Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 I am in Charlottesville and have mushroom babies that need a new home. They are the offspring of a mother cultured from a bottle of GT's Orignial, though I am not a microbiologist, so I can't say how the culture has evolved since I first grew it. However, they are clean and have been kept in refrigeration (though some haven't been used in a while). Let me know if you're still looking and I can get you a couple. > > My original culture has died, I would be happy to pay postage if > someone in the Mid-Atlantic/Virginia (Charlottesville) area could send > me a new starter mushroom. Thank you very much. Also if any one can > think why my culture died I would appreciate feed back. Thanks again > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 hi. why do you think he (scoobie) died. does scoobie not grow a baby? give specifics how long you were brewing and what happened. i am only a newbie - but i can think of two reasons why it would die. did you put it into too hot tea water when you started? or maybe too cold? thats all i know. ...Arielle > > > > > > My original culture has died, I would be happy to pay postage if > > someone in the Mid-Atlantic/Virginia (Charlottesville) area could > send > > me a new starter mushroom. Thank you very much. Also if any one can > > think why my culture died I would appreciate feed back. Thanks again > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Try http://www.angio.org/ Sueboulderpatch <boulderpatch@...> wrote: i am looking for any information i can get about fibroplast growth factor 1 or FGF-1. my father has been advised by his cardiologist that he is not a candidate for further bypass surgery or even a stint since his arteries are so diseased that it won't work. i read an article in the Reader's Digest about FGF-1 and am trying to locate a doctor that does this procedure. it is also known as angiogenesis. it is a protein that is injected into the heart which causes the heart to grow new capillaries and sma arteries in the heart. at this point, the only thing they can do for my father is try different medications. they haven't given him a time factor but we are willing to to try this. the only other option may be a transplant but we are not sure if that even is an option at this point.if anyone has any info, please let me know.thanks.michelle For a fun time try http://www.peternoone.com.For The DC5 fans, please check the updates on Mike at http://www.mikesmith1964.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 thanks to everyone who sent a response. i will keep you posted on how things go. michelle & family Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Sorry about your ankle. Ouch! This happened to my sister-in-law a few years ago. Some family members were able to help, but they also needed to hire people to help out with my niece Jade for a while. I posted an add on craigslist and there was great response because the economy was in a tailspin almost as bad as now. It's always easier to hire bright, responsible, and enthusiastic people when the economy sucks. I recommend posting ads at the career centers and disabled students services programs at nearby universities, community colleges, adult schools, nursing and CNA programs, and massage/wholistic health care training programs. If you or people you're close to are a member of of civic or religious community organizations, these are good places to spread the word. You never know, your neighbor's cousin might be a college kid looking for a little work. I've attached the ad that I use below. It's the one I am successful with while sticking to word-of-mouth connections. Rate of pay will vary from community to community. Seeking Personal Assistant(s) Starting Times Negotiable • Wednesdays - 8:30 p.m. (2 - 3 hours) • Fridays - 9:30 p.m. ($30 for 2 hours or less; $40 for more than 2 hours) • Every Other Saturday - 9:30 p.m. ($30 for 2 hours or less; $40 for more than 2 hours) I'm an active 42 year old woman who lives with my partner and 2 cats. I need assistance with most aspects of my personal care, cooking, household chores including occasional home maintenance and light repairs, and administrative tasks. I also need some who can drive me in my van. There may be opportunities to travel with us. I use a power wheelchair and numerous home health gadgets. Our home is 5 blocks from the N. Berkeley BART Station, a mile west of UCB, and on the 51 & 88 Bus lines. I enjoy spending time with my partner, friends, and family. I like cooking, listening to music, writing, playing games, watching movies, beading, drawing, reading, computer geeking, gardening, chatting over tea, and such. I am a responsible employer with 25 years of experience hiring, training and working with my assistants. I am looking for responsible, organized, careful, and meticulous people who enjoy good conversation, don't mind if I zone out on TV, and respect my home and privacy. Personal Care Bathing (Bed Bath) Bathrooming (Bedpan & Catheter) Dressing Transferring (55 lb. Cradle Lift - Yes, I'm really small) Occasional Feeding Grooming Household Stuff Cooking Dishes Making Bed Tidying Up Plant Care Sweeping/Mopping Errands Driving My Van (I strongly prefer you can drive) Cat Care Clerical (Minimal) Filing Bill Paying Correspondence Computer Scheduling (must have and use e-mail account regularly) Requirements Male or Female Comfort with Personal Care Ability to Readily Lift 55 lbs. Prompt and Reliable (sick days must be very rare, though, occasionally swapping shifts with other assistants is fine) Must Be Able to Follow Directions Good Sense of Humor Detail-Oriented Quick Learner Strong Communication Skills Fluent in English Valid Driver's License with Good Record Social Security # Good References I am willing to Train/No Attendant Work Experience Necessary No perfume No homophobes please Rate of Pay: $12.00 Training $13.00 Starting (negotiable based on experience) Regular Raises Medical/Dental/Vision Benefits for working 70+ hrs./month After 3 Months E-mail resume or paragraph about yourself, plus references: Alana - alrt@... > > i have a 15 year old daughter with sma II. i broke my ankle last night and need to get some help with her.any ideas? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Sorry to hear this. Where do you live? I could look up some resources for you. Email me directly if you do not want to give your location on the list. Lori ________________________________ From: Kathy Maloney <kitty72470@...> SMA List < > Sent: Friday, January 16, 2009 10:47:21 AM Subject: need help i have a 15 year old daughter with sma II. i broke my ankle last night and need to get some help with her.any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2009 Report Share Posted January 17, 2009 Thanks. I really appreciate any help. We live in Bergen County, New Jersey. From: Lori G <lorig713@...> Subject: Re: need help Date: Friday, January 16, 2009, 3:12 PM Sorry to hear this. Where do you live? I could look up some resources for you. Email me directly if you do not want to give your location on the list. Lori ____________ _________ _________ __ From: Kathy Maloney <kitty72470 (DOT) com> SMA List <@gro ups.com> Sent: Friday, January 16, 2009 10:47:21 AM Subject: need help i have a 15 year old daughter with sma II. i broke my ankle last night and need to get some help with her.any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2009 Report Share Posted January 17, 2009 Believe it or not many people find help/caregivers by posting the need on Craigslist.org for your area. Be prudent, but you could give that a try. Nate SMASpace.com On 1/17/09, Kathy Maloney <kitty72470@...> wrote: > Thanks. I really appreciate any help. We live in Bergen County, New > Jersey. > > > > From: Lori G <lorig713@...> > Subject: Re: need help > > Date: Friday, January 16, 2009, 3:12 PM > > > > > > > Sorry to hear this. Where do you live? I could look up some resources for > you. Email me directly if you do not want to give your location on the > list. > > Lori > > ____________ _________ _________ __ > From: Kathy Maloney <kitty72470 (DOT) com> > SMA List <@gro ups.com> > Sent: Friday, January 16, 2009 10:47:21 AM > Subject: need help > > i have a 15 year old daughter with sma II. i broke my ankle last night and > need to get some help with her.any ideas? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2009 Report Share Posted January 17, 2009 I will respond to you directly. Lori ________________________________ From: Kathy Maloney <kitty72470@...> Sent: Saturday, January 17, 2009 10:35:58 AM Subject: Re: need help Thanks. I really appreciate any help. We live in Bergen County, New Jersey. From: Lori G <lorig713 (DOT) com> Subject: Re: need help @gro ups.com Date: Friday, January 16, 2009, 3:12 PM Sorry to hear this. Where do you live? I could look up some resources for you. Email me directly if you do not want to give your location on the list. Lori ____________ _________ _________ __ From: Kathy Maloney <kitty72470@ . com> SMA List <@ gro ups.com> Sent: Friday, January 16, 2009 10:47:21 AM Subject: need help i have a 15 year old daughter with sma II. i broke my ankle last night and need to get some help with her.any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2009 Report Share Posted January 18, 2009 So far- I've found the best pcas by emailing college dept heads in nursing, pt, resp pt, even end life studies majors, who pass on my job opening with their students. Sorry but the very worst pcas I've had in twenty years that I've ever met came from craigslist > > > > From: Lori G <lorig713@...> > > Subject: Re: need help > > > > Date: Friday, January 16, 2009, 3:12 PM > > > > > > > > > > > > > > Sorry to hear this. Where do you live? I could look up some resources for > > you. Email me directly if you do not want to give your location on the > > list. > > > > Lori > > > > ____________ _________ _________ __ > > From: Kathy Maloney <kitty72470 (DOT) com> > > SMA List <@gro ups.com> > > Sent: Friday, January 16, 2009 10:47:21 AM > > Subject: need help > > > > i have a 15 year old daughter with sma II. i broke my ankle last night and > > need to get some help with her.any ideas? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2009 Report Share Posted January 18, 2009 Hi Kathy,  I hope you're feeling okay and things are going, at least, somewhat smoothly. I know it's a longshot, but have you tried contacting your local FSMA Chapter? It is not a service the organization provides, but the Chapter may have volunteers willing to lend a hand. I'm not certain what Chapter covers your area, but I can help find out, if you wish...  Amy M. From: Lori G <lorig713 (DOT) com> Subject: Re: need help @gro ups.com Date: Friday, January 16, 2009, 3:12 PM Sorry to hear this. Where do you live? I could look up some resources for you. Email me directly if you do not want to give your location on the list. Lori ____________ _________ _________ __ From: Kathy Maloney <kitty72470@ . com> SMA List <@ gro ups.com> Sent: Friday, January 16, 2009 10:47:21 AM Subject: need help i have a 15 year old daughter with sma II. i broke my ankle last night and need to get some help with her.any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 Hi Amy. I contacted my local MDA, but not FSMA. I will try that though. Thank you. From: Lori G <lorig713 (DOT) com> Subject: Re: need help @gro ups.com Date: Friday, January 16, 2009, 3:12 PM Sorry to hear this. Where do you live? I could look up some resources for you. Email me directly if you do not want to give your location on the list. Lori ____________ _________ _________ __ From: Kathy Maloney <kitty72470@ . com> SMA List <@ gro ups.com> Sent: Friday, January 16, 2009 10:47:21 AM Subject: need help i have a 15 year old daughter with sma II. i broke my ankle last night and need to get some help with her.any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Hi there, The problem for them to diagnose crypto is that they definitely had to test for it. I know because I had it. My doctor prescribed Parmomycin ( sp) I took it for a few weeks and luckily it cleared. Are you sure that your Part D doesn't cover this. Your plan could make an exception to the formulary as this could potentially life threatening. An emergency appeal would take only like 48 hours if your doc writes a note. Call you plan again to find out about their exception/appeal process. Eddie Free Credit Report and Score Tracking! Get it Now for $0 at CreditReport.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Hi there, The problem for them to diagnose crypto is that they definitely had to test for it. I know because I had it. My doctor prescribed Parmomycin ( sp) I took it for a few weeks and luckily it cleared. Are you sure that your Part D doesn't cover this. Your plan could make an exception to the formulary as this could potentially life threatening. An emergency appeal would take only like 48 hours if your doc writes a note. Call you plan again to find out about their exception/appeal process. Eddie Free Credit Report and Score Tracking! Get it Now for $0 at CreditReport.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2009 Report Share Posted June 7, 2009 Hi , With a change in his behavior after receiving a concussion, I'm surprised the neurologist didn't order an MRI and or CT scan. Get a second opinion if needed. I also think he should have a neuropsychological completed by the best you can find in your area. How old is Tyler? What are the professionals at his school suggesting? need help > Hi- > I haven't been on this loop in a while, but there are still some long > termers that may remember us. My son, Tyler, was doing well. He was happy, > sneaky, smart, talky, loved to go up and converse with people. I had him > in a small regular school with an aide until he got kicked out in Jan. > Talking more than ever and then he started to change. We know he has adhd > too. Then soon after seeing some differences he hit his head in Dec and > had a concussion for several weeks. All subsided except this high > intensity of anger. We had him on amino acids that were the building > blocks for this neurotransmitters. They did good for awhile but I figured > this may be it. He slumped in school and his eyes crossed and was > unresponsive. I took him off the next day. He was back laughing though > still had high intensive anger. > > It took us 5 mos to get into neurology and they just put him on clonidine > for behavior. It made him wake up at night and be out of it during the > day. Opposite of what it was to do. The another med we tried kept him up > every night. He is very aggressive to hitting, scratching, biting and I > cannot move him anymore due to size. He didn't do any of this 6 mos ago he > would plop and run but not have aggressiveness. I could redirect him. I am > trying to get into a psychiatrist for him but I have always not done > ritalin due to the sudden death warnings with congenital heart disease and > he has several issues with his heart. Has anyone at all experienced this > and have feedback. I feel like he has gone from independence to an extent > to almost total isolation for both of us. Any meds that might not effect > the heart? No one did a head scan either during all this. I did get one > eeg from the primary dr though he was awake the whole time so I do not > know if they got anything really. > > I know there is a strong behaviorial component which I now have him in a > small specialized school with aba therapy throughout the day. > > I need help with this now. I feel like he is slipping and I may have to > put him somewhere because he is hurting me everyday. > > in FL > > > > ------------------------------------ > > Click reply to all for messages to go to the list. Just hit reply for > messages to go to the sender of the message. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2009 Report Share Posted June 7, 2009 All of the stimulants for ADHD can have the sudden death. The only medication for ADHD that is not a stimulant is Strattera. was on that for a while, but we found out that has Bipolar along with severe ADHD and Strattera is a bad drug for those with Bipolar. Good Luck!! we all need it from time to time, need help Hi- I haven't been on this loop in a while, but there are still some long termers that may remember us. My son, Tyler, was doing well. He was happy, sneaky, smart, talky, loved to go up and converse with people. I had him in a small regular school with an aide until he got kicked out in Jan. Talking more than ever and then he started to change. We know he has adhd too. Then soon after seeing some differences he hit his head in Dec and had a concussion for several weeks. All subsided except this high intensity of anger. We had him on amino acids that were the building blocks for this neurotransmitters. They did good for awhile but I figured this may be it. He slumped in school and his eyes crossed and was unresponsive. I took him off the next day. He was back laughing though still had high intensive anger. It took us 5 mos to get into neurology and they just put him on clonidine for behavior. It made him wake up at night and be out of it during the day. Opposite of what it was to do. The another med we tried kept him up every night. He is very aggressive to hitting, scratching, biting and I cannot move him anymore due to size. He didn't do any of this 6 mos ago he would plop and run but not have aggressiveness. I could redirect him. I am trying to get into a psychiatrist for him but I have always not done ritalin due to the sudden death warnings with congenital heart disease and he has several issues with his heart. Has anyone at all experienced this and have feedback. I feel like he has gone from independence to an extent to almost total isolation for both of us. Any meds that might not effect the heart? No one did a head scan either during all this. I did get one eeg from the primary dr though he was awake the whole time so I do not know if they got anything really. I know there is a strong behaviorial component which I now have him in a small specialized school with aba therapy throughout the day. I need help with this now. I feel like he is slipping and I may have to put him somewhere because he is hurting me everyday. in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2009 Report Share Posted June 7, 2009 , What do you do for the bipolar and when was he diagnosed? Anyone tried any specialty tests or diets etc? Re: need help All of the stimulants for ADHD can have the sudden death. The only medication for ADHD that is not a stimulant is Strattera. was on that for a while, but we found out that has Bipolar along with severe ADHD and Strattera is a bad drug for those with Bipolar. Good Luck!! we all need it from time to time, need help Hi- I haven't been on this loop in a while, but there are still some long termers that may remember us. My son, Tyler, was doing well. He was happy, sneaky, smart, talky, loved to go up and converse with people. I had him in a small regular school with an aide until he got kicked out in Jan. Talking more than ever and then he started to change. We know he has adhd too. Then soon after seeing some differences he hit his head in Dec and had a concussion for several weeks. All subsided except this high intensity of anger. We had him on amino acids that were the building blocks for this neurotransmitters. They did good for awhile but I figured this may be it. He slumped in school and his eyes crossed and was unresponsive. I took him off the next day. He was back laughing though still had high intensive anger. It took us 5 mos to get into neurology and they just put him on clonidine for behavior. It made him wake up at night and be out of it during the day. Opposite of what it was to do. The another med we tried kept him up every night. He is very aggressive to hitting, scratching, biting and I cannot move him anymore due to size. He didn't do any of this 6 mos ago he would plop and run but not have aggressiveness. I could redirect him. I am trying to get into a psychiatrist for him but I have always not done ritalin due to the sudden death warnings with congenital heart disease and he has several issues with his heart. Has anyone at all experienced this and have feedback. I feel like he has gone from independence to an extent to almost total isolation for both of us. Any meds that might not effect the heart? No one did a head scan either during all this. I did get one eeg from the primary dr though he was awake the whole time so I do not know if they got anything really. I know there is a strong behaviorial component which I now have him in a small specialized school with aba therapy throughout the day. I need help with this now. I feel like he is slipping and I may have to put him somewhere because he is hurting me everyday. in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2009 Report Share Posted June 7, 2009 He is 7 1/2. Several people are surprised, but not being able to get in for so long was bad. I took him to the ER the same day, but he was fine and they just stapled his head. I think now they should have done a CT or MRI. 2 days later he was vomiting all day. I did not go back to the ER thinking of my copay but called the dr. She just gave me info for vomiting and said to come in. He started losing speech and stuttering sounds between parts of words. He would come up to me and pee and he is potty trained. He would scream all the time for no reason and hit things. He also started high sensitivity to sounds like me washing dishes or beeping or a buzz. All these things went away after 3 wks though of course I got no testing during this critical time. It wasn't until he slumped and I begged to get him checked for seizures. This has been very hard. Who does a neuropsychological? Re: need help Hi , With a change in his behavior after receiving a concussion, I'm surprised the neurologist didn't order an MRI and or CT scan. Get a second opinion if needed. I also think he should have a neuropsychological completed by the best you can find in your area. How old is Tyler? What are the professionals at his school suggesting? need help > Hi- > I haven't been on this loop in a while, but there are still some long > termers that may remember us. My son, Tyler, was doing well. He was happy, > sneaky, smart, talky, loved to go up and converse with people. I had him > in a small regular school with an aide until he got kicked out in Jan. > Talking more than ever and then he started to change. We know he has adhd > too. Then soon after seeing some differences he hit his head in Dec and > had a concussion for several weeks. All subsided except this high > intensity of anger. We had him on amino acids that were the building > blocks for this neurotransmitters. They did good for awhile but I figured > this may be it. He slumped in school and his eyes crossed and was > unresponsive. I took him off the next day. He was back laughing though > still had high intensive anger. > > It took us 5 mos to get into neurology and they just put him on clonidine > for behavior. It made him wake up at night and be out of it during the > day. Opposite of what it was to do. The another med we tried kept him up > every night. He is very aggressive to hitting, scratching, biting and I > cannot move him anymore due to size. He didn't do any of this 6 mos ago he > would plop and run but not have aggressiveness. I could redirect him. I am > trying to get into a psychiatrist for him but I have always not done > ritalin due to the sudden death warnings with congenital heart disease and > he has several issues with his heart. Has anyone at all experienced this > and have feedback. I feel like he has gone from independence to an extent > to almost total isolation for both of us. Any meds that might not effect > the heart? No one did a head scan either during all this. I did get one > eeg from the primary dr though he was awake the whole time so I do not > know if they got anything really. > > I know there is a strong behaviorial component which I now have him in a > small specialized school with aba therapy throughout the day. > > I need help with this now. I feel like he is slipping and I may have to > put him somewhere because he is hurting me everyday. > > in FL > > > > ------------------------------------ > > Click reply to all for messages to go to the list. Just hit reply for > messages to go to the sender of the message. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2009 Report Share Posted June 7, 2009 Hi , I am so sorry to hear about this happening to Tyler! of course I still remember him and his big brother from our get-together in Georgia years ago. I hope you'll get some solid advice about what to do for him. Take care, Patty From: White <papertree820@...> Subject: RE: need help " CSBC " <cindysue@...>, , " brandytree1000 " <papertree820@...> Date: Sunday, June 7, 2009, 8:56 PM He is 7 1/2. Several people are surprised, but not being able to get in for so long was bad. I took him to the ER the same day, but he was fine and they just stapled his head. I think now they should have done a CT or MRI. 2 days later he was vomiting all day. I did not go back to the ER thinking of my copay but called the dr. She just gave me info for vomiting and said to come in. He started losing speech and stuttering sounds between parts of words. He would come up to me and pee and he is potty trained. He would scream all the time for no reason and hit things. He also started high sensitivity to sounds like me washing dishes or beeping or a buzz. All these things went away after 3 wks though of course I got no testing during this critical time. It wasn't until he slumped and I begged to get him checked for seizures. This has been very hard. Who does a neuropsychological? Re: need help Hi , With a change in his behavior after receiving a concussion, I'm surprised the neurologist didn't order an MRI and or CT scan. Get a second opinion if needed. I also think he should have a neuropsychological completed by the best you can find in your area. How old is Tyler? What are the professionals at his school suggesting? need help > Hi- > I haven't been on this loop in a while, but there are still some long > termers that may remember us. My son, Tyler, was doing well. He was happy, > sneaky, smart, talky, loved to go up and converse with people. I had him > in a small regular school with an aide until he got kicked out in Jan. > Talking more than ever and then he started to change. We know he has adhd > too. Then soon after seeing some differences he hit his head in Dec and > had a concussion for several weeks. All subsided except this high > intensity of anger. We had him on amino acids that were the building > blocks for this neurotransmitters. They did good for awhile but I figured > this may be it. He slumped in school and his eyes crossed and was > unresponsive. I took him off the next day. He was back laughing though > still had high intensive anger. > > It took us 5 mos to get into neurology and they just put him on clonidine > for behavior. It made him wake up at night and be out of it during the > day. Opposite of what it was to do. The another med we tried kept him up > every night. He is very aggressive to hitting, scratching, biting and I > cannot move him anymore due to size. He didn't do any of this 6 mos ago he > would plop and run but not have aggressiveness. I could redirect him. I am > trying to get into a psychiatrist for him but I have always not done > ritalin due to the sudden death warnings with congenital heart disease and > he has several issues with his heart. Has anyone at all experienced this > and have feedback. I feel like he has gone from independence to an extent > to almost total isolation for both of us. Any meds that might not effect > the heart? No one did a head scan either during all this. I did get one > eeg from the primary dr though he was awake the whole time so I do not > know if they got anything really. > > I know there is a strong behaviorial component which I now have him in a > small specialized school with aba therapy throughout the day. > > I need help with this now. I feel like he is slipping and I may have to > put him somewhere because he is hurting me everyday. > > in FL > > > > ------------ --------- --------- ------ > > Click reply to all for messages to go to the list. Just hit reply for > messages to go to the sender of the message. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Nic tried Straterra and that made him extremely violent. There's a boy in the ES class I work in who was dxed with bipolar and his Dr put him on Strattera but he has been taken off also. Di need help > > > > > > Hi- > I haven't been on this loop in a while, but there are still some long > termers that may remember us. My son, Tyler, was doing well. He was happy, > sneaky, smart, talky, loved to go up and converse with people. I had him > in a small regular school with an aide until he got kicked out in Jan. > Talking more than ever and then he started to change. We know he has adhd > too. Then soon after seeing some differences he hit his head in Dec and > had a concussion for several weeks. All subsided except this high > intensity of anger. We had him on amino acids that were the building > blocks for this neurotransmitters. They did good for awhile but I figured > this may be it. He slumped in school and his eyes crossed and was > unresponsive. I took him off the next day. He was back laughing though > still had high intensive anger. > > It took us 5 mos to get into neurology and they just put him on clonidine > for behavior. It made him wake up at night and be out of it during the > day. Opposite of what it was to do. The another med we tried kept him up > every night. He is very aggressive to hitting, scratching, biting and I > cannot move him anymore due to size. He didn't do any of this 6 mos ago he > would plop and run but not have aggressiveness. I could redirect him. I am > trying to get into a psychiatrist for him but I have always not done > ritalin due to the sudden death warnings with congenital heart disease and > he has several issues with his heart. Has anyone at all experienced this > and have feedback. I feel like he has gone from independence to an extent > to almost total isolation for both of us. Any meds that might not effect > the heart? No one did a head scan either during all this. I did get one > eeg from the primary dr though he was awake the whole time so I do not > know if they got anything really. > > I know there is a strong behaviorial component which I now have him in a > small specialized school with aba therapy throughout the day. > > I need help with this now. I feel like he is slipping and I may have to > put him somewhere because he is hurting me everyday. > > in FL > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 This is what we deal with in Myah too. The behaviors are exactly the same-from what you described and yes, isolation is it. After MANY breakdowns ( J ) and doctor appts, our pediatrician, of all docs, prescribed Zoloft for anxiety and OCD. It has helped A LOT! It takes a while for it to kick in, but we noticed changes on day 2! It doesn't make sense that anxiety makes you hit, but it does-I guess. For the first time in 5 weeks we forgot to give her meds yesterday and I got a chair and Barbie winged at me along with a few fists, my husband got the same Barbie and one of the other children got a toy thrown at her. It was NOT a good day and made it quite clear that the meds are helping and that we MUST NOT forget them-ever! Keep in mind that we were on Paxil last year, which is also an antidepressant and it caused horrific tics so we had to take her off. She was not able to function. All in all we have been on Adderall, Clonodine, Paxil, Lamictal (for bipolar) and now this. So far, it's the best and I thank my ped for getting us there. Keep in mind, she's not " fixed " by any stretch, but at least she will say that she's happy and is much easier going in all situations with a fuse that it no longer that of a gnat. Good luck. J , Mom to Myah 8, DS, Diabetes, Shianne 4, Isabella almost 2 From: [mailto: ] On Behalf Of brandytree1000 Sent: Sunday, June 07, 2009 4:33 PM Subject: need help Hi- I haven't been on this loop in a while, but there are still some long termers that may remember us. My son, Tyler, was doing well. He was happy, sneaky, smart, talky, loved to go up and converse with people. I had him in a small regular school with an aide until he got kicked out in Jan. Talking more than ever and then he started to change. We know he has adhd too. Then soon after seeing some differences he hit his head in Dec and had a concussion for several weeks. All subsided except this high intensity of anger. We had him on amino acids that were the building blocks for this neurotransmitters. They did good for awhile but I figured this may be it. He slumped in school and his eyes crossed and was unresponsive. I took him off the next day. He was back laughing though still had high intensive anger. It took us 5 mos to get into neurology and they just put him on clonidine for behavior. It made him wake up at night and be out of it during the day. Opposite of what it was to do. The another med we tried kept him up every night. He is very aggressive to hitting, scratching, biting and I cannot move him anymore due to size. He didn't do any of this 6 mos ago he would plop and run but not have aggressiveness. I could redirect him. I am trying to get into a psychiatrist for him but I have always not done ritalin due to the sudden death warnings with congenital heart disease and he has several issues with his heart. Has anyone at all experienced this and have feedback. I feel like he has gone from independence to an extent to almost total isolation for both of us. Any meds that might not effect the heart? No one did a head scan either during all this. I did get one eeg from the primary dr though he was awake the whole time so I do not know if they got anything really. I know there is a strong behaviorial component which I now have him in a small specialized school with aba therapy throughout the day. I need help with this now. I feel like he is slipping and I may have to put him somewhere because he is hurting me everyday. in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2009 Report Share Posted July 22, 2009 just a quick note - we used a company called geneDx...the tests were done in a normal room at OUR pediatricians office. The ped office called geneDx and set up everything for us, a kit was mailed to the ped office. We came in and the pediatrician used a thin brush to 'scrub' cells from the inside of our son's cheeks. Each DNA test requires a seperate sample. Our pediatrician scrubbed too roughly and it caused bleeding from the cheeks, but it was still better than blood work. Our insurance even paid for most of the tests. Hope this helps you, they have a website www.genedx.com  Pruden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2009 Report Share Posted July 22, 2009 just a quick note - we used a company called geneDx...the tests were done in a normal room at OUR pediatricians office. The ped office called geneDx and set up everything for us, a kit was mailed to the ped office. We came in and the pediatrician used a thin brush to 'scrub' cells from the inside of our son's cheeks. Each DNA test requires a seperate sample. Our pediatrician scrubbed too roughly and it caused bleeding from the cheeks, but it was still better than blood work. Our insurance even paid for most of the tests. Hope this helps you, they have a website www.genedx.com  Pruden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2009 Report Share Posted July 22, 2009 Hi, For genetic testing, it is not invasive. Basically they take 3 large vials of blood via a draw and the results come back in a few weeks. I would not even considre NOT doing genetic testing with PFS, as you cannot get an accurate dx for pfpap w/o ruling out everything else since a pfpap dx is nothing more than a dx of exclusion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2009 Report Share Posted July 22, 2009 Hi, For genetic testing, it is not invasive. Basically they take 3 large vials of blood via a draw and the results come back in a few weeks. I would not even considre NOT doing genetic testing with PFS, as you cannot get an accurate dx for pfpap w/o ruling out everything else since a pfpap dx is nothing more than a dx of exclusion. Quote Link to comment Share on other sites More sharing options...
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