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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?

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Where do you live? Sadly, the country you live (and, in turn, the health care system it has) will likely play into the options you have. In general, though, keep nagging your doctor to refer you to specialists. –  DA01 Apr 13 '12 at 15:30
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3 Answers 3

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.

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This. No doctor knows everything, and let's face it: there are some bad doctors out there. You need to be aggressive about finding different practices if the ones you are going to aren't getting results. –  Beofett Apr 12 '12 at 13:22
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At times like this you just wish Greg House wasn't fictitious :) –  Benjol Apr 12 '12 at 14:01
    
Absolutely! Multiple doctors at a major university hospital were unable to diagnose my father with leukemia and he was 35 and could articulate exactly what was wrong with him. If my mom hadn't been pushy and found a doctor who was dedicated to finding a correct diagnosis, the doctors at the university hospital would never have figured it out. –  Meg Coates Apr 13 '12 at 0:38
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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.

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+ Keep a diary of his symptoms! –  Swati Apr 13 '12 at 13:36
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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.

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One thing to consider: 2nd/3rd opinions should not stop until you have some kind of consensus. If you get that 4th opinion with a creative Dr that finds 'something', don't just sit on that diagnosis "i knew something was up." Take that diagnosis and bounce it off of a previous Dr and perhaps an additional Dr and see what they say. Last thing you need is a bad diagnosis that could make things worse. Do not fear a Dr getting pissy because you sought an additional opinion. No Dr worth their salt will begrudge you for that. –  monsto Apr 16 '12 at 18:39
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