Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 , Welcome to the group and I hope you soon feel like we are all part of your family. My son is systemic and was diagnosed at 33 months old. We had an awful time with the Prelone syrup for several weeks.It is very bitter and nasty tasting.I have no quick solutions other then hold your ground and just keep trying.Joe will eventualy come around and at some point he probably will not mind the taste at all. Something you can try is haveing it flavored at the pharmacy. Methotrexate is absolutely the next step in the right direction.It does however take several weeks to start working. The best thing you can do is learn as much as you can about the disease and the drugs used to treat it.This can be very overwhelming and scarey,sometimes you can just read to much medical jumbo.Thats where we all come in.There isn't a drug out there or a drug combo that one of our kids has not tried.Parent input is the best and it helps balance things. Hugs Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Hi, and welcome. Although my son does not have systemic and I am sure one of those moms will chime in soon, I do have some experience with the oral pred with a little one, as my son has asthma also and had to take that when he small. It is rather hard as it tastes awful as I recall. For my son, we would try stirring it into a small amount of pudding or applesauce or even ice cream. Not the best, but it did help. Would putting a flavor in it at the pharmacy be possible? They did not have that when my kids were little, but I see the signs for it now. About the MTX pills, you can hide them in the same things if he has a tough time swallowing them. It seems to me, though, that most of the younger kids here are on the MTX injections. They seem to work better and cause less stomach upset for the little ones. The folic acid may be available in a chewable vitamin with a high enough dose - I am not sure. The folic acid is important though, as it helps to keep the side effects of the MTX at a minimum. Again welcome to our little group. You have found a great place to learn and to know there are others out there who know exactly what you are going through. Michele ( 17, pauci & spondy) New to group Hi my name is and I have been observing for the last week. Sorry for the long messate On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped rheum at University of Iowa with systemic after 4 weeks of fevers (CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out infection and cancer ect. (had bone scan, bone marrow and CTs negative) The kiddo is mean and tired (I would be too). Poor appetite, anemic, won't eat anything. ( the milkshakes idea is great!) Any suggestions for getting oral prednisone liquid down? My husband and I hold him down and he spits it out? We blow in his face and maybe gets a tenth of the med. He sees medicine and he runs away. Encouraged ice before or a chaser after. He won't listen to it. 2nd question: We are going to start methotrexate tablets with folic acid also in the next week? Is this considered " standard " ? Or what is standard? I know it is important to try to taper off the predinsone in a timely manner? Also any other advice or suggestions are appreciated. Or any insight into kids with systemic JRA concerns. Thanks for your time and listening , (Joe 3 systemic dx 3-1 -05) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Our daughter was on Pred and the doctor told us that it was ok to mix it with her ibuprofen (I'm not sure if your son is on that or not). We just measured them both out and then took the syringe and mixed it up and then she took it great. I understand though because my daughter had taken pred by itself for pneumonia several times before and we did the same thing...hold her down, blow in her face...you name it we tried it and nothing worked. We tried mixing it will food and she refused to eat...I defiantly would NOT recommend mixing it with food. She refused to eat anything for a LONG time. The doc also told us to mix it with chocolate syrup but my daughter didn't like chocolate. Best of luck!!!! New to group Hi my name is and I have been observing for the last week. Sorry for the long messate On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped rheum at University of Iowa with systemic after 4 weeks of fevers (CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out infection and cancer ect. (had bone scan, bone marrow and CTs negative) The kiddo is mean and tired (I would be too). Poor appetite, anemic, won't eat anything. ( the milkshakes idea is great!) Any suggestions for getting oral prednisone liquid down? My husband and I hold him down and he spits it out? We blow in his face and maybe gets a tenth of the med. He sees medicine and he runs away. Encouraged ice before or a chaser after. He won't listen to it. 2nd question: We are going to start methotrexate tablets with folic acid also in the next week? Is this considered " standard " ? Or what is standard? I know it is important to try to taper off the predinsone in a timely manner? Also any other advice or suggestions are appreciated. Or any insight into kids with systemic JRA concerns. Thanks for your time and listening , (Joe 3 systemic dx 3-1 -05) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Hi Michele, Welcome to the group. This is a great place to get info from parents of systemic kids. I agree with Becky to read as much as you can about systemic jra. And yes, prednisone tastes awful. We used to use a whiskey shot glass, and we filled it with chocolate milk. We added the prednisone to the chocolate milk. Our son, who was four, thought it was cool to drink out of the little glass, and the flavor was a little disguised. Sometimes I would take a syringe (with no needle) and squirt the chocolate milk and prednisone mixture into his mouth. It's not an easy process. Best wishes. , and Ezra, eight year old systemic 3/3/05 1:41 PM, " micmert1 " <micmert@...> wrote: > > > > Hi my name is and I have been observing for the last week. > Sorry for the long messate > > On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped > rheum at University of Iowa with systemic after 4 weeks of fevers > (CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out > infection and cancer ect. (had bone scan, bone marrow and CTs > negative) > > The kiddo is mean and tired (I would be too). Poor appetite, anemic, > won't eat anything. ( the milkshakes idea is great!) > > Any suggestions for getting oral prednisone liquid down? My husband > and I hold him down and he spits it out? We blow in his face and > maybe gets a tenth of the med. He sees medicine and he runs away. > Encouraged ice before or a chaser after. He won't listen to it. > > 2nd question: > > We are going to start methotrexate tablets with folic acid also in > the next week? > > Is this considered " standard " ? Or what is standard? I know it is > important to try to taper off the predinsone in a timely manner? > > Also any other advice or suggestions are appreciated. Or any insight > into kids with systemic JRA concerns. > > > Thanks for your time and listening > > , (Joe 3 systemic dx 3-1 -05) > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Hi , Welcome to the group. My name is and my daughter, Aundrea age 9 has arthritis with systemic symptoms. We also go to the University of Iowa and we see Dr. Polly Ferguson. We have been going there for over a year now. Aundrea had two major flares with high fevers and rashes and then the joint pain in wrist, knees and ankles. She started off with Plaquenil. After about six months the flares kept returning. She started prednison and we did two tapers this winter. She started methotrexate (mtx) about 2 months ago in addition to the plq and folic acid. After week three of the mtx, Aundrea has not had any joint pain. Some occasional stiffness and still gets a frequent, fleeting rash on face and chest. But, overall she is so much happier. Her grades have once again returned to A's and B's and her playful personality has returned. When she was feeling miserable and dealing with the mood swings from the steroids she was extremely challenging to deal with. She could go from giggles to tears in minutes. Hopefully the mtx will start to get things under control and then you will be able to start tapering the pred. I wonder if there is any possibility of getting the pred in pill form and then crushing it and putting it in icecream, applesauce, or pudding? I am glad you joined the group and just fire away any questions that you have. There are some very experienced people on this list and I have found it to be an invaluable resource. God Bless, (Aundrea 9 systemic) P.S. where do you live? I live in on Illinois which is about an hour north of the quad cities.-- In , " micmert1 " <micmert@m...> wrote: > > > Hi my name is and I have been observing for the last week. > Sorry for the long messate > > On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped > rheum at University of Iowa with systemic after 4 weeks of fevers > (CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out > infection and cancer ect. (had bone scan, bone marrow and CTs > negative) > > The kiddo is mean and tired (I would be too). Poor appetite, anemic, > won't eat anything. ( the milkshakes idea is great!) > > Any suggestions for getting oral prednisone liquid down? My husband > and I hold him down and he spits it out? We blow in his face and > maybe gets a tenth of the med. He sees medicine and he runs away. > Encouraged ice before or a chaser after. He won't listen to it. > > 2nd question: > > We are going to start methotrexate tablets with folic acid also in > the next week? > > Is this considered " standard " ? Or what is standard? I know it is > important to try to taper off the predinsone in a timely manner? > > Also any other advice or suggestions are appreciated. Or any insight > into kids with systemic JRA concerns. > > > Thanks for your time and listening > > , (Joe 3 systemic dx 3-1 -05) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Hi, Michele. My daughter was diagnosed with poly last October and started out with Pred, Naprosyn, and Zantac. She did best with the pred/bubble gum mix done by the pharmacist. It was still aweful, but I got some of the gummy vitamins, they are sugar coated as well and she always got one after the pred (you take two of those kind of vitamins a day), and she did great. She was only just turned 2, so she didn't know to fight it really. She has since tapered off the pred. and we are starting MTX this week. The MD said to keep taking the same vitamins she has been taking (the spiderman gummies twice a day) and that was sufficient for the folic acid. These gummies are GOOD and might be just the incentive he needs, along with a strond flavorx from the pharmacy!!!! It is certainly worth a try. My daughter did fight taking her meds in the beginning, but eventually she just got used to it and stopped fighting. Hope this helps. You have to do whatever it takes, because they HAVE to take the meds. If he wont swallow the MTX pills, ask about the shot, or taking the shot orally(that is what we will be doing). It is such a small amount of liquid, they don't get a chance to really spit it out. and Hailey-2-poly >From: " micmert1 " <micmert@...> >Reply- > >Subject: New to group >Date: Thu, 03 Mar 2005 18:41:36 -0000 > > > >Hi my name is and I have been observing for the last week. >Sorry for the long messate > >On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped >rheum at University of Iowa with systemic after 4 weeks of fevers >(CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out >infection and cancer ect. (had bone scan, bone marrow and CTs >negative) > >The kiddo is mean and tired (I would be too). Poor appetite, anemic, >won't eat anything. ( the milkshakes idea is great!) > >Any suggestions for getting oral prednisone liquid down? My husband >and I hold him down and he spits it out? We blow in his face and >maybe gets a tenth of the med. He sees medicine and he runs away. >Encouraged ice before or a chaser after. He won't listen to it. > >2nd question: > >We are going to start methotrexate tablets with folic acid also in >the next week? > >Is this considered " standard " ? Or what is standard? I know it is >important to try to taper off the predinsone in a timely manner? > >Also any other advice or suggestions are appreciated. Or any insight >into kids with systemic JRA concerns. > > >Thanks for your time and listening > > , (Joe 3 systemic dx 3-1 -05) > > > > > > > > Gray, Independent Educational Consultant Usborne Books At Home (UBAH) Award-winning children's books--from Tots to Teens! (410) 653-6339 Join Usborne Books at Home now! Go to www.ubah.com/k1679 and check it out. *While you're there register for a chance to win $50 in FREE books! * Home Shows * Book Fairs * Direct Sales * Reading Incentive Programs * Fundraisers * Schools and Libraries * Recruiting * Booths * FUN! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Hi , I, too, have a systemic son who's problems started when he was 3. He had all the systemic symptoms, but no lingering joint pain, so we didn't get a diagnosis til he was 7. Once diagnosed, he was started immediately on mtx. and pred. and he had already been taking naprosyn for 4 years. Once the mtx. seems to take effect (could be 4 - 12 weeks), then if your son's doing well, the pred will mostly likely get tapered. If the mtx. isn't working, they may try giving it in liquid form and you squirt it into juice. If that doesn't work, it can be injected. This is what really worked for us. Once we started doing the injections, that got my son to about 99%. If even the injections fail, than there are a number of other DMARDs to try, or combinations of DMARDs. If all those fail, then he can start with the BRMs (biologis response modifiers) such as Enbrel, Humira, Remicade or Kineret. The latest thinking is that if you can achieve medicated control quickly, that the prognosis may be better for the child. I am a fan of that approach. Not everyone is, but do your research and keep asking questions. I hope the mtx kicks in quickly and your son gets relief quickly. Stacia and Hunter 8 systemic, iritis (PS - you should get his eyes examined by a pediatric ophthalmologist periodically to screen for iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 , I forgot to welcome you. WELCOME. Stacia and Hunter 8 systemic, iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 I don't have any answers for the systemic JRA, however as far as the methotrexate I can offer a little advice. My son first started out on the pills and we used a pill crusher then mixed it with chocolate ice cream, or whatever kind your son prefers, and he took it really well. We could only be on the pills for a short time because it wasn't strong enough to help and also it caused problems with my sons stomach. We then switched to the injection until he developed a psychosis towards the needles. Deadra and Chase 7 pauci and uveitis micmert1 <micmert@...> wrote: Hi my name is and I have been observing for the last week. Sorry for the long messate On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped rheum at University of Iowa with systemic after 4 weeks of fevers (CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out infection and cancer ect. (had bone scan, bone marrow and CTs negative) The kiddo is mean and tired (I would be too). Poor appetite, anemic, won't eat anything. ( the milkshakes idea is great!) Any suggestions for getting oral prednisone liquid down? My husband and I hold him down and he spits it out? We blow in his face and maybe gets a tenth of the med. He sees medicine and he runs away. Encouraged ice before or a chaser after. He won't listen to it. 2nd question: We are going to start methotrexate tablets with folic acid also in the next week? Is this considered " standard " ? Or what is standard? I know it is important to try to taper off the predinsone in a timely manner? Also any other advice or suggestions are appreciated. Or any insight into kids with systemic JRA concerns. Thanks for your time and listening , (Joe 3 systemic dx 3-1 -05) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 This is so interesting to listen to this thread! Lexi actually DOESN'T MIND the taste of prednisone and hasn't ever complained! I guess I'm lucky! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 Dear , My son was also three when he was diagnosed with systemic JRA. He was diagnosed on 8/30/04. He turned 4 in Oct. He also started with the steriod and two weeks later we started mtx. I got great feedback from this group that it was good to be aggressive. From what I have read the more aggressive in the beginning perhaps the better the outcome. Our Dr. prescribed Orapred. I belive someone else mentioned this. My son did not have any problems taking it. I looked it up online when he was first given it. If I am remembering right it was only on the " market " a few years ago. I also belive that it is the only flavored steroid and was made for children. Also, (I think this was also mentioned by others) you can have medincine flavored. We use the Target pharmcacy and they showed me this big long list of all the flavors. Also they have recommendations for which flavoring works best for the type of medicine. It cost $3.00 to flavor. I am sure most pharmacys can do this. I know that he is small but we really tried to explain to my son when he did not want to take a medicine that this was what the docotor was doing to try to make him better. (He would ask us when was he going to get better.) At first I am not sure that it helped but as he began to feel better he really began to stop fusing about the medicine even the yucky medicine. He also began to handle the blood draws better. He does not want to go back to being sick and so we do not have any trouble with him taking medicine. My son also takes the Oral MTX. At first we crushed it up in applesauce. Now we put a whole pill in a spoonful of pudding and he swallows it just fine. I have just learned that you should take this on an empty stomach but a little food to help it go down is O.K. I am constantly learning and the people in this group are a great source of information. My son takes a multi-vitamin with 400mg of foic-acid. He takes the sugar-free super hero ones. Our Dr. said that this was fine unless he started having problems which so far he has not had any sores. Some children in this group take a prescription folic-acid. Also, I do not think that you mentioned that you were taking calcium with the steroid. Again, our Dr. told us that he should take the calcium. I believe that he actually said that if he ended up only being on it a short while 4 - 6 weeks then he would not need the additional calcium but that after a couple of months on the steriod the calcium was very important. So we went ahead and started giving him what the Dr. recommended. He took two calcium chews each day. My son was also very anemic and would not eat. Our Dr. explained that the inflamation is what casued the anemia and that until the inflamation went down the anemia would not improve. We also gave him pedisure and Ensure. Once that steriod kicked in though I could not keep him from eating. His weight before he gor sick ws 40 pounds then he lost 4 pounds. Once the steriod kicked in he went up to 46 pounds. I tried very hard to over only health foods. He was constantly hungery and and often very difficult. However, once he was off the steriod, even when he got down to a low dose, he was much easier to deal with. For some reason the steriod really bothered his nose and we had a hard time with that. He complained about his nose bothering him constantly. Keep visiting this group and you will learn alot. Christi (Logan, systemic, 4) micmert1 <micmert@...> wrote: Hi my name is and I have been observing for the last week. Sorry for the long messate On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped rheum at University of Iowa with systemic after 4 weeks of fevers (CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out infection and cancer ect. (had bone scan, bone marrow and CTs negative) The kiddo is mean and tired (I would be too). Poor appetite, anemic, won't eat anything. ( the milkshakes idea is great!) Any suggestions for getting oral prednisone liquid down? My husband and I hold him down and he spits it out? We blow in his face and maybe gets a tenth of the med. He sees medicine and he runs away. Encouraged ice before or a chaser after. He won't listen to it. 2nd question: We are going to start methotrexate tablets with folic acid also in the next week? Is this considered " standard " ? Or what is standard? I know it is important to try to taper off the predinsone in a timely manner? Also any other advice or suggestions are appreciated. Or any insight into kids with systemic JRA concerns. Thanks for your time and listening , (Joe 3 systemic dx 3-1 -05) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Stacia, Thank you for the insight. It is scary make choices with these medical options. But I too think that " aggressive " treatment " is needed early to at least attempt to prevent joint damage and taper down the steriod. It is just probable Systemic JRA and Joe has trouble describing if things hurt. One day his " knees are wobbly " the next his elbow hurts. I do know my child likes to be carried around a lot and doesn't' want to take stairs in the morning. This past summer he won't pedal a bike or trike because it was " too Hard " . But he could run with the best of three year olds. I just don't want to take a chance that this is all a concidential and a behavior issue with being an only child. Thanks for the eye exam reminder. Joe has one in about a month with a peds eye doctor. Take care and I wish Hunter the best (JOE 3, systemic) Re: New to group Hi , I, too, have a systemic son who's problems started when he was 3. He had all the systemic symptoms, but no lingering joint pain, so we didn't get a diagnosis til he was 7. Once diagnosed, he was started immediately on mtx. and pred. and he had already been taking naprosyn for 4 years. Once the mtx. seems to take effect (could be 4 - 12 weeks), then if your son's doing well, the pred will mostly likely get tapered. If the mtx. isn't working, they may try giving it in liquid form and you squirt it into juice. If that doesn't work, it can be injected. This is what really worked for us. Once we started doing the injections, that got my son to about 99%. If even the injections fail, than there are a number of other DMARDs to try, or combinations of DMARDs. If all those fail, then he can start with the BRMs (biologis response modifiers) such as Enbrel, Humira, Remicade or Kineret. The latest thinking is that if you can achieve medicated control quickly, that the prognosis may be better for the child. I am a fan of that approach. Not everyone is, but do your research and keep asking questions. I hope the mtx kicks in quickly and your son gets relief quickly. Stacia and Hunter 8 systemic, iritis (PS - you should get his eyes examined by a pediatric ophthalmologist periodically to screen for iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 I'm also taking my daughter off of the drugs and have been using supplements, what other supplements do you use besides those you mentioned. Do you take the oil in a capsule or just liquid? Thanks for your post. Grace twodogsnahorse <lindybuzz@...> wrote: Just found out about this group on another site and am so glad to find this place! I have grand mal and complex partials - gave up on the drug routine in May 2000. Have achieved amazing control, using vitamins and supplements (B complex, CoQ10, magnesium, taurine and flaxseed oil). Instead of counting the time between seizures in days, I now count in months and years. Been 13 months since the last one and had been seizure free for almost 2 years before that. I was never this seizure free on any of the drugs that I was given for more than 20 years! It seemed though that my brain, in the effort to really confound me, decided to get around the lack of seizures by throwing panic/anxiety attacks at me. After a year of refusing to take an antidepressant and using valium to treat the problem symptomatically, I found a supplement called 5-HTP in Prescription for Nutritional Healing. It was totally taken care of the panic attacks. I haven't slept this soundly - dreamed this vividly - and felt this energized in years. Glad to be here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 I forgot to ask, how much of each do you take? Thanks! Grace twodogsnahorse <lindybuzz@...> wrote: Just found out about this group on another site and am so glad to find this place! I have grand mal and complex partials - gave up on the drug routine in May 2000. Have achieved amazing control, using vitamins and supplements (B complex, CoQ10, magnesium, taurine and flaxseed oil). Instead of counting the time between seizures in days, I now count in months and years. Been 13 months since the last one and had been seizure free for almost 2 years before that. I was never this seizure free on any of the drugs that I was given for more than 20 years! It seemed though that my brain, in the effort to really confound me, decided to get around the lack of seizures by throwing panic/anxiety attacks at me. After a year of refusing to take an antidepressant and using valium to treat the problem symptomatically, I found a supplement called 5-HTP in Prescription for Nutritional Healing. It was totally taken care of the panic attacks. I haven't slept this soundly - dreamed this vividly - and felt this energized in years. Glad to be here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 In the AM, I take a multi-vitamin, 1000mg flaxseed oil, 30 mg CoQ10, 500 mg taurine and 500 mg magnesium. In the PM, I take 1000mg flaxseed oil, 500 mg taurine, 50 mg magnesium, 100 mg B complex and 50 mg 5-HTP (this last one I just added a month ago). Taking these have been an absolute Godsend for me. Started the 5-HTP after my internist bugged me for the umpteenth time about taking an antidepressant. This time, though, she told me about the need for adequate serotonin levels in the brain for the brain to function properly and how depression, anxiety and stress lower the body's ability to produce serontonin. Since stress is my greatest seizure trigger, that made sense to me so I started to look for a natural alternative to an SSRI. 5-HTP has been great and, if it does prevent depression caused by the brain's inability to function due to a lack of serotonin, it should certainly help me as a seizure preventative. > > > Just found out about this group on another site and am so glad to find > this place! I have grand mal and complex partials - gave up on the > drug routine in May 2000. Have achieved amazing control, using > vitamins and supplements (B complex, CoQ10, magnesium, taurine and > flaxseed oil). Instead of counting the time between seizures in days, > I now count in months and years. Been 13 months since the last one > and had been seizure free for almost 2 years before that. I was never > this seizure free on any of the drugs that I was given for more than > 20 years! It seemed though that my brain, in the effort to really > confound me, decided to get around the lack of seizures by throwing > panic/anxiety attacks at me. After a year of refusing to take an > antidepressant and using valium to treat the problem symptomatically, > I found a supplement called 5-HTP in Prescription for Nutritional > Healing. It was totally taken care of the panic attacks. I haven't > slept this soundly - dreamed this vividly - and felt this energized in > years. Glad to be here! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2005 Report Share Posted April 1, 2005 Grace - got the message that you were asking about my age and weight but now I can't figure out where it's posted. Oh well. Senior moment I guess. Anyway, I'm 52 and weigh 190 lbs. One thing about Depakote - the weight sure comes on fast but it never goes away! > > > > > > Just found out about this group on another site and am so glad to > find > > this place! I have grand mal and complex partials - gave up on > the > > drug routine in May 2000. Have achieved amazing control, using > > vitamins and supplements (B complex, CoQ10, magnesium, taurine and > > flaxseed oil). Instead of counting the time between seizures in > days, > > I now count in months and years. Been 13 months since the last > one > > and had been seizure free for almost 2 years before that. I was > never > > this seizure free on any of the drugs that I was given for more > than > > 20 years! It seemed though that my brain, in the effort to really > > confound me, decided to get around the lack of seizures by > throwing > > panic/anxiety attacks at me. After a year of refusing to take an > > antidepressant and using valium to treat the problem > symptomatically, > > I found a supplement called 5-HTP in Prescription for Nutritional > > Healing. It was totally taken care of the panic attacks. I > haven't > > slept this soundly - dreamed this vividly - and felt this > energized in > > years. Glad to be here! > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2005 Report Share Posted April 1, 2005 Thank you very much for posting and for all the information! Leave it to those meds, they either make you gain weight, lose weight or make you crazy (lol). Thanks again! Grace Cathie <lindybuzz@...> wrote: Grace - got the message that you were asking about my age and weight but now I can't figure out where it's posted. Oh well. Senior moment I guess. Anyway, I'm 52 and weigh 190 lbs. One thing about Depakote - the weight sure comes on fast but it never goes away! > > > > > > Just found out about this group on another site and am so glad to > find > > this place! I have grand mal and complex partials - gave up on > the > > drug routine in May 2000. Have achieved amazing control, using > > vitamins and supplements (B complex, CoQ10, magnesium, taurine and > > flaxseed oil). Instead of counting the time between seizures in > days, > > I now count in months and years. Been 13 months since the last > one > > and had been seizure free for almost 2 years before that. I was > never > > this seizure free on any of the drugs that I was given for more > than > > 20 years! It seemed though that my brain, in the effort to really > > confound me, decided to get around the lack of seizures by > throwing > > panic/anxiety attacks at me. After a year of refusing to take an > > antidepressant and using valium to treat the problem > symptomatically, > > I found a supplement called 5-HTP in Prescription for Nutritional > > Healing. It was totally taken care of the panic attacks. I > haven't > > slept this soundly - dreamed this vividly - and felt this > energized in > > years. Glad to be here! > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2005 Report Share Posted April 1, 2005 In a message dated 4/2/05 7:19:17 AM Eastern Standard Time, writes: > From: " Cathie " <lindybuzz@...> > Subject: Re: New to group > > > Grace - got the message that you were asking about my age and weight > but now I can't figure out where it's posted. Oh well. Senior > moment I guess. Anyway, I'm 52 and weigh 190 lbs. One thing about > Depakote - the weight sure comes on fast but it never goes away! > > .. ..>>> Oh, yes it does! My son gained about 80 pounds on Depakote..... and now has lost most of it. How? Simple. Reduced Depakote from 1500 mg to 1250 mg per day Reduced grains and limited grains to whole grains only.... absolutely NO refined flour. Increased omega-3 fatty acids to 9 grams per day Added virgin coconut oil to about 4 T per day. This not only helped the weight come off.... important as his biomom died of complications of diabetes at a young age... but also was part of the plan to reduce seizure frequency. He was also on 400 or 500 mg Lamictal at the time. No longer on Lamictal and Depakote now at 1000 mg per day. Works for him. Hope this helps CHarlie's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 80 lbs beats me by quite a bit. I gained 40 lbs very rapidly while on Depakote. What kills me is that the neuro told me to let him know ASAP if I started to LOSE weight but never said a word about weight gain. I stopped the Depakote all together almost 5 years ago but the weight is still with me. Every time I've tried to lose weight, I get such a tremendous headache that I worry that I'm doing more harm than good. Refined starches and sugars haven't been a part of my diet for years and I take 2000 mgs of flaxseed oil/day for the omega-3 fatty acids. Haven't tried coconut oil - I stay away from all oils except olive and, of course, flaxseed. Maybe your son's experience was different than mine because of age. In , foxhillers@a... wrote: > In a message dated 4/2/05 7:19:17 AM Eastern Standard Time, > writes: > > > From: " Cathie " <lindybuzz@h...> > > Subject: Re: New to group > > > > > > Grace - got the message that you were asking about my age and weight > > but now I can't figure out where it's posted. Oh well. Senior > > moment I guess. Anyway, I'm 52 and weigh 190 lbs. One thing about > > Depakote - the weight sure comes on fast but it never goes away! > > > > > > . > .>>> Oh, yes it does! My son gained about 80 pounds on Depakote..... and now > has lost most of it. > > How? > > Simple. > > Reduced Depakote from 1500 mg to 1250 mg per day > Reduced grains and limited grains to whole grains only.... absolutely NO > refined flour. > Increased omega-3 fatty acids to 9 grams per day > Added virgin coconut oil to about 4 T per day. > > This not only helped the weight come off.... important as his biomom died of > complications of diabetes at a young age... but also was part of the plan to > reduce seizure frequency. > > He was also on 400 or 500 mg Lamictal at the time. No longer on Lamictal and > Depakote now at 1000 mg per day. > > Works for him. > > Hope this helps > CHarlie's Mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 Congrats!!! May I ask what drugs you were taking? Weaning process? twodogsnahorse <lindybuzz@...> wrote: Just found out about this group on another site and am so glad to find this place! I have grand mal and complex partials - gave up on the drug routine in May 2000. Have achieved amazing control, using vitamins and supplements (B complex, CoQ10, magnesium, taurine and flaxseed oil). Instead of counting the time between seizures in days, I now count in months and years. Been 13 months since the last one and had been seizure free for almost 2 years before that. I was never this seizure free on any of the drugs that I was given for more than 20 years! It seemed though that my brain, in the effort to really confound me, decided to get around the lack of seizures by throwing panic/anxiety attacks at me. After a year of refusing to take an antidepressant and using valium to treat the problem symptomatically, I found a supplement called 5-HTP in Prescription for Nutritional Healing. It was totally taken care of the panic attacks. I haven't slept this soundly - dreamed this vividly - and felt this energized in years. Glad to be here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 I've been on Dilantin, phenobarbital (and the combo), Stelazine, Ativan, Mysoline and Depakote over the years - Depakote at the end. I'd been weaned on and off so many times over the years that I knew the process but, to be totally sure, I took twice as long (2 weeks between lowering the doses - 8 weeks all together). >From: Judles <judles50@...> >Reply- > >Subject: Re: [ ] New to group >Date: Mon, 4 Apr 2005 11:02:56 -0700 (PDT) > >Congrats!!! May I ask what drugs you were taking? Weaning process? > >twodogsnahorse <lindybuzz@...> wrote: > >Just found out about this group on another site and am so glad to find >this place! I have grand mal and complex partials - gave up on the >drug routine in May 2000. Have achieved amazing control, using >vitamins and supplements (B complex, CoQ10, magnesium, taurine and >flaxseed oil). Instead of counting the time between seizures in days, >I now count in months and years. Been 13 months since the last one >and had been seizure free for almost 2 years before that. I was never >this seizure free on any of the drugs that I was given for more than >20 years! It seemed though that my brain, in the effort to really >confound me, decided to get around the lack of seizures by throwing >panic/anxiety attacks at me. After a year of refusing to take an >antidepressant and using valium to treat the problem symptomatically, >I found a supplement called 5-HTP in Prescription for Nutritional >Healing. It was totally taken care of the panic attacks. I haven't >slept this soundly - dreamed this vividly - and felt this energized in >years. Glad to be here! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 Tim, welcome to the group. My name is rob, and i have had a couple of back surgeries. I dont know about spinal stenosis, but if it's an available treatment for them then i recommend aquatic pt. take care rob in va >From: " thahalibut " <thahalibut@...> >Reply-neck pain >neck pain >Subject: New to group >Date: Mon, 19 Sep 2005 20:15:26 -0000 > >Hi, > > My name is Tim & I joined the group because both my parents have >Spinal Stenosis & was hoping I could find any information that could >help them. One has it in the lower back & the other in the neck. We've >been to the doctors & I have done research on the net but I know these >groups can be very helpful. We are going to get physical therapy but >its not scheduled for a couple weeks I think. > >Can anyone suggest any physical therapy until we make it to our >appointment? Any suggestions from anyone with anything to do with >Spinal Stenosis would be great. Anything that can help avoid surgery >or worsening of this disorder would be greatly appreciated. > >Thanks > >Tim > > > _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 Tim, welcome to the group. My name is rob, and i have had a couple of back surgeries. I dont know about spinal stenosis, but if it's an available treatment for them then i recommend aquatic pt. take care rob in va >From: " thahalibut " <thahalibut@...> >Reply-neck pain >neck pain >Subject: New to group >Date: Mon, 19 Sep 2005 20:15:26 -0000 > >Hi, > > My name is Tim & I joined the group because both my parents have >Spinal Stenosis & was hoping I could find any information that could >help them. One has it in the lower back & the other in the neck. We've >been to the doctors & I have done research on the net but I know these >groups can be very helpful. We are going to get physical therapy but >its not scheduled for a couple weeks I think. > >Can anyone suggest any physical therapy until we make it to our >appointment? Any suggestions from anyone with anything to do with >Spinal Stenosis would be great. Anything that can help avoid surgery >or worsening of this disorder would be greatly appreciated. > >Thanks > >Tim > > > _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 Thanks rob. What exactly is aquatic pt? Tim > Tim, > welcome to the group. My name is rob, and i have had a couple of back > surgeries. I dont know about spinal stenosis, but if it's an available > treatment for them then i recommend aquatic pt. > take care > rob in va > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 Thanks rob. What exactly is aquatic pt? Tim > Tim, > welcome to the group. My name is rob, and i have had a couple of back > surgeries. I dont know about spinal stenosis, but if it's an available > treatment for them then i recommend aquatic pt. > take care > rob in va > > > Quote Link to comment Share on other sites More sharing options...
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