Carnitor & Intro, was: electrolytes Re: long-term use of PEG

May 2, 2006

Actually, I am not sure if the Carnitor affects the smooth muscles, but

do know that it tends to cause loose stools and has been very helpful for

some with constipation. Unfortunatly, even with a carnitine deficiency,

our insurance will not cover it (saying it's supplemental) so we've not

been able to see if perhaps it might help with my son's constipation.

I apologize because I realize I've posted this and have not had the

time to introduce myself to the group!!

Briefly, my name is Kass and I am the proud mom to three awesome kids

that all have an unspecified Mitochondrial Disease. All three have

multiple GI issues......Chance has GERD, micro-aspiration syndrome, delayed

(really non-existent almost) small bowel motility, and chronic constipation

of the ascending colon........Madison has dysphagia, GERD, micro-aspiration

syndrome, Cyclic Vomiting Syndrome, delayed stomach emptying, a hiatel

hernia, chronic gastritis, rectal constipation, has had a stomach ache

and nausea daily for a year and a half (more testing happening this week

to see if we can figure out the cause), and has a g-tube primarily for

hydration.........and Abby has severe GERD and delayed stomach emptying.

Chance and Madison have been on Miralax now for 3 years, and while we

have seen some success with it, particularly with Madison, we've been on

a roller coaster ride with Chance. Currently Madison get's 17g every

2-3 days (down from using it daily), while Chance is now on 17g in the

am, 8.5g at lunch, and Dulcolax 4 times a week...all a gradual increase

we have had to make because of continuing lack of control of his constipation.

Some weeks since starting this dose of everything he does "okay", but it

really is a week to week thing and we really do not have true control even

now. He's been on as high as 17g 2 times per day, but this caused

loose stools...when he would finally go!! Wasn't going any more frequently

though.

I joined this list to learn more about both the ill effects of Miralax,

as well as alternatives that we might be able to try. As I am sure

many of you have dealt with, I have a GI (the second one really....the

kids were started on it by a GI at Mayo Clinic and now we're seeing this

one locally) that believes there is no problems with taking miralax daily....or

atleast that the risks outweigh the good. I don't know exactly how

we go against recommendations of the GI and maintain a decent relationship

with her and with so many issues going on, we really need her. Rock

and a hard place if you know what I mean!!!

Anyway, I have already learned alot and while I am still not sure what

we're going to do, atleast I know I am becoming more fully informed.

-- BIG hugs --

Kass, proud mom to Chance (12-Mito), Madison (9-Mito), Abigail (8-Mito)

McNair Family

Updates

Life is not measured by the breaths we take, but by the moments

that take our breath away - Unknown

m w wrote:

T be made only under a physician's direction.

Calcium Magnesium Phosphorus Succinate Creatine

& quot;>Article health wellness</a></tt></td> <td

style= & quot;width:25%; & quot;><tt>"> Ï Carnitor is something

that helps muscle tone and would be worth looking into whether or not it

could help the smooth muscle tone of the GI tract--I do not know if it

could or wouldn't make any difference... since this is from United Mitochondrial

foundation, it's definitely worth taking to your doctor who is treating

you for your dysautonomia and mito problems and asking about. W

May 2, 2006

Hi Kass,

My son is on Carnitor. He never had a Ibs or constipation issue, but SCAD, a metabolic disorder and truthfully I wish I could take him off of it. I believe it has contributed to his hyperness and social issues. They have done a study on carnitor and found that in some kids it actually works like ridalin, but I have heard from other parents that it made their kid hyper and that it is something to start slowly and work up to a larger dose. My daughter was on Miralax for about 4 months inconsistantly. She hates taking medicine and I hate giving it especially the adult doseage they had her on. I always question the doctors and was threatened by one of them that they would replace my PCP. I havent been to any doctors in months because they dont listen. That is military health care for you. Anyway, I am now doing homeopathy with my daughter who is 11 and have been for 3 months and since she has been on her remedy, she has not had chonic stomach pain as she was before. Overall I have seen gains and will continue with homeopathy. My daughter has CAPD, ADD, and IBS. We are also doing a neurodevelopmental program with LInda Kane. I am fed up with doctors. They dont listen and are very narrow minded. Our money pays them and they work for us, but dont tell them that. This is the sort of medical care you can expect to get if we ever get a national health program here. Good luck and I hope I was of some help. Suzanne

Re: Carnitor & Intro, was: electrolytes Re: long-term use of PEG

Actually, I am not sure if the Carnitor affects the smooth muscles, but do know that it tends to cause loose stools and has been very helpful for some with constipation. Unfortunatly, even with a carnitine deficiency, our insurance will not cover it (saying it's supplemental) so we've not been able to see if perhaps it might help with my son's constipation. I apologize because I realize I've posted this and have not had the time to introduce myself to the group!! Briefly, my name is Kass and I am the proud mom to three awesome kids that all have an unspecified Mitochondrial Disease. All three have multiple GI issues......Chance has GERD, micro-aspiration syndrome, delayed (really non-existent almost) small bowel motility, and chronic constipation of the ascending colon........Madison has dysphagia, GERD, micro-aspiration syndrome, Cyclic Vomiting Syndrome, delayed stomach emptying, a hiatel hernia, chronic gastritis, rectal constipation, has had a stomach ache and nausea daily for a year and a half (more testing happening this week to see if we can figure out the cause), and has a g-tube primarily for hydration.........and Abby has severe GERD and delayed stomach emptying. Chance and Madison have been on Miralax now for 3 years, and while we have seen some success with it, particularly with Madison, we've been on a roller coaster ride with Chance. Currently Madison get's 17g every 2-3 days (down from using it daily), while Chance is now on 17g in the am, 8.5g at lunch, and Dulcolax 4 times a week...all a gradual increase we have had to make because of continuing lack of control of his constipation. Some weeks since starting this dose of everything he does "okay", but it really is a week to week thing and we really do not have true control even now. He's been on as high as 17g 2 times per day, but this caused loose stools...when he would finally go!! Wasn't going any more frequently though. I joined this list to learn more about both the ill effects of Miralax, as well as alternatives that we might be able to try. As I am sure many of you have dealt with, I have a GI (the second one really....the kids were started on it by a GI at Mayo Clinic and now we're seeing this one locally) that believes there is no problems with taking miralax daily....or atleast that the risks outweigh the good. I don't know exactly how we go against recommendations of the GI and maintain a decent relationship with her and with so many issues going on, we really need her. Rock and a hard place if you know what I mean!!! Anyway, I have already learned alot and while I am still not sure what we're going to do, atleast I know I am becoming more fully informed. -- BIG hugs -- Kass, proud mom to Chance (12-Mito), Madison (9-Mito), Abigail (8-Mito) McNair Family Updates Life is not measured by the breaths we take, but by the moments that take our breath away - Unknown m w wrote: T be made only under a physician's direction. Calcium Magnesium Phosphorus Succinate Creatine & quot;>Article health wellness</a></tt></td> <td style= & quot;width:25%; & quot;><tt>"> Ï Carnitor is something that helps muscle tone and would be worth looking into whether or not it could help the smooth muscle tone of the GI tract--I do not know if it could or wouldn't make any difference... since this is from United Mitochondrial foundation, it's definitely worth taking to your doctor who is treating you for your dysautonomia and mito problems and asking about. W

May 2, 2006

Hi Kass--I'll put my comments in your text...with *** marks preceding my paragraphs, read thru till you see my signature...Actually, I am not sure if the Carnitor affects the smooth muscles, but do know that it tends to cause loose stools and has been very helpful for some with constipation. **** Thanks for sharing that info--it may help someone else! Unfortunatly, even with a carnitine deficiency, our insurance will not cover it (saying it's supplemental) so we've not been able to see if perhaps it might help with my son's constipation. **** Apparently there is a supplemental form called L-Carnitine, and there is one called Acetyl L Carnitine, but what I do not know is, are they "exactly" the same as carnitor or is carnitor a more effective form of carnitine??? Could be that there is a better effectiveness with the prescription, but you never know. Your child's mito doc might know.

All three have multiple GI issues......Chance has GERD, micro-aspiration syndrome, delayed (really non-existent almost) small bowel motility, and chronic constipation of the ascending colon........ **** OK, read that article I just sent out about the slowing down the gastric emptying... might want to talk to their doc about it and find out if it could be causing the gerd or making it worse, or not. Madison has dysphagia, GERD, micro-aspiration syndrome, Cyclic Vomiting Syndrome, delayed stomach emptying, a hiatel hernia, chronic gastritis, rectal constipation, has had a stomach ache and nausea daily for a year and a half (more testing happening this week to see if we can figure out the cause), and has a g-tube primarily for hydration.........and Abby has severe GERD and delayed stomach emptying. He's been on as high as 17g 2 times per day, but this caused

loose stools...when he would finally go!! Wasn't going any more frequently though. **** yes, that's the thing about miralax and other osmotic laxatives is, it's not really affecting the muscle contractions of the GI tract directly, and so it sounds like for him, he needs a certain "volume" of pressure in order to "get the urge" to go, whether it is something hard and firm, or just voluminous loose stuff. I joined this list to learn more about both the ill effects of Miralax, as well as alternatives that we might be able to try. **** Well, I sure hope you can get something useful out of being here! It's really hard though with all the diagnosis' that they have, you will definitely want to stay in touch with their doctor about any supplements you try or any changes you want to make. that believes there is no problems with taking miralax

daily....or atleast that the risks outweigh the good. **** Right... and it is important to remember that... that you do have to weigh in the individual conditions and factors. It's not as simple as "no miralax" for everybody because of their other health conditions. I don't know exactly how we go against recommendations of the GI and maintain a decent relationship with her and with so many issues going on, we really need her. Rock and a hard place if you know what I mean!!! **** Absolutely. If I were in your shoes, I guess I would just broach the subject and say, you know, I like that miralax has helped in the short term, but I'm not comfortable with the idea of them using it indefinitely, or into adulthood, which is how it's feeling at this point! I'd really like to look at what else is out there that I can try to work into their program while decreasing the miralax slowly...and

for (Chance?) who is taking the 17 gram adult dose in the a.m. and the second dose at lunch, I'm interested in trying ___list out some things___ and also wondering if there's anything that can help the GI tract contractions that would be OK for him to take more often, so that we can decrease the miralax because the miralax only seems to be changing the consistency of the stool from hard to soft to liquid, and not really increasing the frequency of the stools themselves. And then just have the discussion with her. The bottom line is that you both are trying to help your kids, and as long as she understands that you are not questioning her medical judgment, that you actually value her opinion and want her help on it, then I would think that she would be open to working together on it with you. Keep us posted! Anyway, I have already learned alot and while I am still not sure what we're going to do, at least I know I am becoming

more fully informed. **** Well, and if what you read doesn't end up working for your own little kiddo's, then at least you have the information to help other people...chances are you will end up talking with another mom someday whose kids have constipation issues, and you'll be able to share with them what you know. W

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May 2, 2006

Hi --I'm not Kass but wanted to reply. My reply is in your text with ***marks, read thru till you see my signature... My son is on Carnitor. He never had a Ibs or constipation issue, but SCAD, a metabolic disorder and truthfully I wish I could take him off of it. I believe it has contributed to his hyperness and social issues. **** Could very well be causing the hyperness, but also consider the other ingredients that are IN carnitor... one of these might be the culprit and not the actual carnitine itself... if he does the oral solution, the artificial cherry flavor is a big red flag, and the sucrose syrup as well. For the tablet, I'm not sure...usually magnesium is helpful however the magnesium stearate is probably a cheapo kind used as a filler, and sometimes these are not well absorbed at all, and so it could be something that he

reacts to within the GI system. Povidone... not sure what that is...makes me think of povidone iodine. Oral Solution: Each 10 mL of clear, cherry flavored solution, for oral use only, contains: levocarnitine 1 g. Nonmedicinal ingredients: artificial cherry flavor, D,L-malic acid, methyl- and propylparaben (as preservatives), purified water and sucrose syrup. pH is approximately 5. Multiple-unit plastic containers of 118 mL, cases of 24. Store at room temperature. Avoid excessive heat. Protect from freezing. Store upright. Tablets: Each white, biconvex tablet, embossed with "CARNITOR ST", for oral use only, contains: levocarnitine 330 mg. Nonmedicinal ingredients: magnesium stearate, microcrystalline cellulose and povidone. Single unit blisters of laminated aluminum foil in cards of 10, cartons of 90 (9 cards/carton). Store at room temperature. Avoid excessive heat. Protect from

freezing. Do not store after removal from foil packaging: contents hygroscopic. Anyway, I am now doing homeopathy with my daughter who is 11 and have been for 3 months and since she has been on her remedy, she has not had chonic stomach pain as she was before. Overall I have seen gains and will continue with homeopathy. **** That is excellent... homeopathy didn't cure my dd's constipation because we did not find the exact right remedy for it yet, however, I've seen how homeopathy has helped my kids other issues and there is no doubt in my mind that it can help. I know quackwatch debunks homeopathy, but they also debunk so many other things that people do, and homeopathy wouldn't be so popular in European medicine if it didn't work in a good number of cases. SO I am inclined to keep working at

it. My daughter has CAPD, ADD, and IBS. We are also doing a neurodevelopmental program with LInda Kane. I am fed up with doctors. They dont listen and are very narrow minded. **** They can be. It's almost like the system makes them become that way, generally speaking of course. I know there are a lot of really good docs who do take the time to listen or try something different, but I think that the whole system of get them in, get them out for the next appointment really forces them to be quick and succinct and not have that time to really individualize and take time for people. Then you throw in the fact that pharm reps come by and tout certain meds, and it ends up being what they are familiar with. I know in my son's asthma, I had to

request a certain "old" med that I wanted him to try and it was just the right thing to bridge the gap and help my son's asthma, but because it wasn't a new med, it wasn't on the radar when we were talking about it. Same thing when I asked for the lactulose rx, her doc had to look it up...he knew what it was, but he couldn't recall the prescribing amount info because obviously it isn't rx'd much anymore. Miralax is the prescription du jour. I actually do like our kids pedi... he does take time to listen and is open to trying things but it is hard for me to voice that. It takes me a while to get my gumption up. I also have a naturopath that they go to for things too. Good luck and I hope I was of some help. Suzanne **** Good luck to you too and if you want to post more about the homeopathy experience, feel free

because I would love to be able to add it to the Files section as an option for people to read about. I know others who have had their lifelong constipation resolved by homeopathy... my daughter--just couldn't find "the" remedy to do it but I know others who have. It's actually what started our naturopath on the field--she had been a nurse, and had a friend with lifelong constipation that nothing would help, and then she worked with a homeopath, and the same day she took the remedy, she had three bowel movements a day for three months, and then it tapered off to the usual every day. But that was it, no more constipation for her. Amazing, and that is what was the "aha" moment for her as a nurse, so she studied to become a naturopathic doctor. W

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May 2, 2006

,

Thanks for the reply. He is on the oral liquid and he is only on it because it is a protocal they follow for kids with scad. He doesnt have any real symptoms other than low carnitine levels and being socially delayed. My plan is homeopathy with him as well eventually. You are lucky to have a good ped. we are in Hawaii and have been very disappointed in the quality of care here. I will keep you posted on how things progress with the homeopathy and IBS. The sad thing is it is stress induced IBS. The schools here are dirty and kids havent been all that kind to my daughter, which created this whole mess. I pulled her out and am homeschooling her with the hopes to put her back in school, after we move back to the mainland next year. There is always hope and just a matter of unlocking the puzzle to free our kids. Thanks again. Suzanne

Re: Carnitor & Intro, was: electrolytes Re: long-term use of PEG

Hi --I'm not Kass but wanted to reply. My reply is in your text with ***marks, read thru till you see my signature...

My son is on Carnitor. He never had a Ibs or constipation issue, but SCAD, a metabolic disorder and truthfully I wish I could take him off of it. I believe it has contributed to his hyperness and social issues.

**** Could very well be causing the hyperness, but also consider the other ingredients that are IN carnitor... one of these might be the culprit and not the actual carnitine itself... if he does the oral solution, the artificial cherry flavor is a big red flag, and the sucrose syrup as well. For the tablet, I'm not sure...usually magnesium is helpful however the magnesium stearate is probably a cheapo kind used as a filler, and sometimes these are not well absorbed at all, and so it could be something that he reacts to within the GI system. Povidone... not sure what that is...makes me think of povidone iodine.

Oral Solution: Each 10 mL of clear, cherry flavored solution, for oral use only, contains: levocarnitine 1 g. Nonmedicinal ingredients: artificial cherry flavor, D,L-malic acid, methyl- and propylparaben (as preservatives), purified water and sucrose syrup. pH is approximately 5. Multiple-unit plastic containers of 118 mL, cases of 24. Store at room temperature. Avoid excessive heat. Protect from freezing. Store upright. Tablets: Each white, biconvex tablet, embossed with "CARNITOR ST", for oral use only, contains: levocarnitine 330 mg. Nonmedicinal ingredients: magnesium stearate, microcrystalline cellulose and povidone. Single unit blisters of laminated aluminum foil in cards of 10, cartons of 90 (9 cards/carton). Store at room temperature. Avoid excessive heat. Protect from freezing. Do not store after removal from foil packaging: contents hygroscopic.

Anyway, I am now doing homeopathy with my daughter who is 11 and have been for 3 months and since she has been on her remedy, she has not had chonic stomach pain as she was before. Overall I have seen gains and will continue with homeopathy.

**** That is excellent... homeopathy didn't cure my dd's constipation because we did not find the exact right remedy for it yet, however, I've seen how homeopathy has helped my kids other issues and there is no doubt in my mind that it can help. I know quackwatch debunks homeopathy, but they also debunk so many other things that people do, and homeopathy wouldn't be so popular in European medicine if it didn't work in a good number of cases. SO I am inclined to keep working at it.

My daughter has CAPD, ADD, and IBS. We are also doing a neurodevelopmental program with LInda Kane. I am fed up with doctors. They dont listen and are very narrow minded.

**** They can be. It's almost like the system makes them become that way, generally speaking of course. I know there are a lot of really good docs who do take the time to listen or try something different, but I think that the whole system of get them in, get them out for the next appointment really forces them to be quick and succinct and not have that time to really individualize and take time for people. Then you throw in the fact that pharm reps come by and tout certain meds, and it ends up being what they are familiar with. I know in my son's asthma, I had to request a certain "old" med that I wanted him to try and it was just the right thing to bridge the gap and help my son's asthma, but because it wasn't a new med, it wasn't on the radar when we were talking about it. Same thing when I asked for the lactulose rx, her doc had to look it up...he knew what it was, but he couldn't recall the prescribing amount info because obviously it isn't rx'd much anymore. Miralax is the prescription du jour. I actually do like our kids pedi... he does take time to listen and is open to trying things but it is hard for me to voice that. It takes me a while to get my gumption up. I also have a naturopath that they go to for things too.

Good luck and I hope I was of some help. Suzanne

**** Good luck to you too and if you want to post more about the homeopathy experience, feel free because I would love to be able to add it to the Files section as an option for people to read about. I know others who have had their lifelong constipation resolved by homeopathy... my daughter--just couldn't find "the" remedy to do it but I know others who have. It's actually what started our naturopath on the field--she had been a nurse, and had a friend with lifelong constipation that nothing would help, and then she worked with a homeopath, and the same day she took the remedy, she had three bowel movements a day for three months, and then it tapered off to the usual every day. But that was it, no more constipation for her. Amazing, and that is what was the "aha" moment for her as a nurse, so she studied to become a naturopathic doctor.

W

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

May 3, 2006

I had to interject here, being the mommy cum pro in the allergy department. Any red dyes or artificial coloring/flavoring does indeed raise a HUGE red flag when it comes to allergies. And one of the biggest but least acknowledged or recognized responses to a food/additive allergy is hyperactivity. My stepson reacted to red dye by first acting with inappropriate laughter and silliness ("high"), and then went the other end of the spectrum and was downright abusive. Try to get a copy of Doris Rapp's book "Is This Your Child?" I took my stepson to be tested (at 14-15); most came up positive. His mother stopped his treatment when he returned to live with her, and they dx'd him with ADHD and multiple learning disabilities, and now that he's older (26) they've added in borderline personality disorder. Mind you, he was much improved when he was under treatment - which consisted of monitoring his diet and

desensitization via sublingual drops. His reading improved 2 grades and his math by 3. Does your son get the "allergy rings" (purplish-red) under his eyes; any redness of his earlobes? Most people think that allergic reactions are confined to the skin and sinuses...both of those are major organs, and so is the brain. My take on it is that if allergies can affect different parts of the body differently (i.e., hives, runny nose, itchy eyes), who's to say they don't affect other organs in different ways (i.e., personality changes and hyperactivity due to affects on the brain, gi problems, etc.). This leads me back to postings a while ago regarding leaky gut and the gut/brain link. Is it possible that ingested allergens can be a part of the puzzle? m w wrote: Hi --I'm not Kass but wanted to reply. My reply is in your text with ***marks, read thru till you see my signature... My son is on Carnitor. He never had a Ibs or constipation issue, but SCAD, a metabolic disorder and truthfully I wish I could take him off of it. I believe it has contributed to his hyperness and social issues. **** Could very well be causing the hyperness, but also consider the other ingredients that are IN carnitor... one of these might be the culprit and not the actual carnitine itself... if he does the oral solution, the artificial cherry flavor is a big red flag, and the sucrose syrup as well. For the tablet, I'm not sure...usually magnesium is helpful however the magnesium stearate is probably a cheapo kind used as a filler, and sometimes these are not well absorbed at all, and so it

could be something that he reacts to within the GI system. Povidone... not sure what that is...makes me think of povidone iodine. Oral Solution: Each 10 mL of clear, cherry flavored solution, for oral use only, contains: levocarnitine 1 g. Nonmedicinal ingredients: artificial cherry flavor, D,L-malic acid, methyl- and propylparaben (as preservatives), purified water and sucrose syrup. pH is approximately 5. Multiple-unit plastic containers of 118 mL, cases of 24. Store at room temperature. Avoid excessive heat. Protect from freezing. Store upright. Tablets: Each white, biconvex tablet, embossed with "CARNITOR ST", for oral use only, contains: levocarnitine 330 mg. Nonmedicinal ingredients: magnesium stearate, microcrystalline cellulose and povidone. Single unit blisters of laminated aluminum foil in cards of 10, cartons of 90 (9 cards/carton). Store at room temperature. Avoid excessive

heat. Protect from freezing. Do not store after removal from foil packaging: contents hygroscopic. Anyway, I am now doing homeopathy with my daughter who is 11 and have been for 3 months and since she has been on her remedy, she has not had chonic stomach pain as she was before. Overall I have seen gains and will continue with homeopathy. **** That is excellent... homeopathy didn't cure my dd's constipation because we did not find the exact right remedy for it yet, however, I've seen how homeopathy has helped my kids other issues and there is no doubt in my mind that it can help. I know quackwatch debunks homeopathy, but they also debunk so many other things that people do, and homeopathy wouldn't be so popular in European medicine if it didn't work in a good number of cases. SO I am inclined to keep working at

it. My daughter has CAPD, ADD, and IBS. We are also doing a neurodevelopmental program with LInda Kane. I am fed up with doctors. They dont listen and are very narrow minded. **** They can be. It's almost like the system makes them become that way, generally speaking of course. I know there are a lot of really good docs who do take the time to listen or try something different, but I think that the whole system of get them in, get them out for the next appointment really forces them to be quick and succinct and not have that time to really individualize and take time for people. Then you throw in the fact that pharm reps come by and tout certain meds, and it ends up being what they are familiar with. I know in my son's asthma, I had to request a

certain "old" med that I wanted him to try and it was just the right thing to bridge the gap and help my son's asthma, but because it wasn't a new med, it wasn't on the radar when we were talking about it. Same thing when I asked for the lactulose rx, her doc had to look it up...he knew what it was, but he couldn't recall the prescribing amount info because obviously it isn't rx'd much anymore. Miralax is the prescription du jour. I actually do like our kids pedi... he does take time to listen and is open to trying things but it is hard for me to voice that. It takes me a while to get my gumption up. I also have a naturopath that they go to for things too. Good luck and I hope I was of some help. Suzanne **** Good luck to you too and if you want to post more about the homeopathy experience, feel free because I would

love to be able to add it to the Files section as an option for people to read about. I know others who have had their lifelong constipation resolved by homeopathy... my daughter--just couldn't find "the" remedy to do it but I know others who have. It's actually what started our naturopath on the field--she had been a nurse, and had a friend with lifelong constipation that nothing would help, and then she worked with a homeopath, and the same day she took the remedy, she had three bowel movements a day for three months, and then it tapered off to the usual every day. But that was it, no more constipation for her. Amazing, and that is what was the "aha" moment for her as a nurse, so she studied to become a naturopathic doctor. W Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

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May 3, 2006

Hi,

It is funny, but I kept thinking it was the carnitor, but now I am convinced it is probably the artificial cherry flavor which probably has some sort of dye in it. I say that because it is the first ingredient after the L-carnitine and the way they list ingredients is that what ever is listed first is what has the greatest amount in the product. We have had hyper problems this whole school year because of this medicine. His doctor of course disagrees with me completely. If he really does need this product I am better off buying it myself at the health food store without all the garb. I am familiar with Doris Rapps book, even though I havent looked at it in a while. My other son was on a very restrictive diet for 2 years. I appreciate everyones input and concern and will continue to look more in depth at his diet as well. Thanks, Suzanne

Re: Carnitor & Intro, was: electrolytes Re: long-term use of PEG

I had to interject here, being the mommy cum pro in the allergy department. Any red dyes or artificial coloring/flavoring does indeed raise a HUGE red flag when it comes to allergies. And one of the biggest but least acknowledged or recognized responses to a food/additive allergy is hyperactivity. My stepson reacted to red dye by first acting with inappropriate laughter and silliness ("high"), and then went the other end of the spectrum and was downright abusive.

Try to get a copy of Doris Rapp's book "Is This Your Child?" I took my stepson to be tested (at 14-15); most came up positive. His mother stopped his treatment when he returned to live with her, and they dx'd him with ADHD and multiple learning disabilities, and now that he's older (26) they've added in borderline personality disorder. Mind you, he was much improved when he was under treatment - which consisted of monitoring his diet and desensitization via sublingual drops. His reading improved 2 grades and his math by 3.

Does your son get the "allergy rings" (purplish-red) under his eyes; any redness of his earlobes? Most people think that allergic reactions are confined to the skin and sinuses...both of those are major organs, and so is the brain. My take on it is that if allergies can affect different parts of the body differently (i.e., hives, runny nose, itchy eyes), who's to say they don't affect other organs in different ways (i.e., personality changes and hyperactivity due to affects on the brain, gi problems, etc.). This leads me back to postings a while ago regarding leaky gut and the gut/brain link. Is it possible that ingested allergens can be a part of the puzzle?