Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 When I use the term " meltdown " , is it to describe when my son falls apart emotionally. With my son, it can be crying (usually very loud wailing) and often includes running from the room or building, or perhaps falling to the floor. Often it includes raging in anger, and irrational outbursts.>>>> > > Lori, you are wrong, this is MY son's meltdown/outburst! lol > F > Now Now! You ALL know that is MY son's way of doing things! a PS AND my lil one learned early on to check the surface he was throwing himself down onto before doing it!!! Cracked me up. Hunter never thought that far ahead. lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 > When I use the term " meltdown " , is it to describe when my son > falls apart emotionally. With my son, it can be crying (usually very > loud wailing) and often includes running from the room or building, > or perhaps falling to the floor. Often it includes raging in anger, > and irrational outbursts.>>>> > > > > Lori, you are wrong, this is MY son's meltdown/outburst! lol > > F > > > Now Now! You ALL know that is MY son's way of doing things! > > a Ladies, ladies. Don't fight. You have to learn to S-H-A-R-E!!! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 > Ladies, ladies. Don't fight. You have to learn to S-H-A-R-E!!! > > Kathy Share...hmmm...is that a foreign word? lol. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2004 Report Share Posted December 24, 2004 Lori, Thank you so much for your post because you just helped me realize that I am not alone in feeling this way about the meds and about the doctors. I, too, am doing it very slowly and even though she's on very low doses, it will still take me awhile because I'd rather be safe than sorry and I am also finding out that the meds were not doing anything except increase her seizures, stop her from thinking on her own and made her hallucinate and act like a zombie. I actually see my beautiful daughter coming back to life. Now she's always telling me that she's happy. Thank God. Grace <lwm31@...> wrote: Dear Grace, My son was on Lamictal years ago and it increased his seizures to 18 a day!!!!!!!!!!!!!!!!!!!!!! He doesn't have 18 in 3 months. The neuro said it was highly unlikely that an AED would do that but take him off of it. The seizures went back to their normal pattern immediately. I HATE Lamictal. My son has been on Dilantin -- it caused a severe dystonic reaction in him and drug toxicity. He's also been on Topamax, Depakote, phenobarbital, and I think one other, but I can't remember it. They all made him dopey. I weaned my son off of all meds two years ago. I did it over a period of a year and a half without the neuro's consent because he said, and I quote, " He has to be on something. " Can you believe that? Even though he had these horrible side effects and they didn't control the seizures. I have no more respect for neuros. And this guy is supposed to be the best in the country for pediatric epileptology. My foot! That having been said, this is my opinion only. You follow your gut, girl. Once I started doing that, I slept a lot better, and had less anxiety. And no, weaning my son slowly off the meds did not cause an increase in his seizures, so that way I knew for sure they weren't helping him even one-half of a percent. I hope this helped. Lori > > > > I just finished taking to the eye doctor and I was told that she has rotational nystagmus and when I asked her what this was, she told me that it is when the eyes make rotating movements. Now, goes to the eye doctor once a year and I have never been told this and so when I got home, I went on the net and did a search on nystagmus and Lamictal and sure enough it is one of the side effects. When I asked the doc what it's doing to she said that it feels like the world is spinning or moving in rotating motion, this is crazy, another crazy side effect my daughter has had to endure because of these AEDs. I am so glad that I'm weaning her off of them. I feel she has done worse on these drugs and things just continue to get worse. I wish I had never put her on AEDs. My poor baby is developmentally delayed and is not able to tell me what she's feeling. I did notice that since she's been on Lamictal that whenever she does certain letters or numbers that she's > like stuck in a circular motion for example, whenever she writes the letter C she repeats the beginning part of the C over and over again until I stop her and then she'll continue with the rest of the letter. This has been very frustrating to watch and it also is what finally led me to the point where I told her neuro that I want her off of the meds. > > Has anyone had this happen or know of someone who had this happen to them and can you describe what it felt like. > > Thanks for your help! > > Grace > > > > When fear and worry test your faith and anxious thoughts assail, remember God is in control and He will never fail. > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Dear Grace, I am so happy for you. I will never (I know, never say never) put my son on those awful meds again. I find I have to follow my heart and gut. Best of luck to you and God bless. Lori - In , Grace <foxyfoxgrace@y...> wrote: > Lori, > > Thank you so much for your post because you just helped me realize that I am not alone in feeling this way about the meds and about the doctors. I, too, am doing it very slowly and even though she's on very low doses, it will still take me awhile because I'd rather be safe than sorry and I am also finding out that the meds were not doing anything except increase her seizures, stop her from thinking on her own and made her hallucinate and act like a zombie. I actually see my beautiful daughter coming back to life. Now she's always telling me that she's happy. Thank God. > > Grace > > <lwm31@h...> wrote: > > Dear Grace, > My son was on Lamictal years ago and it increased his seizures to 18 > a day!!!!!!!!!!!!!!!!!!!!!! He doesn't have 18 in 3 months. The > neuro said it was highly unlikely that an AED would do that but take > him off of it. The seizures went back to their normal pattern > immediately. I HATE Lamictal. My son has been on Dilantin -- it > caused a severe dystonic reaction in him and drug toxicity. He's > also been on Topamax, Depakote, phenobarbital, and I think one other, > but I can't remember it. They all made him dopey. I weaned my son > off of all meds two years ago. I did it over a period of a year and > a half without the neuro's consent because he said, and I quote, " He > has to be on something. " Can you believe that? Even though he had > these horrible side effects and they didn't control the seizures. I > have no more respect for neuros. And this guy is supposed to be the > best in the country for pediatric epileptology. My foot! That > having been said, this is my opinion only. You follow your gut, > girl. Once I started doing that, I slept a lot better, and had less > anxiety. And no, weaning my son slowly off the meds did not cause an > increase in his seizures, so that way I knew for sure they weren't > helping him even one-half of a percent. > I hope this helped. > Lori > > > > > > > > > I just finished taking to the eye doctor and I was told > that she has rotational nystagmus and when I asked her what this was, > she told me that it is when the eyes make rotating movements. Now, > goes to the eye doctor once a year and I have never been > told this and so when I got home, I went on the net and did a search > on nystagmus and Lamictal and sure enough it is one of the side > effects. When I asked the doc what it's doing to she said > that it feels like the world is spinning or moving in rotating > motion, this is crazy, another crazy side effect my daughter has had > to endure because of these AEDs. I am so glad that I'm weaning her > off of them. I feel she has done worse on these drugs and things > just continue to get worse. I wish I had never put her on AEDs. My > poor baby is developmentally delayed and is not able to tell me what > she's feeling. I did notice that since she's been on Lamictal that > whenever she does certain letters or numbers that she's > > like stuck in a circular motion for example, whenever she writes > the letter C she repeats the beginning part of the C over and over > again until I stop her and then she'll continue with the rest of the > letter. This has been very frustrating to watch and it also is what > finally led me to the point where I told her neuro that I want her > off of the meds. > > > > Has anyone had this happen or know of someone who had this happen > to them and can you describe what it felt like. > > > > Thanks for your help! > > > > Grace > > > > > > > > When fear and worry test your faith and anxious thoughts assail, > remember God is in control and He will never fail. > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Lori, I will also never say never because you don't know what you'll do under desperate circumstances, but once she's off of them, I will do my very best and everything possible to try to keep her off of them. I am also following my heart and this feels right. So far, her seizures have not increased, if anything, they are the same as on the meds, but I will continue praying that they at least go back to the way they were before the meds. Wha type of seizures does your son have? Thanks alot for all your help and encouraging words, they really mean alot to me specially right now as we go through this very scary journey but with God's help, we'll get through this as we have all other trials. Grace lwm311962 <lwm31@...> wrote: Dear Grace, I am so happy for you. I will never (I know, never say never) put my son on those awful meds again. I find I have to follow my heart and gut. Best of luck to you and God bless. Lori - In , Grace <foxyfoxgrace@y...> wrote: > Lori, > > Thank you so much for your post because you just helped me realize that I am not alone in feeling this way about the meds and about the doctors. I, too, am doing it very slowly and even though she's on very low doses, it will still take me awhile because I'd rather be safe than sorry and I am also finding out that the meds were not doing anything except increase her seizures, stop her from thinking on her own and made her hallucinate and act like a zombie. I actually see my beautiful daughter coming back to life. Now she's always telling me that she's happy. Thank God. > > Grace > > <lwm31@h...> wrote: > > Dear Grace, > My son was on Lamictal years ago and it increased his seizures to 18 > a day!!!!!!!!!!!!!!!!!!!!!! He doesn't have 18 in 3 months. The > neuro said it was highly unlikely that an AED would do that but take > him off of it. The seizures went back to their normal pattern > immediately. I HATE Lamictal. My son has been on Dilantin -- it > caused a severe dystonic reaction in him and drug toxicity. He's > also been on Topamax, Depakote, phenobarbital, and I think one other, > but I can't remember it. They all made him dopey. I weaned my son > off of all meds two years ago. I did it over a period of a year and > a half without the neuro's consent because he said, and I quote, " He > has to be on something. " Can you believe that? Even though he had > these horrible side effects and they didn't control the seizures. I > have no more respect for neuros. And this guy is supposed to be the > best in the country for pediatric epileptology. My foot! That > having been said, this is my opinion only. You follow your gut, > girl. Once I started doing that, I slept a lot better, and had less > anxiety. And no, weaning my son slowly off the meds did not cause an > increase in his seizures, so that way I knew for sure they weren't > helping him even one-half of a percent. > I hope this helped. > Lori > > > > > > > > > I just finished taking to the eye doctor and I was told > that she has rotational nystagmus and when I asked her what this was, > she told me that it is when the eyes make rotating movements. Now, > goes to the eye doctor once a year and I have never been > told this and so when I got home, I went on the net and did a search > on nystagmus and Lamictal and sure enough it is one of the side > effects. When I asked the doc what it's doing to she said > that it feels like the world is spinning or moving in rotating > motion, this is crazy, another crazy side effect my daughter has had > to endure because of these AEDs. I am so glad that I'm weaning her > off of them. I feel she has done worse on these drugs and things > just continue to get worse. I wish I had never put her on AEDs. My > poor baby is developmentally delayed and is not able to tell me what > she's feeling. I did notice that since she's been on Lamictal that > whenever she does certain letters or numbers that she's > > like stuck in a circular motion for example, whenever she writes > the letter C she repeats the beginning part of the C over and over > again until I stop her and then she'll continue with the rest of the > letter. This has been very frustrating to watch and it also is what > finally led me to the point where I told her neuro that I want her > off of the meds. > > > > Has anyone had this happen or know of someone who had this happen > to them and can you describe what it felt like. > > > > Thanks for your help! > > > > Grace > > > > > > > > When fear and worry test your faith and anxious thoughts assail, > remember God is in control and He will never fail. > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 Hi, Lori, Thanks for sharing your experience with Kiera and the glow bracelet. I'm glad things are settling down and her eyes are going to be fine. The ruined clothing and car seat spots are the least of it. These things are not just for Halloween. They are used to make all kinds of things used as party favors for kids all through the year. So your message is worth repeating. See? Things CAN happen! (We worrywort moms DID have something to worry about! LOL) Just glad this didn't turn out to be catastrophic and Lori was so quick to react in exactly the right way. ) Jackie Implanted - right ear - Oct.2002 - Nucleus 24/3G Reimplanted - right ear - Jan.2005 - Nucleus 24C/3G Implanted - left ear - Sept.2005 - Nucleus-Freedom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 In a message dated 11/19/2005 12:36:26 P.M. Eastern Standard Time, eric_s11050@... writes: please find a llmd and get tested by igenix...your dose is to low so you may not herx as that is what happened to me...it is very important to get an llmd as you will run in circles if you dont.. eric Good advice ..one thing I am realizing about these awful herxheimers reactions is that like you , if I don't have them I feel that I am not killing off this disease. NO PAIN NO GAIN as they say ! ;-) Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 Kat, While a Herx reaction is generally a good sign that you are killing the Lyme it doesn't happen with everyone. Another unique thing about this disease; we all recover differently! I have been on abx for 11 months and have gone from having severe Lyme with many IgG positive bands (later stage antibodies) with over 20 severe Lyme symptoms (neurological, psychological, cardialogical, gastro-intestional, orthopedic, anxiety attacks etc...) to having almost 0 symptoms and a second blood test come back totally negative for Lyme without ever getting a Herx reaction. My wife and I have never had a Herx reaction but we know that we are killing the Lyme. I only post this to understand that even if you are not experiencing a Herx reaction you may still be killing the Lyme and recovering. The way I judge my success with my treatment is to evaluate my symptoms every 3 months (write them down on a list), if my symptoms are not getting better I talk to my LLMD about my treatment options. Be well, > > > In a message dated 11/19/2005 12:36:26 P.M. Eastern Standard Time, > eric_s11050@y... writes: > > please find a llmd and get tested by igenix...your dose is to low so > you may not herx as that is what happened to me...it is very important > to get an llmd as you will run in circles if you dont.. > eric > > > > Good advice ..one thing I am realizing about these awful herxheimers > reactions is that like you , if I don't have them I feel that I am not killing off > this disease. NO PAIN NO GAIN as they say ! ;-) Kat > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Lori...I am on enbrel and LOVE it! I feel so good on this. I am also on 5 mg prednisone that i've been on for quite a few years now. The enbrel has helped me tremendously and I've had no problems with it since starting in 2005. I'm on my way out the door but wanted to respond. The side effects and risks are low but I would still take enbrel because it has really helped me. Good luck...my rheumy said when the enbrel stops working..hope it doesnt then he is thinking Orencia for me. Hugs..a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Thank you so much for your message. I have been battling this alone for so long. Don't know anyone else in my community with this. I'm sure there are many. I tend to feel a little isolated. I needed a ray of hope today and you gave it to me. Much appreciated, Lori > > Lori...I am on enbrel and LOVE it! I feel so good on this. I am also on 5 > mg prednisone that i've been on for quite a few years now. The enbrel has > helped me tremendously and I've had no problems with it since starting in > 2005. > > I'm on my way out the door but wanted to respond. The side effects and > risks are low but I would still take enbrel because it has really helped me. > > Good luck...my rheumy said when the enbrel stops working..hope it doesnt > then he is thinking Orencia for me. > > Hugs..a > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 There are many potential reasons for a child to have digestive issues/have growth or hair or skin issues etc and a good naturopath can determine what steps including the proper sequence and dosages or supplements will make the best difference. Iodine gave me horrible detox reactions before I built up my system....itching, rashes, etc. I can use iodine now especially since my food sensitivities have been addressed and I have changed how I live my life. My antibodies and TSH are both down. I do supplement with selenium and other supplements. I made rapid progress with my naturopath's program compared to my hit-and-miss internet gleanings. I do not wish to disparage this site....I use it for support and info, but my issues were more complex and needed careful evaluation and attention with a sequential program.Joan Joan,Just curious, why do you think that iodine would complicate the issue?Linn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2011 Report Share Posted February 12, 2011 Joan wrote: > they are trained in functional medicine and understand nutribiotics so > you don't waste money on ineffective solutions and things like iodine > which may complicate the issue. Iodine deficiency is what complicates issues, not iodine supplementation. This kind of statement does not help people who are here to learn about iodine. Our lack of iodine is a root cause of the epidemic of ill health. Without optimal thyroid function, which is the engine of the body's metabolism, all other functions are impaired. Without iodine in the reproductive organs, our hormonal balance can never be correct and we will have imbalances and infertility. Without iodine in the skin, the function of the skin as a barrier to disease is impaired and the skin is vulnerable itself to disease. Without iodine in each of the cells, which only occurs when the rest of the body has sufficient iodine for its functions, the body cannot stop cancer. That's what we're here to learn about. -- ~~~ There is no way to peace; peace is the way ~~~~ --A.J. Muste Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2011 Report Share Posted February 12, 2011 Hi Joan, I responded to your statement before I saw your explanation. Yes, it's ideal that people have guidance for getting well, but that's not always possible. For one thing, many people cannot afford to pay for it, and second, they may not have a competent practitioner near enough to them. Iodine competent practitioners are few and far between. If iodine gives people detox reactions, there is clear information here about how to work on one's detox pathways to improve that. I still disagree that a blanket statement that iodine complicates matters is a useful statement. -- >There are many potential reasons for a child to have digestive issues/have >growth or hair or skin issues etc and a good naturopath can determine what >steps including the proper sequence and dosages or supplements will make >the best difference. Iodine gave me horrible detox reactions before I >built up my system....itching, rashes, etc. > >I can use iodine now especially since my food sensitivities have been >addressed and I have changed how I live my life. My antibodies and TSH >are both down. I do supplement with selenium and other supplements. > >I made rapid progress with my naturopath's program compared to my >hit-and-miss internet gleanings. I do not wish to disparage this >site....I use it for support and info, but my issues were more complex and >needed careful evaluation and attention with a sequential program. > >Joan > > >---------- > > > >Joan, > >Just curious, why do you think that iodine would complicate the issue? > >Linn ~~~ There is no way to peace; peace is the way ~~~~ --A.J. Muste Quote Link to comment Share on other sites More sharing options...
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