It has been a while since I have visited this board, but, I wanted to share with you all about my Thomas; salt wasting CAH. At first, we would find him in his bassinet, pooled in urine; he slept ALL the time, which we attributed to the CAH and his dehydration (this was 3 years, 2 weeks ago). Also, he runs hot, which gained him two hospital admissions within 2 months for sepsis workup; they found nothing, but, cancelled his impending discharge when they found an axillary temp of 101.6, after I picked him up and asked them to take his temp. He always seems to run around 101. However, when he was 13 months old, we got our answer; he has "moderate to severe brain damage" in that he was missing his corpus callosum, the mid part of the brain, which connects the left and right hemispheres and allows them to communicate. Most of these kids can't walk or talk, or, at least very limited; our Thomas, now age 3, talks in 6 to 15 word sentences, is age appropriate, shows really no delays that the untrained eye can tell, and I think the drug regime for the CAH has influenced his intelligence. I am trying to get someone at Mayo, NIH, Cleveland Clinic; anywhere, to take an interest in this. However, due to his neurological format, dr. said that that could explain the temperature regulation problem. He said that, when there is a neurological condition, it can hamper maturity of the temperature regulation. His hypothalumus and pituatary gland appeared grossly normal, but, the MRI can't tell everything. His MRI and he, nor his MRI and normal EEG, do not equate. ACC usually occurs with septo optic dysplasia, but, when ACC is found, metabolic problems should be checked for. Not to alarm anyone, but, features of ACC are wide set eyes, lower than normal ears, frontal bossing (probminent forehead), mid face hypoplasia and epacanthal folds, and other midline deficits; Thomas had bilateral kidney hydronephrosis, which he grew out of. He benefits from sensory integration therapy; if any developmental delays are noted, I would encourage you to read the "Out of Sync Child" and incorporate some sensory input into the child's play. Or, have them evaluated by an OT (occupational therapist) certified in SID, sensory integration dysfunction.

We found other infants with CAH slept alot, ate poorly, gagged easily, needed feeding tubes, etc. So, if there is any suspicion on your part that there is something else not right, I encourage you to CHECK IT OUT AS SOON AS POSSIBLE. The endo found the markers of ACC, and did not refer us to an MRI; we lost 6 months. With early intervention and developmental pre-school, they can overcome deficits, but, it is a long process.

INSURANCE:  find out if your company provides wholly insured coverage, or is self-insured and is administrated through a TPA, third party administrator. If so, and you are having problems (most big companies go this route as it is cheaper) contact your BENEFIT ADMINISTRATOR, and document every call, time, who you talked to, first and last names, what they said, etc. Then, present this to the B.A.; you may find it resolved in your favor. Your local Parent training information network, IPIN, or INSOURCE, can help. Email me with any questions.