Still Searching for an Answer
L.R., Livermore, CA
 
While pregnant with my second son I took a drug called Benedictine for morning sickness. It was taken off the market while I was taking it, because they found out it caused birth defects. They were also spraying malathion for bug control in my area. I was very concerned, but my doctor assured me everything was fine.
 
But things were not OK for my precious baby boy, Joseph. He became handicap, in a wheelchair, and had uncontrolled seizures. No matter how much med's they gave him it did not control the seizures. At high doses he would become zombie like so we got him on a low dose so he wasn't so incoherent. His seizures continued and they were frequent.

At 8 years old someone suggested that maybe he had so many seizures because of what he ate. I changed his diet by taking away the most common allergenic foods( i.e. milk, eggs, corn, wheat etc.) I couldn't believe the change it made. His seizures were lessened, he ate better and was much more alert! The doctors were not supportive of my findings and as a matter of fact I was ridiculed at one point, because no one had heard of foods causing seizures. (I later realized that the foods I eliminated were high protein foods) It didn't matter to me what the doctors thought because I knew I was helping my son and the foods made a difference. I found other things effected him too, like artificial dyes and colors.

Fast forward to 20 years of age. I met not one but two nutritionist through my bible study who told me from what I described it sounded like a metabolic problem. I asked his pediatrician if there were any tests for metabolic and there was. The tests revealed high ammonia which is a sign of these diseases. Metabolic disorders are when you are missing enzymes. Foods cannot process through your body properly, thus it turns to ammonia which is toxic (poison) and goes to places it shouldn't in your body.

High protein foods are dangerous in some of the disorders. The toxins can go RIGHT TO THE BRAIN, which was why he had seizures. It can also affect muscles, and everything in the body. Others cannot have high fat foods. But, which disorder did my son have? The search started and even though there were several tests results that showed metabolic, no definite answer was found. For six years I did my own research and tried to work with doctors, but no answer was found and my son passed away. 

Its been 2 years since his passing. I am now just emerging out of mourning (although that will never go away) and feel that I went through MAJOR trauma. (Yes, I feel like a war veteran with nightmares and a pit of the stomach sick feeling that none of this really happened.) I am back on the path of trying to figure out what happened to my very complex son. I just got the autopsy results and need to find a doctor to decipher what it says.

I pray that I will get peace of mind by finding out what my son had. I think it will take a miracle to happen, but I believe it WILL happen.

If, as a parent of a very sick child, I could say anything to the doctors it would be; 
 
1. PLEASE, listen to the parents of sick children. I truly believe that moms (and dads) instincts carry a lot of weight. They are the ones with the child 24 hours and are 100% interested in finding out what is wrong. They will spend a lot of time trying to find answers.

2. Don't disregard ANY test that comes out positive. Even if that test alone doesn't mean anything, check and see if it means something in combination with other symptoms. Then take the time to put together the pieces of the puzzle. If you don't have the time, refer to someone who does!

3. Don't take your frustrations of not knowing what it is on the parents (or family). We are going through enough dealing with a sick child.

What I hope to get out of this experience is to help others in similar situations. I hope I can make their journey less traumatic than mine was. I also hope someday I can help the medical community figure out complex cases like my sons.

Only time will tell and only time will heal.
 
Louise R.
Mom to Joey
Angel in Heaven
3-24-81 ----- 4-12-08