Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 Ok nurses giving wrong info out of that office is getting bad. I'm sorry to hear about the response (or lack of). They would pretty much want some response across the board before considering stopping infusions. I was under the impression that Dr. K had one or two others but Sue (Accredo nurse who does all of Dr. K's patients) can tell me tomorrow when I talk to her about something else. Being off since April probably would need to start back with the larger IV doses and then transition to subq in order to build the troughs back up. Macey did the pneumovax after no response to the Prevnar. Seems to be something they do as a back up to just make sure they haven't missed something. our 12 yr old NPK (love that abreviation) is being tested this week after having 3 pneumonias this year and hitting puberty also. We're hopeful. Ursula Holleman mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 Ok nurses giving wrong info out of that office is getting bad. I'm sorry to hear about the response (or lack of). They would pretty much want some response across the board before considering stopping infusions. I was under the impression that Dr. K had one or two others but Sue (Accredo nurse who does all of Dr. K's patients) can tell me tomorrow when I talk to her about something else. Being off since April probably would need to start back with the larger IV doses and then transition to subq in order to build the troughs back up. Macey did the pneumovax after no response to the Prevnar. Seems to be something they do as a back up to just make sure they haven't missed something. our 12 yr old NPK (love that abreviation) is being tested this week after having 3 pneumonias this year and hitting puberty also. We're hopeful. Ursula Holleman mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 What do you mean some response across the board?? She responded somewhat to all of them according to phillips, but did not have protective levels but to 4. I am going to get my hands on that lab report Thursday. I will post the exact results. Jerri rsula Holleman <uahollem1@...> wrote: Ok nurses giving wrong info out of that office is getting bad. I'm sorry to hear about the response (or lack of). They would pretty much want some response across the board before considering stopping infusions. I was under the impression that Dr. K had one or two others but Sue (Accredo nurse who does all of Dr. K's patients) can tell me tomorrow when I talk to her about something else. Being off since April probably would need to start back with the larger IV doses and then transition to subq in order to build the troughs back up. Macey did the pneumovax after no response to the Prevnar. Seems to be something they do as a back up to just make sure they haven't missed something. our 12 yr old NPK (love that abreviation) is being tested this week after having 3 pneumonias this year and hitting puberty also. We're hopeful. Ursula Holleman mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 What do you mean some response across the board?? She responded somewhat to all of them according to phillips, but did not have protective levels but to 4. I am going to get my hands on that lab report Thursday. I will post the exact results. Jerri rsula Holleman <uahollem1@...> wrote: Ok nurses giving wrong info out of that office is getting bad. I'm sorry to hear about the response (or lack of). They would pretty much want some response across the board before considering stopping infusions. I was under the impression that Dr. K had one or two others but Sue (Accredo nurse who does all of Dr. K's patients) can tell me tomorrow when I talk to her about something else. Being off since April probably would need to start back with the larger IV doses and then transition to subq in order to build the troughs back up. Macey did the pneumovax after no response to the Prevnar. Seems to be something they do as a back up to just make sure they haven't missed something. our 12 yr old NPK (love that abreviation) is being tested this week after having 3 pneumonias this year and hitting puberty also. We're hopeful. Ursula Holleman mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 I meant the protective levels. But, some doctors consider response either an amount over a certain number or it could be an amount 3 or 4 times the pre-vacination. Ursula Holleman mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 I meant the protective levels. But, some doctors consider response either an amount over a certain number or it could be an amount 3 or 4 times the pre-vacination. Ursula Holleman mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 I’m genotype 1 & did tx thru 2004 & I have 2 years SVR now. It was a tough year, but worth it to be here telling you that now. It takes heart (like Del said) and determination. There were times when I wanted to give up, but I wouldn’t allow it. There was too much at stake. My opinion is for anyone whose doctor will allow it to do tx as early as possible. I didn’t do anything but lay on the couch or go to bed after work. De Tx Stats Hi everyone, It's Jerri from So Cal. As I read all of the emails I am starting to get discouraged. Has many of the treatments been successful. I am genotype 1. In my 7th week and can barely work two days a week right now. I keep hopeing that it will get better but I don't know. I had to pick a new Internest and unfortunately I think that he is 89 years old. He has not equipment in his office not even an oxygen level reader. I guess I will have to do the 50 mile drive to my liver doctor for the test. Maybe oxygen will be the key to my low energy level. Anyone have any stats on the percentage of people that start treatment and actually finish it? Also any stats on of the people who finish there 48 weeks how many relapse and have to go back into treatment? Cause it is sounding to me like the odds aren't very good. Wondering if I should wait and see if some new treatment comes out that is better. Maybe I am just tired. I did work today so that is something. I am really fighting to stay off of disability. Keep in touch as me alone with my thoughts is a dangerous place to be in. I don't know how many of you may be in a 12 step program but I turned 13 years clean and sober on January 2nd. Was looking forward to being a bratty teanager but have turned into a whiney one instead. 47 days down and 289 to go YOO HOO. Hugs to all, Jerri Neely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Jerri, that’s great news! Hang in there & keep up the good work. We’re here whenever you feel like jumping in. Say hi every now & then so we don’t worry. /De Back from the doctors!!! Hi everyone, It's been awhile since I posted. I have been really fatigued and although have been reading the messages I wasn't up to contibuting much. Good news. I just returned from my liver doctor and according to my latest labs I have a ZERO viral load. Now he says it is time to start my treatment (I told him that I thought that I had been doing it for the past 6 months). He said that now we can start counting the time. As of today I have 12 more months of treatment. I am so grateful that I have made it over this hurdle. I know that I still have more to go but one down!!!!!!!! Hope all is well with everyone and know that I keep you all in my prayers. Thanks for listening, Jerri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Great news! Congratulations.. Hugs Motley <dmotley@...> wrote: Jerri, that’s great news! Hang in there & keep up the good work. We’re here whenever you feel like jumping in. Say hi every now & then so we don’t worry. /De -----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of Jerri NeelySent: Wednesday, June 06, 2007 5:38 PMHepatitis CSupportGroupForDummies Subject: Back from the doctors!!! Hi everyone,It's been awhile since I posted. I have been really fatigued and although have been reading the messages I wasn't up to contibuting much.Good news. I just returned from my liver doctor and according to my latest labs I have a ZERO viral load. Now he says it is time to start my treatment (I told him that I thought that I had been doing it for the past 6 months). He said that now we can start counting the time. As of today I have 12 more months of treatment. I am so grateful that I have made it over this hurdle. I know that I still have more to go but one down!!!!!!!!Hope all is well with everyone and know that I keep you all in my prayers.Thanks for listening,Jerri Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Wonderful Jerri, I am so happy for you. hugs wwVickie Gray <onelildeltagirl@...> wrote: Great news! Congratulations.. Hugs Motley <dmotleybellsouth (DOT) net> wrote: Jerri, that’s great news! Hang in there & keep up the good work. We’re here whenever you feel like jumping in. Say hi every now & then so we don’t worry. /De -----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of Jerri NeelySent: Wednesday, June 06, 2007 5:38 PMHepatitis CSupportGroupForDummies Subject: Back from the doctors!!! Hi everyone,It's been awhile since I posted. I have been really fatigued and although have been reading the messages I wasn't up to contibuting much.Good news. I just returned from my liver doctor and according to my latest labs I have a ZERO viral load. Now he says it is time to start my treatment (I told him that I thought that I had been doing it for the past 6 months). He said that now we can start counting the time. As of today I have 12 more months of treatment. I am so grateful that I have made it over this hurdle. I know that I still have more to go but one down!!!!!!!!Hope all is well with everyone and know that I keep you all in my prayers.Thanks for listening,Jerri Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Jerri, Are you the Jerri that lives close to Mariposa? Debi Re: Re: problems with " humping " Thank you so much for this. It is so helpful to hear what I know my son is going through also. If I can't get other people to understand what he is going through at least I can and help him navigate this through his life as best he can. I'm sooo sorry your family reacted the way they did to you. Thank you for helping us not to. Jerri > > Hello- > > I saw this topic and I just had to comment. Since it is a fairly > taboo subject I am glad to see others bring it up. > > Looking back over the years I've had varying degrees of what I'm > positive is the 'Neuroimmune' dysfunction throughout my life. > > I am 26 now (male) and I can actually relate with some of the things > you are discussing here on the board. > > While I can't speak directly for your children and say this is 'also' > the case with them I can explain from my own point of view that I hope > might shed some 'potential' light on this subject. > > I've struggled throughout my entire life with what I now realize is > likely the Neuroimmune dysfunction. I was diagnosed via NeuroSPECT > scan at age 24, however; I can remember vividly having difficulty all > the way back to four years old. > > I hadn't begun kindergarten yet, but I remember being preoccupied with > sexual stimuli. However- contrary to what was believed by my mother > at the time- it didn't really 'occur' out of a 'sexual urge' as much > as I found it eased the pain I frequently found myself in. It was > calming. It seemed to be a temporary band-aid to the incredible pain > and unknown 'internal unease' I was feeling. I would complain a lot, > cry about things, have stomach aches very frequently, and was just > generally in a lot of emotional, psychological, and physical pain. > Someone caught me stimulating myself who then told my mother and > father about it. I wasn't even five years old yet, but my mother > became very angry about it. I remember she was even so disgusted by > it she wouldn't even talk to me for what seemed like quite a while. I > remember her telling me that it was 'yucky,' that I DO NOT do that, > that 'Heavenly Father' does NOT like that, and she essentially > wouldn't even talk to me for a while after it. I remember being VERY > UPSET, and tried to follow her to get reassurance that she wasn't > going to leave me or something- I tried pulling on her arm, and tried > to get her to 'acknowledge' me... she just abruptly pulled away > angrily with a great disgust telling me to 'STOP'. I remember crying > over it. I TRULY > and honestly was thinking my Mother and Father didn't love me > anymore. She also did it in front of my four other siblings who then > teased me relentlessly about it for well over a decade after. I was > considered 'gross' by a lot of people in the family. (I come from an > extremely religious background.) > > For me this was a TRULY life changing event for me. > > So I FIRST want to applaud all of you for handling this delicately- > first and foremost. 'I' personally have appreciation for you all not > over-reacting with this because I can ASSURE you- over-reacting can > cause MUCH, MUCH more damage than any act they are performing. > > While I can't speak for any of your children directly I DO KNOW that > for me it was done because I was in this 'vague' unrelenting pain and > discomfort on all levels. I noticed some times and days were worse > than others. I often felt like my 'insides' or central nervous system > was INCREDIBLY over activated. If any of you have ever touched a 9 volt > battery to your tongue you know what that 'tingle' and shock feels > like. Well- the ongoing feeling felt like I had 'that' type of > feeling throughout the base of my brain, spine and nerves most of the > time. It was INCREDIBLY painful and uncomfortable. My parents were > troubled because I would cry a lot, have tantrums, not do well in > school, had a lot of trouble learning- and just generally HATED > school. I would bawl my eyes out not to have to go- simply because I > was in an enormous amount of pain and discomfort. > > The troubling thing for me was this. After being 'caught' > humping/sexually stimulating myself, I noticed I continued to do it. > While at that point I now realized (in a young child's mind) that if I > was caught doing anything of that nature I would essentially lose my > parents, and I would essentially go to hell and be stuck with the > internal torment and pain/discomfort I was already experiencing for > all of eternity. (Dramatic, perhaps but it was VERY real in my mind.) > However- I want to point out that I did not continue the sexual > stimulation because I was getting a real 'hedonistic' thrill out of > it, but rather found it dramatically eased the internal pain I was > experiencing and seemed to 'quite' down the 'electrical volt-like' > sensations throughout my central nervous system. I however didn't > know how to explain that I was in pain (it didn't make sense), I would > essentially just cry a > lot, and have angry outbursts. My parents had me start seeing the > school's psych. counselor in Kindergarten. They never were able to > 'distinguish' what was wrong with me. On top of that I consistently > had so much anxiety and such over active nerves I felt like I had to > urinate all the time. I would complain to my mother, she would take > me to the restroom and I had nothing to go because my bladder was empty. > > I was taken to the doctor and tested for a bladder infection- but that > came back negative. The doctor just wrote it off by telling my mother > it was just 'nerves.' > > To make a long story short this theme continued throughout my ENTIRE > life. I believe I've seen well over a dozen counselors, been on 27 > separate medications, had tried nearly every treatment available > (except E.C.T.). I have even attempted suicide, and been in a > psych-ward twice. (I was the one that placed myself in the > psych-ward.) I'm not 'insane' I just didn't have any answers! > > I actually read one of Dr. Amen's books talking about SPECT scans so I > was in pursuit of the scan when I came down with an unknown virus that > I got incredibly sick from. I had, had periods of severe fatigue in > the past, but nothing permanent. After the virus in 2002, I've had > very bad fatigue, and brain fog ever since- on top of the depression > etc. It just exacerbated all the problems I had previous to its > onset. I eventually > got in a position to get the NeuroSPECT scan and that is when they > came back showing many problems, but specifically a lot of > hypo-perfusion throughout my entire brain. I never abused drugs- so > we were able to rule out damage done from 'substance' abuse, which > essentially left us with a 'Neuroimmunolgical' process taking place- > that was in 2006. > > I look back now and things seem to make much more sense than they ever > had before. I have known from the time I was a little child that all > of my sexual stimulating was done as a 'therapeutic' behavior to try > to address the internal pain/over stimulation I was experiencing- but > I never could understand why I was in so much pain, while nobody else > experienced the same thing. For two decades it seemed like the volume > on all my senses was turned WAY up. Sexual stimulating temporarily > helped turn the volume down a little bit. (I'm assuming it is because > of the endorphins (natural pain killers).) > > Looking back I have realized that the 'over excitation' I've > experienced within my central nervous system always seemed to be > worsened when I was exposed to dust, dirt, allergens, pet dander and > fur, as well as other things. I've also realized overtime that I am > EXTREMELY sensitive to even the slightest of fumes from paint, > cleaning products, varnishes, new carpet, car pollution, etc. When > these things affect me, I get the similar 'old' feelings of my central > nervous system being violently over stimulated (just like the 9 volt > battery to the tongue). When I avoid them it is amazing how calm and > clear headed I find myself. I am emotionally balanced and I am about > symptom free. > > I do PROFOUNDLY better when I avoid and/or limit my exposure to these > things. The effect they have on me is so dramatic it requires being > affected by it personally to fully understand. If a room has been > recently > pained (and I don't even know it) it will often times wind up causing > me to become so exhausted and ill from it I'm laid in bed for days on > end. > > I can't say 'my' experiences are the same as your children's but if > they are anything like me, I have realized I don't do a lot better if > I have not removed a lot of the items listed above from my environment > in addition to doing everything else in the protocol. > > I hope some of this is helpful... > > Thanks, > > > > > > > > > > > > > > Hello, > > > > > > > > > > We were wondering if anyone has had problems with > > > > their children wanting > > > > > to " hump " things. We have been trying to > > > > break our three year old from > > > > > it but it has been tough. ABA therapy has helped some > > > > but�she she still > > > > > has a compulsion to do it. Any suggestions? ? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Yes I am, how did you know? Jerri > > Jerri, > Are you the Jerri that lives close to Mariposa? > > Debi > > Re: Re: problems with " humping " > > Thank you so much for this. It is so helpful to hear what I know my son > is going through also. If I can't get other people to understand what he > is going through at least I can and help him navigate this through his > life as best he can. I'm sooo sorry your family reacted the way they did > to you. Thank you for helping us not to. Jerri > > > > Hello- > > > > I saw this topic and I just had to comment. Since it is a fairly > > taboo subject I am glad to see others bring it up. > > > > Looking back over the years I've had varying degrees of what I'm > > positive is the 'Neuroimmune' dysfunction throughout my life. > > > > I am 26 now (male) and I can actually relate with some of the things > > you are discussing here on the board. > > > > While I can't speak directly for your children and say this is 'also' > > the case with them I can explain from my own point of view that I hope > > might shed some 'potential' light on this subject. > > > > I've struggled throughout my entire life with what I now realize is > > likely the Neuroimmune dysfunction. I was diagnosed via NeuroSPECT > > scan at age 24, however; I can remember vividly having difficulty all > > the way back to four years old. > > > > I hadn't begun kindergarten yet, but I remember being preoccupied with > > sexual stimuli. However- contrary to what was believed by my mother > > at the time- it didn't really 'occur' out of a 'sexual urge' as much > > as I found it eased the pain I frequently found myself in. It was > > calming. It seemed to be a temporary band-aid to the incredible pain > > and unknown 'internal unease' I was feeling. I would complain a lot, > > cry about things, have stomach aches very frequently, and was just > > generally in a lot of emotional, psychological, and physical pain. > > Someone caught me stimulating myself who then told my mother and > > father about it. I wasn't even five years old yet, but my mother > > became very angry about it. I remember she was even so disgusted by > > it she wouldn't even talk to me for what seemed like quite a while. I > > remember her telling me that it was 'yucky,' that I DO NOT do that, > > that 'Heavenly Father' does NOT like that, and she essentially > > wouldn't even talk to me for a while after it. I remember being VERY > > UPSET, and tried to follow her to get reassurance that she wasn't > > going to leave me or something- I tried pulling on her arm, and tried > > to get her to 'acknowledge' me... she just abruptly pulled away > > angrily with a great disgust telling me to 'STOP'. I remember crying > > over it. I TRULY > > and honestly was thinking my Mother and Father didn't love me > > anymore. She also did it in front of my four other siblings who then > > teased me relentlessly about it for well over a decade after. I was > > considered 'gross' by a lot of people in the family. (I come from an > > extremely religious background.) > > > > For me this was a TRULY life changing event for me. > > > > So I FIRST want to applaud all of you for handling this delicately- > > first and foremost. 'I' personally have appreciation for you all not > > over-reacting with this because I can ASSURE you- over-reacting can > > cause MUCH, MUCH more damage than any act they are performing. > > > > While I can't speak for any of your children directly I DO KNOW that > > for me it was done because I was in this 'vague' unrelenting pain and > > discomfort on all levels. I noticed some times and days were worse > > than others. I often felt like my 'insides' or central nervous system > > was INCREDIBLY over activated. If any of you have ever touched a 9 volt > > battery to your tongue you know what that 'tingle' and shock feels > > like. Well- the ongoing feeling felt like I had 'that' type of > > feeling throughout the base of my brain, spine and nerves most of the > > time. It was INCREDIBLY painful and uncomfortable. My parents were > > troubled because I would cry a lot, have tantrums, not do well in > > school, had a lot of trouble learning- and just generally HATED > > school. I would bawl my eyes out not to have to go- simply because I > > was in an enormous amount of pain and discomfort. > > > > The troubling thing for me was this. After being 'caught' > > humping/sexually stimulating myself, I noticed I continued to do it. > > While at that point I now realized (in a young child's mind) that if I > > was caught doing anything of that nature I would essentially lose my > > parents, and I would essentially go to hell and be stuck with the > > internal torment and pain/discomfort I was already experiencing for > > all of eternity. (Dramatic, perhaps but it was VERY real in my mind.) > > However- I want to point out that I did not continue the sexual > > stimulation because I was getting a real 'hedonistic' thrill out of > > it, but rather found it dramatically eased the internal pain I was > > experiencing and seemed to 'quite' down the 'electrical volt-like' > > sensations throughout my central nervous system. I however didn't > > know how to explain that I was in pain (it didn't make sense), I would > > essentially just cry a > > lot, and have angry outbursts. My parents had me start seeing the > > school's psych. counselor in Kindergarten. They never were able to > > 'distinguish' what was wrong with me. On top of that I consistently > > had so much anxiety and such over active nerves I felt like I had to > > urinate all the time. I would complain to my mother, she would take > > me to the restroom and I had nothing to go because my bladder was empty. > > > > I was taken to the doctor and tested for a bladder infection- but that > > came back negative. The doctor just wrote it off by telling my mother > > it was just 'nerves.' > > > > To make a long story short this theme continued throughout my ENTIRE > > life. I believe I've seen well over a dozen counselors, been on 27 > > separate medications, had tried nearly every treatment available > > (except E.C.T.). I have even attempted suicide, and been in a > > psych-ward twice. (I was the one that placed myself in the > > psych-ward.) I'm not 'insane' I just didn't have any answers! > > > > I actually read one of Dr. Amen's books talking about SPECT scans so I > > was in pursuit of the scan when I came down with an unknown virus that > > I got incredibly sick from. I had, had periods of severe fatigue in > > the past, but nothing permanent. After the virus in 2002, I've had > > very bad fatigue, and brain fog ever since- on top of the depression > > etc. It just exacerbated all the problems I had previous to its > > onset. I eventually > > got in a position to get the NeuroSPECT scan and that is when they > > came back showing many problems, but specifically a lot of > > hypo-perfusion throughout my entire brain. I never abused drugs- so > > we were able to rule out damage done from 'substance' abuse, which > > essentially left us with a 'Neuroimmunolgical' process taking place- > > that was in 2006. > > > > I look back now and things seem to make much more sense than they ever > > had before. I have known from the time I was a little child that all > > of my sexual stimulating was done as a 'therapeutic' behavior to try > > to address the internal pain/over stimulation I was experiencing- but > > I never could understand why I was in so much pain, while nobody else > > experienced the same thing. For two decades it seemed like the volume > > on all my senses was turned WAY up. Sexual stimulating temporarily > > helped turn the volume down a little bit. (I'm assuming it is because > > of the endorphins (natural pain killers).) > > > > Looking back I have realized that the 'over excitation' I've > > experienced within my central nervous system always seemed to be > > worsened when I was exposed to dust, dirt, allergens, pet dander and > > fur, as well as other things. I've also realized overtime that I am > > EXTREMELY sensitive to even the slightest of fumes from paint, > > cleaning products, varnishes, new carpet, car pollution, etc. When > > these things affect me, I get the similar 'old' feelings of my central > > nervous system being violently over stimulated (just like the 9 volt > > battery to the tongue). When I avoid them it is amazing how calm and > > clear headed I find myself. I am emotionally balanced and I am about > > symptom free. > > > > I do PROFOUNDLY better when I avoid and/or limit my exposure to these > > things. The effect they have on me is so dramatic it requires being > > affected by it personally to fully understand. If a room has been > > recently > > pained (and I don't even know it) it will often times wind up causing > > me to become so exhausted and ill from it I'm laid in bed for days on > > end. > > > > I can't say 'my' experiences are the same as your children's but if > > they are anything like me, I have realized I don't do a lot better if > > I have not removed a lot of the items listed above from my environment > > in addition to doing everything else in the protocol. > > > > I hope some of this is helpful... > > > > Thanks, > > > > > > > > > > > > > > > > > > > > Hello, > > > > > > > > > > > > We were wondering if anyone has had problems with > > > > > their children wanting > > > > > > to " hump " things. We have been trying to > > > > > break our three year old from > > > > > > it but it has been tough. ABA therapy has helped some > > > > > but�she she still > > > > > > has a compulsion to do it. Any suggestions? ? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 I would not have except someone gave me your number to call you. Becuase my son was just diagnosed with autism. I think it was Ruth. anyway. turns out that I knew you from Awana when your boys went. is it ok if i call you? Debi Re: Re: problems with " humping " > > Thank you so much for this. It is so helpful to hear what I know my son > is going through also. If I can't get other people to understand what he > is going through at least I can and help him navigate this through his > life as best he can. I'm sooo sorry your family reacted the way they did > to you. Thank you for helping us not to. Jerri > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.