RE: Re: Carnitine?

December 30, 2010

Thanks ,The problem is that I feel like I'm "dipping my big toe" as you say, into too many things, and I feel like I'm getting nowhere sometimes. After reading the link that Cheryl posted for me about carnitine deficiency, I have not been able to stop crying since. It sounds like what my daughter has, and the words 'possible sudden death' were a little much for me (not blaming Cheryl for posting this - it is actually very helpful info that I will bring up at our dr appt). There is just too much info sometimes. It is so overwhelming. I guess I'm still kind of new to all of this (even though I have been searching for answers since the twins were 6 months old). I just feel like every day I am going down a new road. Some new info presents itself and yet another sleepless night results. I really appreciate everyone's help and advice. It's just hard. I have been told by multiple drs that we should just wait and see - this stuff can happen for no reason at all. But that mother's intuition is a very real thing and it keeps coming back to haunt me. I have never wanted so badly to be proven wrong - to be told I am a paranoid freak (which I am told pretty regularly anyway). But almost every one of my fears keep coming true. I guess I just have to keep going with the supplements and the dr appts until I get to the end. I just need some reassurance that the 'end' actually exists. I guess that's what we all need. Sorry - just venting. Rough night.- Kirk-To: mb12 valtrex From: laurargoddin@...Date: Fri, 31 Dec 2010 03:32:03 +0000Subject: Re: Carnitine?

Hair loss can be explained by anemia (like comes out in clumps) and in a hormonal imbalance. (that happened to me at 8 and it grew back that summer - Ped told my Mom that I was under extreme stress)

Everything else sounds like my brother Rob - low muscle tone, pica, food sensitivities, big head (enlarged head - could be encephalitis? due to viral) and odd breath smell (does it smell like licorice/garlic? don't laugh..) -- these were all things that were noted when he was born up to 3 years when they diagnosed him Autism PDD-NOS.

Is your child very pale? And have eyesight issues (myopic?)...

Rob's test's came back with high/normal B12, yet he had all the deficiency signs. (He's 26 now) -- Now, since the diet and everything else - he's severely deficient - in like everything (which means, we are finally getting some things right!) and he started losing fat and keeping his muscle....

A great book I just read "Could it be B12, an Epidemic of a misdiagnosis." Has a whole chart of what it could be and how to treat it...really great information.

http://www.amazon.com/Could-Be-B12-Epidemic-Misdiagnoses/dp/1884956467

The nasal spray worked wonders on him too. I think it works better than the shots now (he's been on shots for about 3 months).

We used MRM's L-Carnitine w/COQ10 (not great ingredients) and this is what finally got his B12 to show that he was deficient, and he made huge strides. (His B12 was just hanging out in his blood, not really doing what it was supposed to do, because it lacked transport) - we tried other brands, but this one worked well for him.

Because Rob is such an anomaly, I have been looking into other therapies that I think might benefit him (mega-nutrients thru juicing, Gerson Therapy for Cancer patients - it doesn't take much to dip your big toe in the pool of info there and see if it's something that might benefit your baby.)

I hope this helps.

laura

>

> Hi,

>

> Here I am completely confused again. One of my twins who has low tone, GCS sensitivities, leaky gut (I think), had blood work done a while back. I got a call a few days ago from the children's hospital that some of her blood work came back 'abnormal'. I know one of the tests she mentioned was carnitine. Now they are sending her to a metabolic specialist. Can anyone tell me what an abnormal carnitine test could mean?

>

> A little background - had mild pica as a one-two year old (ate dirt, rocks, moss). Has gluten, casein and soy sensitivities. Supposedly has inflammation, malabsorbtion, leaky gut. Has a lot of hair on back and legs (I keep being told that this is nothing but there has to be something to it - my husband and I are not hairy people). She also lost quite a bit of hair around the same time that she had the pica (you could see her scalp). The only other things that have been brought to my attention are that she is extremely low tone, has unusually high B12 levels, has a larger than normal head size, and at times has an odd breath smell (we have ruled out diabetes and hypoglycemia).

>

> Sorry for the long e-mail. We have been to specialist after specialist and now we have to go to this metabolic specialist (who we already saw and who totally blew us off the first time). I just wanted to see if anyone here could shed some light on what might be going on because the doctors can't seem to get on the same page and piece together this puzzle. Thanks for any advice or info.

>

December 30, 2010

Thanks ,The problem is that I feel like I'm "dipping my big toe" as you say, into too many things, and I feel like I'm getting nowhere sometimes. After reading the link that Cheryl posted for me about carnitine deficiency, I have not been able to stop crying since. It sounds like what my daughter has, and the words 'possible sudden death' were a little much for me (not blaming Cheryl for posting this - it is actually very helpful info that I will bring up at our dr appt). There is just too much info sometimes. It is so overwhelming. I guess I'm still kind of new to all of this (even though I have been searching for answers since the twins were 6 months old). I just feel like every day I am going down a new road. Some new info presents itself and yet another sleepless night results. I really appreciate everyone's help and advice. It's just hard. I have been told by multiple drs that we should just wait and see - this stuff can happen for no reason at all. But that mother's intuition is a very real thing and it keeps coming back to haunt me. I have never wanted so badly to be proven wrong - to be told I am a paranoid freak (which I am told pretty regularly anyway). But almost every one of my fears keep coming true. I guess I just have to keep going with the supplements and the dr appts until I get to the end. I just need some reassurance that the 'end' actually exists. I guess that's what we all need. Sorry - just venting. Rough night.- Kirk-To: mb12 valtrex From: laurargoddin@...Date: Fri, 31 Dec 2010 03:32:03 +0000Subject: Re: Carnitine?

Hair loss can be explained by anemia (like comes out in clumps) and in a hormonal imbalance. (that happened to me at 8 and it grew back that summer - Ped told my Mom that I was under extreme stress)

Everything else sounds like my brother Rob - low muscle tone, pica, food sensitivities, big head (enlarged head - could be encephalitis? due to viral) and odd breath smell (does it smell like licorice/garlic? don't laugh..) -- these were all things that were noted when he was born up to 3 years when they diagnosed him Autism PDD-NOS.

Is your child very pale? And have eyesight issues (myopic?)...

Rob's test's came back with high/normal B12, yet he had all the deficiency signs. (He's 26 now) -- Now, since the diet and everything else - he's severely deficient - in like everything (which means, we are finally getting some things right!) and he started losing fat and keeping his muscle....

A great book I just read "Could it be B12, an Epidemic of a misdiagnosis." Has a whole chart of what it could be and how to treat it...really great information.

http://www.amazon.com/Could-Be-B12-Epidemic-Misdiagnoses/dp/1884956467

The nasal spray worked wonders on him too. I think it works better than the shots now (he's been on shots for about 3 months).

We used MRM's L-Carnitine w/COQ10 (not great ingredients) and this is what finally got his B12 to show that he was deficient, and he made huge strides. (His B12 was just hanging out in his blood, not really doing what it was supposed to do, because it lacked transport) - we tried other brands, but this one worked well for him.

Because Rob is such an anomaly, I have been looking into other therapies that I think might benefit him (mega-nutrients thru juicing, Gerson Therapy for Cancer patients - it doesn't take much to dip your big toe in the pool of info there and see if it's something that might benefit your baby.)

I hope this helps.

laura

>

> Hi,

>

> Here I am completely confused again. One of my twins who has low tone, GCS sensitivities, leaky gut (I think), had blood work done a while back. I got a call a few days ago from the children's hospital that some of her blood work came back 'abnormal'. I know one of the tests she mentioned was carnitine. Now they are sending her to a metabolic specialist. Can anyone tell me what an abnormal carnitine test could mean?

>

> A little background - had mild pica as a one-two year old (ate dirt, rocks, moss). Has gluten, casein and soy sensitivities. Supposedly has inflammation, malabsorbtion, leaky gut. Has a lot of hair on back and legs (I keep being told that this is nothing but there has to be something to it - my husband and I are not hairy people). She also lost quite a bit of hair around the same time that she had the pica (you could see her scalp). The only other things that have been brought to my attention are that she is extremely low tone, has unusually high B12 levels, has a larger than normal head size, and at times has an odd breath smell (we have ruled out diabetes and hypoglycemia).

>

> Sorry for the long e-mail. We have been to specialist after specialist and now we have to go to this metabolic specialist (who we already saw and who totally blew us off the first time). I just wanted to see if anyone here could shed some light on what might be going on because the doctors can't seem to get on the same page and piece together this puzzle. Thanks for any advice or info.

>

December 30, 2010

Thanks ,The problem is that I feel like I'm "dipping my big toe" as you say, into too many things, and I feel like I'm getting nowhere sometimes. After reading the link that Cheryl posted for me about carnitine deficiency, I have not been able to stop crying since. It sounds like what my daughter has, and the words 'possible sudden death' were a little much for me (not blaming Cheryl for posting this - it is actually very helpful info that I will bring up at our dr appt). There is just too much info sometimes. It is so overwhelming. I guess I'm still kind of new to all of this (even though I have been searching for answers since the twins were 6 months old). I just feel like every day I am going down a new road. Some new info presents itself and yet another sleepless night results. I really appreciate everyone's help and advice. It's just hard. I have been told by multiple drs that we should just wait and see - this stuff can happen for no reason at all. But that mother's intuition is a very real thing and it keeps coming back to haunt me. I have never wanted so badly to be proven wrong - to be told I am a paranoid freak (which I am told pretty regularly anyway). But almost every one of my fears keep coming true. I guess I just have to keep going with the supplements and the dr appts until I get to the end. I just need some reassurance that the 'end' actually exists. I guess that's what we all need. Sorry - just venting. Rough night.- Kirk-To: mb12 valtrex From: laurargoddin@...Date: Fri, 31 Dec 2010 03:32:03 +0000Subject: Re: Carnitine?

Hair loss can be explained by anemia (like comes out in clumps) and in a hormonal imbalance. (that happened to me at 8 and it grew back that summer - Ped told my Mom that I was under extreme stress)

Everything else sounds like my brother Rob - low muscle tone, pica, food sensitivities, big head (enlarged head - could be encephalitis? due to viral) and odd breath smell (does it smell like licorice/garlic? don't laugh..) -- these were all things that were noted when he was born up to 3 years when they diagnosed him Autism PDD-NOS.

Is your child very pale? And have eyesight issues (myopic?)...

Rob's test's came back with high/normal B12, yet he had all the deficiency signs. (He's 26 now) -- Now, since the diet and everything else - he's severely deficient - in like everything (which means, we are finally getting some things right!) and he started losing fat and keeping his muscle....

A great book I just read "Could it be B12, an Epidemic of a misdiagnosis." Has a whole chart of what it could be and how to treat it...really great information.

http://www.amazon.com/Could-Be-B12-Epidemic-Misdiagnoses/dp/1884956467

The nasal spray worked wonders on him too. I think it works better than the shots now (he's been on shots for about 3 months).

We used MRM's L-Carnitine w/COQ10 (not great ingredients) and this is what finally got his B12 to show that he was deficient, and he made huge strides. (His B12 was just hanging out in his blood, not really doing what it was supposed to do, because it lacked transport) - we tried other brands, but this one worked well for him.

Because Rob is such an anomaly, I have been looking into other therapies that I think might benefit him (mega-nutrients thru juicing, Gerson Therapy for Cancer patients - it doesn't take much to dip your big toe in the pool of info there and see if it's something that might benefit your baby.)

I hope this helps.

laura

>

> Hi,

>

> Here I am completely confused again. One of my twins who has low tone, GCS sensitivities, leaky gut (I think), had blood work done a while back. I got a call a few days ago from the children's hospital that some of her blood work came back 'abnormal'. I know one of the tests she mentioned was carnitine. Now they are sending her to a metabolic specialist. Can anyone tell me what an abnormal carnitine test could mean?

>

> A little background - had mild pica as a one-two year old (ate dirt, rocks, moss). Has gluten, casein and soy sensitivities. Supposedly has inflammation, malabsorbtion, leaky gut. Has a lot of hair on back and legs (I keep being told that this is nothing but there has to be something to it - my husband and I are not hairy people). She also lost quite a bit of hair around the same time that she had the pica (you could see her scalp). The only other things that have been brought to my attention are that she is extremely low tone, has unusually high B12 levels, has a larger than normal head size, and at times has an odd breath smell (we have ruled out diabetes and hypoglycemia).

>

> Sorry for the long e-mail. We have been to specialist after specialist and now we have to go to this metabolic specialist (who we already saw and who totally blew us off the first time). I just wanted to see if anyone here could shed some light on what might be going on because the doctors can't seem to get on the same page and piece together this puzzle. Thanks for any advice or info.

>

December 30, 2010

I got shivers reading your post...I know exactly where you are...I cried a lot and when I heard nothing from the Dr.'s and nothing but "poor parenting" and then "slightly mentally retarded" -- it's not a good place. It's a place of uncertainty, and limbo. I call it "hell." Here's the good news. If you believe it's hopeless, it is. And I don't think you believe that. (that's the good news part.) Wait and see doesn't work. Your intuition works well. People offer you only what they can -meaning from experience or if they happen across something and it sounds like you. You know what they say about "paranoia?" -- Total situational awareness. Love that saying. I love paranoid people, keeps me on my toes and

looking...I don't think there is only one way to win, I think there are several, I am just a person that likes straight lines -- it's the fastest way to the finish line. Which is why I am always looking. I am not a 'stop and smell the roses' kind of girl...or 'skipping thru the lillies" either, if I'm not getting results, I'm moving on...and I don't like repeating stuff over and over and over...it's insanity - (repeating the same thing over and over expecting a different result). Hell, I think it was Einstein that said "if we knew what we were doing, they wouldn't call it re-search." I am sorry you are having a rough night...I know what those are. I take my B12, and L-Theanine (thanks to the posters on this board) along with my B Complex (stress formula) ...and I'm like "I'm in it for the long haul.." Bring it. There have been days that I wanted to quit...throw myself down on the floor and just give

up (wish for a non painful death)...apparently, the ride isn't over, because I am still here..so, I'll be here and you'll be here, and the rest of us will be here, until here isn't a place we need to be anymore. So, when you feel like you need a hand, take mine..I've got two. Hang in there...Take an inventory of what you've got, and then see where you need to be...laura (hugs, big one!)To: mb12 valtrex Sent: Thu, December 30, 2010 10:02:27 PMSubject: RE: Re: Carnitine?

Thanks ,The problem is that I feel like I'm "dipping my big toe" as you say, into too many things, and I feel like I'm getting nowhere sometimes. After reading the link that Cheryl posted for me about carnitine deficiency, I have not been able to stop crying since. It sounds like what my daughter has, and the words 'possible sudden death' were a little much for me (not blaming Cheryl for posting this - it is actually very helpful info that I will bring up at our dr appt). There is just too much info sometimes. It is so overwhelming. I guess I'm still kind of new to all of this (even though I have been searching for answers since the twins were 6 months old). I just feel like every day I am going down a new road. Some new info presents itself and yet another sleepless night results. I really appreciate everyone's help and advice. It's just hard. I have been told by multiple drs that we should just wait and see - this stuff can happen for no

reason at all. But that mother's intuition is a very real thing and it keeps coming back to haunt me. I have never wanted so badly to be proven wrong - to be told I am a paranoid freak (which I am told pretty regularly anyway). But almost every one of my fears keep coming true. I guess I just have to keep going with the supplements and the dr appts until I get to the end. I just need some reassurance that the 'end' actually exists. I guess that's what we all need. Sorry - just venting. Rough night.- Kirk-To: mb12 valtrex From: laurargoddin@...Date: Fri, 31 Dec 2010 03:32:03 +0000Subject: Re: Carnitine?

Hair loss can be explained by anemia (like comes out in clumps) and in a hormonal imbalance. (that happened to me at 8 and it grew back that summer - Ped told my Mom that I was under extreme stress)

Everything else sounds like my brother Rob - low muscle tone, pica, food sensitivities, big head (enlarged head - could be encephalitis? due to viral) and odd breath smell (does it smell like licorice/garlic? don't laugh..) -- these were all things that were noted when he was born up to 3 years when they diagnosed him Autism PDD-NOS.

Is your child very pale? And have eyesight issues (myopic?)...

Rob's test's came back with high/normal B12, yet he had all the deficiency signs. (He's 26 now) -- Now, since the diet and everything else - he's severely deficient - in like everything (which means, we are finally getting some things right!) and he started losing fat and keeping his muscle....

A great book I just read "Could it be B12, an Epidemic of a misdiagnosis." Has a whole chart of what it could be and how to treat it...really great information.

http://www.amazon.com/Could-Be-B12-Epidemic-Misdiagnoses/dp/1884956467

The nasal spray worked wonders on him too. I think it works better than the shots now (he's been on shots for about 3 months).

We used MRM's L-Carnitine w/COQ10 (not great ingredients) and this is what finally got his B12 to show that he was deficient, and he made huge strides. (His B12 was just hanging out in his blood, not really doing what it was supposed to do, because it lacked transport) - we tried other brands, but this one worked well for him.

Because Rob is such an anomaly, I have been looking into other therapies that I think might benefit him (mega-nutrients thru juicing, Gerson Therapy for Cancer patients - it doesn't take much to dip your big toe in the pool of info there and see if it's something that might benefit your baby.)

I hope this helps.

laura

>

> Hi,

>

> Here I am completely confused again. One of my twins who has low tone, GCS sensitivities, leaky gut (I think), had blood work done a while back. I got a call a few days ago from the children's hospital that some of her blood work came back 'abnormal'. I know one of the tests she mentioned was carnitine. Now they are sending her to a metabolic specialist. Can anyone tell me what an abnormal carnitine test could mean?

>

> A little background - had mild pica as a one-two year old (ate dirt, rocks, moss). Has gluten, casein and soy sensitivities. Supposedly has inflammation, malabsorbtion, leaky gut. Has a lot of hair on back and legs (I keep being told that this is nothing but there has to be something to it - my husband and I are not hairy people). She also lost quite a bit of hair around the same time that she had the pica (you could see her scalp). The only other things that have been brought to my attention are that she is extremely low tone, has unusually high B12 levels, has a larger than normal head size, and at times has an odd breath smell (we have ruled out diabetes and hypoglycemia).

>

> Sorry for the long e-mail. We have been to specialist after specialist and now we have to go to this metabolic specialist (who we already saw and who totally blew us off the first time). I just wanted to see if anyone here could shed some light on what might be going on because the doctors can't seem to get on the same page and piece together this puzzle. Thanks for any advice or info.

>

December 30, 2010