I'm new here!
Hi, my name is Suffering2002. I'm here because I need the feedback and guidance from others with this condition.
Hello to all,
When my son was an infant we noticed an acrid urine type odor frequently. I consistently thought he must need a new diaper. I'd change dry diapers and wipe him down. After years Of noticing only perspiration a light clicked and I began my research. Eventually I found the late Dr. Pretti (Monell senses center in Philidelphia). He was kind enough to take emails and calls from both myself and my son's grandma; both of us had done the research and were very concerned and distraught imagining the future for our beautiful baby boy. He was amazing, reassuring and calming. Dr. Preti has since passed and my son is now 13 and dealing with looking highschool straight in the eyes. When he was 6 he got off the bus and had his winter jacket on backwards...hood over face. On our walk to the house I asked him what's going on and he said mom they said my breath smelled like shrimp. It doesn't! That is the day we had the talk. Very young I am aware however he needed to know why I tried to restrict his diet. At that time I had asked multiple pediatricians for genetic testing, one finally agreed and called letting me know my son did have the mutation... I know that if my armpits feel funky at work I become self conscious....I very much worry about my son going into highschool. We have tried riboflavin powder supplement to increase the processes still available within the system and try our best to avoid what seems to make it worse. Those foods include eggs, milk, beef, beans broccoli, potato. I am so afraid and my heart just breaks for the strength I know this child has. Being a young man he hides bad days and I know when he's had them by his avoidance. I want my son to have an amazing life and future and because this is so rare and only psychologically distressing there is little to no funding. Any help..in anyway is greatly appreciated. That all being said this is not a sob story. My son is a happy positive young man who understands as much about his condition as I do. He loves playing saxophone in jazz band and has friends in school and out. That doesn't take away his struggle though. All of my love to all of you!
If anyone on here that may be going through same health condition as me, I would love to hear from you please! I would love any advice or support as much as possible. I struggle on a daily basis.
It's a very rare disease that only affects a small amount of people in the world.