Sara was interviewed by Washington DC's Channel 9 News regarding the clinical research study! Here is a link to the interview:
USA9 News Interview
USA9 News Interview
Thursday, January 31, 2013
Wednesday, January 30, 2013
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
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
Saturday, January 26, 2013
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
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)
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)
Tuesday, January 8, 2013
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.
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.
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