Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Has anyone heard their doctor mention pregnenolone? It's supposed to be able to rebuild the myelin sheath (insulation on the nerves). Second question. Every indication I have seen is that no one has a clue as to the root cause of seizures. Seems like a dirty little secret, nobody dare mention that truth, because we wouldn't want to embarrass the doctors. Would appreciate it if someone would disabuse me of that notion if false. > Re: [ ] Heello ? > > Date: Saturday, February 26, 2000 2:09 PM > > > > From: " Dawn Cupicciotti " <Dcup1@...> > > > > > > Hi nice guy. > > I'm on this list also, and like you, I haven't had any > > activity on here either. I'm assuming it is still active > > however, I am not the moderator, and I'm not quite sure > > who is. I have absence seizures and was diagnosed with > > them at age 2. What are your medical stats?LOL I hope > > we hear from some more people. > > > > > > > > > > > > Take care, > > Dawn > > > > ______________________________________________________ > > Get Your Private, Free Email at http://www.hotmail.com > > > > > > ------------------------------------------------------------------------ > > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% > > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > > 1/915/4/_/442641/_/951592181/ > > ------------------------------------------------------------------------ > > > > _ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 my son takes neurontin and topamax and for the most part he hasn't had any sideeffects form these 2. He has tried many also . dilantin , depakote, ativan ,phenobarbital, gabitril, tegretol and carbitrol. he will be starting in aclinical trial of keppra next month . this drug will be coming out then and does have fda approval. From looking at the research it looks good. many of the stuff jonathan took he either was allergic or he couldn't handle the emotional side effects. good luck with the search for answers. julie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 simy fortuanately my son is one of the few with an answer as to the casue of the seizures and yet it is no different then a person that does. the out come is the same. i have sat in on many lectures and have talked with many neuro. on a personal level and there isn't one that i have meet that wouldn't like to know why for every person. all they can do is test and test again and thenhope to find the right answer. but for many there isn't one. all we hope is the drugs they take will do their job and hope for more seizure free days. so my suggestion is stop being bitter and go and learn form them for that will help you find your answers. there are many conferences to attend that will give you a better understanding. Good luck with you search, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Hi Simy, I'm on Lamictal for absence seizures, and for me, it has the least amount of side effects. I like it as it had cut my seizures down to almost nil. The only side effects I've experienced, and they usually coincide with a raise in dosage, are sporadic hand tremors, and a myoclonic jerk upon going to sleep...not a seizure, just a little jump of one limb once in a while. It leaves me somewhat hyper, which is fine by me because I have a 5 yr old to keep up with. I've heard that while Lam. works really well on partials, absences, and as a second med to tonic-clonics, it tends to bring out, or even exacerbate general myoclonics. Everyone is different, so maybe that is why it wasn't for you. Just my opinion. Take care, Dawn ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Hello , They say about 70% of all seizure types are " idiopathic " . Drs. say that idiopathic means " no known cause " . I personally think it means they just haven't found the answer yet. Look at all of the things about medicine that we didn't know 60 yrs ago....I'm sure some of those things were deemed idiopathic also. Of course, some seizures are caused by brain tumors. Others may also be caused by metalbolic imbalances or defic- iencies, lesions, in utero strokes(believe it or not) head trauma etc,etc... Those things are definitely not idiopathic. They've just recently discovered that the SUSEPTIBLITY(sp?) to some seizure types may be genetic. Thsi means that the seizures themselves are not inherited, but the seizure thresh- old is much lower than the average persons, and it takes some sort of traumatic event such as a repeated high fever, direct head trauma etc,etc... to set off the seizures. Then again, a person may never have a seizure in their life. My neuro, who is VERY good i might add, explained that some people have seizures and display a perfectly normal EEG,MRI,CTscan, and many times repeatedly. Others show substantial seizure activity, and have never had a seizure. She also said that if they can't positively identify a specific event such as fever,then they may just be lazy(my opinion) and label it idio. For example, I'm adopted, know NOTHING about my birth parents....all of my records were sealed, there was no such thing as " open " adoption. Therefore, we don't know if any of the events listed above, may have occured either during birth, or before my parents(as I'll always call them) adopted me. Who knows? I just know that not all seizures are idiopathic that's for sure. You can't really put the brunt of the blame on the Drs for just not knowing the answers yet. Just thought I'd contribute my opinion, knowledge, and experiences. Take care, Dawn ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 one word....vaccines! Kathy RE: [ ] NEW ON THE LIST >From: " Dawn Cupicciotti " <Dcup1@...> > > > > Hello , > They say about 70% of all seizure types are " idiopathic " . > Drs. say that idiopathic means " no known cause " . I personally > think it means they just haven't found the answer yet. Look > at all of the things about medicine that we didn't know 60 > yrs ago....I'm sure some of those things were deemed idiopathic > also. Of course, some seizures are caused by brain tumors. > Others may also be caused by metalbolic imbalances or defic- > iencies, lesions, in utero strokes(believe it or not) head > trauma etc,etc... Those things are definitely not idiopathic. > They've just recently discovered that the SUSEPTIBLITY(sp?) > to some seizure types may be genetic. Thsi means that the > seizures themselves are not inherited, but the seizure thresh- > old is much lower than the average persons, and it takes some > sort of traumatic event such as a repeated high fever, direct > head trauma etc,etc... to set off the seizures. Then again, > a person may never have a seizure in their life. My neuro, > who is VERY good i might add, explained that some people have > seizures and display a perfectly normal EEG,MRI,CTscan, and > many times repeatedly. Others show substantial seizure activity, > and have never had a seizure. She also said that if they can't > positively identify a specific event such as fever,then they > may just be lazy(my opinion) and label it idio. For example, > I'm adopted, know NOTHING about my birth parents....all of my > records were sealed, there was no such thing as " open " adoption. > Therefore, we don't know if any of the events listed above, may > have occured either during birth, or before my parents(as I'll > always call them) adopted me. Who knows? I just know that not > all seizures are idiopathic that's for sure. You can't really > put the brunt of the blame on the Drs for just not knowing the > answers yet. Just thought I'd contribute my opinion, knowledge, > and experiences. > > > > > Take care, > Dawn > >______________________________________________________ >Get Your Private, Free Email at http://www.hotmail.com > > >------------------------------------------------------------------------ >Tired of missing calls while online? Now you can surf the Internet >without worrying about missing important calls! CallWave's FREE >Internet Answering Machine lets you hear who's calling while online. >1/1927/4/_/442641/_/951750896/ >------------------------------------------------------------------------ > >_ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Kathy, You're right. That's one thing I forgot about...vaccines. ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2000 Report Share Posted March 1, 2000 Dear Hi. Would you be kind enough to e-mail some info on KEPPRA?. Side effects - Web SITES whatever......... Where is research available on KEPPRA ? How old is you son ?. What kind of seizures does he suffer from? In what part of the U.S. do you live that this new drug is making its way around there already ? Simy Mother of a 10 year old autistic-epileptic boy ---------- > From: Topmom7698@... > onelist > Subject: Re: [ ] NEW ON THE LIST > Date: Monday, February 28, 2000 9:18 AM > > From: Topmom7698@... > > my son takes neurontin and topamax and for the most part he hasn't had any > sideeffects form these 2. He has tried many also . dilantin , depakote, > ativan ,phenobarbital, gabitril, tegretol and carbitrol. he will be starting > in aclinical trial of keppra next month . this drug will be coming out then > and does have fda approval. From looking at the research it looks good. many > of the stuff jonathan took he either was allergic or he couldn't handle the > emotional side effects. good luck with the search for answers. > julie > > ------------------------------------------------------------------------ > Start your own free email group on eGroups. > 1/1884/4/_/442641/_/951747489/ > ------------------------------------------------------------------------ > > _ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2000 Report Share Posted March 1, 2000 Hi Simy, son will be starting the new drug keppra we hope in about 6 weeks after the baseline part of the study. we live in maryland and our son is treated at childrens national medical center in DC. the research on keppra looks good. our biggest concern for him is the neuro psych effects from this drug. this study will be conductedd at several sites through out the country. i know that to be included your child would ahev to have a minimum of 4 seizures amonth. Here are a couple of links that might be useful <A HREF= " http://pharminfo.com/pubs/druginfoline/druginfo2_11.html " >Keppra Approved as Adjunctive Therapy for Epilepsy</A> you can also get more detailed info through the fda for new drug s that have been approved. this drug will be available on th market this spring. If i can be of further help let meknow. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Dear How are you ? I spoke to my son's neurologist about KEPPRA. He did not seem to know enough about it. You see we live in ONTARIO , CANADA. I now gave him the other name for it and he has yet to respond. What other drugs has your son been on and why would you want to try KEPPRA at this point and time. My son is on NEURONTIN + a bit of topomax and a bit of Depakote. He averages one grand mal seizure every two-three weeks and daily 7 small seizures lasting 30 - 60 seconds. My doctor imported zonisamide from JAPAN. I hate the fact that blood work is needed all the time to monitor levels and liver intoxication. So I am debating whether not to try keppra. Are you able to share with me your doctor's name so that my neuro here in Canada could speak directly to him regarding this new drug ?. WITH MUCH APPRECIATION SIMY ---------- > From: Topmom7698@... > onelist > Subject: Re: [ ] NEW ON THE LIST > Date: Wednesday, March 01, 2000 9:18 AM > > From: Topmom7698@... > > Hi Simy, > son will be starting the new drug keppra we hope in about 6 weeks after the > baseline part of the study. we live in maryland and our son is treated at > childrens national medical center in DC. the research on keppra looks good. > our biggest concern for him is the neuro psych effects from this drug. this > study will be conductedd at several sites through out the country. i know > that to be included your child would ahev to have a minimum of 4 seizures > amonth. Here are a couple of links that might be useful <A > HREF= " http://pharminfo.com/pubs/druginfoline/druginfo2_11.html " >Keppra > Approved as Adjunctive Therapy for Epilepsy</A> > you can also get more detailed info through the fda for new drug s that have > been approved. this drug will be available on th market this spring. If i can > be of further help let meknow. > > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2065/4/_/442641/_/951920340/ > ------------------------------------------------------------------------ > > _ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Hi Simy, Our son too is on neurontin and topamax. the neurontin he takes is at 3900mg a day of the neurontin and 125 of topamax and B6 along with his ritalin for adhd. has been difficult to treat due to side affects of meds or being allergic. When the Keppra(levetiracetam) was brought to our attention a few months ago it already had FDA approval so we knew the testing had already been done. and the results were great. what was nice about it was that it is given 2 times aday and the dose of seizure control can be gained quickly. there is no blood work with it as it doesn't affect the kidneys and liver except that we're doing it as part of the study. we decided to do this because it is apparent that jonathan won't be controlled by the topamax even if we increase it. he hates taking the neurontin becasue he takes so many pills a day and its taken in 3 doses. the chances of having allergic reactions appear to be very slim and this is a big problem for him. our biggest concern is in the area of causiing neuro psych problems. but when we decided to do this we felt it was the right choice. seeing during this study it is a double blinded trial so he might end up with a sugar pill and if he doesn't like how he feels on it we can quit at anytime by just calling her. all his other meds stay the same during the study. At this point it seems to be the right choice. Our son is seen at Children's national medical center in DC by Joan Conry,MD. she is the director of the epilepsy clinic there and does most of the clinical trials. she was not involoved with the original study so her experince with it will be new. she has talked with some other neuros that were invloved with the study and they were very pleased with the results. the drug manufacture is UCB Pharma, inc. in Smyrna Georgia . they might be able to help your neuro locate a neuro that has already worked with the drug. I wish i could be of more help. I really don't think calling dr. conry will help much but if you want i'm sure she would be glad to help. I found this i an article on the study of Keppra that might help ther ewas a neuro quoted that was part of the study named Dr. Ilo Leppick , he is the director of research at MINCEP® Epilepsy Care, minneapolis , Mnnesota . I hope this helps with your search. You may e-mail me directly if you wish at Topmom7698@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Dear : I am new at this but it already feels like its been a long time. My daughter is 4 years old and has been diagnosed with systemic jra. She came down with it October 5th and I was lucky we had a final diagnosis by November. I had a great pedeatrician who hospitalized her and she got alot of tests done while she was there. Kristsin had a sed rate of 125 , her white blood count was very very high along with her platelets, she was anemic and seemed very sick. She could not walk and seemed to sleep all the time. In the hospital we saw the reumatologist who sent her home on indocin 3 times a day. She seemed to being doing better but still had 2 good days and then a bad day. Her sed rate went down to 60 but the white blood count and platelets didn't move. Once the bone marrow resluts were in and were negative the Dr. started her on prednisone and methotrexate. She has not had a real bad day since she has started the prednisone. She started on 25mg a day and is now down to 10 mg and is being weaned off that. Her sed rate and c-reactive protein are normal. Platelets are still high but starting to come down. She is going to preschool and back to dance and really doing well. I am wondering is she the lucky one or am I in for more. She seemed to get better so fast and I am so thankful. My heart goes out to all of you. I know when she was first sick how hard it was to watch her hurt. I think this is a great group and I really needed to talk and listen to other families going through the same thing. I wish you all the best and thank you for listening to me. Please write -anyone that has had such a good response to meds and let me know how long the remission has lasted. Thanks Again, Holly - Mother of - Marlton, NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Dear Holly, Our daughter was diagnosed two years ago at age 10 with systemic JRA. She was hospitalized in November as was your daughter, and finally diagnosed in the hospital. n was put on naprosyn twice a day, but she was still not the best. Then in January she was just missing too much school and she would have occasional fevers. She was put on 20mg of prednisone and plaquenil. It took us 13 months to wean her off of the steroids. As we lowered she would maybe say that a joint hurt here or there on the third day of lowering. But on the advice of our ped. rheumy we tried to push thru it. My philosophy has been if there is no fever--try to push through it or wait it out. As of today, n takes the occasional naprosyn, but she is still on plaquenil. She takes dance now and if fine with school. She tires a bit easier than other 13 year olds, but she has a normal life other than that. Sometimes n will complain of some joint, and time has taught us not to panic(though I sometimes still do), and it usually just disappears. In the seminars I have gone to on the disease through the Arthritis Foundation, most of the doctors say different percentages, but the jist is that some kids just get better. Then some just won't relent no matter what they throw at it. The doctors would like to find somekind of marker to let them know which kids are going to be the tough cases, and then they wouldn't have to throw a nuclear arsenal on the ones that seem to get better no matter what. I hope this helps. (n, age 13 next Saturday--systemic JRA) >From: lauriaholly@... >Reply- > >Subject: Re: New on the list >Date: Fri, 11 Jan 2002 16:03:21 EST > >Dear : >I am new at this but it already feels like its been a long time. My >daughter > is 4 >years old and has been diagnosed with systemic jra. She came down with it >October >5th and I was lucky we had a final diagnosis by November. I had a great >pedeatrician who hospitalized her and she got alot of tests done while she >was there. Kristsin had a sed rate of 125 , her white blood count was very >very high along with her platelets, she was anemic and seemed very sick. >She >could not walk and seemed to sleep all the time. In the hospital we saw the >reumatologist who sent her home on indocin 3 times a day. She seemed to >being >doing better but still had 2 good days and then a bad day. Her sed rate >went >down to 60 but the white blood count and platelets didn't move. Once the >bone >marrow resluts were in and were negative the Dr. started her on prednisone >and methotrexate. She has not had a real bad day since she has started the >prednisone. She started on 25mg a day and is now down to 10 mg and is being >weaned off that. Her sed rate and c-reactive protein are normal. Platelets >are still high but starting to come down. She is going to preschool and >back >to dance and really doing well. I am wondering is she the lucky one or am >I >in for more. She seemed to get better so fast and I am so thankful. My >heart >goes out to all of you. I know when she was first sick how hard it was to >watch her hurt. I think this is a great group and I really needed to talk >and >listen to other families going through the same thing. I wish you all the >best and thank you for listening to me. Please write -anyone that has had >such a good response to meds and let me know how long the remission has >lasted. >Thanks Again, >Holly - Mother of - Marlton, NJ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Welcome Holly (and ) - those first few days - to weeks and sometimes even months are scary - and we have all been there. I have a four year old son, who was diagnosed in late July/early Aug? (can't believe I don't remember) - but became ill in June of 2001). It can take a long time for the labs to look normal - even when the child is showing so much improvement - it was several months before the white blood cells reached normal - and even now I am told it is high because of the Pred. I am glad that is improving & hope for continued success with the weaning. My son was started at 27mg of pred - and is now at 18mg (his rhuemy practices a very slow weaning process 1.5mg every two weeks) but he is doing well with it so far. He still has some bad days - but very little pain compared to before. Good luck - our thoughts are with you. Val Rob's Mom (4,systemic) In a message dated Fri, 11 Jan 2002 4:09:01 PM Eastern Standard Time, lauriaholly@... writes: > Dear : > I am new at this but it already feels like its been a long time. My daughter > is 4 > years old and has been diagnosed with systemic jra. She came down with it > October > 5th and I was lucky we had a final diagnosis by November. I had a great > pedeatrician who hospitalized her and she got alot of tests done while she > was there. Kristsin had a sed rate of 125 , her white blood count was very > very high along with her platelets, she was anemic and seemed very sick. She > could not walk and seemed to sleep all the time. In the hospital we saw the > reumatologist who sent her home on indocin 3 times a day. She seemed to being > doing better but still had 2 good days and then a bad day. Her sed rate went > down to 60 but the white blood count and platelets didn't move. Once the bone > marrow resluts were in and were negative the Dr. started her on prednisone > and methotrexate. She has not had a real bad day since she has started the > prednisone. She started on 25mg a day and is now down to 10 mg and is being > weaned off that. Her sed rate and c-reactive protein are normal. Platelets > are still high but starting to come down. She is going to preschool and back > to dance and really doing well. I am wondering is she the lucky one or am I > in for more. She seemed to get better so fast and I am so thankful. My heart > goes out to all of you. I know when she was first sick how hard it was to > watch her hurt. I think this is a great group and I really needed to talk and > listen to other families going through the same thing. I wish you all the > best and thank you for listening to me. Please write -anyone that has had > such a good response to meds and let me know how long the remission has > lasted. > Thanks Again, > Holly - Mother of - Marlton, NJ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Hi , Your message was such a help. Josh didn't have such a great week last week. Rash everyday, on legs and chest. Complaining about quite a few joints hurting. Felt feverish but each time I checked, his temp was okay. Feeling tired out. Worries me to remember how when decreasing by just 1mg sometimes, usually from 10 to 9mgs, he'd go into another flare, when nothing but doubling up the dose again seemed to help. Talked to his nurse the other day, when she called about our upcoming appt. Josh was supposed to be seeing his rheumatologist this Friday. Instead, we'll be flying off island to see 's endocrinologist on that day. Find out what's happening with the growth hormone/bone age thing. Seems there's no definitive word on how long to wait out increased joint pain, how long to try to push through it. A week? Two? Do you wait until the fever returns or is that too late, already? Josh had his MTX Friday and the next day I gave him 4mgs of pred instead of 3. 3 on one day, 4 the next. Just in case. Wanted so badly for it to go smoothely so I'd rather not take any unnecessary chances. Seems to be feeling somewhat better now. Better just get used to that he may very well always or often have some amount of joint pain, unless he's taking too much prednisone. I guess we can both live with that. Okay. I will NOT panic : ) Hey, wasn't I the one who used to say as long as Josh got to 5mgs I'd be happy if he had to stay at that dose? Hmmm ... Thanks, Georgina It took us 13 months to wean her off of the steroids. As we lowered she would maybe say that a joint hurt here or there on the third day of lowering. But on the advice of our ped. rheumy we tried to push thru it. My philosophy has been if there is no fever--try to push through it or wait it out. As of today, n takes the occasional naprosyn, but she is still on plaquenil. She takes dance now and if fine with school. She tires a bit easier than other 13 year olds, but she has a normal life other than that. Sometimes n will complain of some joint, and time has taught us not to panic(though I sometimes still do), and it usually just disappears. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Hi Georgina, I am sorry to hear Josh hasn't been feeling so great - hope that is quick to improve. Rob seems to be maintaining pretty well - some increased pain complaints over the weekend - but less now. I looked at the photo album & the kids (young and not so young!) all look great! Josh is adorable - what a smile! Rob goes down to 16.5 mg prednisolone today! Take care, Val Rob's Mom (4,systemic) In a message dated Wed, 16 Jan 2002 12:01:23 AM Eastern Standard Time, " Georgina " <gmckin@...> writes: > > > > > > > > > > Hi , > > Yourmessage was such a help.Josh didn't > have such a great week lastweek.Rash everyday, on legs and chest. > Complaining about quite a fewjoints hurting.Felt feverish but each > time I checked, his temp was okay. Feeling tired out. Worries me to remember > howwhen decreasing by just 1mg sometimes, usually from 10 to 9mgs, > he'dgo into another flare, when nothing but doubling up the dose again > seemed tohelp.Talked to his nurse the > other day, when she called about our upcoming appt. Josh was supposed to be > seeing his rheumatologist thisFriday. Instead, we'llbe flying off > island to see 's endocrinologist on thatday.Find out what's > happening with the growth hormone/bone agething. > > Seems there's no > definitive word on how long to wait outincreased joint pain, how long > totry to push through it. A week? Two? Do you wait until the fever returns > or is that too late, already? Josh had his MTXFriday and the next > dayI gave him4mgs of pred instead of 3. 3 on one day, 4 the next. > Just in case. Wanted so badly for it to go smoothely so I'd rather not > take any unnecessary chances. Seems to befeeling somewhat better now. > Better just get used to that he may very well always or often have some amount > of joint pain, unlesshe's taking too much prednisone.I guess we can > both live with that. Okay.I will NOT panic : )Hey, wasn't I > the one who used to say as long as Josh got to 5mgs I'd be happy if he had to > stay at that dose? Hmmm ... > > Thanks, > Georgina > > It took us 13 months to wean her off of the > > steroids. As we lowered she would maybe say that a joint hurt here > or there > on the third day of lowering. But on the advice of our ped. > rheumy we tried > to push thru it. My philosophy has been if there is > no fever--try to push > through it or wait it out. As of today, n > takes the occasional > naprosyn, but she is still on plaquenil. She > takes dance now and if fine > with school. She tires a bit easier than > other 13 year olds, but she has a > normal life other than that. > Sometimes n will complain of some joint, > and time has taught us not > to panic(though I sometimes still do), and it > usually just > disappears. > > > > <!-- |**|begin egp html banner|**| --> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Georgina, sorry to hear about Josh..give him a hug from me..i hope all goes well. You know i have learned with this arthur dude..you just don't know what to do..so to me..it is (excuse the language) damned if you and damned if you don't. Here Tabitha is home again today..she is having problems with her sinuses again..and just feeling lousey. When she started remicade last year the doctor told me she might have sinus problems..well it has been over 1 yr. that she has been on remicade and as far as her arthritis goes..all in all i think she has done well with it but with the sinus drainage..it is aggravating. So with these meds ya take the bad to get some good..crazy huh! Well going to go..good luck at the growth doctor! take care, karen(tab16..poly) From: " Georgina " <gmckin@...> Reply- < > Subject: Re: Re: New on the list Date: Tue, 15 Jan 2002 18:56:15 -1000 Hi , Your message was such a help. Josh didn't have such a great week last week. Rash everyday, on legs and chest. Complaining about quite a few joints hurting. Felt feverish but each time I checked, his temp was okay. Feeling tired out. Worries me to remember how when decreasing by just 1mg sometimes, usually from 10 to 9mgs, he'd go into another flare, when nothing but doubling up the dose again seemed to help. Talked to his nurse the other day, when she called about our upcoming appt. Josh was supposed to be seeing his rheumatologist this Friday. Instead, we'll be flying off island to see 's endocrinologist on that day. Find out what's happening with the growth hormone/bone age thing. Seems there's no definitive word on how long to wait out increased joint pain, how long to try to push through it. A week? Two? Do you wait until the fever returns or is that too late, already? Josh had his MTX Friday and the next day I gave him 4mgs of pred instead of 3. 3 on one day, 4 the next. Just in case. Wanted so badly for it to go smoothely so I'd rather not take any unnecessary chances. Seems to be feeling somewhat better now. Better just get used to that he may very well always or often have some amount of joint pain, unless he's taking too much prednisone. I guess we can both live with that. Okay. I will NOT panic : ) Hey, wasn't I the one who used to say as long as Josh got to 5mgs I'd be happy if he had to stay at that dose? Hmmm ... Thanks, Georgina It took us 13 months to wean her off of the steroids. As we lowered she would maybe say that a joint hurt here or there on the third day of lowering. But on the advice of our ped. rheumy we tried to push thru it. My philosophy has been if there is no fever--try to push through it or wait it out. As of today, n takes the occasional naprosyn, but she is still on plaquenil. She takes dance now and if fine with school. She tires a bit easier than other 13 year olds, but she has a normal life other than that. Sometimes n will complain of some joint, and time has taught us not to panic(though I sometimes still do), and it usually just disappears. _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Georgina, I'm sorry Josh hasn't been feeling so well! I know that it's always emotionally difficult when you've been doing really well for a long time, and then you start feeling bad again. As far as the prednisone, the rheumy pretty much told me I will be on 5 mg indefinately, so I've just gotten used to that. Right now it's 10, but over the next week I'm going back to 5. The way I see it, as long as I am 5 or lower I won't worry about it. I take calcium supplements and everything, so in the long run this low dose shouldn't hurt me. On the other hand, I wouldn't settle for Josh having " some joint pain. " Any pain is a sign that something is wrong, and in the long run it would be better to have a little bit more prednisone, but not need a joint replacement when you're younger than 30! I hope Josh feels better soon! Elisheva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Hi Val, I'm so happy to hear that everything seems to be going pretty well for Rob. I hope this pred reduction doesn't rock the boat too much. Thanks for your good thoughts. Aloha, Georgina PS ... I'm glad you had a chance to visit the group's photo album. Much nicer than the old view, having to open each file individually, isn't it? If you can, add one of Rob. Or mail me one and I'll put it on, okay? I'll tell Josh you liked his pictures. I showed the kids last night, as soon as it was done, and he wasn't thrilled. He wants me to put up his school picture instead, since in the picture I took most recently he's not wearing a shirt. When we get back from Oahu I'll scan it in. I was thinking that I might also include a higher dose prednisone pic too, before and after, to show others that the puffy cheeks, extra hair growth, added weight, etc. aren't necessarily permanent features even for someone who needs long-term steroids. If Josh okays it, of course : ) I am sorry to hear Josh hasn't been feeling so great - hope that is quick to improve. Rob seems to be maintaining pretty well - some increased pain complaints over the weekend - but less now. I looked at the photo album & the kids (young and not so young!) all look great! Josh is adorable - what a smile! Rob goes down to 16.5 mg prednisolone today! Take care,ValRob's Mom (4,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Thanks, Elisheva. You've had JRA since you were 6, right? Yours is the voice of experience, talking. I know what you mean. Logically, I feel very grateful ... that the meds have controlled the disease as well as they have. It could be so much worse. Josh is very fortunate. Emotionally ... sometimes I get fed up with side effects he's had to deal with and I worry about possible long term effects we've yet to face. You are absolutely right, of course, about the trade off between taking an effective med versus undergoing a joint replacement that may have been preventable. But then, on the other side of the coin, while it might be helping keep his joints well functioning it may, at the very same time, be contributing to future cataract surgery the eye doctor talked about. Or the greater likelihood of him having to deal with bone fractures. See what I mean? Therein lies my dilemma. Don't get me wrong : ) I feel so grateful that he responds as well as he does, especially when I hear of other children who stop responding or who've had to discontinue due to adverse reactions but I think I will feel *lots* better if and when he takes just the indocin, MTX, Plaquinel, folic acid, miacalcin ... or some other combination of meds ... and can finally leave the pred behind. I think it is mostly emotional. Prednisone has become symbolic for me. When symptoms pop through again after he gets a long-awaited lower dose it's a reminder. Like the prednisone is just a band-aid covering up this unpleasant wound, that I wish would have gotten stitched up properly and already healed. But then a message like yours comes through and I think more realistically about the overall picture ... and that helps. Thanks : ) I do hope that your shoulder is feeling better. And, of course, I hope that everything will be okay for you as you taper your steroids this week. Good Luck. Aloha, Georgina I'm sorry Josh hasn't been feeling so well! I know that it's always emotionally difficult when you've been doing really well for a long time, and then you start feeling bad again.As far as the prednisone, the rheumy pretty much told me I will be on 5 mg indefinately, so I've just gotten used to that. Right now it's 10, but over the next week I'm going back to 5. The way I see it, as long as I am 5 or lower I won't worry about it. I take calcium supplements and everything, so in the long run this low dose shouldn't hurt me.On the other hand, I wouldn't settle for Josh having "some joint pain." Any pain is a sign that something is wrong, and in the long run it would be better to have a little bit more prednisone, but not need a joint replacement when you're younger than 30!I hope Josh feels better soon!Elisheva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2008 Report Share Posted April 19, 2008 Caren I to had scoliosis surgery and harrigton rods 34 years ago, lived on nerve paid meds and couldn't walk an distance without lots of pain. I didn't even know what flat back syndrome was until recently. I had revision surgery Aug 2007 and did great, up walking the halls within a short period of time and now walk a good 1/2 hour a day for FUN!!! Hope all go well D -- [ ] New On the List Hi everyone,I'm new on the list and was recently diagnosed as having flat back syndromeafter having scoliosis surgery with harrington rods 42 years ago. I've beenliving with terrible pain and have tried numerous nerve medications as wellas epidurals with no success. My only real option now is surgery. Icould really use some support. I hope many people here have had successwith revision surgery and can share their good experiences with me. I'mreally scared.Caren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2008 Report Share Posted April 19, 2008 Hi, Caren. Welcome to the group! If you're looking for support you've come to the right place. While I wouldn't wish flatback on anyone, it's a great comfort to know folks who are going through or have been through the same stuff. I learned about flatback and diagnosed myself while wandering around the online scoliosis sites. (Later had it confirmed by a spine doc.) This was back in 2000 or 2001, and I sort of stayed hooked up to one or more flatback groups ever since, but didn't reach the point where I was ready for surgery until 2005, when I first visited my surgeon. Then it was Aug./Sept. 2006 that I took the plunge. My experience wasn't exactly typical, as my scoliosis is congenital (literally "born with", but in scoliosis this means it was caused by being born with malformed vertebra/vertebrae), and during the pre-surgical testing it was discovered that my spinal cord was split in two over several levels by a little spur of bone, and that had to be corrected before the othopedic work could begin. So what was supposed to be a 2-stage procedure turned into 3 stages, and 6 weeks in hospital/rehab. It was a really long haul, but the good news is that I had excellent care and came out of it with perfect sagittal alignment. (My before and after x-rays are in the photos section under "Sharon".) I can't talk much in terms of pain relief, as I really didn't have much spine pain or any of the radiating leg pain that so many of us experience. But I knew I'd rather face something of this magnitude as a healthy 48-year-old than wait until I'm older and maybe less healthy. Add to this the fact that my dad has flatback (got his fusion/rods a couple years after me), so I really do know what 80 years old looks like with flatback, and certainly didn't want to go there! At 18 months post-op I think my revision was quite successful. At 6 months I got my surgeon to prescribe pool PT, but unfortunately was benched (or is that "beached", LOL) for quite a while by recurring ingrown toenail infections and surgeries. I re-started 5 weeks ago (and had another toenail surgery yesterday -- agh!), and have made real progress, but I figure I'd be in even better shape now had I not had the interruptions. I swim, bike, and garden. I schlep heavy water lily pots around my garden pond. Last winter I installed our new toilet (!) with a little lifting help from Hubby. I pay for it the next day when I over-do, but no worse than before revision. I should add that I was very careful while the spine was fusing to obey the limits set by my surgeon, wore my bone growth stimulator very faithfully, got plenty of rest and good nutrition, and have waited for the doc's ok before doing new stuff. I still budget my bend-overs carefully and try to pace myself and use good body mechanics. But I feel strongly that much of my recovery has been linked to the physical work of getting myself strong again. I also worked hard pre-surgery to be in the best shape I could. Not everyone is able to do that, but if you can, it's worth doing. All this to quote my mentor, , "There is life after revision!" You absolutely MUST have the most skilled, revision-experienced surgeon possible, know there are no guarantees, and plan on doing your job on the healing end of things. Enlist the help and support of family and friends, and make sure they know how much you appreciate it! Make friends of your caregivers in the hospital, but don't be afraid to speak up if a proposed treatment or test is or sounds too painful. There may be a less painful alternative. One dear nurse made a lasting impression on me by saying, "You have the right to refuse any treatment." Obviously you want to be as "good" and cooperative as possible, but you're the one living in that body! I won't say that modern scoliosis surgery was easier or less painful than my first go-round in 1971. But it was very different. Pain control techniques are better, and when I said I needed better control, they tried something different and it was better. I asked if I could have Tylenol on top of my narcotic stuff, and the answer was yes, and it helped too. Getting up soon after surgery was a huge change, as was having to walk the halls and climb stairs before going home. I was so happy to be up and around, that 1 week after going home I had a couple over for dinner, complete with china and linen! My friend remonstrated, "I said 'no trouble!'", to which my husband replied, "She has to have her little tea parties", and I smiled and nodded. It was a bit different from lying in bed for months in a Risser cast, no?! Caren, I do hope you'll keep us all updated on your revision journey. The more you keep in touch the better a support we can be. Please consider participating in our mentoring program. (aka redmarmie) is the gal to talk to about that. Take care. Sharon [ ] New On the List Hi everyone,I'm new on the list and was recently diagnosed as having flat back syndromeafter having scoliosis surgery with harrington rods 42 years ago. I've beenliving with terrible pain and have tried numerous nerve medications as wellas epidurals with no success. My only real option now is surgery. Icould really use some support. I hope many people here have had successwith revision surgery and can share their good experiences with me. I'mreally scared.Caren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2008 Report Share Posted April 22, 2008 Hi Caren, I am so sorry that you are living with the pain that so many of us have had to deal with. I am a very new revision patient (2 weeks ago today!) and I wanted to try to encourage you. I had my 1st Harrington rod surgery in 1962 and my second in 1964 when I grew too much after the original surgery. I, also, tried every single option that was out there, because I couldn't face having surgery on my back again. I was referred to Dr. Bridwell in St. Louis last summer and I knew the minute I met him that he could help me. I cried and was quite upset when he said surgery was the only option, but after several months of thinking, praying, and realizing that I couldn't live with the terrible pain much longer, I scheduled my surgery. It was exactly 2 weeks ago, and I am so thankful and happy that I made the decision. I am home now and recovering on schedule.....it is certainly a difficult surgery and is life changing in many ways....mostly good. I knew the minute I woke up after surgery that the horrible lower back pain was gone...now, I'm dealing with the surgery pain, but that is certainly something I can deal with. I thank God everyday that I had the surgery, I found this website by accident and it has been such a lifesaver for me. There is so much good information from others who have had the surgery. Check out the " files " section and read some member stories. I printed off some of my favorite, encouraging stories and posts and I have them in a notebook. I could pick it up and read them whenever I was feeling anxious. All the best to you.... > > Hi everyone, > I'm new on the list and was recently diagnosed as having flat back syndrome > after having scoliosis surgery with harrington rods 42 years ago. I've been > living with terrible pain and have tried numerous nerve medications as well > as epidurals with no success. My only real option now is surgery. I > could really use some support. I hope many people here have had success > with revision surgery and can share their good experiences with me. I'm > really scared. > > Caren > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2008 Report Share Posted April 22, 2008 Thanks so much, . Keep us posted on your recovery and good luck! Caren > > > > Hi everyone, > > I'm new on the list and was recently diagnosed as having flat back syndrome > > after having scoliosis surgery with harrington rods 42 years ago. I've been > > living with terrible pain and have tried numerous nerve medications as well > > as epidurals with no success. My only real option now is surgery. I > > could really use some support. I hope many people here have had success > > with revision surgery and can share their good experiences with me. I'm > > really scared. > > > > Caren > > > Quote Link to comment Share on other sites More sharing options...
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