Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Wow! I thought maybe I cancled this sight out. Hope everyone is okay. I haven't gotten a post in a long time and thought maybe I said something wrong and everybody muted me or something! :-) Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 we must all be sleeping. Or.....none of our kids are! j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 Dear Berky - You might also look up the site for Tough Love International. It was recommnded to me by our local crisis center. The web address is: www.toughlove.org I was favorably impressed by their site. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 HI Berky: Often our beloved OCDers can take a vacation when on vacation. Also being around others they can often keep it together more than when at home with the family. Sorry about all the acronyms, but I am such a poor keyboarder I need all the short cuts I can take. NBD - neurobiological disorder, a fledgling PC term for mental illness, NT - neurobiologically typical, a synonym for " normal " which is just a setting on the dryer! Good luck with your 19 year-old. I have an NT almost 17 year old and sometimes he is way more challenging than his brother with OCD and other alphabet soup. As my hubby reminds me the older one is not on an SSRI so that could be helping a lot. Now I know how lucky my parents were that I left home at 16. Keep posting, and good for you handling the interactions with m.h. professionals so well. It can be intimidating when it feels like it is open season on our parenting and our families are struggling with untreated OCD. Take care, aloha, Kathy (h) kathyh@... At 10:05 PM 03/05/2001 -0800, you wrote: >Like many others, I have been taking in all the wonderful information >that others are posting. I also have been reading (very slowly) and >ordered Dr. Chansky's book on-line as a result of the book ordering >dialogue that Teela and others were involved in. (The book was on sale >and I could probably have driven 10 minutes down the road and bought it, >but it was pretty exciting to order on-line and find it in my >super-mailbox within two days.) >My daughter is 13 with OCD and she is now up to 40 mg of celexa. >Her mood is so much brighter and her OCD, well. . . this is a little >better, but there is lots of work ahead. One big problem is that she >mostly refuses to talk about OCD--big time denial or just not wanting to >do the work of battling it. >The whole thing is going in baby steps, but at least it is going in the >right direction. I feel much more informed and our last meeting with >psychiatrist had me feeling much more in control. has been >invited on a two week vacation with her best friend and her family. I >was terribly ambivalent about letting her go, as I worry about her >missing almost two weeks of school, although is at the top of her >class and her teacher does not think it would be a problem, and also I >worry about OCD interfering with the other family. Mostly 's >routines are non-existent away from home, but what if OCD has her in the >sole bathroom for an hour and other people need to go?? I was quite >surprised when the psychiatrist thought that it would be a wonderful >idea for to go away--it would give a break from her OCD and >certainly her family a break from her and her OCD. >There have been a lot of posts about younger kids with OCD and responses >of how fortunate they are to have an early diagnosis. We had taken > several times previous to current round of appointments and were >more or less dismissed. This week, I spoke to someone from Canadian >Mental Health or some association connected to them and he more or less >verbalized what I suspected. . . that one has to be truly desperate to >get appropriate treatment here. And I was trying to demonstrate how >well we were handling everything so as not to come across as a mother >with poor parenting skills. The old supply and demand equation and the >squeaky wheel gets the grease. How I wish we had been more persistent >when was 9 or 10, but I was so happy to be told did not need >follow up at that very first appointment. >Another reason I do more lurking than posting is that I have two other >kids, also teens, and my 19 year old son is regularly testing the rules >and causing me endless hours of lost sleep. I found a site called > " parenting hurts " and I am planning to lurk there awhile too. BTW (I >know that means " by the way " ), what does NBD or NT mean? I am thinking > " normal behavior disorders " (which are what? ? ?) and " normal >temperament " . . . ? >Berky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 Thanks, Jackie, I will look it up. Berky jackie48hr@... wrote: > Dear Berky - > You might also look up the site for Tough Love International. It was > recommnded to me by our local crisis center. The web address is: > > www.toughlove.org > > I was favorably impressed by their site. > > Jackie > > You may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD-subscribe . You may subscribe to the OCD and Homeschooling List at ocdandhomeschooling-subscribe . You may change your subscription format or access the files, bookmarks, and archives for our list at . Our list advisors are Tamar Chansky, Ph.D., Aureen Pinto Wagner, Ph.D., and Dan Geller, M.D. Our list moderators are Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy , and Jackie Stout. Subscription issues or suggestions may be addressed to Louis Harkins, list owner, at lharkins@... . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 You can buy DSMO at any health food store. It itches when applied straight to the skin. There are some formulas that use a cream to lessen that problem. It's safe for humans to use. >From: " K. B. M. " <turboblue@...> >Reply-longevity >antiagingresearch , longevity >Subject: (No Subject) >Date: Mon, 02 Jul 2001 12:36:05 -0400 > >I was told that epidermal applied supplements are absorbed better > with dmso, in this particular case used with saw palmetto, fo ti, zinc, >and > niacin for what this experimental person acclaims miraculous hair > growth. Dmso also stands alone as a free radical scavenger. > > > Is dmso really safe to place on your skin? I see it is used for > horses as an absorbtion helper for medicines. Can it be purchased > safely as a reagent grade for human consumption and where? > >Could I go to a local country feed store and use the DMSO used for >livestock >on myself? > > > > > Mucho thanks, > > > >Get 250 color business cards for FREE! >http://businesscards.lycos.com/vp/fastpath/ _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 I was told here in Virginia that it can only be purchased via a pharmacy? Porter wrote: > You can buy DSMO at any health food store. It itches when applied straight > to the skin. There are some formulas that use a cream to lessen that > problem. It's safe for humans to use. > > >From: " K. B. M. " <turboblue@...> > >Reply-longevity > >antiagingresearch , longevity > >Subject: (No Subject) > >Date: Mon, 02 Jul 2001 12:36:05 -0400 > > > >I was told that epidermal applied supplements are absorbed better > > with dmso, in this particular case used with saw palmetto, fo ti, zinc, > >and > > niacin for what this experimental person acclaims miraculous hair > > growth. Dmso also stands alone as a free radical scavenger. > > > > > > Is dmso really safe to place on your skin? I see it is used for > > horses as an absorbtion helper for medicines. Can it be purchased > > safely as a reagent grade for human consumption and where? > > > >Could I go to a local country feed store and use the DMSO used for > >livestock > >on myself? > > > > > > > > > > Mucho thanks, > > > > > > > >Get 250 color business cards for FREE! > >http://businesscards.lycos.com/vp/fastpath/ > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 Methylcobalamin is the neurologically active form of vitamin B12. Vitamin B12 comes in several kinds including hydroxy-, cyano-, and adenosyl-, but only the methyl form is used in the central nervous system. The liver does not convert cyanocobalamin into adequate amounts of methylcobalamin. Animal studies have shown that high doses of methylcobalalmin are effective in neuron regeneration and that there is no known toxicity at these high doses. Thanks for Dr. 's site. I just may have to request it from him! Patty (no subject) > Hi Patty: > In case Dr does not reply to your post you might want to contact him > yourself. Here is his website. > http://www.cancer-alternatives.com/ > What is the difference between cayano and methylcobalamin.? > Christel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 My 16 y/o (soon to be 17) also used to think he " smelled bad " . No amount of reassurance made him believe otherwise. But it did go away after a while. For a year I could not get to leave the house except to go to school. He quit going to the show, bowling, tennis, all the things he enjoyed before (it was " dirty " outside). After 10 months on meds, he is able to go out now and is gradually improving.It is hard to help our older children with OCD because of their age. Meds have really helped alot (Luvox 400mg). Is on any meds? Does he also have contamination obsessions? is a hand washer and disinfecter. My thoughts and prayers are with you. I know how very difficult and emotional this is for you. Sharon >From: jddnjreed@... >Reply- >< > >Subject: (no subject) >Date: Tue, 04 Dec 2001 10:32:04 EST > >Today is our son 's 18th birthday. He has been involved with a major >struggle with OCD for 22 months. If tears would have made him better, he >would be well by now. Our whole family has been changed by this illness. > >Our family is moving to a new town because my husband has a new job. >has gone with his dad to the new town already. They are living in an >apartment on the edge of the college where Jim works. Our son thinks he >smells bad and everyone knows it. HE DOES NOT SMELL BAD!!! is more >afraid of young people than anything, so this is a major exposure....he >thought anywhere but where we live would be better because people in our >mid-sized town all " know " about him. Well, he is not leaving the apartment >without being forced. We told him that the only way things would be better >is if he does some really hard work on exposures. If he would only choose >to push himself.....the doctors have all agreed that he has to take some >responsibility. > >I love him so much...but all I can do is get him appropriate medical care, >provide therapists and support. We really don't want to enable him to >wallow in this illness. > >No one really knows the frustration of logic not having any power in a >person until they have lived with it. > >Thanks for listening. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 ....... Thought I would send on this piece of humour sent to me by an American friend to all those in SENATE who might appreciate it (and you know who you are!) Of course it does not include me! June I've seen two shows lately that went on and on about how mid-life is a great time for women. Just last week Oprah had a whole show on how great menopause will be.... Puhleeeeeeeze! I've had a few thoughts of my own and would like to share them with you. Whether you are pushing 40, 50, 60 (or maybe even just pushing your luck) you'll probably relate. Mid-life is when the growth of hair on our legs slows down. This gives us plenty of time to care for our newly acquired mustache. In mid-life women no longer have upper arms, we have wingspans. We are no longer women in sleeveless shirts, we are flying squirrels in drag. Mid-life is when you can stand naked in front of a mirror and you can see your rear without turning around. Mid-life is when you go for a mammogram and you realize that this is the only time someone will ask you to appear topless. Mid-life is when you want to grab every firm young lovely in a tube top and scream, "Listen honey, even the Roman empire fell and those will too." Mid-life brings wisdom to know that life throws us curves and we're sitting on our biggest ones. Mid-life is when you look at your-know-it-all, beeper-wearing teenager and think: "For this I have stretch marks?" In mid-life your memory starts to go. In fact the only thing we can retain is water. Mid-life means that your Body By Jake now includes Legs By Rand McNally -- more red and blue lines than an accurately scaled map of Wisconsin. Mid-life means that you become more reflective... You start pondering the "big" questions. What is life? Why am I here? How much Healthy Choice ice cream can I eat before it's no longer a healthy choice? But mid-life also brings with it an appreciation for what is important. We realize that breasts sag, hips expand and chins double, but our loved ones make the journey worthwhile. Would any of you trade the knowledge that you have now for the body you had way back when? Maybe our bodies simply have to expand to hold all the wisdom and love we've acquired. That's my philosophy and I'm sticking to it! REMEMBER: "Stressed" spelled backward is "desserts." Send this to four women and you will lose two pounds. Send this to all the women you know (or ever knew), and you will lose 10 pounds. If you delete this message, you will gain 10 pounds immediately. (That's why I had to pass this on-I didn't want to risk it! I know We are WOMEN but I think you will enjoy this and since the last sentence is important to me I didn't want to miss out This is for GIRLS ONLY!!! No one else will understand...... I've seen two shows lately that went on and on about how mid-life is a great time for women. Just last week Oprah had a whole show on how great menopause will be.... Puhleeeeeeeze! I've had a few thoughts of my own and would like to share them with you. Whether you are pushing 40, 50, 60 (or maybe even just pushing your luck) you'll probably relate. Mid-life is when the growth of hair on our legs slows down. This gives us plenty of time to care for our newly acquired mustache. In mid-life women no longer have upper arms, we have wingspans. We are no longer women in sleeveless shirts, we are flying squirrels in drag. Mid-life is when you can stand naked in front of a mirror and you can see your rear without turning around. Mid-life is when you go for a mammogram and you realize that this is the only time someone will ask you to appear topless. Mid-life is when you want to grab every firm young lovely in a tube top and scream, "Listen honey, even the Roman empire fell and those will too." Mid-life brings wisdom to know that life throws us curves and we're sitting on our biggest ones. Mid-life is when you look at your-know-it-all, beeper-wearing teenager and think: "For this I have stretch marks?" In mid-life your memory starts to go. In fact the only thing we can retain is water. Mid-life means that your Body By Jake now includes Legs By Rand McNally -- more red and blue lines than an accurately scaled map of Wisconsin. Mid-life means that you become more reflective... You start pondering the "big" questions. What is life? Why am I here? How much Healthy Choice ice cream can I eat before it's no longer a healthy choice? But mid-life also brings with it an appreciation for what is important. We realize that breasts sag, hips expand and chins double, but our loved ones make the journey worthwhile. Would any of you trade the knowledge that you have now for the body you had way back when? Maybe our bodies simply have to expand to hold all the wisdom and love we've acquired. That's my philosophy and I'm sticking to it! REMEMBER: "Stressed" spelled backward is "desserts." Send this to four women and you will lose two pounds. Send this to all the women you know (or ever knew), and you will lose 10 pounds. If you delete this message, you will gain 10 pounds immediately. (That's why I had to pass this on-I didn't want to risk it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 June, I love it! junet579@... wrote: ....... Thought I would send on this piece of humour sent to me by an American friend to all those in SENATE who might appreciate it (and you know who you are!) Of course it does not include me! June I've seen two shows lately that went on and on about how mid-life is a great time for women. Just last week Oprah had a whole show on how great menopause will be.... Puhleeeeeeeze! I've had a few thoughts of my own and would like to share them with you. Whether you are pushing 40, 50, 60 (or maybe even just pushing your luck) you'll probably relate. Mid-life is when the growth of hair on our legs slows down. This gives us plenty of time to care for our newly acquired mustache. In mid-life women no longer have upper arms, we have wingspans. We are no longer women in sleeveless shirts, we are flying squirrels in drag. Mid-life is when you can stand naked in front of a mirror and you can see your rear without turning around. Mid-life is when you go for a mammogram and you realize that this is the only time someone will ask you to appear topless. Mid-life is when you want to grab every firm young lovely in a tube top and scream, "Listen honey, even the Roman empire fell and those will too." Mid-life brings wisdom to know that life throws us curves and we're sitting on our biggest ones. Mid-life is when you look at your-know-it-all, beeper-wearing teenager and think: "For this I have stretch marks?" In mid-life your memory starts to go. In fact the only thing we can retain is water. Mid-life means that your Body By Jake now includes Legs By Rand McNally -- more red and blue lines than an accurately scaled map of Wisconsin. Mid-life means that you become more reflective... You start pondering the "big" questions. What is life? Why am I here? How much Healthy Choice ice cream can I eat before it's no longer a healthy choice? But mid-life also brings with it an appreciation for what is important. We realize that breasts sag, hips expand and chins double, but our loved ones make the journey worthwhile. Would any of you trade the knowledge that you have now for the body you had way back when? Maybe our bodies simply have to expand to hold all the wisdom and love we've acquired. That's my philosophy and I'm sticking to it! REMEMBER: "Stressed" spelled backward is "desserts." Send this to four women and you will lose two pounds. Send this to all the women you know (or ever knew), and you will lose 10 pounds. If you delete this message, you will gain 10 pounds immediately. (That's why I had to pass this on-I didn't want to risk it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2002 Report Share Posted September 23, 2002 God, I hope Vicki doesn't experience anything like that! In a message dated 9/23/02 6:35:29 PM Central Daylight Time, mabriggs@... writes: > . Other people go thrown around so much > that they had broken bones! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2002 Report Share Posted September 23, 2002 All I remember is her saying she was leaving Saturday from Galveston to Cozumel. Wonder how many cruises set sail from there in a day? I figured they'd have to do a detour, but thought they'd still be able to get there. Much better to be safe than sorry! I know a couple that were on their honeymoon when I storm came up. They got sick, but that was the worst of it. Other people go thrown around so much that they had broken bones! Later, Mike Briggs Photo Gallery: http://www.pbase.com/photogrif/ " Fish Gotta Swim, I Gotta Dive " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 What type of classroom/school does your son attend. They sound kinda lazy. Theyre supposed to address behaviors that they write in a report. Thea > I'm concerned about a planning meeting I just had to determine if a > Functional Behavior Assessment is necessary for 5 yr. old > (classified " other " w/ADHD, PDD). The CST already hinted at where they > stand by saying that if he required one, he'd have gotten one initially. > I understand, though, that if the IEP and evals. mention behavioral > issues, they need to be addressed thru an FBA. > It was initially introduced by advocates for me - that pointed out my > son needs an FBA to the CST. I agree, but I don't know alot about how to > FIGHT for one. I just came from the meeting w/the CST (alone) for > 's FBA. The Sp.Ed.Dir. kept asking for examples of why he needed > one, and shot each EXAMPLE down. I will not be getting one. I could use > some suggestions as to how to make the point that this is something > needs. I quoted the law, I stated points to back me up, gave > reasoning that their evals. mention behaviors that aren't addressed, the > teacher had answers for what she does " with all her 5 years olds when > they do those behaviors " . is CLASSIFIED, HOWEVER. I made the > case that we hope to have go into 1st grade w/out an aide (to > redirect him, etc.) and therefore we need more than just an aide > redirecting him now. We need an FBA IN PLACE before there IS a real need > for a program due to a disciplinary action, etc. They kept asking for > dramatic examples, for " red flag " situations.. I said it does not have > to be dramatic. They still didn't see a FBA as " necessary " . They > mentioned that this is a very time consuming, long process. I said > " yeah? so? " True it is not big, red flag behaviors, but these behaviors > do require an aide. I have a list of over 20 behaviors, they didn't care. > Now what? If I write a request, what happens? Will it make any difference? > > mom of twins w/autism Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 -Isnt there a sped teacher involved. It sounds like the regular ed doesnt want to bother, because, he is mainstreamed already. If there was a sped involved woudlnt they be the ones to do the assessment? Thea -- In autism@y..., Pabst <julie@n...> wrote: > Reg. kindergarten w/23 kids and an aide, two sessions a day which makes > it a full day, w/ pull out speech and ot. > Yes, " Lazy " is a good name for these " professionals " . " Sneaky " , " Crappy " > and " Shameless " make up the rest of the team. > > theaghoss wrote: > > >What type of classroom/school does your son attend. They sound kinda > >lazy. Theyre supposed to address behaviors that they write in a > >report. > > > >Thea > > > > > > > > > > > > > > > >>I'm concerned about a planning meeting I just had to determine if > >> > >a > > > >>Functional Behavior Assessment is necessary for 5 yr. old > >>(classified " other " w/ADHD, PDD). The CST already hinted at where > >> > >they > > > >>stand by saying that if he required one, he'd have gotten one > >> > >initially. > > > >>I understand, though, that if the IEP and evals. mention > >> > >behavioral > > > >>issues, they need to be addressed thru an FBA. > >>It was initially introduced by advocates for me - that pointed out > >> > >my > > > >>son needs an FBA to the CST. I agree, but I don't know alot about > >> > >how to > > > >>FIGHT for one. I just came from the meeting w/the CST (alone) for > >>'s FBA. The Sp.Ed.Dir. kept asking for examples of why he > >> > >needed > > > >>one, and shot each EXAMPLE down. I will not be getting one. I > >> > >could use > > > >>some suggestions as to how to make the point that this is > >> > >something > > > >> needs. I quoted the law, I stated points to back me up, > >> > >gave > > > >>reasoning that their evals. mention behaviors that aren't > >> > >addressed, the > > > >>teacher had answers for what she does " with all her 5 years olds > >> > >when > > > >>they do those behaviors " . is CLASSIFIED, HOWEVER. I made > >> > >the > > > >>case that we hope to have go into 1st grade w/out an aide > >> > >(to > > > >>redirect him, etc.) and therefore we need more than just an aide > >>redirecting him now. We need an FBA IN PLACE before there IS a > >> > >real need > > > >>for a program due to a disciplinary action, etc. They kept asking > >> > >for > > > >>dramatic examples, for " red flag " situations.. I said it does not > >> > >have > > > >>to be dramatic. They still didn't see a FBA as " necessary " . They > >>mentioned that this is a very time consuming, long process. I said > >> " yeah? so? " True it is not big, red flag behaviors, but these > >> > >behaviors > > > >>do require an aide. I have a list of over 20 behaviors, they > >> > >didn't care. > > > >>Now what? If I write a request, what happens? Will it make any > >> > >difference? > > > >> > >>mom of twins w/autism > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2002 Report Share Posted November 20, 2002 Call Dr. Bach in Newark, NJ. He's a respiratory rehab specialist, and will be most beneficial to your daughter at this point since respiratory complications will be your biggest concern. Also, he's the one who can instruct you and get you started on Tolerex (amino acid diet) that seems to help type I's. can probably tell you about her experiences with her daughter Taleah. Bach's number is 973-972-4393. His email address is Bachjr@.... Call him right away as I think the sooner you get her started on his protocols, the better off Angeleena will be. Jay (no subject) Well To tel alittle about my wife and I. We are both 26 years old we have 4 serviving children Chrisopher 10, 8, Joesoph 4, Angeleena 3 months (SMA type 1). Angeleena was diagnosed about two weeks ago after we where in and out of the hospital for low heart rate on her apnea monitor. She was on a apnea monitor due to us losing our son Caleb at 3 months two years ago to SIDS (that is what the doctors classed it as then now they think that he passed away from the same disease). We have not noticed any real complications other than the one incident of a low heart rate while she was sleeping and that she does not move her legs hardly at all she is now been for the last two weeks moving her arms and hands real well and sucking on her hands. I Seen in one of the emails a comment that there is something that helps SMA type 1 build there strenght up. Does anyone now of this and could let me know? How do we go about finding out more on this Amino acid diet? Ive seen the name Dr Bach quit a bit do we have to get an appointment to see him in New Jersey? That is all the questions i can think of now without writing a Novel. So please anything you can give me in advice places to look at anything want ot now more about my family please feel free and just ask. Once again Thank You The Richmonds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2002 Report Share Posted November 20, 2002 I am so sorry about the loss of your little Caleb and about Angeleena's diagnosis. I have a three children Ethan 8, almost 5 and Taleah 2 years and 4 months. Taleah has SMA type 1 just like Angeleena. She was diagnosed with SMA 1 when she was 3 months old. We follow Dr. Bach's protocols for respiratory care and she is on the Amino Acid diet. We did fly out to see Dr. Bach and have her g-tube placed. I know of parents who are able to get enough information and cooperation from their local doctors that they have never seen Bach face to face, but I will tell you, we couldn't have done it without that one on one help. Now the hospital here in Utah is right on board with the same protocols that Bach uses. When Taleah was newly diagnosed I started reading every story I could and realized that all of the children who were over the age of three were following Bach's protocols and on the amino acid diet. We decided to try it and we have never regretted it. While Taleah is very weak, with some creativity there are so many great things she can do. She plays computer games, she colors with the help of an arm sling, she talks, she knows her letters, and she is an amazingly happy kid. Taleah uses a bipap at night and naps. This is a machine that gives her an extra " push " of air when she breathes in and backs off when she breathes out. There is a mask that goes over her nose. This way her lungs expand well for all the hours she is asleep. This prevents portions of the lung from getting brittle because of shallow breathing. We do therapies morning and night to clear her lungs. We either do chest percussion therapy where we thump on different portions of her chest and back to loosen any mucus (she loves that part) or we use a machine called the Vest which does the same thing a bit more efficiently. We then use a CoughAssist machine to help her cough anything up. This has a mask that we place over her mouth and nose. It gives a very deep breath in and then changes to a negative pressure and pulls anything out. She doesn't particularly like this machine, but she will ask for it when she's feeling congested and will tolerate it during the twice a day therapies. Another thing we do is avoid oxygen except during emergencies. Actually, I don't think we've had to use oxygen in about 7 months. The cough machine is what we grab when her saturations get low. The idea behind all this is that people with SMA have healthy lungs, just really weak muscles. Dr. Bach says that if the saturations are low that there is one of two problems, either that there is something blocking the airways somewhere or that breathing is shallow and air isn't getting to the lungs. So we use the cough machine to make sure her airways are clear of mucus and the bipap to expand her lungs properly. During the day she's free of all these things. I know I'm writing a novel, but I know how all of this has helped Taleah and it took me forever to find the info. I would rather people get this info. early. As for the Amino Acid Diet I think the best way to explain it is to give you the text from a letter that Bach wrote for Taleah. It sums most of it up. I'll copy and paste it at the end. The only thing I wish I'd done differently is to do all of this earlier, the earlier the better. It's so much easier to get this started before there are problems and prevent illnesses and complications, and it was obvious that after a week on the protocols she felt so much better than she had before we started this. Please feel free to ask me any questions, I'm more than happy to answer anything. Oh, one thing I forgot to say is that there is a study of children with SMA going on in SLC Utah (about 45 minutes from where I live) The study has a few pieces to it, they do some blood testing, they do a dexascan to follow the gain or loss of lean muscle mass and bone density and they do a test called MUNE or Motor Unit Neuron Estimations to test the strength and health of the nerves. This is done with a few electrical impulses to the wrist - Taleah doesn't even find it uncomfortable. They have flights and accommodations donated so it's a great way to get here to see a Neuromuscular specialist that is very knowledgeable in all of these protocols. Dr. Swoboda has also helped the kids get set up on the protocols back in their home towns, helping them get the right equipment and educating their doctors. Very worth it if you ask me. If you want more info. on it let me know and I'll get you the information. English To Whom It May Concern: Taleah English is a 9 month old girl with spinal muscular atrophy type 1. This is a disorder of muscle and of fatty acid metabolism. Within 3 hours of a normal meal, blood amino acid levels of children with SMA decrease to levels that would not be reached until after at least 8 hours of fasting in normal children. In addition, infants with SMA type 1 do not efficiently metabolize fatty acids, a major source of energy during fasting. These children can have high levels of fatty acid byproducts in their urine and blood after overnight fasting. In addition to metabolic aberration associated with immobility, systemic illness, muscle denervation, and muscle atrophy, SMA patients have inborn metabolic abnormalities in mitochondrial fatty acid oxidation and carnitine metabolism. Any process that increases cytoplasmic free fatty acid levels, such as fasting or defects of fatty acid transport or beta-oxidation, would be expected to increase the liver and kidney's production and excretion of dicarboxylic acids. Fasting ketosis reflects normal ketogenesis by utilization of free fatty acids by the livers of SMA patients, but defective beta-oxidation of fatty acids by muscle causes fatty acid metabolites like dicarboxylic acids to spill into the blood. Dicarboxylic acid levels are elevated in the urine of infants with SMA. The extent of dicarboxylic aciduria is a function of SMA severity such that SMA type 1 patients tolerate the briefest fasting without ketosis and dicarboxylic aciduria whereas SMA type 3 patients express these abnormalities only during prolonged fasting, illness and periods of physiologic stress. With relatively minor fasting infantile SMA patients develop dicarboxylic aciduria similarly to patients with primary defects of mitochondrial fatty acid beta-oxidation. (1) Metabolic analyses including the appearance of relatively early ketosis and selective renal loss of carnitine (2) and fatty vacuolization of the liver, suggest that the abnormalities are caused by changes in the cellular physiology related to the molecular defects of the SMA pathogenic Survival Motor Neuron gene or neighboring genes. thus, the defect may be epigenic to the molecular pathogenesis of SMA itself or related to another function of the primary genetic defect. It may also contribute to the development of SMA. (1) Abnormal fatty acid metabolism also appears to resolve with age independent of disease severity. (1) Very often before 10 years of age or during periods of physiologic stress, SMA patients suddenly lose muscle strength at a high rate. (3) Loss of strength is often triggered by respiratory tract infections and other episodes of physiologic stress and undernutrition and tends to become progressive and is most severe in infants. It is very likely that the muscle weakening in SMA infants is due to the inborn errors in fatty acid oxidation rather than to primary SMA denervation and that the weakening can be abated or averted with dietary manipulation. Diets high in carbohydrate, amino acids and polypeptides, and low in fat provide muscle with utilizable energy substrates thereby decreasing dependence on fatty acid oxidation and decreasing excessive accumulation of potentially toxic free fatty acids which can further damage muscle. (2) This diet maintains more normal blood glucose levels during fasting, delays fasting associated ketoacidosis, and has been noted to normalize liver function enzyme levels. Provision of amino acids and short chained peptides instead of complex dairy proteins facilitates glucogenesis and also appears to have a beneficial effect on decreasing airway secretion production for some children. Harpey et al. felt that there was a significant improvement in strength and function for 13 patients treated with modified diets that provide high carbohydrate and elemental amino acids and small chained polypeptides, such as Tolerex and Pediatric Vivonex (Novartis, Minneapolis). (4) Although 90% of SMA type 1 patients have been reported to die by 1 year of age, none of our 30 SMA type 1 patients using this diet have died and the oldest are now 8 years of age. Therefore, I have prescribed Pediatric Vivonex for Taleah. R Bach, MD Professor of Physical Medicine and Rehabilitation Vice Chairman, Department of Physical Medicine and Rehabilitation, Professor of Neurosciences, Department of Neurosciences 1. Crawford TO, Sladky JT, Hurk O, Besner-ston A, Kelley RI. Abnormal fatty acid metabolism in childhood spinal muscular atrophy. Ann Neurol 1999; 45: 337-343 2. Tein I, Sloan AE, Donner EJ, Lehotay DC, Millington DS, Kelley RI. Fatty acid oxidation abnormalities in childhood-onset spinal muscular atrophy: primary or secondary defects? Pediatr Neurol 1995; 12: 21-30 3. Iannaccone ST, Russman BS, Browne RH, Buncher CR, White M, Samaha FJ. Prospective analysis of strength in spinal muscular atrophy. DCN/Spinal Muscular Atrophy Group. J Child Neurol 2000; 15: 97-101 4. Harpey JP, Charpentier C, Paturneau-Jonas M, Renault F Romero N, Fardeau M. Secondary metabolic defects in spinal muscular atrophy type II. Lancet 1990; 336: 629-630 At 09:55 PM 11/19/2002 -0500, you wrote: > Well To tel alittle about my wife and I. We are both 26 years old we >have 4 serviving children Chrisopher 10, 8, Joesoph 4, Angeleena 3 >months (SMA type 1). Angeleena was diagnosed about two weeks ago after we >where in and out of the hospital for low heart rate on her apnea monitor. She >was on a apnea monitor due to us losing our son Caleb at 3 months two years >ago to SIDS (that is what the doctors classed it as then now they think that >he passed away from the same disease). We have not noticed any real >complications other than the one incident of a low heart rate while she was >sleeping and that she does not move her legs hardly at all she is now been >for the last two weeks moving her arms and hands real well and sucking on her >hands. > > I Seen in one of the emails a comment that there is >something that helps SMA type 1 build there strenght up. Does anyone now of >this and could let me know? How do we go about finding out more on this Amino >acid diet? Ive seen the name Dr Bach quit a bit do we have to get an >appointment to see him in New Jersey? That is all the questions i can think >of now without writing a Novel. So please anything you can give me in advice >places to look at anything want ot now more about my family please feel free >and just ask. > > > > Once again Thank You > > > The Richmonds > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2002 Report Share Posted November 20, 2002 , Is that study for type I kids only? If not, can you give me an email address or Dr. Swoboda's number so I can check into it? Jay Re: (no subject) I am so sorry about the loss of your little Caleb and about Angeleena's diagnosis. I have a three children Ethan 8, almost 5 and Taleah 2 years and 4 months. Taleah has SMA type 1 just like Angeleena. She was diagnosed with SMA 1 when she was 3 months old. We follow Dr. Bach's protocols for respiratory care and she is on the Amino Acid diet. We did fly out to see Dr. Bach and have her g-tube placed. I know of parents who are able to get enough information and cooperation from their local doctors that they have never seen Bach face to face, but I will tell you, we couldn't have done it without that one on one help. Now the hospital here in Utah is right on board with the same protocols that Bach uses. When Taleah was newly diagnosed I started reading every story I could and realized that all of the children who were over the age of three were following Bach's protocols and on the amino acid diet. We decided to try it and we have never regretted it. While Taleah is very weak, with some creativity there are so many great things she can do. She plays computer games, she colors with the help of an arm sling, she talks, she knows her letters, and she is an amazingly happy kid. Taleah uses a bipap at night and naps. This is a machine that gives her an extra " push " of air when she breathes in and backs off when she breathes out. There is a mask that goes over her nose. This way her lungs expand well for all the hours she is asleep. This prevents portions of the lung from getting brittle because of shallow breathing. We do therapies morning and night to clear her lungs. We either do chest percussion therapy where we thump on different portions of her chest and back to loosen any mucus (she loves that part) or we use a machine called the Vest which does the same thing a bit more efficiently. We then use a CoughAssist machine to help her cough anything up. This has a mask that we place over her mouth and nose. It gives a very deep breath in and then changes to a negative pressure and pulls anything out. She doesn't particularly like this machine, but she will ask for it when she's feeling congested and will tolerate it during the twice a day therapies. Another thing we do is avoid oxygen except during emergencies. Actually, I don't think we've had to use oxygen in about 7 months. The cough machine is what we grab when her saturations get low. The idea behind all this is that people with SMA have healthy lungs, just really weak muscles. Dr. Bach says that if the saturations are low that there is one of two problems, either that there is something blocking the airways somewhere or that breathing is shallow and air isn't getting to the lungs. So we use the cough machine to make sure her airways are clear of mucus and the bipap to expand her lungs properly. During the day she's free of all these things. I know I'm writing a novel, but I know how all of this has helped Taleah and it took me forever to find the info. I would rather people get this info. early. As for the Amino Acid Diet I think the best way to explain it is to give you the text from a letter that Bach wrote for Taleah. It sums most of it up. I'll copy and paste it at the end. The only thing I wish I'd done differently is to do all of this earlier, the earlier the better. It's so much easier to get this started before there are problems and prevent illnesses and complications, and it was obvious that after a week on the protocols she felt so much better than she had before we started this. Please feel free to ask me any questions, I'm more than happy to answer anything. Oh, one thing I forgot to say is that there is a study of children with SMA going on in SLC Utah (about 45 minutes from where I live) The study has a few pieces to it, they do some blood testing, they do a dexascan to follow the gain or loss of lean muscle mass and bone density and they do a test called MUNE or Motor Unit Neuron Estimations to test the strength and health of the nerves. This is done with a few electrical impulses to the wrist - Taleah doesn't even find it uncomfortable. They have flights and accommodations donated so it's a great way to get here to see a Neuromuscular specialist that is very knowledgeable in all of these protocols. Dr. Swoboda has also helped the kids get set up on the protocols back in their home towns, helping them get the right equipment and educating their doctors. Very worth it if you ask me. If you want more info. on it let me know and I'll get you the information. English To Whom It May Concern: Taleah English is a 9 month old girl with spinal muscular atrophy type 1. This is a disorder of muscle and of fatty acid metabolism. Within 3 hours of a normal meal, blood amino acid levels of children with SMA decrease to levels that would not be reached until after at least 8 hours of fasting in normal children. In addition, infants with SMA type 1 do not efficiently metabolize fatty acids, a major source of energy during fasting. These children can have high levels of fatty acid byproducts in their urine and blood after overnight fasting. In addition to metabolic aberration associated with immobility, systemic illness, muscle denervation, and muscle atrophy, SMA patients have inborn metabolic abnormalities in mitochondrial fatty acid oxidation and carnitine metabolism. Any process that increases cytoplasmic free fatty acid levels, such as fasting or defects of fatty acid transport or beta-oxidation, would be expected to increase the liver and kidney's production and excretion of dicarboxylic acids. Fasting ketosis reflects normal ketogenesis by utilization of free fatty acids by the livers of SMA patients, but defective beta-oxidation of fatty acids by muscle causes fatty acid metabolites like dicarboxylic acids to spill into the blood. Dicarboxylic acid levels are elevated in the urine of infants with SMA. The extent of dicarboxylic aciduria is a function of SMA severity such that SMA type 1 patients tolerate the briefest fasting without ketosis and dicarboxylic aciduria whereas SMA type 3 patients express these abnormalities only during prolonged fasting, illness and periods of physiologic stress. With relatively minor fasting infantile SMA patients develop dicarboxylic aciduria similarly to patients with primary defects of mitochondrial fatty acid beta-oxidation. (1) Metabolic analyses including the appearance of relatively early ketosis and selective renal loss of carnitine (2) and fatty vacuolization of the liver, suggest that the abnormalities are caused by changes in the cellular physiology related to the molecular defects of the SMA pathogenic Survival Motor Neuron gene or neighboring genes. thus, the defect may be epigenic to the molecular pathogenesis of SMA itself or related to another function of the primary genetic defect. It may also contribute to the development of SMA. (1) Abnormal fatty acid metabolism also appears to resolve with age independent of disease severity. (1) Very often before 10 years of age or during periods of physiologic stress, SMA patients suddenly lose muscle strength at a high rate. (3) Loss of strength is often triggered by respiratory tract infections and other episodes of physiologic stress and undernutrition and tends to become progressive and is most severe in infants. It is very likely that the muscle weakening in SMA infants is due to the inborn errors in fatty acid oxidation rather than to primary SMA denervation and that the weakening can be abated or averted with dietary manipulation. Diets high in carbohydrate, amino acids and polypeptides, and low in fat provide muscle with utilizable energy substrates thereby decreasing dependence on fatty acid oxidation and decreasing excessive accumulation of potentially toxic free fatty acids which can further damage muscle. (2) This diet maintains more normal blood glucose levels during fasting, delays fasting associated ketoacidosis, and has been noted to normalize liver function enzyme levels. Provision of amino acids and short chained peptides instead of complex dairy proteins facilitates glucogenesis and also appears to have a beneficial effect on decreasing airway secretion production for some children. Harpey et al. felt that there was a significant improvement in strength and function for 13 patients treated with modified diets that provide high carbohydrate and elemental amino acids and small chained polypeptides, such as Tolerex and Pediatric Vivonex (Novartis, Minneapolis). (4) Although 90% of SMA type 1 patients have been reported to die by 1 year of age, none of our 30 SMA type 1 patients using this diet have died and the oldest are now 8 years of age. Therefore, I have prescribed Pediatric Vivonex for Taleah. R Bach, MD Professor of Physical Medicine and Rehabilitation Vice Chairman, Department of Physical Medicine and Rehabilitation, Professor of Neurosciences, Department of Neurosciences 1. Crawford TO, Sladky JT, Hurk O, Besner-ston A, Kelley RI. Abnormal fatty acid metabolism in childhood spinal muscular atrophy. Ann Neurol 1999; 45: 337-343 2. Tein I, Sloan AE, Donner EJ, Lehotay DC, Millington DS, Kelley RI. Fatty acid oxidation abnormalities in childhood-onset spinal muscular atrophy: primary or secondary defects? Pediatr Neurol 1995; 12: 21-30 3. Iannaccone ST, Russman BS, Browne RH, Buncher CR, White M, Samaha FJ. Prospective analysis of strength in spinal muscular atrophy. DCN/Spinal Muscular Atrophy Group. J Child Neurol 2000; 15: 97-101 4. Harpey JP, Charpentier C, Paturneau-Jonas M, Renault F Romero N, Fardeau M. Secondary metabolic defects in spinal muscular atrophy type II. Lancet 1990; 336: 629-630 At 09:55 PM 11/19/2002 -0500, you wrote: > Well To tel alittle about my wife and I. We are both 26 years old we >have 4 serviving children Chrisopher 10, 8, Joesoph 4, Angeleena 3 >months (SMA type 1). Angeleena was diagnosed about two weeks ago after we >where in and out of the hospital for low heart rate on her apnea monitor. She >was on a apnea monitor due to us losing our son Caleb at 3 months two years >ago to SIDS (that is what the doctors classed it as then now they think that >he passed away from the same disease). We have not noticed any real >complications other than the one incident of a low heart rate while she was >sleeping and that she does not move her legs hardly at all she is now been >for the last two weeks moving her arms and hands real well and sucking on her >hands. > > I Seen in one of the emails a comment that there is >something that helps SMA type 1 build there strenght up. Does anyone now of >this and could let me know? How do we go about finding out more on this Amino >acid diet? Ive seen the name Dr Bach quit a bit do we have to get an >appointment to see him in New Jersey? That is all the questions i can think >of now without writing a Novel. So please anything you can give me in advice >places to look at anything want ot now more about my family please feel free >and just ask. > > > > Once again Thank You > > > The Richmonds > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2002 Report Share Posted November 20, 2002 No type discrimination in the study ;-) But I know there are some other requirements they have to meet to be in the study, you'll have to ask them. Adam Craner NP is the person to talk to about the study. His phone number is 801-588-3385. I can dig out his e-mail addy if you really want it, but he is really bad about returning e-mails. Sometimes it takes him several weeks so I've just told people to call. It would be really fun to have you come out, we'd definitely make a point of coming to Salt Lake to see you. Taleah will come too if it's not during winter. At 02:15 PM 11/20/2002 -0500, you wrote: >, > >Is that study for type I kids only? If not, can you give me an email >address or Dr. Swoboda's number so I can check into it? > >Jay > > Re: (no subject) > > >I am so sorry about the loss of your little Caleb and about Angeleena's >diagnosis. > >I have a three children Ethan 8, almost 5 and Taleah 2 years and 4 >months. Taleah has SMA type 1 just like Angeleena. She was diagnosed with >SMA 1 when she was 3 months old. We follow Dr. Bach's protocols for >respiratory care and she is on the Amino Acid diet. We did fly out to see >Dr. Bach and have her g-tube placed. I know of parents who are able to get >enough information and cooperation from their local doctors that they have >never seen Bach face to face, but I will tell you, we couldn't have done it >without that one on one help. Now the hospital here in Utah is right on >board with the same protocols that Bach uses. > >When Taleah was newly diagnosed I started reading every story I could and >realized that all of the children who were over the age of three were >following Bach's protocols and on the amino acid diet. We decided to try >it and we have never regretted it. > >While Taleah is very weak, with some creativity there are so many great >things she can do. She plays computer games, she colors with the help of >an arm sling, she talks, she knows her letters, and she is an amazingly >happy kid. > >Taleah uses a bipap at night and naps. This is a machine that gives her an >extra " push " of air when she breathes in and backs off when she breathes >out. There is a mask that goes over her nose. This way her lungs expand >well for all the hours she is asleep. This prevents portions of the lung >from getting brittle because of shallow breathing. We do therapies morning >and night to clear her lungs. We either do chest percussion therapy where >we thump on different portions of her chest and back to loosen any mucus >(she loves that part) or we use a machine called the Vest which does the >same thing a bit more efficiently. We then use a CoughAssist machine to >help her cough anything up. This has a mask that we place over her mouth >and nose. It gives a very deep breath in and then changes to a negative >pressure and pulls anything out. She doesn't particularly like this >machine, but she will ask for it when she's feeling congested and will >tolerate it during the twice a day therapies. > >Another thing we do is avoid oxygen except during emergencies. Actually, I >don't think we've had to use oxygen in about 7 months. The cough machine >is what we grab when her saturations get low. > >The idea behind all this is that people with SMA have healthy lungs, just >really weak muscles. Dr. Bach says that if the saturations are low that >there is one of two problems, either that there is something blocking the >airways somewhere or that breathing is shallow and air isn't getting to the >lungs. So we use the cough machine to make sure her airways are clear of >mucus and the bipap to expand her lungs properly. During the day she's >free of all these things. > >I know I'm writing a novel, but I know how all of this has helped Taleah >and it took me forever to find the info. I would rather people get this >info. early. > >As for the Amino Acid Diet I think the best way to explain it is to give >you the text from a letter that Bach wrote for Taleah. It sums most of it >up. I'll copy and paste it at the end. > >The only thing I wish I'd done differently is to do all of this earlier, >the earlier the better. It's so much easier to get this started before >there are problems and prevent illnesses and complications, and it was >obvious that after a week on the protocols she felt so much better than she >had before we started this. > >Please feel free to ask me any questions, I'm more than happy to answer >anything. > >Oh, one thing I forgot to say is that there is a study of children with SMA >going on in SLC Utah (about 45 minutes from where I live) The study has a >few pieces to it, they do some blood testing, they do a dexascan to follow >the gain or loss of lean muscle mass and bone density and they do a test >called MUNE or Motor Unit Neuron Estimations to test the strength and >health of the nerves. This is done with a few electrical impulses to the >wrist - Taleah doesn't even find it uncomfortable. They have flights and >accommodations donated so it's a great way to get here to see a >Neuromuscular specialist that is very knowledgeable in all of these >protocols. Dr. Swoboda has also helped the kids get set up on the >protocols back in their home towns, helping them get the right equipment >and educating their doctors. Very worth it if you ask me. If you want >more info. on it let me know and I'll get you the information. > > English > >To Whom It May Concern: > >Taleah English is a 9 month old girl with spinal muscular atrophy type >1. This is a disorder of muscle and of fatty acid metabolism. Within 3 >hours of a normal meal, blood amino acid levels of children with SMA >decrease to levels that would not be reached until after at least 8 hours >of fasting in normal children. In addition, infants with SMA type 1 do not >efficiently metabolize fatty acids, a major source of energy during >fasting. These children can have high levels of fatty acid byproducts in >their urine and blood after overnight fasting. > >In addition to metabolic aberration associated with immobility, systemic >illness, muscle denervation, and muscle atrophy, SMA patients have inborn >metabolic abnormalities in mitochondrial fatty acid oxidation and carnitine >metabolism. Any process that increases cytoplasmic free fatty acid levels, >such as fasting or defects of fatty acid transport or beta-oxidation, would >be expected to increase the liver and kidney's production and excretion of >dicarboxylic acids. Fasting ketosis reflects normal ketogenesis by >utilization of free fatty acids by the livers of SMA patients, but >defective beta-oxidation of fatty acids by muscle causes fatty acid >metabolites like dicarboxylic acids to spill into the blood. Dicarboxylic >acid levels are elevated in the urine of infants with SMA. The extent of >dicarboxylic aciduria is a function of SMA severity such that SMA type 1 >patients tolerate the briefest fasting without ketosis and dicarboxylic >aciduria whereas SMA type 3 patients express these abnormalities only >during prolonged fasting, illness and periods of physiologic stress. > >With relatively minor fasting infantile SMA patients develop dicarboxylic >aciduria similarly to patients with primary defects of mitochondrial fatty >acid beta-oxidation. (1) Metabolic analyses including the appearance of >relatively early ketosis and selective renal loss of carnitine (2) and >fatty vacuolization of the liver, suggest that the abnormalities are caused >by changes in the cellular physiology related to the molecular defects of >the SMA pathogenic Survival Motor Neuron gene or neighboring genes. thus, >the defect may be epigenic to the molecular pathogenesis of SMA itself or >related to another function of the primary genetic defect. It may also >contribute to the development of SMA. (1) Abnormal fatty acid metabolism >also appears to resolve with age independent of disease severity. (1) > >Very often before 10 years of age or during periods of physiologic stress, >SMA patients suddenly lose muscle strength at a high rate. (3) Loss of >strength is often triggered by respiratory tract infections and other >episodes of physiologic stress and undernutrition and tends to become >progressive and is most severe in infants. It is very likely that the >muscle weakening in SMA infants is due to the inborn errors in fatty acid >oxidation rather than to primary SMA denervation and that the weakening can >be abated or averted with dietary manipulation. Diets high in >carbohydrate, amino acids and polypeptides, and low in fat provide muscle >with utilizable energy substrates thereby decreasing dependence on fatty >acid oxidation and decreasing excessive accumulation of potentially toxic >free fatty acids which can further damage muscle. (2) >This diet maintains more normal blood glucose levels during fasting, delays >fasting associated ketoacidosis, and has been noted to normalize liver >function enzyme levels. Provision of amino acids and short chained >peptides instead of complex dairy proteins facilitates glucogenesis and >also appears to have a beneficial effect on decreasing airway secretion >production for some children. > >Harpey et al. felt that there was a significant improvement in strength and >function for 13 patients treated with modified diets that provide high >carbohydrate and elemental amino acids and small chained polypeptides, such >as Tolerex and Pediatric Vivonex (Novartis, Minneapolis). (4) Although 90% >of SMA type 1 patients have been reported to die by 1 year of age, none of >our 30 SMA type 1 patients using this diet have died and the oldest are now >8 years of age. Therefore, I have prescribed Pediatric Vivonex for Taleah. > > R Bach, MD >Professor of Physical Medicine and Rehabilitation >Vice Chairman, Department of Physical Medicine and Rehabilitation, >Professor of Neurosciences, Department of Neurosciences > >1. Crawford TO, Sladky JT, Hurk O, Besner-ston A, Kelley RI. Abnormal >fatty acid metabolism in childhood spinal muscular atrophy. Ann Neurol >1999; 45: 337-343 >2. Tein I, Sloan AE, Donner EJ, Lehotay DC, Millington DS, Kelley >RI. Fatty acid oxidation abnormalities in childhood-onset spinal muscular >atrophy: primary or secondary defects? Pediatr Neurol 1995; 12: 21-30 >3. Iannaccone ST, Russman BS, Browne RH, Buncher CR, White M, Samaha >FJ. Prospective analysis of strength in spinal muscular >atrophy. DCN/Spinal Muscular Atrophy Group. J Child Neurol 2000; 15: >97-101 >4. Harpey JP, Charpentier C, Paturneau-Jonas M, Renault F Romero N, >Fardeau M. Secondary metabolic defects in spinal muscular atrophy type >II. Lancet 1990; 336: 629-630 > > > > >At 09:55 PM 11/19/2002 -0500, you wrote: > > Well To tel alittle about my wife and I. We are both 26 years old >we > >have 4 serviving children Chrisopher 10, 8, Joesoph 4, Angeleena 3 > >months (SMA type 1). Angeleena was diagnosed about two weeks ago after we > >where in and out of the hospital for low heart rate on her apnea monitor. >She > >was on a apnea monitor due to us losing our son Caleb at 3 months two years > >ago to SIDS (that is what the doctors classed it as then now they think >that > >he passed away from the same disease). We have not noticed any real > >complications other than the one incident of a low heart rate while she was > >sleeping and that she does not move her legs hardly at all she is now been > >for the last two weeks moving her arms and hands real well and sucking on >her > >hands. > > > > I Seen in one of the emails a comment that there is > >something that helps SMA type 1 build there strenght up. Does anyone now of > >this and could let me know? How do we go about finding out more on this >Amino > >acid diet? Ive seen the name Dr Bach quit a bit do we have to get an > >appointment to see him in New Jersey? That is all the questions i can think > >of now without writing a Novel. So please anything you can give me in >advice > >places to look at anything want ot now more about my family please feel >free > >and just ask. > > > > > > > > Once again Thank You > > > > > > The Richmonds > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Reg. kindergarten w/23 kids and an aide, two sessions a day which makes it a full day, w/ pull out speech and ot. Yes, " Lazy " is a good name for these " professionals " . " Sneaky " , " Crappy " and " Shameless " make up the rest of the team. theaghoss wrote: >What type of classroom/school does your son attend. They sound kinda >lazy. Theyre supposed to address behaviors that they write in a >report. > >Thea > > > > > > > >>I'm concerned about a planning meeting I just had to determine if >> >a > >>Functional Behavior Assessment is necessary for 5 yr. old >>(classified " other " w/ADHD, PDD). The CST already hinted at where >> >they > >>stand by saying that if he required one, he'd have gotten one >> >initially. > >>I understand, though, that if the IEP and evals. mention >> >behavioral > >>issues, they need to be addressed thru an FBA. >>It was initially introduced by advocates for me - that pointed out >> >my > >>son needs an FBA to the CST. I agree, but I don't know alot about >> >how to > >>FIGHT for one. I just came from the meeting w/the CST (alone) for >>'s FBA. The Sp.Ed.Dir. kept asking for examples of why he >> >needed > >>one, and shot each EXAMPLE down. I will not be getting one. I >> >could use > >>some suggestions as to how to make the point that this is >> >something > >> needs. I quoted the law, I stated points to back me up, >> >gave > >>reasoning that their evals. mention behaviors that aren't >> >addressed, the > >>teacher had answers for what she does " with all her 5 years olds >> >when > >>they do those behaviors " . is CLASSIFIED, HOWEVER. I made >> >the > >>case that we hope to have go into 1st grade w/out an aide >> >(to > >>redirect him, etc.) and therefore we need more than just an aide >>redirecting him now. We need an FBA IN PLACE before there IS a >> >real need > >>for a program due to a disciplinary action, etc. They kept asking >> >for > >>dramatic examples, for " red flag " situations.. I said it does not >> >have > >>to be dramatic. They still didn't see a FBA as " necessary " . They >>mentioned that this is a very time consuming, long process. I said >> " yeah? so? " True it is not big, red flag behaviors, but these >> >behaviors > >>do require an aide. I have a list of over 20 behaviors, they >> >didn't care. > >>Now what? If I write a request, what happens? Will it make any >> >difference? > >> >>mom of twins w/autism >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 In a message dated 1/30/03 1:38:25 PM Alaskan Standard Time, JYoung514@... writes: > Can anyone tell me what phenonip and helichrisum are ?? Also, does anyone > know what hempene and plantain are. I saw them listed as ingredients in a > Phenonip is a preservative (kills cooties) Helichrisum is an essential oil (good for skin) Plantain is a banana as far as I know (tastes good fried) And I don't know what hempene is. :-) Sage Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 The plantain you are talking about could be the weed that grows in my garden. I have read in a lot of book lately about it's healing powers (good for bug bites, ect.) An herb book could give you more info. Lori Re: (no subject) In a message dated 1/30/03 1:38:25 PM Alaskan Standard Time, JYoung514@... writes: > Can anyone tell me what phenonip and helichrisum are ?? Also, does anyone > know what hempene and plantain are. I saw them listed as ingredients in a > Phenonip is a preservative (kills cooties) Helichrisum is an essential oil (good for skin) Plantain is a banana as far as I know (tastes good fried) And I don't know what hempene is. :-) Sage Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 PLANTAIN...found it ! Plantago spp. considered an important healing herb .Used as an astringent to stop both internal and external bleeding. Ribort planytain ( P. lanceolata) used as a treatment for catarrhal conditions. Parts used are the leaves: urinary tract infections, irritations and dry coughs. Externally for sores and wounds. Seeds: laxative for sluggish or ittitable bowel. Leaves= can be drunk as a juice, 10mls 3 times a day for inflammed mucous menbranes in cystitis, diarrhoea and lung infections. Tincture= catarrhal conditions, Poultice= bee stings and slow healing wounds. Ointment= wounds, burns and haemorrhoids. Wash= inflammations, sores and wounds. Gargle= diluted juice for sore throats and mouth and gum inflammations. Syrup= ( from juice) = coughs. Seeds: infusion for constipation.( drink at night, also the seeds) I have this really neat book !.............hugs, . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 That is interesting since a colleague and I have been asked to carry out a health impact assessment on a London school. Preliminary suggestion is that the Head would like more health input from the local PCT and although there is a school nurse she appears to rarely engage in anything other than the medical checks and the school is desperate with large numbers of children on the child protection register, drugs, teenage pregnancies - you name it is there. I think that we will have to think about a partnership project but the school nurse is crucial and t could be such an interesting challenge, but it will take more than a medical model of working to make a difference. In message <1de.62be5b2.2bc1dacd@...>, carol68974@... writes > I have recently taken on being the line manager for school nursing. > I am from > a health visiting background. My problem is that the school nursing > team seem > to work in the medical model and believe that the cmo's are there > directors. > In the light of Hall 4 and the governments thinking on school > nursing i can > see i have a job on my hands for trying to shift the balance. I can > see > clearly the potential and excitment for school nursing to take the > lead in > addressing school health needs and moving away from being screening > driven. I > would appreciate some advice form anyone out there. > > Mnay thanks > Carol > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 Dear and Carol, Is this anything I could help with? It is not too far, from Chelmsford to London.... Woody. Dept. Public and Family Health APU 41 Park Road Chelmsford Essex CM1 1LL. On Sun, 6 Apr 2003 21:26:41 +0100 Rowe <jean@...> wrote: > That is interesting since a colleague and I have been asked to carry out > a health impact assessment on a London school. Preliminary suggestion is > that the Head would like more health input from the local PCT and > although there is a school nurse she appears to rarely engage in > anything other than the medical checks and the school is desperate with > large numbers of children on the child protection register, drugs, > teenage pregnancies - you name it is there. I think that we will have to > think about a partnership project but the school nurse is crucial and t > could be such an interesting challenge, but it will take more than a > medical model of working to make a difference. > > In message <1de.62be5b2.2bc1dacd@...>, carol68974@... writes > > I have recently taken on being the line manager for school nursing. > > I am from > > a health visiting background. My problem is that the school nursing > > team seem > > to work in the medical model and believe that the cmo's are there > > directors. > > In the light of Hall 4 and the governments thinking on school > > nursing i can > > see i have a job on my hands for trying to shift the balance. I can > > see > > clearly the potential and excitment for school nursing to take the > > lead in > > addressing school health needs and moving away from being screening > > driven. I > > would appreciate some advice form anyone out there. > > > > Mnay thanks > > Carol > > > > Quote Link to comment Share on other sites More sharing options...
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