My child has giant axonal neuropathy (gan). What doctors should we prepare to see?

Kinky hair always. There. Usually appears in infancy or early childhood, and is progressive. Early signs of the disorder often present in the peripheral nervous system, causing individuals with this disorder to have problems walking. Later, normal sensation, coordination, strength, and reflexes become affected. Hearing or vision problems may also occur.
Pediatric neurologis. You child has a hereditary rare problem, and you may find your best advice and guidance at a children's hospital associated with an academic facility. Find a pediatric neurologist with experience in neuromuscular disorders.
It depends... You may need to see a neurologist or a neurosurgeon.

Related Questions

What are the differences between giant axonal neuropathy and gigantism?

Big difference. Gigantism is due to excessive secretion of growth hormone prior to closure of the epiphyseal plates. Giant axonal neuropathy is a rare autosomal recessive disorder of nerve cell protein that causes peripheral nervous system dysfunction in infancy and progresses to involve hearing vision, and eventually higher cortical function. One sees seizures and kinky hair in most cases.

Are there any kinds of GI diseases that cause axonal neuropathy?

Some. Axonal small fibre neuropathies can occur from pernicious anemia, gastric cells, and celiac disease, small intestine, but digestive issues can accompany alcohol nutritional and diabetic problems, and these can cause large fiber axonal neuopathies. Porphyria can cause axonal issues and the intermittent form can cause attacks of stomach pain.

Just diagnosed with axonal neuropathy, absent peroneal nerves, etc. Other symptoms are feeling 'high' and I'm thirsty all the time. Ideas?

Diabetes. Increased thirst is a sign of diabetes. Also, the neuropathy would fit with diabetes. Feeling "high" could be a sign that blood sugars are not controlled. See your doctor and have some blood work done to find out what is going on.