The following are "natural" medicines that one family used for their son named Conner. Please read below and always consult your own Dr prior to using any of these medications just to be sure there is no interactions between other medications your child may already be taking.
After receiving our diagnosis of Sandhoff Disease, we did lots of reading and research on natural medicines and with the help of a natural medicine Dr., we started our son on various products. Please remember that we chose to use these things on our own and they were not given to us by a medical Dr. You need to talk to a natural medicine doctor to ensure that your child's current medicine will not interact with these natural supplements. We never had any trouble but you need to make sure first just in case.
Here they are along with a brief description of what they are for and the dosages.
Liquid Health Children's Multiple Vitamin: this is a liquid vitamin and mineral supplement, is also contains enzymes and other valuable ingredients for maintained health.
Dosage is listed on the bottle.
Liquid Health Jr, Attention Formula: this is a liquid mixture of natural meds and is used strictly for brain enhancement and function. We had lots of success with this product early into the progression of the disease. Dosage is listed on the bottle.
Taurine: Taurine is used to help control seizures. From 18 months to 2 years the dosage was (1) 500mg a day - 1/2 in the am and 1/2 in the pm. The liquid health jr also contains
some taurine. The easiest way we found for Conner to take this along with other "capsule" products - was to open the capsule and pore it directly onto his food, along with the others and mixed into something tasty and tried to get it down in a couple of bites. You can increase the amount of Taurine at age 2 1/2 to (2) 500mgs a day. This has also been known to help with the heart and circulation. If your child is on a feeding tube already, to get powder supplements down it is somewhat difficult, please try to get a liquid version of these products or mix the capsules one by one in some sprite and blend in a blender. Then use a
syringe to plunge the mixture down the tube.
"Liver": This is a product made directly from the Medicine Mans Corner which was our natural Dr. Please contact me for the information to get ahold of this business. This product has the ingredients that cleanse, strengthen and maintain liver function. We had great results from this one, liver enzyme counts were done several times on Conner throughout the progression of his disease, and were always found to be normal. Certain seizure medications and the disease itself can cause the liver enzymes to rise. Maintaining or trying to maintain healthy liver function is vital to health of the body. The dosage we used for (1) a day, 1/2 in the am and 1/2 in the pm. We increased to (2) a day at age 2 1/2.
Primal Defense: This is for the immune system and is a pro biotic, meaning that it contains ingredients that put the "good" bacteria back into your system. The "good" bacteria helps to fight the "bad" bacteria that causes sickness and or colds and flu's. I used this product during the cold and flu seasons. We had good success with this because our son was not ever really "sick". The dosage for this is one to two pills a day - crushed with a pill crusher and
sprinkled on food.
Pycnogenal:
brand vitaline
We used the vitaline of this one, this product contains quercetin which is a natural anti histamine and can treat or prevent asthma or bronchial irritations. It contains grape seed which is for circulation and heart function. Also contains milk thistle which cleanses the liver. Along
with a couple other things this product is a good mixture of very helpful ingredients.
Lean for Life: This is another one that came directly from the Medicine Mans Corner. It contains multi ingredients that are for full body health. It is for the eyes, heart, liver, lungs, kidneys, brain and circulation. It is a liquid and can be added directly to a bottle or a tube feeding. Dosage was 1 1/2 teaspoons once a day until the age 2 1/2 then it was increased to 1 1/2 teaspoons twice a day.
Polycosonal: This product helps to clean out fats stored in the body, which occur from the disease. Please contact your natural medicine Dr for dosages because age and weight need to be taken into consideration.
N Acetyl Cysteine SOD: There is currently research studies being done on these products. The combination of both need to be used however they come separately. They are
testing these products to give children longer lives and increased health of the heart and liver. Please search this info on the Internet or call your natural Dr.
Perfect Food Formula: This product is full of all the vegetables you can think of and is basically for nutrition. It comes in a powder form and can be very difficult to get down. I would say not to try to get this down a tube. Use this when the children are still able to eat and put it in something very tasty. You can give as much or as little of this product you want a day.
MLO Vegetable Powder: This is a protein supplement. Mix with food or juice and blend completely. This adds 24 grams of protein a day to your child's diet. It is especially good for them when the diet is getting hard to maintain.
Asparagus supplements can be used to relieve swelling issues, to lessen water retention some. Boiled Celery is also helpful.
Respiracton is a good product for congestion, and upper respiratory infections.
please email me at anytime for more information ---
we are looking into more natural medicines that have been showed to help with neurological
disorders and will update often.