Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 Hi Wonderer2one, hopefully! You will figure all this out. Your knowledge is excellent. Your numbers remind me pretty much of mine, back in 2000 my libido was already unacceptable, my T was 492 and my E2 was 56 (15-60 the range) I was told I was normal and left. I had come in to check up my gynecomastia! In 2002 finally, having the gynecomastia removed, I had a T level of 320 and also my E2 had settled down. Now I looked normal but I had to take up this fight for libido and against docs. Terrible! If interested in how the DIMs worked with me (started on 10th of Feb 2005), take a look at the thread DIM reports on the english part of my forum on... www.hypogonadismus.de Cheers! Lukas > > > > > > > > I think I'm about to make a breakthrough in my care and hope > > > others will read this > > > > post and offer any opinions. It's a bit lengthy, but please > bear > > > with me. > > > > > > > > First a little history…I've struggled with low libido for > almost 10 > > > years. Since, my > > > > mid-twenties; I'm now 34. Suffered in silence for the first 5 > > > years and then woke up > > > > and said to myself there is no way I can live the rest of my > life > > > like this and went to > > > > see my PCP. Counting him, I've been to 4 doctors and luckily > > > stumbled across this > > > > group. I've learned plenty here and the postings have > > > encouraged me to learn all I can > > > > and to take control of my situation. For that, I am grateful to > all > > > that take the time to > > > > share their learnings. From here on out, you can count on me > > > to share my > > > > experiences so others may benefit. > > > > > > > > I'm confidant that through the things I've learned here and > other > > > sources, that I know > > > > more about hypogonadism than ANY of the doctors I've seen. > > > (though, that might not > > > > be saying much) Been through many rounds of tests and the > > > readings usually come > > > > back in the low normal to mid-range. I seem to go though > > > periods of time where my > > > > libido goes from existent, but unacceptable, to totally > > > non-existent. The tests that > > > > follow are the latest and were during a period that I > > > experienced the highest sex drive > > > > I experience, but again far from acceptable. I'm confidant > these > > > numbers are as good > > > > as they get for me. > > > > > > > > The endocrinologist that ran the following tests didn't run all > > > the tests I suggested > > > > and I will push him on that on follow up. He's on vacation, so > I > > > requested his office > > > > mail me the test results. Here they are followed by my thoughts > > > on them. Any > > > > feedback would be much appreciated. > > > > > > > > TSH 4.41 Range .35 – 5.50 > > > > Total T 488 Range 300 – 1000 > > > > Free T 1.93 Range 1.30 – 4.00 > > > > Prolactin 9 Range 2 – 18 > > > > LH 3.2 Range 2.0 – 6.0 > > > > Insulin-Like Growth Factor 143 Range 114 – 492 > > > > Free T4 1.1 Range .9 – 1.8 > > > > Estradiol 52 Range 10 – 40 > > > > > > > > 1. Not familiar w/ significance of TSH. > > > > 2. Total T – 488 looks like a decent number, but considering > > > the upper range is 1000 > > > > and I'm only 188 points above the lower end, actually is rather > > > low. If I was 188 from > > > > the upper limit, I'd be at 812. I think that's where I should be > > > > 3. Free T – same comments as Total T. > > > > 4. Prolactin – seems ok. > > > > 5. LH – slightly below mid-range. My understanding is LH has > > > greater swings than > > > > FSH. Seems odd that FSH wasn't run as well. Why Drs don't > > > run ALL the tests is > > > > beyond me. Very frustrating! > > > > 6. Not familiar w/ significance of IGF. > > > > 7. Free T4 – another new one to me. > > > > 8. Estradiol – slightly elevated. > > > > > > > > Based on these results, it seems the first course of action is > to > > > get my E2 lowered. I'm > > > > thinking about Indolplex w/ DIM. Where should this numer be? > > > 25? How much DIM > > > > should I take and when? > > > > > > > > Once I get this lowered, I think I should go for another round > of > > > tests. I'd be curious > > > > how this affects my T and Free T. Any thoughts? > > > > > > > > If Estradiol comes back lowered, but my symptoms and T > > > aren't affected, I think HCG > > > > per Shippens protocol would be the next step. My endo hinted > > > at trying Androgel, but > > > > considering the 488 number it seems my testicles are capable > > > of making T, so why > > > > would I want to mess with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 Hi Wonderer2one, hopefully! You will figure all this out. Your knowledge is excellent. Your numbers remind me pretty much of mine, back in 2000 my libido was already unacceptable, my T was 492 and my E2 was 56 (15-60 the range) I was told I was normal and left. I had come in to check up my gynecomastia! In 2002 finally, having the gynecomastia removed, I had a T level of 320 and also my E2 had settled down. Now I looked normal but I had to take up this fight for libido and against docs. Terrible! If interested in how the DIMs worked with me (started on 10th of Feb 2005), take a look at the thread DIM reports on the english part of my forum on... www.hypogonadismus.de Cheers! Lukas > > > > > > > > I think I'm about to make a breakthrough in my care and hope > > > others will read this > > > > post and offer any opinions. It's a bit lengthy, but please > bear > > > with me. > > > > > > > > First a little history…I've struggled with low libido for > almost 10 > > > years. Since, my > > > > mid-twenties; I'm now 34. Suffered in silence for the first 5 > > > years and then woke up > > > > and said to myself there is no way I can live the rest of my > life > > > like this and went to > > > > see my PCP. Counting him, I've been to 4 doctors and luckily > > > stumbled across this > > > > group. I've learned plenty here and the postings have > > > encouraged me to learn all I can > > > > and to take control of my situation. For that, I am grateful to > all > > > that take the time to > > > > share their learnings. From here on out, you can count on me > > > to share my > > > > experiences so others may benefit. > > > > > > > > I'm confidant that through the things I've learned here and > other > > > sources, that I know > > > > more about hypogonadism than ANY of the doctors I've seen. > > > (though, that might not > > > > be saying much) Been through many rounds of tests and the > > > readings usually come > > > > back in the low normal to mid-range. I seem to go though > > > periods of time where my > > > > libido goes from existent, but unacceptable, to totally > > > non-existent. The tests that > > > > follow are the latest and were during a period that I > > > experienced the highest sex drive > > > > I experience, but again far from acceptable. I'm confidant > these > > > numbers are as good > > > > as they get for me. > > > > > > > > The endocrinologist that ran the following tests didn't run all > > > the tests I suggested > > > > and I will push him on that on follow up. He's on vacation, so > I > > > requested his office > > > > mail me the test results. Here they are followed by my thoughts > > > on them. Any > > > > feedback would be much appreciated. > > > > > > > > TSH 4.41 Range .35 – 5.50 > > > > Total T 488 Range 300 – 1000 > > > > Free T 1.93 Range 1.30 – 4.00 > > > > Prolactin 9 Range 2 – 18 > > > > LH 3.2 Range 2.0 – 6.0 > > > > Insulin-Like Growth Factor 143 Range 114 – 492 > > > > Free T4 1.1 Range .9 – 1.8 > > > > Estradiol 52 Range 10 – 40 > > > > > > > > 1. Not familiar w/ significance of TSH. > > > > 2. Total T – 488 looks like a decent number, but considering > > > the upper range is 1000 > > > > and I'm only 188 points above the lower end, actually is rather > > > low. If I was 188 from > > > > the upper limit, I'd be at 812. I think that's where I should be > > > > 3. Free T – same comments as Total T. > > > > 4. Prolactin – seems ok. > > > > 5. LH – slightly below mid-range. My understanding is LH has > > > greater swings than > > > > FSH. Seems odd that FSH wasn't run as well. Why Drs don't > > > run ALL the tests is > > > > beyond me. Very frustrating! > > > > 6. Not familiar w/ significance of IGF. > > > > 7. Free T4 – another new one to me. > > > > 8. Estradiol – slightly elevated. > > > > > > > > Based on these results, it seems the first course of action is > to > > > get my E2 lowered. I'm > > > > thinking about Indolplex w/ DIM. Where should this numer be? > > > 25? How much DIM > > > > should I take and when? > > > > > > > > Once I get this lowered, I think I should go for another round > of > > > tests. I'd be curious > > > > how this affects my T and Free T. Any thoughts? > > > > > > > > If Estradiol comes back lowered, but my symptoms and T > > > aren't affected, I think HCG > > > > per Shippens protocol would be the next step. My endo hinted > > > at trying Androgel, but > > > > considering the 488 number it seems my testicles are capable > > > of making T, so why > > > > would I want to mess with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 Hi Lukas Following your link at the end of this email, I visited and was really impressed by your new website: Really enjoyed your photos and diary. I look forward to February's diary entries! Yes, although your question about the GP and NHS was possibly rhetorical: Yes, each referral costs the GP practice and also medicines. Then an audit is main by the PCTs and DH on number and type of referrals both as statistics and costs. Hence NICE which investigates clinical practice and drug usage as to whether it is Nationally available or PCT dependent. This you will hear on the news as " postcode lottery " ie where you live might determine what you get. NICE approved HGrowth Hormone for all patients only last year. The current debate is with Alzheimer's and certain medications not being so cost effective and threats this will be an election issue in yesterday's press. I read about the table tennis and poetry but what do you do at Cambridge? Good luck with the liver consultant and your website! _________________________________________ Randle _________________________________________ Re: Please Help Hi Wonderer2one, hopefully! You will figure all this out. Your knowledge is excellent. Your numbers remind me pretty much of mine, back in 2000 my libido was already unacceptable, my T was 492 and my E2 was 56 (15-60 the range) I was told I was normal and left. I had come in to check up my gynecomastia! In 2002 finally, having the gynecomastia removed, I had a T level of 320 and also my E2 had settled down. Now I looked normal but I had to take up this fight for libido and against docs. Terrible! If interested in how the DIMs worked with me (started on 10th of Feb 2005), take a look at the thread DIM reports on the english part of my forum on... www.hypogonadismus.de Cheers! Lukas > > > > > > > > I think I'm about to make a breakthrough in my care and hope > > > others will read this > > > > post and offer any opinions. It's a bit lengthy, but please > bear > > > with me. > > > > > > > > First a little history.I've struggled with low libido for > almost 10 > > > years. Since, my > > > > mid-twenties; I'm now 34. Suffered in silence for the first 5 > > > years and then woke up > > > > and said to myself there is no way I can live the rest of my > life > > > like this and went to > > > > see my PCP. Counting him, I've been to 4 doctors and luckily > > > stumbled across this > > > > group. I've learned plenty here and the postings have > > > encouraged me to learn all I can > > > > and to take control of my situation. For that, I am grateful to > all > > > that take the time to > > > > share their learnings. From here on out, you can count on me > > > to share my > > > > experiences so others may benefit. > > > > > > > > I'm confidant that through the things I've learned here and > other > > > sources, that I know > > > > more about hypogonadism than ANY of the doctors I've seen. > > > (though, that might not > > > > be saying much) Been through many rounds of tests and the > > > readings usually come > > > > back in the low normal to mid-range. I seem to go though > > > periods of time where my > > > > libido goes from existent, but unacceptable, to totally > > > non-existent. The tests that > > > > follow are the latest and were during a period that I > > > experienced the highest sex drive > > > > I experience, but again far from acceptable. I'm confidant > these > > > numbers are as good > > > > as they get for me. > > > > > > > > The endocrinologist that ran the following tests didn't run all > > > the tests I suggested > > > > and I will push him on that on follow up. He's on vacation, so > I > > > requested his office > > > > mail me the test results. Here they are followed by my thoughts > > > on them. Any > > > > feedback would be much appreciated. > > > > > > > > TSH 4.41 Range .35 - 5.50 > > > > Total T 488 Range 300 - 1000 > > > > Free T 1.93 Range 1.30 - 4.00 > > > > Prolactin 9 Range 2 - 18 > > > > LH 3.2 Range 2.0 - 6.0 > > > > Insulin-Like Growth Factor 143 Range 114 - 492 > > > > Free T4 1.1 Range .9 - 1.8 > > > > Estradiol 52 Range 10 - 40 > > > > > > > > 1. Not familiar w/ significance of TSH. > > > > 2. Total T - 488 looks like a decent number, but considering > > > the upper range is 1000 > > > > and I'm only 188 points above the lower end, actually is rather > > > low. If I was 188 from > > > > the upper limit, I'd be at 812. I think that's where I should be > > > > 3. Free T - same comments as Total T. > > > > 4. Prolactin - seems ok. > > > > 5. LH - slightly below mid-range. My understanding is LH has > > > greater swings than > > > > FSH. Seems odd that FSH wasn't run as well. Why Drs don't > > > run ALL the tests is > > > > beyond me. Very frustrating! > > > > 6. Not familiar w/ significance of IGF. > > > > 7. Free T4 - another new one to me. > > > > 8. Estradiol - slightly elevated. > > > > > > > > Based on these results, it seems the first course of action is > to > > > get my E2 lowered. I'm > > > > thinking about Indolplex w/ DIM. Where should this numer be? > > > 25? How much DIM > > > > should I take and when? > > > > > > > > Once I get this lowered, I think I should go for another round > of > > > tests. I'd be curious > > > > how this affects my T and Free T. Any thoughts? > > > > > > > > If Estradiol comes back lowered, but my symptoms and T > > > aren't affected, I think HCG > > > > per Shippens protocol would be the next step. My endo hinted > > > at trying Androgel, but > > > > considering the 488 number it seems my testicles are capable > > > of making T, so why > > > > would I want to mess with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Has your pediatrician recognized the problem yet? What area do you live and we can recommend a treatment facility and/or doctors in your area. Natasha > > Hi, Im new to this group. I have noticed my sons head has become > pretty flat on the back right side. I have been looking into getting > him fitted for a band. I'm just not sure of the price. He does have > insurance with Kaiser. Regardless of the price, I will still get this > done. I just want to know what im looking at. Can some one please > help me? My son is 4 mos old now, and I want to get started as soon as > possible. What will my first step be? Please help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Hi and Welcome to the group. The first step is to talk to your pediatrician. You need an RX for the band/helmet. Your ped may refer you to a specialist. In the meantime you can begin aggressive repositioning. Keep him off the flat spot 24 hours a day. We have tons of tips. Go to the main board area and click on files or links then look for the repo folders. In the links section there is also a folder with links to assess severity. That may give you an idea of what you are dealing with. Have you noticed if your son prefers to always look one direction? A lot of kids with plagio have some tightness in the neck muscles which cause them to only look one way which can lead to the flat spot. The bands range from about $1500 - $3500 depending on brand. The key to good correction is an experienced ortho. Insurance sometimes covers and sometimes doesn't. We have tips for appealing denials. Where are you located? We may know of an ortho in your area that does free evaluations. mom to na DOC Grad South Carolina www.thefilyaws.com <ams_17_00@...> wrote: Hi, Im new to this group. I have noticed my sons head has become pretty flat on the back right side. I have been looking into getting him fitted for a band. I'm just not sure of the price. He does have insurance with Kaiser. Regardless of the price, I will still get this done. I just want to know what im looking at. Can some one please help me? My son is 4 mos old now, and I want to get started as soon as possible. What will my first step be? Please help! For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 I stay in Los Angeles. Please let me know. Filyaw <monicash@...> wrote: Hi and Welcome to the group. The first step is to talk to your pediatrician. You need an RX for the band/helmet. Your ped may refer you to a specialist. In the meantime you can begin aggressive repositioning. Keep him off the flat spot 24 hours a day. We have tons of tips. Go to the main board area and click on files or links then look for the repo folders. In the links section there is also a folder with links to assess severity. That may give you an idea of what you are dealing with. Have you noticed if your son prefers to always look one direction? A lot of kids with plagio have some tightness in the neck muscles which cause them to only look one way which can lead to the flat spot. The bands range from about $1500 - $3500 depending on brand. The key to good correction is an experienced ortho. Insurance sometimes covers and sometimes doesn't. We have tips for appealing denials. Where are you located? We may know of an ortho in your area that does free evaluations. mom to na DOC Grad South Carolina www.thefilyaws.com <ams_17_00@...> wrote: Hi, Im new to this group. I have noticed my sons head has become pretty flat on the back right side. I have been looking into getting him fitted for a band. I'm just not sure of the price. He does have insurance with Kaiser. Regardless of the price, I will still get this done. I just want to know what im looking at. Can some one please help me? My son is 4 mos old now, and I want to get started as soon as possible. What will my first step be? Please help! For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 I stay in Los Angeles. Please let me know. Filyaw <monicash@...> wrote: Hi and Welcome to the group. The first step is to talk to your pediatrician. You need an RX for the band/helmet. Your ped may refer you to a specialist. In the meantime you can begin aggressive repositioning. Keep him off the flat spot 24 hours a day. We have tons of tips. Go to the main board area and click on files or links then look for the repo folders. In the links section there is also a folder with links to assess severity. That may give you an idea of what you are dealing with. Have you noticed if your son prefers to always look one direction? A lot of kids with plagio have some tightness in the neck muscles which cause them to only look one way which can lead to the flat spot. The bands range from about $1500 - $3500 depending on brand. The key to good correction is an experienced ortho. Insurance sometimes covers and sometimes doesn't. We have tips for appealing denials. Where are you located? We may know of an ortho in your area that does free evaluations. mom to na DOC Grad South Carolina www.thefilyaws.com <ams_17_00@...> wrote: Hi, Im new to this group. I have noticed my sons head has become pretty flat on the back right side. I have been looking into getting him fitted for a band. I'm just not sure of the price. He does have insurance with Kaiser. Regardless of the price, I will still get this done. I just want to know what im looking at. Can some one please help me? My son is 4 mos old now, and I want to get started as soon as possible. What will my first step be? Please help! For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 I stay in Los Angeles, and my son is under Kaiser....And yes his ped has recognized it, but didnt give much attention to itNatasha Gubash <ngubash@...> wrote: Has your pediatrician recognized the problem yet? What area do you live and we can recommend a treatment facility and/or doctors in your area.Natasha> > Hi, Im new to this group. I have noticed my sons head has become > pretty flat on the back right side. I have been looking into getting > him fitted for a band. I'm just not sure of the price. He does have > insurance with Kaiser. Regardless of the price, I will still get this > done. I just want to know what im looking at. Can some one please > help me? My son is 4 mos old now, and I want to get started as soon as > possible. What will my first step be? Please help!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 I stay in Los Angeles, and my son is under Kaiser....And yes his ped has recognized it, but didnt give much attention to itNatasha Gubash <ngubash@...> wrote: Has your pediatrician recognized the problem yet? What area do you live and we can recommend a treatment facility and/or doctors in your area.Natasha> > Hi, Im new to this group. I have noticed my sons head has become > pretty flat on the back right side. I have been looking into getting > him fitted for a band. I'm just not sure of the price. He does have > insurance with Kaiser. Regardless of the price, I will still get this > done. I just want to know what im looking at. Can some one please > help me? My son is 4 mos old now, and I want to get started as soon as > possible. What will my first step be? Please help!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2005 Report Share Posted June 6, 2005 Hi Shar I am surprised she put you on enbrel so soon. I would think if you have been on them since Jan. you should have some relief by now. Maybe she needs to adjust your dose of MTX or something. I myself have enbrel, MTX, Prednisone and Arava. So they may add on another med to what you are already taking. Do you have the psoriatic rash at all? Hope you find relief soon! Joy In , " schipss " <sharsackett@s...> wrote: > Hello Everyone....I was diagnosed with PA on 1-1-05. My rheumy put me > on Enbrel and Mtx immediately. I thought for awhile I was slowly > getting better. My biggest problem is tendonitis in my fingers. I > have about 4 trigger fingers and I am unable to grasp anything. Such > as opening bottles or peeling a potato is unheard of. Steering a car > is even difficult. Now I'm even beginning to wonder IF I have PA. I > have an appointment with my rheumy on June 15. What is the census out > there? Do I request a different med? Have I given the enbrel and mtx > long enough to work? I have been on them for 4 months. My hands are > so very sore. I just don't know what to do next. Any info from any of > you would be most appreciated. > Thank you, Shar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Dear Shar, So sorry I could not get back to you sooner, but I was in hospital for the last ten days myself. and am still on iv qntibiotics at home for some serious infections that i HAVE been carrying around for 18 months on and off due to the sometimes over-immune suppression from our arthritis meds. We have to constantly live on the fine line and give and take betweem the two. In your case, you did not mention what dose he has you on for the Methotrexate. I have seen self injectable doses as high as 5o mg a week with excellent for many years. Then after a while it stops working, dang it! For most everyone by the way it does take a full six weeks for the drug to really kick in and for you to feel any increase in dose too. The Enbrel had and continues to be a miracle for so many people. All except for me that it is! I waited a full eight weeks with only minor improvement. Luckily through trial and error over the years we have now settled on a three drug combination that is helping really as of two weeks ago and I had been in this last flare for over 9 months. So far with the exception with my sacroiliac region and my lower lumbar region, the rest of my joints swelling all went away in a matter of 24 hours- nothing short of a miracle!! And I was unable to cut out LL PAin meds except for AT bedtimes for my back. Keep on plugging. If your current rheumy is not helping you, I recommend going to a large teaching hospital. They are always on the cutting edge of care and they reallu know what is up! I goto Columbia Presbyterian Medical Center and use Dr. Webster. She know takes Blue Cross and Shield groups and she works with Medicare/. I want too chat you can find me by cal, but I am really home in my recliner home sweet nome/ So long for now/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 This is something that I've been interested in pursuing. Does anyone know of a teaching hospital in the Los Angeles area that has a specialized clinic for PA? If so, please let me know. Thanks, Haleila > >Keep on plugging. If your current rheumy is not helping you, I recommend >going to a large teaching hospital. They are always on the cutting edge of >care and they reallu know what is up! I goto Columbia Presbyterian Medical >Center and use Dr. Webster. She know takes Blue Cross and Shield >groups and she >works with Medicare/. I want too chat you can find me by cal, but I am >really home in my recliner home sweet nome/ > >So long for now/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2005 Report Share Posted July 7, 2005 Sometimes it can take awhile. There may be that one thing that is keeping him from progressing more quickly as well. Seems like the biggies are yeast, viruses, bad digestion(needing enzymes or diet) and the ever present mercury. A site to check out is danasview.net. She has a great site, tons of information. Also to remember, start supplements one at a time to know if they are tolerated and needed. Just because someone else's kiddo needs something, yours may not. I have read of kids regressing when given something they don't need. It is a total balancing act. Mine is also high functioning and somewhat verbal. He doesn't show the dramatic responses to supplements like other kids often do. What I really do notice is changes when we drop something. I suddenly see what it was doing then. For my son the stimming is him needing b vitamins. He is a big visual stimmer and I can give him a big dose and it seems to work in a matter of hours. Yeast I see mentioned often for stimming as well. I also think there is something the enzymes may not be working on. We are going to get the blood test done again to see what is happening there. Another thought, are you using essential fatty acids?? I often read that most everyone is needing that especially ASD kids. I wish you much luck. I understand the $$ thing, I just got a job to help with finances. We are going to be chelating him as well as his brother and I. We also eat a lot of natural and organic foods and use products (cleaning/body) that are free of harmful chemicals. Not a cheap situation! Bruso <sbruso@...> wrote: I have had my 4 yr old son on the whole slew of vitamens aka SNT, Enzymes,biocidin,nystatin,methyl B12, etc... I haven't noticed much if any change...He has been taking all vit for about 2 1/2 months and SNT for about4 months. When should I notice some changes...I am really desperate as you all know it is $$$ and very rigid regimine. He is very high funcitioning and is very verbal. So I know the " changes " would be discrete but His stemming is still pretty strong (he is a runner). Should I continue; is he one that the vitamens just aren't helping; I am not sure what to think? Anyone have advice?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2005 Report Share Posted July 9, 2005 > very high funcitioning and is very verbal. So I know the " changes " > would be discrete but His stemming is still pretty strong (he is a > runner). This form of stim is commonly associated with phenol intolerance http://www.danasview.net/phenol.htm You can consider dropping the SNT, that can really aggravate phenol intolerance. Also consider No-Fenol enzyme http://www.houstonni.com/ Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2005 Report Share Posted July 30, 2005 Start slowly with the Peptizyde. Low and slow is not that critical for the Zyme Prime, but it is best to do so with the high protease products. Devin > I just placed my order for Peptizyde and HN Zyne Prime. My son, , > is 32 months old. Here's what I am planning to do: > > 1/4 capsule of each before every meal, by making the chocolate chip > wafers. > > Is this a good way to start, or should I introduce one product at a > time? How many days of this until I increase the dosage? Do these > capsules open up easily? > > I also plan on making the epsom salt oil mentioned in the book. How > often should I use this, daily? > > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 I agree with Tammy....if you are a lunatic, then you have lots of company. Is there any way that you could get respite care---especially when your dh is out of town? You need to talk with someone you trust...do you have any family nearby that could help out...or maybe a good friend? Outside of that, I would suggest counseling maybe? Just know that you are not alone and lots of us can identify with your situation. Blessings, Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 If you're a screaming lunatic, then so am I... and you should talk to a doctor you trust, I pray that you have one... and see if there is something he can do. Our solution for now is Risperdal, and frequent breaks for Mommy. I'm not on the group often, but I wanted to let you know you are not crazy, and you're not alone. Love Tammy (Hi to everyone else- things are crazy here- training for Red Cross Disaster Relief team to go to New Orleans and help with cleanup, and in nursing school still as well. Nick is having a hard time with puberty, but we're using Risperdal and Abilify to help him keep his cool.) ( ) Please help Sorry to sound so melodramatic, but this has been an awful night. My name is and I have 4 sons, 2 with AS, one with Executive Function Disorder and one Neurotypical. My oldest is the most affected by his disability. He has been on Zoloft for just about a year and it has made a tremendous difference in his anxiety! He is finally able to go to the bathroom alone at 12! Our latest issue has been that he is incessantly picking on his younger brothers. They are all very close in age and have always gotten along fairly well. This seems to almost be an OCD issue with him. He simply cannot stop. The yelling is almost constant in my house, if it's not them, it's me. My husband travels a lot for his work, so it's just me a lot of the time. I just completely lost it tonight and feel so bad. This is the first time since he was diagnosed with AS at age 6 that I have felt I can't handle it. So, if you don't think I am a screaming lunatic and you can help me, I would truly appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Hi , I am too:) And if you don't become a 'screaming lunatic' once in a while, than you have to be ill (or on some really good meds) *smile* You are entitled to feel frustrated on occasion. I have three Aspie boys and I am an Aspie myself, so occasionally (especially certain 'times of the month' ... Is that TMI???) I just break down! I am exhausted or just overwhelmed! We just need to find a way to release once in a while. Looks like this is your turn! You have a lot on your plate! Don't forget to find some YOU time. Even if it means, playing some soft music while the kids are running around the house. Maybe you can all sit and do a relaxation time (2 minutes) where you all just breath in and out!!!! Sit criss cross applesauce and try it:) Ok, maybe they won't like it, but try it. If anything, maybe they will leave you alone for a few minutes, because you look too silly:) Just don't forget , to take care of them, means you need to take care of yourself first:) *hugs* from another 'currently not screaming lunatic' *smiles* B > Sorry to sound so melodramatic, but this has been an awful night. My > name is and I have 4 sons, 2 with AS, one with Executive Function > Disorder and one Neurotypical. My oldest is the most affected by his > disability. He has been on Zoloft for just about a year and it has > made a tremendous difference in his anxiety! He is finally able to go > to the bathroom alone at 12! Our latest issue has been that he is > incessantly picking on his younger brothers. They are all very close > in age and have always gotten along fairly well. This seems to almost > be an OCD issue with him. He simply cannot stop. The yelling is > almost constant in my house, if it's not them, it's me. My husband > travels a lot for his work, so it's just me a lot of the time. I just > completely lost it tonight and feel so bad. This is the first time > since he was diagnosed with AS at age 6 that I have felt I can't > handle it. So, if you don't think I am a screaming lunatic and you can > help me, I would truly appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Oh god, I am so sorry. Sounds like the usual. At some point you just can't take the craziness any longer. You are definitely not alone. Take a deep breath, just survive the night one hour at a time. Just go through the motions. Pretend. Don't laugh but we have started renting movies via Netflix that come to the house. That way, when the kids go to bed we can actually watch a movie. In peace and quiet. Trying to have more sex too. Movies and sex. That's it. That is our survival at this point. Friday and Saturday movie night. Don't even have to make the effort to go to the store to rent one. No other vices to get through this with. My AS 9 year old has obsessively played Monopoly with himself the entire weekend and for the latter half of today has obsessively tried to create phone cords and attach the tiny plugs and all the tiny wires. This because he has lost his computer obsession privilege. Amazing how quickly another obsession can quickly replace it. Survive my friend. One hour at a time. No other mother of NT children could do what you are doing. You are not alone....... ( ) Please help Sorry to sound so melodramatic, but this has been an awful night. My name is and I have 4 sons, 2 with AS, one with Executive Function Disorder and one Neurotypical. My oldest is the most affected by his disability. He has been on Zoloft for just about a year and it has made a tremendous difference in his anxiety! He is finally able to go to the bathroom alone at 12! Our latest issue has been that he is incessantly picking on his younger brothers. They are all very close in age and have always gotten along fairly well. This seems to almost be an OCD issue with him. He simply cannot stop. The yelling is almost constant in my house, if it's not them, it's me. My husband travels a lot for his work, so it's just me a lot of the time. I just completely lost it tonight and feel so bad. This is the first time since he was diagnosed with AS at age 6 that I have felt I can't handle it. So, if you don't think I am a screaming lunatic and you can help me, I would truly appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 I had to write to you about the one that is picking on the younger one. My son 8 AS use to do this to others. I tried everything and nothing would stick. it's not always his fault. I found out by watching what happened before the behavior, during, and after. If an other child started something and it resulted in my son hitting. I would give the other child a consequence. Then over & over I would say this each time it happened: We don't use our hands to hit, now you have to do something nice for that person. (that involves using his hands, in a nice way) example, now you have to help him by: maybe getting something for him, or picking up his toys. if its being fresh, he had to say something nice to make him feel better. this didn't work right away, but after a while it started getting much better. Maybe at first, an adult might have to show him an example of using his hands for helping & not hurting. Find out why he's picking on the youngest one and show him what to do instead. Don't assume he knows what else to do, instead of picking on the youngest one. Say instead of teasing your brother, walk away to this spot. (show him where) and let the others know, if your brother is in this special spot, you all need to say away. Maybe for you, can you get a respite worker to help so you can have a break. The respite worker can take the children out for a while. I don't know where you are? but maybe others that are reading this can show you how to get involved with ARC. or anyone else that you can apply for a respite worker. Do your children go to school? have you tried the parent resource group? ldemio <demio@...> wrote: Sorry to sound so melodramatic, but this has been an awful night. My name is and I have 4 sons, 2 with AS, one with Executive Function Disorder and one Neurotypical. My oldest is the most affected by his disability. He has been on Zoloft for just about a year and it has made a tremendous difference in his anxiety! He is finally able to go to the bathroom alone at 12! Our latest issue has been that he is incessantly picking on his younger brothers. They are all very close in age and have always gotten along fairly well. This seems to almost be an OCD issue with him. He simply cannot stop. The yelling is almost constant in my house, if it's not them, it's me. My husband travels a lot for his work, so it's just me a lot of the time. I just completely lost it tonight and feel so bad. This is the first time since he was diagnosed with AS at age 6 that I have felt I can't handle it. So, if you don't think I am a screaming lunatic and you can help me, I would truly appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Thank you so much. I guess it just helps to know there are others out there- that I am not alone. I really have been okay up till now. I have actually been the person the school recommends parents talk to when they first get the diagnosis. I was reading the post from the person with the 4 year old newly diagnosed and thought (through the tears) " Hey, I can help her " . I just subscribed to Netflix yesterday, so your post really made me smile. As for the other, well I mentioned my husband travels alot. Thank you for the support, I hope I can offer the same sometime. - > Oh god, I am so sorry. Sounds like the usual. At some point you just can't take the craziness any longer. You are definitely not alone. Take a deep breath, just survive the night one hour at a time. Just go through the motions. Pretend. Don't laugh but we have started renting movies via Netflix that come to the house. That way, when the kids go to bed we can actually watch a movie. In peace and quiet. Trying to have more sex too. Movies and sex. That's it. That is our survival at this point. Friday and Saturday movie night. Don't even have to make the effort to go to the store to rent one. No other vices to get through this with. > > My AS 9 year old has obsessively played Monopoly with himself the entire weekend and for the latter half of today has obsessively tried to create phone cords and attach the tiny plugs and all the tiny wires. This because he has lost his computer obsession privilege. Amazing how quickly another obsession can quickly replace it. > > Survive my friend. One hour at a time. No other mother of NT children could do what you are doing. You are not alone....... > ( ) Please help > > > Sorry to sound so melodramatic, but this has been an awful night. My > name is and I have 4 sons, 2 with AS, one with Executive Function > Disorder and one Neurotypical. My oldest is the most affected by his > disability. He has been on Zoloft for just about a year and it has > made a tremendous difference in his anxiety! He is finally able to go > to the bathroom alone at 12! Our latest issue has been that he is > incessantly picking on his younger brothers. They are all very close > in age and have always gotten along fairly well. This seems to almost > be an OCD issue with him. He simply cannot stop. The yelling is > almost constant in my house, if it's not them, it's me. My husband > travels a lot for his work, so it's just me a lot of the time. I just > completely lost it tonight and feel so bad. This is the first time > since he was diagnosed with AS at age 6 that I have felt I can't > handle it. So, if you don't think I am a screaming lunatic and you can > help me, I would truly appreciate it. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Hi , I'm number 3 We're definitely feeling your frustration. As others have recommended there are services in your community that may help, try contacting your local mental health association and/or autism society; they can either provide you with some services or help link you to various programs in the community (ie. respite programs (trained adults who come to your home and either stay their while you leave or take the child(ren) out for a few hours). As for the situation at home, maybe a family meeting would be helpful (have them sit at the table without distraction) with hubby if possible, and discuss the problem (I bet some good solutions can be identified from all members). Participation from all members is helpful because everyone is impacted someway somehow by this situation. Every member can help to break this cycle by recognizing when your son starts losing control. Sometimes children who are experiencing helplessness or powerlessness in other areas of their lives attempt to regain control by being aggressive to others, especially weaker ones. Counseling may be helpful. Vent as often as you need to, we're here for you. --- ldemio <demio@...> wrote: > Sorry to sound so melodramatic, but this has been an > awful night. My > name is and I have 4 sons, 2 with AS, one with > Executive Function > Disorder and one Neurotypical. My oldest is the > most affected by his > disability. He has been on Zoloft for just about a > year and it has > made a tremendous difference in his anxiety! He is > finally able to go > to the bathroom alone at 12! Our latest issue has > been that he is > incessantly picking on his younger brothers. They > are all very close > in age and have always gotten along fairly well. > This seems to almost > be an OCD issue with him. He simply cannot stop. > The yelling is > almost constant in my house, if it's not them, it's > me. My husband > travels a lot for his work, so it's just me a lot of > the time. I just > completely lost it tonight and feel so bad. This is > the first time > since he was diagnosed with AS at age 6 that I have > felt I can't > handle it. So, if you don't think I am a screaming > lunatic and you can > help me, I would truly appreciate it. > > > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Hi I just joined this group in desperation and was looking through the posts and was pleased (if that's the right word!) to find your post as it made me realise I was not alone. I can relate to how you feel, as I said I have joined the group out of sheer desperation because I don't know what to do but I will put that on a seperate post. All I can say is that there is at least one other person out there who knows what you are going through, so you are not being melodramatic! Keep your chin up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Hi I just joined this group in desperation and was looking through the posts and was pleased (if that's the right word!) to find your post as it made me realise I was not alone. I can relate to how you feel, as I said I have joined the group out of sheer desperation because I don't know what to do but I will put that on a seperate post. All I can say is that there is at least one other person out there who knows what you are going through, so you are not being melodramatic! Keep your chin up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 In a message dated 9/19/2005 7:31:47 PM Eastern Daylight Time, kellystar734@... writes: Wow. Here our school is not allowed to a parent with a child that has autism if there is someone else willing to talk to them or get/give advice. Our speech teacher has told me a year ago that she was surprised that I knew so much about the special ed laws and such. Yet I can't find out other parents that have a child with Autism. And you know that is sad cause I know I could help alot of them. Any ideas? Marj You can have your name given to other parents who can contact you if they want. This doesn't violate anyone's privacy. Tell someone - a counselor or ST - that you want to start a parent support group. Otherwise, you can advertise outside of school. Put an ad in the local paper advertising a support group for autism and start from there. We went to our superintendent and requested that the school work with us to form a parent teacher support group specifically for sped. Our super agreed and we've been moving forward with this ever since. Roxanna ô¿ô Today's subliminal thought is: Quote Link to comment Share on other sites More sharing options...
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