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Special Needs little girl with rare episodes

My daughter is a non verbal special needs child with multiple global disabilities including quadriplegia. Over the past year she has been experiencing symptoms that to many specialist say are unexplainable. I am told that they are a possible form of a dysautonomic disease, but not sure what?? They have all been stumped and confused. Her symptoms consist of episodes of increased heart rate, increased body temperature, swelling and redness of all extremities, arching of back and neck, stinking out tongue, red blotches on face and extremities, she grabs onto her tummy and zones out. These episodes last anywhere from 10 seconds to 2 hours at a time, three to four times a day. She seems very uncomfortable and in some sort of  pain while she goes into these horrible spells.
2 Responses
1530171 tn?1448133193
Hi aruilerasocal1 and welcome to the forum.

It must be a very difficult situation to live on an ongoing basis.
I must commend you for all your courage and your love, to raise your child
under these circumstances. it is great that you're sharing this with us and I hope that you will get some helpful information.

My personal opinion is that there's likely some level of an adrenal crisis taking place, perhaps linked also to her suspected Dysautonomia.
To rule this out , she will need a ACTH stimulation test.
Also things  that are routinely checked,in relation to this, would be am and pm cortisol levels, potassium and sodium levels, ECG (probably already done, to check for QT interval in regards to heart tachycardia)
and hypoglycemia.
Treatment should be started as soon as a dx is established.

Note that this is not a substitute for medical advice.

Wishing you and your daughter well.
Niko
Avatar universal
Hi Niko,

Thank you for your response and information you provided. Yes, its very hard to see her go through this everyday. Yesterday was a difficult day for her, her episode lasted 3 1/2 hours. Her body was drained.  Her pediatrician actually tested her for a  for suspicion of a Adrenal Glad tumor.  She was hospitalized in December 2012 for  24 hour urine testing. However, everything came out within normal limits. I will mention the ACTH stimulation testing with him, as he is very open to any testing or possible diagnosis. Thank you again!!!    
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