Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Thank you everybody for all of your advice and support!! It really helps. Jack is five months and two weeks old. I'm going to give the helmet a month and then evaluate how it's going. Debbie Jack -5 months (Hanger band/4 days) Sophia - 4 years > > > > Hi everyone. I'm in need of some good advice. Jack got his Hanger Helmet on Thursday. I have been very stressed since this all began and I'm worried that I am not making sound decisions. Now that he has it, I'm worried that I made the wrong choice and that we should have used Cranial Technologies. My husband wanted to use Hanger because our insurance covers them 100%. He also wanted to use Hanger because we went to a craniofacial specialist (Dr. Graham at Cedars) and he said that it did not matter which company we used. He said CT is the most parent friendly, but the end product is no different than the other companies. He said if our insurance covered Hanger, he thought we should use them. > > > > I of course am having a panic attack and want to go back to CT. I'm worried about the Helmet not working and/or making Jack's head worse. I'm worried that this is our one chance to correct his head and I don't want to mess it up. > > > > Again, I'm extremely emotional right now. Seeing Jack in his helmet and having a hard time adjusting is not helping. Am I crazy? Has anyone else worked themselves up like this? Any advice would be greatly appreciated. > > > > Jack's Cephalic Index is 104% and his Cranial Vault Asymmetry is 14mm > > > > Thanks, > > Debbie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 I'd give it longer. My son wore a doc band and to my eye I saw no change and they don't measure at every appt, at least CT doesn't always. But when they did the end measurments' and pics there had been Change I just couldn't see. I understand how you feel. Just feel good you're starting young and will catch good growth. My son started a hanger band with a bad bad ortho and had no correction, that was not the imagination, so we went out of state to CT and started that treatment at a year. I was so mad and upset over the loss of growth time and all. The helmet didn't bug my son. Actually now that its off he wants it back on. He was very severe with brachy. He still has it, and I have to accept that but, his head is better than what we started with, and better than if I would have gave up with the first experience. Good luck hun. Its all so overwhelming and draining. But were all here for you. If it weren't for this board, I would have not known what to do. Everyone here is great. Sent via BlackBerry from T-MobileFrom: "marlborosanta" Date: Tue, 05 May 2009 03:41:12 -0000<Plagiocephaly >Subject: Re: Advice Needed Thank you everybody for all of your advice and support!! It really helps. Jack is five months and two weeks old. I'm going to give the helmet a month and then evaluate how it's going. Debbie Jack -5 months (Hanger band/4 days) Sophia - 4 years > > > > Hi everyone. I'm in need of some good advice. Jack got his Hanger Helmet on Thursday. I have been very stressed since this all began and I'm worried that I am not making sound decisions. Now that he has it, I'm worried that I made the wrong choice and that we should have used Cranial Technologies. My husband wanted to use Hanger because our insurance covers them 100%. He also wanted to use Hanger because we went to a craniofacial specialist (Dr. Graham at Cedars) and he said that it did not matter which company we used. He said CT is the most parent friendly, but the end product is no different than the other companies. He said if our insurance covered Hanger, he thought we should use them. > > > > I of course am having a panic attack and want to go back to CT. I'm worried about the Helmet not working and/or making Jack's head worse. I'm worried that this is our one chance to correct his head and I don't want to mess it up. > > > > Again, I'm extremely emotional right now. Seeing Jack in his helmet and having a hard time adjusting is not helping. Am I crazy? Has anyone else worked themselves up like this? Any advice would be greatly appreciated. > > > > Jack's Cephalic Index is 104% and his Cranial Vault Asymmetry is 14mm > > > > Thanks, > > Debbie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 In a message dated 7/8/2009 1:36:32 P.M. Eastern Daylight Time, mvantil@... writes: A few weeks ago I began to get irritated skin on my lower face, mostly on the lower cheeks, around the mouth and a bit on the chin. It itches like the blazes, and if I don’t put heavy-duty moisturizer on it, the skin gets dry (I tend to have dry skin in general). The tissues of my lower face are actually swollen, --------------- I've heard of similar reactions on the skin of the lower face that were caused by toothpaste or mouthwash. Have you changed brands recently, or has your brand changed any of its ingredients? Or maybe the LDN is helping your immune system to function better, thus allowing it to react to some substance that you're sensitive to but that your immune system wasn't functioning well enough to react to before? Summer concert season is here! Find your favorite artists on tour at TourTracker.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 When candida yeast is being eliminated it sometimes eliminates through the skin. It does this with me every time. =========== > > I have a dilemma that I need some advice about. > > > > I have been on LDN for five months and the Specific Carbohydrate Diet for > six and am having excellent results re: my Crohn's, my allergies, asthma and > arthritis. > > > > A few weeks ago I began to get irritated skin on my lower face, mostly on > the lower cheeks, around the mouth and a bit on the chin. It itches like the > blazes, and if I don't put heavy-duty moisturizer on it, the skin gets dry > (I tend to have dry skin in general). The tissues of my lower face are > actually swollen, perhaps from scratching the area inadvertently while > asleep. I try not to do that while awake, though it's driving me crazy. The > LDN has helped my allergies and asthma, so this particular thing - which > seems allergy like - is odd. I can't figure out what could be causing this. > It sounds almost psoriasis like, but I've never had a problem with that. I > don't think I have a yeast problem - no (other) symptoms of that, and I'm > taking oil of oregano and a homeopathic yeast remedy, just to make sure. > Could it be diet? That seems unlikely since I'm not eating anything now that > I've ever reacted to. I've tried any number of remedies, including > anti-itch ointments, various serums, moisturizers, even DMSO with aloe. So > far, it's not going away. > > > > Comments? What else should I try? (I refrained from taking LDN on Monday > night for the first time since I started it, just to see if the effect would > be stronger the next night. It was, but just slightly. I felt it mainly in > how deeply I slept.) > > > > n > > (I'm copying this to a couple of related lists I'm on. One can never have > too much good advice!) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2009 Report Share Posted July 9, 2009 n, Have you started any new medications, in the month before the rash started? I'm thinking especially of hypertension meds, lisinopril, enalapril, cozaar? These meds can have a side effect of rosacea, which is what happened to me when I was put on them, and it first appeared only on my chin, eventually creeped up beside my nose, and finally reached my forehead as well. I had never had rosacea before in my life & my doctor at first didn't believe it was caused by the hypertension meds, but when I insisted that I knew it was that, she looked it up and later called me and apologized and said it does indeed cause rosacea in some people. Unfortunately, the rosacea never went away (even with Metrogel treatment) even though I haven't taken the hypertension meds in over two years. Just a thought. Best, Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 Check to see if you have Lyme. LDN will not cure lyme. From: low dose naltrexone on behalf of Katerina TriadafillouSent: Thu 2/18/2010 11:14 AMlow dose naltrexone Subject: [low dose naltrexone] advice needed Hi all, I have not been posting lately but I watch the activity of the group regularly. I started LDN in December 2007 and went on till September 2009. In 2007 my MS problems were not serious but I started going slowly downhill and things became worse from April 2009 for no obvious reason (diet or lifestyle changes). Unfortunately, it seems that I am one of the few persons that have not been helped by LDN. Last September I stopped taking it. Now I consider starting it again. As to the rest of my regimen, I am on a strict BBD/anticandida diet since 2007, take all the supplements recommended by Ashton Embry, live a low stress life and exercise regularly. I don't think that there was something in my regimen that stopped LDN from working. My question is: Is there anybody who has not seen results with LDN the first time and did better when he gave it a second try? Any suggestion will be highly appreciated. Thank you in advance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 I echo Ron's comment.People who have "MS", and take LDN....typically feel better for a few months only to get worse. This is an indication that a person's "MS" is actually a misdiagnosed Lyme infection.....at least that was my case.Once Lyme gets into your CNS....it can cause "MS" symptoms and neural scarring, because your immune system tries to go in after it. Your immune system creates inflammation to try to destroy it and that inflammation cause de-myelination of the neural tissue in the brain and spine........WHALLA....."MS".I'd be happy to send you my "Welcome to the path of discovering and proving whether or not you have Lyme Disease" information......if you are interested.Let me know.- Ken C.From: Ron Ball <rball@...>Katerina Triadafillou <ippokabos@...>; low dose naltrexone Sent: Thu, February 18, 2010 1:33:24 PMSubject: RE: [low dose naltrexone] advice needed Check to see if you have Lyme. LDN will not cure lyme. From: low dose naltrexone on behalf of Katerina TriadafillouSent: Thu 2/18/2010 11:14 AMlow dose naltrexoneSubject: [low dose naltrexone] advice needed Hi all, I have not been posting lately but I watch the activity of the group regularly. I started LDN in December 2007 and went on till September 2009. In 2007 my MS problems were not serious but I started going slowly downhill and things became worse from April 2009 for no obvious reason (diet or lifestyle changes). Unfortunately, it seems that I am one of the few persons that have not been helped by LDN. Last September I stopped taking it. Now I consider starting it again. As to the rest of my regimen, I am on a strict BBD/anticandida diet since 2007, take all the supplements recommended by Ashton Embry, live a low stress life and exercise regularly. I don't think that there was something in my regimen that stopped LDN from working. My question is: Is there anybody who has not seen results with LDN the first time and did better when he gave it a second try? Any suggestion will be highly appreciated. Thank you in advance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2010 Report Share Posted February 19, 2010 I have been reading here for years now, trying to figure where I fit in. Thank you ALL for your input, without it I wouldn’t have tried LDN, and I don’t think I would be doing as well as I AM. I started with an initial MS diagnosis when I began having double vision problems for 3 months the summer of 2007, it eventually corrected on its own. The initial ELISA LYME tests, on spinal fluid, the summers of 2007 and 2008 were negative, my first local Western Blot the fall of 2009, was ”negative” with only one band positive, but thanks to those of you that have talked about IGENEX Western Blot and LYME LITERATE doctors, I found both. My IGENEX Western Blot winter of 2009 confirmed I have had untreated Lyme the last 3.5 years, not MS. I have not tried any MS CRAB Drugs, although copaxone was suggested. I have had 7 Brain MRI’s so far showing plaques that look like MS. Never found the tick. The opinion of this ”LYMIE” is LDN can be critical in not only helping with LYME, but also in determining you have it! LDN is an important reason I figured out I had LYME and pursued more and better LYME tests! Four weeks in on LDN I had major “flare up” and was in bed unable to walk straight for a week. Later I found this can happen with those with undiagnosed Lyme, but I can’t find this web post now? I stayed on the LDN (not sure this was best thing to do now, but I did it) and LDN had helped with energy and brain fog, almost immediately, and I believe throughout. The second doctor I found to prescribe LDN believes in 3 mg /night, so I started there and am back on at 3 mg /night this week. I tried to get off of LDN in last few weeks, as I started antibiotics, and I got worse, slurring when speaking, problems with walking (not sure if it is the antibiotic after 2.5 months, or getting off the LDN, or both) , after 3 days back on LDN, I am feeling better, not slurring, and walking better. The antibiotics/getting off LDN last 2 weeks, has been nothing like what I believe was my initial HERX 4 weeks in on LDN, when I assume my immune system was turned back on and started going after the LYME. I have been to a LYME literate Doctor in December 2009, and started on 4 months of ANTIBIOTICS, 2.5 months in now) before I check back in May 2010. Was told I could get worse before better, but thinking now LDN is keeping me better than worse. I am 43 with no other health issue before this! I am willing to take anyone else’s input who has been through this especially if I might have something wrong, or am missing something here. I am still early in the process, ~6 months on LDN, and believe this has been going on just 3.5 years, a relatively short time to some, but it seems like forever to me. I try to read here regularly, but not to say I could have missed a few posts! I still wonder if I am going to be told I have something else before this is over, in addition to the LYME, co-infections of some sort. It took 4 LYME tests before I was told I have LYME! Someone posted they had LYME and MS? Again, thank you ALL for posting on LDN here! Sorry this isn’t shorter, it’s 3.5 years worth! From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of zahavi Sent: Thursday, February 18, 2010 1:57 PM To: low dose naltrexone Subject: [low dose naltrexone] advice needed people with lyme that are misdiagnosed with ms do not benefit from ldn.go to the forum of brenda.much about misdiagnosed lyme. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2010 Report Share Posted February 19, 2010 - Please keep us posted on your progess on abx and LDN for lyme/MS. I'm in a similar boat-but mine started with Fibro 12 years ago , then optic neuritis 3.5 years ago. Unfortuantely treatment with herbs and my first experiment with pharmecuticals send me into a downward spiral with so many scary neuro symptoms I can't function. I'm also chemically senstive. Now to the point right now in this flare my system can't seem to handle any herb, nothing-not even 1 drop of artemesia sent my head into a dizzy ,jerking thing (one of my new/worst symptoms). I was on LDN for a year the year before last- after first neuro explosion (lasted 4 months) from herbs. Decided to get back on it while I seek treatment for lyme/next steps. Did you have a horrible/non bearable new neuro symptoms on abx? Please post back from time to time and let us know how you are doing. I had n MRI 2 years ago that showed no lesions. Right now my symptoms are all very MS like- now numbness that is not fading, balance, weakness, jerking,total insomnia, twitching, dizzy /brain thing, eye pain, coordination, dept perception etc etc. (all since a flagyl/diflucan 3 weeks followed by herbal treatment in December). > > I have been reading here for years now, trying to figure where I fit in. > > > > Thank you ALL for your input, without it I wouldn't have tried LDN, and > I don't think I would be doing as well as I AM. > > > > I started with an initial MS diagnosis when I began having double vision > problems for 3 months the summer of 2007, it eventually corrected on its > own. > > > > The initial ELISA LYME tests, on spinal fluid, the summers of 2007 and > 2008 were negative, my first local Western Blot the fall of 2009, was > " negative " with only one band positive, but thanks to those of you that > have talked about IGENEX Western Blot and LYME LITERATE doctors, I found > both. My IGENEX Western Blot winter of 2009 confirmed I have had > untreated Lyme the last 3.5 years, not MS. I have not tried any MS CRAB > Drugs, although copaxone was suggested. I have had 7 Brain MRI's so far > showing plaques that look like MS. Never found the tick. > > > > > > The opinion of this " LYMIE " is LDN can be critical in not only helping > with LYME, but also in determining you have it! > > LDN is an important reason I figured out I had LYME and pursued more and > better LYME tests! Four weeks in on LDN I had major " flare up " and was > in bed unable to walk straight for a week. Later I found this can > happen with those with undiagnosed Lyme, but I can't find this web post > now? I stayed on the LDN (not sure this was best thing to do now, but I > did it) and LDN had helped with energy and brain fog, almost > immediately, and I believe throughout. The second doctor I found to > prescribe LDN believes in 3 mg /night, so I started there and am back on > at 3 mg /night this week. > > > > I tried to get off of LDN in last few weeks, as I started antibiotics, > and I got worse, slurring when speaking, problems with walking (not sure > if it is the antibiotic after 2.5 months, or getting off the LDN, or > both) , after 3 days back on LDN, I am feeling better, not slurring, and > walking better. The antibiotics/getting off LDN last 2 weeks, has been > nothing like what I believe was my initial HERX 4 weeks in on LDN, when > I assume my immune system was turned back on and started going after the > LYME. > > > > I have been to a LYME literate Doctor in December 2009, and started on 4 > months of ANTIBIOTICS, 2.5 months in now) before I check back in May > 2010. Was told I could get worse before better, but thinking now LDN is > keeping me better than worse. > > > > I am 43 with no other health issue before this! > > > > I am willing to take anyone else's input who has been through this > especially if I might have something wrong, or am missing something > here. I am still early in the process, ~6 months on LDN, and believe > this has been going on just 3.5 years, a relatively short time to some, > but it seems like forever to me. I try to read here regularly, but not > to say I could have missed a few posts! > > > > I still wonder if I am going to be told I have something else before > this is over, in addition to the LYME, co-infections of some sort. It > took 4 LYME tests before I was told I have LYME! Someone posted they > had LYME and MS? > > > > Again, thank you ALL for posting on LDN here! Sorry this isn't shorter, > it's 3.5 years worth! > > > > > > ________________________________ > > From: low dose naltrexone > [mailto:low dose naltrexone ] On Behalf Of zahavi > Sent: Thursday, February 18, 2010 1:57 PM > low dose naltrexone > Subject: [low dose naltrexone] advice needed > > > > > > people with lyme that are misdiagnosed with ms do not benefit from > ldn.go to the forum of brenda.much about misdiagnosed lyme. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2010 Report Share Posted February 19, 2010 You mentioned that you never found the tick......Just so you know.....and you'll never hear this from the mainstream media or your local doctor........but Borellia can be spread by ANY insect vector....ticks, fleas, mosquitoes, biting flies. Any insect that can pass blood between hosts can potentially carry and pass borellia.http://www.canlyme.com/mosquitos_carry_lyme.htmlLDN is a very helpful tool in the toolbox for treating and managing Lyme Disease.....but it is not the answer.....If you have Lyme.....long term abx is the only way....(doxycycline, minocycline, IV Rocephin, etc.)From: ", Bradley J." <stewbj@...>zahavi <zahavi100@...>; low dose naltrexone Sent: Fri, February 19, 2010 8:34:26 AMSubject: RE: [low dose naltrexone] advice needed I have been reading here for years now, trying to figure where I fit in. Thank you ALL for your input, without it I wouldn’t have tried LDN, and I don’t think I would be doing as well as I AM. I started with an initial MS diagnosis when I began having double vision problems for 3 months the summer of 2007, it eventually corrected on its own. The initial ELISA LYME tests, on spinal fluid, the summers of 2007 and 2008 were negative, my first local Western Blot the fall of 2009, was â€negative†with only one band positive, but thanks to those of you that have talked about IGENEX Western Blot and LYME LITERATE doctors, I found both. My IGENEX Western Blot winter of 2009 confirmed I have had untreated Lyme the last 3.5 years, not MS. I have not tried any MS CRAB Drugs, although copaxone was suggested. I have had 7 Brain MRI’s so far showing plaques that look like MS. Never found the tick. The opinion of this â€LYMIE†is LDN can be critical in not only helping with LYME, but also in determining you have it! LDN is an important reason I figured out I had LYME and pursued more and better LYME tests! Four weeks in on LDN I had major “flare up†and was in bed unable to walk straight for a week. Later I found this can happen with those with undiagnosed Lyme, but I can’t find this web post now? I stayed on the LDN (not sure this was best thing to do now, but I did it) and LDN had helped with energy and brain fog, almost immediately, and I believe throughout. The second doctor I found to prescribe LDN believes in 3 mg /night, so I started there and am back on at 3 mg /night this week. I tried to get off of LDN in last few weeks, as I started antibiotics, and I got worse, slurring when speaking, problems with walking (not sure if it is the antibiotic after 2.5 months, or getting off the LDN, or both) , after 3 days back on LDN, I am feeling better, not slurring, and walking better. The antibiotics/ getting off LDN last 2 weeks, has been nothing like what I believe was my initial HERX 4 weeks in on LDN, when I assume my immune system was turned back on and started going after the LYME. I have been to a LYME literate Doctor in December 2009, and started on 4 months of ANTIBIOTICS, 2.5 months in now) before I check back in May 2010. Was told I could get worse before better, but thinking now LDN is keeping me better than worse. I am 43 with no other health issue before this! I am willing to take anyone else’s input who has been through this especially if I might have something wrong, or am missing something here. I am still early in the process, ~6 months on LDN, and believe this has been going on just 3.5 years, a relatively short time to some, but it seems like forever to me. I try to read here regularly, but not to say I could have missed a few posts! I still wonder if I am going to be told I have something else before this is over, in addition to the LYME, co-infections of some sort. It took 4 LYME tests before I was told I have LYME! Someone posted they had LYME and MS? Again, thank you ALL for posting on LDN here! Sorry this isn’t shorter, it’s 3.5 years worth! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 I agree it sounds like malpractice. Shame on the doctor. I would talk to a malpractice attorney about that. But I wanted to mention to you an intervention called " interactive metronome. " Before we knew my daughter had Lyme, and we just thought she had auditory processing disorder, she did a whole auditory panel and then was recommended to this intervention. It does rebuild neuro pathways. After she did it, she was able to learn spelling, whereas before she was not able to. It was originally designed to help athletes improve their response time and coordination. Then they realized it was helpful for these types of things. Basically, they attached some sort of EKG type things on my daughter, and she practiced doing repetitive motion while she was watching a screen flash a light at regular intervals. She had to toe tap side to side, front to back, clap in rhythm, etc. It sounds strange, but this totally improved her neuro pathways. She has recently asked to do it again after 19 months of Lyme treatment to see if it would help her further. Also, I'm kind of surprised that the damage is permanent in your son. But anyway, I would recommend this. A couple of words to the wise about it: it's expensive (she did 18 sessions, $100 each -- ouch -- totally not covered by insurance) and on the days she did it, she was compeletely wiped out afterwards. It only lasts an hour or less each session, but it really is intense and works those parts of their brain that have to create neural pathways, so not surprising. But I really do recommend it. They had data from each time that supported our lay observations that she was focusing better and improving her coordination. Anyway, it's called Interactive Metronome and people get specially trained in it. I do believe it would be worth a try in your son's case. Sorry for all you're going through. Natasha ________________________________ From: Farhangi <lesliefarhangi@...> Lyme Treatment Sent: Sat, February 26, 2011 5:24:59 AM Subject: [ ] advice needed My 11 year old has had neurological complications from lyme. Our LLMD referred us to a great neurologist, who is in the middle of doing a ton of tests. However, an MRI shows a lesion in his frontal lobe that the neurologist believes is caused by the lyme inflammation. This is upsetting because the damage is permanent. In the midst of this I called my son's pediatrician (at first the radiologist thought the lesion was an old stroke) and asked her about an office visit I remembered from when my son was 2. I remembered him dragging his left leg, and so I asked her to go over her notes and see if there was anything that would shed light on his current situation. She read them to me over the phone. She said I told her that he had been bitten by a tick two months earlier, and that he was definitely dragging his left leg and didn't want to be touched on his left side. She did not do a lyme test. OK, so now for my questions: 1. it is unlikely, but does anyone have any experience with trying to overcome such a brain injury? My only hope, I think, is some kind of neural feedback to try and build other pathways to replace the damaged ones in his brain. I don't know if this is even possible. 2. Seems like the pediatrician committed malpractice to me -- I live in a highly lyme endemic area, why the !@#$% *wouldn't* she have just done a lyme test, thus preventing permanent brain damage? Comments? Of course we don't know for sure if he had lyme then b/c no test was done. I am furious, and one outcome I would want is education for the doctors here that when a child (or anyone) comes in with unusual symptoms -- and especially if they say they've been bitten by a tick -- for god's sake, just run the test! (Understanding it is not 100% accurate, but it is 100% more accurate than doing nothing!!). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 I totally agree. I do however feel that this being an unfortunate lack of attention from his doctor, more fault lies with the CDC for misinformation at the national level and treating Lymes as if it's not really that bad of a disease. After all the truth could cause worldwide panic and would cost money to research. Not to mention the only cure right now is long term antibiotics that causes antibiotic resistance bacterias. It comes down to the fact that our health and livelihood is weighed on a political scale and Lymes is losing out to things like Cancer because it has more attention and political pull. I think your on the right track with your son recovery right now and if you could find the right Neuro to work with you maybe he can fully recover. Keep an open mind and do your own research to find a cure. You might even have to find a country that will let you use cutting edge treatments our country finds experimental or offensive. Good luck. We are all on your side. Suzanne Sent from my iPhone On Feb 26, 2011, at 7:24 AM, Farhangi <lesliefarhangi@...> wrote: > My 11 year old has had neurological complications from lyme. Our LLMD > referred us to a great neurologist, who is in the middle of doing a ton of > tests. However, an MRI shows a lesion in his frontal lobe that the > neurologist believes is caused by the lyme inflammation. This is upsetting > because the damage is permanent. > > In the midst of this I called my son's pediatrician (at first the > radiologist thought the lesion was an old stroke) and asked her about an > office visit I remembered from when my son was 2. I remembered him dragging > his left leg, and so I asked her to go over her notes and see if there was > anything that would shed light on his current situation. She read them to > me over the phone. She said I told her that he had been bitten by a tick > two months earlier, and that he was definitely dragging his left leg and > didn't want to be touched on his left side. She did not do a lyme test. > > OK, so now for my questions: > > 1. it is unlikely, but does anyone have any experience with trying to > overcome such a brain injury? My only hope, I think, is some kind of neural > feedback to try and build other pathways to replace the damaged ones in his > brain. I don't know if this is even possible. > > 2. Seems like the pediatrician committed malpractice to me -- I live in a > highly lyme endemic area, why the !@#$% *wouldn't* she have just done a lyme > test, thus preventing permanent brain damage? Comments? Of course we don't > know for sure if he had lyme then b/c no test was done. I am furious, and > one outcome I would want is education for the doctors here that when a child > (or anyone) comes in with unusual symptoms -- and especially if they say > they've been bitten by a tick -- for god's sake, just run the test! > (Understanding it is not 100% accurate, but it is 100% more accurate than > doing nothing!!). > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 What does your LLMD say about the lesion? I am just wondering if it really is permanent. My daughter had a SPECT scan that showed problems that our regular doctor described as the cortex dieing and felt it was nonreversable damage. She had several MRIs that showed small white spots, some kind of lesion? that they were not sure what caused it. The neurologist felt they were inconsequential. This is not what your doctor described, but in my daughters case treatment has vastly improved her cognitive function and her LLMD said that sometimes the SPECT scans do show improvement over time. (We have not had a repeat one done though.) I am just wondering if this is truly permanent damage or something that can come back? I really do not know, but if the neurologist is not really Lyme literate, I would want to get to one who is. So sorry that the Lyme was missed even when you mentioned a tick bite!! My daughter was bitten around age 2 or so and we never knew it. She had ring worm that would not go away and CFS type symptoms and tons of insect bites, but no known tick. She was not diagnosed for a dozen years. Good luck, On 2/26/2011 8:24 AM, Farhangi wrote: > > My 11 year old has had neurological complications from lyme. Our LLMD > referred us to a great neurologist, who is in the middle of doing a ton of > tests. However, an MRI shows a lesion in his frontal lobe that the > neurologist believes is caused by the lyme inflammation. This is upsetting > because the damage is permanent. > > In the midst of this I called my son's pediatrician (at first the > radiologist thought the lesion was an old stroke) and asked her about an > office visit I remembered from when my son was 2. I remembered him > dragging > his left leg, and so I asked her to go over her notes and see if there was > anything that would shed light on his current situation. She read them to > me over the phone. She said I told her that he had been bitten by a tick > two months earlier, and that he was definitely dragging his left leg and > didn't want to be touched on his left side. She did not do a lyme test. > > OK, so now for my questions: > > 1. it is unlikely, but does anyone have any experience with trying to > overcome such a brain injury? My only hope, I think, is some kind of > neural > feedback to try and build other pathways to replace the damaged ones > in his > brain. I don't know if this is even possible. > > 2. Seems like the pediatrician committed malpractice to me -- I live in a > highly lyme endemic area, why the !@#$% *wouldn't* she have just done > a lyme > test, thus preventing permanent brain damage? Comments? Of course we don't > know for sure if he had lyme then b/c no test was done. I am furious, and > one outcome I would want is education for the doctors here that when a > child > (or anyone) comes in with unusual symptoms -- and especially if they say > they've been bitten by a tick -- for god's sake, just run the test! > (Understanding it is not 100% accurate, but it is 100% more accurate than > doing nothing!!). > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 Thank you so much everyone, I am so glad I posted. I hesitated -- I can't even speak about my son publicly these days without bursting into tears, which is a bit embarrassing! :-) I do not know how reversible or not the damage is -- we haven't had a follow up appt with the neurologist yet, plus he is running a TON of bloodwork (which I agree with, to see if there's something autoimmune going on too etc) and also doing a sleep study and more neuropsych testing. After all the tests are in, we'll go back to our LLMD and get his take too. Those lesions might be the same thing -- the radiologist thought his was either caused by a stroke, or inflammation, and also was not sure what the effect was. The difference is that our neurologist believes it is consequential. Treatment has *not* improved my son's cognitive function. Thank you SO much for telling me about the interactive metronome -- this is EXACTLY what I'm hoping to learn. I am completely up for trying a bunch of therapies like this over the rest of the school year and over the summer. As it is, he isn't really able to cope with sixth grade. Again, thank you so much for the words of support. I feel like this is a very dark time for us. On Sat, Feb 26, 2011 at 10:51 AM, Faces <faces@...> wrote: > > > What does your LLMD say about the lesion? I am just wondering if it > really is permanent. My daughter had a SPECT scan that showed problems > that our regular doctor described as the cortex dieing and felt it was > nonreversable damage. She had several MRIs that showed small white > spots, some kind of lesion? that they were not sure what caused it. The > neurologist felt they were inconsequential. This is not what your doctor > described, but in my daughters case treatment has vastly improved her > cognitive function and her LLMD said that sometimes the SPECT scans do > show improvement over time. (We have not had a repeat one done though.) > I am just wondering if this is truly permanent damage or something that > can come back? I really do not know, but if the neurologist is not > really Lyme literate, I would want to get to one who is. > > So sorry that the Lyme was missed even when you mentioned a tick bite!! > My daughter was bitten around age 2 or so and we never knew it. She had > ring worm that would not go away and CFS type symptoms and tons of > insect bites, but no known tick. She was not diagnosed for a dozen years. > > Good luck, > > > > > On 2/26/2011 8:24 AM, Farhangi wrote: > > > > My 11 year old has had neurological complications from lyme. Our LLMD > > referred us to a great neurologist, who is in the middle of doing a ton > of > > tests. However, an MRI shows a lesion in his frontal lobe that the > > neurologist believes is caused by the lyme inflammation. This is > upsetting > > because the damage is permanent. > > > > In the midst of this I called my son's pediatrician (at first the > > radiologist thought the lesion was an old stroke) and asked her about an > > office visit I remembered from when my son was 2. I remembered him > > dragging > > his left leg, and so I asked her to go over her notes and see if there > was > > anything that would shed light on his current situation. She read them to > > me over the phone. She said I told her that he had been bitten by a tick > > two months earlier, and that he was definitely dragging his left leg and > > didn't want to be touched on his left side. She did not do a lyme test. > > > > OK, so now for my questions: > > > > 1. it is unlikely, but does anyone have any experience with trying to > > overcome such a brain injury? My only hope, I think, is some kind of > > neural > > feedback to try and build other pathways to replace the damaged ones > > in his > > brain. I don't know if this is even possible. > > > > 2. Seems like the pediatrician committed malpractice to me -- I live in a > > highly lyme endemic area, why the !@#$% *wouldn't* she have just done > > a lyme > > test, thus preventing permanent brain damage? Comments? Of course we > don't > > know for sure if he had lyme then b/c no test was done. I am furious, and > > one outcome I would want is education for the doctors here that when a > > child > > (or anyone) comes in with unusual symptoms -- and especially if they say > > they've been bitten by a tick -- for god's sake, just run the test! > > (Understanding it is not 100% accurate, but it is 100% more accurate than > > doing nothing!!). > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 Hi -- I wanted to tell you also about my daughter, who I mentioned has auditory processing disorder (we believe from the Lyme, which is congenital). She did a whole panel of auditory processing testing, and then did some therapeutic work that helped a lot before starting interactive metronome. I think it is worth it. If you want to know more about auditory processing disorder (which, I might add, a $4500 neuropsych test report never mentioned -- argh) look at a book called " When the Brain Can't hear " -- if the symptoms sound like your son I strongly urge you to get him tested and treated. Good luck -- it's so hard to see our children suffer. NAtasha ________________________________ From: Farhangi <lesliefarhangi@...> Sent: Sat, February 26, 2011 9:30:54 AM Subject: Re: [ ] advice needed Thank you so much everyone, I am so glad I posted. I hesitated -- I can't even speak about my son publicly these days without bursting into tears, which is a bit embarrassing! :-) I do not know how reversible or not the damage is -- we haven't had a follow up appt with the neurologist yet, plus he is running a TON of bloodwork (which I agree with, to see if there's something autoimmune going on too etc) and also doing a sleep study and more neuropsych testing. After all the tests are in, we'll go back to our LLMD and get his take too. Those lesions might be the same thing -- the radiologist thought his was either caused by a stroke, or inflammation, and also was not sure what the effect was. The difference is that our neurologist believes it is consequential. Treatment has *not* improved my son's cognitive function. Thank you SO much for telling me about the interactive metronome -- this is EXACTLY what I'm hoping to learn. I am completely up for trying a bunch of therapies like this over the rest of the school year and over the summer. As it is, he isn't really able to cope with sixth grade. Again, thank you so much for the words of support. I feel like this is a very dark time for us. On Sat, Feb 26, 2011 at 10:51 AM, Faces <faces@...> wrote: > > > What does your LLMD say about the lesion? I am just wondering if it > really is permanent. My daughter had a SPECT scan that showed problems > that our regular doctor described as the cortex dieing and felt it was > nonreversable damage. She had several MRIs that showed small white > spots, some kind of lesion? that they were not sure what caused it. The > neurologist felt they were inconsequential. This is not what your doctor > described, but in my daughters case treatment has vastly improved her > cognitive function and her LLMD said that sometimes the SPECT scans do > show improvement over time. (We have not had a repeat one done though.) > I am just wondering if this is truly permanent damage or something that > can come back? I really do not know, but if the neurologist is not > really Lyme literate, I would want to get to one who is. > > So sorry that the Lyme was missed even when you mentioned a tick bite!! > My daughter was bitten around age 2 or so and we never knew it. She had > ring worm that would not go away and CFS type symptoms and tons of > insect bites, but no known tick. She was not diagnosed for a dozen years. > > Good luck, > > > > > On 2/26/2011 8:24 AM, Farhangi wrote: > > > > My 11 year old has had neurological complications from lyme. Our LLMD > > referred us to a great neurologist, who is in the middle of doing a ton > of > > tests. However, an MRI shows a lesion in his frontal lobe that the > > neurologist believes is caused by the lyme inflammation. This is > upsetting > > because the damage is permanent. > > > > In the midst of this I called my son's pediatrician (at first the > > radiologist thought the lesion was an old stroke) and asked her about an > > office visit I remembered from when my son was 2. I remembered him > > dragging > > his left leg, and so I asked her to go over her notes and see if there > was > > anything that would shed light on his current situation. She read them to > > me over the phone. She said I told her that he had been bitten by a tick > > two months earlier, and that he was definitely dragging his left leg and > > didn't want to be touched on his left side. She did not do a lyme test. > > > > OK, so now for my questions: > > > > 1. it is unlikely, but does anyone have any experience with trying to > > overcome such a brain injury? My only hope, I think, is some kind of > > neural > > feedback to try and build other pathways to replace the damaged ones > > in his > > brain. I don't know if this is even possible. > > > > 2. Seems like the pediatrician committed malpractice to me -- I live in a > > highly lyme endemic area, why the !@#$% *wouldn't* she have just done > > a lyme > > test, thus preventing permanent brain damage? Comments? Of course we > don't > > know for sure if he had lyme then b/c no test was done. I am furious, and > > one outcome I would want is education for the doctors here that when a > > child > > (or anyone) comes in with unusual symptoms -- and especially if they say > > they've been bitten by a tick -- for god's sake, just run the test! > > (Understanding it is not 100% accurate, but it is 100% more accurate than > > doing nothing!!). > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Thank you for this. I did check out the book, and while he has some symptoms, he doesn't have others. I " ll keep it in the back of my head though. Agreed, it is 1000 times worse when it is your child! Now off to check out the interactive metronome. On Sat, Feb 26, 2011 at 3:21 PM, Natasha Moiseyev <nmoiseyev@...>wrote: > > > Hi -- > > I wanted to tell you also about my daughter, who I mentioned has auditory > processing disorder (we believe from the Lyme, which is congenital). She > did a > whole panel of auditory processing testing, and then did some therapeutic > work > that helped a lot before starting interactive metronome. I think it is > worth > it. If you want to know more about auditory processing disorder (which, I > might > add, a $4500 neuropsych test report never mentioned -- argh) look at a book > > called " When the Brain Can't hear " -- if the symptoms sound like your son I > > strongly urge you to get him tested and treated. > > Good luck -- it's so hard to see our children suffer. > > NAtasha > > ________________________________ > From: Farhangi <lesliefarhangi@...> > > Sent: Sat, February 26, 2011 9:30:54 AM > Subject: Re: [ ] advice needed > > > Thank you so much everyone, I am so glad I posted. I hesitated -- I can't > even speak about my son publicly these days without bursting into tears, > which is a bit embarrassing! :-) > > I do not know how reversible or not the damage is -- we haven't had a > follow > up appt with the neurologist yet, plus he is running a TON of bloodwork > (which I agree with, to see if there's something autoimmune going on too > etc) and also doing a sleep study and more neuropsych testing. After all > the tests are in, we'll go back to our LLMD and get his take too. > > Those lesions might be the same thing -- the radiologist thought his was > either caused by a stroke, or inflammation, and also was not sure what the > effect was. The difference is that our neurologist believes it is > consequential. Treatment has *not* improved my son's cognitive function. > > Thank you SO much for telling me about the interactive metronome -- this is > EXACTLY what I'm hoping to learn. I am completely up for trying a bunch of > therapies like this over the rest of the school year and over the summer. > As it is, he isn't really able to cope with sixth grade. > > Again, thank you so much for the words of support. I feel like this is a > very dark time for us. > > > > On Sat, Feb 26, 2011 at 10:51 AM, Faces <faces@...> wrote: > > > > > > > What does your LLMD say about the lesion? I am just wondering if it > > really is permanent. My daughter had a SPECT scan that showed problems > > that our regular doctor described as the cortex dieing and felt it was > > nonreversable damage. She had several MRIs that showed small white > > spots, some kind of lesion? that they were not sure what caused it. The > > neurologist felt they were inconsequential. This is not what your doctor > > described, but in my daughters case treatment has vastly improved her > > cognitive function and her LLMD said that sometimes the SPECT scans do > > show improvement over time. (We have not had a repeat one done though.) > > I am just wondering if this is truly permanent damage or something that > > can come back? I really do not know, but if the neurologist is not > > really Lyme literate, I would want to get to one who is. > > > > So sorry that the Lyme was missed even when you mentioned a tick bite!! > > My daughter was bitten around age 2 or so and we never knew it. She had > > ring worm that would not go away and CFS type symptoms and tons of > > insect bites, but no known tick. She was not diagnosed for a dozen years. > > > > Good luck, > > > > > > > > > > On 2/26/2011 8:24 AM, Farhangi wrote: > > > > > > My 11 year old has had neurological complications from lyme. Our LLMD > > > referred us to a great neurologist, who is in the middle of doing a ton > > of > > > tests. However, an MRI shows a lesion in his frontal lobe that the > > > neurologist believes is caused by the lyme inflammation. This is > > upsetting > > > because the damage is permanent. > > > > > > In the midst of this I called my son's pediatrician (at first the > > > radiologist thought the lesion was an old stroke) and asked her about > an > > > office visit I remembered from when my son was 2. I remembered him > > > dragging > > > his left leg, and so I asked her to go over her notes and see if there > > was > > > anything that would shed light on his current situation. She read them > to > > > me over the phone. She said I told her that he had been bitten by a > tick > > > two months earlier, and that he was definitely dragging his left leg > and > > > didn't want to be touched on his left side. She did not do a lyme test. > > > > > > OK, so now for my questions: > > > > > > 1. it is unlikely, but does anyone have any experience with trying to > > > overcome such a brain injury? My only hope, I think, is some kind of > > > neural > > > feedback to try and build other pathways to replace the damaged ones > > > in his > > > brain. I don't know if this is even possible. > > > > > > 2. Seems like the pediatrician committed malpractice to me -- I live in > a > > > highly lyme endemic area, why the !@#$% *wouldn't* she have just done > > > a lyme > > > test, thus preventing permanent brain damage? Comments? Of course we > > don't > > > know for sure if he had lyme then b/c no test was done. I am furious, > and > > > one outcome I would want is education for the doctors here that when a > > > child > > > (or anyone) comes in with unusual symptoms -- and especially if they > say > > > they've been bitten by a tick -- for god's sake, just run the test! > > > (Understanding it is not 100% accurate, but it is 100% more accurate > than > > > doing nothing!!). > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 I don't know how long or how effectively your son has been treated, but all I can say is that Treating all coinfections is important. It is not just lyme that causes cognitive dysfunction. And toxicity can as well. All need to be adequately addressed. Our personal example resulted in all 3 of our kids (tx atarting at 6.5yo, 5.5yo and 2yrs) being significantly restored. Our oldest 2, daughter and son, had abnormal SPECT scans, and lots of cognitive issues. After 3.5 yrs treating all coinfections (they had evidence of Lyme, BaBesia, Bartonella, HME-Ehrlichiosis, mycoplasma, HHV-6, chlamydia pneumoniae, reactivated EBV), they are doing very well. Ouir middle son saw a 23pt increase in IQ and is now in Gifted program, our daughter had a 16pt IQ increase and was identified by her teacher for Gifted too. She had developed dyslexia, couldn't spell at all, handwriting was painful, couldn't remember, processed so slowly, couldn't focus--- all hugely impacted school performance. But, in a school setting b/c they were innately intelligent,they didn't " stick out " . They were average or sometimes a little behind. Even with missing loads of school in the first years of illness. Our youngest did not have prior IQ test but had significant language delays and could not recognize/remember letters or numbers... His cognitive issues took a while to show improvement but after we started hitting the Bartonella is when we started to see huge improvements. There is hope... Keep going, many layers of the onion need to be unpeeled. You are doing the right thing! Sent via BlackBerry by AT & T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2011 Report Share Posted February 28, 2011 Sounds to me as this poor boy isn’t receiving any nutrition that will assist in his healing. If this were my child I would be insisting on green drinks, so wheat grass or even a green supplement added to this garbage. Bone broths, fish oils, lots of high nutrient dense food, I’d go beyond the dietician to the top if I had to do so. Just my humble opinion. Bonnie From: Coconut Oil [mailto:Coconut Oil ] On Behalf Of M Sent: Monday, February 28, 2011 9:16 PM Coconut Oil Subject: Advice Needed This email below is written by my best friend who is looking for advice. Any help will be greatly appreciated. Many thanks! Margo My 22-year-old son suffered a serious spinal injury and has been confined to an ICU for the past 3 weeks. Yesterday he received a tracheostomy, in place of a breathing tube down his throat. Since he's been under ICU care, he has received only Nestle's Impact formula* as sustenance, and I am very concerned that he's never needed a nutrient dense food-based diet more than right now. We have been told that he may remain on tube feedings for several more weeks or even months. The dietician feels he's receiving proper nutrition, and is so far unwilling to allow augmentation or supplementation to this formula. In addition to being critically injured and paralyzed in arms & legs, my son is battling hospital contracted pneumonia, c-diff intestinal infection, and the trach renders him unable to speak or eat normally. In short, despite heroic efforts of excellent neurosurgeons, my son became ill, almost from the moment he entered the door of the ICU. Nutrition--food as medicine--appears to be the last consideration there. My question: I am trying to research some sort of supplementation that will easily pass through a feeding tube--one which the dietician cannot claim may clog the tube or object to for other reasons (ie she claims no added probiotics may be added because of concerns/liabilities re contracting meningitis). As his mom, I'm more than willing to sign release of liability, and am happy to prepare, administer, etc any supplementation-- however, this plea appears to fall on deaf ears. I thought of preparing bone broths, wheatgrass juice, sauerkraut juice, healthy oils, ie flax & cod liver oils....below are the ingredients of the Impact formula. Do you have any suggestions or knowledge about these matters?? Thank you so very much for your help. Impact Ingredients Water, maltodextrin, sodium caseinate (milk protein), palm kernel oil, L-arginine, calcium caseinate, refined menhaden oil, citric acid, sunflower oil, potassium citrate, calcium phosphate tribasic, yeast extract, cellulose gel, sodium citrate, methylparaben†, magnesium chloride, hydroxylated soy lecithin, potassium sorbate†, potassium phosphate dibasic, potassium chloride, sodium ascorbate, choline chloride, calcium carrageenan, cellulose gum, sodium benzoate†, high selenium yeast, high molybdenum yeast, alpha tocopheryl acetate, high chromium yeast, zinc sulfate, ferrous sulfate, niacinamide, alpha tocopherol (to preserve freshness), copper gluconate, calcium pantothenate, manganese sulfate, ascorbyl palmitate (to preserve freshness), thiamine hydrochloride, BHA/BHT (to preserve freshness), beta carotene, vitamin A palmitate, pyridoxine hydrochloride, riboflavin, folic acid, biotin, potassium iodide, phytonadione (vitamin K1), cyanocobalamin (vitamin B12), cholecalciferol (vitamin D3). Product information and values are subject to change. Ingredient and nutrition information current as of April 2008. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2011 Report Share Posted March 1, 2011 This email below is written by my best friend who is looking for advice. Any help will be greatly appreciated. Many thanks! Margo My 22-year-old son suffered a serious spinal injury and has been confined to an ICU for the past 3 weeks. Yesterday he received a tracheostomy, in place of a breathing tube down his throat. Since he's been under ICU care, he has received only Nestle's Impact formula* as sustenance, and I am very concerned that he's never needed a nutrient dense food-based diet more than right now. We have been told that he may remain on tube feedings for several more weeks or even months. The dietician feels he's receiving proper nutrition, and is so far unwilling to allow augmentation or supplementation to this formula. In addition to being critically injured and paralyzed in arms & legs, my son is battling hospital contracted pneumonia, c-diff intestinal infection, and the trach renders him unable to speak or eat normally. In short, despite heroic efforts of excellent neurosurgeons, my son became ill, almost from the moment he entered the door of the ICU. Nutrition--food as medicine--appears to be the last consideration there. My question: I am trying to research some sort of supplementation that will easily pass through a feeding tube--one which the dietician cannot claim may clog the tube or object to for other reasons (ie she claims no added probiotics may be added because of concerns/liabilities re contracting meningitis). As his mom, I'm more than willing to sign release of liability, and am happy to prepare, administer, etc any supplementation-- however, this plea appears to fall on deaf ears. I thought of preparing bone broths, wheatgrass juice, sauerkraut juice, healthy oils, ie flax & cod liver oils....below are the ingredients of the Impact formula. Do you have any suggestions or knowledge about these matters?? Thank you so very much for your help. Impact Ingredients Water, maltodextrin, sodium caseinate (milk protein), palm kernel oil, L-arginine, calcium caseinate, refined menhaden oil, citric acid, sunflower oil, potassium citrate, calcium phosphate tribasic, yeast extract, cellulose gel, sodium citrate, methylparaben†, magnesium chloride, hydroxylated soy lecithin, potassium sorbate†, potassium phosphate dibasic, potassium chloride, sodium ascorbate, choline chloride, calcium carrageenan, cellulose gum, sodium benzoate†, high selenium yeast, high molybdenum yeast, alpha tocopheryl acetate, high chromium yeast, zinc sulfate, ferrous sulfate, niacinamide, alpha tocopherol (to preserve freshness), copper gluconate, calcium pantothenate, manganese sulfate, ascorbyl palmitate (to preserve freshness), thiamine hydrochloride, BHA/BHT (to preserve freshness), beta carotene, vitamin A palmitate, pyridoxine hydrochloride, riboflavin, folic acid, biotin, potassium iodide, phytonadione (vitamin K1), cyanocobalamin (vitamin B12), cholecalciferol (vitamin D3). Product information and values are subject to change. Ingredient and nutrition information current as of April 2008. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2011 Report Share Posted March 1, 2011 If you can get the doctor to write a scrip for protein supplement, Medicare and Medicaid will pay for Immunocal, which is a nutrient-dense undenatured whey isolate that is also a powerful health food for its glutathione production. One of the insurers requires enteric feeding and the other does not. Glutathione references: http://tinyurl.com/glutathione-references I would add a couple of tbsp stabilized rice bran to each meal; it's a very nutrient-dense food that's also sold as refined " solubles " but you can get it as full bran, full fat as well. If you use solubles you could add fiber from another source such as oat bran or psyllium. A tsp inulin 3x a day is proven to control bowel ecology without using a probiotic; inulin is researched to specifically modify/cure clostridia difficile, and also colostomy bag inflammation/infection. I think this info is in my inulin references: http://tinyurl.com/inulin-references My inulin references are rated #1 in a google search on inulin references and it's probably the best single source of prebiotic and probiotic research on the web. I'd also put a few drops of DHA/EPA oil in there; actually, a scoop of Gesundheit phytoplankton, <http://www.gesundheit.ca/products/nutrition.php> ....a very nutrient-dense whole food, will supply a very healthy spectrum of nutrients including EPA and DHA. And I'd make sure of 200 mcg selenium from selenium yeast, 1000 IU vitamin C, 6,000 IU vitamin D in the diet, the wheatgrass juice you mentioned or super greens. As a critique on the Impact ingredients, I wouldn't suggest the main ingredient of sodium caseinate is better than real food such as undenatured whey, or that cellulose is better than real stabilised bran. You could go right down the list and do better yourself, so I think your dietician will be in an excellent position to challenge the Impact mix with the ingredients I just mentioned and just a couple of others. What might more easily come about is one feeding of the " new stuff " per day, which will produce marvelous health benefits that the Impact won't. And the components can't clog a tube and are medically provable, which should satisfy him. all good, Duncan > > This email below is written by my best friend who is looking for advice. Any help will be greatly appreciated. Many thanks! Margo > > > My 22-year-old son suffered a serious spinal injury and has been confined to an ICU for the past 3 weeks. Yesterday he received a tracheostomy, in place of a breathing tube down his throat. Since he's been under ICU care, he has received only Nestle's Impact formula* as sustenance, and I am very concerned that he's never needed a nutrient dense food-based diet more than right now. We have been told that he may remain on tube feedings for several more weeks or even months. The dietician feels he's receiving proper nutrition, and is so far unwilling to allow augmentation or supplementation to this formula. In addition to being critically injured and paralyzed in arms & legs, my son is battling hospital contracted pneumonia, c-diff intestinal infection, and the trach renders him unable to speak or eat normally. In short, despite heroic efforts of excellent neurosurgeons, my son became ill, almost from the moment he entered the door of the ICU. Nutrition--food as medicine--appears to be the last consideration there. > > My question: I am trying to research some sort of supplementation that will easily pass through a feeding tube--one which the dietician cannot claim may clog the tube or object to for other reasons (ie she claims no added probiotics may be added because of concerns/liabilities re contracting meningitis). As his mom, I'm more than willing to sign release of liability, and am happy to prepare, administer, etc any supplementation-- however, this plea appears to fall on deaf ears. I thought of preparing bone broths, wheatgrass juice, sauerkraut juice, healthy oils, ie flax & cod liver oils....below are the ingredients of the Impact formula. Do you have any suggestions or knowledge about these matters?? Thank you so very much for your help. > > Impact Ingredients > Water, maltodextrin, sodium caseinate (milk protein), palm kernel oil, L-arginine, calcium caseinate, refined menhaden oil, citric acid, sunflower oil, potassium citrate, calcium phosphate tribasic, yeast extract, cellulose gel, sodium citrate, methylparaben†, magnesium chloride, hydroxylated soy lecithin, potassium sorbate†, potassium phosphate dibasic, potassium chloride, sodium ascorbate, choline chloride, calcium carrageenan, cellulose gum, sodium benzoate†, high selenium yeast, high molybdenum yeast, alpha tocopheryl acetate, high chromium yeast, zinc sulfate, ferrous sulfate, niacinamide, alpha tocopherol (to preserve freshness), copper gluconate, calcium pantothenate, manganese sulfate, ascorbyl palmitate (to preserve freshness), thiamine hydrochloride, BHA/BHT (to preserve freshness), beta carotene, vitamin A palmitate, pyridoxine hydrochloride, riboflavin, folic acid, biotin, potassium iodide, phytonadione (vitamin K1), cyanocobalamin (vitamin B12), cholecalciferol (vitamin D3). Product information and values are subject to change. Ingredient and nutrition information current as of April 2008. > Quote Link to comment Share on other sites More sharing options...
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