When Jude was first diagnosed, we really didn't know how to take care of his needs. These comments are just based on my opinion and research. You should ask your doctor or pharmacist about anything you do regarding your child's meds, diet, or activities. This information simply states what we have done and are doing. You need to ask your mito doctor what's best for your situation because every mito child is different.

1. Request an insurance case manager-they are available to employees and their families. They assist with medical necessities and purchases, and make approvals on a case-by-case basis.

2. Learn about the cocktail. We requested our vitamin cocktail in liquid form because Jude has a feeding tube. We get our LiQsorb CoQ10 at a mitochondrial disease discount through epic4health.com. A generic Levocarnitine liquid for prescription Carnitor is also available through our pharmacy. I have been told by more than one expert that over-the-counter products are very unreliable. Components of the cocktail vary from child to child.

3. Visit the United Mitochondrial Disease Foundation's website, Mitochondrial Disease Action Committee, or the Muscular Dystrophy Association's website for information, fundraising opportunities, and research. We are members of UMDF because we support their mission for research.

4. Call your local police and fire departments. Give them your information so they can do a "location" on your child. In case of a 911 call, all of your information (and the child's information) will pop up on their screen because you will basically be pre-registered. Provide specific directions and alternate phone numbers.

5. Investigate therapies. If your child is under 3 and qualifies, therapies and hearing screenings are available through state-provided Early Intervention. You can even register for CPR if your child is a recipient of Early Intervention or First Steps services. Communicate with your school system's district office to learn about therapies provided to special needs children over age 3. Swimming has done wonders for our little one.

6. Make note cards. Explain with an "information guide" on a 3x5" index card (or piece of paper) including emergency contact phone numbers, physician's phone number, and instructions for care. We made copies and laminated them. Keep one in your backpack or diaper bag (you can attach it by using a hole punch and chain or string).

7. Get follow-ups. A mitochondrial disease diagnosis might be accompanied by other physical and mental problems. At least three organ systems are usually involved, so medical follow-ups are usually necessary.

8. Avoid physiologic stress. Doing such could cause an "energy crisis." Some kids qualify for cooling supplies. Ask your doctor and case manager about a cooling vests and cooling bands. Extremely hot or cold temperatures, fasting, and dehydration should be avoided.

9. Be aware that certain medicines cause side-effects and potential damage. We provide a copy of the diagnosis report and a list of all medicines that Jude takes so all of his doctors are aware of his situation. Read more about the drugs to avoid on UMDF's website.

10. Consider joining a support group. If you visit yahoo.com, you can learn more about joining health groups such as the Mito group. Check out local churches for special needs programs. ASK your doctor about local support groups.

11. Help by educating and fundraising. Currently there is no cure and little awareness for mitochondrial disease. Instead of being frustrated, be persistent and informative.