New to this blogging!

I have been asked to start a blog and or write a book by many families who have children with neurological problems. Mainly a lysosomal storage disease called MPS. (otherwise known as mucopolysaccharidoses) I have a son who was diagnosed with one of these disease in 2001. He has MPS IIIA or also called Sanfilippo Type A. Traditional medicine gave us no hope or cure for him. Average life expectancy I was told would be 10 -12 years old. He is now 12 years old and physically doing wonderful. Mentally he had regressed to that of about 2 years old. Fortunately due to vitamins, minerals and amino acids we have slowed the progression of the disease it seems. We have not seen any regression since June 2005. (that is a full 2 years now) We have actually seen cognitive awareness and improvement over what he had previously. You can read much more about MPS storage diseases at the National MPS Society's website. http://www.mpssociety.org

Parents with children with these diseases go through much more than most parents. Our children's regression has no rhyme or reason in timing of when things will regress. Some seem to get worse much earlier in life than others do. But one thing I have experienced, is that my childs metabolism is nothing like a normal person. His system does not break things down as easily as our body does and also metabolises other things much more quickly and not as efficiently. Therefore it has become very important to be aware of everything that goes into his body. We have made ourselves aware the food additives in processed foods, preservatives that can be toxic to a child like him, and also food sensitivities that he may have that seem okay for most kids. Sugars and dyes are of equal importance to stay away from also. Many of the children also have dairy and or wheat/gluten intolerances.

With these children it is very helpful to start a diary of everything they eat, and any reactions that happen daily. (even behavior reactions) Some foods can cause a reaction up to 48 hours later. Organic foods are a wonderful way to go if you can afford it. I find it is easier to start the changes gradually as you learn what choices to make in reference to your child.

We have learned to control behavior issues through vitamins and routine structure along with foods. We also have controlled sleep problems, and gastrointestinal problems. We also have controlled mild seizure activity through vitamin supplementation.

My goal here is to try and cover a topic each week. Give you links to the products that have worked for us, and why. At present our goal is to restore clear meaningful speech again. Our child lost all of his speech when he was 8 1/2 years old. We now have laughing and noises and ocassional complaining, LOL! Especially if he has wet diaper. He has never cared about that before in his entire life. Now he even gives us warning of BM's just prior to having one. So as long as we pay attention we can have BM's in the potty! This is an awareness he has never had before. I truly believe these are happening because of the measure of things we are doing to try to restore brain funtion and repair brain cells.

So if you have a topic of interest you would like to know more about in as far my experiences go, please leave me a note or question. I will give my experiences and what I did to help the situation. The more detailed your questions are the better I can help. Ex. Age of child, what type of diet, any meds they may be on currently, and of course present diagnosis. I am not a doctor, but the info. I have learned and used has helped many families thus far. I also recommend that any info I give be discussed with your childs doctor as well.

Here is picture of my 12 year son. When he was 6 years old, I was told he would not be with us by this age! I hope to hear from some you soon, and please feel free to share this blog with anyone who may benefit from it!