 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Epilepsy / July 2004sad report
My daughter was crying after her appt. today because she hated the neurologist. We only have 1 pediatric neurologist here and the nearest other options would probably be Seattle, which is 300 miles away. I knew him from a previous meeting where he was a guest speaker at a group I was running for people with bipolar disorder and he spoke on children with bipolar. He is very eccentric, and if I had another choice, I may not have sent her there, because knowing her temperment, I thought she might be not too excited about his "style". As it turned out, he asked alot of questions and cut us off in mid sentence when he wasn't getting the answers he wanted, and apparently he thinks everything is migraine. He says that sleepwalking is migraine, and bedwetting is migraine, and you name it--he can show you how it is related to migraine. He did admit that the EEG and her sx did not actually look like he would expect for a migraine, but he figured it would be that anyway. He says the spots that she sees don't sound at all like epileptiform phenomenon and that the EEG frontal lobe abnormality could just be a hereditary abnormality not related to a seizure disorder. He sounds so much like he knows that what anybody else says is obviously not true, because he keeps saying that all these other dr's call seizures CP, and SP seizures when they are really migraine. It sounds really wacky to me and my daughter was very upset by his manner. She thinks we should go somewhere else--Are we just looking for a label? His advice was to take 2 aspirin 2X a day for 10 days and then exercise and if she does not get episodes then it is definately migraine, and if she does, it might still be migraine, but he might be willing to try seizure medication, though maybe amitryptilin first to once again rule out migraine (though I have taken that med and it seems that the heavy sedation is causes will make her even more sedentary than usual and the main trigger--namely exercise--will be completely removed) I am so frustrated, I can't even describe it!!! cogge I left your Whole post at bottom, in case I come across anything over next week or two. I don't know if there's any kind of 'referral service' within the Ep. Foundation of America site http://efa.org , or as I mentioned earlier if you're near a Local Chapter of the Ep. Foundation of America who might do referrals. If the EFA have any kind of service through that website or contacts there, if you told them which areas you could travel to, they might have a list of Paediatric or General Neurologists they could recommend. . Also it's been a while since I lived 'out west', and I don't know how insurance vs. waiting lists works between U.S. and Canada, but I wondered if you could find someone in Vancouver, British Columbia who'd be better trained to handle her case. (That would **assume you were North or East of Seattle.) Alternatively are you any closer to Idaho? He sounds like he's not a Neurologist, or he graduated in the 1960s. There's nothing more awful for a patient than to have a Doctor they can't be comfortable with. Certainly anyone who thinks the 4-6 types of seizures can all be related to Migraines needs to take an Aspirin and consider retiring. I wonder how many Other patient's lives he's screwed up. (I had a Dr. like that in 1980 when I first had Encephalitis, who thought tranquilizers were the cure-all. Luckily when the seizures started in 1993, my Neurologist was trained at a completely separate school. ) I hope you're able to find someone who can help her. (And his Comments below about Simple Partial and Complex Partial symptoms (as someone who has had both, Plus the **symptoms) are just Plain **Foolish. ) I assume the medication you list at the end is for Migraines, as I've never seen it mentioned Here since Sept. 1997 (when I bought my first computer), by Anyone, for the Treatment of Seizures. (I marked one set of symptoms *I get below with **s that I get your 'neurologist' says that people with seizures don't get.) I also don't remember if you told us your Daughter's Age. Ideas or comments might vary from one or two of the women posting here, depending how old she is. Not being one, that's out of my 'field'. G./ > My daughter was crying after her appt. today because she hated the > neurologist. We only have 1 pediatric neurologist here and the nearest [quoted text clipped - 11 lines] > it is related to migraine. He did admit that the EEG and her sx did not > actually look like he would expect for a migraine, but he figured it would > be that anyway. He says the **spots that she sees don't sound at all like > epileptiform phenomenon (**I get these G./) and that the EEG frontal lobe abnormality could just > be a hereditary abnormality not related to a seizure disorder. He sounds so > much like he knows that what anybody else says is obviously not true, [quoted text clipped - 11 lines] > > cogge > (That would **assume you were North or East of > Seattle.) > Alternatively are you any closer to Idaho? yes, I am in the south east corner of WA state whiuch is about 80 miles from Idaho and 28 miles from Oregon. Portland Oregon is actually roughly the same distance as Seattle from me (about a 3 1/2 hour drive). > He sounds like he's not a Neurologist, or he graduated in the 1960s. Probably--he *is* older. I did some net research on him and found he has actually had his license revoked a couple times and been sued a couple times, though he has somehow been successful at appealing and reversing that decision. I found an alumni website for the medical school which he graduated from and it was bragging about his medical-legal success in appealing those decisions. One was a personal injury case which resulted in the death of a 6 year old child (though he was found not guilty, and the blame fell to the parent for overmedicating the child) OTOH, he is cited in NEJM and other newsletters and periodicals with alot of peer reviewed articles. I don't even know *what* to think. It really seems to me that her sx seem legitimately consistant with SP/CP focal seizures. > There's nothing more awful for a patient than to have a Doctor they can't be > comfortable with. I agree!! > I assume the medication you list at the end is for Migraines, as I've > never seen it mentioned Here it is actually an old tricyclic antidepressant , brand name of Elavil, that has strong anticholinergic side effects, which proves useful for other things. It is used for sleep disorders, bedwetting, and migraines probably more than it is used as an antidepressant, now that the newer AD's have moved in. I have taken it for sleep and I hated it, personally. It causes excessive weight gain and urinary retention, cotton mouth and zombie like flattening. Not what I would wish on a child. > I also don't remember if you told us your Daughter's Age. Yes, she is 12 cogge > > (That would **assume you were North or East of > > Seattle.) [quoted text clipped - 40 lines] > > cogge I think she needs to see another doctor for a second opinion. My opinion is not necessarily due to the qualifications of her current physician either. By the way, my adult daughter started amitriptyline this year for migraines and she said it has helped quite a bit. So far, no problems with side effects. It is wonderful to see my daughter finally feeling better (hope it lasts). Barb 8>< snip >One was a personal injury case which resulted in > the death of a 6 year old child (though he was found not guilty, and the > blame fell to the parent for overmedicating the child) 8>< snip When I was first told my son had epilepsy, the paediatrician prescribed Tegratol for him. He was only a few months old at the time. A number of people were aghast that he was prescribed that drug. I looked it up in a medical book in the library and it said that Tegratol can cause jaundice and kidney failure!! The paediatrician said it didn't say that in *his* book. The Tegratol didn't stop the fits so the paediatrician told me over the phone to increase the dose!!!!!!!! There was *no* mention of the amount, no supervision, no checks, nothing. I could have so easily have overmedicated my son and done him really serious damage, if not killed him. I would have got the blame as the parents of the 6 year old did *because there was nothing in my son's file*!! Then the paediatrician's registrar decided that as the medication wasn't working, they'd prescribe something stronger!! On a tiny baby!! It was at that point I decided enough was enough, kept a diary of what my son had to eat and found that many of his fits were actually down the what he was eating. I told my doctor, showed him the diary I'd kept and the next time I saw the paediatrician, he said "Oh, he's obviously a perfectly healthy child. I don't want to see him again." I didn't say that I was glad because I didn't want to see *him* again either!! I was talking to a midwife later and when I mentioned the paediatrician's name, she said: "Oh him!" So he obviously had a reputation for being next to useless. I hope you manage to find a suitable, properly qualified person in whom you and your daughter have confidence, to treat her. "> I hope you manage to find a suitable, properly qualified person in whom you > and your daughter have confidence, to treat her. Yes, upon further investigation it appars that this neurologist has been cited because he is interested in psychiatry and he was "practicing psychiatry" when he is not licensed to do so. He was sanctioned from prescribing psychotropic meds and was ordered to have a supervising neurologist review all his charts and all new patient assessments. Plus a $10,000 fine. He did not comply and was brought to court again for violating probation. I looked up every other doctor I know--even some who I thought were terrible doctors, and none has any such sanctions as this guy--which sounds like a bad thing. My daughhter is so frustrated, because she wants to get a firm understanding of whats going on and get some treatment. cogge > 8>< snip > >One was a personal injury case which resulted in [quoted text clipped - 21 lines] > eat and found that many of his fits were actually down the what he was > eating. ** I've used Tegretol now for almost 9 years, and the dose was reduced (with a 2nd med. added) about 5 years ago. My understanding (now) is it's Rarely used on someone younger than Adult, as it can attack Calcium in some people, interfering with Bone and Tooth development. There is also risk of withdrawal symptoms or seizures if it's not kept at stable blood levels -- something that's harder to do with someone Young who has a faster Digestion rate than adults. There are also lots of things that can interfere with it (Grapefruit is one, upset stomach remedies and other Cold medicines- especially if they contain Alcohol), but I'd assume now that the Calcium thing in someone whose Bones and Teeth are still developing would be one of the areas where it might cause problems that someone who's younger. Also when I was increasing my dose in 1995, we did Bloodwork about each 4 weeks over 4 months to monitor whatever they were watching for. That was for an Adult using it. G./ > I told my doctor, showed him the diary I'd kept and the next time I saw the > paediatrician, he said "Oh, he's obviously a perfectly healthy child. I [quoted text clipped - 7 lines] > I hope you manage to find a suitable, properly qualified person in whom you > and your daughter have confidence, to treat her. > ** I've used Tegretol now for almost 9 years, and the dose was reduced (with > a 2nd med. added) about 5 years ago. My understanding (now) is it's Rarely [quoted text clipped - 11 lines] > weeks over 4 months to monitor whatever they were watching for. That was > for an Adult using it. G./ There were no blood tests done on my son, he's was under 6 months old at the time; no checks on what he was having to eat, what other medication he might have prescribed for him, nothing. In fact, he was having Infacol for wind. He was born in 1992 and what happened with the paediatrician took place in the first half of 1993. From what you say, it makes me wonder if that paediatrician knew what he was doing at all. It's frightening to think about the potential damage he might have done had I been in awe of doctors and consultants. Ironically, after we'd moved, my son had another incompetent paedicatrician :(( As it turned out, when my dau was first taken ill she was assigned to a different paediatrician and I was able to get my son transferred to the same one and things have been significantly better since then. Well, now that the paediatrician knows to discuss things with me *first* and not try to bulldoze me into accepting treatments without explanation ;)) It seems to me that a few years ago there was a Neurologist in Walla Walla. I Don't recall the name. I hope this is somewhat helpful. Jim > > (That would **assume you were North or East of > > Seattle.) [quoted text clipped - 40 lines] > > cogge there is, but our family doc seems quite insistant the she needs a pediatric neurologist. They have made a referral to Seattle Children's Hospital. She had 3 "episodes" yesterday (I call them that because they have not been "officially" diagnosed as seizures yet--though it seems to me they are) and she crashed afterwards and slept from 4:30 in the afternoon until 9:30 the next morning. She complains now that she is tired all the time and she feels forgetful and mildly disoriented nearly all the time. I have been reading alt.support.headaches.migraine and I still feel like how could it be migraines--it seems so much like sp and cp seizures. I hope they can give her some medicine soon so she feels better ;-( cogge > It seems to me that a few years ago there was a Neurologist in Walla Walla. > I Don't recall the name. I hope this is somewhat helpful. [quoted text clipped - 51 lines] > > > > cogge > My daughter was crying after her appt. today because she hated the > neurologist. We only have 1 pediatric neurologist here and the [quoted text clipped - 31 lines] > > cogge I hate to hear that your daughter does not seem to get the proper medical treatment she deserves. Especially, when you have a so called "strong family history of persons with epilepsy" (if I understood your other postings correctly). It is sad to read that your 12 year old daughter which has her whole live in front of her is being presribed antidepressants to cure something that does not look like migraine or depression :-( She may seem like to be a little bit depressed but most likely that is because of the seizures that happen to her. As said:before: the symptoms you described previously, does sound like JME which you also seem to think. There are good treatments for that and one of them that should not be presribed at this stage are antidepressants :-( I feel so sorry for you and I would certainly drive that 3.5 hours to another city / another doctor -especially because your daughter may feel better of that.  SignatureTake care. Bye, Marco Cogge and daughter, I was around your daughter's age when I started to have seizures. I lived in Alaska and didn't know what a seizure was, so I just figured I was fainting. The stupid doctor's in my little town didn't even do any testing. So I wasn't diagnosed until I was 18 and had a beauty of a grand mal, but by then I was living in Idaho and the doctor here knew right away what to do. He did an eeg and put me on medication. Have you thought about a doctor in Spokane? If you want I can give you the Executive Director of the Epilepsy Foundation of Idaho's email address and he may know of a good neurologist in NE Washington. Tell your daughter to hang in there. Doctors are just people they don't know it all. We have to empower ourselves and do what is best for ourselves. So find a better doctor and don't get discouraged. Take care, Julie Walton, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilespyidaho.org > My daughter was crying after her appt. today because she hated the > neurologist. We only have 1 pediatric neurologist here and the nearest [quoted text clipped - 28 lines] > > cogge > Cogge and daughter, I was around your daughter's age when I started to have > seizures. <snip>I> Have you thought about a doctor in Spokane? If you want I can give you the > Executive Director of the Epilepsy Foundation of Idaho's email address and he > may know of a good neurologist in NE Washington. [quoted text clipped - 3 lines] > Epilepsy Foundation of Idaho > http://www.epilespyidaho.org There is only one pediatric neurologist office there and they are not accepting any new patients until after september. ;-( I may end up going to Seattle Children's hospital or something. Maybe Portland OSU because they are roughly the same distance (and I'd rather drive around lost in Portland than drive around lost in Seattle!!) It seems excessively triggered off by exercise, and now that she is not in softball and school is over (no PE) she doesn't get many--I had her run around the track (per dr suggestion after taking aspirin) and she still had sparkly lights from it but she doesn't get enough physical and mental stimulation now that it is summer, to trigger them off so much. I just hope we can get it figured out soon! cogge You could give this a try: http://www.epilepsyfoundation.org/drsearch.cfm It's a search for epilepsy doctors... but I gave it a try and keyed in my zip code. I live in Boise. It came up with one doctor in Idaho Falls - no doctors in Boise. So I wouldn't put alot of faith in this search. Here is the URL for the Epilepsy Foundation of Oregon http://www.epilepsyfoundation.org/oregon/ and the Epilepsy Foundation of Washington http://www.epilepsyfoundation.org/washington/ Take care, Julie > > Cogge and daughter, I was around your daughter's age when I started to > have [quoted text clipped - 23 lines] > > cogge |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.