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?

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