My eight year old niece, diagnosed with type�1 diabetes a month ago, developed cerebral edema from DKA and miraculously lived through it (only 10% of all cases survive). However, she suffered brain damage and hasn’t stopped crying since she’s woken up nor can she walk or talk. Her parents are concerned about her recovery because there are so few cases out there for doctors to reference. Do you know of any other cases of children who have survived this condition? Do you have information on how they have recovered?

You should have your niece’s parents talk to their diabetes team since they would have the best information, recommendations and specific knowledge about prognosis. Some of the diabetes chat rooms may also have some others who can share their experiences. A lot would depend upon the specific damage to what parts of the brain and therefore neurologic and physical therapy/occupational therapy concerns would be important to address.

SB
Additional comments from Dr. Larry Deeb:

My experience is also anecdotal. I am not aware of a paper on outcomes, only those on actual cases, fatalities, etc.

LD
Additional comments from Dr. Donough O’Brien:

Over twenty years ago radiologists showed that some degree of cerebral edema is present in nearly all cases of severe diabetic ketoacidosis. It is most likely to be fatal or to cause permanent neurological damage in young children who are newly diagnosed. Because this severe form is quite rare it is often not thought about in time to prevent severe neurological damage. I think that you would find it very helpful to read a recent report on this Diabetic ketoacidosis with intracerebral complications Your local librarian should be able to help you to get a ‘full text’ copy if you would like at rather modest cost.

DOB
Additional comments from Dr. Sandra Raff:

Cerebral edema was a common complication of treatment of DKA [diabetic ketoacidosis] prior to the 1970’s when low dose insulin infusion methodologies were developed for treating DKA. The occurrence of some mild cerebral edema with treatment of DKA is not uncommon when looked for, but is not routinely diagnosed. I suggest that if the irritability described does not resolve promptly, that consultation with a neurologist in addition to an endocrinologist skilled in treating with children with DKA be obtained.

SR

[Editor’s comment: Unfortunately, I have seen a handful of children in this situation, and ultimately most have done okay. Your niece needs a referral to a head injury team to evaluate how much damage there has been to her brain and to develop a comprehensive rehabilitation program to meet her needs. There are many of these centers throughout the Country.

I would suggest having this child’s parents work with her primary care physician, her diabetes team, and a medical social worker to find appropriate placement for rehabilitation services. In addition, a medical social worker will be able to determine State and Federal benefits this child is entitled to.

SS]