When I was pregnant with my daughter I had no medical problems other than gestational diabetes that was under control with diet and exercise. My sugar was always good during my pregnancy. My daughter was full term and weighed 8 pounds and 14 ounces and was 19 ½ inches long. I had no complications during labor. My daughter was Jaundice after birth with a bilirubin level of 21; she had to go under phototherapy for three days. While she was there the doctor discovered she had a severe case of acid reflux and was put on medication. I had a lot of difficulty feeding her as an infant. She did not seem to be drinking enough formula. She was also put on soy formula because of the acid reflux. She could not hold her own head up at 6 months old. She could not sit up until the age of 14 months. She started to crawl at 15 months although it looked like she was flopping forward. There was no hand and knee coordination. She did not stand until 16 months old. Finally at 17 ½ months she started to walk. She walks now but her balance is off and she walks with a large gait. She wears shoe inserts because she walks on the inside parts of her feet. Now the PT wants her to wear braces on her legs because her knees seem to be buckling out on her when she walks. She cannot walk too much or she gets very tired. She has been diagnosed with Hypotonia, Infantile spasms that seem to be improving with medication, global developmental delays and a cleft Palate. She has Tubes in both her ears now to stop the chronic ear infections. She has had her cleft palate repaired just 2 weeks ago and her bifid uvula is now only one. She had periods of severe constipation as a baby and then some times weeks of severe diarrhea. She goes to PT, OT and speech. She still does not really talk only a handful of words. She does not seem to understand things very well. She responds to more visual cues than voice commands. Her hearing is ok but she needs new tubes again because the one in her right ear has dissolved and the fluid is building back up. She is 23 months old now and weighs only 23 pounds. She is small has a slightly large head with flattening on the right side. She has almond shaped eyes, large pupils, flat nasal bridge and long fingers and toes. She has trouble sleeping every night wakes up screaming, and does this weird movement with her hands and her eyes. I was told these movements are not seizures. Her adenoids are large and she may have a food allergy possibly milk. She has had two clean MRI and a microarray chromosome test and the results are normal and so was her thyroid test. I suspected Autism but she responds to her name and loves to cuddle. She does have hand flapping and other charastics of Autism. She does ignore me sometimes but so do a lot of kids. I also suspected CP but I was told no because she is loose and not stiff. So now I wonder if it is hypotonic CP. Her right leg seems to always be a step behind her. I know a doctor is the best way to get diagnosed but she has a team of them and they all give me the run around. So I am looking for any thoughts or suggestions of what could be wrong with her. This way I have something specific that the doctor can test her for. Sometimes if you have a point of direction it is easier to find the diagnoses. Please help I want my baby girl to get better or at least have an answer and know what to do to manage her condition. Thanks
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