"Ataxia describes a lack of muscle control during voluntary movements, such as walking or picking up objects. A sign of an underlying condition, ataxia can affect movement, speech, eye movement and swallowing. Persistent ataxia usually results from damage to your cerebellum — the part of your brain that controls muscle coordination. Many conditions can cause ataxia, including alcohol abuse, stroke, tumor, cerebral palsy and multiple sclerosis. An inherited defective gene also can cause ataxia."
Ataxia de Friedreich - "Friedreich’s ataxia is caused by a defect
(mutation) in a gene labeled FXN. The disorder is recessive, meaning it
occurs only in someone who inherits 2 defective copies of the gene, 1
from each parent. Although rare, Friedreich’s ataxia is the most common
form of hereditary ataxia, affecting about 1 in every 50,000 people in
the United States. Both male and female children can inherit the
In 1996, an international research team identified the Friedreich’s ataxia gene on chromosome 9. The FXN gene codes for production of a protein called 'frataxin.' In the normal version of the gene, a sequence of DNA (labeled 'GAA') is repeated between 7 and 22 times. In the defective FXN gene, the repeat occurs over and over again—100's, even up to 1,000 times.
This abnormal pattern, called a triplet repeat expansion, has been implicated as the cause of several dominantly inherited diseases, but Friedreich's ataxia is the only known recessive genetic disorder caused by the problem. Almost all people with Friedreich's ataxia have 2 copies of this mutant form of FXN, but it is not found in all cases of the disease. About 2% of affected individuals have other defects in the FXN gene that are responsible for causing the disease.
The triplet repeat expansion greatly disrupts the normal production of frataxin. Frataxin is found in the energy-producing parts of the cell called mitochondria. Research suggests that without a normal level of frataxin, certain cells in the body (especially peripheral nerve, spinal cord, brain and heart muscle cells) cannot effectively produce energy and have been hypothesized to have a buildup of toxic byproducts leading to what is called 'oxidative stress.' It also may lead to increased levels of iron in the mitochondria. When the excess iron reacts with oxygen, free radicals can be produced. Although free radicals are essential molecules in the body's metabolism, they can also destroy cells and harm the body. Research continues on this subject (see section on 'What research is being done?'). "
Motor Behaviors -
1.Tone is hypertonic or hypotonic - 2.Posture: arms salute, sitting on air, toe or finger splay, fisting, high arm position -
3.Movements: squirm, jerky, gape face, tongue extension, arching -
Disorganized State Behaviors -
1.Hypo-alert, hyper-alert, gaze averting, uncontrollable fussing and crying, upward gaze, staring, grimace
|Finger splaying (holding fingers spread wide apart) - http://www.pediatrics.emory.edu/divisions/neonatology/dpc/nicubeh.html|
|Adams, Rex Miracle Medicine Foods Parker Publishing - Adams shares testimony of Tommy whose cerebral palsy symptoms reversed after taking wheat germ oil with other proteins, vitamins and minerals. (Best to take certified organic.)|
Avoid Arginine -
High Arginine Foods to avoid - http://nutritiondata.self.com/foods-012089000000000000000-w.html?maxCount=73
|Creatine - http://mommyklor.blogspot.com/2009_12_01_archive.html - "Why would lack of creatine cause a problem? Creatine is important in providing energy to the brain as well as muscle and other tissues. Lack of creatine in the brain causes a range of neurological symptoms including developmental delay, lack of speech, seizures, movement disorder, mental retardation and autism. Patients with GAMT deficiency also have high levels of GAA, which is thought to be toxic to the nervous system, making the symptoms more severe. GAMT deficiency was not discovered until 1994 and since then about 40 patients worldwide, only a few of them in the USA."|
Folate + 700 mg/day magnesium (taken at bedtime) for women
at full term may prevent toxemia, premature labor
and cerebral palsy (for beginners). 2/2/2008 http://www.askrph3.com/radio/radio.shtml Ask the Pharmacist radio WMA RM www.lenandjo.com
Klor, John son of
Klor Family web site - 7/13/2009 -- http://mommyklor.blogspot.com/2009_07_01_archive.html- Supplements and Food - Ornithine - 2.5 ml 6 times a day (this would be a lower dose, but the pharmacy had to dilute it) Creatine - 2 ml 6 times a day + Sodium Benzoate - 1 ml 3 times a day + John's Formula - made by Mead Johnson (makers of Enfamil)
92 g of WND 1 (Non-essential amino acid-free diet powder) + 55 g of PFD 1 (Protein - and amino acid-free diet powder). Mix this with (distilled spring) water and fill to make 32 oz John is at the stage right now where he is trying to make the transition from baby food to solid and this hasn't been easy since most of the time you would (per GAMT diet protocol) start with a lot of soft pastas. Right now the only really solid foods that I can feed him are (organic) bananas, cantaloupe, boiled zucchini, squash & carrots. Other than that he eats stage 2 & stage 3 fruits & vegetables.
Low Arginine Diet - Sam's initial (pre-kindergarten low-arginine)
"The nutritionist...gave me some basic information...to get us
officially started. Samantha can have 20 grams of protein per day
(that number will go up over the years as her weight goes up). I think
that if she cuts out all meat and dairy that we can do this without too
much difficulty (not that cutting out yogurt, milk, cheese, nuggets, etc
isn't difficult!). For example: a glass of cow's milk has 8 grams of
protein, but a glass of rice milk has 1 gram. So, having the right foods
on hand will be key. The food group with the lowest amount of protein is
fruit and luckily she loves fruit. The foods she can have with no limit
are 'pure fats and sugars' (yum yum!), straight sugar candy, kool aid,
popsicles, etc. I'm not sure what 'pure fats' are, but I think we'll
stick with sugars. (Goat's milk is more digestible than cow's.)
We will have to petition the insurance company to help pay for her creatine and ornithine, but I went ahead and placed a mail order call on our way home to get a kilo of both headed our way. She will be on both of these for the rest of her life and she will be watching her protein intake for the rest of her life. The severity of the diet in the long run will depend on her body and how she responds to the current guidelines. She may regulate to where she can have a higher amount of protein, but will probably never be able to eat totally 'carnivore' again. I hunted down a 'scientific grade' scale for measuring out her meds each day and am excited to get started in 2-3 days when the supplements arrive. We will be tracking her food for 3 days and shooting for about 30 grams of protein per day this week."
|Low Arginine Diet - http://teachingsamantha.blogspot.com/2009_03_01_archive.html - "20 grams of protein is a very small amount compared to what most people (even 5 year olds) eat, unless they are vegan and then it's very difficult to hit 20. So, based on the nutritionist's instructions we are now mixing in a little dairy to get up to the 20 mark a little easier. The tiniest little slice of cheese (measured to the tenth of a gram) is 4 grams of protein. A Kraft single is 3. So, we have found a happy medium for now. The inner science geek in me is still struggling with the knowledge that the arginine in animal sources is higher than, say rice, but I just can't shove enough low-arginine food into her to get her up to 20 grams. There is a medical grade 'food' which I believe is another powder to mix into a sugary/yummy drink that has a lot of protein, fat and calories but none of the protein is from arginine and the nutritionist is sending us samples to see if Samantha will take it. If she does, there will be less of a balancing act to avoid arginine, but consume enough protein. I secretly want to start a website and figure all this out, including meal plans, recipes, etc., so that the next family diagnosed with this will have a resource to start with. There is literally NO support group for this."|
http://teachingsamantha.blogspot.com/search?q=diet - Treatment is
mellow in the sense that it's totally safe. It involves oral
supplementation of creatine which has no side effects, but it
involves the most difficult diet I have ever heard of.
The diet is to eat nothing containing arganine. Arganine is an amino acid found in: Animal sources: dairy products (e.g. cottage cheese, ricotta, milk, yogurt, whey protein drinks), beef, pork (e.g. bacon, ham), poultry (e.g. chicken and turkey light meat), wild game (e.g. pheasant, quail), seafood (e.g. halibut, lobster, salmon, shrimp, snails, tuna in water)
Low Arginine Diet -
http://www.nutritionvalue.org/foods_by_Arginine_content.html - To avoid (or reduce)
following Vegetable sources:
wheat germ & flour, buckwheat, granola, oatmeal, nuts (coconut,
pecans, cashews, walnuts, almonds, Brazil nuts, hazelnuts, pine-nuts,
peanuts), seeds (pumpkin, sesame,
sunflower), chick peas, cooked
So, basically (eat) vegan + gluten & casein free (low-glycemic)."
Eat the majority of protein from: Fruit & Other Vegetables - with supplements as tolerated.
|Magnesium may prevent cerebral palsy in fetus - Winter 1998 www.pcrm.org|
|Hayes, Norvel What Causes Jesus to Work Miracles www.nhm.cc Chapter 4 Miracles Come Through Knowledge and Obedience "Mae Stafford...had suffered from cerebral palsy for more than 10 years...God picked her up out of that wheelchair and made her totally normal."|
|Hinn, Benny "On this broadcast, see the powerful testimony of a 19-year-old man who came to the service with cerebral palsy, yet left with a life-changing miracle." http://www.bennyhinn.org/media/2009-7-21.asx|
Hunter, Charles and Francis
Hunter's book How to Heal the Sick shares healing testimony pg 171-174 www.cfhuntr.org
Sid Roth interview http://www.sidroth.org/radio.htm LISTEN:
(Real Player) Mon Tue We Th Fri or (Media Player) Mon Tue We Th Fri or Download (mp3 file) Mon Tue We Th Fri
Monday audio relates Louisville, Kentucky, USA 4 year old Jessie Ciezerweiner's healing of CP. He had never walked.
Wednesday's testimony is of man who crawled up to alter for prayer & crawled back to seat. He was healed the next day.
Mellor, John -
https://sidroth.org/newsletter/march-2019-newsletter/ - Scotland -
Testimony of Hamish (born with CP,
one tight side and twisted limbs, so that he was disdabled unable to run). Hamish was healed and ran. "Jesus has already purchased divine healing by His sacrifice on the Corss. He has done the hard part. Our part is to...believe it and NOT doubt or overthink it...Faith is a choice to believe God, NOT a feeling."
|Paxton, Lisa http://www.awmi.net/extra/article/lisa_testimony "Lisa was born with plastic diaplegic of premature birth form of cerebral palsy. She was affected in her legs and in her eyes. She had double vision and couldn't focus with one eye. She could not walk until she was about 9 years old, when she began walking with the aid of braces and crutches. She also struggled with dyslexia, a learning disability. At 16, she was living with her family on a farm near Duluth, Minnesota. Her older sister came to visit and gave her a word from God. She told Lisa, 'Before I leave, you will receive Jesus as your Savior, be baptized in the Holy Spirit, and God will begin to heal your body'...At a family dinner after her brother's wedding, Lisa was sitting propped in a corner of the room. A couple came into the room, walked over to Lisa...The couple had been on a vacation in Canada, and God told them to go to Kansas and pray for Lisa. Although they didn't know her, the man saw her face in a vision. God had given the man specific instructions to fly to Wichita. There a man with a similar vision met him and drove him to the wedding dinner, where he found Lisa. He said that God sent him to lay hands on Lisa because God wanted to heal her. As he stood behind Lisa to pray, she began to feel heat, like hot oil, that started at her head and went throughout her body. Then the man grabbed her hand and said, 'Rise up in the name of Jesus.' When he said those words, Lisa was immediately in a standing position, and she began to take small steps. The pain was gone and she was walking... Lisa's healing is still in progress today. While working as a prayer minister, her left eye was healed. She now sees clearly and sees colors where she couldn't before. "|
Ring, David -
Ring, David - Hand and Wrist: Hand and Wrist - by Jesse B. Jupiter,
David C. Ring - 3,000 Exercises in Arithmetic + Key to 3,000 Exercises in Arithmetic ...
Directions = David Ring Ministries - Franklin, Tennessee, USA - http://www.davidring.org/
Victory In Jesus at www.youtube.com/watch?v=Z_04Ey704MY Home = www.davidring.org
David is high functioning CP adult. Media http://www.davidring.org/media.html
Ring, David - Just as I Am = autobiography book - David is a resurrection baby. He preaches, "You can't change the past, but you can change your attitude about the past." www.davidring.com
Ring, David - articles - http://www.davidring.org/blog & http://www.davidring.org/media.html
Ring, David - http://www.daystar.com/ondemand/joni-surrender-all-david-ring-and-kristie-lamb-j703/ 1/31/2013
Ring, David - Joni – Surrender All – David Ring and Kristie Lamb (J703) - 4/17/2014 wonderful autobiography -
Ring, David - http://www.amazon.com/The-Boy-Born-Dead-Friendship/dp/0801017300#reader_0801017300 CP
|Where's Julie Now? - http://www.brothermel.net/MCM%20Wheres%20Julie.pdf - Spiritual Mistakes when We Quit on God, Others or when We Ourselves Quit/Give-Up or when We Act without Spiritual Revelation or God's Timing!|
|Carr, Julie Lyles - http://www.lightsource.com/ministry/life-today/julie-lyles-carr-raising-an-original-557009-full.html Chapter #1 https://www.amazon.com/Raising-Original-Parenting-According-Temperament/dp/0310345898/ref=sr_1_1?ie=UTF8&qid=1457739653&sr=8-1&keywords=raising+an+original#reader_0310345898 + http://www.julielylescarr.com/p/hearing-loss.html - Maesy is hard of hearing and Merci experienced a stroke at birth and has left side hemiplegia/cerebral palsy.|
Conductive education from the principles of pedagogy in Bucharest is
helping preschoolers who have been given up on by the medical society.
www.sunnews.com/news/2003/part2/0925/susandean.htm + www.albertahearitagefoundationformedicalresearch.com
http://teachingsamantha.blogspot.com/ - 9/14/2010 -
"Push for more testings of all kinds- blood, urine, DNA, MRI with
spectroscopy. Don't let a pediatrician or developmental psychologist
look at your child only from the outside and slap
a give-up label on your child of 'delayed' without looking a level deeper for answers. If 1,000 children are tested and only
1 of them gets information that helps in their recovery, isn't it worth it? It's so intimidating to be a parent only armed with 'hunches', but even doctors (and MRI technicians) rely on hunches and you know your child better than any doctor."
Israeli mom's invention gets cerebral palsy
kids walking - 3/20/2014 -
"Rotem’s mother, musician Debby Elnatan, traveled
to Ireland ahead of the April 7 launch of her
under the new Firefly brand of Irish company Leckey, and has been
featured on ABC News, The Daily Mail, International
Business Times and other media...
The motivation was the advice of physiotherapists not to let little Rotem’s legs remain useless, but to 'walk' him regularly to strengthen them and increase his awareness of his limbs."
|UCP is a gateway resource to much help for cerebral palsy but also many other disabilities www.ucp.org|
|Dopamine - http://www.protectingpatientrights.com/blog/rare-disease-sometimes-mistaken-for-cerebral-palsy.cfm - Dopamine may be of great value.|
|http://www.dailymail.co.uk/health/article-2330338/Boy-cerebral-palsy-successfully-treated-using-stem-cells-taking-vegetative-state-walking-talking.html - Umbilical stem cell cure - 5/25/2013 "In March 2013, in a controlled study of 100 children, Korean doctors reported for the 1st time that they had successfully treated cerebral palsy with allogeneic cord blood....(German) Doctors claim to have successfully treated a child suffering with cerebral palsy with (umbilical cord) stem cells for the first time."|