Symptoms of this catastrophic disease can be misdiagnosed by your doctor and frequently are. At the onset, you might see muscle weakness, cramping, and/or twitching. Most people, especially kids, start out with the ALS in the limbs. They will seem to fall or stumble more often than they usually do. Speech becomes incoherent or slurred. They will have trouble eating due to the tongue losing its mobility which will lead to difficulty swallowing. The upper respiratory airway must be protected in these cases.
Most kids experience the following symptoms that usually lead to a diagnosis of Lou Gehrig's Disease or ALS. These include difficulty with movement, difficulty swallowing, and difficulty talking. They have both upper and lower damage to the motor neurons so that they cannot move much at all. Depression can hit them hard and you need to watch out for the symptoms of that as well. If you can find someone for them to talk to, or even join a support group for yourself and the child, that would be beneficial to both of you. Lou Gehrig's Disease is hard to handle by yourself and you may need extra support along the way.
There are some treatments out there that are still be tested. The use of the drug, Riluzole, is being tried to reduce neuron damage. It does not reverse the damage but simply helps in slowing it down somewhat. The best treatment is using every resource in the medical community at your disposal. Talk to your doctors, nurses, nutritionists, pharmacists, and home health care workers. See if they can suggest another way of coping or even treating your child.
After along time, the child may need to be placed on a respirator. They will place a tube down the child's throat to help them breathe. The doctor will usually keep the child in twilight sleep for this so they will not fight the tube. If the child becomes dependent on the ventilator, they may have to perform a tracheotomy. They cut a small hole in the throat and the trachea and place a tube to which they can hook the child up to the ventilator and help him breathe. Some of these patients can even learn o talk again with the trach in place.
The sad statistics are that most that suffer with respiratory types of infections wit Lou Gehrig's die within three to six years from onset. The good news is that a few last ten years or more. So there is still hope. There are several associations in the world that can also help in your understanding. In the United States, there is ALS research facility at Johns Hopkins Hospital. In Australia, you will find the Motor Neurone Disease Association of Australia. They have the ALS Society of Canada. There are many fund raising walks held annually to raise money for awareness of the disease. The ALS Therapy Development Institute keeps working on finding a cure of some type of treatment for kids with Lou Gehrig's Disease.