Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 My grandson age 11 non verbal has been a patient for 2 yrs. have been on numerous treatments lots of out of pocket money. Wondering whether to continue this protocol When first started he got better physically(he was very sick) pale, not eating, we actually thought he may not make it. Last testing hid titers are up has been on the same antiviral(famvir since starting this treatment. Dr. G didn`t want to change. He is on Celexa full dose it took app. 9 mths to get to the full dose. I guess are thoughts were he would be more pleasant, happy, sleep thru night, more speech. Right now at this point in treatment we want a happy child that can sleep through the nite function like a little boy should. We hope speech will come eventually . We do not have that. This little boy is difficult to understand we constantly observe while on this med. he is so unpredictable he can be doing good then have a melt down. Most of the time there is no reason for behavior. My daughter called Dr. G. tallked to receptionist he only wants to lower the celexa, she mentioned lexapro to her he was on this at a younger age did well slept through night.He mentioned paxil this drup was a nightmare for him. Has anyone been through thisI am questioning the affect of these SSRI`s on him PLEASE need to talk to someone. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2009 Report Share Posted September 19, 2009 Hi Carole, Our daughter (5-yrs old) is on protocol for 8 months now. We did DAN! for 2 years unsuccessfully first. Interestingly, Dr G had us take our daughter OFF melatonin. We told him she was impossible to get to sleep without it and that even with melatonin she woke up most nights between 2 and 4 am. Relunctanly, we did take her off melatonin and amazingly in about 7-10 days she started sleeping through the night. Of course, it was now taking her more than 1 hour to fall asleep even though she would practically pass out cold on her dinner plate before bed. A few months later we stumbled onto digestive enzymes. We are now giving her these BEFORE food and she is falling asleep in 10-15 minutes AND sleeping through the night! Separately, we are also working through the very tough SSRI options and our daughter has really elevated titers. Hope this helps! Stay strong. - Jim > > I am writing for my daughter My grandson age 11 has had nurmerous treatments since being diagnosed. The protocol we really had our hope this would be the one to help him. Feeling this treatment may not be working for him. > He has been on celexa for 9 mths. this is supposed to get the blood flowing as to help with speech & help inc. melatonin so he could finally get a nights sleep once on the full dose. We were hanging in their thinking this would work. Now at 9 mths on this he is still very irritable now more so than ever not sleeping, no speech has inc. OCD incidences. > He was on Paxil this drug was a nightmare. We were thinking lexapro is a SSRI he was on this while in pre school and slept through the night did well on this. Does anyone know why Dr. G. doesn`t use this drug?. > Last test his titers were up. He is such a difficult case. This little boy is so tired from not sleeping he goes to school cries everyday same time of day 11:00p.m. 1st few days now he is raging very angry. > . Don`t know what to do need to help this child tired of seeing him so unhappy & miserable getting very discouraged with all of this. Need to talk to someone preferrably phone who has been through this. Has anyone been through this this child & family needs help. > Sincerely > Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 I am new to so I am still learning, I don't know anything about the meds used or the reasons why BUT. This little guy probably DOES have reasons for everything he does, nobody knows children the way their parents do-his mom knows what is best for him and she should get as much information as possible and I know this is the hard part but MAKE the doctors listen. I just read McCarthy's book about her journey through autism. I know autism is different than but the point I'm trying to make is this-She knew what was right for her son and if the doctor wouldn't listen to her she made sure she researched and came right back at those doctors. We all need to have faith in our doctors but we also need to have faith in ourselves, when your little guy has a meltdown, look for ANYTHING that may have set him off, chances are if after a couple of times you start probong as to WHY he is melting you will find the answer. My psyc teacher said that children live in the ID stage-the pleasure state-meaning kids just want to do what is fun or makes them feel good and they have no concept of waiting, if they want something or to do something then they want it NOW! Maybe he is melting because he suddenly wants something or to be able to do something and simply doesn't know how to ask for it or get it himself? I feel I've offered no help at all but trust me-if you are determined to help him you are going to succeed. GOOD LUCK Sorry I wasn't more helpful. ________________________________ From: chocolatiluv <chocolatiluv@...> Sent: Thursday, September 17, 2009 10:41:03 AM Subject: Discouraged need support My grandson age 11 non verbal has been a patient for 2 yrs. have been on numerous treatments lots of out of pocket money. Wondering whether to continue this protocol When first started he got better physically(he was very sick) pale, not eating, we actually thought he may not make it. Last testing hid titers are up has been on the same antiviral(famvir since starting this treatment.. Dr. G didn`t want to change. He is on Celexa full dose it took app. 9 mths to get to the full dose. I guess are thoughts were he would be more pleasant, happy, sleep thru night, more speech. Right now at this point in treatment we want a happy child that can sleep through the nite function like a little boy should. We hope speech will come eventually . We do not have that. This little boy is difficult to understand we constantly observe while on this med. he is so unpredictable he can be doing good then have a melt down. Most of the time there is no reason for behavior. My daughter called Dr. G. tallked to receptionist he only wants to lower the celexa, she mentioned lexapro to her he was on this at a younger age did well slept through night.He mentioned paxil this drup was a nightmare for him. Has anyone been through thisI am questioning the affect of these SSRI`s on him PLEASE need to talk to someone. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Keep in mind.many of the kids currently dx'd with " autism " may in fact have . Kristy From: [mailto: ] On Behalf Of Amy Harrell Sent: Thursday, September 24, 2009 10:57 AM Subject: Re: Discouraged need support I am new to so I am still learning, I don't know anything about the meds used or the reasons why BUT. This little guy probably DOES have reasons for everything he does, nobody knows children the way their parents do-his mom knows what is best for him and she should get as much information as possible and I know this is the hard part but MAKE the doctors listen. I just read McCarthy's book about her journey through autism. I know autism is different than but the point I'm trying to make is this-She knew what was right for her son and if the doctor wouldn't listen to her she made sure she researched and came right back at those doctors. We all need to have faith in our doctors but we also need to have faith in ourselves, when your little guy has a meltdown, look for ANYTHING that may have set him off, chances are if after a couple of times you start probong as to WHY he is melting you will find the answer. My psyc teacher said that children live in the ID stage-the pleasure state-meaning kids just want to do what is fun or makes them feel good and they have no concept of waiting, if they want something or to do something then they want it NOW! Maybe he is melting because he suddenly wants something or to be able to do something and simply doesn't know how to ask for it or get it himself? I feel I've offered no help at all but trust me-if you are determined to help him you are going to succeed. GOOD LUCK Sorry I wasn't more helpful. ________________________________ From: chocolatiluv <chocolatiluv@... <mailto:chocolatiluv%40> > <mailto:%40> Sent: Thursday, September 17, 2009 10:41:03 AM Subject: Discouraged need support My grandson age 11 non verbal has been a patient for 2 yrs. have been on numerous treatments lots of out of pocket money. Wondering whether to continue this protocol When first started he got better physically(he was very sick) pale, not eating, we actually thought he may not make it. Last testing hid titers are up has been on the same antiviral(famvir since starting this treatment.. Dr. G didn`t want to change. He is on Celexa full dose it took app. 9 mths to get to the full dose. I guess are thoughts were he would be more pleasant, happy, sleep thru night, more speech. Right now at this point in treatment we want a happy child that can sleep through the nite function like a little boy should. We hope speech will come eventually . We do not have that. This little boy is difficult to understand we constantly observe while on this med. he is so unpredictable he can be doing good then have a melt down. Most of the time there is no reason for behavior. My daughter called Dr. G. tallked to receptionist he only wants to lower the celexa, she mentioned lexapro to her he was on this at a younger age did well slept through night.He mentioned paxil this drup was a nightmare for him. Has anyone been through thisI am questioning the affect of these SSRI`s on him PLEASE need to talk to someone. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Amy, You are on the right track! When kids have /Autism (I think most cases are ), they are stuck in a younger developmental stage and they can't move on until they get better/healthier. It does sound like our kids are stuck in the ID stage, but the truth is, they are having neurological symptoms due to neuroinflammation...I have watched my daughter's neuro symptoms come back when she is introduced to an allergen or she has a virus. On the other hand, my daughter had moderate " autism " over a year ago and today she doesnt. She does have delays but she is catching up! No one ever told me me child was " sick " but I felt it in my gut. I saw it in her...I didnt give up, even though everyone around me thought I was crazy! Now I have her speech therapist saying she thinks my daughter never had autism. WOW, did that make me mad and ecstatic at the same time. Don't give up now! Your child needs you even though you are tired! She is sick and thats why she is acting up! - > > I am new to so I am still learning, I don't know anything about the meds used or the reasons why BUT. This little guy probably DOES have reasons for everything he does, nobody knows children the way their parents do-his mom knows what is best for him and she should get as much information as possible and I know this is the hard part but MAKE the doctors listen. I just read McCarthy's book about her journey through autism. I know autism is different than but the point I'm trying to make is this-She knew what was right for her son and if the doctor wouldn't listen to her she made sure she researched and came right back at those doctors. We all need to have faith in our doctors but we also need to have faith in ourselves, when your little guy has a meltdown, look for ANYTHING that may have set him off, chances are if after a couple of times you start probong as to WHY he is melting you will find the answer. My psyc teacher said that children > live in the ID stage-the pleasure state-meaning kids just want to do what is fun or makes them feel good and they have no concept of waiting, if they want something or to do something then they want it NOW! Maybe he is melting because he suddenly wants something or to be able to do something and simply doesn't know how to ask for it or get it himself? I feel I've offered no help at all but trust me-if you are determined to help him you are going to succeed. GOOD LUCK Sorry I wasn't more helpful. > > > > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > > Sent: Thursday, September 17, 2009 10:41:03 AM > Subject: Discouraged need support > > > > My grandson age 11 non verbal has been a patient for 2 yrs. have been on numerous treatments lots of out of pocket money. > Wondering whether to continue this protocol > When first started he got better physically(he was very sick) pale, not eating, we actually thought he may not make it. > Last testing hid titers are up has been on the same antiviral(famvir since starting this treatment.. Dr. G didn`t want to change. > He is on Celexa full dose it took app. 9 mths to get to the full dose. I guess are thoughts were he would be more pleasant, happy, sleep thru night, more speech. Right now at this point in treatment we want a happy child that can sleep through the nite function like a little boy should. We hope speech will come eventually . We do not have that. > This little boy is difficult to understand we constantly observe while on this med. he is so unpredictable he can be doing good then have a melt down. Most of the time there is no reason for behavior. > My daughter called Dr. G. tallked to receptionist he only wants to lower the celexa, she mentioned lexapro to her he was on this at a younger age did well slept through night.He mentioned paxil this drup was a nightmare for him. > Has anyone been through thisI am questioning the affect of these SSRI`s on him PLEASE need to talk to someone. > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 I am still confused as to what the symptoms are - could someone explain the?diagnosis criteria. Thanks CR Discouraged need support > > ? > > My grandson age 11 non verbal has been a patient for 2 yrs. have been on numerous treatments lots of out of pocket money. > Wondering whether to continue this protocol > When first started he got better physically(he was very sick) pale, not eating, we actually thought he may not make it. > Last testing hid titers are up has been on the same antiviral(famvir since starting this treatment.. Dr. G didn`t want to change. > He is on Celexa full dose it took app. 9 mths to get to the full dose. I guess are thoughts were he would be more pleasant, happy, sleep thru night, more speech. Right now at this point in treatment we want a happy child that can sleep through the nite function like a little boy should. We hope speech will come eventually . We do not have that. > This little boy is difficult to understand we constantly observe while on this med. he is so unpredictable he can be doing good then have a melt down. Most of the time there is no reason for behavior. > My daughter called Dr. G. tallked to receptionist he only wants to lower the celexa, she mentioned lexapro to her he was on this at a younger age did well slept through night.He mentioned paxil this drup was a nightmare for him. > Has anyone been through thisI am questioning the affect of these SSRI`s on him PLEASE need to talk to someone. > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 is right. The exact same thing is happening with my son. JR From: jlhank80@... Date: Fri, 25 Sep 2009 13:29:45 +0000 Subject: Re: Discouraged need support Amy, You are on the right track! When kids have /Autism (I think most cases are ), they are stuck in a younger developmental stage and they can't move on until they get better/healthier. It does sound like our kids are stuck in the ID stage, but the truth is, they are having neurological symptoms due to neuroinflammation...I have watched my daughter's neuro symptoms come back when she is introduced to an allergen or she has a virus. On the other hand, my daughter had moderate " autism " over a year ago and today she doesnt. She does have delays but she is catching up! No one ever told me me child was " sick " but I felt it in my gut. I saw it in her...I didnt give up, even though everyone around me thought I was crazy! Now I have her speech therapist saying she thinks my daughter never had autism. WOW, did that make me mad and ecstatic at the same time. Don't give up now! Your child needs you even though you are tired! She is sick and thats why she is acting up! - > > I am new to so I am still learning, I don't know anything about the meds used or the reasons why BUT. This little guy probably DOES have reasons for everything he does, nobody knows children the way their parents do-his mom knows what is best for him and she should get as much information as possible and I know this is the hard part but MAKE the doctors listen. I just read McCarthy's book about her journey through autism. I know autism is different than but the point I'm trying to make is this-She knew what was right for her son and if the doctor wouldn't listen to her she made sure she researched and came right back at those doctors. We all need to have faith in our doctors but we also need to have faith in ourselves, when your little guy has a meltdown, look for ANYTHING that may have set him off, chances are if after a couple of times you start probong as to WHY he is melting you will find the answer. My psyc teacher said that children > live in the ID stage-the pleasure state-meaning kids just want to do what is fun or makes them feel good and they have no concept of waiting, if they want something or to do something then they want it NOW! Maybe he is melting because he suddenly wants something or to be able to do something and simply doesn't know how to ask for it or get it himself? I feel I've offered no help at all but trust me-if you are determined to help him you are going to succeed. GOOD LUCK Sorry I wasn't more helpful. > > > > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > > Sent: Thursday, September 17, 2009 10:41:03 AM > Subject: Discouraged need support > > > > My grandson age 11 non verbal has been a patient for 2 yrs. have been on numerous treatments lots of out of pocket money. > Wondering whether to continue this protocol > When first started he got better physically(he was very sick) pale, not eating, we actually thought he may not make it. > Last testing hid titers are up has been on the same antiviral(famvir since starting this treatment.. Dr. G didn`t want to change. > He is on Celexa full dose it took app. 9 mths to get to the full dose. I guess are thoughts were he would be more pleasant, happy, sleep thru night, more speech. Right now at this point in treatment we want a happy child that can sleep through the nite function like a little boy should. We hope speech will come eventually . We do not have that. > This little boy is difficult to understand we constantly observe while on this med. he is so unpredictable he can be doing good then have a melt down. Most of the time there is no reason for behavior. > My daughter called Dr. G. tallked to receptionist he only wants to lower the celexa, she mentioned lexapro to her he was on this at a younger age did well slept through night.He mentioned paxil this drup was a nightmare for him. > Has anyone been through thisI am questioning the affect of these SSRI`s on him PLEASE need to talk to someone. > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Hi, . How old is your daughter now, and at what age did you start the protocol? TIA, Robyn ________________________________ From: <jrodrig6605@...> nids Sent: Friday, September 25, 2009 7:07:16 AM Subject: RE: Re: Discouraged need support is right. The exact same thing is happening with my son. JR groups (DOT) com From: jlhank80 (DOT) com Date: Fri, 25 Sep 2009 13:29:45 +0000 Subject: Re: Discouraged need support Amy, You are on the right track! When kids have /Autism (I think most cases are ), they are stuck in a younger developmental stage and they can't move on until they get better/healthier. It does sound like our kids are stuck in the ID stage, but the truth is, they are having neurological symptoms due to neuroinflammation. ..I have watched my daughter's neuro symptoms come back when she is introduced to an allergen or she has a virus. On the other hand, my daughter had moderate " autism " over a year ago and today she doesnt. She does have delays but she is catching up! No one ever told me me child was " sick " but I felt it in my gut. I saw it in her...I didnt give up, even though everyone around me thought I was crazy! Now I have her speech therapist saying she thinks my daughter never had autism. WOW, did that make me mad and ecstatic at the same time. Don't give up now! Your child needs you even though you are tired! She is sick and thats why she is acting up! - > > I am new to so I am still learning, I don't know anything about the meds used or the reasons why BUT. This little guy probably DOES have reasons for everything he does, nobody knows children the way their parents do-his mom knows what is best for him and she should get as much information as possible and I know this is the hard part but MAKE the doctors listen. I just read McCarthy's book about her journey through autism. I know autism is different than but the point I'm trying to make is this-She knew what was right for her son and if the doctor wouldn't listen to her she made sure she researched and came right back at those doctors. We all need to have faith in our doctors but we also need to have faith in ourselves, when your little guy has a meltdown, look for ANYTHING that may have set him off, chances are if after a couple of times you start probong as to WHY he is melting you will find the answer. My psyc teacher said that children > live in the ID stage-the pleasure state-meaning kids just want to do what is fun or makes them feel good and they have no concept of waiting, if they want something or to do something then they want it NOW! Maybe he is melting because he suddenly wants something or to be able to do something and simply doesn't know how to ask for it or get it himself? I feel I've offered no help at all but trust me-if you are determined to help him you are going to succeed. GOOD LUCK Sorry I wasn't more helpful. > > > > > ____________ _________ _________ __ > From: chocolatiluv <chocolatiluv@ ...> > groups (DOT) com > Sent: Thursday, September 17, 2009 10:41:03 AM > Subject: Discouraged need support > > > > My grandson age 11 non verbal has been a patient for 2 yrs. have been on numerous treatments lots of out of pocket money. > Wondering whether to continue this protocol > When first started he got better physically(he was very sick) pale, not eating, we actually thought he may not make it. > Last testing hid titers are up has been on the same antiviral(famvir since starting this treatment.. Dr. G didn`t want to change. > He is on Celexa full dose it took app. 9 mths to get to the full dose. I guess are thoughts were he would be more pleasant, happy, sleep thru night, more speech. Right now at this point in treatment we want a happy child that can sleep through the nite function like a little boy should. We hope speech will come eventually . We do not have that. > This little boy is difficult to understand we constantly observe while on this med. he is so unpredictable he can be doing good then have a melt down. Most of the time there is no reason for behavior. > My daughter called Dr. G. tallked to receptionist he only wants to lower the celexa, she mentioned lexapro to her he was on this at a younger age did well slept through night.He mentioned paxil this drup was a nightmare for him. > Has anyone been through thisI am questioning the affect of these SSRI`s on him PLEASE need to talk to someone. > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Hi Robyn, My daughter is 4 and we have been working with the NNY autism center for a year now. My daughter did Valtrex, Diflucan, and Celexa for a while and Valtrex and Diflucan really helped, but then she became intolerant of the drugs so now we are just working on her allergies, which seems to be her biggest issue. - > > > > I am new to so I am still learning, I don't know anything about the meds used or the reasons why BUT. This little guy probably DOES have reasons for everything he does, nobody knows children the way their parents do-his mom knows what is best for him and she should get as much information as possible and I know this is the hard part but MAKE the doctors listen. I just read McCarthy's book about her journey through autism. I know autism is different than but the point I'm trying to make is this-She knew what was right for her son and if the doctor wouldn't listen to her she made sure she researched and came right back at those doctors. We all need to have faith in our doctors but we also need to have faith in ourselves, when your little guy has a meltdown, look for ANYTHING that may have set him off, chances are if after a couple of times you start probong as to WHY he is melting you will find the answer. My psyc teacher said that > children > > live in the ID stage-the pleasure state-meaning kids just want to do what is fun or makes them feel good and they have no concept of waiting, if they want something or to do something then they want it NOW! Maybe he is melting because he suddenly wants something or to be able to do something and simply doesn't know how to ask for it or get it himself? I feel I've offered no help at all but trust me-if you are determined to help him you are going to succeed. GOOD LUCK Sorry I wasn't more helpful. > > > > > > > > > > ____________ _________ _________ __ > > From: chocolatiluv <chocolatiluv@ ...> > > groups (DOT) com > > Sent: Thursday, September 17, 2009 10:41:03 AM > > Subject: Discouraged need support > > > > > > > > My grandson age 11 non verbal has been a patient for 2 yrs. have been on numerous treatments lots of out of pocket money. > > Wondering whether to continue this protocol > > When first started he got better physically(he was very sick) pale, not eating, we actually thought he may not make it. > > Last testing hid titers are up has been on the same antiviral(famvir since starting this treatment.. Dr. G didn`t want to change. > > He is on Celexa full dose it took app. 9 mths to get to the full dose. I guess are thoughts were he would be more pleasant, happy, sleep thru night, more speech. Right now at this point in treatment we want a happy child that can sleep through the nite function like a little boy should. We hope speech will come eventually . We do not have that. > > This little boy is difficult to understand we constantly observe while on this med. he is so unpredictable he can be doing good then have a melt down. Most of the time there is no reason for behavior. > > My daughter called Dr. G. tallked to receptionist he only wants to lower the celexa, she mentioned lexapro to her he was on this at a younger age did well slept through night.He mentioned paxil this drup was a nightmare for him. > > Has anyone been through thisI am questioning the affect of these SSRI`s on him PLEASE need to talk to someone. > > Carole > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 > > > > I am writing for my daughter My grandson age 11 has had nurmerous treatments since being diagnosed. The protocol we really had our hope this would be the one to help him. Feeling this treatment may not be working for him. > > He has been on celexa for 9 mths. this is supposed to get the blood flowing as to help with speech & help inc. melatonin so he could finally get a nights sleep once on the full dose. We were hanging in their thinking this would work. Now at 9 mths on this he is still very irritable now more so than ever not sleeping, no speech has inc. OCD incidences. > > He was on Paxil this drug was a nightmare. We were thinking lexapro is a SSRI he was on this while in pre school and slept through the night did well on this. Does anyone know why Dr. G. doesn`t use this drug?. > > Last test his titers were up. He is such a difficult case. This little boy is so tired from not sleeping he goes to school cries everyday same time of day 11:00p.m. 1st few days now he is raging very angry. > > . Don`t know what to do need to help this child tired of seeing him so unhappy & miserable getting very discouraged with all of this. Need to talk to someone preferrably phone who has been through this. Has anyone been through this this child & family needs help. > > Sincerely > > Carole > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Hi Carole, I'm sorry your grandson is having such a tough time. We had a tough time with our initial SSRIs also and it made me crazy when Dr. G wanted to up the dose when all we wanted was to stop the meds. We've switched around the SSRIs and the ones that initially were horrible aren't a problem now and the one that worked so well at the beginning made us all crazy when we tried it recently. We've played around with the timing of the some of the other meds (with Dr. G's ok) and the sleeping is better now. It was a problem for a year or more and it seemed like forever. One thing I did notice about the sleeping was when we put her to bed too early, she was up in the middle of the night more frequently. If she goes to bed at about 9:30, she sleeps better. I also felt like she was waking up too often to go to the bathroom so I take her about 30 minutes after she falls asleep and she usually doesn't have to go until morning. I have no idea why this works but it seems to. When we forget she seems to wake up at least 2x in the night to go to the bathroom and stays awake, sometimes for 3 hours. It's horrible for all of us! I forget how far we've come until I read a letter like yours and it makes me remember how tough some of the times were. I hope things get better for you soon. > > > > > ____________ _________ _________ __ > > > From: chocolatiluv <chocolatiluv@ ...> > > > groups (DOT) com > > > Sent: Thursday, September 17, 2009 10:41:03 AM > > > Subject: Discouraged need support > > > > > > > > > > > > My grandson age 11 non verbal has been a patient for 2 yrs. > have been on numerous treatments lots of out of pocket money. > > > Wondering whether to continue this protocol > > > When first started he got better physically(he was very sick) > pale, not eating, we actually thought he may not make it. > > > Last testing hid titers are up has been on the same > antiviral(famvir since starting this treatment.. Dr. G didn`t want to > change. > > > He is on Celexa full dose it took app. 9 mths to get to the full > dose. I guess are thoughts were he would be more pleasant, happy, > sleep thru night, more speech. Right now at this point in treatment we > want a happy child that can sleep through the nite function like a > little boy should. We hope speech will come eventually . We do not > have that. > > > This little boy is difficult to understand we constantly observe > while on this med. he is so unpredictable he can be doing good then > have a melt down. Most of the time there is no reason for behavior. > > > My daughter called Dr. G. tallked to receptionist he only wants to > lower the celexa, she mentioned lexapro to her he was on this at a > younger age did well slept through night.He mentioned paxil this drup > was a nightmare for him. > > > Has anyone been through thisI am questioning the affect of these > SSRI`s on him PLEASE need to talk to someone. > > > Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 My daughter is making huge gains and she does not use an SSRI. They did not work for her as he was laughing one minute and crying the next. Her highs and lows were scary. Sheri --- On Fri, 9/25/09, and Daron Freedberg <mdfreedberg@...> wrote: From: and Daron Freedberg <mdfreedberg@...> Subject: Re: Re: Discouraged need support Date: Friday, September 25, 2009, 11:15 PM Hi Carole, I'm sorry your grandson is having such a tough time. We had a tough time with our initial SSRIs also and it made me crazy when Dr. G wanted to up the dose when all we wanted was to stop the meds. We've switched around the SSRIs and the ones that initially were horrible aren't a problem now and the one that worked so well at the beginning made us all crazy when we tried it recently. We've played around with the timing of the some of the other meds (with Dr. G's ok) and the sleeping is better now. It was a problem for a year or more and it seemed like forever. One thing I did notice about the sleeping was when we put her to bed too early, she was up in the middle of the night more frequently. If she goes to bed at about 9:30, she sleeps better. I also felt like she was waking up too often to go to the bathroom so I take her about 30 minutes after she falls asleep and she usually doesn't have to go until morning. I have no idea why this works but it seems to. When we forget she seems to wake up at least 2x in the night to go to the bathroom and stays awake, sometimes for 3 hours. It's horrible for all of us! I forget how far we've come until I read a letter like yours and it makes me remember how tough some of the times were. I hope things get better for you soon. > > > > > ____________ _________ _________ __ > > > From: chocolatiluv <chocolatiluv@ ...> > > > groups (DOT) com > > > Sent: Thursday, September 17, 2009 10:41:03 AM > > > Subject: Discouraged need support > > > > > > > > > > > > My grandson age 11 non verbal has been a patient for 2 yrs. > have been on numerous treatments lots of out of pocket money. > > > Wondering whether to continue this protocol > > > When first started he got better physically(he was very sick) > pale, not eating, we actually thought he may not make it. > > > Last testing hid titers are up has been on the same > antiviral(famvir since starting this treatment.. Dr. G didn`t want to > change. > > > He is on Celexa full dose it took app. 9 mths to get to the full > dose. I guess are thoughts were he would be more pleasant, happy, > sleep thru night, more speech. Right now at this point in treatment we > want a happy child that can sleep through the nite function like a > little boy should. We hope speech will come eventually . We do not > have that. > > > This little boy is difficult to understand we constantly observe > while on this med. he is so unpredictable he can be doing good then > have a melt down. Most of the time there is no reason for behavior. > > > My daughter called Dr. G. tallked to receptionist he only wants to > lower the celexa, she mentioned lexapro to her he was on this at a > younger age did well slept through night.He mentioned paxil this drup > was a nightmare for him. > > > Has anyone been through thisI am questioning the affect of these > SSRI`s on him PLEASE need to talk to someone. > > > Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Have you read through the .net website? It has a lot of good info. Kristy From: [mailto: ] On Behalf Of Richtfamily5@... Sent: Friday, September 25, 2009 6:52 AM Subject: Re: Re: Discouraged need support I am still confused as to what the symptoms are - could someone explain the?diagnosis criteria. Thanks CR Discouraged need support > > ? > > My grandson age 11 non verbal has been a patient for 2 yrs. have been on numerous treatments lots of out of pocket money. > Wondering whether to continue this protocol > When first started he got better physically(he was very sick) pale, not eating, we actually thought he may not make it. > Last testing hid titers are up has been on the same antiviral(famvir since starting this treatment.. Dr. G didn`t want to change. > He is on Celexa full dose it took app. 9 mths to get to the full dose. I guess are thoughts were he would be more pleasant, happy, sleep thru night, more speech. Right now at this point in treatment we want a happy child that can sleep through the nite function like a little boy should. We hope speech will come eventually . We do not have that. > This little boy is difficult to understand we constantly observe while on this med. he is so unpredictable he can be doing good then have a melt down. Most of the time there is no reason for behavior. > My daughter called Dr. G. tallked to receptionist he only wants to lower the celexa, she mentioned lexapro to her he was on this at a younger age did well slept through night.He mentioned paxil this drup was a nightmare for him. > Has anyone been through thisI am questioning the affect of these SSRI`s on him PLEASE need to talk to someone. > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 --- In , and Daron Freedberg <mdfreedberg@...> wrote: > > Hi Carole, > I'm sorry your grandson is having such a tough time. We had a tough > time with our initial SSRIs also and it made me crazy when Dr. G wanted > to up the dose when all we wanted was to stop the meds. We've switched > around the SSRIs and the ones that initially were horrible aren't a > problem now and the one that worked so well at the beginning made us all > crazy when we tried it recently. We've played around with the timing of > the some of the other meds (with Dr. G's ok) and the sleeping is better > now. It was a problem for a year or more and it seemed like forever. > One thing I did notice about the sleeping was when we put her to bed too > early, she was up in the middle of the night more frequently. If she > goes to bed at about 9:30, she sleeps better. I also felt like she was > waking up too often to go to the bathroom so I take her about 30 minutes > after she falls asleep and she usually doesn't have to go until > morning. I have no idea why this works but it seems to. When we forget > she seems to wake up at least 2x in the night to go to the bathroom and > stays awake, sometimes for 3 hours. It's horrible for all of us! I > forget how far we've come until I read a letter like yours and it makes > me remember how tough some of the times were. I hope things get better > for you soon. > > > > >Sherri & Thanks for your answers. How old are your children? what SSRI is working for you child now? Sheri what was the final straw for you to stop the SSRI`s? how long was your child on this treatment what is working for your child now? My grandson in past yr.has been on paxil 2mths nightmare for him, Celexa 9 mths major headaches, not sleeping,speech no difference only positive was more aware. Now Zoloft been on this only 2 days so far sleep no difference happier but this could change praying this will be the one. I guess we need to see light at the end of all this. Thanks all for you replies. Carole > > > > ____________ _________ _________ __ > > > > From: chocolatiluv <chocolatiluv@ ...> > > > > groups (DOT) com > > > > Sent: Thursday, September 17, 2009 10:41:03 AM > > > > Subject: Discouraged need support > > > > > > > > > > > > > > > > My grandson age 11 non verbal has been a patient for 2 yrs. > > have been on numerous treatments lots of out of pocket money. > > > > Wondering whether to continue this protocol > > > > When first started he got better physically(he was very sick) > > pale, not eating, we actually thought he may not make it. > > > > Last testing hid titers are up has been on the same > > antiviral(famvir since starting this treatment.. Dr. G didn`t want to > > change. > > > > He is on Celexa full dose it took app. 9 mths to get to the full > > dose. I guess are thoughts were he would be more pleasant, happy, > > sleep thru night, more speech. Right now at this point in treatment we > > want a happy child that can sleep through the nite function like a > > little boy should. We hope speech will come eventually . We do not > > have that. > > > > This little boy is difficult to understand we constantly observe > > while on this med. he is so unpredictable he can be doing good then > > have a melt down. Most of the time there is no reason for behavior. > > > > My daughter called Dr. G. tallked to receptionist he only wants to > > lower the celexa, she mentioned lexapro to her he was on this at a > > younger age did well slept through night.He mentioned paxil this drup > > was a nightmare for him. > > > > Has anyone been through thisI am questioning the affect of these > > SSRI`s on him PLEASE need to talk to someone. > > > > Carole > > > Quote Link to comment Share on other sites More sharing options...
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