Guest guest Posted February 18, 1999 Report Share Posted February 18, 1999 , A herx is short for jerish herxheimer reaction ( a mouthful isnt it).....it occurs when you are put on antibiotics and they start to kill off the lyme bacteria.....the bacteria release toxins into your blood stream.... creating a WORSENING of your symptoms.....some of my first herxes were so bad.I felt like someone had run over me with a truck or taken a board and beaten me from head to toe...DO NOT STOP TAKING YOUR MEDS AS THIS REACTION MEANS THERE WORKING....... welcome to the world of lyme....on my second case....if you want to unwind and chat lyme come to the MGH chat room on lyme...everyone is welcome.....lymebrain Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 1999 Report Share Posted February 19, 1999 george..... a " herx " is a jarish herxheimer reaction......basically it means that if the meds are working u will feel worse( the worst u have ever felt ) before u get better.......i happens because the abx is attacking the sprio's and they get riled up .....it is very unpleasant....however on the brite side u usually feel much beeter than normal after one.....as far as bands there our differant bands of infection indentified thru the western blot test .....only some of the are indicitive of lyme.......however i have said it before and will say it again LYME IS A CLINICAL DIAGNOSES.....BLOOD TEST ARE AT THE BEST 40% ACCURATE(PCR TEST).... most llmd pay little attention to the blood work....that 40% is only at Igenex or stoney hill.....living in nj we have a local lab that has never had a positive test yet.......local labs do not have a stringent critera when it comes to lyme testing ......even social sec. putws very little faith in the lyme blood work when it comes to lyme disability..... hope that helped a little Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 1999 Report Share Posted February 19, 1999 hoping someone could give the address and phone number of stoney hill lab. thank you in advance lea RMcmur3194@... wrote: > From: RMcmur3194@... > > george..... > a " herx " is a jarish herxheimer reaction......basically it means that if the > meds are working u will feel worse( the worst u have ever felt ) before u get > better.......i happens because the abx is attacking the sprio's and they get > riled up .....it is very unpleasant....however on the brite side u usually > feel much beeter than normal after one.....as far as bands there our differant > bands of infection indentified thru the western blot test .....only some of > the are indicitive of lyme.......however i have said it before and will say it > again LYME IS A CLINICAL DIAGNOSES.....BLOOD TEST ARE AT THE BEST 40% > ACCURATE(PCR TEST).... most llmd pay little attention to the blood > work....that 40% is only at Igenex or stoney hill.....living in nj we have a > local lab that has never had a positive test yet.......local labs do not have > a stringent critera when it comes to lyme testing ......even social sec. putws > very little faith in the lyme blood work when it comes to lyme disability..... > hope that helped a little > Reid > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 1999 Report Share Posted February 20, 1999 lea , sorry i can't help with that one.....i ve used igenex....it may be in karen forstners book.....everything u need to know about lyme disease .....this book is a must for anyone suffering from lyme i feel.... aReid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2001 Report Share Posted October 17, 2001 In a message dated 10/16/2001 9:50:52 PM Eastern Daylight Time, kaelyne@... writes: << I've noticed that none of the " mental " disorders, such as anxiety, depressive disorders are mentioned in her research. However, I can understand if prozac or paxil would help with the disorders mentioned more effectively. >> I think the two conditions you mention frequently accompany many illnesses. I firmly beleive that if the body does not feel well, the mind will follow....at any rate...I used priscription drugs for depression many years ago...and they were inneffective, with many side-effects. I then turned to Saint s Wort...I took it for six weeks in tea and it changed my life. It was very effective for my depression .....Foggs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 Depression is mentioned in her " Cure for all Diseases " Leo ----------- > I've read some of Dr 's research. > From what I understand, aren't flukes parasites, found in animals, > and are they not treatable through medication that is used in the > same > way for deworming? > Just curious. > Secondly: I've noticed that none of the " mental " disorders, such as > anxiety, depressive disorders are mentioned in her research. However, > I can understand if prozac or paxil would help with the disorders > mentioned more effectively. > Anyhow.. just questions anyhow. > > > Anik1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 In a message dated 5/23/2006 10:23:00 AM Eastern Standard Time, mystique2574@... writes: Anyone care to share, and please don't take this the wrong way, but in layman's terms, their experiences and how they handle it all financially? We went into a lot of debt in getting my son an appropriate program. My dh worked 2 1/2 jobs and I stayed home working with our son plus the other kids and oh yes, had a baby too. lol. Our furniture is scruffy, our fridge should be buried without honors, we have a kitchen table but no chairs yet (don't ask) and we all are in big need of clothing and other fun things. So we are just recovering from all the cost to get his program going. I guess our answer was to do without or do more with less and dh work more. I also think finding ways you can do as much as you can yourself is a good idea. Watch your ds get his speech therapy and try less therapy with more practicing at home with you doing the same activities. I know we did that with our ds when we could no longer afford any ST and couldn't find any help anywhere for more. He was between the B-3 program and school that long summer. So he got ST 2 times/month while we did whatever we could at home to help make it up. Tap into resources if possible. Get in the MR/DD, if you aren't, and get a casemanager. They "should" be able to help you find funding for your needs if it is out there. You might get help paying for some therapy that way. Push hard to get the school to do as much as possible as well. There is going to be a new funding source for summer services to keep in mind for ESY next year. I am in a group that raises money for ESY that schools won't give you. We handed out probably $6,000 in money this past spring. I don't know yet how many people were helped. But when the application is available again next spring, I will definitely post it and let people know. Roxanna ô¿ôDon't take life too seriously; No one gets out alive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 , Yes, it is very hard finacially and emotionally. Have you thoughT about the Autism Scholarship for your son? We started using this in January of 2006 and we LOVE it!!!!! FWIW, I grew up in Olmsted Falls. Debbie"If you want to know.. Ask!" <mystique2574@...> wrote: I have seen a lot of differnt figures flying around lately and am wondering.. how you all do it??Just before we started the process of buying a new home.. our son's testing, misdiagnosis and diagnosis drained our savings. We are renting a home at this time.. and barely making it paycheck to paycheck. Many weeks we are robbing peter to pay paul so to speak. I have been a stay at home mom since my daughter was born since she was a preemie and could not be put in daycare the first year of her life.. I attempted to go back to work a few times now.. losing my last 2 jobs to either caregivers that called to frequently for me to come get my son because they couldn't handle him or me calling off because I either did not have a caregiver or my son had therapy or doctor's appointments that required me to be there. My son was first diagnosed as being hearing impaired in both ears.. which I knew couldn't be the case since he could be upstairs and we could have the tv on the lowest volume but if Dora or came on and the theme song was playing he'd come running. We got a second opinion and soon followed up with a neurologist who gave us the diagnosis of ASD w/ADD. We were with the help me grow program but most of the help was geared towards the hearing impairment and we got the new diagnosis just 3 months before he got transferred out of help me grow and into the school district.. so everything we have done has pretty much been trial and error on my part. My son currently takes risperdal 2 mg a day.. and sees speech and occupational therapists as well as a child psychologist. He attends 2 preschools, our school districts as well as a private one in Middleburg Hts that we pay for because we weren't sure how the transition into the school district would be and he was already comfortable at MEEC. I've heard alot about ABA, Bio-medical, gfcf diets, supplements and tons of other things that I'm not familiar with and am not sure if we should try with my son. We did try the gfcf thing and he refused to eat any of the new foods whatsoever not to mention it was killing my entire food budget for 4 in just one trip to get his groceries. I have thought about taking him to Osteomed or Dr Demio.. but the fact that I know up front our Insurance won't pay a cent and we don't have the extra to put out for it is the main reason that we haven't done so. Anyone care to share, and please don't take this the wrong way, but in layman's terms, their experiences and how they handle it all financially? Also, I know that there are monthly meetings for ASGC, but I am unable to attend any of those since they are on Wednesday's before my husband gets home from work and we wouldn't be able to get a sitter to attend anyway. I am able to get a sitter on the weekend and have a place to meet in Brook Park that would not cost a thing to anyone. Would anyone be interested in meeting on say a Sunday afternoon for group discussions? I'll even provide the coffee! LOLI've also posted pictures of my kids in the photos section, what a great idea! (Btw.. Shane your son is absolutely precious!!) Thanks in advance.. and hope that no one minds me making this post..Sorry it ended up being so long!! Guess when I start rambling it is hard to get me to shut up.. LOL.. ok.. shutting up now!Hope everyone has a great day and gets to enjoy the sunshine! JOlmsted FallsProud Mom of igh, 5 and Kiernan 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 We have thought about it.. but from what I have seen we have to follow the guidelines of our school district IEP .. and well.. I'm still fighting with them on having the IEP state everything I want it to. He is progressing greatly.. but we feel it is because of a combination of everything we are doing.. they say they need data to change the IEP and to get that it might be best if we stop all outside assitance so that the school can see what happens. I can't justify letting him go backwards so that they can document how to get him to go forward. Anyone else encounter this? > I have seen a lot of differnt figures flying around lately and am > wondering.. how you all do it?? > > Just before we started the process of buying a new home.. our son's > testing, misdiagnosis and diagnosis drained our savings. We are > renting a home at this time.. and barely making it paycheck to > paycheck. Many weeks we are robbing peter to pay paul so to speak. > I have been a stay at home mom since my daughter was born since she > was a preemie and could not be put in daycare the first year of her > life.. I attempted to go back to work a few times now.. losing my > last 2 jobs to either caregivers that called to frequently for me to > come get my son because they couldn't handle him or me calling off > because I either did not have a caregiver or my son had therapy or > doctor's appointments that required me to be there. > > My son was first diagnosed as being hearing impaired in both ears.. > which I knew couldn't be the case since he could be upstairs and we > could have the tv on the lowest volume but if Dora or came on > and the theme song was playing he'd come running. We got a second > opinion and soon followed up with a neurologist who gave us the > diagnosis of ASD w/ADD. We were with the help me grow program but > most of the help was geared towards the hearing impairment and we > got the new diagnosis just 3 months before he got transferred out of > help me grow and into the school district.. so everything we have > done has pretty much been trial and error on my part. My son > currently takes risperdal 2 mg a day.. and sees speech and > occupational therapists as well as a child psychologist. He attends > 2 preschools, our school districts as well as a private one in > Middleburg Hts that we pay for because we weren't sure how the > transition into the school district would be and he was already > comfortable at MEEC. > > I've heard alot about ABA, Bio-medical, gfcf diets, supplements and > tons of other things that I'm not familiar with and am not sure if > we should try with my son. We did try the gfcf thing and he refused > to eat any of the new foods whatsoever not to mention it was killing > my entire food budget for 4 in just one trip to get his groceries. > I have thought about taking him to Osteomed or Dr Demio.. but the > fact that I know up front our Insurance won't pay a cent and we > don't have the extra to put out for it is the main reason that we > haven't done so. > > Anyone care to share, and please don't take this the wrong way, but > in layman's terms, their experiences and how they handle it all > financially? > > Also, I know that there are monthly meetings for ASGC, but I am > unable to attend any of those since they are on Wednesday's before > my husband gets home from work and we wouldn't be able to get a > sitter to attend anyway. I am able to get a sitter on the weekend > and have a place to meet in Brook Park that would not cost a thing > to anyone. Would anyone be interested in meeting on say a Sunday > afternoon for group discussions? I'll even provide the coffee! LOL > > I've also posted pictures of my kids in the photos section, what a > great idea! (Btw.. Shane your son is absolutely precious!!) > > Thanks in advance.. and hope that no one minds me making this > post..Sorry it ended up being so long!! Guess when I start rambling > it is hard to get me to shut up.. LOL.. ok.. shutting up now! > > Hope everyone has a great day and gets to enjoy the sunshine! > > J > Olmsted Falls > Proud Mom of igh, 5 and Kiernan 4 > > > > > > > > > *note: > When Adding to your email address book, don't forget to include the s in groups. Here is the complete address: > ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ > is a networking and support group > of " Parent to Parent for Autism " . > Website: http://hometown.aol.com/parentschat/homepage.html > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 Yes, very expensive. What is the Autism Scholarship? Do they have to be dx'd with Autism? Welcome, , hoping you find lots of answers and support here, good place. ----- Original Message ----- From: Deborah Kadansky Sent: Tuesday, May 23, 2006 10:59 AM Subject: Re: [ ] Questions.. , Yes, it is very hard finacially and emotionally. Have you thoughT about the Autism Scholarship for your son? We started using this in January of 2006 and we LOVE it!!!!! FWIW, I grew up in Olmsted Falls. Debbie"If you want to know.. Ask!" <mystique2574@...> wrote: I have seen a lot of differnt figures flying around lately and am wondering.. how you all do it??Just before we started the process of buying a new home.. our son's testing, misdiagnosis and diagnosis drained our savings. We are renting a home at this time.. and barely making it paycheck to paycheck. Many weeks we are robbing peter to pay paul so to speak. I have been a stay at home mom since my daughter was born since she was a preemie and could not be put in daycare the first year of her life.. I attempted to go back to work a few times now.. losing my last 2 jobs to either caregivers that called to frequently for me to come get my son because they couldn't handle him or me calling off because I either did not have a caregiver or my son had therapy or doctor's appointments that required me to be there. My son was first diagnosed as being hearing impaired in both ears.. which I knew couldn't be the case since he could be upstairs and we could have the tv on the lowest volume but if Dora or came on and the theme song was playing he'd come running. We got a second opinion and soon followed up with a neurologist who gave us the diagnosis of ASD w/ADD. We were with the help me grow program but most of the help was geared towards the hearing impairment and we got the new diagnosis just 3 months before he got transferred out of help me grow and into the school district.. so everything we have done has pretty much been trial and error on my part. My son currently takes risperdal 2 mg a day.. and sees speech and occupational therapists as well as a child psychologist. He attends 2 preschools, our school districts as well as a private one in Middleburg Hts that we pay for because we weren't sure how the transition into the school district would be and he was already comfortable at MEEC. I've heard alot about ABA, Bio-medical, gfcf diets, supplements and tons of other things that I'm not familiar with and am not sure if we should try with my son. We did try the gfcf thing and he refused to eat any of the new foods whatsoever not to mention it was killing my entire food budget for 4 in just one trip to get his groceries. I have thought about taking him to Osteomed or Dr Demio.. but the fact that I know up front our Insurance won't pay a cent and we don't have the extra to put out for it is the main reason that we haven't done so. Anyone care to share, and please don't take this the wrong way, but in layman's terms, their experiences and how they handle it all financially? Also, I know that there are monthly meetings for ASGC, but I am unable to attend any of those since they are on Wednesday's before my husband gets home from work and we wouldn't be able to get a sitter to attend anyway. I am able to get a sitter on the weekend and have a place to meet in Brook Park that would not cost a thing to anyone. Would anyone be interested in meeting on say a Sunday afternoon for group discussions? I'll even provide the coffee! LOLI've also posted pictures of my kids in the photos section, what a great idea! (Btw.. Shane your son is absolutely precious!!) Thanks in advance.. and hope that no one minds me making this post..Sorry it ended up being so long!! Guess when I start rambling it is hard to get me to shut up.. LOL.. ok.. shutting up now!Hope everyone has a great day and gets to enjoy the sunshine! JOlmsted FallsProud Mom of igh, 5 and Kiernan 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 , Thanks for the welcome.. so many 's I don't think I'll be able to keep any of you straight.. lol.. we need to come up with nicknames for all of you. I can relate though.. was 1 of 6 's in elementary school. The Scholarship is through the state department of education. You can choose to send your child to programs outside of your school district.. charter and private schools.. and yes.. they have to have a diagnosis of Autism. There is more info about 1/2 way down the page here: http://www.ode.state.oh.us/exceptional_children/children_with_disabil ities/default.asp Hope that helps! J > I have seen a lot of differnt figures flying around lately and am > wondering.. how you all do it?? > > Just before we started the process of buying a new home.. our son's > testing, misdiagnosis and diagnosis drained our savings. We are > renting a home at this time.. and barely making it paycheck to > paycheck. Many weeks we are robbing peter to pay paul so to speak. > I have been a stay at home mom since my daughter was born since she > was a preemie and could not be put in daycare the first year of her > life.. I attempted to go back to work a few times now.. losing my > last 2 jobs to either caregivers that called to frequently for me to > come get my son because they couldn't handle him or me calling off > because I either did not have a caregiver or my son had therapy or > doctor's appointments that required me to be there. > > My son was first diagnosed as being hearing impaired in both ears.. > which I knew couldn't be the case since he could be upstairs and we > could have the tv on the lowest volume but if Dora or came on > and the theme song was playing he'd come running. We got a second > opinion and soon followed up with a neurologist who gave us the > diagnosis of ASD w/ADD. We were with the help me grow program but > most of the help was geared towards the hearing impairment and we > got the new diagnosis just 3 months before he got transferred out of > help me grow and into the school district.. so everything we have > done has pretty much been trial and error on my part. My son > currently takes risperdal 2 mg a day.. and sees speech and > occupational therapists as well as a child psychologist. He attends > 2 preschools, our school districts as well as a private one in > Middleburg Hts that we pay for because we weren't sure how the > transition into the school district would be and he was already > comfortable at MEEC. > > I've heard alot about ABA, Bio-medical, gfcf diets, supplements and > tons of other things that I'm not familiar with and am not sure if > we should try with my son. We did try the gfcf thing and he refused > to eat any of the new foods whatsoever not to mention it was killing > my entire food budget for 4 in just one trip to get his groceries. > I have thought about taking him to Osteomed or Dr Demio.. but the > fact that I know up front our Insurance won't pay a cent and we > don't have the extra to put out for it is the main reason that we > haven't done so. > > Anyone care to share, and please don't take this the wrong way, but > in layman's terms, their experiences and how they handle it all > financially? > > Also, I know that there are monthly meetings for ASGC, but I am > unable to attend any of those since they are on Wednesday's before > my husband gets home from work and we wouldn't be able to get a > sitter to attend anyway. I am able to get a sitter on the weekend > and have a place to meet in Brook Park that would not cost a thing > to anyone. Would anyone be interested in meeting on say a Sunday > afternoon for group discussions? I'll even provide the coffee! LOL > > I've also posted pictures of my kids in the photos section, what a > great idea! (Btw.. Shane your son is absolutely precious!!) > > Thanks in advance.. and hope that no one minds me making this > post..Sorry it ended up being so long!! Guess when I start rambling > it is hard to get me to shut up.. LOL.. ok.. shutting up now! > > Hope everyone has a great day and gets to enjoy the sunshine! > > J > Olmsted Falls > Proud Mom of igh, 5 and Kiernan 4 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 Any therapy can be financially draining. I have been blessed with being able to work so that we can pay for our children's therapies. With my husband and I both working, we have been able to make it (sometimes only barely). We have also been blessed in finding great care givers for our children. Although a difficult process, you may qualify for some financial assistance through a waiver program. There are long wait lists for waiver programs; however, it may be worth a shot. You can contact your MR/DD person for more information. I would be willing to meet you for coffee anytime. I live in North Olmsted so its not so far from Olmsted Falls. I know a few moms in the area that may also be willing to meet. There is also a great woman's group in Westlake that meets once a month. Hang in there. Debbie > > I have seen a lot of differnt figures flying around lately and am > wondering.. how you all do it?? > > Just before we started the process of buying a new home.. our son's > testing, misdiagnosis and diagnosis drained our savings. We are > renting a home at this time.. and barely making it paycheck to > paycheck. Many weeks we are robbing peter to pay paul so to speak. > I have been a stay at home mom since my daughter was born since she > was a preemie and could not be put in daycare the first year of her > life.. I attempted to go back to work a few times now.. losing my > last 2 jobs to either caregivers that called to frequently for me to > come get my son because they couldn't handle him or me calling off > because I either did not have a caregiver or my son had therapy or > doctor's appointments that required me to be there. > > My son was first diagnosed as being hearing impaired in both ears.. > which I knew couldn't be the case since he could be upstairs and we > could have the tv on the lowest volume but if Dora or came on > and the theme song was playing he'd come running. We got a second > opinion and soon followed up with a neurologist who gave us the > diagnosis of ASD w/ADD. We were with the help me grow program but > most of the help was geared towards the hearing impairment and we > got the new diagnosis just 3 months before he got transferred out of > help me grow and into the school district.. so everything we have > done has pretty much been trial and error on my part. My son > currently takes risperdal 2 mg a day.. and sees speech and > occupational therapists as well as a child psychologist. He attends > 2 preschools, our school districts as well as a private one in > Middleburg Hts that we pay for because we weren't sure how the > transition into the school district would be and he was already > comfortable at MEEC. > > I've heard alot about ABA, Bio-medical, gfcf diets, supplements and > tons of other things that I'm not familiar with and am not sure if > we should try with my son. We did try the gfcf thing and he refused > to eat any of the new foods whatsoever not to mention it was killing > my entire food budget for 4 in just one trip to get his groceries. > I have thought about taking him to Osteomed or Dr Demio.. but the > fact that I know up front our Insurance won't pay a cent and we > don't have the extra to put out for it is the main reason that we > haven't done so. > > Anyone care to share, and please don't take this the wrong way, but > in layman's terms, their experiences and how they handle it all > financially? > > Also, I know that there are monthly meetings for ASGC, but I am > unable to attend any of those since they are on Wednesday's before > my husband gets home from work and we wouldn't be able to get a > sitter to attend anyway. I am able to get a sitter on the weekend > and have a place to meet in Brook Park that would not cost a thing > to anyone. Would anyone be interested in meeting on say a Sunday > afternoon for group discussions? I'll even provide the coffee! LOL > > I've also posted pictures of my kids in the photos section, what a > great idea! (Btw.. Shane your son is absolutely precious!!) > > Thanks in advance.. and hope that no one minds me making this > post..Sorry it ended up being so long!! Guess when I start rambling > it is hard to get me to shut up.. LOL.. ok.. shutting up now! > > Hope everyone has a great day and gets to enjoy the sunshine! > > J > Olmsted Falls > Proud Mom of igh, 5 and Kiernan 4 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 I like the question with the qualifier, " in layman's terms " . Answer: my dh (designated hitter?)...and our ds(data systems?)...and then there's the ST(sensory therapy or maybe...)...and you can go to the MR/DD and ask for x,y, & z; they're usually pdq...I was going to ask for ESY but I have ESP and know I was SOL...just having a little fun.lol. SMDS > > > In a message dated 5/23/2006 10:23:00 AM Eastern Standard Time, > mystique2574@... writes: > > Anyone care to share, and please don't take this the wrong way, but > in layman's terms, their experiences and how they handle it all > financially? > > > > We went into a lot of debt in getting my son an appropriate program. My dh > worked 2 1/2 jobs and I stayed home working with our son plus the other kids > and oh yes, had a baby too. lol. Our furniture is scruffy, our fridge > should be buried without honors, we have a kitchen table but no chairs yet (don't > ask) and we all are in big need of clothing and other fun things. So we are > just recovering from all the cost to get his program going. I guess our > answer was to do without or do more with less and dh work more. > > I also think finding ways you can do as much as you can yourself is a good > idea. Watch your ds get his speech therapy and try less therapy with more > practicing at home with you doing the same activities. I know we did that with > our ds when we could no longer afford any ST and couldn't find any help > anywhere for more. He was between the B-3 program and school that long summer. > So he got ST 2 times/month while we did whatever we could at home to help make > it up. > > Tap into resources if possible. Get in the MR/DD, if you aren't, and get a > casemanager. They " should " be able to help you find funding for your needs > if it is out there. You might get help paying for some therapy that way. > Push hard to get the school to do as much as possible as well. > > There is going to be a new funding source for summer services to keep in > mind for ESY next year. I am in a group that raises money for ESY that schools > won't give you. We handed out probably $6,000 in money this past spring. I > don't know yet how many people were helped. But when the application is > available again next spring, I will definitely post it and let people know. > > > Roxanna ô¿ô > Don't take life too seriously; No one gets out alive. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 LOL.. now that is too funny.. but kinda the truth as to what I was getting at... there are so many code names and terms that some of us newbies just don't get.... that and ya might know the medical terminology for some things.. but not everyone may understand what you are saying unless they are familiar with it... I know when I was in the work force I used to help write manuals for policies and procedures for corporations.. fun fun i know... our rule of thumb.. is always word it at about a 3rd grade level so that everyone can understand it and benefit from it. just my 2cents.. J Olmsted Falls > > > > > > In a message dated 5/23/2006 10:23:00 AM Eastern Standard Time, > > mystique2574@ writes: > > > > Anyone care to share, and please don't take this the wrong way, > but > > in layman's terms, their experiences and how they handle it all > > financially? > > > > > > > > We went into a lot of debt in getting my son an appropriate > program. My dh > > worked 2 1/2 jobs and I stayed home working with our son plus the > other kids > > and oh yes, had a baby too. lol. Our furniture is scruffy, our > fridge > > should be buried without honors, we have a kitchen table but no > chairs yet (don't > > ask) and we all are in big need of clothing and other fun > things. So we are > > just recovering from all the cost to get his program going. I > guess our > > answer was to do without or do more with less and dh work more. > > > > I also think finding ways you can do as much as you can yourself > is a good > > idea. Watch your ds get his speech therapy and try less therapy > with more > > practicing at home with you doing the same activities. I know we > did that with > > our ds when we could no longer afford any ST and couldn't find any > help > > anywhere for more. He was between the B-3 program and school that > long summer. > > So he got ST 2 times/month while we did whatever we could at home > to help make > > it up. > > > > Tap into resources if possible. Get in the MR/DD, if you aren't, > and get a > > casemanager. They " should " be able to help you find funding for > your needs > > if it is out there. You might get help paying for some therapy > that way. > > Push hard to get the school to do as much as possible as well. > > > > There is going to be a new funding source for summer services to > keep in > > mind for ESY next year. I am in a group that raises money for ESY > that schools > > won't give you. We handed out probably $6,000 in money this past > spring. I > > don't know yet how many people were helped. But when the > application is > > available again next spring, I will definitely post it and let > people know. > > > > > > Roxanna ô¿ô > > Don't take life too seriously; No one gets out alive. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 I, Shane, will use the full terminology on my first usage of a moniker or acronym...so help me. I feel better, maybe I'll start a trend. Example: When your child is getting their first IEP (Individual Education Plan/Program) they will first have an MFE (Multi-factored Evaluation) which will be included in some way in the IEP and will probably and should be explained to you in an ETR (Evaluation Team Report) by the applicable member of from the original MFE. Have them check off evaluate for ESY (Extended School Year [services]) so if your child needs ESY the very first summer they have already evaluated for regression and recoupment. [Note: never be afraid to ask what a term means. Even if you know what regression and recoupment means in english you might not know how it is applied in schools or LEA (Local Education Agency) under the IDEA/IDEIA '04 (Idividuals with Disabilities Act/Individuals with Disabilities Improvement Act 2004). While this might be a little more teadious, I will strive not to add to anyones already stressful life by making you wonder WTF I'm talking about (I won't spell out WTF-What the !$#%!) SMDS (Shane Drummond ) > > > > > > > > > In a message dated 5/23/2006 10:23:00 AM Eastern Standard Time, > > > mystique2574@ writes: > > > > > > Anyone care to share, and please don't take this the wrong way, > > but > > > in layman's terms, their experiences and how they handle it all > > > financially? > > > > > > > > > > > > We went into a lot of debt in getting my son an appropriate > > program. My dh > > > worked 2 1/2 jobs and I stayed home working with our son plus > the > > other kids > > > and oh yes, had a baby too. lol. Our furniture is scruffy, > our > > fridge > > > should be buried without honors, we have a kitchen table but no > > chairs yet (don't > > > ask) and we all are in big need of clothing and other fun > > things. So we are > > > just recovering from all the cost to get his program going. I > > guess our > > > answer was to do without or do more with less and dh work more. > > > > > > I also think finding ways you can do as much as you can yourself > > is a good > > > idea. Watch your ds get his speech therapy and try less therapy > > with more > > > practicing at home with you doing the same activities. I know > we > > did that with > > > our ds when we could no longer afford any ST and couldn't find > any > > help > > > anywhere for more. He was between the B-3 program and school > that > > long summer. > > > So he got ST 2 times/month while we did whatever we could at > home > > to help make > > > it up. > > > > > > Tap into resources if possible. Get in the MR/DD, if you > aren't, > > and get a > > > casemanager. They " should " be able to help you find funding for > > your needs > > > if it is out there. You might get help paying for some therapy > > that way. > > > Push hard to get the school to do as much as possible as well. > > > > > > There is going to be a new funding source for summer services to > > keep in > > > mind for ESY next year. I am in a group that raises money for > ESY > > that schools > > > won't give you. We handed out probably $6,000 in money this > past > > spring. I > > > don't know yet how many people were helped. But when the > > application is > > > available again next spring, I will definitely post it and let > > people know. > > > > > > > > > Roxanna ô¿ô > > > Don't take life too seriously; No one gets out alive. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 LOL.....the alphabit soup word game! I have foun dmyself guilty of this when Bob & I talk. He sometimes has to remind me that I have had 13 yrs. of learning this, and he is just learning the game.Becky Mother to , 15, Autism, Epilepsy, Cerebal Palsy, Severe MR Everybody has barriers and obstacles. If you look at them as containing fences that don't allow you to advance, then you're going to be a failure. If you look at them as hurdles that strengthen you each time you go over one, then you're going to be a success. Carson Surgeon Sneak preview the all-new .com. It's not radically different. Just radically better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 Forget GFCF/ use enzymes. We dumped the diet and used enzymes instead. We have been chelating since last September and now we don't need the enzymes either. You don't HAVE to have a doctor to do any of the protocols. We have done it all with out one. Of course it's always better to have a professional if you can afford one, but if you can't; don't do nothing. Check out this site to get started. It's what I used and it is the most comprehensive I have found. It's done by a parent like us who is poor but determined to help her kid! www.danasview.net ----- Original Message ----- From: If you want to know.. Ask! Sent: 5/23/2006 10:22:35 AM Subject: [ ] Questions.. I have seen a lot of differnt figures flying around lately and am wondering.. how you all do it??Just before we started the process of buying a new home.. our son's testing, misdiagnosis and diagnosis drained our savings. We are renting a home at this time.. and barely making it paycheck to paycheck. Many weeks we are robbing peter to pay paul so to speak. I have been a stay at home mom since my daughter was born since she was a preemie and could not be put in daycare the first year of her life.. I attempted to go back to work a few times now.. losing my last 2 jobs to either caregivers that called to frequently for me to come get my son because they couldn't handle him or me calling off because I either did not have a caregiver or my son had therapy or doctor's appointments that required me to be there. My son was first diagnosed as being hearing impaired in both ears.. which I knew couldn't be the case since he could be upstairs and we could have the tv on the lowest volume but if Dora or came on and the theme song was playing he'd come running. We got a second opinion and soon followed up with a neurologist who gave us the diagnosis of ASD w/ADD. We were with the help me grow program but most of the help was geared towards the hearing impairment and we got the new diagnosis just 3 months before he got transferred out of help me grow and into the school district.. so everything we have done has pretty much been trial and error on my part. My son currently takes risperdal 2 mg a day.. and sees speech and occupational therapists as well as a child psychologist. He attends 2 preschools, our school districts as well as a private one in Middleburg Hts that we pay for because we weren't sure how the transition into the school district would be and he was already comfortable at MEEC. I've heard alot about ABA, Bio-medical, gfcf diets, supplements and tons of other things that I'm not familiar with and am not sure if we should try with my son. We did try the gfcf thing and he refused to eat any of the new foods whatsoever not to mention it was killing my entire food budget for 4 in just one trip to get his groceries. I have thought about taking him to Osteomed or Dr Demio.. but the fact that I know up front our Insurance won't pay a cent and we don't have the extra to put out for it is the main reason that we haven't done so. Anyone care to share, and please don't take this the wrong way, but in layman's terms, their experiences and how they handle it all financially? Also, I know that there are monthly meetings for ASGC, but I am unable to attend any of those since they are on Wednesday's before my husband gets home from work and we wouldn't be able to get a sitter to attend anyway. I am able to get a sitter on the weekend and have a place to meet in Brook Park that would not cost a thing to anyone. Would anyone be interested in meeting on say a Sunday afternoon for group discussions? I'll even provide the coffee! LOLI've also posted pictures of my kids in the photos section, what a great idea! (Btw.. Shane your son is absolutely precious!!) Thanks in advance.. and hope that no one minds me making this post..Sorry it ended up being so long!! Guess when I start rambling it is hard to get me to shut up.. LOL.. ok.. shutting up now!Hope everyone has a great day and gets to enjoy the sunshine! JOlmsted FallsProud Mom of igh, 5 and Kiernan 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 Is there a particular area of the site you recommend? Not real saavy with site maps... --- In , " rmaher1969@... " <rmaher1969@...> wrote: > > Forget GFCF/ use enzymes. We dumped the diet and used enzymes instead. We have been chelating since last September and now we don't need the enzymes either. You don't HAVE to have a doctor to do any of the protocols. We have done it all with out one. Of course it's always better to have a professional if you can afford one, but if you can't; don't do nothing. Check out this site to get started. It's what I used and it is the most comprehensive I have found. It's done by a parent like us who is poor but determined to help her kid! www.danasview.net > > > > > ----- Original Message ----- > From: If you want to know.. Ask! > > Sent: 5/23/2006 10:22:35 AM > Subject: [ ] Questions.. > > > I have seen a lot of differnt figures flying around lately and am > wondering.. how you all do it?? > > Just before we started the process of buying a new home.. our son's > testing, misdiagnosis and diagnosis drained our savings. We are > renting a home at this time.. and barely making it paycheck to > paycheck. Many weeks we are robbing peter to pay paul so to speak. > I have been a stay at home mom since my daughter was born since she > was a preemie and could not be put in daycare the first year of her > life.. I attempted to go back to work a few times now.. losing my > last 2 jobs to either caregivers that called to frequently for me to > come get my son because they couldn't handle him or me calling off > because I either did not have a caregiver or my son had therapy or > doctor's appointments that required me to be there. > > My son was first diagnosed as being hearing impaired in both ears.. > which I knew couldn't be the case since he could be upstairs and we > could have the tv on the lowest volume but if Dora or came on > and the theme song was playing he'd come running. We got a second > opinion and soon followed up with a neurologist who gave us the > diagnosis of ASD w/ADD. We were with the help me grow program but > most of the help was geared towards the hearing impairment and we > got the new diagnosis just 3 months before he got transferred out of > help me grow and into the school district.. so everything we have > done has pretty much been trial and error on my part. My son > currently takes risperdal 2 mg a day.. and sees speech and > occupational therapists as well as a child psychologist. He attends > 2 preschools, our school districts as well as a private one in > Middleburg Hts that we pay for because we weren't sure how the > transition into the school district would be and he was already > comfortable at MEEC. > > I've heard alot about ABA, Bio-medical, gfcf diets, supplements and > tons of other things that I'm not familiar with and am not sure if > we should try with my son. We did try the gfcf thing and he refused > to eat any of the new foods whatsoever not to mention it was killing > my entire food budget for 4 in just one trip to get his groceries. > I have thought about taking him to Osteomed or Dr Demio.. but the > fact that I know up front our Insurance won't pay a cent and we > don't have the extra to put out for it is the main reason that we > haven't done so. > > Anyone care to share, and please don't take this the wrong way, but > in layman's terms, their experiences and how they handle it all > financially? > > Also, I know that there are monthly meetings for ASGC, but I am > unable to attend any of those since they are on Wednesday's before > my husband gets home from work and we wouldn't be able to get a > sitter to attend anyway. I am able to get a sitter on the weekend > and have a place to meet in Brook Park that would not cost a thing > to anyone. Would anyone be interested in meeting on say a Sunday > afternoon for group discussions? I'll even provide the coffee! LOL > > I've also posted pictures of my kids in the photos section, what a > great idea! (Btw.. Shane your son is absolutely precious!!) > > Thanks in advance.. and hope that no one minds me making this > post..Sorry it ended up being so long!! Guess when I start rambling > it is hard to get me to shut up.. LOL.. ok.. shutting up now! > > Hope everyone has a great day and gets to enjoy the sunshine! > > J > Olmsted Falls > Proud Mom of igh, 5 and Kiernan 4 > > > > > > > > > *note: > When Adding to your email address book, don't forget to include the s in groups. Here is the complete address: > ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ > is a networking and support group > of " Parent to Parent for Autism " . > Website: http://hometown.aol.com/parentschat/homepage.html > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 If you go to the main page of the site, there is a search bar. Type in what you want to search. Or, if you go to http://www.danasview.net/parentin.htm This is the Parent info page. She has much more than just bio-med on there. I haven't read it all yet, but I refer to her site often for answers. ----- Original Message ----- From: smdscott141 Sent: 5/23/2006 10:24:44 PM Subject: [ ] Re: Questions.. Is there a particular area of the site you recommend? Not real saavy with site maps...>> Forget GFCF/ use enzymes. We dumped the diet and used enzymes instead. We have been chelating since last September and now we don't need the enzymes either. You don't HAVE to have a doctor to do any of the protocols. We have done it all with out one. Of course it's always better to have a professional if you can afford one, but if you can't; don't do nothing. Check out this site to get started. It's what I used and it is the most comprehensive I have found. It's done by a parent like us who is poor but determined to help her kid! www.danasview.net> > > > > ----- Original Message ----- > From: If you want to know.. Ask! > > Sent: 5/23/2006 10:22:35 AM > Subject: [ ] Questions..> > > I have seen a lot of differnt figures flying around lately and am > wondering.. how you all do it??> > Just before we started the process of buying a new home.. our son's > testing, misdiagnosis and diagnosis drained our savings. We are > renting a home at this time.. and barely making it paycheck to > paycheck. Many weeks we are robbing peter to pay paul so to speak. > I have been a stay at home mom since my daughter was born since she > was a preemie and could not be put in daycare the first year of her > life.. I attempted to go back to work a few times now.. losing my > last 2 jobs to either caregivers that called to frequently for me to > come get my son because they couldn't handle him or me calling off > because I either did not have a caregiver or my son had therapy or > doctor's appointments that required me to be there. > > My son was first diagnosed as being hearing impaired in both ears.. > which I knew couldn't be the case since he could be upstairs and we > could have the tv on the lowest volume but if Dora or came on > and the theme song was playing he'd come running. We got a second > opinion and soon followed up with a neurologist who gave us the > diagnosis of ASD w/ADD. We were with the help me grow program but > most of the help was geared towards the hearing impairment and we > got the new diagnosis just 3 months before he got transferred out of > help me grow and into the school district.. so everything we have > done has pretty much been trial and error on my part. My son > currently takes risperdal 2 mg a day.. and sees speech and > occupational therapists as well as a child psychologist. He attends > 2 preschools, our school districts as well as a private one in > Middleburg Hts that we pay for because we weren't sure how the > transition into the school district would be and he was already > comfortable at MEEC. > > I've heard alot about ABA, Bio-medical, gfcf diets, supplements and > tons of other things that I'm not familiar with and am not sure if > we should try with my son. We did try the gfcf thing and he refused > to eat any of the new foods whatsoever not to mention it was killing > my entire food budget for 4 in just one trip to get his groceries. > I have thought about taking him to Osteomed or Dr Demio.. but the > fact that I know up front our Insurance won't pay a cent and we > don't have the extra to put out for it is the main reason that we > haven't done so. > > Anyone care to share, and please don't take this the wrong way, but > in layman's terms, their experiences and how they handle it all > financially? > > Also, I know that there are monthly meetings for ASGC, but I am > unable to attend any of those since they are on Wednesday's before > my husband gets home from work and we wouldn't be able to get a > sitter to attend anyway. I am able to get a sitter on the weekend > and have a place to meet in Brook Park that would not cost a thing > to anyone. Would anyone be interested in meeting on say a Sunday > afternoon for group discussions? I'll even provide the coffee! LOL> > I've also posted pictures of my kids in the photos section, what a > great idea! (Btw.. Shane your son is absolutely precious!!) > > Thanks in advance.. and hope that no one minds me making this > post..Sorry it ended up being so long!! Guess when I start rambling > it is hard to get me to shut up.. LOL.. ok.. shutting up now!> > Hope everyone has a great day and gets to enjoy the sunshine!> > J> Olmsted Falls> Proud Mom of igh, 5 and Kiernan 4> > > > > > > > > *note:> When Adding to your email address book, don't forget to include the s in groups. Here is the complete address: > ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~> is a networking and support group> of "Parent to Parent for Autism".> Website: http://hometown.aol.com/parentschat/homepage.html > > > > Quote Link to comment Share on other sites More sharing options...
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