I am a grandmother of a beautiful 11 month old boy soon to be a 1 year old in Oct. He has been diagnosed with pachygeria. He doesn't sit up alone yet, makes sounds, loves peek-a-boo with family. Giggles and is very attentive. We have been told he is deaf as well. He doesnt eat any cereal or baby foods. Gags and cries and has difficulty in swallowing other than breast fed milk. Very happy and quiet baby. Don't know what the future will bring for "Mason Ray" but we love him dearly and hope to help him overcome his difficulties, and disabilities as much as possible as he grows. He is still very small, about the size of a 5-6 month old.
Would like to hear from others with this affliction and how you cope with it all. My son and wife are trying their best. He is working with early intervention with therapists to help him progress. Any information on this rare disorder and any helpful information on this subject would be greatly appreciated. There seems to be so little about it available except for technical medical. Something that the average parent and grandparent can understand is more helpful.