Discussions By Condition: I cannot get a diagnosis.

Infant, 4 weeks in ICU, still no answers!

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Frustrated Dad
  • October 26, 2007
  • 08:25 AM

My six month old baby girl has been in ICU for 4 weeks without a diagnosis

HISTORY - She has been on high dose steroids (3mg/kg prednisone) for about 4 months due to hemangiomas in her airway. Had a surgical resection at 2 mo old and resumed steroids when symptoms reappeared. Airway is currently stable.

SYMPTOMS - Began having diarrhea which became progressively worse and eventually was accompanied by intermittent vomiting. We took her to our local Childrens' Hospital where she has received all of her treatment, since she could not miss her steroids

She was treated for severe dehydration and electrolyte imbalance and was stabilized. She was experiencing severe abdominal pain as the diarrhea and vomiting persisted. Countless blood tests, urine analysis, stool samples, ect... gave no answer. During the next 10 days many new serious problems presented; anemia, low platelet issues, bloody stool and urine, loosing protein and glucose in her urine (Fanconi Syndrome). These symptoms, for the most part, have all been stabalized, but we are left with our original problem.

CURRENTLY - She continues to have diarrhea despite not being fed (secretory diarrhea), is unable to hold anything down, has intermittent fevers, and a heart rate between 160-210.

We have seen dozens of doctors, the full array of specialists, and still no answers. A few days ago she had an upper and lower endoscopy which will be available tomorrow.

Are there any doctors or anyone who can help?...!:( :confused: :mad:

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