Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Thank you everyone for the warm welcomes. :-) Hi a, What state are you in? We successfully filed a state ed complaint last year. Good luck to you. It's been a long hard road, as I'm sure it's been for you too. NY " Hi . Welcome to our group. It sounds like you know what you want and are doing what it takes to get there. I am right there with you. We have just filed a State complaint and are about to go Due Process. a Hunter PDD-nos ADHD PDD-nos " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 > Sometimes newbies send their first email to the listowner instead >of directly to the list. So I will forward it when that happens. >That's why it came from my addy. ok I thought there might be two >roxanne's lol.>>>>>>>>>>>>>>>> WHY is it that when replying to a post that nobody puts >>>>>> before or after what they are replying to????????? As to me the stuff typed above is ALL from ONE person. It is isn't it???? Marj who does put the >>>>>>>>>>> before and after as this is email/computer etiquette. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Hi. We're in Virginia. Did you go Due Process or just the State Complaint or Both? And can you tell me details? I have no idea what to expect. I just filed last week. I have an eight page typed letter of what happened and a huge stack of paperwork that backs up my claims. Will they read it? I hope so. I spent days on it. We have had issues for over a year now. All help appreciated. Thanks, a > Hi a, What state are you in? We successfully filed a state ed > complaint last year. Good luck to you. It's been a long hard road, as > I'm sure it's been for you too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Hi a, I'm in NY and our hearing date is coming up. My state ed complaint was last year. It was 15 pages, with over 150 pgs. of supporting documentation. I organized my documentation and numbered it to make sure they could easily find the answers. :-) They did read everything and I received a call from the state immediately. Even though most of the items were found in my favor, the corrective actions were minimal. But the good thing is, it works in my favor in a hearing, to show how long the district has been non compliant in certain situations. I didn't want to go through all of this. I just wanted my child to receive a regular education with properly trained staff. It was difficult to be a true member of the committee, and initially I was passive and believed everything. But when my child was placed in a two person restraint for running in the hallway, I knew I had to become educated real quick. Since then, I have gone to many Asperger's, IEP, IDEA, etc. conference that comes along, to learn what I can, as I'm sure most of you have :-) I would be more than happy to give you any specific details of the complaint or hearing requests if you'd like further information. " Did you go Due Process or just the State Complaint or Both? And can you tell me details? " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Hi , I've been following your determined advocacy for your son on the IEP Guide group. Welcome to this one! (mom to Georgia who is 6 1/2, dx HFA, SID, CAPD, etc. but is very sweet, bright and artistically talented, too. We're taking an IEP breather this year and homeschooling. Only a parent of a special needs kid could understand how homeschooling is less work than sending the child to school!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 Hi , Thanks so much! It's nice to know there are groups like this to focus on " Asperger's " . My little guy is so unique, that it's often difficult for others to understand, unless they live the same life so to speak. :-) I'm always open to finding what resources are out there to help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 Wowza. I was afraid this was the first step of many to come. I wrote in sequence 9 typed pages. I have a huge stack of documentation to support our claims. I have it in order. If they look at every time I say enclosed it will easily all fit together. Maybe I should number it too. I had it ready to send today. I'm sad that actions taken were minimal. I figured as much. The hearing is Due Process, right? I take it you still had to go that route to actually get a decent IEP in place? It was looking like that would have to be our next step. How many months did you wait between filing your Complaint and going Due Process? And how many months has it taken to get to the hearing? Also how is the staff now? Why after all that were they still unwilling to sit down and fix things w/o going to court? I did not want to do this either, but my oldest was threatened by the vp last year that he would be removed from school on the grounds he was a security risk. This was due to my son running from him during a meltdown. Thanks, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Welcome to the list. The FAQs of this list is a goo dplace to start. Note that one should not do chelation if the individual has mercury amalgam dental fillings. S > HI <BR> I am a new member to this group and i am the mother for a 51/2 yr old<BR> boy with autism I have recently Started my path on bIomEDIcal<BR> intervention so faR i am dOIng gfcf diet[also sugar and yeast<BR> free]WItH him I AM ALSO trying DMG and folic AcId.These DAys i AM<BR> readINg A LOt AbOUT mERCURY TOXICItYand chelatIon IN kids with autism<BR> so this will be some thing i would try with my son in the future.Is<BR> there any website that DIScRibes tHe chelation pROcess in a vERY<BR> SIMPLE manner if so pls share it with me .Also i am loOkINg for a good<BR> Dan dOCTOR .CAN any of ListmATES GIVE mE a reFFERAl foR a good DAN<BR> Doctor who you have worked with. I live in northerN cA BUT I WILLiNg<BR> To travELl To other NeIgHBouring sTates also pls help mE FIND A good dr<BR> Thanx,clk<BR> =======================================================<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 > there any website that DIScRibes tHe chelation pROcess in a vERY > SIMPLE manner if so pls share it with me . You can start with mine, if you want. http://www.danasview.net/chelate.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Hi Issam! > I have aquestion: My PA seem to lessen whenever I contract a cold or a mild flu. The Arthritis lessens > and I actually have more energy to do things and much less pain than usual. Has anyone else encountered > this phenomenon? I see that you joined just now! A few days ago I reported the exact same observation. I had a flu, the first in a pretty long time, and it was coincident with a reduction almost to zero of psoriasis symptoms, and to a full zero of the PA. As the flu ended, the P and PA set back in. There IS a clear relationship. The question is in which way it works: Either the flu gives the immune system enough to do so that it stops attacking the own body, or otherwise it might be that something causes a temporary immune depression, which improves P and PA but makes the body prone to get infected by flu virus, which are around us almost permanently. Cheers, Manfred. -------------------------- Visit my hobby homepage! http://www.qsl.net/xq2fod -------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Hello Manfred, Yup. I just joined. Good to know that I'm not alone in experiencing this phenomenon. i agree with your observation. I was thinking that it might be a good experiment if one gets injected with a flu shot to see if that will give the immune system something to do and to get its mind off attacking the rest of me. Also thought to tell my doctor that I'm going overseas - say to Africa or Central America - and try to get a Malaria shot or whatever disease is big these days in these areas. What do you think? Is this the act of a desparate man? Or am I being " scientific " like Dr. enstein by experimenting on myself? Issam Ed Note I understand the desperate search for understanding. I think it is a good idea for a few of us to experiment. Just do your homework first Uh and before you get that shot for malaria look it up. I dont remember exactly at the moment (quinine, chloroquine?) but one of the preventative treatments for malaria is said to cause psoriatic flares! Orin [ ] Re: new member Hi Issam! > I have aquestion: My PA seem to lessen whenever I contract a cold or a mild flu. The Arthritis lessens > and I actually have more energy to do things and much less pain than usual. Has anyone else encountered > this phenomenon? I see that you joined just now! A few days ago I reported the exact same observation. I had a flu, the first in a pretty long time, and it was coincident with a reduction almost to zero of psoriasis symptoms, and to a full zero of the PA. As the flu ended, the P and PA set back in. There IS a clear relationship. The question is in which way it works: Either the flu gives the immune system enough to do so that it stops attacking the own body, or otherwise it might be that something causes a temporary immune depression, which improves P and PA but makes the body prone to get infected by flu virus, which are around us almost permanently. Cheers, Manfred. -------------------------- Visit my hobby homepage! http://www.qsl.net/xq2fod -------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 > HI > I am a new member to this group and i am the mother for a 51/2 yr old > boy with autism I have recently Started my path on bIomEDIcal > intervention so faR i am dOIng gfcf diet[also sugar and yeast > free]WItH him I AM ALSO trying DMG and folic AcId.These DAys i AM > readINg A LOt AbOUT mERCURY TOXICItYand chelatIon IN kids with autism > so this will be some thing i would try with my son in the future.Is > there any website that DIScRibes tHe chelation pROcess in a vERY > SIMPLE manner if so pls share it with me Dana's website, which she already gave, has a page on chelation: http://www.danasview.net/chelate.htm The FAQ for this list has SOME info on chelation, if you have not already read it, it may be helpful: /files/Mercury-Autism%20FAQ I also like this site, but I'm not sure if it is quite as simple: http://www.healing-arts.org/children/holmes.htm > .Also i am loOkINg for a good > Dan dOCTOR .CAN any of ListmATES GIVE mE a reFFERAl foR a good DAN > Doctor who you have worked with. I live in northerN cA BUT I WILLiNg > To travELl To other NeIgHBouring sTates also pls help mE FIND A good dr > Thanx,clk I'm sorry I don't have a doctor to recommend. (I also live in Northern CA). In case you are interested, there is a parents biomedical meeting in person once a month in Santa Clara. good wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 Hi Terri, Welcome to this list !! It's a super place to get info. and support from. I fully understand your reservations, I think in your place I would be looking to try enzymes first aswell. Have you looked at the Houston's site ? http://216.114.78.114/webcenter/sites/HNI/Section.asp?SID=3538 have you done any reading up on enzymes ? http://www.enzymestory.com/ http://www.enzymestuff.com/ http://www.danasview.net/ Many people are often cautioned to start with a small amount and work up until they find what works. There can also be some regression-type behaviour while issues are dealt with or if there is a yeast problem. It is possible to mix the enzymes in a drink (not hot) or into food (for some they are more effective this way) if your little one cannot manage capsules. good luck Julea : o) The purpose of life is to live a life of purpose. On the human chessboard, all moves are possible. www.emagforall.netfirms.com --- Outgoing mail is certified Virus Free by AVG so it wasn't me ) Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.528 / Virus Database: 324 - Release Date: 16/10/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 > Hi > I am new to the group and looking into enzymes for the first time. > My 3 year old has autism. He is very small for his age and I > hesitate to do the GFCF diet because of this. He seems to need all > the food he can get. If anyone can point me in the right direction > on how to start with enzymes I would really appreciate it. > Thank you, > Teri When my son was 8 months he was first having problems whith ears and the alternative doc. told me to stop all milk products. After 2 weaks the nani told me " he is so attentive and alert " . I thouth " oh, this is not what i ment " . forgive my english. We stopped the diet. A very big mistake. We started it again at 2.5 years. The differnt was uge: He start loking at us, reply, smiled to his uncles (never recogniez before). Tow years ago we took the gluten off his diet. You must try do it - atleast the casaien - it is so importent!!! I now try the enzymes - he lost 1 Kg so I got feared - anyone can tell me if we have to take it 1\4 hour before? Nili Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 > I now try the enzymes - he lost 1 Kg so I got feared - anyone > can tell me if we have to take it 1\4 hour before? If you open the capsules first [and sprinkle the enzyme on food or mix it into apple sauce or something], then you don't have to wait before eating. If you take the capsules whole, some people find they need to wait about 15 minutes or so before eating, to allow the capsule to dissolve. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Teri, My daughter is also very small. I kept her on GFCF diet in spite of a gastro doc. objection. When I told the doc. I am going also on low protein and carb. diet she said I am going to starve the child. My Susie ate only vegetable soup with lots of fat and some meat. In a few months she put on weight (and ate and slept better too!). The gastro doc. told us then to keep to that diet for it obviously helps the girl! So my advice is: try the GFCF diet. You will see if it helps. > Hi > I am new to the group and looking into enzymes for the first time. > My 3 year old has autism. He is very small for his age and I > hesitate to do the GFCF diet because of this. He seems to need all > the food he can get. If anyone can point me in the right direction > on how to start with enzymes I would really appreciate it. > Thank you, > Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Many children who start SCD are low weight, too. Sometimes they lose a tiny bit at first, but they end up gaining and thriving. It seems to be an evening out thing. The ones who come overweight from eating so many complex carbs/sugars end up getting down to a more healthy weight after being on the diet. (I lost 2 pants sizes when I went on SCD with my son.) He was a good weight - always has been, but now he is stronger, and no bloaty tummy. son - 4yo ASD, SCD 7 1/2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 I'd ask for a dr's intervention. Why would they be against a natural remedy? If they are then they should spell out any negatives. You might try for help in a GNC type of place. They may know about dosages. a > Hi, > > My name is le and my son is almost 4 years old. He was > diagnosed with PDD-NOS last Friday. The doctor says he will > probably be Asperger's but he didn't talk early enough. I am > considering trying this B6 and magnesium I stumbled on the > internet. He weighs 32 pounds and I didn't know how much to give > him. I wondered if anybody has had good results from this. I would > love for some support in these methods that the doctors don't want > us to try. Also, could he still take his multi-vitamin too? > > I want to help my son, this has been a very long process and I > appreciate any information anybody can give me. > > Thanks, > > le from MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 Hi le, I would recommend you search in your area for a " DAN " doctor. They usually do work with parents on vitamins and such. DAN stands for Defeat Autism Now, I believe. Here is a short list for you state that I found online --> *** Missouri *** Tipu Sultan, M.D. 11585 West Florissant Ave. Florissant, MO 63033 ph: 314-921-5600 fax: 314-921-8273 Curt Dyer, M.D. 407 E. Wearensburg, MO 64093 ph: 660-747-5115 Bethany Klug, D.O. 4321 Washington # 2020 Kansas City, MO 64111 ph: 1-800-627-4360 or 816-753-4325 fax: 816-561-2170 , D.C. 211 S. Hwy. 169 Box 228 Gower, MO 64454 ph: 816-424-3858 fax: 816-424-3878 Roxanna > > > Hi, > > My name is le and my son is almost 4 years old. He was > diagnosed with PDD-NOS last Friday. The doctor says he will > probably be Asperger's but he didn't talk early enough. I am > considering trying this B6 and magnesium I stumbled on the > internet. He weighs 32 pounds and I didn't know how much to give > him. I wondered if anybody has had good results from this. I would > love for some support in these methods that the doctors don't want > us to try. Also, could he still take his multi-vitamin too? > > I want to help my son, this has been a very long process and I > appreciate any information anybody can give me. > > Thanks, > > le from MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 Dear " Scared " , Welcome to the club. We come in scared and get lots of verbal hugs and dr.mom advice and soon we realize that we are not alone. There is lots of info on this site (read back postings) and the Psoriasis Foundation site also gives a lot of information on PA as it is a part of psoriasis. Welcome, JudiRose > hello, > i just found this group , i am newly diagnosed with psoriatic > arthritis. i am 47 female from nh . i am so confused i don't know > much about this and im scared. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 Welcome Kurious Getting a new diagnosis can be scary. I hope this group will help answer some of your questions and fears. I know it has helped me a lot! Marti- -- In , " kureus2003 " <kureus2003@y...> wrote: > hello, > i just found this group , i am newly diagnosed with psoriatic > arthritis. i am 47 female from nh . i am so confused i don't know > much about this and im scared. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 Please use caution with any medications and natural remedies. I always ask about drug interactions. With children weigh is more of a factor in dosage. Someone a GNC may not have that type of knowledge. Even if you are looking for a " natural " approach a good dietician will explain how foods interact. It is all a matter of trial and error unless you are dealing with profound allergies. Remember arsenic is a natural drug. Good luck, in NJ ( ) Re: New Member I'd ask for a dr's intervention. Why would they be against a natural remedy? If they are then they should spell out any negatives. You might try for help in a GNC type of place. They may know about dosages. a > Hi, > > My name is le and my son is almost 4 years old. He was > diagnosed with PDD-NOS last Friday. The doctor says he will > probably be Asperger's but he didn't talk early enough. I am > considering trying this B6 and magnesium I stumbled on the > internet. He weighs 32 pounds and I didn't know how much to give > him. I wondered if anybody has had good results from this. I would > love for some support in these methods that the doctors don't want > us to try. Also, could he still take his multi-vitamin too? > > I want to help my son, this has been a very long process and I > appreciate any information anybody can give me. > > Thanks, > > le from MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2003 Report Share Posted October 29, 2003 I can appreciate your dilemma. My child too was not gaining enough weight for my or the pediatrician's comfort. He broke his leg at age three in a way that never should have happened. Due to that break, some special tests were done and we got the news he had osteopenia, due to a possible metabolic disorder. He had been GFCF, and that had put a little weight on him, firmed up his stool and allowed for some great developmental progress. However, here we were, measuring every morsel he consumed, he's breaking bones, and still not where we wanted him to be, the kicker was, he seemed to be reacting to more and more foods. Suffice to say, by the time we got to enzymes, his food repertoire was miserly, and I felt horrible about it, but, why put something in him, that his body obviously was only reacting to, and certainly was not nourishing him. Probiotics, Ojibwa Tea and Enzymes gave my son not only many more food choices, but he no longer needed the vitamins he'd been taking since he was 4 months old. We had actually used Super Nu Thera, but after the enzymes, some blood work showed he was absorbing all the nutrients he needed from his diet. I say entirely too much in these posts. But, as a parent who has had the same concerns, I'll say this. Elimination diets are useful tools, in that there may be some foods that your child will never tolerate, even with enzymes. However, too much of an elimination diet leaves the parent trying to supplement the vitamins the child isn't getting through the diet. DeFelice has a wonderful book out called Enzymes for Autism, also, Lipski has as book called Leaky Gut syndrome. You won't waste your money buying these. There's something to be said for having your own stack of reference material at 3am when your normally potty trained child has wet the bed for the third time that night, and you want to know if it's normal, and if this is worth it. New Member Hi I am new to the group and looking into enzymes for the first time. My 3 year old has autism. He is very small for his age and I hesitate to do the GFCF diet because of this. He seems to need all the food he can get. If anyone can point me in the right direction on how to start with enzymes I would really appreciate it. Thank you, Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2003 Report Share Posted October 29, 2003 Dear Kureus2003 -- Please don't lose heart. There is a lot of medical help available and of course you can learn a lot about PA on this site. Knowledge is power. Cheri [ ] new member hello, i just found this group , i am newly diagnosed with psoriatic arthritis. i am 47 female from nh . i am so confused i don't know much about this and im scared. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2003 Report Share Posted October 29, 2003 Welcome Twinnegge, Hope the group helps to lift your spirits. By the way-I have a PT who is a huge help to me with my PA and fibro-that would be cool if you could use the knowledge you learn to help people. Many therapists don't understand. PTs are cool I don't want to scare you but PA can be quite a debilitating disease. I have had it for 36 years and have substantial bone and joint damage. When i was growing up with the disease there weren't many options for us. Now there are so many-esp the newer class of biologics. One of them, Remicade has completely cleared my skin. Look under photos-under Marti Wa not to scare you but to see how bad this illness can get if not taken seriously (again-mine was taken seriously there just weren't too many options available to me) Good Luck! Marti > Hi all. I am a 26 year old male diagnosed last year with PA and it > has worsened a bit over last year. It started out with what I > thought was a trigger finger (I am a physical therapist), since most > of my pain was in my one index finger. After a cortisone injection > didn't work, and my finger was more sausage like, my return trip to > the hand surgeon yielded me a visit to a rheumatologist. He dx me > with PA and started me on Naproxen. I didn't really take them that > much initially, but over the last year, I have had terrible knee, hip > and neck pain. I had my knee scoped for torn cartilage and the > surgeon said the arthritis and inflammation in the knee was that of a > 60 year olds knee. So, Naproxen is working for me, but i have been > quite depressed of late. I am only 26, have psoriasis and my face and > scalp, have pain that is awful at times and have just been feeling > depressed about it all. I decided to join this to see if talking > with others in the same boat helps things at all. look forward to > reading everyones posts! 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.