Chiari 1

[jojo74740]

My 15 month old son has had several issues since birth. He has ptosis of one of his eyes, and had some early eating and breathing difficulties. He was very difficult to feed and would scream and cry during feedings even when he was obviously hungry. He was diagnosed with reflux, and was put on a PPI. This has improved markedly since about 5 months of age, but he still has a very noisy breathing pattern at times. He has been hospitalized with pneumonia once at 9 months, and is on the 25th %tile for weight (as opposed to my other children who have been around the 90th). He also has macrocephaly with a head size that is completely off the chart, although I believe this is familial macrocephaly because I also have 3 other sons with a similar head size who are very normal. This child, however, is delayed with expressive speech and gross motor skills. He is just now pulling himself to a stand, and still has very poor coordination of his feet and legs. He vocalizes very little. However, fine motor and receptive language seem to be relatively on target for age. He had an MRI done recently which revealed a "crowded cisterna magna" and a "4-5 mm extension of the cerebellar tonsils beyond the foramen magnum, with clinical correlation recommended for symptoms of Chiari 1". The neurologist insists that this has "nothing to do with his problems, because there is no CSF obstruction". I am seeking a second opinion, however, I think the neurologist is overly focused on the macrocephaly, without considering the possibility that it could be benign, with the chiari 1 possibly causing symptoms. Is this a likely possibility or am I grasping at straws in my efforts to find an explanation? The MRI was otherwise normal.