Guest guest Posted May 18, 2010 Report Share Posted May 18, 2010 You will feel so much better once the drugs kick in and you will start feeling like your " old self " . You will even be able to work out and feel good about your body! Hang in there! Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2010 Report Share Posted May 18, 2010 Hi Sue: So sorry to here that you have been diagnosed with PA and at the same time are going through a Divorce, it must be awful for you. I wanted to say that we all have the need to vent and that is what this group is all about, get it out and maybe one of our wonderful members will have some sage advice for you. Also, the National Psoriasis Foundation has a great website and message boards with topics on Psoriasis, PA, complimentary and alternative treatments, support for family members, etc.... check out www.npf.org, you'll be glad you did. In the meantime since you are not working and can't get to a doctor see if taking Aleve, or Motrin gives you some relief and try some over the counter product for your Psoriasis to help with the itch and scaling, something like hydrocortisone cream might help. Good luck to you and welcome to the group. Deanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2010 Report Share Posted May 18, 2010 Thanks, Deanna. The dermatologist got me stuff for my head and lesions and I can only take Tylenol because I'm on Coumadin for the clots. I don't find the Tylenol (arthritis formula) does much for me tho. We'll see what the rheumatologist says for meds on Thursday. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2010 Report Share Posted May 20, 2010 Dear Amy... I am a horse person and I think you are so heartful and courageous to help your horse so..... Where else can you go to look for help if not here - or any Lyme site. Our animals are our loved and cherished family members...... I can't say for sure but all you have done should be weakening the bugs unless there is re-exposure... something that would be almost impossible to know. The high titers are an expression of immune response - not the microbial load.... I guess your clues as to how things are going is your horse's joint pain. There's got to be an equine site for diseases. I have read that horses and dogs are particularly vulnerable to Lyme. Cattle have immune systems that can cope better and their antibodies to Lyme are in raw milk.... that doesn't help you much. I'm wondering if there could be donations from other horse lovers or groups out there..... living where you do I can imagine that you are not alone. My heart and prayers are with you. J [ ] New here Hi All, Just curious if anyone has any experience with lyme in horses. That's my issue right now and there seems to be no group/list specifically for equine lyme. I did do the Buhner herbal treatment with my horse for a year. I have done multiple oral doxy treatments with 10 days pulsing over the last three years. For example - 10 days on 10 days off 30 days on. I also did 28 days of I/V oxytet six months ago. Still a strong positive titer. :-( I am going broke feeding her doxy (she needs 40 twice/day), but it does have some anti-inflammatory effects and during a bad spell it helps her feel better. If this is not at all the place for my questions, feel free to say so. I am at a loss and finding no support group specifically for equine lyme, so I am trying here. Thanks, Amy Cape , Maine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2010 Report Share Posted May 23, 2010 Don't know for sure if this site will help, but it is focused on natural solutions for animal health issues. Try googling or binging silverpets. Maybe someone there can help you to at least find some relevant links. SteveMenlo Park, CA(formerly Bangor, ME) From: Amy Carlson <camy@...> Subject: [ ] New here Date: Thursday, May 20, 2010, 6:03 AM  Hi All, Just curious if anyone has any experience with lyme in horses. That's my issue right now and there seems to be no group/list specifically for equine lyme. I did do the Buhner herbal treatment with my horse for a year. I have done multiple oral doxy treatments with 10 days pulsing over the last three years. For example - 10 days on 10 days off 30 days on. I also did 28 days of I/V oxytet six months ago. Still a strong positive titer. :-( I am going broke feeding her doxy (she needs 40 twice/day), but it does have some anti-inflammatory effects and during a bad spell it helps her feel better. If this is not at all the place for my questions, feel free to say so. I am at a loss and finding no support group specifically for equine lyme, so I am trying here. Thanks, Amy Cape , Maine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2010 Report Share Posted July 6, 2010 Spinal fusion is a rough surgery to go through. Be sure to make sure the doctor knows what he/she is doing. Also look up the results of this kind of surgery. I had it and I know several other people that has had it, and it does not do a lot of good. Like I was told by my doctor, I hurt before surgery and I will hurt afterwards. The pain does not really go away for most of us. > > Hello, I have been lurking for couple months this is my first post. My son was diagnosed at 4years old with Chiari/holocord syringomyelia,scoliosis... He is now 11yrs old has had 2 chiari decompressions and a syringopleural shunt placed over the last several years. He has been braced off and on for years for the scolio..IT recently has progressed to around 50 degree c curve, they are now talking lower spinal fusion to keep it from getting worse as he grows...Has anyone had this done & what are the outcomes , even if it was years ago do you have pain now???? thanks for any help > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2010 Report Share Posted July 7, 2010 I was born with spina bifida, scolosis, etc., I also have chiari and syrinx, but I have NOT undergone surgery to repair the chiari or have the syrinx drained/shunted. Yet I have had other surgeries. I have a friend whose daughter sounds similar to your son. I'm not sure if her surgery was actually a fusion, but I know they placed rods on each side of her spine as a teenager to treat the scolosis to keep it from getting even worse. She was down for several weeks (and after having a lumbar surgery of a different nature I can tell you it is rough), but now she is in her 2nd year of college and living a normal life and I have not heard her complain from the pain of the rods, and you can not tell at all what she went through as a child! Barb > > Hello, I have been lurking for couple months this is my first post. My son was diagnosed at 4years old with Chiari/holocord syringomyelia,scoliosis... He is now 11yrs old has had 2 chiari decompressions and a syringopleural shunt placed over the last several years. He has been braced off and on for years for the scolio..IT recently has progressed to around 50 degree c curve, they are now talking lower spinal fusion to keep it from getting worse as he grows...Has anyone had this done & what are the outcomes , even if it was years ago do you have pain now???? thanks for any help > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2010 Report Share Posted July 7, 2010 that is so true. I made a mistake the first two surgeries by allowing bone doctors surgeons to do the first two, they failed miserably, however, the last two were by spine specialist, i would have been okay if i had gotten a spine specialist to do the first one, but by the time i found one the damage had already been done and he could not fix what the other surgeons had done. I have now over 80% nerve damage. I have to take morphine everyday and my spine is crumbling slowly. be sure to get the right surgeon one who specialized in the spine please. Blessings, L Kaiser Art, Photography and more http://www.kaisercreations.com Healing Solutions http://healingsolutionsbycathyandlaura.vpweb.com/default.html Desert Fire’s Art Community: http://desertfireartcommunity.yuku.com/ Ghost/Paranormal website: http://azdesertfire.tripod.com ________________________________ From: Kittywagon_98 <kittywagon98@...> spinal problems Sent: Tue, July 6, 2010 5:06:40 PM Subject: Re: New here Spinal fusion is a rough surgery to go through. Be sure to make sure the doctor knows what he/she is doing. Also look up the results of this kind of surgery. I had it and I know several other people that has had it, and it does not do a lot of good. Like I was told by my doctor, I hurt before surgery and I will hurt afterwards. The pain does not really go away for most of us. > > Hello, I have been lurking for couple months this is my first post. My son was >diagnosed at 4years old with Chiari/holocord syringomyelia,scoliosis... He is >now 11yrs old has had 2 chiari decompressions and a syringopleural shunt placed >over the last several years. He has been braced off and on for years for the >scolio..IT recently has progressed to around 50 degree c curve, they are now >talking lower spinal fusion to keep it from getting worse as he grows...Has >anyone had this done & what are the outcomes , even if it was years ago do you >have pain now???? thanks for any help > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2010 Report Share Posted July 7, 2010 Yes you have to really research who is doing the work on you. A co-worker of mine abused his body so badly from heavy lifting all his life. He had to go in and get the rods placed onto his spine. Now he is in worse shape than before. I guess they nicked a nerve to his right leg and he has to wear a brace on his right leg because he falls over quite a bit. The brace stops his leg from giving out and him falling over. He actually finds humour in it. I guess that must be what keeps him going like he does Re: New here Spinal fusion is a rough surgery to go through. Be sure to make sure the doctor knows what he/she is doing. Also look up the results of this kind of surgery. I had it and I know several other people that has had it, and it does not do a lot of good. Like I was told by my doctor, I hurt before surgery and I will hurt afterwards. The pain does not really go away for most of us. > > Hello, I have been lurking for couple months this is my first post. My son was >diagnosed at 4years old with Chiari/holocord syringomyelia,scoliosis... He is >now 11yrs old has had 2 chiari decompressions and a syringopleural shunt placed >over the last several years. He has been braced off and on for years for the >scolio..IT recently has progressed to around 50 degree c curve, they are now >talking lower spinal fusion to keep it from getting worse as he grows...Has >anyone had this done & what are the outcomes , even if it was years ago do you >have pain now???? thanks for any help > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2010 Report Share Posted July 7, 2010 yes that is what happened he cut my sciatica nerve and it is permanently damaged. the physical therapist says there is so much scar tissue he cannot get to it, that nerve is now shrunk. the last time i saw my back x-rays, you cannot see the spine all you see is a white mass like a white tornado storm all the way down, i asked what that was and he told me it was scar tissue and arthritis. Blessings, L Kaiser Art, Photography and more http://www.kaisercreations.com Healing Solutions http://healingsolutionsbycathyandlaura.vpweb.com/default.html Desert Fire’s Art Community: http://desertfireartcommunity.yuku.com/ Ghost/Paranormal website: http://azdesertfire.tripod.com ________________________________ From: jalbert <jalbert6855@...> spinal problems Sent: Wed, July 7, 2010 7:28:07 AM Subject: Re: Re: New here Yes you have to really research who is doing the work on you. A co-worker of mine abused his body so badly from heavy lifting all his life. He had to go in and get the rods placed onto his spine. Now he is in worse shape than before. I guess they nicked a nerve to his right leg and he has to wear a brace on his right leg because he falls over quite a bit. The brace stops his leg from giving out and him falling over. He actually finds humour in it. I guess that must be what keeps him going like he does Re: New here Spinal fusion is a rough surgery to go through. Be sure to make sure the doctor knows what he/she is doing. Also look up the results of this kind of surgery. I had it and I know several other people that has had it, and it does not do a lot of good. Like I was told by my doctor, I hurt before surgery and I will hurt afterwards. The pain does not really go away for most of us. > > Hello, I have been lurking for couple months this is my first post. My son was >diagnosed at 4years old with Chiari/holocord syringomyelia,scoliosis... He is >now 11yrs old has had 2 chiari decompressions and a syringopleural shunt placed >over the last several years. He has been braced off and on for years for the >scolio..IT recently has progressed to around 50 degree c curve, they are now >talking lower spinal fusion to keep it from getting worse as he grows...Has >anyone had this done & what are the outcomes , even if it was years ago do you >have pain now???? thanks for any help > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2010 Report Share Posted July 7, 2010 Thanks for all the responses. My son has the other 3 surgeries because his symptoms were worse, He does have spinal cord damage from the syrinx is why they decided on shunting his spinal cord. I have consulted with Dr. Bridwell who is listed as a spinal expert. I just hate to put him thru another rough surgery and dont want anymore further damage to him. > > > > Hello, I have been lurking for couple months this is my first post. My son was diagnosed at 4years old with Chiari/holocord syringomyelia,scoliosis... He is now 11yrs old has had 2 chiari decompressions and a syringopleural shunt placed over the last several years. He has been braced off and on for years for the scolio..IT recently has progressed to around 50 degree c curve, they are now talking lower spinal fusion to keep it from getting worse as he grows...Has anyone had this done & what are the outcomes , even if it was years ago do you have pain now???? thanks for any help > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2010 Report Share Posted July 12, 2010 Hi Mom. You have come to a good place. Many of us have had hip/knee replacements and we are from all over the English speaking world. And perhaps other places as well! If you ask specific questions, I'm sure you will get some good answers. All the best, Joan, TKR Hospital for Joint Diseases 12/04/09 NYC, currently in North Yorkshire ________________________________ From: " momtomonsters@... " <momtomonsters@...> Joint Replacement Sent: Sun, July 11, 2010 4:18:33 PM Subject: New here Hello all, I am a 44 year old with two very damaged knees. Prior injury and lyme disease has taken its toll on both. I hope to find lots of information about knee replacement surgery and aftercare. Thanks Momtomonsters Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2010 Report Share Posted July 12, 2010 Hi Mom, I understand what you mean about Lyme and Joints leading to needing replacements. Are you aware of the Lymestrategies Group? There are a couple of others as well. If you need any Lyme Group info, let me know, okay? ----------------------------- From: " momtomonsters@... " <momtomonsters@...> Joint Replacement Sent: Sun, July 11, 2010 4:18:33 PM Subject: New here Hello all, I am a 44 year old with two very damaged knees. Prior injury and lyme disease has taken its toll on both. I hope to find lots of information about knee replacement surgery and aftercare. Thanks Momtomonsters Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 my insurance considers 12 + moderate to severe. my sons # was 20 and he is not covered but we decided to go ahead and band. his head is looking amazing...really seeing results from a week on...very happy money well, but not happily spent. how old is your son? we banded at 6 months and he will wear it for 3 months (so until he is 9 months). the later you band the longer the process, we have seen really great results. good luck deciding. i always say if it can be fixed, fix it. you will feel better and have no regrets.From: Jamers <jamiemckown@...>Plagiocephaly Sent: Wed, July 28, 2010 4:44:09 PMSubject: New here Hi all, I just joined today. Going to Cranial Tech tomorrow for my son's digital imaging and he will have his band in 2 weeks. Honestly, it has been a tough decision on what to do. His head doesn't look that bad, but in the back I can tell. He does have facial asymmetry, but it is barely noticeable. His cranial vault was 13 I think. His ears were slightly off also. We really struggled as he looks so perfect already, but I don't want this to bother him in the future. Our insurance is not covering it either, but from what I've heard, that is pretty common. Has anyone on here had similar CV numbers? We kept thinking, what if it fixes itself, but what if it doesn't? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 Hello ,Welcome to the group. 13mm asymmetry is significant. You don't mention your son's age, but studies show that after 5.5 months of age, little correction will occur without banding. You are doing the right thing. Prior to banding, my daughter's measurements showed 13mm asymmetry(scanned)/14.5mm(neurosurgeon's caliper measurements.) She also had a 6mm ear shift and right front bossing. She was banded right at 8 months and corrected to 2.47mm in about 15 weeks. Our insurance company did cover her band.Good luck!-AmyFrom: Jamers <jamiemckown@...>Plagiocephaly Sent: Wed, July 28, 2010 4:44:09 PMSubject: New here Hi all, I just joined today. Going to Cranial Tech tomorrow for my son's digital imaging and he will have his band in 2 weeks. Honestly, it has been a tough decision on what to do. His head doesn't look that bad, but in the back I can tell. He does have facial asymmetry, but it is barely noticeable. His cranial vault was 13 I think. His ears were slightly off also. We really struggled as he looks so perfect already, but I don't want this to bother him in the future. Our insurance is not covering it either, but from what I've heard, that is pretty common. Has anyone on here had similar CV numbers? We kept thinking, what if it fixes itself, but what if it doesn't? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 Hi , Welcome to the group. I would say you've made the right decision. Our specialist (cranio facial plastic surgeon) recommends banding at 10mm or higher. Some parents band a bit lower. I think you'll be pleased that you're banding when all is said and done. It is really hard to know if a baby will correct on its own, but definitely there are some that don't. My daughter wore a band for brachy (flat in back with extra width). She did well in her band, but I was still hoping for post band improvement. She's 4.5 yrs now and I haven't really noticed any, so I'm pretty sure we wouldn't have seen much change without a band. Best of luck with the adjustment (to wearing a band) and keep us posted on his progress. -christine sydney, 4.5 yrs, starband grad > > Hi all, > > I just joined today. Going to Cranial Tech tomorrow for my son's digital imaging and he will have his band in 2 weeks. Honestly, it has been a tough decision on what to do. His head doesn't look that bad, but in the back I can tell. He does have facial asymmetry, but it is barely noticeable. His cranial vault was 13 I think. His ears were slightly off also. We really struggled as he looks so perfect already, but I don't want this to bother him in the future. Our insurance is not covering it either, but from what I've heard, that is pretty common. Has anyone on here had similar CV numbers? We kept thinking, what if it fixes itself, but what if it doesn't? > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2010 Report Share Posted July 29, 2010 I think everyone questions if they made the right decision or not. I struggled with serious guilt for the first little while about putting Kieran through it, but when you see the results you'll know that it's all been worth it http://fixin-a-flat.blogspot.com > > Hi all, > > I just joined today. Going to Cranial Tech tomorrow for my son's digital imaging and he will have his band in 2 weeks. Honestly, it has been a tough decision on what to do. His head doesn't look that bad, but in the back I can tell. He does have facial asymmetry, but it is barely noticeable. His cranial vault was 13 I think. His ears were slightly off also. We really struggled as he looks so perfect already, but I don't want this to bother him in the future. Our insurance is not covering it either, but from what I've heard, that is pretty common. Has anyone on here had similar CV numbers? We kept thinking, what if it fixes itself, but what if it doesn't? > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2010 Report Share Posted July 29, 2010 My boy has a CV of 10, mid face 6 and skull base 6 and he was banded and actually going to need a second one. My girl has a CV of 6, mid face 3 and skull base 4 and just got her band yesterday. Jen Re: New here I think everyone questions if they made the right decision or not. I struggled with serious guilt for the first little while about putting Kieran through it, but when you see the results you'll know that it's all been worth it http://fixin-a-flat.blogspot.com > > Hi all, > > I just joined today. Going to Cranial Tech tomorrow for my son's digital imaging and he will have his band in 2 weeks. Honestly, it has been a tough decision on what to do. His head doesn't look that bad, but in the back I can tell. He does have facial asymmetry, but it is barely noticeable. His cranial vault was 13 I think. His ears were slightly off also. We really struggled as he looks so perfect already, but I don't want this to bother him in the future. Our insurance is not covering it either, but from what I've heard, that is pretty common. Has anyone on here had similar CV numbers? We kept thinking, what if it fixes itself, but what if it doesn't? > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2010 Report Share Posted July 29, 2010 Hudson is just over 6 months old. I don't remember his ear and eye numbers, but I think one was about 7 and the other might have been 4. The funny thing is that they photo study pics they took hardly show anything. There is one photo, the birdseye, where you can see it. But it doesn't look that visible in the other pics. When I look at it in person and feel it, it is def there. Thanks for all the comments. I'm a little nervous, but at least it's not surgery or something like that. He probably won't even notice. And sorry if I'm posting this in the wrong spot. This is my first time on these boards and wasn't sure where to reply. > > Hi all, > > I just joined today. Going to Cranial Tech tomorrow for my son's digital imaging and he will have his band in 2 weeks. Honestly, it has been a tough decision on what to do. His head doesn't look that bad, but in the back I can tell. He does have facial asymmetry, but it is barely noticeable. His cranial vault was 13 I think. His ears were slightly off also. We really struggled as he looks so perfect already, but I don't want this to bother him in the future. Our insurance is not covering it either, but from what I've heard, that is pretty common. Has anyone on here had similar CV numbers? We kept thinking, what if it fixes itself, but what if it doesn't? > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2010 Report Share Posted July 30, 2010 Hi . Hope all goes well with your son's appt. We had our son's digital images three weeks ago and he has had his band for almost two. So far we and the techs have been sooo pleased with his progress. His was considered severe so to see improvement is exciting. Good luck with the process. I hope all goes well:) The feedback with the group has been helpful as too. -- In Plagiocephaly , " Jamers " <jamiemckown@...> wrote: > > Hi all, > > I just joined today. Going to Cranial Tech tomorrow for my son's digital imaging and he will have his band in 2 weeks. Honestly, it has been a tough decision on what to do. His head doesn't look that bad, but in the back I can tell. He does have facial asymmetry, but it is barely noticeable. His cranial vault was 13 I think. His ears were slightly off also. We really struggled as he looks so perfect already, but I don't want this to bother him in the future. Our insurance is not covering it either, but from what I've heard, that is pretty common. Has anyone on here had similar CV numbers? We kept thinking, what if it fixes itself, but what if it doesn't? > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2010 Report Share Posted July 31, 2010 Thanks ! Did your son have any problems sleeping with it? They said our son was moderate. I know I'll have a lot of questions once we get it. I want to try to decorate it also. Maybe make it look less medical or something. Good luck with your son! Great to hear that you are already seeing progress. - > > > > Hi all, > > > > I just joined today. Going to Cranial Tech tomorrow for my son's digital imaging and he will have his band in 2 weeks. Honestly, it has been a tough decision on what to do. His head doesn't look that bad, but in the back I can tell. He does have facial asymmetry, but it is barely noticeable. His cranial vault was 13 I think. His ears were slightly off also. We really struggled as he looks so perfect already, but I don't want this to bother him in the future. Our insurance is not covering it either, but from what I've heard, that is pretty common. Has anyone on here had similar CV numbers? We kept thinking, what if it fixes itself, but what if it doesn't? > > > > - > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2010 Report Share Posted August 1, 2010 My son is just over 6 months. So we are at about the same place as you. They told us he would wear it for 2-3 months. That is really encouraging that you are already seen results in just a week. After seeing the 3d images, I feel very confident in our decision to band. I agree, if we can fix it, why not. > > my insurance considers 12 + moderate to severe. my sons # was 20 and he is not > covered but we decided to go ahead and band. his head is looking > amazing...really seeing results from a week on...very happy money well, but not > happily spent. how old is your son? we banded at 6 months and he will wear it > for 3 months (so until he is 9 months). the later you band the longer the > process, we have seen really great results. good luck deciding. i always say if > it can be fixed, fix it. you will feel better and have no regrets. > > > > > ________________________________ > From: Jamers <jamiemckown@...> > Plagiocephaly > Sent: Wed, July 28, 2010 4:44:09 PM > Subject: New here > > > Hi all, > > I just joined today. Going to Cranial Tech tomorrow for my son's digital imaging > and he will have his band in 2 weeks. Honestly, it has been a tough decision on > what to do. His head doesn't look that bad, but in the back I can tell. He does > have facial asymmetry, but it is barely noticeable. His cranial vault was 13 I > think. His ears were slightly off also. We really struggled as he looks so > perfect already, but I don't want this to bother him in the future. Our > insurance is not covering it either, but from what I've heard, that is pretty > common. Has anyone on here had similar CV numbers? We kept thinking, what if it > fixes itself, but what if it doesn't? > > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2010 Report Share Posted August 4, 2010 9 is the beginning of some tough times for girls who are AS etc. My daughter has had the same diagnosis as your daughter, and she is now almost 16.. We have really struggled, but have made it this far, and all I can say is take it one day at a time. Just now we started my dd on Intuniv and I hope it works. She has been on one med after another. They work for about a year, and then her body seems to adapt to them and they don't work anymore. When she was in 6th grade we moved to an area that had a charter school for dyslexic students, and she went there successfully for middle school. It became private and we had to pay, but that worked, because they needed our money, so were willing to work with her. But, the point that I wanted to make was, she needed the dyslexic help and public schools do not do dyslexia. They don't know how to do it, and the reading method that is needed is Mood Bells Phoenetic Program and it is costly and time consuming, so public schools don't do it. My daughter couldn't do regular work without first learning the basics. Now she has that mastered and I have hope that she will survive. She will never be able to spell, but maybe she can use a computer. So, maybe your daughter has a learning problem that they have not diagnosed or recognized. The schools will not diagnose dyslexia. I could not home school my daughter. She would not do anything for me. Plus, my Algebra skills are lousy...LOL she is better at math than I am.. From: Sharon <simplycraftymom@...> Sent: Tue, August 3, 2010 9:37:29 AMSubject: ( ) New here Hi all I am new to this support thing. My oldest dd, 9,was diagnosed with ADHD and Aspergers and now possible ODD or mood disorder. We have been working with a therapist weekly in home and it seems to work for a short while then she gets worse. We have an appt for meds coming up as I am trying that route again. She was on ADHD meds at first but that did nothing to stop the bad behavior in school. We did the homeschool thing with K12 and the virtual school but that got us no where as she refused to work on anything so she is going to a charter school this year. I am at my wits end today as I am trying to get her on a routine to follow and she follows for a few days then decides she wants to deviate from the routine. I am confused cuz I thought Apsies were supposed to like routine. She has a 6 year old sister that likes routine and tries to follow the routine every day even tho she doesn't have to. I guess I just am at a loss for what to do and am looking for some quides to show me how to deal. I am so stressed that I haven't even been working (in home worker), I am constantly tired all the time. Our only last resort is a hospital and I really don't want my dd in one. Any help would be great. ThanksSharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 > > Hi Bee, > > Quick overview of my history: > multiple antibiotics as a young child for sore throat, tonsils out at 5 years, > teenager - antibiotics for acne, > college - birth control pills (that's when all my troubles really seemed to start), > yeast infections - many, > digestive issues started, > on multiple antibiotics for various infections, > had 1st child at 29 (this is when the fecal body odor started, not all the time), > multiple antibiotics for boil on back and two rounds for strep that would not go away, > severe cravings for sugar and alcohol, > still off and on with birth control pills, > saw doctor for candida - on nystatin for awhile, tried diflucan, became pregnant again, > tried every type of diet possible, +++Hi Kim. Welcome to our group and thank you for your introduction. > > I was reading your website and it really hit home. Most of what you recommend I have found to be what is best for me. I've been to many different types of doctors and realized that what they are having me do isn't really what is working for me. I do best on meat and vegetables. Your supplements are similar to what I have found to work for me too. > > Green things like chlorella and wheat grass and spirulina seem to cause havoc on my system and can even cause a fecal body odor. I always thought I was doing something wrong. +++That's wonderful you see the sense in my program! > > My questions: > > I had been taking chinese herbs to hep with my hormonal imbalance and they seemed to work but made the time during my period even worse. The doctor recommended 5HTP and this helps, but I didn't want to keep adding supplements and the expense just keeps building. I stopped the chinese herbs and I'm getting really weepy phases. I'm still on chaste tree, so I was wondering if I should just try to normalize a little before stopping the chaste tree or if I should stop it now? +++You can stop taking any of those suddenly without any ill effects. > > I had taken coconut oil before but I think I started with too much. I just started a few days ago with 1 teaspoon in am and one in pm. Before, I ended up with fatty smelly sticky stools. I had thought that my fat digestion wasn't working and tried low fat. That didn't work. I'm just going to add more as it seems comfortable. +++Ensure you follow Curing Candida, How to Get Started: http://www.healingnaturallybybee.com/articles/intro1.php > > Also, I am taking a multi vitamin (RAW ONE for women) and this one really seemed to be working for me. I was planning on finishing up what I had before stopping and then adding B vitamins and E like you recommend. Any thoughts? +++It won't hurt you to finish them up, since no company can cram that much into one pill and have it provide the correct amount of nutrients, nor the quality needed, so they are mostly a waste. +++But you can take them in addition to taking all of the supplements I recommend since you won't be overdoing it. > > If I get my hormonal issues straightened out do you think that my thyroid will work better and stop needing thyroid medication? I'm on a low dose now. +++Most members of this group have been successful in lowering their thyroid meds and going off them completely. All you need to straighten out your hormonal issues is this diet and all of the supplements. Your body is smart enough to balance out all hormones and nutient levels when it gets what it needs to do its job. +++Also toxins make all cell membranes rigid/stiff so that makes any organs or systems malfunction, and it also means hormones that are being produced aren't able to get into rigid cells. The same is true for nutrients and even water getting in. > > Is fecal body odor related to yeast? You can see from my history that my system has had quite the shock to it. I know it is related to what I eat but I could never quite pin point what was causing it. I new higher fat was good for me, yet the nuts would make it worse. Now I know that it is the way they are processed. +++Fecal body odor is mainly caused by the large colon being forced to ferment carbs because they were not properly prepared before eating them, since our bodies are not able to break down fibres (which is the cell wall of all plants foods, i.e. cellulose, etc.). There are only 2 ways to break down fibres and that is by cooking plant foods long enough, and fermentation like sauerkraut is made. +++If you don't cook plant foods long enough or ferment them, your colon has to do the job, which turns into a seething mass of yeast, bacteria, etc. In other words it becomes a fermentation chamber that products horrible gas, bloating, and spread throughout the body causing body odor, in addition toxins being released. +++You can therefore be very smelly indeed. See this article about breaking down plant cell walls: http://www.healingnaturallybybee.com/articles/veg3.php +++Also read this Chapter from the Fiber Menace book: http://www.gutsense.org/fibermenace/fm_chapter1.html The best in health, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2010 Report Share Posted August 18, 2010 Hi Cheri. I too live in SoCal and my son just got his Doc Band yesterday morning. I felt like it took forever to get the process going & to finally get the band but now that he has it I too admit I am very anxious about everything! -Regarding the ear openings on our band - one is pretty wide to the point that it will never touch the ear even after shifting. But the other side is much narrower and if he is playing or sleeps on that side the band shifts just a bit and pushes on his ear. I noticed this happen at the initial fitting and asked our tech about it and she assured me that this was not a problem and that it was normal for the band to shift. She told us that if it appeared to bother our son we could undo the velcro and re-adjust so that the helmet isn't touching the ear. He played all day yesterday and every time i looked at him it was against the ear but he didn't seem to mind it at all. -I asked about a fan as well and was told that it was fine to use a fan but to put it on low. -my son is on the larger side as well but I'm still not sure his clothing would fit over the band without a bit of a struggle. He was sweating pretty badly in his band yesterday - not sure if it was due to it being his first day and his body not being used to it or if it was due to the hot weather - so we removed it every few hours for just a few seconds to wipe off his head and to try and soak up some of the sweat from inside the band. We also have to remove the band when we change him to do a neck stretching exercise so we use a towel to pull as much sweat off the band at that time as well. We also dress him during one of his 1st changes since the band will be off for the exercise anyway. These little breaks for the exercise and to wipe the sweat are never longer than a couple of minutes as we don't want the band of any longer than it has to be. Our tech advised us to keep his room cooler than we usually do by opening windows or using a fan and to only dress him in a onesie - no pants or shorts or long PJs - as that will help him feel more comfortable and will also help with the red marks that are made worse by the sweating. We did this last night and he slept all night with no problems and his redness was way less than it had been yesterday during the day even after having it on for such a long span without a break. Our child care provider has cared for children wearing the bands before and she reassured me that removing the band even every hour for just a minute to wipe of the sweat wouldn't hurt the process. She had to do this for a few of the children she had with bands and all still had wonderful results. She just reminded us not to keep it off but for a minute or two to wipe it out and then put it right back on. We haven't had him out running errands or anything yet but I am expecting questions and looks once we do. We have our reponse ready as well and hopefully it will educate people about this problem since for me I had never heard of plagio or brachy prior to our doctor giving us our prescription for an evaluation. Have you decorated the band or do you plan to? Or will you just leave it white? I want to decorate it but I'm not a creative or artistic person so if you hear of any great resources or places that decorate in our area please let me know! I think i want to do decals or stickers or at least use someone quick and local as i don't want to have the band off for any time outside of the one hour if possible. Lastly - do you have any issue with the band across the forehead coming a bit forward and squishing down on his eyes almost causing him to squint or squish the skin between his eyes? Our band keeps doing that to our son and we try to re-adjust but it goes right back. the tech said it was fine but it looks so uncomfortable having his forehead and eyes squished down a bit but he doesn't seem to mind so maybe its all in my head Thanks & Good luck to you & your son!! Wendi > > Hello, > > I've been reading the archives and catching up on posts the last few weeks. > My son got his Doc Band last Thursday to treat his brachy which was measured > at 94%. I had been trying to deal with the flat spot since he was 8 wks > using positional techniques but nothing helped. I had to wait until he > reached 4 months before our insurance would cover the little bit that they > did. > > So the break in period went fine. He didn't really care that he was wearing > it until it was time to goto bed and he couldn't rub is eyes like he likes > too. Poor guy. He did develop a pretty bad red spot on his right temple this > last Sunday so after going into the CT on Monday I was told to leave it off > until the spots gone. I put the band back on tonight and hopefully all goes > well. I'm going in at 10 pm to take it off and check for redness. We've had > some pretty hot weather here in SoCal this last week and I'm looking forward > to it cooling down for his sake. I think his sores happened because I didn't > take it off soon enough when he was hot and sweating. > > This weekend we were out and about several times. I really wasn't sure what > type of reactions I'd get to people seeing him wearing it. I admit I was a > bit anxious. So far nobody has even asked me about it. They either ignore > him or they stare and just don't ask. I'm prepared with my reply for when I > am asked about it so either way, I just thought it has been interesting the > lack of inquires. > > I have a few questions that I've been wondering about since I've actually > started this journey. > > 1. Those with the Doc Band, how close to the ear was the band on the side > opposite the Velcro? My son's is pretty close to his ear and when it shifts, > it bends it just a bit. I'm kind of annoyed that the opening for the ear > wasn't placed better. Is that a common problem and how worried should I be > about the ear bending over? > > 2. After cleaning it with alcohol, is it okay to put it in front of a fan on > high? The first few days it got kinda stinky. I'm anticipating it happening > again since we're starting over. The fan really helped dry it faster. > > 3.Dressing, do most of you have to take the band off when you're dressing > your kids? My son is a pretty big baby so he's already wearing larger sizes > that are on the bigger end right now on him. Guess that's a good thing. > > 4. In the hot weather, do you just say every 2 hours you'll take it off real > quick to wipe their heads and the inside of the band? I'm just trying to > avoid the problem we just had with the red spot forming. > > I'm so looking forward to a time when I don't have to worry about his head > shape and whether the way he's laying is making things worse. I'm finding it > hard to relax when he's wearing the band. Should I continue to be careful > the way he's laying? CT says no, I don't need to worry. And he can sleep in > any position he likes, which is flat on his back of course. > > Thanks in advance and thanks for the supportive group. > > Cheri & , 4 1/2 months > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.