15 and really ill

[shooter1970]

My daughter had Glandular fever in the summer of 2005 and has been unwell ever since.
She has been diagnosed as having Chronic Fatigue Syndrome in Nov 2007.
Her other medical history is as follows
Migraines for last 6 years many treatments tried only Nasal spray Imigran helps Last and most severe one was Dec 2007.
Asthma due to Whooping cough at 2 months old.
Eczema since a baby
All the above are now well controlled.

New symptoms since April 2007

Sleeping up to 18hrs a day
Trouble getting to sleep at a normal time
Weight gain from 9 1/2st to 13 1/2 stone in last 12-18 months
Poor appetite most days then occasionally severe carb cravings / insatiable appetite
Violent pink/purple stretch marks virtually all over her body
Slight fatty deposit at back of neck
Permanent headache
Very poor concentration
Chronic fatigue
Persistent thirst
Chronic joint pain
Clicking joints
Knees give way sometimes when standing or walking
Mood swings

She has normal menstrual cycle although very heavy and has only added about 1/2 an inch in height in last year.

She has had a serum cortisol blood test that was >500 nmol/L at 3.30pm

Our GP is convinced that it is Cushings so much so that he has arranged an overnight dexamethazone suppression test which starts at 9am 12/06/08

Saw her paediatrician on Monday but she seemed very put out that GP hadn't consulted her and she says it can’t be cushings as its extremely rare and she's still having periods (see her cause of migraines but she's an Endo consultant Has been over a year) She talked to my daughter as though she's a 5yr old so has put her back up.

I would like her to see an adult endo that treated her father for 15yrs before he died in 2006, Her father had IDDM, But the paediatrician says too young to be seen by him. We see her again in November but she said she will call me in 2 weeks to discuss the results.

What do you think I should do?

[Deanna L Aftab Guy, MD]

Cushings is rare in children but she is almost an adult, the random cortisol is very very high, work only with an endocrinologist and if possible a pediatric endocrinologist. See what the overnight study shows, this will tell us if the brain is making the driving hormone or if it is coming from her adrenal gland itself, then they can decide about imaging her adrenal with an ultrasound
Be sure that they repeat her labs also, 3 separate urines for free cortisols will help, this is done over 24 hours for each collection. I hope this turns out well.

[mdhatton]

I have a 13 yr. old with most of what you have said and more.  he gained 50 lbs. from Nov.07 to Jun 08. He was having the stretch marks also. His eye Dr. told his Neuro to give him Diamox  for a possible pseudo Tumor Cerebri which affects overweight teens. he was not overweight when it started. He lost 17 lbs. in 2 wks. It was swelling.  He had good eye sight but when they did a vision field test it came out abnormal for peripheal vion. With normal eye test. Then in 3 wks was 75% worse on Vision file test again. Gave him Diamox and ended up doing IV steroids to get inflammation in body and optic nerves.
Had severe clonus is how it all started in Nov. 07. The psuedo tumor is a moch tumor that causes alot off migraines. Also they just checked his blood gases and plasma for acidiosis and  Ammonia. Found his Ammonia levels to be 71 when 33 is normal. this causes poor cognitive, concentration and many other things. We did Cushings and was normal. This may not help you but It might be something that clicks for you.
Also I would like to know what is MG?
They still cannot find the underlying diagnosis on my son but the Psudoe Tumor was the swelling, stretch marks.
I am not a Dr. and my story may not help but it is a work up to look into.
They did a blood test before during and after exercise to find out about the ammonia levels and other tests. Lots at once. maybe this will give you alot more answers to rule out. They had said CFS on him and are finding out it is Metabolic.
I Hope this helps in some way for your daughter. I know how it feels. Been there. Am there.
Good luck and God Bless!

[shooter1970]

anyone got any Ideas