Re: Another Aussie family!

[Guest guest]

Another Aussie family dealing with mito. It is good to find some others a bit closer to home!

Just thought I would drop you a copy of our sons (diagnosed complex IV) progressive overview (Word document). Trust you find this of interest.

Regards,

& Savage.

AN OVERVIEW OF ADRIAN SAVAGE’S PROGRESS. (FEB 2001)

WAS: From birth D.O.B. 19/9/95, (and possibly in the womb, as commented numerous times about the strange repetitive movements, late in the pregnancy) had serve uncontrollable myoclonic epilepsy – up to 40+ seizures per day of ½ to 3 min duration.

NOW: is now drug free (no anti-convulsants since June 1998), with the occasional mild seizure (many so mild, that the casual observer is often not aware he is having one - mouth pouting, slight rolling of the eyes, involuntary swallowing or smiling, slight flicking of the head, shoulder or one hand - an average of 4 to 5 per week), which don’t leave him bombed out afterwards, and he is obviously aware of what is happening around him during them. At no stage when was on any combination of anti-convulsant medications, did he have any better control of seizure activity, as compared to their control since taking him off drugs, (both in terms of number of seizures over any given time frame and the intensity of those seizures) with the added noticeable benefit of no side affects. (Esp. more alert and aware of his surroundings)

BENEFITS: *The intensive rehabilitation program we did for 14 months through the Institutes for the Development of Human Potential (Glenn Doman program – Australian contact, Max Britt P.O Box 3 Healesville, , 3777 - Ph 059 623084) – especially the “masking” – rebreathing expelled air for set time, many times a day. (Check out www.iahp.org & www.nacd.org.)

*D.M.G. – dimethyl glycine supplement – the active component of pan agamic acid (vitamin B15)

*Taurine amino acid supplement

*Diet – particularly no salt, no sugar and regulated fluid intake

WAS: For the first 3-4 months of his life, was fed through a naos-gastric tube. To avoid infections from food getting on his lungs, all fluids had to be thickened, due to his poor swallowing. He was never able to successfully breast feed, because he could not open his mouth properly. He struggled with a constant “rattling” in the back of his throat, due to the inability to deal with his secretions, which required sucking out with a machine.

NOW: has been drinking unthickened fluids, for over 2 years (still from a bottle, working on cup use), and eats lumpy mashed food, making some attempt to bite or chew, with encouragement. The “rattle”/secretion problem has completely dried up.

BENEFITS: *getting him off anti-convulsants

*D.M.G. (as above) – noticed dramatic improvement in 3-4 days when we first put him on it.

WAS: Floppy “rag doll” lying “frog legged” on the floor, unable to lift his head up (until 15 months) or roll, and often only wakeful 2 to 4 hours a day.

NOW: Greatly improved muscle tone and weight bearing ability. (We still notice fluctuations during a day and from day to day, although they are mild compared to pre supplementation with D.M.G., and despite any fluctuations, he is always steadily improving in overall strength, especially in the upper body) He can roll from back to front and front to back (often gets arms stuck), and when very active, often moves around the floor on his back. He weight bears well on his legs, and is able to stand for extended periods of time with limited support for balance. He will step out and with encouragement and some assistance, walk across a room, on good days. He will involve and sometimes initiate meaningful interaction and games with others. He can reach and hit things, but not reach and grasp; although he will tightly grasp something placed in his hand. If placed on the floor in a seated position, he is able to remain upright for extended periods, by supporting himself with his hands on the floor in front of his body, between his legs. He now independently moves around the floor, in this way, pushing any pillows placed around him for protection, out of the way. For this reason, we have brought him a football foam protection helmet, to avoid injury. When seated, he often plays a game of leaning right back and pulling himself upright at the last minute, before he falls backwards. Sits on a little stool for extended periods of time, often with out support.

BENEFITS: *D.M.G. supplement

*Co Enzyme Q10 and activated Vitamin B3 supplements – was on these before discovering D.M.G. While not as effective, they did assist with his energy levels.

*Diet – high fat / low carbohydrate / low acid forming (i.e. Alkaline forming foods) / all raw vegan diet and freshly juiced vegetable juices for fluids.

*The intensive rehabilitation program definitely laid a good foundation to this progress.

WAS: Struggled with chronic constipation, with bleeding, often requiring suppositories.

NOW: Has very few digestive problems.

BENEFITS: Change of diet.

# Aside from secondary illnesses, the removal of the D.M.G. supplementation and a major set back after his 18 month immunization, (when he lost 3 to 4 clear words of speech, which he has never regained – the beginnings of word forming and a greater vocal range has been a recent progression) has always been steadily improving, especially since coming off anti-convulsants.

AN OVERVIEW OF ADRIAN’S DIET & SUPPLEMENTS.

Diet: *Fruit – bananas, avocados, pears, apples, kiwi fruit, peaches, mangoes, paw paws, strawberries, nectarines, apricots, plums, custard apple, rock melon, water melon

* “Nut Butter” – the following soaked overnight in water in the fridge and crushed: almonds, lima beans, dates, sunflower seeds, pumpkin seeds (pepita), sultans, raisins, figs, dried apricots, and prunes.

*Tofu, tahini (crushed sesame seed paste)

(On the few occasions we have given him cooked animal based products - eg egg custard – we have noticed a return of the “rattles” in the back of the throat and a swelling up of the old sty scares on his eyelids. had very bad sties on his eyes when younger, until we introduced this diet.)

Fluids: Mainly fresh, raw, vegetable juices, esp. carrot with small amounts of celery, cucumber, beetroot, parsley, or spinach. (Occasionally, 100% bottled fruit juice, watered down)

Supplements: *Barley green or alfalfa powder – heaped teaspoon per day (broad range alkalising nutrient) (Check out http://hacres.com on the Net)

*Selenium yeast powder – 1/3 teaspoon per day (broad range nutrient & anti oxidant)

*Grain based acidophilus/bifidus concentrate powder – ½ teaspoon per day

*Calcium Ascorbate – 1/4 teaspoon per day (non acid vitamin C anti oxidant)

*Calcium supplement – equivalent to 300mg per day (assist bone density)

*Vitamin B12 – 250mcg per day (because of vegan diet)

*Linseed/flaxseed oil – approx 5 ml per day (essential fatty acids esp. omega 3)

*Taurine amino acid – 500 to 750 mg per day (assists with epilepsy and aids liver detox)

*D.M.G. (N, N, -Dimethylglycins HCL 50 mgm/ml) – 5 to 7 ml per day. Of all the supplements we have ever used with , this is the one that has shown the most obvious, sustained, benefits. The first time we put him on it, with in 3 to 4 days, we saw a marked improvement in his epilepsy, energy levels, alertness, and a complete “drying up” of the rattling at the back of the throat. We did a trial of taking him off it, and with in 10 days, noticed a return or marked increase in all these things, even reverting back to not opening his mouth to feed, as was the case in his early months of life. (Check out www.kirkmanlabs.com on the Net)

Trust you find this of interest. There is much more we could share, concerning why we do what we are doing. Not sure about the “science” of it all, however the positive results are a testimony to the fact that any progression of the condition, is gradually being reversed. Though still a profoundly disabled boy, has good quality of life, and really loves his life. Though the journey for us has been an extremely difficult one, is a joy to be around, and we thank God for the blessing he has been to our lives.

Ketogenic diet??Anybody tried the keto diet for seizure control? Where did you go to implement?Succeses?Problems?Can you tell we're getting desparate??Thanks,Hope__________________________________________________