medical issues - need ideas...

[fanaudical]

I got a call from a distraught friend this evening. He's at the hospital with his family and his daughter. She was a vibrant, athletic 12-year-old until a couple of months ago. She then started becoming listless and displaying something like chronic fatigue syndrome. This was intermittent until about two weeks ago, and then she began displaying less and less energy. Today she can barely walk six feet without being very tired.

Docs have ruled out everything they can think of (poisoning, infection, encyphilitis, mono, meningitis, parasites, etc). My friend is being told that this is depression, but he doesn't believe it.

Anybody have any "mystery illnesses" to consider here? I'm just looking for ideas to pass along. This girl is at one of the best hospitals in the Pacific NW and nobody likes that they are stumped.

Thanks for the help.

[Jim Bremner]

MS? but too young

[HHI944]

I'm no doc or shrink, but for it to be depression causing symptoms that severe, I'd think there would have been a catalyst event of proportions large enough the parents would have been aware.
Lyme disease?

[Rob Channell]

First, I am NOT a doctor. I did not even stay at a Holiday Inn last night. But I have seen the following happen.
They probably already checked for this but a Thyroid problem can cause a lack of energy. My eldest child had one and she lost a lot of coloring, had no energy, never felt like hanging out with the other kids, her joints ached. Now that we found out the problem and she is on medication she is a different person, more energy, looks healthier, more social, etc. Hers was a fairly severe case.

[Targa Me]

I know you said they checked for parasites, but I say check again.

[pwd72s]

Originally Posted by Jim Bremner

MS? but too young

My thought as well...but it doesn't show up this early..not usually, anyway. But Cindy can recall having minor symptoms in her mid teens, then dismissed as other things. Jim, does your wife have the same experience? Now remembering symptoms before diagnosis?

[89911]

I've had good luck on the off topic board for finding the answers to many question but trying to solve a mystery illness that demonstrates vague and general symptons that medical experts can't answer here is asking too much. Tell you friend to seek out the best help in your area and keep asking. Looking for answers here or on the internet is just going to create more unneeded confusion.

[ramonesfreak]

im no doctor but did they rule out cancer? did she have a chest x-ray? tested for heart related problems?

could she have been sexually abused and the parents dont know?

[fanaudical]

Thanks, all, for the responses. I'll pass those along.

89911 - Yes, I agree with you on this. I wouldn't be doing so except my friend asked for any ideas we might have (and I'm just extending our idea generation). They are working with some of the best help available in the area, but everybody is stumped.

[tharbert]

Maybe it's time to stump a different set of doctors? Go right for the best.

List

We have a somewhat limited choice of medical care in my area. Sure, there are hospitals around here but when it comes to life threatening illnesses, everyone heads to St. Louis. Fortunately, we have Barnes Jewish Hospital in STL, one of the best diagnostic centers in the states.

[LWJ]

Not a doc either. My Ex SIL had Chronic Fatigue. I am convinced it is a manifestation of depression. I don't think a 12 yr old would have that. I could be wrong.

I like some of the ideas above. If she is in Oregon, Vitamin D? Change up docs if they have run their course.

I have several experiences where doctors made critical errors.

BEST OF LUCK.

Larry

[Groesbeck Hurricane]

Narcolepsy is a sleep disorder that causes excessive sleepiness and frequent daytime sleep attacks.

Causes, incidence, and risk factors
Narcolepsy is a nervous system disorder. The exact cause is known.

In some patients, narcolepsy is linked to reduced amounts of a protein called hypocretin, which is made in the brain. What causes the brain to produce less of this protein is unclear.

There is a possibility that narcolepsy is an autoimmune disorder. An autoimmune disorder is when the body's immune system mistakenly attacks healthy tissue.

Narcolepsy tends to run in families. Certain genes are linked to narcolepsy.

Symptoms
Narcolepsy systems usually first occur during ages 15 to 30.

The most common symptoms are:

Periods of extreme drowsiness during the day. You may feel a strong urge to sleep, often followed by a short nap (sleep attack).

These periods last for about 15 minutes each, although they can be longer.

They may happen after eating, while driving, talking to someone, or during other situations.

Most often, you wake up feeling refreshed.


Dream-like hallucinations between sleep and wakefulness. They involve seeing or hearing, and possibly other senses.

Sleep paralysis. This is when you cannot move as you start falling asleep or when you first wake up. It may last up to 15 minutes.

Cataplexy. This is a sudden loss of muscle tone while awake that makes you unable to move. Strong emotions, such as laughter or anger, can trigger this.

Most attacks last for less than 30 seconds and can be missed.

Your head will suddenly fall forward, your jaw will become slack, and your knees will buckle.

In severe cases, a person may fall and stay paralyzed for as long as several minutes.


Signs and tests
The doctor will perform a physical exam and order blood work to rule out conditions that can cause similar symptoms. Conditions that can cause excessive sleepiness include:

Insomnia and other sleep disorders

Restless leg syndrome

Seizures

Sleep apnea

Other medical, psychiatric, or nervous system diseases

Other tests may include:

ECG (measures the heart's electrical activity)

EEG (measures the brain's electrical activity)

Genetic testing to look for narcolepsy gene

Sleep study (polysomnogram)

Multiple Sleep Latency Test (MSLT) to see how long it takes you to fall asleep during a daytime nap. Patients with narcolepsy fall asleep much faster than people without the condition.

Treatment
There is no known cure for narcolepsy. The goal of treatment is to control symptoms.

Lifestyle changes and emotional counseling may help you do better in work and social activities. This involves:

Eating light or vegetarian meals during the day and avoiding heavy meals before important activities

Planning naps to control daytime sleep and reduce the number of unplanned, sudden sleep attacks

Scheduling a brief nap (10 to 15 minutes) after meals, if possible

Telling teachers and supervisors about the condition so you are not punished for being "lazy" at school or work

You may need to take prescription medications to help you stay awake. The stimulant drug armodafinil is usually tried first. It is much less likely to be abused than other stimulants. Other stimulants include dextroamphetamine (Dexedrine, DextroStat) and methylphenidate (Ritalin).

Antidepressant medications can help reduce episodes of cataplexy, sleep paralysis, and hallucinations. Antidepressants include:

Selective norepinephrine reuptake inhibitors (SNRIs) such as venlafaxine

Selective serotonin reuptake inhibitors (SSRIs) such as fluoxetine, paroxetine, or citalopram

Tricyclic antidepressants such as protriptyline or imipramine

Sodium oxybate (Xyrem) is prescribed to some patients for use at night.

If you have narcolepsy, you may have driving restrictions. Restrictions vary from state to state.

Expectations (prognosis)
Narcolepsy is lifelong (chronic) condition.

It is not deadly, but it may be dangerous if episodes occur during driving, operating machinery, or similar activities.

Narcolepsy can usually be controlled with treatment. Treating other underlying sleep disorders can improve symptoms of narcolepsy.

Complications
Difficulty functioning at work

Difficulty with social activities

Injuries and accidents, if attacks occur during activities

Side effects of medications used to treat the disorder

Calling your health care provider
Call your health care provider if:

You have symptoms of narcolepsy

Narcolepsy does not respond to treatment, or you develop other symptoms

Prevention
There is no known way to prevent narcolepsy. Treatment may reduce the number of attacks. Avoid situations that aggravate the condition if you are prone to attacks of narcolepsy.

References
Biller J, Love BB, Schneck MJ. Sleep and its disorders. In: Bradley WG, Daroff RB, Fenichel GM, Jankovic J, eds. Bradley: Neurology in Clinical Practice. 5th ed. Philadelphia, Pa: Butterworth-Heinemann Elsevier; 2008:chap 72.
Mahowald MW. Disorders of sleep. In: Goldman L, Schafer AI, eds. Cecil Medicine. 24th ed. Philadelphia, Pa: Saunders Elsevier; 2011:chap 412.

[BlueSkyJaunte]

Based on personal experience I'm going to go with celiac disease. A simple blood test is all that's needed for a near-certain diagnosis. Full-blown symptoms can come on at any stage in life.

Long story short, the presence of gluten (a protein found in wheat and wheat relatives) in the system causes an autoimmune reaction that makes the small intestine largely ineffective. Result is malabsorption of nutrients, leading to everything from mild anemia to chronic fatigue-like symptoms. Treatment is simple though not a lot of fun: eliminate all wheat and gluten-containing products from the diet. The diet must be STRICTLY followed with particular attention paid to potential cross-contamination in food prep.

I hope your friend's daughter feels better soon. Having a sick child and not knowing what to do is heartbreaking.

[Tobra]

Not to side track, but my understanding of chronic fatigue/fibromyalgia is that it is a sleep disorder that manifests itself as cfs/fibromyalgia.

For the kid, they have checked all the obvious stuff already. It is going to be an oddball. I would suggest a new set of eyes/doctors to look at it. Shriner's Hospitals do a lot of good stuff and deal with kids, that would be my next call if it were my kid.

If it is depression, it is because of something. If there is no something, that ain't it.

[sc_rufctr]

Type 2 Diabetes but the docs would have checked. (I hope hey did)

[Jim Bremner]

Originally Posted by pwd72s

My thought as well...but it doesn't show up this early..not usually, anyway. But Cindy can recall having minor symptoms in her mid teens, then dismissed as other things. Jim, does your wife have the same experience? Now remembering symptoms before diagnosis?

Joanna says that hat days she could hardly move as a teen ager. Symptoms really started in her 20's and by the time she met me everything went bad! Thanks hon!

Right now Joanna is 47, Joanna needs a walker around the house. She can take 10 steps if she's holding onto someone strong. She can't lift either foot off of the floor 6" and balance isn't there.

Our new home is almost ready. The shower will be at ground level. No lip to step over. I've had the garage floor ramped to roll a wheel chair in and out of. The 4 entry doors to the house are not ramped yet but I know that the concrete guy will be out later this year

How is Cindy?

[pwd72s]

Originally Posted by Jim Bremner

Joanna says that hat days she could hardly move as a teen ager. Symptoms really started in her 20's and by the time she met me everything went bad! Thanks hon!

Right now Joanna is 47, Joanna needs a walker around the house. She can take 10 steps if she's holding onto someone strong. She can't lift either foot off of the floor 6" and balance isn't there.

Our new home is almost ready. The shower will be at ground level. No lip to step over. I've had the garage floor ramped to roll a wheel chair in and out of. The 4 entry doors to the house are not ramped yet but I know that the concrete guy will be out later this year

How is Cindy?

We're very lucky...Cindy still walking...hasn't used the scooter for nearly a year. Only had to build simple wood ramps to make our house scooter accessible. Can remove them when not needed. Of course, the fatigue factor means we make no long term plans, take no trips longer than a day, etc.

We do subscribe to the thought that people "get" MS early on in life...it's just that the bad symptoms don't show until later...usually early 30's. Cindy was diagnosed at age 30...we hadn't been married long.

To stay on topic..I wouldn't rule out MS until the MD's do. Another strange thing about MS is that most cases involve people who were born or raised near the 45th parallel...

[cashflyer]

My medical knowledge is limited to watching reruns of House, Quincy, Trapper John, and Martha Quinn.


Is it Lupus?

[algs911]

I say take her to a world-renowned children's hospital. I did this with my 12 y o Son's leg issue (we ended up at Packard Children's Hospital at Stanford). A team of doctors worked on him for a month or two before they came to a diagnosis, which was then corrected with great results.

Perhaps a different doctor, hospital, etc., will help. Never go to ONE hospital and expect to get the right answer. Even if they diagnose her issues, I'd STILL go to another renowned hospital to get another opinion.

Yes, this will cost money and time, but our children are worth it (where's my soap box?).

Al

[Superman]

Find some more-curious and perhaps more-talented doctors. "I dunno" is unacceptable.