Guest guest Posted October 3, 2003 Report Share Posted October 3, 2003 He He, somhow I missed this post. That is rude. Sheeshe. It is a collectors item. Well I better get out of here for now!!! See you guys in a few!! Re: Cindy My sister asked me what I wanted for my Bday I said the Diaper bag we seen with Eeyore on it she wouldnt get it for me Said i Should be PG first HOW RUDE lol...I collect Eeyore Clarissa likes it too My next child will too Has no choice lol Cindy > > > > Cindy > > As a matter of fact she has three eyeore toys one is a stuffed > > eyeore that is a rattle one hags on the crib and plays music and the > > other is just a stuffed eyeore. You are too funny. Thanks everyone > > you make me laugh atleast. > > Hugs > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2003 Report Share Posted October 3, 2003 He He, somhow I missed this post. That is rude. Sheeshe. It is a collectors item. Well I better get out of here for now!!! See you guys in a few!! Re: Cindy My sister asked me what I wanted for my Bday I said the Diaper bag we seen with Eeyore on it she wouldnt get it for me Said i Should be PG first HOW RUDE lol...I collect Eeyore Clarissa likes it too My next child will too Has no choice lol Cindy > > > > Cindy > > As a matter of fact she has three eyeore toys one is a stuffed > > eyeore that is a rattle one hags on the crib and plays music and the > > other is just a stuffed eyeore. You are too funny. Thanks everyone > > you make me laugh atleast. > > Hugs > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Cindy I am JoAnn and was just reading your and 's messages....by the way hello , got to phone you soon. Anyway if by chance you two are speaking of being on Duragesic and getting the coverings for them, that is what I had to do also. Just want to tell you both, if this is med talking about, never phone and ask about any slight, seldom, rare, redness in one minor spot...or anything as they will stop sending the covers right then, and cannot even get them if offer to pay, in fact will tell you to stop taking the Duragesic. I knew the covers, if put on to tight, if sweated to much, or just some odd thing happened that just few times would get line or mark but never was from the med patch. So just to protect you from loosing these covers wanted to let you both know what may still happen if called about any problem, no matter how minor and even if problem not from med patch.. Hope you do not mind my speaking up on this Cindy and especially since not sure which med speaking of. But take care and Cindy, sorry your son is dealing with RSD. How long has he had it Cindy. My daughter was struck with this over 8 years ago and not doing well now, but then most all of us have ups and downs. So I also been diagnosed with Fibro and rsd but started on digest from start of being diagnosed as knew nothing at all about it. You will find you learn alot on here and have alot of compassion sent to you and son. You two take care and tell Stacey hello for me please. Hugs JoAnn s MommaKM86@... wrote: It worked Cindy. They're sending me the cover patches. I had to play '20 questions' on how I apply the patch etc before she'd consent to sending them. In a message dated 1/6/2005 3:19:47 PM Eastern Standard Time, RSD-CRPSofAmerica writes: Date: Thu, 6 Jan 2005 07:50:25 EST From: KM86@...Subject: patches CindyThanks Cindy. I'll try againIn a message dated 1/6/2005 1:10:01 AM Eastern Standard Time, RSD-CRPSofAmerica writes:Date: Wed, 5 Jan 2005 23:07:55 -0500Subject: Re: Patches CindyI talked to a lady who answered the phone. Told her my son was on the patch and asked for the tegaderm covering. She took my address and sent them. My mom gets them too. I was that simple for me. Just try again, maybe you'll get someone different. This is the number I called.....1-800-JANSSEN (526-7736), 9:00am - 5:00pm (EST), Monday through Friday. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 From: JoAnn Ford To: RSD-CRPSofAmerica Sent: Thursday, January 06, 2005 8:33 PM Subject: Re: Cindy Hope you do not mind my speaking up on this Cindy and especially since not sure which med speaking of. But take care and Cindy, sorry your son is dealing with RSD. How long has he had it Cindy. .....Hugs JoAnn s Momma *********************************** Hi JoAnn, yes we were talking about the Duragisic patch. Dylan was on it for about 6 months but the side affects were too much for him to handle even though it gave him the best pain releif. As far as the RSD we are still trying to get a definate DX. A rhuemy at Cleveland Clinic and a Nerosurgen at the Chiari Institute think it is, the Primary does not. We had an appointment with a ortho Dr, but he turned down to see him. We are used to that. We have been turned down and fired buy more Docs than I can count now. They can't "fix" him so they don't want him. The primary is trying to help us, but he says it will be hard. Our primary is a professer, a teaching Dr, he choose to take Dylan on, I called the local big hospital and talked to the onbudsman. Told her our situation and she searched for a Dr that was willing to take him on. It is a shame that in a large City like Detroit, that no Dr wants to help a child. What did they go to school for??? Every one doesn't just have a cold or even Cancer. Some people have things that can not be fixed, and Docs stear away. I have had him all over the country trying to find help, and no one can make him feel a bit better. His DX list is too long. Genetics really suck. He is the youngest of 5 boys the others all totally healthy, everything any one ever had for generations got bombarded on him. It just doesn't make since. I can see I'm venting again. I suppose it is because two Specially chosen Drs turned us down today again by my primaries request. Not that I want to wish this on any one... but wouldn't it be nice if a Dr really understood what it is like to have a child in such pain? Or if they, themselves for just a milasecound, felt our pain? I guess it's the old saying..... You kiss allot of toads before you find a Prince. It appears Doctors are the same. Thank God for the Princes/Princsesses we find in the crowd. Cindy KM86@... wrote: It worked Cindy. They're sending me the cover patches. I had to play '20 questions' on how I apply the patch etc before she'd consent to sending them. In a message dated 1/6/2005 3:19:47 PM Eastern Standard Time, RSD-CRPSofAmerica writes: Date: Thu, 6 Jan 2005 07:50:25 EST From: KM86@...Subject: patches CindyThanks Cindy. I'll try againIn a message dated 1/6/2005 1:10:01 AM Eastern Standard Time, RSD-CRPSofAmerica writes:Date: Wed, 5 Jan 2005 23:07:55 -0500Subject: Re: Patches CindyI talked to a lady who answered the phone. Told her my son was on the patch and asked for the tegaderm covering. She took my address and sent them. My mom gets them too. I was that simple for me. Just try again, maybe you'll get someone different. This is the number I called.....1-800-JANSSEN (526-7736), 9:00am - 5:00pm (EST), Monday through Friday. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Cindy - I'll find the website for you....I think it was part of the RSD Foundation that talks about RSD and kids. Wait. Here's the website I've been looking for: http://www.rsdfoundation.org/children.html Perhaps there are some docs mentioned there that work with kids? I know, at least, that there has been an increase in research about RSD/CRPS with kids. I'm so sorry for all of the frustration that you're having to contend with. While it's hard for those of us to deal with similar frustrations when we're hurting, I think I would rather have to be frustrated finding help for myself than having to cope with finding it for a child in so much pain. I can't imagine the helplessness you must be feeling. BarbaraCindy wrote: Hi JoAnn, yes we were talking about the Duragisic patch. Dylan was on it for about 6 months but the side affects were too much for him to handle even though it gave him the best pain releif. As far as the RSD we are still trying to get a definate DX. A rhuemy at Cleveland Clinic and a Nerosurgen at the Chiari Institute think it is, the Primary does not. We had an appointment with a ortho Dr, but he turned down to see him. We are used to that. We have been turned down and fired buy more Docs than I can count now. They can't "fix" him so they don't want him. The primary is trying to help us, but he says it will be hard. Our primary is a professer, a teaching Dr, he choose to take Dylan on, I called the local big hospital and talked to the onbudsman. Told her our situation and she searched for a Dr that was willing to take him on. It is a shame that in a large City like Detroit, that no Dr wants to help a child. What did they go to school for??? Every one doesn't just have a cold or even Cancer. Some people have things that can not be fixed, and Docs stear away. I have had him all over the country trying to find help, and no one can make him feel a bit better. His DX list is too long. Genetics really suck. He is the youngest of 5 boys the others all totally healthy, everything any one ever had for generations got bombarded on him. It just doesn't make since. I can see I'm venting again. I suppose it is because two Specially chosen Drs turned us down today again by my primaries request. Not that I want to wish this on any one... but wouldn't it be nice if a Dr really understood what it is like to have a child in such pain? Or if they, themselves for just a milasecound, felt our pain? I guess it's the old saying..... You kiss allot of toads before you find a Prince. It appears Doctors are the same. Thank God for the Princes/Princsesses we find in the crowd. Cindy KM86@... wrote: It worked Cindy. They're sending me the cover patches. I had to play '20 questions' on how I apply the patch etc before she'd consent to sending them. In a message dated 1/6/2005 3:19:47 PM Eastern Standard Time, RSD-CRPSofAmerica writes: Date: Thu, 6 Jan 2005 07:50:25 EST From: KM86@...Subject: patches CindyThanks Cindy. I'll try againIn a message dated 1/6/2005 1:10:01 AM Eastern Standard Time, RSD-CRPSofAmerica writes:Date: Wed, 5 Jan 2005 23:07:55 -0500Subject: Re: Patches CindyI talked to a lady who answered the phone. Told her my son was on the patch and asked for the tegaderm covering. She took my address and sent them. My mom gets them too. I was that simple for me. Just try again, maybe you'll get someone different. This is the number I called.....1-800-JANSSEN (526-7736), 9:00am - 5:00pm (EST), Monday through Friday. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 hello. what stage eds is your son. who else has it in the family. it seems lie it strikes any age. i was reaing about it and there is a lot of information abot it but not much help for it. nih is a good place. my son is the child in the movie " the boy in the glass bubble. " we went to nih for 12 years. they learn a lot about my son illness and we did also. has he tried hyber treatemnet (HBO). this is where you take a dive like the dicers do when they get the bends. i have seen a lot of help with this treatment. the pump may make your son be able to live a better quality of life. take care of your self also. cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 From: fishthatsmiles@... To: RSD-CRPSofAmerica .... what stage eds is your son. who else has it in the family. ....my son is the child in the movie "the boy in the glass bubble." we wentto nih for 12 years. ...the pump may make your son be able to live abetter quality of life..... cathy ***************** I did see that movie about the boy in the bubble. That is your son the movie was about? You have been through allot too. It is the hardest thing to deal with an ill child long term. Dylan is type 3. There is no stages of EDS. There are types. Each type has a different colagin (SP?) that is missing or not complete. He has type 2 cross overs so that means the collagin that affects type 2 is not quiet right in him too. He it very bad, I have it just a little, and my mom did OK most her life,she is worse than me but not as bad as him. If an answer truely can't be found as to what is wrong with his knee, I'm ready to have him get the pump. Problem is, he is suppose to get yearly MRI's of the brain to keep an eye on his Chiari. With the pump, he can't get them. Chiari is a disorder where the end of cerabelum tonsils falls in to the spinal column. It drasticly slows the spinal fluid flow, and creates allot of symptems. Dylan has a pocket of fluid that is smashing his pituitary gland. That is called Empty Sella. Getting the MRI's is important, but so is him having a life worth living with reduced pain. Hard decission to make. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 cindy: how is your daughter doing? isn't she coming hm soon? haven't heard from you in awale. Lydia is doing very well. she's going to the therapeutic day school in the mornings, taking algebra, jr lit, and history then she goes to the voc school in the p.m. for the early childhood program. she LOVES that part of her day and is doing well as far as i can tell. we haven't seen grades yet. she changed jobs from taco bell to a local grocery store. she's a checker and seems to do well w/ that. she works maybe 3 evenings/wk which is enough. she also spends a lot of time on-line which i don't like but i'm glad she's not running around, using drugs anymore. she's 100% compliant w/ her meds and therapy. last time she saw the psychiatrist, she expressed a desire to get off meds. hopefully when she sees her again in Oct. this won't be still an issue. sometimes she drops things and they aren't that important. hope your family is doing well! Ann --------------------------------- Yahoo! for Good Click here to donate to the Hurricane Katrina relief effort. Quote Link to comment Share on other sites More sharing options...
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