Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Colleen The swallowing and problems are pretty common on this board, I believe. My father-in-law has not had much in the way of swallowing problems yet but I think we are headed in that direction. One book I have read recently that I found very inspirational on " what to say " when our LOs are agitated, confused, etc. is " Talking to Alzheimers " by Strauss. Here it is on Amazon (forgive the plug): http://www.amazon.com/exec/obidos/ASIN/1572242701/ref=cm_mp_etc/104-7756981- 8490362 It is very practical and includes sections on dealing with anger, tears, etc. all the way up to helpful hints on how to reword question to make it easy for the LO to stay in the conversation. I don't know if I've mentioned it on the board before. If I have forgive me (yikes, memory loss). Christie At 21:07 6/18/02 -0500, you wrote: > I suppose I really want to know is what to expect next in the > > > Does anyone > have suggestions to calm them when they are so aggitated? > > Colleen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Colleen Welcome to a group with many stories, experiences, and heartfelt replies. I have noticed my dad is having trouble swallowing liquids....he is choking on them easily. I know from testing that food or liquids taken in can be asperated into the lungs....causing asperation pheumonia. This is always a concern as my dad has experienced it before. As for calming during hallucinations, I reassure my dad. I confirm what he is seeing, even though he can't tell me what is there, I just know he isn't looking at me and something else is agitating him. I tell him how I realize how he must be scared and frustrated. Also, if we can just turn away then maybe what he is seeing will go away. Also, many times I tell him it will be ok, that I am going through it with him and we will both be ok. Best of luck to you, and I will add you to my list of prayers. When all else seems to fail, pray! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Sorry to hear that your mother is so advanced in the disease. My only suggestion is to look at her meds and see if any of them are causing agitation and to communicate with her doctors. Unforunately, with this disease, you may need to do a lot of the research yourself. Perhaps you could list ALL her meds to us and some might stand out. She also may benifit from very gentle physical therapy. Perhaps covered now my Medicare since they have added it to the dementia diagnosis. Imelda To learn more about Lewy Body Disase, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Hi Colleen, We just entered Home Health because my husband suddenly lost his ability to walk. He doesn't have the swallowing or lung problems. The med that has helped my husband the most with the hallucinations is Exelon - even a low dose may help (my husband takes the 4.5 mg size mixed in a little peach juice). If he misses a dose he has a lot of problems with the hallucinations. We recently started sinemet in a very low dose (10/100) and my husband can tolerate 2 tablets a half at a time throughout the day (it also causes hallunation problems). It seems to ease his stiffness/pain and he can stand for a short time (long enough for me to be able to bathe his backside a couple times a day). ~lula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 In a message dated 6/18/02 9:07:24 PM Central Daylight Time, liebhart@... writes: > My question is - will this disease effect her swallowing skills and lung > function. Hello and welcome, Colleen. Sorry to hear what is happening to your mother and that she has osteoporosis as well. To answer your question, it is our experience here that the poor posture will indeed effect her breathing and swallowing. My husband's Parkinsonism is quite pronounced and he occasionally complains of difficulty swallowing. Also, the compression of the internal organs due to poor posture renders them less than fully functional. His physician told me some years ago that respiratory problems are the usual cause of death for individuals afflicted in this manner. Is your mother in any kind of physical therapy? My husband is and it is helping him considerably. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 In a message dated 6/18/02 9:07:24 PM Central Daylight Time, liebhart@... writes: > My question is - will this disease effect her swallowing skills and lung > function. Hello and welcome, Colleen. Sorry to hear what is happening to your mother and that she has osteoporosis as well. To answer your question, it is our experience here that the poor posture will indeed effect her breathing and swallowing. My husband's Parkinsonism is quite pronounced and he occasionally complains of difficulty swallowing. Also, the compression of the internal organs due to poor posture renders them less than fully functional. His physician told me some years ago that respiratory problems are the usual cause of death for individuals afflicted in this manner. Is your mother in any kind of physical therapy? My husband is and it is helping him considerably. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Thanks for the response. They are planning to start physical therapy again to see if she responds. She is so advanced into the disease that she does not respond well to the therapist anymore. This did help last summer at a time when she stopped walking. She started walking again with the therapist help, but this time it appears more severe with the dementia. We have had it recently diagnoised, but have been experiencing the effects of the disease for at least 5 years. This time the decline seems permanent. However she moved herself from the wheel chair to a living room chair when no one was watching! We don't know how she made it without falling. She was not walked in weeks. She did fall a week ago when she tired something similar. The doctor is trying her on a new medicine and will start therapy with this medicine if she seems to tolerate the low dosage of this medicine. I will need to write down the type of medicine to share. I think it must be a fairly new medicine, because the doctor is interested in her success and will give it to others based on her experience. She is starting to loose bathrooming skills. I suppose I want to know how low she will go with this disease before passing. She is in such poor total health that I think each week is her last. Thanks for sharing with me. Colleen Re: question In a message dated 6/18/02 9:07:24 PM Central Daylight Time, liebhart@... writes: > My question is - will this disease effect her swallowing skills and lung > function. Hello and welcome, Colleen. Sorry to hear what is happening to your mother and that she has osteoporosis as well. To answer your question, it is our experience here that the poor posture will indeed effect her breathing and swallowing. My husband's Parkinsonism is quite pronounced and he occasionally complains of difficulty swallowing. Also, the compression of the internal organs due to poor posture renders them less than fully functional. His physician told me some years ago that respiratory problems are the usual cause of death for individuals afflicted in this manner. Is your mother in any kind of physical therapy? My husband is and it is helping him considerably. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Thanks for the response. They are planning to start physical therapy again to see if she responds. She is so advanced into the disease that she does not respond well to the therapist anymore. This did help last summer at a time when she stopped walking. She started walking again with the therapist help, but this time it appears more severe with the dementia. We have had it recently diagnoised, but have been experiencing the effects of the disease for at least 5 years. This time the decline seems permanent. However she moved herself from the wheel chair to a living room chair when no one was watching! We don't know how she made it without falling. She was not walked in weeks. She did fall a week ago when she tired something similar. The doctor is trying her on a new medicine and will start therapy with this medicine if she seems to tolerate the low dosage of this medicine. I will need to write down the type of medicine to share. I think it must be a fairly new medicine, because the doctor is interested in her success and will give it to others based on her experience. She is starting to loose bathrooming skills. I suppose I want to know how low she will go with this disease before passing. She is in such poor total health that I think each week is her last. Thanks for sharing with me. Colleen Re: question In a message dated 6/18/02 9:07:24 PM Central Daylight Time, liebhart@... writes: > My question is - will this disease effect her swallowing skills and lung > function. Hello and welcome, Colleen. Sorry to hear what is happening to your mother and that she has osteoporosis as well. To answer your question, it is our experience here that the poor posture will indeed effect her breathing and swallowing. My husband's Parkinsonism is quite pronounced and he occasionally complains of difficulty swallowing. Also, the compression of the internal organs due to poor posture renders them less than fully functional. His physician told me some years ago that respiratory problems are the usual cause of death for individuals afflicted in this manner. Is your mother in any kind of physical therapy? My husband is and it is helping him considerably. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Thanks for the response. They are planning to start physical therapy again to see if she responds. She is so advanced into the disease that she does not respond well to the therapist anymore. This did help last summer at a time when she stopped walking. She started walking again with the therapist help, but this time it appears more severe with the dementia. We have had it recently diagnoised, but have been experiencing the effects of the disease for at least 5 years. This time the decline seems permanent. However she moved herself from the wheel chair to a living room chair when no one was watching! We don't know how she made it without falling. She was not walked in weeks. She did fall a week ago when she tired something similar. The doctor is trying her on a new medicine and will start therapy with this medicine if she seems to tolerate the low dosage of this medicine. I will need to write down the type of medicine to share. I think it must be a fairly new medicine, because the doctor is interested in her success and will give it to others based on her experience. She is starting to loose bathrooming skills. I suppose I want to know how low she will go with this disease before passing. She is in such poor total health that I think each week is her last. Thanks for sharing with me. Colleen Re: question In a message dated 6/18/02 9:07:24 PM Central Daylight Time, liebhart@... writes: > My question is - will this disease effect her swallowing skills and lung > function. Hello and welcome, Colleen. Sorry to hear what is happening to your mother and that she has osteoporosis as well. To answer your question, it is our experience here that the poor posture will indeed effect her breathing and swallowing. My husband's Parkinsonism is quite pronounced and he occasionally complains of difficulty swallowing. Also, the compression of the internal organs due to poor posture renders them less than fully functional. His physician told me some years ago that respiratory problems are the usual cause of death for individuals afflicted in this manner. Is your mother in any kind of physical therapy? My husband is and it is helping him considerably. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2002 Report Share Posted June 22, 2002 In a message dated 6/21/02 2:37:49 PM Central Daylight Time, liebhart@... writes: > She is so advanced into the disease that she does not respond well to the > therapist anymore. Hi, Colleen, It was looking that way here for awhile, too. Unable to understand or follow directions. But with ongoing PT and OT I see improved cognition, too. The massage therapist once told me that the phsycial manipulations that go with massage and PT help to release the " feel good and think better " enzymes in the brain. So once finished with PT it will be back to massage therapy and exercise class. I know he will crash again and again, but just keeping my fingers crossed for now. I find it interesting that your mother was able to move herself from wheelchair to couch on her own. I've seen that before and marvelled. :-) As far as " how low will she go " before it is all over, that will depend on her and her other health problems. For those in otherwise good general health, deterioration can result in total, global incapacity in which the patient is unable to do anything at all for themselves and becomes oblivious to their surroundings. I hope my husband goes before reaching that stage. I'm sorry for the tightrope you are walking on a weekly basis. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2002 Report Share Posted June 22, 2002 In a message dated 6/21/02 2:37:49 PM Central Daylight Time, liebhart@... writes: > She is so advanced into the disease that she does not respond well to the > therapist anymore. Hi, Colleen, It was looking that way here for awhile, too. Unable to understand or follow directions. But with ongoing PT and OT I see improved cognition, too. The massage therapist once told me that the phsycial manipulations that go with massage and PT help to release the " feel good and think better " enzymes in the brain. So once finished with PT it will be back to massage therapy and exercise class. I know he will crash again and again, but just keeping my fingers crossed for now. I find it interesting that your mother was able to move herself from wheelchair to couch on her own. I've seen that before and marvelled. :-) As far as " how low will she go " before it is all over, that will depend on her and her other health problems. For those in otherwise good general health, deterioration can result in total, global incapacity in which the patient is unable to do anything at all for themselves and becomes oblivious to their surroundings. I hope my husband goes before reaching that stage. I'm sorry for the tightrope you are walking on a weekly basis. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 I appreciate all the feedback I am receiving on my questions. I am sharing these with my sister as well. You are helping more than you know. It is difficult getting questions answered. I assume because there really are not many answers. Just having a sounding board helps. Thanks to all. Colleen Re: question In a message dated 6/21/02 2:37:49 PM Central Daylight Time, liebhart@... writes: > She is so advanced into the disease that she does not respond well to the > therapist anymore. Hi, Colleen, It was looking that way here for awhile, too. Unable to understand or follow directions. But with ongoing PT and OT I see improved cognition, too. The massage therapist once told me that the phsycial manipulations that go with massage and PT help to release the " feel good and think better " enzymes in the brain. So once finished with PT it will be back to massage therapy and exercise class. I know he will crash again and again, but just keeping my fingers crossed for now. I find it interesting that your mother was able to move herself from wheelchair to couch on her own. I've seen that before and marvelled. :-) As far as " how low will she go " before it is all over, that will depend on her and her other health problems. For those in otherwise good general health, deterioration can result in total, global incapacity in which the patient is unable to do anything at all for themselves and becomes oblivious to their surroundings. I hope my husband goes before reaching that stage. I'm sorry for the tightrope you are walking on a weekly basis. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 Question: My sister and brother in law think that Dad gets sharper after food. They say that they have recently noticed that Dad could be foggy all day and then he has a meal and he gets energy, starts talking and is making a lot of sense. Does this ring a bell for anyone? Also, Dad wasn't diagnosed until last week. Before then he was on Zoloft for depression, then aricept with the zoloft. Then about 3 months ago, a doctor took him off of everything to see if drugs were causing his parkinsonism tremors. Well when he went back to this particular doctor, the doctor asked " How's it going with the increased zoloft dose? " Well this frightened both Mom and Dad because the doctor didn't remember that he took Dad off of all his drugs. Even daytril for his enlarged prostrate. That's when they decided to get a new doc and they headed off to Cleveland Clinic. The doc at Cleveland Clinic hasn't put him on any meds yet. He said that they will wait until after he has some tests done to determine how far along Dad is in this disease. But he did say that Dad would probably be going back on the aricept. Now in Dad's confusion, he started taking the aricept a few days ago while in NY visiting my sister. My Mom noticed and reminded him that he shouldn't be taking anything just yet. So he stopped and Mom hid the pills. How bad is it for Dad to be on aricept for a few days and then off? Any clues? Also, Dad likes to have an occassional glass of wine with dinner. Nobody says anything because we feel like everything else including driving has been taken away from him. Does anyone know if this is harmful? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 , I would ask the doctor about the wine before saying anything. Some meds are seriously affected when alcohol is presented into the blood stream. As for the Aricept, I would also tell the doctor that he did take some, however, that is a drug that does take time some to build up, so I wouldn't think he caused much harm there. Good luck! Re: Question Question: My sister and brother in law think that Dad gets sharper after food. They say that they have recently noticed that Dad could be foggy all day and then he has a meal and he gets energy, starts talking and is making a lot of sense. Does this ring a bell for anyone? Also, Dad wasn't diagnosed until last week. Before then he was on Zoloft for depression, then aricept with the zoloft. Then about 3 months ago, a doctor took him off of everything to see if drugs were causing his parkinsonism tremors. Well when he went back to this particular doctor, the doctor asked " How's it going with the increased zoloft dose? " Well this frightened both Mom and Dad because the doctor didn't remember that he took Dad off of all his drugs. Even daytril for his enlarged prostrate. That's when they decided to get a new doc and they headed off to Cleveland Clinic. The doc at Cleveland Clinic hasn't put him on any meds yet. He said that they will wait until after he has some tests done to determine how far along Dad is in this disease. But he did say that Dad would probably be going back on the aricept. Now in Dad's confusion, he started taking the aricept a few days ago while in NY visiting my sister. My Mom noticed and reminded him that he shouldn't be taking anything just yet. So he stopped and Mom hid the pills. How bad is it for Dad to be on aricept for a few days and then off? Any clues? Also, Dad likes to have an occassional glass of wine with dinner. Nobody says anything because we feel like everything else including driving has been taken away from him. Does anyone know if this is harmful? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 In a message dated 8/7/02 10:23:49 AM Central Daylight Time, katiemc10@... writes: > How bad is it for Dad to be on aricept for a few days and then off? Any > clues? , I doubt that a few days and then off will cause him any trouble. It takes 3 months for the med to kick in to begin with. As for wine, speaking just for my husband's Sinemet and Aricept, the doctors said a glass or two of wine won't do any harm as there is no interaction between those meds and alcohol. Your dad's other meds, though - I would check with the doctor or a pharmacist. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 Cheryl, Our doctor, plus the literature for the medications I have read, stated that Joe should not mix alcohol with them.?? It particular accents that with Exelon and I do not believe Aricept would be much different. Eve Re: Question In a message dated 8/7/02 10:23:49 AM Central Daylight Time, katiemc10@... writes: > How bad is it for Dad to be on aricept for a few days and then off? Any > clues? , I doubt that a few days and then off will cause him any trouble. It takes 3 months for the med to kick in to begin with. As for wine, speaking just for my husband's Sinemet and Aricept, the doctors said a glass or two of wine won't do any harm as there is no interaction between those meds and alcohol. Your dad's other meds, though - I would check with the doctor or a pharmacist. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 >Also, Dad likes to have an occassional glass of wine with dinner. Nobody >says anything because we feel like everything else including driving has >been taken away from him. Does anyone know if this is harmful? > >Thanks, > > We actually heard a few months ago that wine is somewhat good for you. Don't remember the specifics. I know we all went right to our kitchen and poured a glass for ourselves. But once he gets back on his medication be sure to check with the doctor and or pharmasist. Also, make sure you have one for yourself too. Shirley _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Thanks Shirley! Sounds like good advice to me =0) Shirley L wrote: > > >Also, Dad likes to have an occassional glass of wine with dinner. Nobody > >says anything because we feel like everything else including driving has > >been taken away from him. Does anyone know if this is harmful? > > > >Thanks, > > > > > We actually heard a few months ago that wine is somewhat good for you. > Don't > remember the specifics. I know we all went right to our kitchen and > poured a > glass for ourselves. But once he gets back on his medication be sure to > check with the doctor and or pharmasist. Also, make sure you have one for > yourself too. Shirley > > > > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: http://mobile.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 In a message dated 8/7/02 11:51:44 PM Central Daylight Time, dashe@... writes: > do not believe Aricept would be much different. > Two physicians and a pharmacist have said there is no alcohol interaction with Aricept. I can believe it might be otherwise with Exelon. In fact, the Cognitive Neurologist said he should enjoy his glass or two a day, and the PCP wondered why he wasn't allowed any during the first year. The reason was to give ample opportunity for Cognitive Neurologist to assess how the meds were working, without complications. Of course, if he was drinking excessive amounts it would be a problem, even without medications. As you know, Eve, I am EXTREMELY happy with the care we have received from the Cog Neuro, as well as that PCP. Meanwhile, the newest PCP, with whom I am also very happy, is of the opinion that if the scotch and/or wine don't interact with the meds, then why should he be denied. I am also aware that ALL meds that we get carry the warning to not mix with alcohol. I treat that as a " don't take with alcohol " and check with the pharmacist with anything new. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Hello all, I have a question. I know alot of children have trouble with sleeping issues. What do you all do to get some rest? My son Jorden is up all the time. He doesnt sleep even during the day. He is 2 now and l think since he has been born l have only slept through the night maybe a dozen times. I would like to know what you all do to get some sleep at night. I dont like to let him cry very long. He gets himself very worked up then he is in a bad mood the rest of the day. Any suggestions would be helpful. Marilyn Jorden's mom > > So sorry to hear that Crystal is in the > hospital again. I know this is so > hard on you. Remember to take care of > yourself, too. > Lana, 's mom > > > [Non-text portions of this message have been > removed] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Hello all, I have a question. I know alot of children have trouble with sleeping issues. What do you all do to get some rest? My son Jorden is up all the time. He doesnt sleep even during the day. He is 2 now and l think since he has been born l have only slept through the night maybe a dozen times. I would like to know what you all do to get some sleep at night. I dont like to let him cry very long. He gets himself very worked up then he is in a bad mood the rest of the day. Any suggestions would be helpful. Marilyn Jorden's mom > > So sorry to hear that Crystal is in the > hospital again. I know this is so > hard on you. Remember to take care of > yourself, too. > Lana, 's mom > > > [Non-text portions of this message have been > removed] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Hi Marilyn, Timon was born 5.5 years ago, than came Caspar now nearly 4 and Sophie the last one who just turned 2. Usually there is always one who wakes up at night, I often have to change Timon and Sophie wakes up every night. She wants nothing, most of the time, but just starts speaking etc, so I do wake up. Fortunately she falls a sleep again alone. So sleeping through the night was and is for me too something very rare. My husband will sleep through everything, so even if he would get up, I have to wake him up and that does not make much sence. I tried to sleep in the top store of our house and the kids + husband ( who takes care if there is anything, if he wakes up) sleep one floor lower. As my hubby does not wake up that fast I usually would be woken up anyway. So I once in a while go and stay for a night with a friend. I go there when the kids are in bed and than I usually fall a sleep straight away. When I wake up in the morning I go home again and feel much better. Who knows you might be able to do that as well. Take care, Bianca rothamellee@... wrote: > Hello all, > I have a question. I know alot of children have trouble with sleeping > issues. > What do you all do to get some rest? My son Jorden is up all the time. He > doesnt sleep even during the day. He is 2 now and l think since he has > been > born l have only slept through the night maybe a dozen times. I would > like to > know what you all do to get some sleep at night. I dont like to let > him cry > very long. He gets himself very worked up then he is in a bad mood the > rest of > the day. Any suggestions would be helpful. > Marilyn Jorden's mom > > > > > > > So sorry to hear that Crystal is in the > > hospital again. I know this is so > > hard on you. Remember to take care of > > yourself, too. > > Lana, 's mom > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Hi Marilyn, Timon was born 5.5 years ago, than came Caspar now nearly 4 and Sophie the last one who just turned 2. Usually there is always one who wakes up at night, I often have to change Timon and Sophie wakes up every night. She wants nothing, most of the time, but just starts speaking etc, so I do wake up. Fortunately she falls a sleep again alone. So sleeping through the night was and is for me too something very rare. My husband will sleep through everything, so even if he would get up, I have to wake him up and that does not make much sence. I tried to sleep in the top store of our house and the kids + husband ( who takes care if there is anything, if he wakes up) sleep one floor lower. As my hubby does not wake up that fast I usually would be woken up anyway. So I once in a while go and stay for a night with a friend. I go there when the kids are in bed and than I usually fall a sleep straight away. When I wake up in the morning I go home again and feel much better. Who knows you might be able to do that as well. Take care, Bianca rothamellee@... wrote: > Hello all, > I have a question. I know alot of children have trouble with sleeping > issues. > What do you all do to get some rest? My son Jorden is up all the time. He > doesnt sleep even during the day. He is 2 now and l think since he has > been > born l have only slept through the night maybe a dozen times. I would > like to > know what you all do to get some sleep at night. I dont like to let > him cry > very long. He gets himself very worked up then he is in a bad mood the > rest of > the day. Any suggestions would be helpful. > Marilyn Jorden's mom > > > > > > > So sorry to hear that Crystal is in the > > hospital again. I know this is so > > hard on you. Remember to take care of > > yourself, too. > > Lana, 's mom > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Hi Marilyn, Timon was born 5.5 years ago, than came Caspar now nearly 4 and Sophie the last one who just turned 2. Usually there is always one who wakes up at night, I often have to change Timon and Sophie wakes up every night. She wants nothing, most of the time, but just starts speaking etc, so I do wake up. Fortunately she falls a sleep again alone. So sleeping through the night was and is for me too something very rare. My husband will sleep through everything, so even if he would get up, I have to wake him up and that does not make much sence. I tried to sleep in the top store of our house and the kids + husband ( who takes care if there is anything, if he wakes up) sleep one floor lower. As my hubby does not wake up that fast I usually would be woken up anyway. So I once in a while go and stay for a night with a friend. I go there when the kids are in bed and than I usually fall a sleep straight away. When I wake up in the morning I go home again and feel much better. Who knows you might be able to do that as well. Take care, Bianca rothamellee@... wrote: > Hello all, > I have a question. I know alot of children have trouble with sleeping > issues. > What do you all do to get some rest? My son Jorden is up all the time. He > doesnt sleep even during the day. He is 2 now and l think since he has > been > born l have only slept through the night maybe a dozen times. I would > like to > know what you all do to get some sleep at night. I dont like to let > him cry > very long. He gets himself very worked up then he is in a bad mood the > rest of > the day. Any suggestions would be helpful. > Marilyn Jorden's mom > > > > > > > So sorry to hear that Crystal is in the > > hospital again. I know this is so > > hard on you. Remember to take care of > > yourself, too. > > Lana, 's mom > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Dear Meredith Our son is only unilateral (on the left side) but as he is only 6 months old and was only diagnosed 3 months ago we are in the dark as much as you are! In fact really, this is just a message of support and to say that we too would be interested in hearing any other unilateral experiences. Take care Question It's been a long while since I have read any of the messages much less post any so bear with me but I have some questions I am hoping that you all can help me with. My son Reese is just turning 18 months old. He was diagnosed with unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We didn't receive his Polymicrogyria diagnosis until he was 7 months old. It's been almost a year now and I still feel like I am in the dark. I have email Dr. Dobbins and he agreed to review my son's MRI films and medical records for his geneticist but I never heard anything further from him. All I can tell you all is that my son's right frontal and temporal lobes are affected which is causing him to have difficulty using his left arm, hand and sometimes leg. He has some balance issues and speech difficulties (still only says Da-Da, figures huh?). He still isn't sitting up on his own (almost there but not there yet) much less walking, standing and you can forget crawling. No seisures yet and we have a some recent success with sign language (just eat and more but we will gladly take it). Here is my biggest question, Is there anyone else in this group that has a child with only one side and a couple of lobes effected? If so, I am curious as to how this diagnosis is effecting your child? I am primarily trying to gage my son's mental abilites so far and also I am interested in preparing myself for what to expect. I realize that there is no way to predict the outcome for my child but still as you all must understand I am trying my best to brace myself for the potential outcome. I hate that there is so little information available on this topic. I pray that you all can shead some light on the subject. Thanks in advance, Meredith Fisher Quote Link to comment Share on other sites More sharing options...
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