Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Jackie, I have no idea about this but please keep us posted. You said that she started shaking and had done this before. Did she do this often? I wish you the best in all of this. Although you lurk this is something the rest of us will be wondering about. Could you share what the neurologist says? Sometimes the things that are first said to be rare seem to me to end up not so rare. Again, all the best. Bonnie, Mom to Kris 22, Patty CHARGE 20 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Hi Jackie, I know this really dosen't apply to your question, but my son has seizures; he'll be three this October though. However, he never had seizures until he got very ill in 2004. He suffered major brain damage, and has seizures through out the day... I'll keep you and your daughter in our thoughts and prayers... - Kristy Mother to Kaleb > Hello Everyone, > I am a true " lurker' on this list serve! One of the first to join this > list serve in the beginning and I do keep up with all of you through > lurking. > > Today I am writing as we had an eventful weekend! is 20-she will > be 21 in February- and has been doing well healthwise. The only meds > she takes are a little Paxil and an eye med for her phthsis-closing > down- of her left eye. Her heart has been good for years and she has > been in a good state. > On Saturday morning I gave her a hand out of the bathtub and she > started shaking which is not unusual but the shaking got worse and she > got stiff and then blue -this all happened within 5 minutes. We called > 911 and she was already getting back to normal by the time they > arrived. Well, she had a seizure. We have not dealt with this and we > are going to see a neurologist. > > My question to the list serve and any Drs. is how often has this > happened in later years with CHARGERS? I spoke with a Mom in New Mexico > whose son has started having seizures at 26. On the website this is > listed as " rare " but I am wondering. Any info you can give me will be > very much appreciated as we hope the see the neurologist soon. > > Many thanks, > Jackie > Jackie Kenley, Family Specialist > California Deaf-Blind Services > San Francisco State University > 1600 Holloway > San Francisco, CA 94132 > > 1 ext 3 (in CA only) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Perhaps in Dr. Blake's study of the young adults we will know more on this, but I don't think there are any stats published thus far? Two boys with confirmed CHARGE I had both developed seizures in the teens, perhaps something with the hormonal imbalances going on who knows. One parent contacted me recently about a finding of an excess of cerebral spinal fluid and a linkage with severe headaches, and optic nerve compression but with no other medical reason (like bacteria or anything) and looking further to more neurologist testing. Not sure if that would ever be linked to seizures but worth mentioning. Sorry to hear about this. Ann Gloyn, Canada > Hello Everyone, > I am a true " lurker' on this list serve! One of the first to join this > list serve in the beginning and I do keep up with all of you through > lurking. > > Today I am writing as we had an eventful weekend! is 20-she will > be 21 in February- and has been doing well healthwise. The only meds > she takes are a little Paxil and an eye med for her phthsis- closing > down- of her left eye. Her heart has been good for years and she has > been in a good state. > On Saturday morning I gave her a hand out of the bathtub and she > started shaking which is not unusual but the shaking got worse and she > got stiff and then blue -this all happened within 5 minutes. We called > 911 and she was already getting back to normal by the time they > arrived. Well, she had a seizure. We have not dealt with this and we > are going to see a neurologist. > > My question to the list serve and any Drs. is how often has this > happened in later years with CHARGERS? I spoke with a Mom in New Mexico > whose son has started having seizures at 26. On the website this is > listed as " rare " but I am wondering. Any info you can give me will be > very much appreciated as we hope the see the neurologist soon. > > Many thanks, > Jackie > Jackie Kenley, Family Specialist > California Deaf-Blind Services > San Francisco State University > 1600 Holloway > San Francisco, CA 94132 > > 1 ext 3 (in CA only) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2012 Report Share Posted June 18, 2012 My name is Leigh Anne, I have been a member of this forum for a long time now, but have not participated in quite a while. I suffer from osteoarthritis in my lower back and a severely compressed disc T-5. Last week my general practitioner basically dumped me for missing an appointment, this was innocent on my part, I am human and I forgot. The doctor has me on morphine and oxycodone. He did write me scripts to get through the next 30 days, but after that I do not know what to do. Is what he did unethical? Is there anything I can do, and what rights do I have as a patient on narcotics? Please let me know if you have any links or suggestions for me. I am considering going to a pain clinic and getting off the narcotics and dealing my pain in other ways. I am shocked and depressed and very stressed over this situation. I truly do not know what to do here. I hate feeling this way, it is really eating me up inside. I will appreciate any help I can get right now. Thanks much, Leigh Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2012 Report Share Posted June 18, 2012 It really sounds like he was looking for an excuse to get rid of you.  Most pain doctors require a referral, your doctor should give you a referral and you need to find a pain doctor who prescribes opioid pain meds. It is unlikely that you will get an appointment before your script runs out and believe me, I feel your fear and worry. I have been there. What doses are you on now? I would ask your ex-doctor for help to prevent withdrawal symptoms, which can be very terrible and dangerous for some people.  Call the hospital and talk to social services, tell them what your problem is and how you fear withdrawal if you do not get an appointment with another doctor. Did you have a contract with your GP? Did it say he will dismiss you if you miss an appointment? I hate being under the control of a doctor who knows I am going to suffer without my medications. What state are you in? Jennette > Leigh Anne wrote: > Last week my general practitioner basically dumped me for missing an appointment, this was innocent on my part, I am human and I forgot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 I think you are right, I just didn't see it. This doc is just a general practitioner who happens to write narcotic RX for some of his chronic pain patients. Since I wrote this post I did find a pain clinic, so I'm feeling much less stress, at least I have a doc again. This will be the first time I have ever been to a pain clinic, I'm not sure what to expect. I did manage to get an appointment for mid-July, which is the same time my narcotics run out. How in the heck can doctors just dump their patients on narcotics like that? Aren't they responsible for putting the patients on the pills in the first place? Don't they have any kind of conscience at all? I will never forgive him for what he did to me, and the stress he put me through. I have anxiety, depression, and the chronic pain. I felt like he was throwing me away like yesterdays garbage. Thanks for listening, you all rock! Leigh Anne --- Jennette wrote: > > It really sounds like he was looking for an excuse to get rid of you.  Most pain doctors require a referral, your doctor should give you a referral and you need to find a pain doctor who prescribes opioid pain meds. It is unlikely that you will get an appointment before your script runs out and believe me, I feel your fear and worry. I have been there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 Leigh Anne wrote: > How in the heck can doctors just dump their patients on narcotics like that? Aren't they responsible for putting the patients on the pills in the first place? Don't they have any kind of conscience at all? It's actually not much different than dumping a patient who is on medication for high blood pressure, diabetes, etc. In truth it's " safer " to dump a patient who is taking a narcotic, than someone who is on medication for life threatening illnesses. Going off a narcotic can be done in a couple of weeks with some discomfort. Going of high blood pressure medication, even with tapering, can kill a person. There are lots of doctors who think nothing of dumping a patient, or closing a practice and moving without bothering to tell current patients. I think those kind of doctors should get really sick, and really scared, for awhile. It just might jar them into reality. Lyndi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 So glad you are set up to go to a pain clinic! Make sure you take whatever test results you have. Make a list of dates of surgeries and what they were for, even if they are not related. Tell them which pain meds have worked and which haven't. Tell them any pain treatments you have had and when such as injections, pt sessions, etc. It will save a lot of time. I think what your doc did was a lot of crap. If he felt uncomfortable continuing to prescribe narcotics, then explain that and give you a referral. I don't know exactly the legal aspects. I know a doctor can terminate a patient if they feel that the problem is beyond their expertise, the pt is completely uncooperative or has not been seen face to face which a certain max time frame. I think most doctors want to find a " fix " for their patients' problems. Neither treatment x and the problem is gone or take this pill and the symptoms are under control. I don't think they like to admit that it is hard to feel that they can not really fix the problem. It seems they are trained to have all the answers. Some want to blame us for their frustration. Why can't they just tell us that they feel out of their training and it might be better to see this type of doctor! I could live with that. Don't jerk my chain. I have been there and gone through that with my former GP. I found a differ one. Understand your frustration. I think pain management will be a help. Lots of gentle hugs, Tami --- Leigh Anne wrote: > > > This will be the first time I have ever been to a pain clinic, I'm not sure what to expect. I did manage to get an appointment for mid-July, which is the same time my narcotics run out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 Why can't they just tell us that they feel out of their training and it might be better to see this type of doctor! I could live with that. Don't jerk my chain. I have been there and gone through that with my former GP. I found a different one. ** when I told my doctor I was pregnant in December 2002, he couldn't write the referral to MN Perinatology Clinic ~ the High Risk OB clinic ~ fast enough! It was actually pretty funny! He wanted NOTHING to do with me pregnant because I was so high risk!! ** Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.