Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 > > Hi! I just started today my 3 1/2 years old daughter with MB12 > injections. What should I expect? There are 3 possibilities: 1. Nothing happens. Not very common. 2. Anger, aggression, agitation, lack of motivation and focus, lasting several months after stopping the shots. 20-30% incidence. 1 and 2 are the responses that incompetent physicians don't know about and unethical physicians pretend don't happen. Unfortunately some decent doctors also are unaware of this due to the unbelievable gullibility that is beaten into their head in medical school - they automatically believe what anothe doctor says when speaking at a conference without any critical thought at all, and may have to hurt a lot of people before they question it. Everyone talks a lot about 3. Remission of B-12 deficiency related neurological symptoms, which include: Increased or decreased reflexes Vision problems Lack of motivation Insomnia Slow thinking Abnormal smell or taste Impaired touch or pain perception Paresthesias (abnormal sensations, pain, or lack fo sensation in the hands and feet) Red smooth tip of the tongue Weakness Fatigue Abnormal gait Bed wetting, pants wetting Memory loss Disorientation Confusion Paranoia Depression Panic attacks These improvements are actually the most common response. If the child is not big enough to be difficult to control physically then there is no real question about giving MB12 a try since the problematic reaction isn't dangerous. If this is not true then careful thought should be given. I don't consider it responsible for physicians to just start on high dose shots without titrating up the dose of oral M-B12 (which is readily available) to ensure the agitation reaction doesn't occur at a low dose. The anger/agitation/aggression bit does last for months if you slam way too much methyl-b-12 into someone, and how much is too much varies dramatically from person to person. Andy. . . . . . .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 > > > > Hi! I just started today my 3 1/2 years old daughter with MB12 > > injections. What should I expect? > > There are 3 possibilities: > > 1. Nothing happens. Not very common. > > 2. Anger, aggression, agitation, lack of motivation and focus, lasting > several months after stopping the shots. 20-30% incidence. > > 1 and 2 are the responses that incompetent physicians don't know about > and unethical physicians pretend don't happen. Unfortunately some > decent doctors also are unaware of this due to the unbelievable > gullibility that is beaten into their head in medical school - they > automatically believe what anothe doctor says when speaking at a > conference without any critical thought at all, and may have to hurt a > lot of people before they question it. > > Everyone talks a lot about > > 3. Remission of B-12 deficiency related neurological symptoms, which > include: > > Increased or decreased reflexes > Vision problems > Lack of motivation > Insomnia > Slow thinking > Abnormal smell or taste > Impaired touch or pain perception > Paresthesias (abnormal sensations, pain, or lack fo sensation in the > hands and feet) > Red smooth tip of the tongue > Weakness > Fatigue > Abnormal gait > Bed wetting, pants wetting > Memory loss > Disorientation > Confusion > Paranoia > Depression > Panic attacks > > > These improvements are actually the most common response. > > If the child is not big enough to be difficult to control physically > then there is no real question about giving MB12 a try since the > problematic reaction isn't dangerous. If this is not true then careful > thought should be given. > > I don't consider it responsible for physicians to just start on high > dose shots without titrating up the dose of oral M-B12 (which is > readily available) to ensure the agitation reaction doesn't occur at a > low dose. > > The anger/agitation/aggression bit does last for months if you slam way > too much methyl-b-12 into someone, and how much is too much varies > dramatically from person to person. > > Andy. . . . . . .. Andy, Thank you for posting this information. We recently started our 3- year-old son on methyl-b-12/NAC shots and haven't seen any improvements. Instead, we've seen him lose eye contact, language and social interaction. He's also very easily angered and increasingly agitated. Our DAN! doc recommended that we start with 1000mcg daily. I have done quite a bit of research and know that Dr. Neubrander's protocol is drastically different. I asked about this and was told that this is a one-size-fits-all approach that isn't best for the child because it's not individualized. I talked with other parents doing the higher doses and felt comfortable moving forward. We started every other day and noticed no improvements but an increase in scripting. We then started every day injections and he had three really awesome days in behavior therapy. However, on Saturday, we added more NAC gel and an anti-inflammatory and he's gone downhill. The past three days of therapy have been a wash -- he's avoiding social interaction and just seems beside himself. It's very frightening. I have a call in to the doctor but am looking for any advice. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 I am very confused by this reply Andy. My son has been on the shot for 1 year and is doing extremely well. I don't see any positive effects mentioned. This parent may wish to know about the positive as well as the negative. > > > > Hi! I just started today my 3 1/2 years old daughter with MB12 > > injections. What should I expect? > > There are 3 possibilities: > > 1. Nothing happens. Not very common. > > 2. Anger, aggression, agitation, lack of motivation and focus, lasting > several months after stopping the shots. 20-30% incidence. > > 1 and 2 are the responses that incompetent physicians don't know about > and unethical physicians pretend don't happen. Unfortunately some > decent doctors also are unaware of this due to the unbelievable > gullibility that is beaten into their head in medical school - they > automatically believe what anothe doctor says when speaking at a > conference without any critical thought at all, and may have to hurt a > lot of people before they question it. > > Everyone talks a lot about > > 3. Remission of B-12 deficiency related neurological symptoms, which > include: > > Increased or decreased reflexes > Vision problems > Lack of motivation > Insomnia > Slow thinking > Abnormal smell or taste > Impaired touch or pain perception > Paresthesias (abnormal sensations, pain, or lack fo sensation in the > hands and feet) > Red smooth tip of the tongue > Weakness > Fatigue > Abnormal gait > Bed wetting, pants wetting > Memory loss > Disorientation > Confusion > Paranoia > Depression > Panic attacks > > > These improvements are actually the most common response. > > If the child is not big enough to be difficult to control physically > then there is no real question about giving MB12 a try since the > problematic reaction isn't dangerous. If this is not true then careful > thought should be given. > > I don't consider it responsible for physicians to just start on high > dose shots without titrating up the dose of oral M-B12 (which is > readily available) to ensure the agitation reaction doesn't occur at a > low dose. > > The anger/agitation/aggression bit does last for months if you slam way > too much methyl-b-12 into someone, and how much is too much varies > dramatically from person to person. > > Andy. . . . . . .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 Hello - [butting in here] . . . . I think you misunderstood. Look at number 3. It says REMISSION of B-12 related neurological problems . . . . then he lists those problems. That means the overwhelming majority will see improvements in those problems. Those are positive effects. As far as 1. and 2., I think he just listed those because a few people do react poorly to B-12 and he was just trying to provide complete information. Hope that helps. > > > > > > Hi! I just started today my 3 1/2 years old daughter with MB12 > > > injections. What should I expect? > > > > There are 3 possibilities: > > > > 1. Nothing happens. Not very common. > > > > 2. Anger, aggression, agitation, lack of motivation and focus, > lasting > > several months after stopping the shots. 20-30% incidence. > > > > 1 and 2 are the responses that incompetent physicians don't know > about > > and unethical physicians pretend don't happen. Unfortunately some > > decent doctors also are unaware of this due to the unbelievable > > gullibility that is beaten into their head in medical school - they > > automatically believe what anothe doctor says when speaking at a > > conference without any critical thought at all, and may have to > hurt a > > lot of people before they question it. > > > > Everyone talks a lot about > > > > 3. Remission of B-12 deficiency related neurological symptoms, > which > > include: > > > > Increased or decreased reflexes > > Vision problems > > Lack of motivation > > Insomnia > > Slow thinking > > Abnormal smell or taste > > Impaired touch or pain perception > > Paresthesias (abnormal sensations, pain, or lack fo sensation in > the > > hands and feet) > > Red smooth tip of the tongue > > Weakness > > Fatigue > > Abnormal gait > > Bed wetting, pants wetting > > Memory loss > > Disorientation > > Confusion > > Paranoia > > Depression > > Panic attacks > > > > > > These improvements are actually the most common response. > > > > If the child is not big enough to be difficult to control > physically > > then there is no real question about giving MB12 a try since the > > problematic reaction isn't dangerous. If this is not true then > careful > > thought should be given. > > > > I don't consider it responsible for physicians to just start on > high > > dose shots without titrating up the dose of oral M-B12 (which is > > readily available) to ensure the agitation reaction doesn't occur > at a > > low dose. > > > > The anger/agitation/aggression bit does last for months if you slam > way > > too much methyl-b-12 into someone, and how much is too much varies > > dramatically from person to person. > > > > Andy. . . . . . .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 > Thank you for posting this information. We recently started our 3- > year-old son on methyl-b-12/NAC shots and haven't seen any > improvements. Instead, we've seen him lose eye contact, language > and social interaction. He's also very easily angered and > increasingly agitated. > > Our DAN! doc recommended that we start with 1000mcg daily. I have > done quite a bit of research and know that Dr. Neubrander's protocol > is drastically different. I asked about this and was told that this > is a one-size-fits-all approach that isn't best for the child > because it's not individualized. Well, is your DAN! doctor's approach individualized? Can he explain how? I bet if you check this is his one size fits all approach. > I talked with other parents doing > the higher doses and felt comfortable moving forward. > > We started every other day and noticed no improvements but an > increase in scripting. We then started every day injections and he > had three really awesome days in behavior therapy. However, on > Saturday, we added more NAC gel and an anti-inflammatory and he's > gone downhill. The past three days of therapy have been a wash -- > he's avoiding social interaction and just seems beside himself. This could be the B-12 or it couild be the NAC. 1/3 or 1/2 of kids get worse, not better, on sulfury stuff like NAC. Obviously you could stop what you are doing and see if he improves. If it is the NAC it takes a few days to a week. If it is the B-21 it will take longer. If you don't have a plasma cysteine result you might want to get that done and withhold sulfury supplements pending the results. Andy . . . . . . . . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 Note that the poll results on this listserv, of 40+ parents, do not show these negative results in more than 1% of kids > > > Thank you for posting this information. We recently started our 3- > > year-old son on methyl-b-12/NAC shots and haven't seen any > > improvements. Instead, we've seen him lose eye contact, language > > and social interaction. He's also very easily angered and > > increasingly agitated. > > > > Our DAN! doc recommended that we start with 1000mcg daily. I have > > done quite a bit of research and know that Dr. Neubrander's protocol > > is drastically different. I asked about this and was told that this > > is a one-size-fits-all approach that isn't best for the child > > because it's not individualized. > > Well, is your DAN! doctor's approach individualized? Can he explain > how? I bet if you check this is his one size fits all approach. > > > I talked with other parents doing > > the higher doses and felt comfortable moving forward. > > > > We started every other day and noticed no improvements but an > > increase in scripting. We then started every day injections and he > > had three really awesome days in behavior therapy. However, on > > Saturday, we added more NAC gel and an anti-inflammatory and he's > > gone downhill. The past three days of therapy have been a wash -- > > he's avoiding social interaction and just seems beside himself. > > This could be the B-12 or it couild be the NAC. 1/3 or 1/2 of kids get > worse, not better, on sulfury stuff like NAC. > > Obviously you could stop what you are doing and see if he improves. If > it is the NAC it takes a few days to a week. If it is the B-21 it will > take longer. > > If you don't have a plasma cysteine result you might want to get that > done and withhold sulfury supplements pending the results. > > Andy . . . . . . . . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 > 2. Anger, aggression, agitation, lack of motivation and focus, lasting > several months after stopping the shots. 20-30% incidence. This was my #3 on oral B12 until I reduced the dose and added folic acid. Fortunately, it only took about 3-4 days for the problems to go away. But then, I used ORAL B12. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 > Thank you for posting this information. We recently started our 3- > year-old son on methyl-b-12/NAC shots and haven't seen any > improvements. Instead, we've seen him lose eye contact, language > and social interaction. He's also very easily angered and > increasingly agitated. Try adding folic acid, B12 causes anger and frustration for my #3 without folic acid. I also had to start at a lower dose and gradually work up. You also might need to drop the NAC [it is commonly not tolerated] and just keep the B12. For my kids, B12 causes scripting and loss of language and focus unless given with TMG, so you can try adding that if you want. > Saturday, we added more NAC gel and an anti-inflammatory and he's > gone downhill. Drop those, see if that helps. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 For the next 6 weeks we will be adding video of parents discussing the effects MB12 has had on their children, both the positive and all side effects they experience. Also, when I can get before and after video this will be added. We intend to get 20-30 videos up in the the next 6 weeks. There is a lot of misinformation on the Net about MB12 as to the method of getting it into the body, side effects, expected results, etc. Hopefully these videos will help parents looking for treatment options for their children to make an informed choice regarding MB12. Currently we have 14 parents and 2 before and after videos. NOTE: The MB12 protocol is FREE to ANY physician that calls our office and requests it. To see the videos, goto www.drneubrander.com and then select the Videos tab. Rick Neubrander Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2005 Report Share Posted April 30, 2005 There is some numbing stuff you can use while giving your child the shots. Ask your Dr. about it. I can remember what it is called. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2005 Report Share Posted April 30, 2005 In a message dated 4/30/2005 5:19:25 PM Pacific Standard Time, michelle101291@... writes: > For those of you who have given your kids MB12 injections - how long were > you on them? My 3yr. old son's DAN Dr. recently started him on the > injections. She wants him on them for one week to see how he does. She thinks we'll > see improvements in that short of time. Does this sound reasonable? NO. It can take several months before postive improvements are seen. You should familiarize yourself with Dr. Jim Neubrander's web site. It will explain why this is so, and give you lots of other useful information. I'm really surprised that your DAN would think this. http://www.drneubrander.com > > There is sooo much fluid in the injections (3cc's) and my son screams bloody > murder for a 1/2 hour after the injection then falls asleep for at least an > hour. His little bottom is bruised so badly - I don't know if we are giving > them right or if this is normal. My husband thought of splitting the dosage > in 1/2 and giving him a shot in the am and pm. Has anyone ever done this? This should not be happening. My son barely flinches when I give him his shots at night. It should not be painful - I gave myself one, just to be sure, and I could barely feel it. There's something wrong with the protocal your doc is using. I have never heard of anyone's child " screaming bloody murder " or being " bruised. " That's outrageous - should absolutely NOT be happening. I would not give your son any more of those shots if I were you. Consult the web site - Neubrander is the doctor who is the expert on the MB12 protocal - and insist that your DAN follow the protocal exactly. Really - throw away those shots!!! > > I'm anxious to give the injections a try (recently found out he's deficient > in the B vitamins, folic acid, magnesium just to name a few) but don't want > to torture the child, either. We've noticed positive changes, especially cognitive changes and a huge increase in creative play. His speech is also freer and faster - less hesitation going on. If you don't mind me asking, who IS your DAN doctor? > > Thanks in advance for your feedback. > (mom to - epilepsy) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2005 Report Share Posted April 30, 2005 We see Dr. Patel in Buffalo, NY. I'll look into Dr. Neubrander's site. THANKS! bellaboo625@... wrote: In a message dated 4/30/2005 5:19:25 PM Pacific Standard Time, michelle101291@... writes: > > There is sooo much fluid in the injections (3cc's) and my son screams bloody > murder for a 1/2 hour after the injection then falls asleep for at least an > hour. His little bottom is bruised so badly - I don't know if we are giving > them right or if this is normal. My husband thought of splitting the dosage > in 1/2 and giving him a shot in the am and pm. Has anyone ever done this? If you don't mind me asking, who IS your DAN doctor? > > Thanks in advance for your feedback. > (mom to - epilepsy) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2005 Report Share Posted April 30, 2005 Hi Mechelle, Your child's reaction of screaming " bloody murder " was my only fear of giving B12 shots when I first heard about them. Then I learned about the rare cases of the deadly anaphylactic reaction which can happen right away or occur years later! So even though it's maybe not as good -we just make sure there is lots of B12 in the diet. (some due believe that's just as good) " Both oral and injectable vitamin B12 supplements are used to treat pernicious anemia. In those who lack sufficient intrinsic factor and cannot absorb vitamin B12, it is usually given by injection, although there is evidence that oral administration in high enough doses is effective.6 An intranasal gel is also available. " http://www.althealth.co.uk/services/info/supplements/vitamin_b12_1.php Is this your DAN doctor? http://www.autismwebsite.com/ari-lists/us/Kalpana_Patel_%20M.D..html What does he have to say about the bad bruising, screaming, and sleeping for awhile after the shots? (Did you ask him about this?) Since your son has epilepsy and I'm guessing a speech delay/disorder -have you heard about pediatric neurologist Dr. Mike Chez from Chicago? He's not a DAN! doctor (through the grapevine heard he was " attacked " by DAN!!!!) There are members here who swear by Dr. Chez who because of his methods have seizure free children (with increased speech too!) Do you know about carn-aware/Dr. Chez? (again if you are 'only' into DAN -you wouldn't from what I've heard) http://icdl.com/chez.html http://www.speechville.com/alternative-therapy/carnosine.html http://www.althealth.co.uk/services/info/supplements/carnosine_uses.php http://www.althealth.co.uk/services/info/misc/carnosine_and_autism.php http://www.lks-norge.com/CSWS-ESES.htm http://www.geocities.com/fishstep/carnosine.html Autism Spectrum Disorder: Neurobiological Correlations G. Chez, M.D. Lake Forest, IL 60045 mchezmd@... 847-735-0300 Fax: 847-735-0400 Here is more on B12 vaccines (again-this is just for vaccines -not oral) While oral vitamin B12 is not generally associated with any side effects - there is " occasional allergic reactions to B12 injections " http://www.globalherbalsupplies.com/vitamin_information/vitamin_b.htm Oral vitamin B12 supplements are not generally associated with any side effects. Although quite rare, serious allergic reactions to injections of vitamin B12 (sometimes even life-threatening) have been reported.29 30 Whether these reactions are to the vitamin itself, or to preservatives or other substances in the injectable vitamin B12 solution, remains somewhat unclear. Most, but not all, injectable vitamin B12 contains preservatives. http://www.kroger.com/hn/Supp/Vitamin_B12.htm VITAMIN B-12 Synonym: Cobalamin Toxicity: Allergic reactions may occur with high doses. http://pages.prodigy.net/naturedoctor/vitamins.html And from an archive: From: " kiddietalk " <kiddietalk@...> Date: Fri Jan 28, 2005 6:26 pm Subject: Re: kids dying from the shots site? kiddietalk Sorry Colleen -mixed up what you were asking for. Hope the following helps: (searched under cobalamin in addition to B12) Hovding G. Anaphylactic reaction after injection of vitamin B12. Br Med J 1968;3:102. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=5\ \662949 & dopt=Abstract Anaphylactic reaction to vitamin B12 appearing after several years of therapy. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\ \ct & list_uids=7270329 Volume 59 Issue 9 Page 1023 - September 2004 doi:10.1111/j.1398-9995.2004.00507.x ALLERGY Net Adverse reactions to vitamin B12 injections due to benzyl alcohol sensitivity: successful treatment with intranasal cyanocobalamin http://www.blackwell-synergy.com/links/doi/10.1111/j.1398-9995.2004.00507.x/abs/ And interesting letter: Snowden JA, Chan-Lam D, SE, Ng JP. Oral or parenteral therapy for vitamin B12 deficiency. Lancet 1999;353:411 [letter]. http://www.rondellen.net/publisher08_eng.htm And a list of symptoms which can be seen in a B12 deficiency. From a medical textbook. Goldman: Cecil Textbook of Medicine, 21st Ed., Copyright © 2000 W. B. Saunders Company page 865 TABLE 163-4 -- NEUROPSYCHIATRIC ABNORMALITIES * THAT MAY BE CAUSED BY COBALAMIN DEFICIENCY Neurologic Abnormalities Paresthesia Impaired vibration sense Impaired position sense Impaired touch or pain perception Ataxia Abnormal gait Fatigue Memory loss Disorientation Obtundation Decreased reflexes Weakness Decreased muscle strength Romberg's sign Increased reflexes Spasticity Babinski's sign Lhermitte's sign Urinary or fecal incontinence Urinary urgency or nocturia Impotence Abnormal smell or taste Decreased vision or optic atrophy Psychiatric Abnormalities Depression Paranoia Listlessness Acute confusional state Hallucinations Insomnia Apprehensiveness Psychosis Slow mentation Paraphrenia Mania Panic attacks Personality change Suicide *These abnormalities may be present in any number or combination in a given patient. They are seen frequently with or without any of the hematologic or other abnormalities listed in Table 163-3 . ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2005 Report Share Posted April 30, 2005 Hi : We have been using Methylcobalamin injections on my son since Jan.2005. We administer them every third day. We use emla cream to numb the site first and then we inject. He never even flinches. The needle is very small and the syringes come prefilled with very little fluid. He has never bruised. I am not sure how old your son is or how you give the shots but we do them subcutaneous in his bottom and it has been one of the easiest things. Some parents even do them while their child is sleeping. Dr. Neubrander does have a video on his website of parents administering shots and instructions. We see a DAN doctor and use Carnaware. Our DAN doctor who is also a pedi has never said anything negative about the carnaware and actually recommended us to continue to use it. My son is very delayed with expressive language and has been diagnosed with apraxia. I am not sure if it is just coincidence, his age , a new occupational therapist or the biomedical approach but in the last month his speech is really taking off. However I firmly believe every child is different and that is why groups like these are so important. As a parent you can post what is and is not working with your child and get suggestions and support from parents who have actually been there. Kim michelle paulson <michelle101291@...> wrote: We see Dr. Patel in Buffalo, NY. I'll look into Dr. Neubrander's site. THANKS! bellaboo625@... wrote: In a message dated 4/30/2005 5:19:25 PM Pacific Standard Time, michelle101291@... writes: > > There is sooo much fluid in the injections (3cc's) and my son screams bloody > murder for a 1/2 hour after the injection then falls asleep for at least an > hour. His little bottom is bruised so badly - I don't know if we are giving > them right or if this is normal. My husband thought of splitting the dosage > in 1/2 and giving him a shot in the am and pm. Has anyone ever done this? If you don't mind me asking, who IS your DAN doctor? > > Thanks in advance for your feedback. > (mom to - epilepsy) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2005 Report Share Posted May 2, 2005 just a couple of things. Unfortunatley if resolving Charlies nutritional deficiencies were just a case of " making sure there was lots ...in his diet " then i would have saved myself three years of blood sweat and tears. Charlie will not take on half of these through food and even if he could, his body simply cannot process them. Leaky gut does not let the equation 'good food = good nutrition' work.I cook , I bake , i buy organic, I spend days caoxing apples or rice down him and all his tests show nutritional deficiencies. GFCF upped them a bit but they are still poor and only now improving. (Nearly normal on zinc for the first time ever - Yeh !!!! ) I find a couple of your following comments really puzzling. I have been dipping in and out of the site as we have been busy, and away on hols, and visiting with my mum. I have heard of Dr Chez and i have heard of Dr Neubrander. I admire both. Are we supposed to be picking teams because i missed the bit when this became a competition. I don't understand why using DAN might mean that your wouldn't have heard of him? I have never heard him attacked. Do you actually mean attacked by DAN - as in the DAN organisation have denounced him ? I would find that odd. Or do you mean that someone who advocates or uses DAN did so? Because that is a very different matter. Much like the Doctor who attacked me here ( as a religious fanatic, scientologist to be specific, who was plotting stuff against soemone , I can't quite remember who). I took that as being a slightly barmy response from an individual person and not the considered views of the founders of this website. I hope you don't mind me raising this with you as i have been so befuddled by very aggressive or antagonistic postings in the last month or so and didn't want to reply to those posters as it may " up the ante " . I have been in contact with you for several years now ansd i trust that i can ask what is bothering me without being suspected of trying to stir things up.You KNOW i respect your work here and with our kids enormously and , whilst we have seen things differently at time, I have always felt we share a passion for our kids. I have long thought that our kids are different and the routes we take may vary but our destination is the same. As we travel differnt paths i am still keen that we may all be companions. But the tension is palpable and it leaves me a bit bewidered. I find sarcasm and bitching when our childrens health is at stake so bizare ( Can i stress that i refer to the tone in the last couple of months not to any individual post.) Why would anyone responding to another parent who shares their sadness and their hope, choose to post in a taunting and point scoring way? Why are we not rejoicing that our options for our children seem to be expanding. Your son has done well on what you and this site so wonderfully advocate and support. But you know that that was never going to be enough for my son and maybe not for other parents here. I agree with you that DAN is not the only approach and I also agree that it should not even necessarily be the first - but it is not bad and it is not the enemy. Nor are the people that advocate it. Yet this seems to be an undertone in posts I have been reading and it makes me sad. I don't understand? Deborah > Hi Mechelle, > > Your child's reaction of screaming " bloody murder " was my only fear > of giving B12 shots when I first heard about them. Then I learned > about the rare cases of the deadly anaphylactic reaction which can > happen right away or occur years later! So even though it's maybe > not as good -we just make sure there is lots of B12 in the diet. > (some due believe that's just as good) > " Both oral and injectable vitamin B12 supplements are used to treat > pernicious anemia. In those who lack sufficient intrinsic factor and > cannot absorb vitamin B12, it is usually given by injection, > although there is evidence that oral administration in high enough > doses is effective.6 An intranasal gel is also available. " > http://www.althealth.co.uk/services/info/supplements/vitamin_b12_1.php > > Is this your DAN doctor? > http://www.autismwebsite.com/ari-lists/us/Kalpana_Patel_% 20M.D..html What does he have to say about the bad bruising, > screaming, and sleeping for awhile after the shots? > (Did you ask him about this?) > > Since your son has epilepsy and I'm guessing a speech > delay/disorder -have you heard about pediatric neurologist Dr. Mike > Chez from Chicago? He's not a DAN! doctor (through the grapevine > heard he was " attacked " by DAN!!!!) > There are members here who swear by Dr. Chez who > because of his methods have seizure free children (with increased > speech too!) Do you know about carn-aware/Dr. Chez? > (again if you are 'only' into DAN -you wouldn't from what I've heard) > > http://icdl.com/chez.html > http://www.speechville.com/alternative-therapy/carnosine.html > http://www.althealth.co.uk/services/info/supplements/carnosine_uses.ph p > http://www.althealth.co.uk/services/info/misc/carnosine_and_autism.php > http://www.lks-norge.com/CSWS-ESES.htm > http://www.geocities.com/fishstep/carnosine.html > > Autism Spectrum Disorder: Neurobiological Correlations > G. Chez, M.D. > Lake Forest, IL 60045 > mchezmd@i... > 847-735-0300 > Fax: 847-735-0400 > > > Here is more on B12 vaccines (again-this is just for vaccines -not > oral) > > While oral vitamin B12 is not generally associated with any side > effects - there is " occasional allergic reactions to B12 injections " > http://www.globalherbalsupplies.com/vitamin_information/vitamin_b.htm > > Oral vitamin B12 supplements are not generally associated with any > side effects. > > Although quite rare, serious allergic reactions to injections of > vitamin B12 (sometimes even life-threatening) have been reported.29 > 30 Whether these reactions are to the vitamin itself, or to > preservatives or other substances in the injectable vitamin B12 > solution, remains somewhat unclear. Most, but not all, injectable > vitamin B12 contains preservatives. > http://www.kroger.com/hn/Supp/Vitamin_B12.htm > > > > VITAMIN B-12 > Synonym: Cobalamin > > Toxicity: Allergic reactions may occur with high doses. > http://pages.prodigy.net/naturedoctor/vitamins.html > > > > And from an archive: > > > > From: " kiddietalk " <kiddietalk@y...> > Date: Fri Jan 28, 2005 6:26 pm > Subject: Re: kids dying from the shots site? kiddietalk > > Sorry Colleen -mixed up what you were asking for. Hope the > following helps: (searched under cobalamin in addition to B12) > > Hovding G. Anaphylactic reaction after injection of vitamin B12. Br > Med J 1968;3:102. > > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=PubMed & list_uids=5\662949 & dopt=Abstract > > Anaphylactic reaction to vitamin B12 appearing after several years > of therapy. > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=pubmed & dopt=Abstra\ct & list_uids=7270329 > > Volume 59 Issue 9 Page 1023 - September 2004 > doi:10.1111/j.1398-9995.2004.00507.x > > > ALLERGY Net > Adverse reactions to vitamin B12 injections due to benzyl alcohol > sensitivity: successful treatment with intranasal cyanocobalamin > http://www.blackwell-synergy.com/links/doi/10.1111/j.1398- 9995.2004.00507.x/abs/ > > And interesting letter: > > Snowden JA, Chan-Lam D, SE, Ng JP. Oral or parenteral therapy > for vitamin B12 deficiency. Lancet 1999;353:411 [letter]. > http://www.rondellen.net/publisher08_eng.htm > > And a list of symptoms which can be seen in a B12 deficiency. From a > medical textbook. Goldman: Cecil Textbook of Medicine, 21st Ed., > Copyright © 2000 W. B. Saunders Company page 865 TABLE 163-4 -- > NEUROPSYCHIATRIC ABNORMALITIES * THAT MAY BE CAUSED BY COBALAMIN > DEFICIENCY > Neurologic Abnormalities > Paresthesia > Impaired vibration sense > Impaired position sense > Impaired touch or pain perception > Ataxia > Abnormal gait > Fatigue > Memory loss > Disorientation > Obtundation > Decreased reflexes > Weakness > Decreased muscle strength > Romberg's sign > Increased reflexes > Spasticity > Babinski's sign > Lhermitte's sign > Urinary or fecal incontinence > Urinary urgency or nocturia > Impotence > Abnormal smell or taste > Decreased vision or optic atrophy > Psychiatric Abnormalities > Depression > Paranoia > Listlessness > Acute confusional state > Hallucinations > Insomnia > Apprehensiveness > Psychosis > Slow mentation > Paraphrenia > Mania > Panic attacks > Personality change > Suicide > *These abnormalities may be present in any number or combination in > a given patient. They are seen frequently with or without any of the > hematologic or other abnormalities listed in Table 163-3 . > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2005 Report Share Posted May 2, 2005 Hi Deborah, I'm not sure why Dr. Chez was attacked by some DAN doctors Deborah. It's only going to be speculation on my part because I never asked. I've heard nothing but good things about Dr. Chez from his patients here -but don't know him personally. Just know he was attacked by DAN for some reason. Perhaps it wasn't the carn-aware that was attacked- and it was just to him? Was it due to this? http://www.autisme.net/secret-march99.html (5th paragraph down) I don't know. I know that people that go to pediatric neurologist Dr. Chez that post here love him and say he cares about the children -helps them. People that go to DAN say the same thing. Do I know the whole story behind what the attack is? No -again didn't ask. Also -didn't hear anything negative about DAN from his side. And Deborah -if my tone about B12 shots sounded negative I was addressing a post that wasn't a happy one. I was addressing 's post about her child's screaming, bruising and sleeping from B12 shots-which is why I posted that the 'only' side effects from B12 were from shots -not from other forms -to let her know in case for her child she needs to explore other ways to get B12 into 'her' child. Warning signs are not a negative -here in the US they have commercials for drugs and have to also say any potential side effects at the end -which at times is funny. (BE HAPPY! with a chance of liver or heart damage, sometimes severe, weight gain, and sexual dysfunction) Severe side effects from B12 shots are rare. However a child screaming bloody murder for a 1/2 hour and with bad bruising and then sleeping for an hour after a B12 shot -that's very rare too, right? Was it the shot -or where it was given -I don't know - was just making suggestions. I am fully aware that many use B12 shots, and have for years mainly for seniors. As I've posted before -Tanner is doing great so there really is no reason for us to introduce anything outside of stuff that we would want to do normally. I'm a big wimp with needles myself -so if it there are easier ways like a patch -I'm all for it. Either way -the amount of B12 Tanner gets in his diet probably for him is enough. For those that need to use shots however - having a bit more information is a good thing. At least that's how I meant it. I am fully aware that we each are here because we care for and love a child that is unique -and priceless. ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2005 Report Share Posted May 2, 2005 Why did I find posting about Dr. Chez important? Again back to who posted about her child with epilepsy who appears to have a child having concerning reactions to B12 shots. And, I wasn't posting my feelings on anything I wrote. I didn't speak to DAN doctors who criticized Dr. Chez. I was booking this conference http://www.cherab.org/news/nc2003-conference.html in 2003 and know what I know right from the source. I don't recall anyone here saying that DAN is a cult. A cult would probably mean any question would be viewed as an attack. http://www.rickross.com/warningsigns.html As far as your other concerns. I agree it's rare for there to be any allergic reaction to B12 -but the only reported cases are always with shots of B12 and never at all for other methods -including the " intranasal gel " . If 's child's reaction of screaming for 1/2 hour, brusing and sleeping for an hour is that unusual -then why as a group are we not all realizing that yes...'here' is a child with a possible severe negative reaction who is under the care of a DAN doctor? Don't shoot the messenger -especially the one with the problem or the one trying to help. Numbing the skin may not be the answer. If a negative reaction due to allergy of injectionable forms of B12 can happen in adults. Then each that allows that intervention in adults or children needs to be aware that there may be a rare side effect which could be severe. We need to be aware of the warning signs. I mean there probably are warning signs first, like there are in all allergies. Let's hope it's not just a sudden thing. For a doctor to post this has never happened in children -all I can say is Thank God! And... when he says " Rick, please respond to whatever group posted the " anaphylactic issue " and let them know that whoever made this comment does not understand the biochemistry of methyl-B12 nor the immunological response of an anaphylactic reaction! First, anaphylaxis is an immediated immune system response and is not a delayed response, ever! " Does this person think I wrote this study? Anaphylactic reaction to vitamin B12 appearing after several years of therapy. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=7\ 270329 & dopt=Abstract Volume 59 Issue 9 Page 1023 - September 2004 doi:10.1111/j.1398-9995.2004.00507.x 's child had a reaction. Maybe it's mild reaction, perhaps it's moderate or a sign that it could lead to something more severe. I don't know or her child...and I'm not an MD. But even still I don't believe anyone, especially an MD, should 'assume' that because no other child has had a reaction to date that a reaction is not possible. I mean really -outside of a select but growing group -how many parents do you know that give their child B12 shots in society? How many children received vaccines before 'some' had reactions/regressions. Doesn't this group, this group especially (!) understand the frustration of nobody taking " vaccine causes " seriously enough? If 's child can take oral B12, or some other form instead -and with a guarantee through years of history of no side effects, and with positive effects, then that may be good to know for all -even those of you who now give shots. Wouldn't that be good to know? More I'm sure would try it then too. And yes -as an advocate for children I'm here to allow all sides to be aired -all sides -even those that attack my beliefs. Nobody is beyond that, and no intervention is perfect for all. Again -the only possible side effects are from the injected forms of B12 -not the other forms. Some of the links I posted...but I'll move the one link up -since it appears to be correct: (a letter which predicts " It is reasonable to assume that the oral versus parenteral B12 discussion will flare shortly " ) Snowden JA, Chan-Lam D, SE, Ng JP. Oral or parenteral therapy for vitamin B12 deficiency. Lancet 1999;353:411 [letter]. http://www.rondellen.net/publisher08_eng.htm " Here is more on B12 vaccines (again-this is just for vaccines -not oral) While oral vitamin B12 is not generally associated with any side effects - there is " occasional allergic reactions to B12 injections " http://www.globalherbalsupplies.com/vitamin_information/vitamin_b.htm Oral vitamin B12 supplements are not generally associated with any side effects. Although quite rare, serious allergic reactions to injections of vitamin B12 (sometimes even life-threatening) have been reported.29 30 Whether these reactions are to the vitamin itself, or to preservatives or other substances in the injectable vitamin B12 solution, remains somewhat unclear. Most, but not all, injectable vitamin B12 contains preservatives. http://www.kroger.com/hn/Supp/Vitamin_B12.htm Hovding G. Anaphylactic reaction after injection of vitamin B12. Br Med J 1968;3:102. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\ ct & list_uids=5662949 Anaphylactic reaction to vitamin B12 appearing after several years of therapy. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=7\ 270329 & dopt=Abstract Volume 59 Issue 9 Page 1023 - September 2004 doi:10.1111/j.1398-9995.2004.00507.x [Agranulocytosis and impairment of liver functions terminating in death following vitamin B12 injection in pernicious anemia: report of a case] http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\ ct & list_uids=6533326 A case of vitamin B12 allergy is reported. Typical eczematous and exanthematic skin lesions appeared after long-term and high-dosed intake of a vitamin B12 drug (Biovital). Patch tests with vitamin B12 were positive. This observation of vitamin B12 allergy we compared with previous published cases. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\ ct & list_uids=146027 ALLERGY Net Adverse reactions to vitamin B12 injections due to benzyl alcohol sensitivity: successful treatment with intranasal cyanocobalamin http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\ 5291924 & dopt=Abstract http://www.blackwell-synergy.com/links/doi/10.1111/j.1398-9995.2004.00507.x/abs/ What do you guys know about intranasal B12? http://www.mercola.com/1997/archive/intranasal_b12.htm " For years, B12 shots have been an unofficial treatment for fatigued, run down, or depressed patients. (Large oral doses are very poorly absorbed, though sublingual and intranasal B12 formulations appear to give injections a run for their money.) " http://www.mts.net/~baumel/B12.html I'm posting what I am in concern, not anger. All can be questioned here -even me and you. ...And even B12 'shots'. If some of you are still upset by me posting the links I did -please explain how I've misunderstood them. Even better - -please let us know how your child is doing -and what was said to you by your child's MD? ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2005 Report Share Posted May 2, 2005 do or does anyone know for sure what method Dr. Patel is using in regards to B12 shots for 's child? Is it possible it could be Dr. Neubrander's method? Dr. Patel has spoken at a DAN conference, and appears from the links I've found on her to be a respected pediatrician. Can someone that knows Dr. Neubrander's method call and ask Dr. Patel and explain why we are asking? http://www.autismwebsite.com/ari-lists/us/Kalpana_Patel_%20M.D..html http://www.aaem.com/part%20iii%20basic%20addendum.htm http://www.upsb.org/xq/asp/code.945/qx/html_patient/physician.htm Dr. Patel even spoke for a celiac group (I had celiac disease as a baby and used to live in NY -she could have been my doctor!) She sounds wonderful: " Dr. Kalpana Patel, M.D., is an elite member of a prestigious medical specialty which treats patients with a broad range of medical and health conditions using a variety of safe and effective methods. Dr. Patel is highly credentialed and some of her affiliations include: President of the American Board of Environmental Medicine, Diplomat American Board of Chelation Therapy, Diplomat American Board of Environmental Medicine, American College of Advancement of Medicine, Clinical Assistant Professor of Pediatrics at the State University of New York at Buffalo since 1973, Fellow American Academy of Pediatrics, Certified training in Hyperbaric Oxygen Therapy by the Nix Hospital in San , Texas, and Former Chief of Pediatrics at Buffalo Deaconess Hospital. Dr. Patel trains other physicians both nationally and internationally in food allergy diagnosis, treatment, nutrition, and other health related topics. Dr. Patel is personally familiar with the gluten free (and casein free) diet as she has been gluten free and milk free for many, many years. " http://www.buffaloglutenfree.org/meetings_programs.html To call Dr. Patel and ask -that's one way to get to the bottom of this to know if something could have been done different, or if this is a rare reaction in spite of everything being done as per the correct protocol. And when you ask: " By a " delayed response " were you meaning a response that occurred several years after an Mb12 shot was administered when a person wasn't currently receiving shots - as in, stands a chance of going into shock 10 years from yesterday, when he received a shot - or did you mean that after several years of receiving shots, an allergic reaction occurred immediately following a shot when it hadn't with previous shots? I have a hunch that you meant the latter, but I think Dr. Neubrander thought you meant the former " I posted the PubMed link which I shouldn't have assumed was clear what I meant, but yes -I too of course meant the latter! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2005 Report Share Posted May 2, 2005 Hi : I just read your post but I do not know if I will be of any help but my son does the mb12 injection every third day but daily we supplement folinic acid and TMG both are supplements that are suppose to enhance the effectiveness of the injections. My son's magnesium levels were fine. So we did not explore that path. I really would try the EMLA cream the next time you try the injections. I worked on a pedi unit for seven years and we used EMLA before IV sticks and port accesses and really kids told me they did not feel a thing. The hardest part for our son is the awkwardness of having the injection on his bottom. My husband distracts him while I do the injection he has never seen the needle or me injecting. He flinches more with the cold alcohol wipe then the injection. Kim michelle paulson <michelle101291@...> wrote: For those of you who have been following the posts regarding the MB12 injections - I just talked to my DAN Dr. and told her about the bruising/screaming. Though she was empathetic - her suggestion was to lower the amount of fluid. She said that since my son had a magnesium deficiency - it was critical that he get magnesium delivered by injection (or intravenously) b/c w/out the proper balance - the B12 wouldn't work. Thus, the reason for the longer needle - that magnesium needs to be delivered into the muscle not subcutaneously directly under the skin. Since higher amounts of oral magnesium results in diahrrea, she doesn't recommend upping his oral dose. I have no idea if this even makes sense. My son's magnesium level was 36 and the reference range was 40-80. He was also deficient in Folate (is it formiminoglutamate) - anyway - that number was 1.33 which is high - apparently, high numbers (should be less than .93)indicate a folic acid deficiency which is why she also added folic acid to her " special serum " . So, she recommended boosting his folic acid and magnesium orally - and to try the B12 shots later. Does this make any sense? I was so anxious to try the B12 injections but since I know so very little about deficiency's and how things interact w/one another, once again, I'm placed in a position of having to " trust " her. If it's not " critical " that his magnesium be higher, I could try to get my pediatrician or neuro. to write the script. Any info. you have to share would be greatly appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Dear , Screaming bloody murder and bruises sounds like there's something amiss. Could be your technique (you're not getting it at a shallow enough angle, you're getting it into the butt muscle, not the fat). Could be the needles or the MB12. Hopewell, Wellness and Coastal Compounding pharmacies are the only recommended suppliers I've heard of thus far (though there may be others, you need to check around on the lists and with your doctor). Don't buy it for cheaper from somewhere else. Definintely follow Dr. Neubrander's protocol to the " T. " I would suggest checking with your doctor and looking at this website by Dr. Neubrandeer, the doctor who has developed the technique and has published peer reviewed literature on the effects of MB12 subcutaneous shots. http://www.drneubrander.com/page2.html As to the anaphylactic shock, we had this discussion back in January. Below is the medical literature I found at that time listed on PubMed on B12 shots and anaphylactic shots. There is no documentation that suggests that subcutaneous MB12 injections have EVER caused anaphylactic shock. In several cases it was found to be the adjuvants that was the cause. Never was methylB12 involved. Please remember that no one on this list is trained or licensed to give you medical advice. No one. Talk to your doctor. Call Dr. Neubrander and ask about the longer needles (sounds like that could be the culprit), or the things that are being added. Question your doctor about using the folinic acid and magnesium in the shots. Ask Dr. Neubrander about this, even. I know that children with Cerebral Folate Deficiency who are getting up to 30 Mgs (NOT mcgs) daily of folinic acid (extremely high doses) are taking this orally, so there may be little reason for using the injectible form. I suspect that the magnesium could also go oral or transdermal in the form of a cream. Keep searching for a reputable second opinion and keep pushing your doctor. Anyway, that's what I'd do. Best and kisses to your little one, Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Hi Folks: I've been away for awhile - and am actually expecting my second baby any day - but the brouhaha over the methyl B12 shots showed up on one of the other lists I frequent (CK2) and I read Dr. Neubrander's response (which I see Colleen was nice enough to post) and I just felt I had to " stop by " and say something. I feel this is an absolutely wonderful list for information about the " traditional " therapies like speech and OT and how to negotiate the school system and IEPs and the like. There probably isnt a better one out there. It is just a trove of wonderful information. And I personally learned quite a bit from the Late Talker book. But this list just ISNT the best place for information on biomedical treatments that might help apraxic kids. Why? In part that might be because the list IS so good at the other parts and it's hard for any one place to do everything well. But I have to be honest. I also feel that it is in part b/c the moderator is just not comfortable with - perhaps even actively resistant to - the notion that biomedical treatments are what some of these kids need. I know you have often said this list is a place where people can post their opinions on anything, but it does seem like you are often at pains to actively dissuade parents from talking about or pursuing these other biomedical options. And on this list, people really do only get " part " of the picture when it comes to biomed. Of course an opinion is always just an opinion and perhaps you feel as if you are simply posting yours. But since you are moderator and an author as well, sometimes your " opinions " hold greater sway than other people's - even when the topic at hand isnt something you are necessarily more knowledgeable about than any other parent. So here's what I cant help but wonder: Since this IS such a great place for the discussion of traditional therapies, maybe it would be a good idea to just LIMIT the discussion to those therapies and prohibit discussion of biomed altogether. There are precedents for such things. For example, when it comes to " chelation " there is a disagreement between the folks who run the " Chelatingkids2 " list and the folks who run the " Autism_Mercury " list. One of the " list rules " on " chelatingkids 2 " is that - because it had become so controversial in that group - you cant even DISCUSS how the main proponent of the other method does it. Many folks just join both lists and get the " full picture " that way, and there are no conflicts!! Anyway, I just wanted to duck in with an opinion...and b/c of the " baby any day " I probably wont be back through for awhile. I hope everyone is doing well. Sophie turned 3 a couple of weeks ago and we are simply astounded by her progress. She is speaking at age level now, sounding out 3 and 4 letter words and reading them, and has the pen control to draw letters like " H " , as well as climbing ladders skillfully at the playground and running as fast as the other kids now as well - this from a kid who has only been speaking for 7 months and had a number of gross motor delays as well. She is still a crummy eater w/many oral sensitivities and we are working on that and we are not " finished " by any means. We also now have a battery of tests from reputable labs and a reputable doctor to back up the biomedical approach we are/had been using. And to be quite honest, every gain we have witnessed has been through biomed. All the best, Josie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2005 Report Share Posted May 6, 2005 Hey " talltex " , You can join them at these two webpages: chelatingkids2/?yguid=66001279 /?yguid=66001279 For chelatingkids2, you have to be taking your kid to a DAN! doctor or be using the DAN! protocol. Both are fantastic resources, are about MUCH more than " chelating " and are VERY high volume, so I suggest that you put them on " web only " or you will be totally inundated with emails! For example in the last 7 days, there have been 549 posts on Autism_Mercury and 1241 posts on chelatingkids2. Really great communities, though. Good luck and kisses to your little one. Best, Theresa Mother of Lulu, 28 months: oral/speech/motor apraxia, deceleration of head growth, periventricular demyelination, as yet undiagnosed. Amsterdam, Netherlands > I would like to know how to join the Chelatingkids2 list and Austism_ Mercury list support groups Thanks for the info!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 At the seminar I just attended in Orlando, Wellness Pharmacy was one of the exhibitors-- they have compounded preservative-free injectable B-12 in prefilled syringes in the exact form and dosage that your doctor recommends. One of the practitioners also recommended using the Emla anesthetic cream, and the doctor who spoke said he tells his parents to administer in the buttocks only, and at a 30 degree angle, so it goes subcutaneous (into the fat), not into the muscle or vein, and it is very inexpensive (less than $2/shot or $25/month). The methylcobalamin form is safest and most effective since there is one very rare metabolic disorder for which the cyanocobalamin can be dangerous, it should be compounded. Wellness can compound the individual prefilled syringes for the exact dosages your doctor may prescribe. They also have nasal spray and sublingual dros at Wellness and at New Beginnings they have sublingual drops. Wellness is at www. wellnesshealth.com. Oh--they also come at different strengths/ml so there might not need to be so much fluid in each shot. 800-227-2627. , I tried to check the abstracts you cited but the links wouldn't work, even when I tried taking out the double slashes that showed up in the middle of the word " abstract. " The night before I took my daughter to the doctor's visit last week (the disastrous one) I called my daughter the internal med vet to ask her what tests we should request. She had just read an article in the paper the night before about urinary methyl malonic acid testing and the prevalence of B12 deficiency, and the terrible effects of these deficiencies when they go undiagnosed. She didn't know I'd been hearing about the same thing at the seminar--I called to ask her about celiac, or diabetes, or food allergies. I got the book that was mentioned in the article: Could it Be B-12? Everybody should read it, it is excellent. Would still like to see the abstracts, . Can you help? Oh, I just remember one more thing. I'm old enough to remember before they started to put folate supplementation into breakfast cereals, etc. One of the arguments against doing that was that it would mask B-12 deficiencies by preventing the macrocytic anemia that would otherwise result. Then, 25 years later, everybody forgot about that possibility. Peace, Kathy E. > In a message dated 4/30/2005 5:19:25 PM Pacific Standard Time, > michelle101291@... writes: > > > Quote Link to comment Share on other sites More sharing options...
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