Hi everyone,

First of all I’m sorry I haven’t posted in a while, my computer got a really bad virus that ended up costing me $300 to fix...ouch.

Anyway, please help me with any advice you can....Kelly, if you read this and have any suggestions, please respond, Danny too and anyone else who has dealt with anything like this!

Symptoms:

Chelsea started this past winter having episodes of what appears to be low blood sugar, that showed itself with a mild headache type symptom. We would give her some Gatorade, or a granola bar, or an orange and the headache would disappear.  That lasted for a few months. Now these episodes have progressed and become more frequent. Now her symptoms are:

Complete draining of colour to her face: she actually becomes ashen

She feels faint, and must sit down, dizziness and unsteadiness

The headache is worse, and lasts longer

These episodes are occurring at least once a week....particularly when she is singing in Chorus, or playing her recorder in Church, but they have also happened when she is swimming at swim team practice and also just when she is sitting around the house. It takes longer for a sugary snack to make any difference, and this is effecting her life. Sometimes, the headache does not go away, and I have to give her Motrin or Tylenol to relieve it. Last Sunday I had to pull her out of rehearsal for Easter Sunday’s recorder ensemble at Church because she scared me so with an episode.

Her endo insists her levels are "OK"....actually they are pretty good. Is this something other than CAH? The endo does not seem to think it has anything to do with the CAH, but I can’t help feeling that it does.  I don’t know where to turn or what to do to help this poor little girl whose life is being interrupted by these episodes! Her pediatrician tells me to talk to the Endo, the Endo says it’s not anything to do with the CAH.....where do I turn?

Yesterday I talked to her about starting a diary...I told her I wanted her to write it down whenever she felt the slightest bit dizzy or weak, to write down what she was doing, and if she had eaten before it happened...if sugar helped her feel better, and if the headache lasted longer. I told her I wanted her to be careful to eat three good meals, and healthy snacks.

Chelsea takes 5 mgs of cortef three times a day, she gets a Lupron-Depot shot on the first Thursday of every month. She also takes Singulair, Zyrtec-D, Centrum muti-vitamins, and 2 Viactiv calcium chews every day.  We run 3 hepa air cleaners in our home at all times.

She has also had bouts with bloody noses occasionally.  She is 9 years old and 4’11" tall and weighs about 95 lbs. 

Please help with any advice you have. I just don’t know what kind of specialist to take her to now to help her!