Guest guest Posted March 8, 1999 Report Share Posted March 8, 1999 Dear : Call your local colleges and ask them if they have an advocate for you. You should also have someone in charge of special ed. for your district who should be going to meetings with you. My daughter is on a 504 plan. It helped when I delivered some papers to each of her teachers regarding school and ocd. I will give that to you at the end of this email. Demand updates at least once a month where you, the teachers, the counselor, the special ed. district person, and your child attend. This has been helpful for us. Also weekly I get a progress report so that I know that my child is cooperating as well. Good luck. Sheree <A HREF= " http://www.fairlite.com/ocd/articles/school.shtml " >School Personnel: A Critical Link</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 1999 Report Share Posted March 8, 1999 Hi , I'm not sure what is available in Ca. but you may want to check under http://www.schoolwisepress.com/ They have a section on Parent Advocacy and other interesting sections. Actually I believe there is an ASK AN EXPERT section under the site contents. Let me know if you still can't find anything. I can phone my mom in law and get more info from her. She is quite knowledgeable on school education rights in southern california, san diego in particular. Take care and good luck, Kay D. (AlilNutty) kdugan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 1999 Report Share Posted March 8, 1999 Hi Kay! Would like to get into contact with your mom-in-law; we live in San Diego jjmcf@... Jim McFerrin Thanks Jim Re: HELP >From: Kay <alilnutty@...> > >Hi , > >I'm not sure what is available in Ca. but you may want to check under > >http://www.schoolwisepress.com/ > >They have a section on Parent Advocacy and other interesting sections. > Actually I believe there is an ASK AN EXPERT section under the site >contents. Let me know if you still can't find anything. I can phone >my mom in law and get more info from her. She is quite knowledgeable >on school education rights in southern california, san diego in >particular. > >Take care and good luck, >Kay D. (AlilNutty) >kdugan@... > > > > > > > >------------------------------------------------------------------------ >Have you visited our new web site? > >Onelist: Helping to create Internet communities >------------------------------------------------------------------------ >The is sponsored by the OCSDA. You may visit their web site at http://www.ocdhelp.org/ and view schedules for chatroom support at http://www.ocdhelp.org/chat.html > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 1999 Report Share Posted March 8, 1999 Hello , I had the same trouble. You need to first call the special services department of your local school board and ask for the guidlines for 504. Next, you need to meet with your school principal and 504 coordinator for the school. It is a Federal mandate that schools follow the 504 plan that you have completed. The school system can lose federal funds and get into a lot of trouble for not cooperating. Keep us posted and let us know what is happening. wrote: > From: <mikeinglen@...> > > Our son has OCD and slight ADD. We are having trouble with the school. > They are doing everything to convince us of course that he is fine, and > have gone so far as to call him a " spoiled child " , who only likes being in > special classes because he can gloat to the other kids. GIVE me A BREAK! > He is in speech and adaptive PE but that will go nowhere to pull him out of > the dive he is in do to the school's refusal to address the issue. > > We have a 504 plan that is not being upheld. Now that we are more in the > know, we tend to notice we are being treated less and less kindly. > > We need an Advocate. We need someone to accompany us to the meetings that > know all the loop holes that the school is trying to shovel on us. Where > can we find such a person, organization, in the Southern CA area? PLEASE > HELP! Our boy's Psychiatrist has referred us to one group, but they are > way too expensive. Because this is a " Mental Disorder " our insurance > covers very little. ANY ideas? > > > > ------------------------------------------------------------------------ > New hobbies? New curiosities? New enthusiasms? > > Sign up for a new email list today > ------------------------------------------------------------------------ > The is sponsored by the OCSDA. You may visit their web site at http://www.ocdhelp.org/ and view schedules for chatroom support at http://www.ocdhelp.org/chat.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Dear List: I subscribe to the OcdL list as well and read the ocdspouse list too. I need to vent and wondered where the best place would be and decided it should be here. My desperate feelings are one of a parent so perhaps you guys may understand. I am so frustrated. I feel I have done all I can do for my l6 year old daughter. She continues to have little motivation and I just don't know if its ocd or idc (I don't care). Even the teachers are unsure. We had her put on a 504 plan and this was several weeks ago. Although it seems as if its helping, since that time she has cut school, gone late to classes,and now it seems as if she is developing an eating disorder. I just don't get it anymore. She was provided with tapes for books, oral testing, etc. I am at a loss as to if this is her teenage behavior or her ocd. She will tell me all work is done but then I get progress reports that say that homework is missing. Drs. and educators say not to punish her for failing tests cause it will only exacerbate things. So, instead she is punished for not telling the truth. I am exhausted mentally. Last week she fainted from not eating. I thought it to be an isolated incident but today I got a call from a teacher saying she looked awful and hadn't eaten. (She told me she had) She also says that she is not hungry. She takes prozac. I feel like I cannot take another issue to deal with. She sees a therapist and is given cbt to do but usually won't do it at home as she is supposed to. I don't know whether to see another psychiatrist, another psychologist, a cardiologist (I forgot to mention she had a racing heart the week before and was tested) I feel so sad and angry. Sorry for rambling on and on but I just needed to talk. Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Sheree, It sounds to me a combination of teenage years and OCD. Teen years are hard for a " normal " child. Combine that with OCD and you have double misery. I have a fifteen year old daughter that does not have OCD, but she has had depression for several years. She has been on zoloft for 3 years and has also been through 3 years of counceling. She has torn our hearts out many times. If you haven't already, I'd find a Psychiatrist who speciializes in adolescence. My son who has OCD was doing the same things that your daughter is doing. He would tell me that his assignments were complete and then I would get an awful progress report because assignments weren't turned in. I later discovered that because of the OCD he was totally dysfunctional at school. By noon each day, he was having anxiety attacks. He refused to even go to the bathroom at school. He was starving himself so he wouldn't have to go. He is obssesed with germs, and contamination; the bathrooms at school were filthy anyway; but to avoid having to go into the bathroom, he conditioned himself so he wouldn't have to go. I know it's tough, but hang in there. You can vent here anytime. My heart goes out to you. Please continue to post I want to hear from you. SSacks9021@... wrote: > From: SSacks9021@... > > Dear List: I subscribe to the OcdL list as well and read the ocdspouse list > too. I need to vent and wondered where the best place would be and decided it > should be here. My desperate feelings are one of a parent so perhaps you guys > may understand. I am so frustrated. I feel I have done all I can do for my > l6 year old daughter. She continues to have little motivation and I just > don't know if its ocd or idc (I don't care). Even the teachers are unsure. > We had her put on a 504 plan and this was several weeks ago. Although it > seems as if its helping, since that time she has cut school, gone late to > classes,and now it seems as if she is developing an eating disorder. I just > don't get it anymore. She was provided with tapes for books, oral testing, > etc. > > I am at a loss as to if this is her teenage behavior or her ocd. She > will tell me all work is done but then I get progress reports that say that > homework is missing. Drs. and educators say not to punish her for failing > tests cause it will only exacerbate things. So, instead she is punished for > not telling the truth. I am exhausted mentally. > > Last week she fainted from not eating. I thought it to be an isolated > incident but today I got a call from a teacher saying she looked awful and > hadn't eaten. (She told me she had) She also says that she is not hungry. > She takes prozac. I feel like I cannot take another issue to deal with. > > She sees a therapist and is given cbt to do but usually won't do it at > home as she is supposed to. I don't know whether to see another psychiatrist, > another psychologist, a cardiologist (I forgot to mention she had a racing > heart the week before and was tested) I feel so sad and angry. Sorry for > rambling on and on but I just needed to talk. Sheree > > ------------------------------------------------------------------------ > New hobbies? New curiosities? New enthusiasms? > > Sign up for a new email list today > ------------------------------------------------------------------------ > The is sponsored by the OCSDA. You may visit their web site at http://www.ocdhelp.org/ and view schedules for chatroom support at http://www.ocdhelp.org/chat.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 I know how you feel; my 17 year old daughter has had so many ups and downs, some attributable to OCD and some to being a teenager. When I feel overwhelmed I step back, take a deep breath, and emotionally distance myself from the chaos for a few days - no correcting, no criticizing, no praising - I just give myself a break from it all, and I think my daughter gets as much from it as I do. Hang in there. Re: HELP From: SSacks9021@... Dear List: I subscribe to the OcdL list as well and read the ocdspouse list too. I need to vent and wondered where the best place would be and decided it should be here. My desperate feelings are one of a parent so perhaps you guys may understand. I am so frustrated. I feel I have done all I can do for my l6 year old daughter. She continues to have little motivation and I just don't know if its ocd or idc (I don't care). Even the teachers are unsure. We had her put on a 504 plan and this was several weeks ago. Although it seems as if its helping, since that time she has cut school, gone late to classes,and now it seems as if she is developing an eating disorder. I just don't get it anymore. She was provided with tapes for books, oral testing, etc. I am at a loss as to if this is her teenage behavior or her ocd. She will tell me all work is done but then I get progress reports that say that homework is missing. Drs. and educators say not to punish her for failing tests cause it will only exacerbate things. So, instead she is punished for not telling the truth. I am exhausted mentally. Last week she fainted from not eating. I thought it to be an isolated incident but today I got a call from a teacher saying she looked awful and hadn't eaten. (She told me she had) She also says that she is not hungry. She takes prozac. I feel like I cannot take another issue to deal with. She sees a therapist and is given cbt to do but usually won't do it at home as she is supposed to. I don't know whether to see another psychiatrist, another psychologist, a cardiologist (I forgot to mention she had a racing heart the week before and was tested) I feel so sad and angry. Sorry for rambling on and on but I just needed to talk. Sheree ------------------------------------------------------------------------ New hobbies? New curiosities? New enthusiasms? Sign up for a new email list today ------------------------------------------------------------------------ The is sponsored by the OCSDA. You may visit their web site at http://www.ocdhelp.org/ and view schedules for chatroom support at http://www.ocdhelp.org/chat.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 Hello Sheree, Your story and frustrations are all too similar. > From: SSacks9021@... > > Dear List: I subscribe to the OcdL list as well and read the ocdspouse list > too. I need to vent and wondered where the best place would be and decided it > should be here. My desperate feelings are one of a parent so perhaps you guys > may understand. I am so frustrated. I feel I have done all I can do for my > l6 year old daughter. We find ourselves giving and giving in to our children, OCD or not. Just last night things blew up because our daughter believes she must have her hair cut and bleached to satisfy her latest 'compulsion/obsession' (we don't know what to think anymore). Do we give into this latest thing because it's part of her OCD or do we treat her as a teen (14) and say she can't because she neglects her schooling! Her education is falling apart. > She continues to have little motivation and I just > don't know if its ocd or idc (I don't care). Even the teachers are unsure. > We had her put on a 504 plan and this was several weeks ago. Here it's called an IPRC and we are set to have one next month. The school is doing this on our request so she has an educational plan in place for next year. She is not in school now. When my daughter is faced with conversation about school, or her edu. choices of what will work for her she gets into a 'state'. She has a homeschool instructor come in for 2 hours, twice a week. The teacher finds our daughter to be very bright, but he finds her poor motivation puzzling. > Although it > seems as if its helping, since that time she has cut school, gone late to > classes,and now it seems as if she is developing an eating disorder. I just > don't get it anymore. She was provided with tapes for books, oral testing, > etc. There may be more stress factors affecting your daughter than she is willing to tell. Our daughter tried for years to 'contain' herself in the classroom. As she got into the higher grades she avoided school, was late all the time, couldn't concentrate, and was afraid everyone would see her accelerated OCD symptoms. She exploded. Her OCD peaked to a very severe level. Also, the eating disorder may be just part of the ups and downs of OCD. Our daughter when she stabilized at home without the school stresses she went though almost three months of barely eating. We believe it was a contamination issue but we are not sure. Now she eats. Why the sudden change, I don't know. > I am at a loss as to if this is her teenage behavior or her ocd. She > will tell me all work is done but then I get progress reports that say that > homework is missing. Drs. and educators say not to punish her for failing > tests cause it will only exacerbate things. So, instead she is punished for > not telling the truth. I am exhausted mentally. We are there too. The work she gets from the home instructor is minimal but we feel we are pestering her all the time. She rushes to do her work 5 minutes before the teacher shows up. And if it's not done? How do you punish this? Can it be the OCD or some other behavioral problem associated with OCD? ADD? > Last week she fainted from not eating. I thought it to be an isolated > incident but today I got a call from a teacher saying she looked awful and > hadn't eaten. (She told me she had) She also says that she is not hungry. > She takes prozac. I feel like I cannot take another issue to deal with. We have been trying to get our daughter back on medication for quite a while. We feel she will not be prepared to enter school in Sept. if she doesn't. She is starting to feel the stresses of this because she will soon need to pick her classes. Also our education system here has been overhauled. The changes are scary for her. But her OCD attitude kicks in and now she is starting to say things she hasn't said in a while. She asks to be killed. So again her OCD is playing havoc on our family again. > She sees a therapist and is given cbt to do but usually won't do it at > home as she is supposed to. I don't know whether to see another psychiatrist, > another psychologist, a cardiologist (I forgot to mention she had a racing > heart the week before and was tested) I feel so sad and angry. Sorry for > rambling on and on but I just needed to talk. Sheree Our daughter goes to a very good therapist twice a month. She stubbornly won't give in. She protects the OCD. No CBT and no meds. The only advice I can give (although I don't feel I'm successfully qualified in our own situation) first is to educate your daughter by giving her information on her disorder but without you teaching it. Second is to live your own life the best you can. Give first to yourself and then to everyone else you care for. My hope is that all children who live with OCD can find there way in life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 Dear List: Just want to thank everyone who replied to my letter. The outpouring of sympathy was greatly needed and appreciated. I am so disheartened right now. I feel guilty for my thoughts. I wish my child was " normal " . I believe it has to be easier to have a child with diabetes or an illness where at least you know how to help. I have tried so much and it just doesn't get better. I actually think my involvement has made things worse in a way. Its almost as if she is using it to manipulate me and the school. What I hear of in school is not what I see in the home. I see a regular teenager who talks on the phone, and is very social, and lives for the next weekend. At school, I am told, is a depressed or sickly or delinquent child (depending on the day). Sorry for my " down " letter. I do appreciate all of you parents out there and I know I am not alone. Sheree P.S. I think one of the best pieces of advice I received was to distance myself for a little bit. I'll try real hard if I can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Dear List: I know I have written alot in the past few days about my dilemmas. I wonder if anyone out there has had experience with a child with anorexia. It seems suddenly that this may be a problem my daughter is also having. At first it seemed only to be at school but now I'm not sure. The ocd was one thing and I've spent alot of time understanding it, but this seems even more hopeless to me. I always felt that although ocd was a terrible disease at least you could learn to cope with it. This anorexia things seems like it could be physically damaging and irreversible. Can anyone make me feel that this is not so? Can this be helped just like ocd? Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Dear Sheree, I am sorry to read that you think your daughter may have an eating disorder. I know that you will be mentioning this to your daughter's doctors. I read your post on the OCD-L and I am sure that the OCD-L doctors will respond soon. Please know that all of us are thinking of you and your daughter. Take care. Louis ocdnet@... /subscribe/ and /subscribe/ocdandhomeschooling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 1999 Report Share Posted March 12, 1999 Sheree, My prayers are with you. I don't know much about anorexia, and I 'm just winging it most the time with OCD. I hope you can find some answers soon. Take care, Serena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2000 Report Share Posted January 3, 2000 Me too . . I'm back. Hi Dale, Is the offer still on? No hurry, still have one month supply. Tom, I just got a case of Renewtrient, so if you need a bottle or two let me know. Also send me a private email and we might be able to help you. Dale > Help > > Hi All, > > Back from vacation and had great time, but returned home to find results > of > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2000 Report Share Posted January 3, 2000 Welcome back Dale. Concerning your PSA, I wouldn't worry too much about it yet as 1.6 is still well within the healthy range (as I understand it anything under 4 is normal) and I suspect there are a lot of random factors and natural variation in PSA test results. Even so, if I were you and being the cautious person that I am, I would not start any kind of of testosterone replacement therapy until after a second PSA test, which I would take in about 3 months along with digital rectal exam. I would want to know if my PSA was trending sharply higher. -gts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2000 Report Share Posted January 4, 2000 Dale, Total testosterone should be somewhere between 1000 and 300 ng/dl, so is the 20 ng/dl a typo!? If a testosterone delivery method is used in the future, make sure that you retest (E/T ratio) for the excess conversion (via aromatase) of testosterone into estrogen. A 69 year old friend had the testosterone level of a ninety-year old woman and used testo patches with some success. *****You should, by all means, *study* the new LEF testosterone protocol!! It includes a step-by-step approach to therapy and should serve as a guide for you and your doctor.***** Good luck, -Bill ___________________________________________________________________ >From: " Dale R. Hersh " <drh@...> >Reply-longevityegroups >longevityegroups >Subject: Help >Date: Mon, 03 Jan 2000 09:39:48 -0500 > > >Hi All, > >Back from vacation and had great time, but returned home to find results >of >blood test and I find some of it very alarming and ask for help from the > >community. > >The first item that caught my eye was my PSA level. I had a PSA test at >my last >physical on 8/5/99 and it was .6. I considered this good for a 48 year >old man >It has held around .5-.6 for the last several years. Now it shows >1.6ng/ml. >I would like some input on this. It has nearly tripled in just a few >months. >Can that be? > >Second, I was going to start testosterone replacement which prompted the >new >blood work and my Total T came back at less than 20ng/dl about one-tenth >the >normal range. Free T. 12.2; progesterone .8 and estradiol 28.6. It's >pretty >bad when Estradiol exceed T. Only other item out of normal range was >lymph >at 53 with normal range 14-46. The funny thing is I feel fairly strong, > >considering these numbers. > >I have tried to think of what I have been doing differently and can't >come up >with much to account for the rise in PSA or low t., I have been using >Renewtrient about two to three times a week and also some of the >aminos, like Glutamine, AGPL and a few others. Also have started using >Colostrum in my water during workouts. It has helped keep my energy >level up. > >As I mentioned I was going to start T replacement therapy, first using >4-diol, >and see what happens, but I am very concerned about the PSA jump and >especially >with total T. so low. > >I would greatly appreciate advice on the above. It's going to be a >while >before I can get in to see my MD, and would like to go in their >prepared, >since he is not up on a lot of this. > >Thanks in advance and hope everyone has a great new year. > >Dale R. Hersh > > >------------------------------------------------------------------------ >----------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2000 Report Share Posted January 4, 2000 Dale, Bill wrote: > *****You should, by all means, *study* the new LEF testosterone protocol!! > It includes a step-by-step approach to therapy and should serve as a guide > for you and your doctor.***** I agree with Bill. That is a very informative article. It is a shame that you don't have recourse to the advice of your doctor at a time like this. I'm happy to tell you what I think, as is Bill and Ellis, but I think all of us would have to agree that advice about a jump in PSA is really something that should be deferred to someone who has credentials (and malpractice insurance). -gts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2000 Report Share Posted January 5, 2000 Bill, Thanks and the article is what prompted me to get my levels tested. I have several copies of the article that I am now studying in detail. How many of the males out there have a history of their PSA test, before and after replacement therapy of any kind. I sure would like to know of your changes over time. I went to the LEF retail store here in Ft. Lauderdale, where I work with a very knowledgeable person ( Prater) who gave me Chrysin to take to help boost T and stop conversion to estradiols. Thanks to all for responding and I will be retested in about another month and will let you know. Dale gts wrote: Dale, Bill wrote: > *****You should, by all means, *study* the new LEF testosterone protocol!! > It includes a step-by-step approach to therapy and should serve as a guide > for you and your doctor.***** I agree with Bill. That is a very informative article. It is a shame that you don't have recourse to the advice of your doctor at a time like this. I'm happy to tell you what I think, as is Bill and Ellis, but I think all of us would have to agree that advice about a jump in PSA is really something that should be deferred to someone who has credentials (and malpractice insurance). -gts ------------------------------------------------------------------------ ----------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 , My heart goes out to you.I don't know to much about ADD ,is that what makes his behavior out of control? I would first find out why he's so angry. I'm sure and Kathy H. will be able to help you .But I want you to know I'll be praying for your family. Beth in IN. help > From: lisas@... > > i am hoping this gets posted. my son is now 14. he has ocd and add. we have been to different docs. just now found a good therapist > for the past 1yr he has been taking 40mg prozac and 5mg ritalin. i took him off > because he was always dizzy. hes been worse since then. a week ago doc says if he could control behavoir > in a week he wouldnt have to take meds again. well today is a week, and its still awful. he kicks holes in walls and grabs me. > so this mourning i said to take meds, he wont do it. how do u make him take them > his father his an hr away, and is against the meds. i have 3 yr and he has a step father. does anyone have > any support for this mother that is loosing her mind. i hope this gets posted. thanks lisa in indina > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Hi , My son is only 12 and he is very compliant about taking his medications. He knows his behavior gets out of controll sometimes and he knows his medicines really help him keep it together. Fortunately I have not been in your situation. I can tell you what I have heard some other parents say. At age 14 I don't think you can leagally make your son take his medications. (shhhh, don't tell my son!) But you can hold him accaountable for his actions. Make it clear to him that there will be strong consequences for any misbehavior. Tell him that if he kicks a hole in the wall he will pay to have it repaired. Also if his medications are making him dizzy, maybe he should try a different medication. I have heard adults wsimilar complaints about Prozac. There are other SSRIs and other Stimulant medications. I'm wondering if this is a rebellion thing for your son. My son is diagnosed Opposistional Defiant Disorder. What that means is if I need to make him do something it will usually work better if I help him think he wants to do it too. Patti in CA << i am hoping this gets posted. my son is now 14. he has ocd and add. we have been to different docs. just now found a good therapist for the past 1yr he has been taking 40mg prozac and 5mg ritalin. i took him off because he was always dizzy. hes been worse since then. a week ago doc says if he could control behavoir in a week he wouldnt have to take meds again. well today is a week, and its still awful. he kicks holes in walls and grabs me. so this mourning i said to take meds, he wont do it. how do u make him take them his father his an hr away, and is against the meds. i have 3 yr and he has a step father. does anyone have any support for this mother that is loosing her mind. i hope this gets posted. thanks lisa in indina >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 Kara, Never heard of that before. I just did it to Seth and it's weird! On his left foot the toes go down and his right foot they go up! Can you explain again what causes it and what it does to you? Is that why Seth gets his neck x-rayed for space in the vertebrae? Gail, Mom to Seth(4) jo(7) (9) (22) (24) grandma to Errick(4) and wife to (my hero) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 We all know why SOME dr. go intop the fields they go into - because basically they hate people who are not inert! Babinski - negative on my son. I thought this was a sign of neuro damage - not genetic defect like DS. One of the things we were told to watch for was a positive Babinski - IF the AAI ever becomes an issue . Think you are on the right track. aAre there no decent, compassionate, knowledgeable doc in Indiana? You and your DH will be much in demand. Sara >>> kawetzel@... - 03/15/0 10:52 PM >>> From: kawetzel@... For anyone interested in doing me a HUGE favor and advancing the medical knowledge of DS in less than 1 minute, read on. I need to find out if a " Babinski reflex " is something seen in kids with DS. It is suppossed to be there at birth, but disappear at age one unless there is some damage to the brain or spinal cord. Jen has been limping since last week and has seen many docs who give us the run around. Friday they found she had a Babinski sign, but were unsure if that was ok in DS (I don't think it is, but couldn't find anything in the literature.) I think she has what is termed AAI (too much space between the top 2 vertebra which is common in DS, usually no symptoms but CAN be fatal or can cause symptoms like 's). Here is what you do. Take your child's bare foot and hold it with one hand. Take the blunt end of a pen or even your finger and apply moderate pressure on the bottom of the foot starting at the heel and moving up to the little toe in one motion. Did the toes fan out and the big toe goe towards their head? That is the babinski sign. If the toes go toward the heel, they do not have a Babinski. I would appreciate getting a handful of answers so that I can relax or get really worried. None of the docs know. However, one neurologist told me " you know, their brains aren't right to begin with " . Thanks Mr Sensitive for that key piece of information. Thanks so much. Kara ------------------------------------------------------------------------ GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! 1/937/5/_/691668/_/953178960/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 Kara, I will help with this, but Matt is sleeping now, and we all know the 11th commandment " Thou shalt not wake a sleeping child " , so I will do it tomorrow morning and post results. Maybe that doc's mom didnt' follow this 11th commandment and therefore he " Isn't right in the brain " . He must have failed " illegible handwriting 101 " and so took " How to be an insensitive, STUPID, boob 102 " to make up for it. Good thing you will be able to make up for these kinds of comments soon. S ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 has a babinsky response, at almost 10 years old. I had never heard it wasn't normal for DS kids to have one. Loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 Kara, Did they do just one x-ray? They should do a flex, extension and neutral and they should be read by a pediatric ophthalmologist as I understand it. keep us informed Kara. This is very interesting I think. Gail, Mom to Seth(4) jo(7) (9) (22) (24) grandma to Errick(4) and wife to (my hero) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 OK Kara I tried this on . Used her right foot and got a babinski reflex! the first time. Then I tried her left foot ~ nothing. Went back to her right foot ~ nothing. Well, we all know is a wee bit odd:)) Sherry Quote Link to comment Share on other sites More sharing options...
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