Namenda; After 2 Months

It has been just over two months since we put our 13 year old on Namenda*. We started at a daily dose of 5mg and almost immediately started seeing mild results.

This week we upped her dosage to 7.5mg and INSTANTLY saw an increase in mannerisms, tone inflection and number of words in her sentences!

God help us as we are rendered completely defenseless on going from Autism to typical 13 year old girl virtually overnight! How exciting this process is going to be!

*Information:

Namenda
http://www.namenda.com/?WT.srch=1&guid=286163689

Memantine Clinical Research Study: Month 2-3

It has come to our attention that the Memantine* is actually the generic version of Namenda*, a drug, already on the market for Alzheimer's, used at parent/doctor discretion for experimental autism therapy.

We are entering our 3rd month in clinical trials at Children's National Hospital in Washington DC.
This trial is focused on allowing Memantine* to enter the FDA approved market SPECIFICALLY for the use of treating Autism in children under the age of 12. His dose has doubled to 6mg a day, in the for of two 3mg capsules.

To date we have seen some improvement in sentence structure, number of words used in a given sentence and also more "typical" social outreach. For example, this morning our 11 year old looked at me and said, "Ally, tickle tickle!" and then smiled and started ticking me under my chin.

We have also seen some negatives that have been somewhat of a concern. The STIM behavior is at a recent high; loud and aggressive noises with constant repeating of word phrases. These behaviors couple with severe headache, diarrhea, loss of interest in food and what appears to be nausea (I say that loosely as we don't know exactly how he feels as he cannot communicate it directly).

Food for thought:

Our 13 year old is on Namenda* already, they started about the same time frame. She never experienced side effects such as headache or over all ill disposition, but did suffer the increase of STIM activity including loss of sleep on a regular basis (waking at ours like 4am and 5am for the day).

She has also shown a large increase of number of words used in a sentence along with an enormous increase in use of typical "quips".


*Resources:

Namenda

http://www.namenda.com/?WT.srch=1&guid=286163689

Memantine

http://en.wikipedia.org/wiki/Memantine

The Ultimate GF, Casein Free, Weight Gain Shake

Many of you out there know exactly what it is like to have an autistic child who over eats or under eats. Unfortunately, we have one of each. For years it has been a constant battle as to keeping one out of the cupboards and force feeding the other. However, newly found hope is in sight!

A few months ago we started doing raw milk kefir smoothies* per the "Brain Food Diet". We purchased a cow, bought the kefir cultures and see the milk man at our door every Thursday. Routine shakes, less "stym-ing" and the cycle continues; until we bought a nutribullet.

OF COURSE! This makes so much sense! Lets add things to the smoothie! Our picky eater is more than picky; he has efficiently illuminated all foods out of his diet except millet bread, rice, rice pasta and GF "treats" of any kind. 58lbs and 11 years of age; we needed something resourceful, and fast, so I developed the perfect recipe to please both our little sweet tooth junkie and our eager nurturing hearts.

1 regular banana
4oz of organic, unsweetened applesauce or a "snack-pack" apple sauce
42g (or one scoop) any vegan Shakeology* mix
1 cup frozen, mixed organic berries (excluding strawberries, see "Brain Food Diet"
1-2Tbs liquid, alcohol free, stevia
2 Raw eggs (preferably the highest quality organic eggs available to you)
1tsp fermented spirulina (we use "Body Ecology")

This concoction contains over 700 calories, over 30g of protein and is loaded with natural fiber, probiotics and nutrients. Though it resources ingredients from unique places, nothing is more satisfying than seeing our kid drink an entire shake full of hope for growth into his future!



Ingredient & Equipment Information:

Shakeology
www.shakeology.com

Body Ecology
www.bodyecology.com

Nutribullet
www.nutribullet.com

What is Spirulina?
http://en.wikipedia.org/wiki/Spirulina_(dietary_supplement)

Memantine Clinical Case Study: 2nd Month

We are now entering into our second month of our participation in the Memantine clinical research study at Children's National Hospital in Washington DC.

So far we have noticed a small increase in use of "typical" language in most sentences as well as larger sentence formation. We are thrilled to have a new understanding for what is going on inside our 11yr old's head!

Negative side effects that we have seemed to find that correlate with the use of Memantine are headaches, seeming nauseous (I say this carefully as autistic kids can not verbalize exactly what ill feelings they are having), tiredness and much more stim behaviors. We have taken to advil, dramamine and Son Rise Therapy to help lessen the severity of these things and are hoping to see less frequency in the future.

Clinical Research Study

I am thrilled to release that our 11 year old has been accepted into the preliminary part of a clinical research study at Children's National Hospital, in Washington D.C. The primary focus of this study is to test a medicine currently undergoing FDA trial for approval. Similar to Namenda, a medicine already on the market for Autism, this drug is also used for Alzheimer's and is suspected to increase the cognitive connections.

DAY 1

We were introduced to a team of doctors working on this trial together in the psychiatry ward at Children's including a child psychiatrist and psychologist. Each department preformed a vigorous set of tests each lasting nearly an hour.

The general testing was to understand the current state of his physical body; blood-work, EKG, weight, height, urine samples etc.

Secondary testing was a series of questions utilized as an observation of his IQ, preformed by a senior psychiatrist.

Final testing was simple observation of behavior under certain activities by another doctor.

Conclusively; many words could describe what it is like to undergo these procedures with a severely autistic child. Endearing is my choice for day 1 as we subjected him to many trying settings and everything he gave us was positive, with good intent and love. How proud we are to watch him grow and how equally blessed to experience the possibility of this growth along side him.

Namenda

Exactly one week ago our 13 year old Autistic girl started Namenda for the first time. I am pleased to report that her cognitive connection seems to show signs of improvement already! With increased sociability, profound remarks and extremely advanced communication!

She is not allowed to watch a certain show on Cartoon Network. There was a commercial that came on and she yelled "Hey Ally", and when I looked at her she was looking right at me and then she stuck her tongue out at me! Fully aware that she was teasing me because she knew she was not allowed to watch the show! Perfect eye contact!

We are very intrigued with this medication and are crossing our fingers for further improvement!

GAPS/Brain Food Chicken Nuggets

Heat oven to 350F
Spray cookie sheet with organic, cold pressed, olive oil

You will need:

2 Chicken breasts
1 cup almond flour
1 tbs Bosari Original * (can use less depending on desired salt level)
1/2 tsp ground black pepper
1/2 tsp minced, dried onions
2 shakes of garlic powder, chili powder and paprika
2 eggs
1/2 tbs raw milk or raw milk kefir

In a bowl, mix all dry ingredients then dump onto a plate
In a separate bowl, mix eggs and raw milk

Cut chicken into 2x2 chunks
Dredge chicken in egg mixture, then place into dry mix, thoroughly coating all sides, place on cookie sheet

cook for 12 minutes, flip, then continue cooking for 12 more minutes.

*Bosari Original can be found at Whole Foods.
Note: ALL ingredients used are organic.