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kids with odd odors
Does anyone elses kids have unexplained odd odors? Jake's urine used to smell like pancake syrup. He does not have MSUD.
Katie's sweat has a sweet odor to it. I'm starting to really believe Jake had the same metabolic stuff going on as Katie when he was little. |
Langan definitely has odd smells, too.
When Langan was on keto, her sweat smelled like someone was smoking marijuana in her skin- I swear. Not that I have much opportunity to smell pot, but it's not a smell you forget. We never figured that one out and it has gone away now that she's been off the diet for so long. We worried about the mapile syrup urine disease but she was negative also. Her urine smelled really sweet a few weeks ago and I mentioned it to the pediatrician. He said some UTIs cause sweet smelling urine. We did a culture and sure enough she had a UTI. Langan's breath also sometimes smells really nasty- like fish. We are looking into it being a sinus issue. But I still think there's something metabolic going on that they don't have a name for yet. Sigh. |
fish smell sometimes associated with Carnitine.
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let'ssee. My son has smelled like:
Fish...carnitine supplements poop...I Tell you, his hair/skin/sweat/breath when not freshly washed smells like poop. He gets frequent baths. some odor I can't identify sickly sweet urine/skin. also that tart smelling urine that comes from proteinuria. (his breath has been horrid from various meds in the past.) and then he also smells like the million other 'additives' he self-applies to his body in the course of a day ;) oh! oops, that's irrelevant to this question....but true. |
some of the formulas leave a after effect on the breath, simply becasue of reflux. The maple syrup smell may be something simple like the UTI theory, or dehydration. Lauren's urine smelled syrupy when she wasnt getting enough water and it was concentrated. It looked ok in color, but when examined in the lab along with serum levels, she was slighltyly dehydrated. try some more water to see if that helps.
Alot of sweet smells come from an acidosis...and sometimes can i think indicate ketosis in some kids, cant it? I thought i had heard this at one point in time. A raunchy smell on the breath in particlar can indicate a sinus or throat infection. Sweet smelling sweat, never heard of that one, salty sweat, sometimes indicative of CF. but it gets confirmed with a sweat chloride test...and chances are ya'd know by now. |
I asked our geneticst about it. She had never heard of MMA giving off a sweet smell, BUT we sat and brainstormed together, she knows I'm a research hound. Both MSUD (which the kids do NOT have, but Jake did smell like) and MMA (which Katie has a form of and we don't know if Jake had as an infant) they both involve an amino acid called isoleucine, which in whatever kinda process it involves is believed to cause the maple syrup urine smell in MSUD.
So, we came to the theory that possibly Katie smelling sweet is due to the MMA (or more specificly the isoleucine pathway being messed up) and because Jake had a similar odor, though not exactly the same, it is likely he had this form of MMA as an infant. We know Jake's wasn't UTI's. Though everytime I would ask about the smell they always said, well, it's probably the depakene, it can do weird things to urine. They knew he didn't have MSUD, so they weren't worried. She said that unexplained (ie- not sinus or carnitor, etc) odd odors are often signs of underlying metabolic disorders. Katie mostly smells sweet from her neck up and most specifically on one patch of hair that has a different texture and growth pattern than the rest. Jake has this exact same area of hair, but I've never known it to smell sweet, but I may just not have sniffed at him back then you know? ...........Jake's breath always smells like poop! Now I know that one is sinuses! Wow! Langan smells like pot? How do explain that one to folks !!?!! :D :eek: No, I've never personally done drugs, but pot is one you just know when you smell it! |
Aidan has had breath like COMPOST at times! I think it comes from reflux and also constipation. Luckily, it only happens when he's under the weather. When he was younger he sometimes had ACETONE breath! That concerned me, yet I never could get a doctor to explain or seem to take it very seriously, so I posted here about it.
His bad breath incidents increased after the G-tube. His urine has a strong smell, at times but not sweet. I think it gets too concentrated sometimes, from borderline dehydration. Aidan's formula is Vanilla flavored Peptamen Jr, which tastes to me like melted icecream. I'm sure it must give him a sweet smell that I'm too familiar with to detect. I mostly love the way he smells. Does Jake drink a lot of sweet smelling nutritional supplement drinks? |
Jake doesn't have the smell anymore. It was when he was an infant. He was on one of the nasty baby formulas. Can't remember which one. But he didn't tolerate any of them. He projectile vomited. Which come to think of it may be another indication of him having the protein intolerance (MMA) Katie has had breastmilk up until the past couple months and now she's getting maybe 8 oz a day of formula.
Katie's urine has a wicked odd smell to it. Not necessisarily BAD, just weird, but I'm assuming that is from her hyroxocobalimin shots. But her breath is lovely. I love to smell her breath, does that make me weird? :D Excluding when she drinks the formula. |
oh, yeh. I had completely forgotten. Jake's poop smells like moth balls sometimes. Thanks for reminding me, Jake... pe-u! yuck!
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Before Paige was ever evein considered as a new infant to have any sort of problems, one thing I always mentioned to the dr.s at her 1 week check up, 6 week check up, and so on was the strong, strong scent of her urine. It wasnt maple syrup sweet, but it wasnt a urine smell either. a year later she was diagnosed with a uti which led to a battery of tests that eventually led us to kidney disease. but thats probably not the case with Jake or Katie. But I mention this because her acid levels are high (can't remember exactly what). It seems like all her tests are always a little off or borderline, when they check her blood or urine. But i didnt realize until this post that I havet noticed that smell w' Paige lately. She is on some meds for her kidneys, Pyridoxine. Maybe that means its working!!:D
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Micky,
I'm glad the shots are at least half as often. Did she get used to them? Breast fed babies always have angel breath and even their poop doesn't smell much worse than yogurt, until they eat other foods. That's one strong incentive for new mothers to nurse, if they can! I don't think it's weird that you like to take wiffs of Katies sweet breath. I'm like that too. But, I even like puppy breath! I've smelled that gross mothball smell too. It goes hand in hand with the acetone breath. I don't look forward to changing those big boy diapers! One reason Aidan smells better these days is he's weaned off of all meds now. He is mostly doing better too, but I do live in fear, with Diastat on hand. We are scheduling a new VEEG and this one will last until every possible seizure type is captured. The neuro and I want to get a total diagnosis. He then thinks we should try new meds, but I don't. They're all poison for his delicate constitution. I would rather go straight to VNS. Does anyone consider if Jake could still be helped by shots? Or are they always just a short term treatment during the brain's most rapid growth? Hope you're feeling better. It sounds more like food poisoning to me. Heather |
Oh, I'm sorry. I also forgot to ask how Megan is doing. Is she on new meds?
My Amber is now on Abilfy sp? and she likes it better than any of the others. I keep my fingers crossed that this one keeps working for her. She's only stable when she's on meds. |
So glad you brought this up. Ava gets this metallicy smell to her. Whn she has a status episode, her breath smells very matallicy. Sometimes her stools smell this way too. And other times it is her gas that smells this way. I cannot help but wonder if it is somehow related to seizures... cause or symptom.
I too wonder about something metabolic. |
wondering about son
Should i go to the doc?
My two (almost three) year old suddenly has urine that smells like maple syrup and has completely regressed in terms of potty training. His brother, when an infant, had constant maple syrup smelling urine, and a host of other things, like developmental delays and delayed speech. Strangely enough the delays cleared up when we put him on the GF diet, adn the maple syrup urine seems to have resolved. Both boys have celiac disease. |
Jake and Katie's Mom (Micky), who started this thread, is now going by J&K mom over there. I'm the same here and there. I don't know much about maple syrup disease, but off the top of my head, I'd say YES. Go to the doctor and get him checked out ASAP. Also, if you don't already know, there is a Gluten Sensitivity / Celiac Disease forum here Here: http://forums.braintalk2.org/forumdisplay.php?f=13 Unlike the Child Neurology group, most of the GS / CD folks are staying here for the time being, although some are posting in both places. If original BrainTalk brings back all the "lost" data / research from before the crash, they'll probably head back. The GS / CD folks are very research oriented. Lots of good data. Feel free to browse both and cross-post any questions you may have. We're GF, also, but we don't have Celiac. |
What is MMA? is it a metabolic disorder also?
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hi landon's mom and welcome to NeuroTalk.
i beleive Jake & Katies Mom was refering to methylmalonic acidemia. here is link that tells about it. http://ghr.nlm.nih.gov/condition=met...00BCF2A047A402 |
THis is a great place and many of us here like it just fine.
I don't go to the old braintalk because I can't post. So I'm Here. And I'm Donna, and my son is Derrick, he is 15 and has seizrues. He also has some odd smell's but can't really tell you why or what exactly. I've just always thought they were part of him. If you have any really creative ways to hide them, and keep them hidden let us know. Derrick takes 3 different seizure meds, and has the vns. And also takes seroquel and zrytek. So its a guessing game as to what causes his problems. Also does anyone know of a good acne remedy that isn't a expensive one, prescription that the isn't retin A, or just wont stop working a few months later. Nothing works. Donna |
hi donna
my son is 17. plays sports. so keeping his skin clean is real important. as it is to my 12 yr old daughter. what has worked the best to keep their skin clear is washing with johnson and johnson baby soap. the liquid. just like for babies. it doesn't strip the skin of the natural oils. ph balanced. they will use a q-tip to dot on benzoyl peroxide cream. like clearisil if they notice a blackhead or pimple starting. neosporine works well to heal too. it can take awhile to notice a difference. just have to keep at it. changing pillow cases every couple of days is a must too. both have the strydex pads in the lockers at school and gym bags to freshen up during the day. they are also on a good vitamin routine. lots of water. neither drink sodas. ( they may sound like fanatics over this...but my daughter is trying to get into modeloing and sings already..my son has done 2 spots in the crowd on tv shows that got filmed here...plus as you know...the teenage thing....) i had done all the rx stuff with my oldest. it seemed to make matters worse. plus the cost. we also tried proactive for 6 months. didn't phase it at all. |
Thanks Curious
Ive posted you twice and my antivirus isnt liking it so Ill be back Donna |
I'm going to make my post a new htread...don't want to hyjack this one. :o
i hope your virus protection lets you post latter. |
Just an aside about odours, Keto, and Carnitine.
http://www.mynchen.demon.co.uk/Ketog.../Carnitine.htm Quote:
Quote:
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I knew i seen this post somewhere. Megan's skin will smell like syrup my mom says, I say it smells like a sweet smell also. We will sit and smell her cheeks and face area at times to try and pin point the smell. We often wonder what it is? Urine, Megs used to smell like bacon. Pretty funky.
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sweet smell urine, don't like milk, yellow skin observed etc
Hello, really concerened abot my sis in law baby who i am taking care for 2 days now bcause she was admitted to hospital, anyway, i realised that he has a swet smelling nappy, which under carefull examination has a thin brown lining around the concentration of urine. apart from this, he does not really drink milk, altho likes water, had no bowel movement in 2 days, doesnt appear onstipated, has mild eczema, and someone thought that his skin is a bit yellow (him being an asian boy) but eyes are not yellow, altho has grey streaks on both eyes. he has always been a 'difficult infant', refusing to drink milk, and has sleeping problems. i am worried, and by reading some of the posts, it really could be sth wrong inside. please help with suggestions
shai. |
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