rsuggs Posted November 30, 2012 Report Share Posted November 30, 2012 Hello all: My son obtained strep in 2010 at age 9 and lost 18 pounds. He slowly regained most of his weight back, but regressed into full blown Aneroxia Nervosa in August 2012. After my son was in a treatment residence for Aneroxia for 2 months, he regained his weight, but he still struggles with his fear of eating. Currently, he is a patient of Dr. Kovacevic in Chicago and is receiving I.V.I.G. at the Oakbrook Medical Center. If anyone would like advice on how to handle a child with these issues or discuss the matter, I would be happy to speak with you. I have strep in my family history and have been learning about this disease for the past 2 years. Link to comment Share on other sites More sharing options...
StillHopeful Posted December 1, 2012 Report Share Posted December 1, 2012 My son does not have the same symptoms as yours but I wanted to wish you good luck. I am sure there are others on this board and can relate and will help you. Link to comment Share on other sites More sharing options...
Hopeny Posted December 1, 2012 Report Share Posted December 1, 2012 rsuggs you may wish to reach out to the parents of EW via private message at the Free Elizabeth Wray facebook page, or private message to Beth Maloney on the Saving Sammy Facebook page. The story that has been posted about her is that she had Lyme/Mycoplasma PANS triggered anorexia, her parents took her to Boston Children's Hospital who essentially denied PANS, took her off abx, had the state take away her parents rights and gave the hospital temporary custody virtually imprisoning her in a psych ward. It sounds like a horror movie, if there is guidance you can offer this is definitely a case that could use it. Link to comment Share on other sites More sharing options...
Kathy4Him Posted December 1, 2012 Report Share Posted December 1, 2012 rsuggs...So sorry you are dealing with the anorexia at such a young age! My son had just turned 19 when his symptoms began. The first 2 symptoms were abrupt onset ocd and anorexia/severely restricted eating. They both took us by surprise as he had never had either before and he loved to eat out with us all the time and would eat anything I cooked at home. He was never overweight to begin with because he was a tournament tennis player so maintained his weight around 145-150 lbs. He very quickly lost 10 lbs and has been as low as 118 lbs. It has been a scary struggle to battle the eating issues along with the ocd. Unfortunately, we began to accomdate his "rules" concerning food as you do what you have to do to keep them out of the hospital. We have had some great Drs in the last 2 1/2 yrs to help with monitoring him. He has been on several "crazy" diets including 7 mths of drinking high protein shakes 3 times a day with no solid food. Currently and for the last year he eats only 5 things and will only eat at certain times. It is hard but we manage and he is up to 135 lbs which was an avg weight for him when he was playing lots of tennis. I hope you can find some things your son will eat and know that you are not alone in this battle. Kathy Link to comment Share on other sites More sharing options...
rsuggs Posted December 2, 2012 Author Report Share Posted December 2, 2012 My son does not have the same symptoms as yours but I wanted to wish you good luck. I am sure there are others on this board and can relate and will help you. Link to comment Share on other sites More sharing options...
T_Mom Posted December 5, 2012 Report Share Posted December 5, 2012 I am so glad your son is seeing Dr K. I will be very interested in the results for the eating issues after IVIG. Please keep us posted! All the best to you-- Link to comment Share on other sites More sharing options...
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