Special Needs 8 yr old girl with unknown rare episodes

[aguilerasocal1]

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.

[Heiferly]

I'm assuming that considering the skin redness and changes in heart rate they fully explored the possibility of autonomic dysreflexia? In quadriplegic patients, that's one thing to rule out when discussing dysautonomia. The sticking out of the tongue is reminiscent of certain dystonic reactions; does she have any diagnosed dystonia or is she taking any meds that can cause dystonic or extrapramidal reactions? Even something as simple as benadryl can be the culprit.

I'm also a tubie! I have a g/j, but have never had a nissen fundo. Does she have visceral hyperalgesia as well? Have they cultured her stoma to rule out infection? Does she take reglan or domperidone for motility, which can cause extrapyramidal symptoms?

[LivingInHope]

This must be so difficult for you to watch your daughter suffer like this!

The traces of thyroid antibodies definitely makes me think you ought to aggressively pursue the thyroid angle.  See private message for more info.

[aguilerasocal1]

Hi there :)

They have ran multiple test. Upper GI, B swallow, she is gtube fed and is on acid reflex meds already as well as having a nissen done twice. She is followed by GI for this and she also has CVS(cyclic vomiting syndrome)

She has severe brain damage as she had meningitis encephalitis at 2 months of age (only 30% of her brain was left), so she's followed by neuro.

They did a EEG and MRI / CAT Scan, lots of blood work, checked her thyroid (all was well except she had traces of thyroid antibodies???), we have seen two allergist. She has been hospitalized twice for this and was released because they have NO CLUE!! The last time we were in the hospital she coded and was unresponsive I think it was because the episode got so bad, I think her body just shut down :(    


They have not considered gallbladder/ duct work problems OR abdominal aortic aneurysm BUT I look into it!!!

THANK YOU any information or leads HELPS!!    

[LivingInHope]

What tests have the specialists run?  

For example, have they ruled out thyroid storm? See symptoms:
http://www.emedicinehealth.com/thyroid_storm/page3_em.htm

See private message for some info re: red and swollen extremities, etc..

Have they checked for neurological disorders (beyond the quadriplegia)?

Have they ruled out acid reflux?  I notice when I look up neck and back arching when it comes to babies (though I know your child is older), they mention acid reflux.  If you have burning in your stomach, that can be painful.

Have they considered a gallbladder/duct work problem?  (See private message).

Have they ruled out an abdominal aortic aneurysm that is inflammatory?  (See private message)