Guest guest Posted December 17, 2001 Report Share Posted December 17, 2001 Thank you for that beautiful poem and you know what, I printed it and I am bringing it to work tomorrow putting it in my office on my board and also attaching it to my office here at home and the small office in my car! Thank you.....I needed that, and it made me smile. You are too sweet. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2001 Report Share Posted December 17, 2001 Thank you for that beautiful poem and you know what, I printed it and I am bringing it to work tomorrow putting it in my office on my board and also attaching it to my office here at home and the small office in my car! Thank you.....I needed that, and it made me smile. You are too sweet. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2001 Report Share Posted December 17, 2001 Thank you for that beautiful poem and you know what, I printed it and I am bringing it to work tomorrow putting it in my office on my board and also attaching it to my office here at home and the small office in my car! Thank you.....I needed that, and it made me smile. You are too sweet. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 Dear Caroline, I don't remember you saying, but I didn't know if you were possibly considering hysterectomy....if so, please email in private...............I wouldn't try to turn you off, but I have a lot to tell you and would really like to write a book someday. Just in case, I wanted to tell you some things about it and why I feel that it is the wrong alternative, but would never push my thoughts are advice on you. If you want to email me, you can do so at cjlabbe01@... thanks. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Caroline, it sounds like you have a great Rheumy who really listens and understands you. I think that's great. Keep us updated on how you feel! Love, sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Caroline, it sounds like you have a great Rheumy who really listens and understands you. I think that's great. Keep us updated on how you feel! Love, sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Caroline, it sounds like you have a great Rheumy who really listens and understands you. I think that's great. Keep us updated on how you feel! Love, sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Dear Caroline, as always your thoughts and well wishes are very kind and always make me smile. Thank you for the support as always. It means the world to me. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Dearest Caroline, So sorry to hear that you are in so much pain and that your fevers have been so constant, that must be terrible for you to have them every day. I hope that soon, with the right combo of meds you will feel more like the person you use to be. I'm so happy to hear that you were approved for disability long term and can keep the house as that is two stresses less in your life....whew! I hope in the end that everything works out for you and of course a special prayer will be said for you. Please take care, Marilyn mhogg69@... wrote: I have been reading all the emails from everyone and realized it is time for an update on me. I have had fevers over 100 every day since Thanksgiving 2000, even though it took until October 2001 to get diagnosed. I now use 15 prescribed medications which include the NSAID Relefin 1500 mg per day, Prednisone 10 mg per day, and DMARD Methotrexate. I have been on the MTX for 6 weeks.It has been a tremendous help with the pain. Fatigue still is a major factor. My temps are all over the place. For a couple of weeks, they were lower, then up and down weekly. I had no nausea from the MTX but the effects only lasted 3-4 days at first, and the past 10 days my temp is almost always 102 degrees. Still not a lot of pain, or should I say pain in lots of areas still, but very tolerable. My rheumy said he could not up the MTX because I am having episodes with my heart and blood pressure.......... --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Dearest Caroline, So sorry to hear that you are in so much pain and that your fevers have been so constant, that must be terrible for you to have them every day. I hope that soon, with the right combo of meds you will feel more like the person you use to be. I'm so happy to hear that you were approved for disability long term and can keep the house as that is two stresses less in your life....whew! I hope in the end that everything works out for you and of course a special prayer will be said for you. Please take care, Marilyn mhogg69@... wrote: I have been reading all the emails from everyone and realized it is time for an update on me. I have had fevers over 100 every day since Thanksgiving 2000, even though it took until October 2001 to get diagnosed. I now use 15 prescribed medications which include the NSAID Relefin 1500 mg per day, Prednisone 10 mg per day, and DMARD Methotrexate. I have been on the MTX for 6 weeks.It has been a tremendous help with the pain. Fatigue still is a major factor. My temps are all over the place. For a couple of weeks, they were lower, then up and down weekly. I had no nausea from the MTX but the effects only lasted 3-4 days at first, and the past 10 days my temp is almost always 102 degrees. Still not a lot of pain, or should I say pain in lots of areas still, but very tolerable. My rheumy said he could not up the MTX because I am having episodes with my heart and blood pressure.......... --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Hi Vicky not too bad at the mo (hate saying that as we usually start the downhill slide soon after!). The SCD diet and the bowel meds help hugely. Its been a busy old year. Initially very busy with Treating Autism the first half of the year, lots of travelling about and was getting a bit done in. I stepped down in July and decided to do some biomed on me as I had been exhausted (arent we all) for a while, terrible sleep etc but hadnt really relaised how bad I felt til I started to feel better. My test results were a bit dire and now feeling hepas better with some supps and better diet. - we decided to begin RDI after the summer and also switched to a special school. She had been finding mainstream harder as she got older and we started looking at our options and just thought we would take the plunge before she was even due to go to High School. Its been a very slow intro but she likes it. Its small with only 40 something kids in the whole school, thats nursery, juniors and seniors. She swims twice a week there and loves all the music stuff like Kodaly. We found out in October that my mum had mouth cancer so she had a big op for that in November removing part of her tongue and the glands in her neck (bad luck for her, never smoked in her life). She is amazing and is very well which we hadnt expected just 6 weeks after. That has kept me busy up and down to Glasgow so much. However we are all so grateful that theres no spread and she is doing brill, speech, eating etc really good for where she is now. We have all had the usual flu, tummy upsets going on for quite a few weeks so like everyone else gotta get back into a healthier regime again in the New Year. But all good here and hoping to get back to doing a few bits for TA in the New Yaer and cranking up the RDI which has been kinda coasting along slowly. Are you going to the TA Conference in March will be good to catch up. I havent been doing yahoo groups much at all but trying to get up to speed a bit now as I do miss you all hugely and gigantically. Now truly over and out as am supposed to be out shopping it 5 minutes and still in my nighty argghhhh. Luv caz xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Caroline, yes please!!! have been looking on the internet for signing books and DVD's how can they justify these prices? He is doing signalong which is a combination of BSL and Makaton, but we are desperate for resources. Look at that March, I haven't been keeping up myself, too much going on these last few months, less chance of snow this time then. Alcohol- the saying is one is too many and 20 is not enough. I find drinking lager rather than shorts is better because too many trips to the toilet and a tendency to fall asleep is kind of limiting lol. The thing is,like smoking or over eating we live quite different lifes to most other people and anything that works as a stress buster is harder for us to give up imho. loves his school, but perhaps too much, my concern now is that it would make the best respite centre in the UK, so caring and great fun but we now need to get down to some serious work. I have had Viral issues suggested before and strangely fits into so many categories, he even has the bullseye rash of Lyme every Summer, but he descended into autism and gut hell after a year+ of very strong antibiotics when he was still in his baby buggy at around 16 months old. Did you ever read the story of the boy it was claimed had Candida induced autism and was recovered after a good few years of gut treatment? I will try and dig it out, have it buried here somewhere. was like when he was in pain, he didn't want to attend to anything other than trying to space out of it all, who can blame them, imagine if we were expected to do anything whilst in severe pain, does she have Reflux? I can picture the Wii Fii thing, we don't have one, but tell Harry the latest advice is to warm up first lol. Vicky xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Oooh yes please, BBrowne, he is 11 but still watches things like fun song factory and such like, his play skills are still very much that of a way younger child. He loves to watch signing hence the interest in fun song factory, and one of his favourites is Dave Benson makaton song video, it's like they are talking his language, he feels involved. Amazing a child could be in the education system since 4 yrs old, statemented at 3 and no one picks up on this, eh? Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 So pleased you are feeling better Caroline, easiest thing in the world to neglect our own health. Good news about the school for , feeling comfortable is half the battle for our kids, do they cater for her diet? Sorry to hear about your mum, really bad luck as a non smoker, but hopefully she is over the worst. My mum is in Glasgow now and still no visit from me, been 2 years, she seems to be a bit foggy in the brain but follows doctor advice for flu vaccine every winter, sigh. I am expecting to be more financially fluid in the New Year so will settle my money issues and definitely get my ticket for Bournemouth and pay my TA subs lol. It will be nice not to see the postie as Freddie Kruger and start the next thing for , K protocol. tells me he has no more voices in his head, either Inositol is brilliant or reaching almost 14 means not telling parents everything, I so hope it's the Inositol. Looking forward to seeing everyone again in Feb Vicky > > Hi Vicky > not too bad at the mo (hate saying that as we usually start > the downhill slide soon after!). The SCD diet and the bowel meds help > hugely. Its been a busy old year. Initially very busy with Treating > Autism the first half of the year, lots of travelling about and was > getting a bit done in. I stepped down in July and decided to do some > biomed on me as I had been exhausted (arent we all) for a while, > terrible sleep etc but hadnt really relaised how bad I felt til I > started to feel better. My test results were a bit dire and now > feeling hepas better with some supps and better diet. > - we decided to begin RDI after the summer and also switched > to a special school. She had been finding mainstream harder > as she got older and we started looking at our options and just > thought we would take the plunge before she was even due to go to > High School. Its been a very slow intro but she likes it. Its small > with only 40 something kids in the whole school, thats nursery, > juniors and seniors. She swims twice a week there and loves all the > music stuff like Kodaly. > We found out in October that my mum had mouth cancer so she had a big > op for that in November removing part of her tongue and the glands in > her neck (bad luck for her, never smoked in her life). She is amazing > and is very well which we hadnt expected just 6 weeks after. That has > kept me busy up and down to Glasgow so much. However we are all so > grateful that theres no spread and she is doing brill, speech, eating > etc really good for where she is now. > We have all had the usual flu, tummy upsets going on for quite a few > weeks so like everyone else gotta get back into a healthier regime > again in the New Year. But all good here and hoping to get back to > doing a few bits for TA in the New Yaer and cranking up the RDI which > has been kinda coasting along slowly. > Are you going to the TA Conference in March will be good to catch up. > I havent been doing yahoo groups much at all but trying to get up to > speed a bit now as I do miss you all hugely and gigantically. > Now truly over and out as am supposed to be out shopping it 5 minutes > and still in my nighty argghhhh. > Luv caz > xx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Hi Honey Thats brill about ! In fact its totally blooming amzing! You know we recently started using GABA again which has inositol in it and doing amazingly well on it. Another mum told me to try again and its deffo the inositol cos the plain gaba was rubbish for her. So glad you are going to be financially better off, its amazing how much we shell out on these kids. Glad you are coming to Bournemouth, it will be brill I musty get jiggy with flights and accomodation I always leave everything to the last minute and end up paying a fortune for flights. It will be brill am looking forward to Natasha C-McB being a bit of an SCD fan. I think its KEY for the bad gut kids cos when was on the pentasa alone it wasnt as effective as pentasa and SCD. I had me on it and I felt brilliant but am not very good at staying on the staright and narrow with anythin g really! Doing biomed on me sure made me appreciate what our kids go thru in detox, hells bells. Coming off diet coke was something to behold.... Exciting biting, what you doing for New Year? We are having a quite time cos we are still recovering from ghastly (proper) flu. Its been yucky so just having nice food and if you are around will raise a glass of water with you at midnight!! Luv caz xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Caroline, Gabba alone was dreadful for , we stopped it with a great big tub of unused powder, back to money again lol. He is not as brilliant as on the Inositol but I had a light bulb moment just the other day on this OCD stuff and realised that since he started his new school he has become more driven by routines and schedules, he was never like that before so I'm wondering if their strict scheduling is responsible for this more than anything else. I was thinking of posting the question here because used to love spontaneity and change but his school have read the book on typical autism and decided he would prefer routine, I disagree. Very low carb to near SCD has been amazing for 's gut problems far more than GF/CF ever was but did you read the article about carbs and memory? I have increased slightly on carbs and also increased what enzymes I have left and found this to be good also, mind you that is after a long time on low/zero carb diet. He is remembering and using his signs, big leap forward for him, so much so we now need to learn some more, he is actually making signs and I'm thinking " What was that again " ? I am so looking forward to Feb and increasing alcohol intake, don't think I had my fill last time, psssss, haven't really got down to it but hopefully somewhere cheaper than the Royal Exeter this time, after all it's only a bed I want. Will be a quiet night tonight for us also, haven't got the nerves to give up alcohol altogether, well done you, still on the ciggies also, I do need my crutches. Happy Hogmany Vicky xx In Autism-Biomedical-Europe , " carolinetraa2000 " wrote: > > Hi Honey > > Thats brill about ! In fact its totally blooming amzing! You > know we recently started using GABA again which has inositol in it > and doing amazingly well on it. Another mum told me to try > again and its deffo the inositol cos the plain gaba was rubbish for > her. > > So glad you are going to be financially better off, its amazing how > much we shell out on these kids. Glad you are coming to Bournemouth, > it will be brill I musty get jiggy with flights and accomodation I > always leave everything to the last minute and end up paying a > fortune for flights. > > It will be brill am looking forward to Natasha C-McB being a bit of > an SCD fan. I think its KEY for the bad gut kids cos when was > on the pentasa alone it wasnt as effective as pentasa and SCD. I had > me on it and I felt brilliant but am not very good at staying on the > staright and narrow with anythin g really! Doing biomed on me sure > made me appreciate what our kids go thru in detox, hells bells. > Coming off diet coke was something to behold.... > > Exciting biting, what you doing for New Year? We are having a quite > time cos we are still recovering from ghastly (proper) flu. Its been > yucky so just having nice food and if you are around will raise a > glass of water with you at midnight!! > > Luv caz > xx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Hi Vicky I didnt see the article on memory and carbs? Was it on here, I havent been around much for yonks so not too up to speed with that. Conference is March BTW so dont you be going in Feb or we will miss each other. Hahaha, I'm too funny!! Alcohol - I am always stopping and starting but really want to try off the vino collapso for a while. Its not been an issue for a few weeks cos had quite strong antibiotics and so didnt feel like drinking. for me I always find I can happily not drink if I just dont at all, does that make sense. Like all true Scots it must be the impossibility of having only one! Moderation is not a word bandied around much in downtown Glasgow! Thats so great about and the signing. I think I used to have a makaton video if you want to have it, or maybe I borrowed it from someone. Mandi, perhaps? Does he use Makaton or BSL? Is doing OK at his new school? likes being at home and I think she feels that school just disrupts things for her, its also so dependent on how she feels which I imagine is pretty rubbish a lot of the time! Yesterday I heard this thudding in the living room and when I went thru Harry was teaching her how to jog on the Wii Fit. It was so funny, she was so loving it. We get that kinda funny smell sometimes too. I used to think it was yeast, bacteria, ammonia... Have you ever looked at viral issues? So many people have said to me Becks is a viral kid, sigh... something to explore in the New Year. Have a nice evening when it comes around. Luv Caroline xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Caroline, Since being on Armour I rarely have the urge to drink alcohol. I actually went through Christmas without a drop. Each time I pour a drink, I drink a sip and then leave it! carolinetraa2000 schrieb: > > Hi Vicky > > I didnt see the article on memory and carbs? Was it on here, I havent > been around much for yonks so not too up to speed with that. > > Conference is March BTW so dont you be going in Feb or we will miss > each other. Hahaha, I'm too funny!! > > Alcohol - I am always stopping and starting but really want to try > off the vino collapso for a while. Its not been an issue for a few > weeks cos had quite strong antibiotics and so didnt feel like > drinking. for me I always find I can happily not drink if I just dont > at all, does that make sense. Like all true Scots it must be the > impossibility of having only one! Moderation is not a word bandied > around much in downtown Glasgow! > > Thats so great about and the signing. I think I used to have a > makaton video if you want to have it, or maybe I borrowed it from > someone. Mandi, perhaps? Does he use Makaton or BSL? > > Is doing OK at his new school? likes being at home and I > think she feels that school just disrupts things for her, its also so > dependent on how she feels which I imagine is pretty rubbish a lot of > the time! Yesterday I heard this thudding in the living room and when > I went thru Harry was teaching her how to jog on the Wii Fit. It was > so funny, she was so loving it. > > We get that kinda funny smell sometimes too. I used to think it was > yeast, bacteria, ammonia... Have you ever looked at viral issues? So > many people have said to me Becks is a viral kid, sigh... something > to explore in the New Year. > > Have a nice evening when it comes around. > Luv Caroline > xx > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG. > Version: 7.5.552 / Virus Database: 270.10.0/1866 - Release Date: 27/12/2008 20:49 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 what age is your boy, i have " signing time " dvd's somewhere i could copy for you. They are american, but lots of fun, and have children on them that are actually " deaf " , which makes it real. My son loved them when he was very young. let me know > > Caroline, yes please!!! have been looking on the internet for signing books > and DVD's how can they justify these prices? He is doing signalong which is > a combination of BSL and Makaton, but we are desperate for resources. > Look at that March, I haven't been keeping up myself, too much going on > these last few months, less chance of snow this time then. > Alcohol- the saying is one is too many and 20 is not enough. I find drinking > lager rather than shorts is better because too many trips to the toilet and > a tendency to fall asleep is kind of limiting lol. The thing is,like smoking > or over eating we live quite different lifes to most other people and anything > that works as a stress buster is harder for us to give up imho. > loves his school, but perhaps too much, my concern now is that it would > make the best respite centre in the UK, so caring and great fun but we now > need to get down to some serious work. I have had Viral issues suggested > before and strangely fits into so many categories, he even has the bullseye > rash of Lyme every Summer, but he descended into autism and gut hell after a > year+ of very strong antibiotics when he was still in his baby buggy at > around 16 months old. Did you ever read the story of the boy it was claimed had > Candida induced autism and was recovered after a good few years of gut > treatment? > I will try and dig it out, have it buried here somewhere. > was like when he was in pain, he didn't want to attend to > anything other than trying to space out of it all, who can blame them, imagine if > we were expected to do anything whilst in severe pain, does she have Reflux? > I can picture the Wii Fii thing, we don't have one, but tell Harry the > latest advice is to warm up first lol. > Vicky > xx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Hi Vicky Just had a look and s videos not the most organised but cant see the Makaton one but will look better in the old cupboard where the disused vids are. i do have 2 fun song factory videos if you want them. I will write a note to myself to check for the makaton one and ask mandi too cos I wonder if I didnt just borrow that one at some point. Luv caroline xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Morning, and happy new year... in your post you talked about your son's play skills. There is a book called Learn to play by Stagnitti who is an occupational therapist. I got this from my son's specialist teacher (In the UK, children who are statemented are assigned a specialist teacher to teach them skills) It gives step by step instructions on how to teach our kids play skills, it is very helpful and straightforward, also gives a lot of alternatives in introducing play the book was published in 1998, i cant find it on google books but this is the ISBN number... More details Learn to Play: A Practical Program to Develop a Child's Imaginative Play Skills By Stagnitti Published by Co-ordinates Publications, 1998 ISBN 0958572100, 9780958572101 137 pages if you prefer i could scan some activities to you... please contact me and let me know and also this goes for any one else as well > > Oooh yes please, BBrowne, he is 11 but still watches things like fun song > factory and such like, his play skills are still very much that of a way younger > child. > He loves to watch signing hence the interest in fun song factory, and one of > his favourites is Dave Benson makaton song video, it's like they are > talking his language, he feels involved. > Amazing a child could be in the education system since 4 yrs old, > statemented at 3 and no one picks up on this, eh? > Vicky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 Thanks very much for this, maybe I could order it from a book shop? had OT for one year, don't think she was that great really, certainly not in the league of Jane Abdullah, anyway's she has cleared off now stating he no longer needs OT!!!! Simply dreadful, we could not have anticipated this turn of event, my guess is she is making more money from her private clients, anyway we are in a battle to get OT reinstated, but you can imagine the situation come AR in June with a private OT writing to LEA and saying he doesn't need any more sessions. So the situation is we are going to have to teach both our children all the stuff [which is most things] not happening in schools, so anything you or anyone else knows that could help us would be very appreciated. I do believe that an awful lot of our time and energy is spent fighting the authorities to achieve very little that we are losing early years that we could intervene ourselves, not ideal as I am no expert but better than point scoring with the LEA's. Having said that hell will freeze over before I let them get away with all these years of stone walling. Vicky Quote Link to comment Share on other sites More sharing options...
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