Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Hi Kimi, Sorry to hear that Zach is having a hard time. In the beginning it is pretty normal to need a few extra adjustments to get the band to fit properly. I think it is very unlikely that you can put it on wrong and cause a problem. Since there is a sore you probably need to leave it off until that heals - call the ortho on monday. Ours was always good at seeing us quickly if we had any problems. What kind of band do you have? MY daughter wore a starband. You can pull it open very wide to put it on - don't worry about breaking it. It definitely takes a while to get the hang of it. When did you get the band? Hopefully he'll be in it full time very soon, but don't worry about a slow start, it is normal. -christine mom to sydney/ 14 mo/ starband grad 10-06 > > So yesterday we went to get an adjustment because Zach had a red(pink) > spot on his forehead. He was fine all day and then when he woke up his > whole forehead is red now and he has a spot where it had rubbed a > sore. This was what i was afraid of. So now i will keep the helmet off > again until we can get in to see the ortho. We already have an appt on > friday but i hope they can get us in sooner. I just feel like we arent > getting anywhere with these adjustments. I hope i am putting it on him > correctly and it isnt my fault, but it is really frustrating. Is all > this normal? I just needed to vent. I dont know anyone else with the > helmet or anyone who has used one so i dont have anyone else to talk > to. Thanks for listening. > > Kimi mom to zach > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2008 Report Share Posted April 27, 2008 Hi and welcome! Even though you would have better results (typically) with 2 capsules of ProEFA to one capsule of ProEPA- the fact that you are not seeing surges with the 3 capsules of ProEFA isn't a good sign it's going to be an answer for your child. How long has she been on the oils? (they take a day to three weeks typically to " work " ) We just had another mom post about her 5 year old child who also didn't respond to EFAs who also had a chromosome abnormality -and her son was just approved for an augmentative device or high tech AAC -that may be something you want to explore as well. AAC helps reduce frustrations and you are already exploring simple AAC with PECS. My son did have genetic testing and back then (at least in Jersey) most of us did -but most of our children did not test to have any chromosome abnormality -so what works for one type of impairment (or what caused the impairment to begin with) may be different than another. I suspect that the EFAs only work for those children in the group that's due to the unknown dramatic increase in communication impairments- which is the larger group. Apraxia used to be rare - it's no longer. Those children who probably would have had the " rare " apraxia will still be there. But as I told -back when Tanner was first diagnosed with apraxia in 1999 almost nobody had their child on fish oil anyway but even then there was success due to therapy, therapy, and make sure it's appropriate therapy. That should always be a focus -but even more so for your daughter. You say speech therapy twice a week and once private -but that doesn't sound like she's provided enough through the preschool IEP -she should probably receive at least 3 days of one on one therapy. Is it one on one? Here are some links which may help: Guideline for Speech-Language Eligibility Criteria/Matrix for Schools http://www.cherab.org/information/speechlanguage/therapymatrix.html One on One Therapy A Review of Apraxia Remediation http://www.cherab.org/information/speechlanguage/therapyintensity.html Also in many of our children oral motor therapy is needed as well- are there any signs of oral motor issues? http://www.cherab.org/information/speechlanguage/oralapraxia.html What type of speech therapy is she getting and what are the goals, are the 3, 6, or yearly goals, and who set them and is your child meeting them? I'm sure she has a neurodevelopmetal medical doctor to oversee but is he or she helping with this? What type of " soft signs " does your daughter also have if any? (hyptonia, sensory?) http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html Frustrations are so normal, that's why this group is good because most don't understand what we go through. How we count each sound, and understand that " ti ti ti ti me? " Means " can I have a tiny bit? " (to this day that makes sense to me!) It sounds like your daughter is already saying a few words and that's awesome! Is she attempting any sentences yet? You'll know because she'll probably break down and just " block " the syllables with sounds. Also your daughter is already dealing with so much and if she doesn't have to be (those with allergies or those with celiac like I was) on a special diet please don't do that to her! (I grew up on one because I had to and can tell you it's not a good thing to have to be on one with friends who eat normal) I know there are some " rah rahs " about it today from some of the parents making some believe it's something everyone should 'try' NO!!! back when we all met in person and knew each other -it didn't make a difference to those that did it but didn't need to and talk about frustration -work- expense. Apparently there is an increase in children that need to be on this diet (poor little things) but again if you don't need it -don't do it. If I were you I'd explore multisensory therapies -all of them. And...I'd make sure that my child's therapists and doctors were all knowledgeable about apraxia and had a track record on success with children like my child. Did you read The Late Talker book? There's so much in there to help the stage you and your child are at. Let us know! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2008 Report Share Posted April 27, 2008 My son is almost 5 (June 2) and he has been in speech therapy since he was 2 1/2. I was looking at old videos and he is really progressing even though he's still very hard to understand. Start making short home videos of your daughter. It will help you see the progress! My son was not a responder to fish oils. We still give them to him once a day to improve his nutritional status since he's a resistent eater. My son also only became emotional on Vitamin E. As soon as I took him off it he was fine. Speech therapy is what has truly helped my son. We can only afford to go twice a week but I work with him everyday at home. I think we all do because no one can afford therapy as much as our children need it! We have a PECS notebook from Pyramid Products.com. You can make your own too or buy pre-made images. We have been blessed by an angel to receive one of these: http://enablingdevices.com/catalog/assistive_technology_devices_used_in_educatio\ n/communication-builders/7-level-communication-builder I started with a $12 Go Talk One I bought myself: http://www.attainmentcompany.com/xcart/product.php?productid=16162 & cat=0 & page=1 You just put a picture or image in there and record a message. My son just said " I want twee! " for " I want three! " " B I N D O and Bindo was his name O! " and he used to only say " mama " , " dada " , and " nana " (but for his sister " " ) like your daughter does! Speech therapy takes a long time but it's the only thing that works for my son. I would most definately recommend you continue ST and keep it up at home too! Unfortuantely you can't take a day off (unless your dd is sick) but perseverence pays off ime. Sincerely, Debra, homeschooling mom of 4 ages 11, 10, 8, and 4 > > Hello, I have been observing this group for some time, I am the mother > of a three year old with a chromosome abnormality, she is the first one > with this certain one. I am looking for suggestions for anything that > might be helpful... we have slp twice weekly, we do ot once weekly, and > pt once weekly... i am giving her the Nortic Naturals 369... three caps > a day... and I am not seeing a huge amount of progress... she does > babble a little more... does anyone know anything else that I can > do ??? Oh... and I recently have started incorporating a gluten free > diet... any words of wisdom would be helpful... also we do baby > bumblebee and sign language videos.. she has been diagnosed with oral > motor apraxia... she has a few audible words such as mama.. nana... > banana.. and some other things she approximates are what's that, want > that, want some, but no one besides me really can understand... i have > been laminating some pictures i would like to start pecs any > suggestions????? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 PECS are a great idea. We used PECS with our son along with ASL and he has done well with both. He isn't as inclined to use the PECS anymore because I cut them all up and catagorized them in a book and he hates flipping through all the pages. He did very well when we had all the PECS for food on the fridge and the ones for self help by the bathroom and the outside stuff by the door...etc...and now they are all in a huge 3 ring binder and like I said...he is too impatient to flip trough all the pages...wish I would have kept it the same way..... Jessie [ ] FRUSTRATED Hello, I have been observing this group for some time, I am the mother of a three year old with a chromosome abnormality, she is the first one with this certain one. I am looking for suggestions for anything that might be helpful... we have slp twice weekly, we do ot once weekly, and pt once weekly... i am giving her the Nortic Naturals 369... three caps a day... and I am not seeing a huge amount of progress... she does babble a little more... does anyone know anything else that I can do ??? Oh... and I recently have started incorporating a gluten free diet... any words of wisdom would be helpful... also we do baby bumblebee and sign language videos.. she has been diagnosed with oral motor apraxia... she has a few audible words such as mama.. nana... banana.. and some other things she approximates are what's that, want that, want some, but no one besides me really can understand.. . i have been laminating some pictures i would like to start pecs any suggestions? ???? ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 A reply fro Heidi and my spastic trigger pinky, My day has gotten worse. Thank you for my one reply. You are right. I am not happy and my employer conference called me at home to state that i am near termination because of my absences. I have furnished Drs. notes, and have a standing one as well, that at any time I may be unable to get to work. From now on for any planned days off, I have to get a Drs. note before hand. I've contacted the secretary from my neurologists office to write such a note for me for my appt. in mid-June. She hates employers that do this and is planning on making it quite lengthy, and detailed, etc. I don't care anymore. This is all BS, I need my job, but there are days I can't take the pressure worrying that I can't last the whole day or my hands stop working at 3 but I need to keep going until 4:30 or 5. I am not a happy camper today at all. Stress really helps this illness, so glad my boss in an RN. Heidi To those who believe, no explanation is necessary; to those who dont, no explanation is possible In a message dated 4/30/2008 12:21:05 P.M. Eastern Daylight Time, betnden@... writes: Heidi, " and her spastic trigger pinky " , it sounds like you're going through a phase that makes the RA worse than better. Your negative feelings and questions are indicative of the beginning of 'RA Depression', an attitude that's not easy to change and does make it worse. At least that's my opinion since I went through the same thing and it did make my body worse. Knowing you could do better than that, others not seeing any change except the changes in your work habits, family that wonders why you 'suddenly' can't do relatively simple things you did before can cause more damage than the RA itself. Maybe I'm off-base, but that's the way I've experienced it. It has done better after about 3 years of pure torture, and now I'm more 'normal' to others. I hope you good luck and a painless future. Dennis in eastexas [ ] Frustrated! > Hi Group, > > I don't know where to start. I'm just feeling full of frustration. I > feel > so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend > (he's > doing wknd hours as he is leaving and wants to make sure we all get our > visits > in and our needs met, he's very special). Anyway, he noticed I was > walking > funny , told him my hips were hurting. Naturally he had to poke them. I > nearly > jumped off the table before he could do his full poke. Both hips are now > in > total, extremely painful active bursitis. I can't sit, I can't stand, I > can't sleep, I move so much I " m exhausted. I attempted work today which > was dumb, > lasted 4 hours because sitting caused the pain to go down my thighs to my > legs. Can't take the pain meds at work. On Thursday I'm scheduled to > get > shots in each hip, and probably another knuckle shot as well. I have > also > managed to get a trigger finger that snaps and sticks, which oddly I find > amusing. > It hurts but mostly feels uncomfortable. It's like a gumby finger. > Anyone > else have this experience? I've also taken my 3rd Enbrel. Very little > side > effects with number 3, so that's great, but i did manage to get a lovely > red, > swollen itchy patch at the injection site. I picked my other thigh, but > i'm > not worried about it, no biggie. Now that I'm home for a few days and > pondering things, I'm wondering how much longer can I work in a fast > paced job > where i'm up and down all day and on the computer. My hands don't look > very > RA-ish, but I feel them weakening. I can't open my gas cap on the car > anymore. > Usually someone helps but I've become very creative if I have to do it > alone > So I wonder about disability, I have a nurse thru my insurance company, > also > comes with a case manager today. we spoke about OT and PT, a possible > raised > toilet seat and a handicapped placard. Have I lost my mind? Has this > really > become my reality? My future? Sorry guys, just had to write, I " m getting > worried, and I don't know what to do if anything at all! Maybe I'm just > worrying > too much. I worry about missing work even though I have a note, and work > with nurses, they've been so good to me, and I do my job well, but > sometimes > the pressure of not letting down the team gets to me and I drag myself in > when > I have no business being there. I'm also having cognitive issues , losing > sense of direction, focus like a 3 week old kitten, fatigue right after > doing > something. I'm seeing a neurologist June 16th. I'd love to hear from > anyone > else going thru this, or who has gone thru this, etc. Sorry for writing > a > novella....and thanks for listening! > > Heidi and her spastic trigger pinky > Massachusetts > > To those who believe, no explanation is necessary; to those who dont, no > explanation is possible [Non-text portions of this message have been removed] **************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Would you believe that we are a small company and do not have the official FMLA paperwork? My Rheumatologist actually requested the form from me so he could make sure I had it on file. When I asked for it, no one had a clue what I was talking about. I've started calling future Drs. appointments and asking them to write me a note. LOL, it is my tiny way of amusing myself and giving them what they want. To my surprise, no one has complained about doing it! They are putting in that they run behind, most likely cannot return after appointment, etc. Interesting. Heidi To those who believe, no explanation is necessary; to those who dont, no explanation is possible In a message dated 4/30/2008 2:04:43 P.M. Eastern Daylight Time, kalfoley@... writes: Heidi, would it make sense for you to talk to HR and maybe take some FLMA leave until you get this flare under control? [ ] Frustrated! > Hi Group, > > I don't know where to start. I'm just feeling full of frustration. I > feel > so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend > (he's > doing wknd hours as he is leaving and wants to make sure we all get our > visits > in and our needs met, he's very special). Anyway, he noticed I was > walking > funny , told him my hips were hurting. Naturally he had to poke them. I > nearly > jumped off the table before he could do his full poke. Both hips are now > in > total, extremely painful active bursitis. I can't sit, I can't stand, I > can't sleep, I move so much I " m exhausted. I attempted work today which > was dumb, > lasted 4 hours because sitting caused the pain to go down my thighs to my > legs. Can't take the pain meds at work. On Thursday I'm scheduled to > get > shots in each hip, and probably another knuckle shot as well. I have > also > managed to get a trigger finger that snaps and sticks, which oddly I find > amusing. > It hurts but mostly feels uncomfortable. It's like a gumby finger. > Anyone > else have this experience? I've also taken my 3rd Enbrel. Very little > side > effects with number 3, so that's great, but i did manage to get a lovely > red, > swollen itchy patch at the injection site. I picked my other thigh, but > i'm > not worried about it, no biggie. Now that I'm home for a few days and > pondering things, I'm wondering how much longer can I work in a fast > paced job > where i'm up and down all day and on the computer. My hands don't look > very > RA-ish, but I feel them weakening. I can't open my gas cap on the car > anymore. > Usually someone helps but I've become very creative if I have to do it > alone > So I wonder about disability, I have a nurse thru my insurance company, > also > comes with a case manager today. we spoke about OT and PT, a possible > raised > toilet seat and a handicapped placard. Have I lost my mind? Has this > really > become my reality? My future? Sorry guys, just had to write, I " m getting > worried, and I don't know what to do if anything at all! Maybe I'm just > worrying > too much. I worry about missing work even though I have a note, and work > with nurses, they've been so good to me, and I do my job well, but > sometimes > the pressure of not letting down the team gets to me and I drag myself in > when > I have no business being there. I'm also having cognitive issues , losing > sense of direction, focus like a 3 week old kitten, fatigue right after > doing > something. I'm seeing a neurologist June 16th. I'd love to hear from > anyone > else going thru this, or who has gone thru this, etc. Sorry for writing > a > novella....and thanks for listening! > > Heidi and her spastic trigger pinky > Massachusetts > > To those who believe, no explanation is necessary; to those who dont, no > explanation is possible [Non-text portions of this message have been removed] ************ **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (_http://autos._ (http://autos./) aol.com/used? NCID=aolcmp00300 000002851) [Non-text portions of this message have been removed] __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. _http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_ (http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ) [Non-text portions of this message have been removed] **************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Heidi, " and her spastic trigger pinky " , it sounds like you're going through a phase that makes the RA worse than better. Your negative feelings and questions are indicative of the beginning of 'RA Depression', an attitude that's not easy to change and does make it worse. At least that's my opinion since I went through the same thing and it did make my body worse. Knowing you could do better than that, others not seeing any change except the changes in your work habits, family that wonders why you 'suddenly' can't do relatively simple things you did before can cause more damage than the RA itself. Maybe I'm off-base, but that's the way I've experienced it. It has done better after about 3 years of pure torture, and now I'm more 'normal' to others. I hope you good luck and a painless future. Dennis in eastexas [ ] Frustrated! > Hi Group, > > I don't know where to start. I'm just feeling full of frustration. I > feel > so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend > (he's > doing wknd hours as he is leaving and wants to make sure we all get our > visits > in and our needs met, he's very special). Anyway, he noticed I was > walking > funny , told him my hips were hurting. Naturally he had to poke them. I > nearly > jumped off the table before he could do his full poke. Both hips are now > in > total, extremely painful active bursitis. I can't sit, I can't stand, I > can't sleep, I move so much I " m exhausted. I attempted work today which > was dumb, > lasted 4 hours because sitting caused the pain to go down my thighs to my > legs. Can't take the pain meds at work. On Thursday I'm scheduled to > get > shots in each hip, and probably another knuckle shot as well. I have > also > managed to get a trigger finger that snaps and sticks, which oddly I find > amusing. > It hurts but mostly feels uncomfortable. It's like a gumby finger. > Anyone > else have this experience? I've also taken my 3rd Enbrel. Very little > side > effects with number 3, so that's great, but i did manage to get a lovely > red, > swollen itchy patch at the injection site. I picked my other thigh, but > i'm > not worried about it, no biggie. Now that I'm home for a few days and > pondering things, I'm wondering how much longer can I work in a fast > paced job > where i'm up and down all day and on the computer. My hands don't look > very > RA-ish, but I feel them weakening. I can't open my gas cap on the car > anymore. > Usually someone helps but I've become very creative if I have to do it > alone > So I wonder about disability, I have a nurse thru my insurance company, > also > comes with a case manager today. we spoke about OT and PT, a possible > raised > toilet seat and a handicapped placard. Have I lost my mind? Has this > really > become my reality? My future? Sorry guys, just had to write, I " m getting > worried, and I don't know what to do if anything at all! Maybe I'm just > worrying > too much. I worry about missing work even though I have a note, and work > with nurses, they've been so good to me, and I do my job well, but > sometimes > the pressure of not letting down the team gets to me and I drag myself in > when > I have no business being there. I'm also having cognitive issues , losing > sense of direction, focus like a 3 week old kitten, fatigue right after > doing > something. I'm seeing a neurologist June 16th. I'd love to hear from > anyone > else going thru this, or who has gone thru this, etc. Sorry for writing > a > novella....and thanks for listening! > > Heidi and her spastic trigger pinky > Massachusetts > > To those who believe, no explanation is necessary; to those who dont, no > explanation is possible Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Heidi, would it make sense for you to talk to HR and maybe take some FLMA leave until you get this flare under control? [ ] Frustrated! > Hi Group, > > I don't know where to start. I'm just feeling full of frustration. I > feel > so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend > (he's > doing wknd hours as he is leaving and wants to make sure we all get our > visits > in and our needs met, he's very special). Anyway, he noticed I was > walking > funny , told him my hips were hurting. Naturally he had to poke them. I > nearly > jumped off the table before he could do his full poke. Both hips are now > in > total, extremely painful active bursitis. I can't sit, I can't stand, I > can't sleep, I move so much I " m exhausted. I attempted work today which > was dumb, > lasted 4 hours because sitting caused the pain to go down my thighs to my > legs. Can't take the pain meds at work. On Thursday I'm scheduled to > get > shots in each hip, and probably another knuckle shot as well. I have > also > managed to get a trigger finger that snaps and sticks, which oddly I find > amusing. > It hurts but mostly feels uncomfortable. It's like a gumby finger. > Anyone > else have this experience? I've also taken my 3rd Enbrel. Very little > side > effects with number 3, so that's great, but i did manage to get a lovely > red, > swollen itchy patch at the injection site. I picked my other thigh, but > i'm > not worried about it, no biggie. Now that I'm home for a few days and > pondering things, I'm wondering how much longer can I work in a fast > paced job > where i'm up and down all day and on the computer. My hands don't look > very > RA-ish, but I feel them weakening. I can't open my gas cap on the car > anymore. > Usually someone helps but I've become very creative if I have to do it > alone > So I wonder about disability, I have a nurse thru my insurance company, > also > comes with a case manager today. we spoke about OT and PT, a possible > raised > toilet seat and a handicapped placard. Have I lost my mind? Has this > really > become my reality? My future? Sorry guys, just had to write, I " m getting > worried, and I don't know what to do if anything at all! Maybe I'm just > worrying > too much. I worry about missing work even though I have a note, and work > with nurses, they've been so good to me, and I do my job well, but > sometimes > the pressure of not letting down the team gets to me and I drag myself in > when > I have no business being there. I'm also having cognitive issues , losing > sense of direction, focus like a 3 week old kitten, fatigue right after > doing > something. I'm seeing a neurologist June 16th. I'd love to hear from > anyone > else going thru this, or who has gone thru this, etc. Sorry for writing > a > novella....and thanks for listening! > > Heidi and her spastic trigger pinky > Massachusetts > > To those who believe, no explanation is necessary; to those who dont, no > explanation is possible Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 At least now you have some protection in your job. When I started suffering from this 'blessing', I was told that I could have anything I needed to do my job, middle-management, including a private secretary, dictaphone, etc. When it became difficult to climb the steps to the usual entrance, I parked near the ramp at the main entrance. I was forced to park 'with the rest' and then moved to an office at the other end of the hallway instead of directly across from my people. Then, I was laid off since I wouldn't travel to Norway even after my doc wrote a letter advising no travel until the RA's under control. Then they refused to admit I even had a disability and there's nothing in my records about it. At least the ADA is starting to put more teeth in the laws to help us. Good luck, Dennis in eastexas On Wed, Apr 30, 2008 at 1:09 PM, <sposy@...> wrote: > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 hi there, thank you! I have sent you my fax number privately. Heidi To those who believe, no explanation is necessary; to those who dont, no explanation is possible In a message dated 5/1/2008 8:37:16 A.M. Eastern Daylight Time, buslady1995@... writes: I can get you the paperwork if you have a fax #, I can fax it to you. The paperwork is the same all over. The Doctor will fill out the main portion of it, your work CANNOT refuse it as it is a Federal law. Let me know, _sposy@..._ (mailto:sposy@...) wrote: Would you believe that we are a small company and do not have the official FMLA paperwork? My Rheumatologist actually requested the form from me so he could make sure I had it on file. When I asked for it, no one had a clue what I was talking about. I've started calling future Drs. appointments and asking them to write me a note. LOL, it is my tiny way of amusing myself and giving them what they want. To my surprise, no one has complained about doing it! They are putting in that they run behind, most likely cannot return after appointment, etc. Interesting. Heidi To those who believe, no explanation is necessary; to those who dont, no explanation is possible In a message dated 4/30/2008 2:04:43 P.M. Eastern Daylight Time, _kalfoley@..._ (mailto:kalfoley@...) writes: Heidi, would it make sense for you to talk to HR and maybe take some FLMA leave until you get this flare under control? ----- Original Message ---- From: " __sposy@..._ (mailto:_sposy@...) _ (mailto:_sposy@..._ (mailto:sposy@...) ) " <__sposy@..._ (mailto:_sposy@...) _ (mailto:_sposy@..._ (mailto:sposy@...) ) > _ @_RA-SUP_RA-SUPPOR_ @groRA-SUPP_ (mailto: ) ) Sent: Wednesday, April 30, 2008 12:53:56 PM Subject: Re: [ ] Frustrated A reply fro Heidi and my spastic trigger pinky, My day has gotten worse. Thank you for my one reply. You are right. I am not happy and my employer conference called me at home to state that i am near termination because of my absences. I have furnished Drs. notes, and have a standing one as well, that at any time I may be unable to get to work. From now on for any planned days off, I have to get a Drs. note before hand. I've contacted the secretary from my neurologists office to write such a note for me for my appt. in mid-June. She hates employers that do this and is planning on making it quite lengthy, and detailed, etc. I don't care anymore. This is all BS, I need my job, but there are days I can't take the pressure worrying that I can't last the whole day or my hands stop working at 3 but I need to keep going until 4:30 or 5. I am not a happy camper today at all. Stress really helps this illness, so glad my boss in an RN. Heidi To those who believe, no explanation is necessary; to those who dont, no explanation is possible In a message dated 4/30/2008 12:21:05 P.M. Eastern Daylight Time, betndengmail (DOT) com writes: Heidi, " and her spastic trigger pinky " , it sounds like you're going through a phase that makes the RA worse than better. Your negative feelings and questions are indicative of the beginning of 'RA Depression', an attitude that's not easy to change and does make it worse. At least that's my opinion since I went through the same thing and it did make my body worse. Knowing you could do better than that, others not seeing any change except the changes in your work habits, family that wonders why you 'suddenly' can't do relatively simple things you did before can cause more damage than the RA itself. Maybe I'm off-base, but that's the way I've experienced it. It has done better after about 3 years of pure torture, and now I'm more 'normal' to others. I hope you good luck and a painless future. Dennis in eastexas ----- Original Message ----- From: <___sposyaol (DOT) __s_ (mailto:__sposy@...) _ (mailto:__sposy@..._ (mailto:_sposy@...) ) _ (mailto:__sposy@..._ (mailto:_sposy@...) _ (mailto:_sposy@..._ (mailto:sposy@...) ) ) > <_ @ groRA- SUPP_ (mailto: @_ @ > Sent: Tuesday, April 29, 2008 10:15 PM Subject: [ ] Frustrated! > Hi Group, > > I don't know where to start. I'm just feeling full of frustration. I > feel > so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend > (he's > doing wknd hours as he is leaving and wants to make sure we all get our > visits > in and our needs met, he's very special). Anyway, he noticed I was > walking > funny , told him my hips were hurting. Naturally he had to poke them. I > nearly > jumped off the table before he could do his full poke. Both hips are now > in > total, extremely painful active bursitis. I can't sit, I can't stand, I > can't sleep, I move so much I " m exhausted. I attempted work today which > was dumb, > lasted 4 hours because sitting caused the pain to go down my thighs to my > legs. Can't take the pain meds at work. On Thursday I'm scheduled to > get > shots in each hip, and probably another knuckle shot as well. I have > also > managed to get a trigger finger that snaps and sticks, which oddly I find > amusing. > It hurts but mostly feels uncomfortable. It's like a gumby finger. > Anyone > else have this experience? I've also taken my 3rd Enbrel. Very little > side > effects with number 3, so that's great, but i did manage to get a lovely > red, > swollen itchy patch at the injection site. I picked my other thigh, but > i'm > not worried about it, no biggie. Now that I'm home for a few days and > pondering things, I'm wondering how much longer can I work in a fast > paced job > where i'm up and down all day and on the computer. My hands don't look > very > RA-ish, but I feel them weakening. I can't open my gas cap on the car > anymore. > Usually someone helps but I've become very creative if I have to do it > alone > So I wonder about disability, I have a nurse thru my insurance company, > also > comes with a case manager today. we spoke about OT and PT, a possible > raised > toilet seat and a handicapped placard. Have I lost my mind? Has this > really > become my reality? My future? Sorry guys, just had to write, I " m getting > worried, and I don't know what to do if anything at all! Maybe I'm just > worrying > too much. I worry about missing work even though I have a note, and work > with nurses, they've been so good to me, and I do my job well, but > sometimes > the pressure of not letting down the team gets to me and I drag myself in > when > I have no business being there. I'm also having cognitive issues , losing > sense of direction, focus like a 3 week old kitten, fatigue right after > doing > something. I'm seeing a neurologist June 16th. I'd love to hear from > anyone > else going thru this, or who has gone thru this, etc. Sorry for writing > a > novella....and thanks for listening! > > Heidi and her spastic trigger pinky > Massachusetts > > To those who believe, no explanation is necessary; to those who dont, no > explanation is possible [Non-text portions of this message have been removed] ************ **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (__http://autos.h_'>http://autos.h_ (http://autos._/) (_http://autos.h_'>http://autos.h_ (http://autos./) ) aol.com/used? NCID=aolcmp00300 000002851) [Non-text portions of this message have been removed] __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. __http://mobile.http://mobile.http://mo_ (http://mobile.http//mobhttp://mobile.) <_Whttp://mobile._ (whttp://mobile./) <Wht_ (_http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_ (http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ) ) [Non-text portions of this message have been removed] ************************<WBR>**Need a new ride? Check out the largest site f listings at AOL Autos. (_http://autos.http://autos.http://autos.<WBhttp://au_ (http://autos.aol.com/used?NCID=aolcmp00300000002851) ) [Non-text portions of this message have been removed] --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. [Non-text portions of this message have been removed] **************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 I can get you the paperwork if you have a fax #, I can fax it to you. The paperwork is the same all over. The Doctor will fill out the main portion of it, your work CANNOT refuse it as it is a Federal law. Let me know, sposy@... wrote: Would you believe that we are a small company and do not have the official FMLA paperwork? My Rheumatologist actually requested the form from me so he could make sure I had it on file. When I asked for it, no one had a clue what I was talking about. I've started calling future Drs. appointments and asking them to write me a note. LOL, it is my tiny way of amusing myself and giving them what they want. To my surprise, no one has complained about doing it! They are putting in that they run behind, most likely cannot return after appointment, etc. Interesting. Heidi To those who believe, no explanation is necessary; to those who dont, no explanation is possible In a message dated 4/30/2008 2:04:43 P.M. Eastern Daylight Time, kalfoley@... writes: Heidi, would it make sense for you to talk to HR and maybe take some FLMA leave until you get this flare under control? [ ] Frustrated! > Hi Group, > > I don't know where to start. I'm just feeling full of frustration. I > feel > so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend > (he's > doing wknd hours as he is leaving and wants to make sure we all get our > visits > in and our needs met, he's very special). Anyway, he noticed I was > walking > funny , told him my hips were hurting. Naturally he had to poke them. I > nearly > jumped off the table before he could do his full poke. Both hips are now > in > total, extremely painful active bursitis. I can't sit, I can't stand, I > can't sleep, I move so much I " m exhausted. I attempted work today which > was dumb, > lasted 4 hours because sitting caused the pain to go down my thighs to my > legs. Can't take the pain meds at work. On Thursday I'm scheduled to > get > shots in each hip, and probably another knuckle shot as well. I have > also > managed to get a trigger finger that snaps and sticks, which oddly I find > amusing. > It hurts but mostly feels uncomfortable. It's like a gumby finger. > Anyone > else have this experience? I've also taken my 3rd Enbrel. Very little > side > effects with number 3, so that's great, but i did manage to get a lovely > red, > swollen itchy patch at the injection site. I picked my other thigh, but > i'm > not worried about it, no biggie. Now that I'm home for a few days and > pondering things, I'm wondering how much longer can I work in a fast > paced job > where i'm up and down all day and on the computer. My hands don't look > very > RA-ish, but I feel them weakening. I can't open my gas cap on the car > anymore. > Usually someone helps but I've become very creative if I have to do it > alone > So I wonder about disability, I have a nurse thru my insurance company, > also > comes with a case manager today. we spoke about OT and PT, a possible > raised > toilet seat and a handicapped placard. Have I lost my mind? Has this > really > become my reality? My future? Sorry guys, just had to write, I " m getting > worried, and I don't know what to do if anything at all! Maybe I'm just > worrying > too much. I worry about missing work even though I have a note, and work > with nurses, they've been so good to me, and I do my job well, but > sometimes > the pressure of not letting down the team gets to me and I drag myself in > when > I have no business being there. I'm also having cognitive issues , losing > sense of direction, focus like a 3 week old kitten, fatigue right after > doing > something. I'm seeing a neurologist June 16th. I'd love to hear from > anyone > else going thru this, or who has gone thru this, etc. Sorry for writing > a > novella....and thanks for listening! > > Heidi and her spastic trigger pinky > Massachusetts > > To those who believe, no explanation is necessary; to those who dont, no > explanation is possible Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Honestly? This sort of Dr scares me! From his questions it sounds as though he was fishing for a snake under a rock or something. It just doesn't sound right the way he was asking you those questions and his replies etc. Personally-- I would not rush in and get her in ASAP, but make an appt and if you have questions yourself, take her somewhere to get those answers. But I don't see the need to really worry about it or rush etc. About the speech therapist. It DOES sound as though she was being stubborn with that therapist, but honestly-- at this age-- who can BLAME her for acting that way if the therapist told her that she couldnt' play? I'd react the same way and I'm not 4! LOL I think that it might be a wise idea to try and find a different ST to work with her-- because what good is it to have someone that cannot encourage her to speak in the session? Find someone who can do a play-based approach that is led by your daughter rather than the therapist herself. If she feels she has some of the control, she'll feel more comfortable and she'll start talking. hope this helps?? Becky In a message dated 6/6/2008 12:55:46 A.M. Eastern Daylight Time, joanwetterhahn@... writes: I told the doctor this and he said I was in denial and he hopes I bring her in as soon as possible. Should I???? **************Get trade secrets for amazing burgers. Watch " Cooking with Tyler Florence " on AOL Food. (http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Joan, to me it doesn't sound based on these answers that your daughter is autistic. Also the selective speech and stubborness are not an autistic characteristics. My daughter is like that too. Can't stand criticism and locks up refuses to interact with the therapist if she is criticized or if she does not like the toys selected as prompts and she also need sto be in control of the games/toys. So this is pretty typical for a child who has problems speaking as it is their means to gain some control. I am no doctor but I do have A 3.8 apraxic child --severely apraxic and she too has been considered autistic by some very superficial standards by an SLP no less, and others who kept turning everything around just like it seems they did in your case. Once they get that autism lens on, it's hard for them to see anything else and everything is seen through autism perspective. Find the criteria for autism on-line and fill out the parental questionnaire and if you think your child has some of the social/emotional problems on top of the speech issues further investigation is warranted. Bu either way, I would not go to this particular doctor just because his conclusions seem to be based on very superficial evidence and he's more likely to misinterpret everything if he has already decided she is autistic. Speech children with neurological issues such as apraxia can have autistic like sensory issues and social/behavioral difficulties due to the fact that it is after all a neurological problem and also to their inability to express themselves. It's got to be very frustrating!!! But a good doctor who really understands both autism and speech problems and has seen enough of both, knows the difference. Good luck! Elena --mom to Ziana --age 3.8 --severely apraxic but making great progress with appropriate therapy and diet/supplements joanwetterhahn <joanwetterhahn@...> wrote: I have a girl who will be 4 on sunday, she only speakes when she wants to. I just changed her speach therapy to another clinic and it seems to be going good,yesterday she was not talking to the new therapist until she was told no playing until you talk. She shut down for about 10 minutes, then decided to talk, she named pictures for the lady. It was a fight to get her to talk. When she was leaving seen the gym and told the therapist I want to play there. She spoke very clearly, the therapist thinks she is just stubborn and will talk when she wants. Later in the day had to go to the development ped. She jumped a little when he put the cold stethascope on her back, she also giggled when he listened to her chest. She is very tickelish. He told me these were sensory issues. He also asked if she looked both ways before crossing the street, I said not always. He said this showed she was not aware of danger. He also asked if she put her toys away when asked, I of course said not always. He said this showed she doesen't follow instructions. He asked if she was scared of people of different colors or races. I sais no she loves all people and always says hi to everyone, and she sometimes wants to hug other kids she does not know. he said that was a very bad sign and he is sure she is autistic. He wants her to see a psyc. doctor for further tests. Is being tickelish and friendly autism if so I hope she stays that way. I don't her to be afraid of people just because they look different. I told the doctor this and he said I was in denial and he hopes I bring her in as soon as possible. Should I???? ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Sorry it took me so long to reply. says very little besides mommy daddy dede mikey meany Hi bye. She used to say moon, bird, sun, flag,milk, juice and a few others. Last year a speech thearpist told me she was fine and just didn't want to talk. She told me to make her say milk or juice every time she wanted a drink. shut down when I tried and would only say Daddy and Meanie. It took me 3 months to get her to say mommy again. then she would say full sentances when she didn't have time to think about it. Like I asked her what she was doing upstairs in her brothers room and she yelled back I'm just playing with Precious (the dog). She also talks to the neighbor lady when visiting with the kids. The lady says hi and she says back when asked how she is says fine. If asked if she wants a drink she says Milk Please. and she says thank you when she gets it. at home she says very little. she uses noises and points to things she wants. She understands what we tell her to do, and seems to be very bright other than not talking.She is hardly ever sick, usally just what her brother brings home from school.She is very friendly to everyone and doesen't seem to mind she cant talk to them. She says Hi to everyone. She is not shy at all. She has no allergies that I know about. She does everything a 4 year old does except talk. She is potty trained, She would not go for me so I put her back in diapers. A week later she went in her room, took off her diaper put on underwear and has only had one accident in over a year. When she got color crayons and coloring book she had us color a picture each then I told her it was her turn, she colored one herself and never went out of the lines. She doesen't always get the colors right but she stays in the lines. She plays with blocks and cars but is not obsessive about lining them up but usally puts colors together. I know this is long so i'm sorry but I need to find someone who listens the doctors and schools just seem to want to label her and I just want to help her label or not. Thank You for listening. I almost forgot I live in Minnesota, Where more kids are diagnosed with autism than any other state. Funny ha. > > Joan when you say your daughter speaks when she wants to -is there > one situation she will always talk in? From what you wrote here it > would be hard for anyone to know the reason your child doesn't always > speak -is she shy? Has anyone mentioned selective mutism? Selective > mutism isn't a speech impairment (and you say your daughter can speak > clearly when she wants) Selective mutism is a psychological one and > there is help for that if that's what it is. > http://www.selectivemutismfoundation.org/sound.shtml > http://www.asha.org/about/publications/leader- online/archives/2002/q3/020924ftr.htm > > As far as the developmental pediatrician you saw -huh? You need to > take your child to a knowledgeable neurodevelopmental medical doctor > and if I were you and it was really that bad I'd report the one you > just saw. What did you say/do when this doctor said what he did?! > Laugh? For SURE don't go back to him! Run don't walk away!! > > The questions for real don't even make sense. I mean why would a > doctor ask if a 4YO is " scared of people of different colors or races " > Trick question anyway if he came up with a diagnosis for however you > answered. If you said " no " as you did she's autistic and I guess if > you said " yes " she's a paranoid racist? > > Why would he say he's " sure " she's autistic? > > A good pediatric neurologist or developmental pediatrician could have > addressed your daughter's selective mutism (if that's what it is) as > well. > http://www.emedicine.com/PED/topic2660.htm > > What state/country are you in others can provide recommendations. > (for a good pediatric neurologist or developmental pediatrician) > > ===== > Quote Link to comment Share on other sites More sharing options...
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