Good morning. I came across this web sight hoping to see any new research on PIL. My 3 year old daughter was diagnosed at 9 months old and its been so hard as she as other siblings also. She has been on Monogen since. Her albumin levels were 2.7 I believe in Feb. she had oral surgery and had to have a cpl teeth removed and a few root canals be sues her teeth developed without the enamel. She is very swollen and her belly swollen. We try and stick to her low fat diet as much as possible. She was diagnosed with a sort of ADHD also. Her energy levels are extremely high and gets very aggressive. Daily! We do not know if this is due to the formula she is on or what. She also has some developmental delays and thankful will start school this year because of her special needs. This has been such a struggle for us. I am 41 years old and have a 9 year old daughter at home and also have recently welcomed a 6 year old foster child into our home per emergency cps reasons.
Our hands where very full with baby Mary already but could not close our doors to this little one. Mary (our 3 yr old) is huge and I believe all muscle and strong. Weighs a good 54 lbs and almost 4 foot tall now. And that was in Feb. I have not found any recent info on PIL and pediatricians here really do not know much about it. Her legs had a weird swelling almost hollow look to both of them and looked inflamed a cpl months ago and I worried. I appreciate any info you can provide for me.
Any low fat high protein desert recipes would be appreciated too=)