Metallic smell to breath, gas and stools ... any thoughts?

[Mom2Ava]

Hi guys. My DD does not have ASD, but her EEG abnormalities supposedly puts her at risk.
She is left hemi w/ epilepsy and a very active EEG.
Anyway, last spring she began having this odd metallic smell to her stools, gas and breath (We smell them, not her).
she only has it to her breath when she has a seizure. She also has metallic gas during a seizure.
As far as stools, she seems to have a metallic odor the days surrounding the siezures.
She does not have typical seizures. Usually her seizures are status epilepticus ( mostly nonconvulsive CP but occasionally convulsive TC)
She was admitted to MGH this past week. We spoke to a couple of docs that are metabolic specialists. Nothing jumped out at them but had a couple of thoughts.
She does have some low CO2 levels, low carnitine, but those are most likely diet related they think. She is on a low glycemic index treatment.
Last spring she had a hair analysis done. Had several high levels of heavy metals and low minerals. Showed the results to the pedi, but she did not seem concerned about this.
i worry thiere is some underlying problem with my daughter that is contributing to her status epilepticus episodes... other than the injury she has. In fact, I wonder if this underlying issue may have been a contributing factor to the initial stoke.

So does anyone have any thoughts on what this metallic smell could be?

Thanks,

Jen

[NaughtyMouse]

...She is on a low glycemic index treatment...
Could it be ketones? I would think that 'metabolic specialists' would have picked up on that, so it's probably unlikely. But it's simple to rule out by testing the urine - I think that test strips can be purchased over the counter at a pharmacy.

x<BO~

[Keggy]

My dh has a metallic smell when his blood sugar is way off (diabetes). I would have thought they would check that first though.

[Mom2Ava]

Hi guys. Ava is or was in slight ketosis from thediet, but the smell is not a smell of ketosis. Also the smell began BEFORE the diet. But it was something we had looked into.
The metabolic specialist did mention sometimes homocystine levels will cause an off smell and we will check those levels soon.
In terms of sugar ... i had wondered that too, but her sugar is checked whenever she has a prolonged seizure that requires ER visits.
One of the reasons I came here to you guys, is that I saw on a couple of the autism forums ( ones I am not all that familiar with) that kids going through chelation have a metallic smell to them or their poop.
I do wonder if Ava's high metals have anything to do with anything.
Is she some how trying to get rid of those metals and the process is trigger seizures some how?

I don't know ... but smells are just so hard to ignore.

[Lara]

Hi Mom2Ava,
Some vitamins and medications might affect the body that way. What medications and/or vitamins is she taking?
Does your daughter get a metallic taste as well, or is it only in her body odour? What exactly does it smell like? Does it smell like ammonia or sulphur or something different?

Edited to add: I've been looking for some of the old posts. I've seen this mentioned before on older versions of this forum. Unfortunately it's becoming increasingly difficult to find all that lost information. I recall dkw and aka talking about this odour problem on several different forums here in the past. If I do find something relevant, I'll post it.

[Lara]

She does have some low CO2 levels, low carnitine, but those are most likely diet related they think. She is on a low glycemic index treatment.Jen

Me again. I was just thinking about the low carnitine.
Has it always been low or is that low carnitine related to any medications she's taking? I'm not 100 % sure about something when you say low glycemic index treatment... is that ketogenic diet? I was looking at a lot of the info. online about how taking L-Carnitine can actually cause a particular type of body odour, so wondered if she was being given carnitine supplements?

You probably know all this, but I'll post it anyway...
Plasma carnitine levels are decreased in many people with epilepsy. This carnitine deficiency may result from nutritional factors, underlying metabolic disorders, or the effects of drugs and diseases, alone or in combination. Plasma levels are usually lowest in people taking a combination of valproate with other anti-epileptic drugs (AEDs) such as phenobarbital, phenytoin or carbamazepine (valproate polypharmacy), though taking valproate alone or other AEDs alone may sometimes cause a deficiency. Studies suggest that a young age and multiple disabilities may be risk factors for carnitine deficiency as well.
http://epilepsyontario.org/client/EO/EOWeb.nsf/web/Carnitine

[Mom2Ava]

Cally, when you say success, what type of success have you seen. I do want to learn more about the protocl. Dr Amy is actually only 20 minutes from where I live, but I have heard there is a waiting list of several years to be able to see her.

Does your DD have seizures or spike and wave EEG?

Lara, we have only seen low carnitine since she has been on the diet, but as far as I know she has never been tested before then. Her CO2 levels have been low even before the diet. LGI is a modified Keto ... very simular to the Atkins diet ( which is also used to treat epilpesy).
Ava is nto on carnitine supps but will be if her levels continue to be low. No, she is not on depakote ... one of the other causes of low carnitine.
She is on 75 mg of Lamictal BID.

This is what the odor smells like. If you held coins tighly in a sweaty palm... that is what it smells like to me.

I am not sure if she smells it too ... she is only 2 and has not communicated as much.
The smell is too her gas, stools and sometimes breath. Most commonly her stools.

Thanks for your help.

[callyflower]

Hi,

No, my dd does not have seizures, but high functioning autism. She is 9 and over 90% recovered. I started Yasko in an attempt to get "the whole enchilada." Ran the genetic testing in May and got a few surprises with that so began supporting her body as indicated by the testing. Organic acid and amino acid tests are improving every month and much to my surprise and delight, metals are flowing out now that her "detox pathways" are properly supported. Aluminum's been the most plentiful and that's something we never saw with all the chelation stuff we've done in the past.

Yes, it is almost fruitless to try and see Yasko as a patient, face to face. However, I would TRY---as she can only tell you "no" and just might say "yes". Coming from a "seizure history" may be more successful than "just autism." Sigh. BTW, the word is there's not even a waiting list anymore; she simply has stopped seeing patients. However, if you run tests through her office she will comment on them and help you along. I don't do that as my insurance is currently paying 100% on my testing and I have made friends with a couple of very knowledgeable women who coach me along the way. The most important thing is to just get on her site and read until your head spins, then step away. Once the spinning stops, go back and read some more. It eventually begins to seem less overwhelming.

I wish I had better answers for you, but I do think Yasko approaches things in a very holistic manner. At the very least, what she recommends will do no harm, and you will probably come away with a much better understanding of the inner workings of your little girl with time, and very possibly some improved function for her.

Hope this helps a tiny bit.

Take care,

Cally

[Mom2Ava]

Thanks Cally. I will definately try to contact her. Ava has life threatening siezures ... so I will try anything to get to the bottom of what is going on .... and yes I do think there is a bottom we have not yet seen.

Just curious, what does you pedi or neuro think of Dr Amy?

[Isabelle]

Searching online the only thing I found was Inborn Errors of Metabolism IEM and some mention unusual odours and carnitine deficiency. According to one study looks like there are 120 of such errors and most of them respond to diet and vitamins.

Sorry I can't be of more help. Did drs made a final diagnosis?

[Mom2Ava]

Isabelle, No final DX made. For now everyone will just keep it on their minds. For me, it is hard not to find the reasons for that smell in case it is trigger her status epilepticius episodes which she has frequently (1 to 4 times per month).
Would you happen to have any of those links on inborn metabolic errors?

[Isabelle]

If you google "inborn errors of metabolism" you get like hundreds sites. I picked this one because has the shortest url
http://web.indstate.edu/thcme/mwking/inborn.html

I hope your doctors find the right dx, so your child can be treated ASAP

[Mom2Ava]

I am not sure there will ever be a defin dx. Right now we know she had a stroke during or before birth. Has regular episodes of status. Has lots of spiking on her EEG in sleep and awake hours.

it is that metallic smell that makes me wonder. I have always know there was more to her issues than just the stroke. In fact I wonder if the underlying issue caused her to be predisposed to the stroke ( along w/ all my preg issues).

Another thing I cannot stop thinking about is that we have a huge family hx of 2nd and 3rd term fetal losses. I can't help but wonder if it is all relevant.

[Isabelle]

Have drs ruled out MoyaMoya disease with a MRI? www.moyamoya.com/