Hi, I have a small son who has just been diagnosed. Are any of you parents of kids with the condition? There isn’t much info and I would really appreciate speaking with others in a similar situation.
thanks
Hi Susisu70
I have been dealing with this for a long time and I would ask my brothers and sisters if they notice anything.They always say no. But I have 1 bro and 1 sis that I think deal with it.They never stop living their life ,but I did until about 4yrs ago. I know children learn by example and now I have to put my game face on and show them how to be strong proud young men. And to know that man may have many words but the MAN above has the last one.So I do try some of the methods and I feed my kids really good healthy diets no junk and sodas etc. But I never have noticed anything from them nor has anyone else brought it to my attention.
None of my kids have been diagnosed with this condition,but I would like to ask you a couple questions if it’s ok.What made you have your son tested? Was it something you detected or someone else? And how did you have him tested was it by his Pediatrican? Or a different MD? Sorry my post is all out of order and so long .Please take care of you and yours because if you don’t who else will.
Hi IamwhoIam
Thanks for your reply. To answer your questions, my son who is now 9 has had a transient fishy smell on and off since he started eating. I used to put it down to eating fish but soon realised it wasn’t. It bothered me a bit but thought it was just immature digestion? Anyhow he changed school a year ago and only recently said the other kids had been cruel saying he smelled of fish. He then said it was OK because it was ages ago and he doesn’t smell now. I went to our general practitioner as I had a patient with this syndrome and who was not in a good place psychologically otherwise it wouldn’t have bothered me. I hadn’t noticed the smell for ages until a couple of weeks ago, caused by stress I think? He was getting stressed about a cablecar. Can’t work out what foods do it. Interestingly most of the foods on the low choline diet are things that he just won’t eat. He says even the smell of cheese makes him ill, eggs and fish too. He also gets bowel symptoms when he has the smell (loose stools) don’t know if this is common? The diagnosis came after 2 24hr urine tests and we are waiting to see a metabolic paediatrician to look at a genetic test and to confirm the diagnosis. Its great to speak with someone else because it feels a bit like “i’m it”, no-one seems to have heard of the condition.