Carnitor odor, is there anything OTC for it

February 5, 2005

Is there anything OTC to get rid of the fishy odor from Carnitor? I know there is the prescriptions something or other, I just frankly don't want to deal with a million phonecalls to get it. Grace really only gets the smell when she sweats, and due to her heat intolerance she rarely can get an opportunity to get warm enough to sweat.

O.K this is strange but I just gotta share this with you guys. Grace actually got overheated today from PLAYING IN THE SNOW!!! Granted it was warmer today (about 45 F) but she was sledding with the other kids and just being a two year old in the snow. She did not even have on her coat, only a sweatshirt, gloves, boots and a hat. Anyways she came inside with red (hot) cheeks and sweaty (thats what made me remember to ask about the smell ). She also kept telling me that she was hot. We have been having alot of problems keeping her comfortable in the car this winter. Obviously I need to make her wear a coat, but she only uses a fleece lined fall coat, and she is getting overheated in the car with the heat on. It has been really hard because she just gets too hot and then starts to open her windows, wich would be fine if we did not also have a 4 month old in the car. I have been letting her take her coat off in the car, but I am afraid she may get sick from all the temperature changes so quickly. Does anyone have any advice on this one? Honestly, Dr. Cohen was even stumped by this.

Thanks to all, for all you do.

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February 5, 2005

Is there anything OTC to get rid of the fishy odor from Carnitor? I know there is the prescriptions something or other, I just frankly don't want to deal with a million phonecalls to get it. Grace really only gets the smell when she sweats, and due to her heat intolerance she rarely can get an opportunity to get warm enough to sweat.

O.K this is strange but I just gotta share this with you guys. Grace actually got overheated today from PLAYING IN THE SNOW!!! Granted it was warmer today (about 45 F) but she was sledding with the other kids and just being a two year old in the snow. She did not even have on her coat, only a sweatshirt, gloves, boots and a hat. Anyways she came inside with red (hot) cheeks and sweaty (thats what made me remember to ask about the smell ). She also kept telling me that she was hot. We have been having alot of problems keeping her comfortable in the car this winter. Obviously I need to make her wear a coat, but she only uses a fleece lined fall coat, and she is getting overheated in the car with the heat on. It has been really hard because she just gets too hot and then starts to open her windows, wich would be fine if we did not also have a 4 month old in the car. I have been letting her take her coat off in the car, but I am afraid she may get sick from all the temperature changes so quickly. Does anyone have any advice on this one? Honestly, Dr. Cohen was even stumped by this.

Thanks to all, for all you do.

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February 6, 2005

,

I typically put the twins in the car without a coat on (I warm it up first, it time permits) then put the coat on before we go outside. If it's really cold (or I don't have time to warm the car up), I wrap them up in a blanket when putting them in. My other suggestion might be bundling your little one up a little more and making it cooler in the car.

got overheated this week also. We went to see Dora the Explorer Live and walked about 3 blocks outside (the temp was around 50.) I had the girls in a hooded sweatshirt and t-shit underneath and when we got to a restaurant for lunch, fell down and went limp. I thought for sure she was having a "big one" but, she was just overheated and came back around after I stripped her down to her t-shirt. It's amazing how fragile our kids can be--even in the winter!!!

I hope you find something that works for Grace. I'm glad she was able to go out sledding! I'm sure she had a blast.

Kim - Mom to and Lindsey -3 Partial Complex I

Carnitor odor, is there anything OTC for it

Is there anything OTC to get rid of the fishy odor from Carnitor? I know there is the prescriptions something or other, I just frankly don't want to deal with a million phonecalls to get it. Grace really only gets the smell when she sweats, and due to her heat intolerance she rarely can get an opportunity to get warm enough to sweat.

O.K this is strange but I just gotta share this with you guys. Grace actually got overheated today from PLAYING IN THE SNOW!!! Granted it was warmer today (about 45 F) but she was sledding with the other kids and just being a two year old in the snow. She did not even have on her coat, only a sweatshirt, gloves, boots and a hat. Anyways she came inside with red (hot) cheeks and sweaty (thats what made me remember to ask about the smell ). She also kept telling me that she was hot. We have been having alot of problems keeping her comfortable in the car this winter. Obviously I need to make her wear a coat, but she only uses a fleece lined fall coat, and she is getting overheated in the car with the heat on. It has been really hard because she just gets too hot and then starts to open her windows, wich would be fine if we did not also have a 4 month old in the car. I have been letting her take her coat off in the car, but I am afraid she may get sick from all the temperature changes so quickly. Does anyone have any advice on this one? Honestly, Dr. Cohen was even stumped by this.

Thanks to all, for all you do.

Organize your inbox and send incoming messages to specific folders. Learn more! Please contact mito-owner with any problems or questions.

February 6, 2005

,

I typically put the twins in the car without a coat on (I warm it up first, it time permits) then put the coat on before we go outside. If it's really cold (or I don't have time to warm the car up), I wrap them up in a blanket when putting them in. My other suggestion might be bundling your little one up a little more and making it cooler in the car.

got overheated this week also. We went to see Dora the Explorer Live and walked about 3 blocks outside (the temp was around 50.) I had the girls in a hooded sweatshirt and t-shit underneath and when we got to a restaurant for lunch, fell down and went limp. I thought for sure she was having a "big one" but, she was just overheated and came back around after I stripped her down to her t-shirt. It's amazing how fragile our kids can be--even in the winter!!!

I hope you find something that works for Grace. I'm glad she was able to go out sledding! I'm sure she had a blast.

Kim - Mom to and Lindsey -3 Partial Complex I

Carnitor odor, is there anything OTC for it

Is there anything OTC to get rid of the fishy odor from Carnitor? I know there is the prescriptions something or other, I just frankly don't want to deal with a million phonecalls to get it. Grace really only gets the smell when she sweats, and due to her heat intolerance she rarely can get an opportunity to get warm enough to sweat.

O.K this is strange but I just gotta share this with you guys. Grace actually got overheated today from PLAYING IN THE SNOW!!! Granted it was warmer today (about 45 F) but she was sledding with the other kids and just being a two year old in the snow. She did not even have on her coat, only a sweatshirt, gloves, boots and a hat. Anyways she came inside with red (hot) cheeks and sweaty (thats what made me remember to ask about the smell ). She also kept telling me that she was hot. We have been having alot of problems keeping her comfortable in the car this winter. Obviously I need to make her wear a coat, but she only uses a fleece lined fall coat, and she is getting overheated in the car with the heat on. It has been really hard because she just gets too hot and then starts to open her windows, wich would be fine if we did not also have a 4 month old in the car. I have been letting her take her coat off in the car, but I am afraid she may get sick from all the temperature changes so quickly. Does anyone have any advice on this one? Honestly, Dr. Cohen was even stumped by this.

Thanks to all, for all you do.

Organize your inbox and send incoming messages to specific folders. Learn more! Please contact mito-owner with any problems or questions.

February 6, 2005

I was told one of the reasons Asenath was put on B2 was to help

eliminate the fishy odor " in case " it should happen. One thing I have

noticed though is that often the odor is emitted when the child either isn't

utilizing the Carnitor properly in the body OR their level is already higher

and they don't need as much of the Carnitor at that point. Sometimes just

lowering the level of Carnitor for a few days (or lower) will help rid the

odor. It depends WHY the smell is ocurring and only doing the labs will

indicate the reason for sure.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Carnitor odor, is there anything OTC for it

Is there anything OTC to get rid of the fishy odor from Carnitor? I know

there is the prescriptions something or other, I just frankly don't want to

deal with a million phonecalls to get it. Grace really only gets the smell

when she sweats, and due to her heat intolerance she rarely can get an

opportunity to get warm enough to sweat.

O.K this is strange but I just gotta share this with you guys. Grace

actually got overheated today from PLAYING IN THE SNOW!!! Granted it was

warmer today (about 45 F) but she was sledding with the other kids and just

being a two year old in the snow. She did not even have on her coat, only a

sweatshirt, gloves, boots and a hat. Anyways she came inside with red (hot)

cheeks and sweaty (thats what made me remember to ask about the smell ).

She also kept telling me that she was hot. We have been having alot of

problems keeping her comfortable in the car this winter. Obviously I need

to make her wear a coat, but she only uses a fleece lined fall coat, and she

is getting overheated in the car with the heat on. It has been really hard

because she just gets too hot and then starts to open her windows, wich

would be fine if we did not also have a 4 month old in the car. I have been

letting her take her coat off in the car, but I am afraid she may get sick

from all the temperature changes so quickly. Does anyone have any advice on

this one? Honestly, Dr. Cohen was even stumped by this.

Thanks to all, for all you do.

--------------------------------------------------------------------------------

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Please contact mito-owner with any problems or questions.

February 6, 2005