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Dr. Gwenn Mito Minutes #2

Sickness and Your Kids: Knowing When to Change the Game Plan

Sickness: An Unavoidable Right of Passage

Kids get sick, each and every one of 'em. Sickness is not only a right of passage to overall growth and development, but essential to our immune systems ability to keep us healthy.

You can expect 6-12 illnesses on average a year for all kids. For kids with normal mitochondria and immune systems, most of these illnesses are short-lived and self-resolving. For kids with mitochondrial disorders, however, the situation is a bit more complicated because while they get the same illnesses as other kids their age, the impact of those illnesses on their bodies is much more intense.

Defense is the best offense. This is true when coaching a football game or with helping your mito child through an illness. The better you know your opponent, the more strategic and concrete your game plan, the more the odds will work for you and not against you. If nothing else, you'll be prepared and organized and feel in control of whatever comes your way.

Combating Sickness: Stick to Your Game Plan

Energy balance is the always the goal when managing mitochondrial disorders. This becomes tricky with sickness because sickness is a huge energy depleter - for all of us in fact.

When you are sick, your body's metabolism is on overdrive. Your immune system mobilizes its troops to battle the offending germs. As a result, your body consumes its energy resources to keep the troops moving as well as the infrastructure intact. To rebuild your energy, you need to not only conserve it with rest and sleep but boost your power with fluids, nutrition and fever control. If you have normal mitochondria, this process is fairly easy to accomplish. However, people with mitochondrial disorders can't keep pace as easily. So, energy has to be conserved and boosted even more, and may even require some assistance.

Football teams all have a standard way they prepare for games. The have a standards set of plays they call into action depending on their anticipated needs for that game. How do they identify those needs? By studying their opponent, inside and out. Once they do that, they can take steps to maximize their strengths and minimize their weaknesses.

Theresa Couture, who has two children with mitochondrial disorders, has found that the best defense is a good offense. "Begin with the end in mind" she told me recently. She applies this from everything in her kids' lives from figuring out how to help them achieve a personal goal to tackling the complex medical issues that arise.

Theresa discovered she was able to anticipate her kids need better in sickness and health by being organized and having a go-to plan for when her kids' bodies start to show signs of not keeping up with the energy demands.

Theresa advises these steps when a child with mitochondrial disorder is sick:

Expect that your child will get sick. If you are prepared for this it will not seem so overwhelming when it happens. Plan that your child will need to see the pediatrician and possibly go to the emergency room or hospital for admission.
Take a deep breath. This is for you and your child! Anxiety is an energy drainer so keeping your anxiety and your child's anxiety under control will help eliminate this variable. At the same time, kids with mitochondrial disorders tend to have rapid and shallow breathing so taking slow deep breaths helps minimize the added energy drain.
Monitor your child more with a written list. Each child will have systems that seem to act up when sick. Following these systems in health and sickness will help you identify early when a problem is developing. When creating your list,
Think head to toe
Include the systems that tend to act up for your child. The ones that most kids battle include Gastrointestinal system, temperature control, a child's overall behavior, blood pressure, respiratory rate. Knowing your child's normal will help you catch the abnormal quicker

Use the "5 Big Baseline Features" mentioned in MitoMinutes #1:

Skin color;
Basic Vital Signs (heart rate, respiratory rate and pattern, blood pressure and temperature);
Overall Energy and Alertness;
Gastrointestinal Function;
Behavior and Appearance.

Have a notebook with a summary of your child's medical history, medications, allergies, contact numbers of doctors. You don't necessarily need to have the entire medical history with you but a snapshot including emergency protocols.

Call your pediatrician and arrange an appointment. Your pediatrician is the best person to help you assess if treatment beyond what you are doing is needed such as antibiotics and intravenous fluids.

Have your pediatrician call your Mito doctor for further advice once your child is seen. Doctor to doctor will help your child more than if you attempt to be the middle person.
"Be a good reporter of information to your doctor", advises Theresa. "The better the report, the better the response."

When reporting medical information, be specific and objective. Some details to include are:

When did the illness start?
What are the symptoms?
What's the intensity of the symptoms (use a scale 1-5)?
How much has the child had to eat or drink? Don't just give broad statements - actually list the foods, liquids and amounts.
What have you done so far (Motrin, Tylenol, fluids)?
Any behavioral changes such as lying down more, more fussy, not playing as usual?
Any changes from baseline the Five Big Baseline Features.
Is anyone else sick at home?

Don't have your sickness plan slow you down when your child is well. When well, focus on wellness and do things as a family.

Have a support system that you can call in an urgent situation for childcare, etc.

Carpe Diem: Your Best Move Between Plays

Your child will have exacerbations and battles with illness but those should not be the focus of your life or your child's. When in doubt, take a deep breath and revisit your game plan. And, put the episode behind you. The more positive you live the life between exacerbations the less impact each one will have on your child's overall health and well being. Positive thinking will yield positive results and that is always an energy boost!

Gwenn Schurgin O'Keeffe, MD
About Dr. Gwenn
Gwenn Schurgin O'Keeffe, MD

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Comments

lilysmom's picture

lilysmom

02/02/2009

I am so glad to have found this about behaviours.Lily has been having screaming issues, alot more sensory issues, and very odd things like collapsing at my feet at church and hiding her face.She had been getting sick and then well this is now going on over a week...