Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 unsubscribeonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Hi Larry, We are also in the Chicagoland area, just across the border in Indiana. amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 , The MDA clinic I'm going to is at Hinsdale Hospital, which isn't to far from joliet where I live. The number to call 630-856-7900. If you call right away, they may be able to get your son in on Feb. 16, which is the third Wed. of the month. Every other month they see children and the opposite months they see adults. Hope you get in for Feb. and more importantly have some good results. In case you are interested, I thought it might be a good idea to get together with other CMTers in the area just to talk in person. I talked with Amy (Hey Amy, are you reading this!) who is also from northern Indiana and that's when I got the idea. Are you interested? Also anyone else within earshot! E_mail me at LMinella@... Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Hello Larry, here, You say you are in the Chicago area can you tell me where the MDA is where you are going? My daughter lives in Portage Ind and needs to take my Grandson. The Doctor we have at the present has him on zarontin for siezures and he has been on this for almost 2 yrs. She wants to take him off but Dr. doesnt't want to. He has CMT1A and had a focal siezure 1 time and never since but we need other medical opinions on this plus my grandson was put back a grade not so much due to his intellctual ability he is a very smart child, but for being (school says) slow as far as his physical condition(hopping,skipping, hand coordination ability to tie his shoes things in this respect). I personally feel they held him back a grade by discriminating against him. They gave my daughter a hard time about this when she argued with them about it. It was THEIR WAY or NO WAY. She told them about the CMT but they just don't seem to care. We are in Indiana and the School system needs to definatly become more educated here about CMT. I am 46 yrs old and had one heck of a time in school and I don't want to see my grandson go through what I did. Cat CSCluv** http://community.webtv.net/cat926/doc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 Hey Amy, we are in Indian also, how many other Hoosiers do we have on the list. I asked awhile back if any one had experience with the department education and rehabilitation services, well I do now and what a smart move it was to contact them I must say, it looks as though I will be going back to college in the spring/summer for engineering degree, I recommend them to anyone who needs retaining TONY -----Original Message----- From: Amy <amy913@...> onelist <onelist> Cc: onelist <onelist> Date: Friday, February 11, 2000 7:21 AM Subject: Re: [] Digest Number 158 >From: amy913@... (Amy) > >Hi Larry, >We are also in the Chicagoland area, just across the border in Indiana. > > >amy > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 HI , not sure where Portage is, but we live in Warsaw and I go to the MD clinic in Fort Wayne, they are great, there must be a MDA clinic around you also, TONY -----Original Message----- From: cathy Culp <cat926@...> onelist <onelist> Date: Friday, February 11, 2000 11:16 AM Subject: Re: [] Digest Number 158 >From: cat926@... (cathy Culp) > >Hello Larry, > here, You say you are in the Chicago area can you tell me where >the MDA is where you are going? My daughter lives in Portage Ind and >needs to take my Grandson. The Doctor we have at the present has him on >zarontin for siezures and he has been on this for almost 2 yrs. She >wants to take him off but Dr. doesnt't want to. He has CMT1A and had a >focal siezure 1 time and never since but we need other medical opinions >on this plus my grandson was put back a grade not so much due to his >intellctual ability he is a very smart child, but for being (school >says) slow as far as his physical condition(hopping,skipping, >hand coordination ability to tie his shoes things in this respect). I >personally feel they held him back a grade by discriminating against >him. They gave my daughter a hard time about this when she argued with >them about it. It was THEIR WAY or NO WAY. She told them about the CMT >but they just don't seem to care. We are in Indiana and the School >system needs to definatly become more educated here about CMT. I am 46 >yrs old and had one heck of a time in school and I don't want to see my >grandson go through what I did. >Cat > > > > CSCluv** > > > >http://community.webtv.net/cat926/doc > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 Tami, that is so great about both your children--your daughter's achievements and your son's good progress in a difficult area. They are so lucky to have a wonderful mother like you. Christi, that affirmation site is wonderful! I put it into my favorites folder. Jet, very interesting technique at your site. I like it alot. Bonnie, I see what you mean about my homepage address. It's actually set up as a hyperlink in my signature line, but I guess that it doesn't come through that way once my post goes through egroups. Dawn G.--Massachusetts From a house on a hill a sacred light shines. I walk through these rooms but none of them are mine. Down empty hallways I went from door to door. Searching for my beautiful reward. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Dawn, Thanks for the iHello site ;-) God bless, Bonnie **********************************************With God, ALL things are possible.********************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 Kayte: Maybe it's a sensory issue?? Too much noise and too loud noises, too much going on at one time, they get " sensory overload " .....I just don't understand it..... does well ONLY if he can have the " run " of the place!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 In a message dated 5/8/00 12:22:57 PM Pacific Daylight Time, egroups writes: << avid, my two yo, is saying " don't cry mommy " , " why cry mommy " and then " I cry too! " >> How cute!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 In a message dated 5/8/00 12:22:57 PM Pacific Daylight Time, egroups writes: << .can't see or hear me....lucky people! >> LMAO....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 In a message dated 5/8/00 12:22:57 PM Pacific Daylight Time, egroups writes: << Although it did help her to focus, we found out later that it had been making her behavior problems worse. >> You know, I've thought about that too, but on the weekends, I don't give the Adderral and the behavior is the same, but that 's not really a good gauge, unless we totally take him off of that.....but then, we still would have to put him on something for " focusing " , wouldn't we?? At first, the Clonidine and Adderral made for a good combo, but it only worked a few weeks when the blood levels kicked in....every med we've tried for , including Ritalin, seemed to be a magic wand at first, but then the behaviors got worse again......it seems he builds up a tolerance after awhile..... Thanks again for the suggestions, believe me, we're looking into everything! :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 In a message dated 5/8/00 12:22:57 PM Pacific Daylight Time, egroups writes: << We are buying it for about 1500 dollars, >> This is another thing that my MRLA service is supposed to provide for....my ins. co. turned it down as not being " medically necessary " although " necessary " , if that makes sense! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 In a message dated 5/8/00 12:22:57 PM Pacific Daylight Time, egroups writes: << THESE ARE VERY DIFFERENT FROM THE TECHNOLOGY used by nursing homes and prisons. >> How so, Sara? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 Hey GUYS____Please put subjects in the subject line - hard to catalog digest numbers!!! :~) Sara >>> Ltb3105@... - 05/08/0 6:22 PM >>> In a message dated 5/8/00 12:22:57 PM Pacific Daylight Time, egroups writes: << avid, my two yo, is saying " don't cry mommy " , " why cry mommy " and then " I cry too! " >> How cute!!!!!!!! ------------------------------------------------------------------------ Join Garden.com's affiliate program and enjoy numerous benefits. To learn more click here: 1/2955/10/_/691668/_/957824544/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 The good thing about Ritilin and Adderal, dexadrine, etc is that they last such a short time ones body rids itself of them quickly. Have any of you tried CYLERT? IT takes longer to work and then takes longer to get rid of. Didn't notice any blood pressure change, but unlike Risperdal, on Cylert Elie LOST weight. Of course it did nothing for his behavior either. To be very honest - the best thing for my son has been sleep at night and consistant BM> That's why we have TSS services because BM is exhausting day in and day out. One is always conscious of what is said and how it is fphrased and what the consequences will be as far out as possible.\ Sara >>> Ltb3105@... - 05/08/0 6:28 PM >>> In a message dated 5/8/00 12:22:57 PM Pacific Daylight Time, egroups writes: << Although it did help her to focus, we found out later that it had been making her behavior problems worse. >> You know, I've thought about that too, but on the weekends, I don't give the Adderral and the behavior is the same, but that 's not really a good gauge, unless we totally take him off of that.....but then, we still would have to put him on something for " focusing " , wouldn't we?? At first, the Clonidine and Adderral made for a good combo, but it only worked a few weeks when the blood levels kicked in....every med we've tried for , including Ritalin, seemed to be a magic wand at first, but then the behaviors got worse again......it seems he builds up a tolerance after awhile..... Thanks again for the suggestions, believe me, we're looking into everything! :-) ------------------------------------------------------------------------ How about a flat, no-fee long distance rate of 6.7¢ per min. - or less? Join beMANY! Our huge buying group gives you rates which fall monthly, plus an extra $60 in FREE calls! 1/3820/10/_/691668/_/957824940/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 But will be medically vital after your child is hit by a car or run over by a raging bull!! And managed care is better for all of us!! Sara >>> Ltb3105@... - 05/08/0 6:30 PM >>> In a message dated 5/8/00 12:22:57 PM Pacific Daylight Time, egroups writes: << We are buying it for about 1500 dollars, >> This is another thing that my MRLA service is supposed to provide for....my ins. co. turned it down as not being " medically necessary " although " necessary " , if that makes sense! ------------------------------------------------------------------------ Save up to 54% on Quest & Kelty tents, backpacks, sleeping bags and outdoor gear. FREE Shipping and a 30 Day Money-Back Guarantee at screaminghotdeals.com 1/4012/10/_/691668/_/957825063/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 Those items which I checked first - thinking low tech has to be less expensive are very like the dog monitors that are used. One must establish a field - usually a door sensor that reacts when the wrist or ankle passes through the field. Not portable and once ouside the initial ring or buzz- no direction. Both Care Trak and Wander Care allow you to actually track the person.. Sara >>> Ltb3105@... - 05/08/0 6:31 PM >>> In a message dated 5/8/00 12:22:57 PM Pacific Daylight Time, egroups writes: << THESE ARE VERY DIFFERENT FROM THE TECHNOLOGY used by nursing homes and prisons. >> How so, Sara? ------------------------------------------------------------------------ Would you like to save big on your phone bill -- and keep on saving more each month? Join beMANY! Our huge buying group gives you Long Distance rates which fall monthly, plus an extra $60 in FREE calls! 1/2567/10/_/691668/_/957825098/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 Hi To All, Just a little tip I found out, let the shot get a little warm after taking it out of the frig, about 10- 15 minutes, you won't believe the difference. Let the alcohol prep be completely dry before doing your shot. Let me know if it helped. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 The question about treatment versus age and menopause, or perimenopause is very difficult to accurately diagnose. The medications can cause temporary or permanent changes in your hormone level, as can the virus. Also, measuring hormonal level(s) are a guess at best. That is what makes it so hard to diagnose true menopause, a woman has to have no symptoms or by-products of bleeding or ovulation for 12 straight months. Even if there is spotting, no matter how little, menopause is not considered to have begun until the 12 straight months. Since perimenopause is supposed to be the beginning, and can last for 10-20 years before true menopause, if you add the medications for HCV, it makes the diagnose that much more difficult. Wait for 6 months, and take precautions if you are sexually active, then see what your hormone levels are like. Also, make sure they check your thyroid levels as well. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 The question about treatment versus age and menopause, or perimenopause is very difficult to accurately diagnose. The medications can cause temporary or permanent changes in your hormone level, as can the virus. Also, measuring hormonal level(s) are a guess at best. That is what makes it so hard to diagnose true menopause, a woman has to have no symptoms or by-products of bleeding or ovulation for 12 straight months. Even if there is spotting, no matter how little, menopause is not considered to have begun until the 12 straight months. Since perimenopause is supposed to be the beginning, and can last for 10-20 years before true menopause, if you add the medications for HCV, it makes the diagnose that much more difficult. Wait for 6 months, and take precautions if you are sexually active, then see what your hormone levels are like. Also, make sure they check your thyroid levels as well. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 Dear Connie: Unless you are getting the interferon from a vial that was " cut " with lidocaine, all other prepacked doses seem to burn. There is not much you can do since it is the preserative that causes the burning and has nothi9ng to do with the needle. The " pen " does seem to bother people less. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 Dear Connie: Unless you are getting the interferon from a vial that was " cut " with lidocaine, all other prepacked doses seem to burn. There is not much you can do since it is the preserative that causes the burning and has nothi9ng to do with the needle. The " pen " does seem to bother people less. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 I'm amazed at how many people weren't told to warm up their meds. In " rebetron class " doc said to let the shot warm up about 30 minutes.. when I take the shot out of the fridge take my ibuprofen or wahtever at the same time. Very little sting to it when it goes in. alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 I'm amazed at how many people weren't told to warm up their meds. In " rebetron class " doc said to let the shot warm up about 30 minutes.. when I take the shot out of the fridge take my ibuprofen or wahtever at the same time. Very little sting to it when it goes in. alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
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