Guest guest Posted April 23, 2000 Report Share Posted April 23, 2000 Christie, I don't know how Dr. Cohen came up with the mito myopathy & lactic acidosis diagnosis for me. He didn't explain. Of course I should have asked but I didn't get the feeling that he wanted to answer too many questions until he had test results back.....but believe me, I'll have LOTS of questions at that point as I'd like to have all the nooks & corners of the last 7 years of illness all explained. Dr. Cohen didn't mention co2 or uric acid to me....he also didn't seem to think there would be a problem with the muscle biopsy. I asked specifically about my cardiac situation. I will have an ekg & echogram done prior to the biopsy. I don't have any obvious family history of mito though I believe that one can have a genetic mito error that only manifests in the right (or wrong) circumstances, viral or other. Punctate legions or UBO's (unidentified bright objects) are little bright spots that show up in an MRI of the brain. No one knows exactly what causes them, reduced blood flow, B-12 problems, lactic acid problems....they appear in MRI's of AIDS patients, alzheimers, patients, and many CFS cases. If I hold my MRI's up to the light I can see these punctate legions myself....Dr. Bell pointed them out to me. I think the skin biopsy shows a lot of mito problems except Complex 1 so for Complex 1 ( & probably for some other reasons as well) they need the muscle biopsy. It may be that if there is no evidence for that particular mito problem that they can diagnose without the muscle biopsy...I am still just learning about all this! The packet of information that Dr. Cohen gives patients on Mito disease is very helpful and informative...I am still reading through it. Dr. Cohen did say that he could treat me without the muscle biopsy but that the muscle biopsy would help him specify exact dosage needs for me of CoQ10 & Carnitine. Also they keep some of the tissue in the freezer which means that as research develops in a few years they can retest when they have new research directions. I had very bad reactions to Xanax and Klonopin. I took Xanax two years ago for insomnia and developed very bad cardiac arrhthmyias from it, it left me totally and severely bedridden for about four months. The Klonopin I took this winter for the same reason, thinking it would be very safe since it is so often prescribed for CFS. It seemed to be my miracle drug the first month, I slept great on a tiny dose. But then I suddenly lost ten pounds, had GI paralysis problems, developed upper right abdominal pain (liver area) and started having cardiac arrthymias again. When I went off the small dose slowly it was really scary, very terrifying breathing problems, very bad shaking & cardiac problems. Extremely unpleasant stomach problems. It took about six weeks to stop having a reaction to going off it. Apparently this class of drugs is VERY BAD for mito. Dr. Nass explained that the difference between autodiff and diff CBC is that the auto is done by machine and the diff is done by hand.... I too would love to know if there is a web site describing medical test info????? Christie, What is Angel Flights??????????????????? best, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Digest #864 wwith 's advertisement for Paypal was the last straw. This site has potential for getting important information out to so many people with autoimmune diseases, but some members continue to misuse it. I have written about this before, and have received email in agreement, but also had to put up with email from righteous, preachy members who monopolize the site. I give up-----------unsubscribe me. Insurance question > > Apparnetly insurance companies consider abx for arthritis to be > 'experimental'. > > Does anyone have any idea when results will be released and the > powers that be will then approve it as beneficial and therefore > viable claim? > > TIA Ann > > > ________________________________________________________________________ > ________________________________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2000 Report Share Posted June 21, 2000 Hi , Sometimes people unintentionally post to the whole group and sometimes the content isn't relevant to the group purpose. But if the subject is off-topic then the title usually says so and people can just skip that post. The general spirit of this group is supportive, helpful and full of information about treatment for these diseases. It's disappointing that you feel that a few off-topic posts count for such a lot versus the constant outpouring of love and concern that this group of nearly 500 people exhibits. If you want to unsubscribe, you have to do it yourself. Just send an email to rheumatic-unsubscribeegroups. Chris. >Digest #864 wwith 's advertisement for Paypal was the last straw. >This site has potential for getting important information out to so many >people with autoimmune diseases, >but some members continue to misuse it. I have written about this before, >and have received email in agreement, but also had to put up with email from >righteous, preachy members who monopolize the site. >I give up-----------unsubscribe me. > > > Insurance question >> >> Apparnetly insurance companies consider abx for arthritis to be >> 'experimental'. >> >> Does anyone have any idea when results will be released and the >> powers that be will then approve it as beneficial and therefore >> viable claim? >> >> TIA Ann >> >> >> ________________________________________________________________________ >> ________________________________________________________________________ >> >> >> > > >------------------------------------------------------------------------ >Special Offer-Earn 300 Points from MyPoints.com for trying @Backup >Get automatic protection and access to your important computer files. >Install today: >1/5667/0/_/532797/_/961563334/ >------------------------------------------------------------------------ > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 **Looking at the sun is an EXTREMELY hazardous thing to do. I don't care what some Indian fakir or the ancient Egyptians did, DON'T DO IT !!!!!! Sunbathe every day possible for 15 minutes, but do not look directly into the sun, ever. Best of Health! Dr. Saul Pressman, DCh** People could also take their hats off and let the sun shine onto the tops of their heads. We wear hats a lot in the winter and might not get enough of that little bath for the nervous system. Purks _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 Christi, I just went back into the files and added your additional information on Nori. Hope that's okay. Love the recipes would love to get your book when it comes out. It would be great to get it on CD or something so I can search. Wow! Thanks for the vote of confidence. I hadn't thought that far ahead. So far, I am just collecting and adapting as many recipes as I can find into three ring notebooks. And sharing in the files here of course. Will let you all know if it goes further than that. :-) Betsy P.S. I posted the honey lime chicken for whoever asked for it. You all are inspiring me to keep at this research! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2001 Report Share Posted December 12, 2001 Hi Everyone, I think I need to reintroduce myself. My name is Diane and I have 4 kids. Adam is 10 my twins and (ds) are 5 and is 11 months. I have been a lurker for months, and have somewhat resurfaced from kid overload. I am very concerned about my . She is 5 and totally non verbal. I have been around other kiddos with DS and they are talking at 2 or 3. I am not trying to compare but I am truly concerned. She has become extremely hyper and can't focus on any one task. Instead of talking she signs some but usually whines are squawks. It is getting increasingly difficult to bring her anywhere because she will run away. I am looking into a secondary diagnosis for her like ADHD or possibly autism, although she interacts with her peers. Anyhow I was hoping to get advise from you all. It breaks my heart because I know she is truly frustrated and I have tried everything to bring her out, but for some reason she can't or won't speak. When I talk with her teachers and therapists they don't seem too concerned. This really gets me going. Obviously something is going on. Sometimes I thing that because she is so " cute " people just overlook her delays. She has this sort of manic laugh she does too instead of talking and people think that it is cute, but after a whole day of laughing it gets real old. Anyhow I hope someone out there has had a similar experience or has a child with DS and a secondary diagnosis who can give me some advice. I really want to get what she needs. Diane Mom to Adam 10, and (ds) 5 and 11 Months --- Multiples-DS wrote: > http://DSyndrome.com/Multiples > ------------------------------------------------------------------------ > > There are 6 messages in this issue. > > Topics in this digest: > > 1. Anyone else gotten this ?? > From: " and Marc deBloois " > <debloois4@...> > 2. Mainstream V Special Ed > From: " Carolyn Sykes " > <tcsykes@...> > 3. Re: Mainstream V Special Ed > From: zmadad@... > 4. Re: Mainstream V Special Ed > From: " Carolyn Sykes " > <tcsykes@...> > 5. Re: Mainstream V Special Ed > From: GVanHouten <rjvh@...> > 6. Re: Mainstream V Special Ed > From: Pam Houser <p_houser37@...> > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 1 > Date: Fri, 7 Dec 2001 14:25:20 -0500 > From: " and Marc deBloois " > <debloois4@...> > Subject: Anyone else gotten this ?? > > > > I was wondering if anyone else has gotten this email > about a missing child. > It has a picture of a pretty red haired little girl > saying that she is > missing. It doesn't ring true with me since there > is no information like > the parents names, location last seen or date > abducted. I looked on the > hoax watch sights and didn't see anything about it. > If it is a hoax it is > in very poor taste. There is nothing funny about a > missing child. > > Just wondering, > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 2 > Date: Sat, 8 Dec 2001 08:48:04 +1300 > From: " Carolyn Sykes " <tcsykes@...> > Subject: Mainstream V Special Ed > > Hi all - hope you are all lit up for the Christmas > season. We have yet to put up our tree.....since > our move, I can't find it! LOL > > I've come to a very difficult conclusion about > Emma's education. I am going to enrol her into a > Special school. I just feel that her safety is far > too important to risk putting her into a mainstream > situation where she could slip out the door. She > has been allocated a teacher aide for only 15 hours > per week and there are no answers as to what we > would do for the other 15 hours. At the Special > school she will have a shared teacher aide (which > will give her some independence) and her safety is > guaranteed. Also she will get oodles of Speech > Therapy, OT, music therapy PLUS she gets to go > horseriding once a week and swimming lessons. It > all sounds too good to pass up but on the flip side, > I am worried that she won't have her friends that > she knows in the mainstream school. I'm also > worried that she will pick up some unwanted > behaviours etc. I guess that is something I have to > discuss with the teachers. That and having high > educational expectations of her. > > I know we have discussed this subject before and I > guess one just has to do what ones gut feeling tells > one. What did I just say? LOL - my brain hurts just > thinking about what would be best for the Divine > Miss Em. Who knows what's best until you try it. > > Confused Carolyn > Mum to on, , Emma (Ds) and Nicki (Ds) > www.geocities.com/nz_mom/sykesfamily.html > > > > > [This message contained attachments] > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 3 > Date: Fri, 7 Dec 2001 15:12:35 EST > From: zmadad@... > Subject: Re: Mainstream V Special Ed > > In a message dated 12/7/01 1:58:52 PM Central > Standard Time, > tcsykes@... writes: > > > > I guess one just has to do what ones gut feeling > tells one. What did I just > > say? LOL - my brain hurts > > Carolyn, > > Been there, and done that and my brain hurts too. > You are right that we all > have to do what we think is best. Wouldn't it be > great if our kids came with > a crystal ball or something? I'm sure Em will love > her new school, it sounds > wonderful. I know you will keep an eye on things > and make sure she has > friends. > > We went the other way (inclusion) with Zack and Matt > and some days my brain > hurts wondering if we are doing the right thing. > Like you, I keep an eye on > the school and make sure they have some friends. > Sometimes it is all very > hard work. But the payoffs are big. > > Just because we take different roads, doesn't mean > we all don't want similar > outcomes for our kids. Healthy, happy, and as > independent as possible -- > those are my goals. I don't think there is any one > " right way " to do it. If > there is, someone please let me know, cause I'm > flying by the seat of my > pants! > > Not that this has anything to do with this, but our > neighbor girl is named > and Zack calls her " Memily " . It is so cute! > > Good luck! > > Sue - mom to Zack, 9, DS, 2 ASDs, VSD, bad mitral > valve; Matt, 8 on Sunday!, > PFO, PDD, 's Anomaly, Cataracts, Glaucoma; > , 4, DS, Asthma, G-tube > (Now our angel boy 4/20/96 - 12/31/00) > > DisLabeled Writings > http://hometown.aol.com/zmadad/page11.html UPDATED! > > 's Candle Shrine > http://artwells.com/oracula/anonimmus/shrine.html?shaemmusid=0111238045898 > > > [This message contained attachments] > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 4 > Date: Sat, 8 Dec 2001 09:15:55 +1300 > From: " Carolyn Sykes " <tcsykes@...> > Subject: Re: Mainstream V Special Ed > > Thank you Sue - you are very encouraging! It's not > an easy thing making decisions for our kids is it? > I just want Emma to be happy and to never be > frightened. I must admit, when I visited the > Special school, I was frightened by some of the kids > there. They were pretty big! > > Emma has no sense of safety and the mainstream > school she was enrolled at is on a very busy road. > I am scared silly that one day someone will have > their back turned and out she would go. > > The Special School have satellite classes in the > school that my older 2 are at, so when she stops > running, she'll be able to attend there and join in > all the school activities as well as benefit from > the activities of the Special school. > > Thanks for listening - it really helps to sit here > and type furiously!! :-) > > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2001 Report Share Posted December 12, 2001 Diane, I am ,mom to 8yr(DS) and Dayton 3yrs(DS). also has been dignosed with ADHD. She is a BIG runner and non verbal till recently. She talks clear but very limited. She stills signs alot with her gestures and words. She yet to really carry a conversation with me.BUT it is ok... her words are sounding more clear. Before she was never focus and loves to take off and RUN! This past summer,after 3 testing with physcolgy(sp)finally came up with ADHD. She was tried on Ritialn but that was not for her. Now we are on dextrostate,5mg 2xday... Oh boy it works great! She has been having trouble sleeping so we are going to have a sleep study done sat night.. so I will let you know if the meds affect her. She gets up every 2 hrs all night long.. it is very tiring. As for Dayton he is very hyper...starting to shows signs of autism... but they say we have to wait and pan it out. the meds we tried for him (like 's meds) have done nothing for him. He does not make eye contact and hums alot! We have to give quick hugs and let him go or he will scream.. not sure if this is a boy thing or autism signs. Good luck.. Hope I haven't confused you anymore... ,mom to 8yr(DS,ADHD) and Dayton 3yrs (DS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Thanks for the info . sounds alot like . How did you convince your doctor to test her. It seems to me that when you have a child with Down Syndrome people and professionals assume that everything that is going on with your child is because of the extra Chromosome and it can't be another diagnosis. Her teachers chalk it up to the fact that her cognitive age is around 2 and all 2 year olds can't focus. Well that is so not true. Her little sister at 11 months can focus on a task longer than ! I have brought to a counselor who specializes in pediatric disabilities and she was floored by how hyper was. I am going to see her today and hopefully she will have some insight and then I can use her notes to convince my doctor we need to pursue it further. What is really frustrating is that understands everything I tell her. She is even potty training, but the words are not there and she can't sit still to play appropriately with her brothers and little sister. The only thing she will spend time doing is flipping through magazines and watching her favorite video. Well I will keep you all posted. I am bound and determined to figure this out for 's sake. Diane Mom to Adam 10, and (ds) 5 and 11 months > Diane, > I am ,mom to 8yr(DS) and Dayton 3yrs(DS). > > also has been dignosed with ADHD. She is a BIG runner and non > verbal till recently. She talks clear but very limited. She stills signs > alot with her gestures and words. She yet to really carry a conversation > with me.BUT it is ok... her words are sounding more clear. Before she was > never focus and loves to take off and RUN! This past summer,after 3 testing > with physcolgy(sp)finally came up with ADHD. She was tried on Ritialn but > that was not for her. Now we are on dextrostate,5mg 2xday... Oh boy it works > great! She has been having trouble sleeping so we are going to have a sleep > study done sat night.. so I will let you know if the meds affect her. She > gets up every 2 hrs all night long.. it is very tiring. > > As for Dayton he is very hyper...starting to shows signs of autism... but > they say we have to wait and pan it out. the meds we tried for him (like > 's meds) have done nothing for him. He does not make eye contact and > hums alot! We have to give quick hugs and let him go or he will scream.. not > sure if this is a boy thing or autism signs. > > Good luck.. Hope I haven't confused you anymore... > > ,mom to 8yr(DS,ADHD) and Dayton 3yrs (DS) Quote Link to comment Share on other sites More sharing options...
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