Using words spontaneously and appropriately. Age appropriate for speech!

· Self-created language diminished. Calls people by name. Refers to self by name. Recognizes self in mirror. Uses pronouns (you & me) appropriately.

· Experimenting with NAET (allergy elimination technique) – acupressure. Successfully introduced eggs. Dairy will not clear – causes nightmares and occasional stim.

· Yeast under control, gut healthy!

Last remaining issue: Food intolerance!

Yahhooooooo!

3/15/04 Update, 32 months old

2/13/04, 3rd DPT remedy dose

· Talking in full sentences.
· Completely cognizant and articulate.
· Loss of made up language.
· No residual autistic behaviors except on food exposure.
· Echolalic but also speaking his own words and thoughts.
· Very expressive.
· Recognizing letters and numbers in books. Recognizing some words.
· Understands concepts of emotion, expresses his own emotions, concerned with others’ emotions (happy, sad, mad, etc.).
· Crying with injury.
· Completely potty trained night and day.
· Dresses himself completely.
· Able to tolerate dairy in small, infrequent doses.
· Tolerated green beans on one occasion.
· Tolerated squash with NoFenol on one occasion.
· NAET failed to clear anything but egg.

Only remaining issue: food intolerance

Update: 11/07/2004

1. Very normal, healthy 3 year old.
2. Speaks way above age level.
3. Attends preschool with no mention of autism.
4. Memorized 50 dinosaur cards (pachysephalosaurus,eustreptospondylus).
5. No stimming except on food exposure.
6. Very loving and sweet.
7. Very, very social - loves playing with other kids, loves talking with adults.
8. Very well behaved.
9. Terrific sense of humor.
10. No hives, no stomach distress.
11. Dairy cleared with NAET.

Diet:

Current supplements:

· Love Bites Multi-Vitamin
· Culturelle (when needed)
· GSE - 2-3 times / week
· NoFenol enzyme
· Carlson's Cod Liver Oil

Update - July 2005:

Introduction of all foods to diet with NAET. Minimal reactions or behaviors have tapered off. Still maintains Culturelle, GSE, and NoFenol for maintenance. Still continuing with homeopathy. Love-Bites all natural daily multi-vitamin. Appears healthy, happy, and NT (neurologically typical)!!

Update - June 2006:

Completely off the diet with no issues for almost one year now. Starting kindergarten in the fall. Doing fantastic. Very happy, loving, sweet, healthy child with no issues to speak of. Still continuing homeopathy, occasional Culturelle, multi-vitamin, and NoFenol. We are truly blessed!

Kaiden is doing fantastic. He is in the 1st grade and has many friends. He continues to eat a normal diet. He no longer needs NoFenol enzyme (after Thimerosal homeopathic remedy). All learning is on schedule or ahead. He has no developmental or learning issues. Please see the blog for further updates.

He now takes a daily Love Bites multivitamin and a semi-regular probiotic. We rotate between Culturelle, GSE, ProBioGold, and FloraBears. He also receives a homeopathic remedy as part of his constitutional treatment when necessary. This is the protocol we maintain for all members of our family.

Previous Supplement List

1. DMG - DiMethyl Glycine
2. Carlson’s Cod Liver Oil
3. Houston Enzymes: No-Fenol
4. Culturelle - Lactobacillus GG - 10 billion cells
5. Kirkman’s Hypo-Allergenic Super Nu-Thera
6. Kirkman’s Calcium and Vitamin D supplement

Resources:

Unraveling the Mystery of Autism and Pervasive Developmental Disorder, Karyn Seroussi, 2000.

Footnotes:

1 Jorizzo J. Cimetidine as an immunomodulator: chronic mucocutaneous candidiasis. Biotherapy 9: 13-16, 1996.

2 Shaw, Ph.D. William. Biological Treatments for Autism and PDD. p. 58, 2002.

3 Pietrzak E et al. Antibodies made against a fomaldehyde-protein adduct cross react with an acetaldehyde-protein adduct. Implications for the origin of antibodies in human serum which recognize acetaldehyde-protein adducts. Alcohol Clin Exp Res 30:373-8, 1995.

4 Dupont P. Candida albicans, the opportunist, a cellular and molecular perspective. J Amer Podiatr , Med Assoc 85:104-115, 1995.

5 Shaw, ibid. p. 68.

6 Bolte, Ellen. Autism and Clostridium tetani. Med Hypotheses 1998 August; 51(2): 133-44.