hello,
I will try to keep it shortish....I posted months ago with BF issues but since can't find my username.
DS was 1 in August. Normal PG/birth. 3 normal older siblings. He weighs 18 lbs, looks like he is 6 months old, and he really doesn't do anything except hold his head up and roll.
I tried my heart out to BF him but I could not get it to work and could never figure out why. He never gained any weight. He is my 4th so I felt like I kind of knew what I was doing and I did not feel that supply was an issue.
Since then, he cannot tolerate ANYTHING. I have tried: milk formula, lactose free formula, soy formula, Nutramigen, Neocate, Elecare, Weston Price goat milk formula, oat milk/carrot juice formula, cow's milk, soy milk, and I just mixed up some of the beef broth/liver but it keeps getting stuck in the nipples! All animal products caused severe constipation which Lactulose, Miralax, molasses, water, etc did not budge. The oat milk seems to be causing some kind of awful stomach upset but his poop is liquid.
He is hypotonic and has been diagnosed as legally blind with optic nerve atrophy. He has had a normal CT scan and MRI. Allergy tests all came back normal. He is very developmentally delayed. I feel it is getting worse, he is crying constantly and the past few days he won't eat more than 15-20 oz per day. He gags on solids and is now gagging on his bottles.
The pediatrician keeps telling me they are out of ideas and to call the gastro. Gastro says more tests more bloodwork. Gastro also prescribed cow's milk mixed with Nestle Carnation Breakfast for his main source of calories. (?!) I read on here about metabolic/mitochondrial which I now wonder about. I called ped and again they said call gastro. I called gastro and they said to wait for his follow up appointment which is in two weeks.
In the meantime he is screaming half the day and won't eat hardly anything. I am ready to take him to the ER. I am at the point of being beside myself. ANY ideas at all?
He is currently having PT which is helping slowly. However I feel like no one will help. We have to drive to the next town 40 miles away for any specialists or tests. I am PG again so you can imagine I am having a breakdown. Thanks so much for any help.
Amanda
I will try to keep it shortish....I posted months ago with BF issues but since can't find my username.
DS was 1 in August. Normal PG/birth. 3 normal older siblings. He weighs 18 lbs, looks like he is 6 months old, and he really doesn't do anything except hold his head up and roll.
I tried my heart out to BF him but I could not get it to work and could never figure out why. He never gained any weight. He is my 4th so I felt like I kind of knew what I was doing and I did not feel that supply was an issue.
Since then, he cannot tolerate ANYTHING. I have tried: milk formula, lactose free formula, soy formula, Nutramigen, Neocate, Elecare, Weston Price goat milk formula, oat milk/carrot juice formula, cow's milk, soy milk, and I just mixed up some of the beef broth/liver but it keeps getting stuck in the nipples! All animal products caused severe constipation which Lactulose, Miralax, molasses, water, etc did not budge. The oat milk seems to be causing some kind of awful stomach upset but his poop is liquid.
He is hypotonic and has been diagnosed as legally blind with optic nerve atrophy. He has had a normal CT scan and MRI. Allergy tests all came back normal. He is very developmentally delayed. I feel it is getting worse, he is crying constantly and the past few days he won't eat more than 15-20 oz per day. He gags on solids and is now gagging on his bottles.
The pediatrician keeps telling me they are out of ideas and to call the gastro. Gastro says more tests more bloodwork. Gastro also prescribed cow's milk mixed with Nestle Carnation Breakfast for his main source of calories. (?!) I read on here about metabolic/mitochondrial which I now wonder about. I called ped and again they said call gastro. I called gastro and they said to wait for his follow up appointment which is in two weeks.
In the meantime he is screaming half the day and won't eat hardly anything. I am ready to take him to the ER. I am at the point of being beside myself. ANY ideas at all?
He is currently having PT which is helping slowly. However I feel like no one will help. We have to drive to the next town 40 miles away for any specialists or tests. I am PG again so you can imagine I am having a breakdown. Thanks so much for any help.
Amanda
s.
.
