United Brachial Plexus Network, Inc.

Hi Karen I read your post about your son and his trouble with liquids. What happened with his phrenic nerve? (I know that it is located very close to bp nerves and can be "pinched" with bpi injuries) Faith had a very hard time with breast milk/bottle (and had very poor sucking reflex) and lost weight for her first 3 weeks. Her doctor recommended starting cereals, etc. at 4 months and she does very well with a spoon and a regular cup now. She still gags here and there with the bottle. I suspected her phrenic nerve was involved....

Hi there
we had the same story with Gavin he weighed 10 lbs 13.5 oz at birth and by the time he was 6 weeks old he had only gained .5 oz despite taking 9ozs bottles of formula every 4 hours. We just never got to grips with breastfeeding, he was in Special Care Baby unit for 2 weeks and I wasn't confident feeding him, so we resorted to bottles. He used to take the bottle with no problems, but about 10-15 minutes later he would projectile vomit the whole thing up again, but no-one (not even me) connected it to his injury then. We were under the care of the local doctors and to be honest I think they just wanted the whole issue of his injury to go away (for obvious reasons) any way, they didn'yt tell me his horners was connected at first either!
So of course,Gavin was referred to a dietician because of "failure to thrive and poor weight gain" and we were given two substances to thicken his milk with one was called CAROBEL which I believe was made from the husk of the carob seed and another called NESTARGEL which gave him awful diorrhea(sp) so we stuck to the carobel. We used to heat the formula and add the carobel and shake it up till the milk got thicker.
It did him fine, he started to gain weight and I was advised to give him solids early, but to be honest,he wouldn't take them early at all, he hated them so he wasn't taking solid foods until about 6 months of age.
From what you say about Faith it does sound similar doesn't it, I think ( over here anyway) they don't do much to deal with the phrenic nerve unless they child is seriously ill. We've had about 5 children over here who have had to have surgery on the diaphragm ( I think it's called a plication) because the nerve was so badly damaged that the diaphragm was moved out of it's correct position casing both breathing and feeding difficulties. I do think that it's quite rare for the nerve to be that damaged though.
Sorry, I've written an essay - hope you'll forgive me.
By the way, he's fine now, no problems at all and fortunately he's only ever vomitted once since he was a baby when he had a tummy bug!
Karen