How can I get renewed medical attention for my child's undiagnosed sickness?

Question

My son is 6 1/2 years old and we are in the process of seeing an Infectious Disease specialist and a Neurologist. My son has had an MRI, a CAT Scan, Ultrasounds, and the pediatricians have run every blood test imaginable - all showing nothing.

He goes through spells of prolonged sleeping at a time; he just can't stay awake. He also has about a good week when his activity level and sleep patterns are normal; however, there are times when I can't get him to wake up. He falls asleep as soon as he gets in the car from school, sleeps 3-4 hours, gets up and eats and goes to bed early in the evening. This has been going on for two months and is scary and very frustrating.

He is missing school every third day or so and sleeps all day. He has headaches and very bed sweating when he sleeps. Because the Doctors can't find anything wrong they are dismissing me and throwing their hands up. I know there is something wrong with my child! This is not normal for any child, let alone my normally very active 6 year old little boy. He was also hospitalized for three days, and they saw him do all this.

Has anyone else experienced anything similar where you know there is something going on and the Doctors just won't listen?

Answer 1

Seek alternate specialists

If you've lost confidence in your health care professionals, or if they've dismissed you despite clear signs of a health issue, I'd advise you to seek another health care professional. Get a second, third, or a fourth opinion. There is little else you can do - if a doctor has ran every test, done everything he believes he can to diagnose the symptoms - and cannot, there is nothing more he can do.

Answer 2

In addition to the all ready fabulous suggestions given above, I just wanted to add this:

Whatever tests are run, scans are taken, etc., make sure you get copies for yourself and keep them in an organized place (like a notebook), and anytime you visit a new doctor (or even an old one), take them with you. Shuffling information and data between doctors offices takes time and can be incomplete. When my dad was so sick, my mom kept her own calendar of the drugs he was taking, how long he was on them, how many times per day he took the medicine or had a treatment, etc., and there were many, many times that my dad's oncologist told my mom that her calendar is what kept my dad alive because his treatment was just simply so complex.

I would also keep a record of his symptoms--even though he's been hospitalized and doctors have observed his behavior, keeping a running diary that you can take with you will only help you long-term and might provide some more insight into whatever is making him sick.

Answer 3

I definitely concur with getting a second or third opinion.

On the personal side, it sounds like a support group (beyond just Parenting at StackExchange) could be really beneficial. I would start with family and close friends for their support. But even with the best of intentions, they may not understand what you are going through. Most communities have support groups of all kinds for parents, children, and/or sufferers of specific illnesses or classes of illnesses. You could ask your doctors or local hospitals, or do a web search or check Meetups for your region.

On the medical side, have you considered visiting a DO (osteopath) or other professional dedicated to a more systems-oriented view of health? I would also recommend doing your own research if you have not already, and asking targeted questions of your doctors (existing new) such as: "what specific illness can cause these symptoms?" I have no interest in causing alarm, but it sounds like ruling out CFIDS/CFS/ME or KLS might be helpful (you may know of much more likely candidate illnesses). You can always visit a trusted website like the Mayo Clinic and search for specific criteria -- not to replace medical advice but to brainstorm questions to ask. If you can get a doctor to explain why he/she rules out a specific illness, you have something concrete you can work with or take to another doctor ("do you agree my child does not have XYZ?").

For what it's worth, we got a 2nd opinion with our baby when one doctor's bedside manner was inadequate for our needs, even though her treatment was pretty good. Now baby and parents are all happier.

Best wishes.