Yoga Posturas » Yoga Position » visit to neurologist
visit to neurologist
Question:
I will be interested to check into the sensory integration site that Blessed mentioned….
Elaine, If the site doesn’t give you enough info, I also ordered copies of their pamphlets, which really explain a lot of stuff … now I can see that my son’s "cute" posture and walk are neuromuscular and will hopefully be helped by OT … Good luck, Blessed
Response:
She also walks (again, off and on in bouts) with her toes pulled up quite a lot. It’s really quite interesting, although it makes my feet want to cramp up!
Lisa, My son once briefly had a tic where he curled his toes up constantly … just realizing that since the beginning of December, he seems to be down to only one tic (mild clicking noise in the back of his throat, mostly when riding in the car …) Blessed
Response:
This is such an interesting post and is very similar to our experiences with doctors. We now have a good neuropsychiatrist to treat our son with TS/ADHD/OCD. I once called a psychologist who was recommended to me as someone being very familiar with TS, and was told by the receptionist that he had treated "lots" of TS patients. I asked exactly how many and she got back to me later with "Two". You do have to really dig sometimes to find a competent psysician. I was also told by a neurologist that he got all the way through med school without knowing that OCD can be a part of TS and that we might want to see someone else to treat that. I really respected him for telling me that, but then I was very disturbed to hear him say that he thought support groups were not a good idea because they make people’s tics worse. I assured him that the good they do outweighs any temporary worsening of the tics. — Cecelia Cox
Response:
BlessedBy2 <blessed…@aol.com
skrev i artiklen
<19971225185001.NAA21…@ladder01.news.aol.com
…
<snip
http://home.earthlink.net/~sensoryint/
Blessed, I love your ability to point out things like this one. We all learned things to be good or bad. It was good to be able to tuch toes with straight knees. Our teacher in the gymnastics class told us so. It was bad to not be able to throw the little rubber ball the required distance to earn the ’sports medal’ in bronze. Now I know this has to do with muscle development in upper part of my chest, back and overarms. My legs was in much better shape. I used to use them 
But when I learned to swim, this included new muscles. This gave me lots of trouble with knees locking. I have recently been told this is most probably due to a developmental disorder in the brain. When feeling well, muscular caused joint locking is not likely to happen. If ancles ( my grown up self ) locks, this is a sign that the neurotransmitters are low. If it goes on for a while, it will affect my mental state in direction of OCD and depression. For some time now, I have been on a milk and grain free diet. This has had a remarkable effect on me. I have stopped tapping my feet and jerking my neck. I have been more calm, and less frustrated. The latter probably due to a better short time memory. I am more able to deal with interrupts. I try not to be obsessive about what I eat. However I have to, as some foods will kick me off, tap-tap-tap—- If anyone is interrested, there is a norwegian web-site on the connection between Tourette’s and food. (norwegian language) http://home.sol.no/~nbottolf/ To my knowledge the implied proteins are gluten, casein (milk), blood proteins, and more preprocessed versions of the same. This would be more concentrated, and labeled on foods as MSG, dehydrated vegetable proteins, d. animal p., milk proteins, natriumglutamate and so on. Some substances will kick me off. Other will be calming, and possibly blocking sensory inputs.
Good luck, and I hope you’re having a wonderful Christmas.
The same to you all!
God Bless, BB2
Martin Finne who enjoy lots of good food in xmas tap..tap..tap :-/
Response:
BlessedBy2 wrote:
I will be interested to check into the sensory integration site that Blessed mentioned…. Elaine, If the site doesn’t give you enough info, I also ordered copies of their pamphlets, which really explain a lot of stuff … now I can see that my son’s "cute" posture and walk are neuromuscular and will hopefully be helped by OT … Good luck, Blessed
Yes, I would be interested in seeing a pamphlet. Do you feel that the neuromuscular things are related to TS? I haven’t heard much about this…. Thanks Elaine
Response:
Yes, I would be interested in seeing a pamphlet. Do you feel that the neuromuscular things are related to TS? I haven’t heard much about this…. Thanks Elaine
I don’t know if they’re "related" to TS, as I’m not sure we understand that much about the genetics of TS or the genetics of some sensory integration issues. I don’t even know if there is a high rate of comorbidity between TS and sensory integration issues and/or other motor difficulties. I learned about OT for sensory integration via my son’s best friend, and a lot of what I read applied to my son. The information about proprioception (sense or awareness of body position) applies a lot to my son. Perhaps sensory integration difficulties occur in some TS children for reasons we don’t understand yet or perhaps they’re genetically related. Two of the three pamphlets I have can be ordered through Sensory Integration International in Torrance, CA. Their phone number is (310) 320-9986 and I believe the pamphlets are described in the website: http://home.earthlink.net/~sensoryint/ They are "A Parent’s Guide to Understanding Sensory Integration" and "Understanding Sensory and Motor Challenges in the Classroom". The third pamphlet that I have is "The Relationship of Learning Problems and Classroom Performance to Sensory Integration" and (I think) it should be available from Norma J. Quirk, MS, OTR, 131 Dumas Road, Cherry Hill, NJ 08003.
Response:
They are "A Parent’s Guide to Understanding Sensory Integration" and "Understanding Sensory and Motor Challenges in the Classroom".
Elaine, my mail to you was returned <darn, just when I was going to ask you if you recommend using Earthlink !!
, but I also added that although these
pamphlets are directed at children and classroom issues, I think they would still contain helpful info for an adult with TS.
Response:
BlessedBy2 wrote:
I don’t know if they’re "related" to TS, as I’m not sure we understand that – Hide quoted text — Show quoted text -
much about the genetics of TS or the genetics of some sensory integration issues. I don’t even know if there is a high rate of comorbidity between TS and sensory integration issues and/or other motor difficulties. I learned about OT for sensory integration via my son’s best friend, and a lot of what I read applied to my son. The information about proprioception (sense or awareness of body position) applies a lot to my son. Perhaps sensory integration difficulties occur in some TS children for reasons we don’t understand yet or perhaps they’re genetically related. Two of the three pamphlets I have can be ordered through Sensory Integration International in Torrance, CA. Their phone number is (310) 320-9986 and I believe the pamphlets are described in the website: http://home.earthlink.net/~sensoryint/ They are "A Parent’s Guide to Understanding Sensory Integration" and "Understanding Sensory and Motor Challenges in the Classroom". The third pamphlet that I have is "The Relationship of Learning Problems and Classroom Performance to Sensory Integration" and (I think) it should be available from Norma J. Quirk, MS, OTR, 131 Dumas Road, Cherry Hill, NJ 08003.
Thanks for the info! I’ll check it out… Elaine
Response:
Elaine, my mail to you was returned <darn, just when I was going to ask you if you recommend using Earthlink !!, but I also added that although these pamphlets are directed at children and classroom issues, I think they would still contain helpful info for an adult with TS.
Actually, I have been very please with Earthlink…so don’t let that discourage you….it actually was "operator error" … you know…the nut behind the wheel… ME! I didn’t know it until recently that on the newsgroups I had my reply to address entered wrong in my preferences. I just changed it recently, so nothing that is responded to on this board by hitting "reply" will get to me because I had it entered wrong. If you want to get it to me, remove the eln_ before zocol…@earthlink.net Someone on the board fortunately posted a response that they were sending to me so I actually saw where the error was and caught it. See AST is a multi purpose board! Elaine
Response:
On Sun, 28 Dec 1997, zocoloco wrote:
Lisa wrote: BTW, anyone else have problems with their child not wanting to sit on their bottom if it isn’t absolutely necessary? Tiff will sit on her feet or put a leg under her rather than sit all the way down. Hi Lisa…. This is interesting…. I do this a lot as well….sitting on my feet or putting a leg under….
Strange. I do this too. I often pull a leg under me – or sometimes even both, so that I sit in a kind of yoga position in my chair, or hang a leg over the armrest. My alltime favorite posture was sitting crosslegged on the table, when all the other chairs had been taken It doesn’t really have anything to do with an aversion to sitting in your bottom, per se. I remember that the Pretoria TS support group discussed this a few months ago, and one woman said that an occupational therapist (?) mentioned that kids with TS seem to have slightly lower muscle tone when inactive, and all the weird postures may be a unconcious attempt to get tension into the muscles. But that’s all vaguely remembered hearsay. — ,_ /_) /| / / i e t e r / |/ a g e l
Response:
I was also told by a neurologist that he got all the way through med school without knowing that OCD can be a part of TS
Well the psychiatrist that I spoke with, who is in his forties and went to a top medical school and is board certified, never even knew that TS and OCD were comorbid disorders. When he told me this, I made him open up his copy of the DSM that was sitting there on his desk to read about the connection. I also showed him an article about TS as well. He then said that he thought TS was "exceedingly rare" and that he never saw one case of it!!!! I told him that I bet he has patients with this disorder and doesn’t know it. I told him to look for mild tics in anyone who comes in with OCD or ADD. I really think that what I said to him went in one ear and out the next. I haven’t spoken to him since, and it has been over a year now, I feel like going back to his office to reiterate what I have told him and to find out if he has diagnosed anyone since. What do you all think?
Response:
Elaine, She also walks (again, off and on in bouts) with her toes pulled up quite a lot. It’s really quite interesting, although it makes my feet want to cramp up! – Hide quoted text — Show quoted text -zocoloco wrote:
Lisa wrote: BTW, anyone else have problems with their child not wanting to sit on their bottom if it isn’t absolutely necessary? Tiff will sit on her feet or put a leg under her rather than sit all the way down. This comes and goes, mostly comes, though, for weeks at a time. Just a thought… Hi Lisa…. This is interesting…. I do this a lot as well….sitting on my feet or putting a leg under….sitting in unusual postures…. I never even really thought about it being anything until you mentioned it here. I am 38 years old and have TS. Many people over the years have commented one how I stand much of the time when I am not moving…and have told me how "unnatural" my stance is (hard to explain, but basically where most of the weight shifts to one left and my hips go to the side). To me it is very comfortable…to other people, they say it is very uncomfortable. I remember things being told to me about my posture growing up as well. I wonder if this was somehow related to TS but never known at the time. I will be interested to check into the sensory integration site that Blessed mentioned…. Let me know what you find out. Thanks Elaine
Response:
Lisa wrote:
BTW, anyone else have problems with their child not wanting to sit on their bottom if it isn’t absolutely necessary? Tiff will sit on her feet or put a leg under her rather than sit all the way down. This comes and goes, mostly comes, though, for weeks at a time. Just a thought…
Hi Lisa…. This is interesting…. I do this a lot as well….sitting on my feet or putting a leg under….sitting in unusual postures…. I never even really thought about it being anything until you mentioned it here. I am 38 years old and have TS. Many people over the years have commented one how I stand much of the time when I am not moving…and have told me how "unnatural" my stance is (hard to explain, but basically where most of the weight shifts to one left and my hips go to the side). To me it is very comfortable…to other people, they say it is very uncomfortable. I remember things being told to me about my posture growing up as well. I wonder if this was somehow related to TS but never known at the time. I will be interested to check into the sensory integration site that Blessed mentioned…. Let me know what you find out. Thanks Elaine
Response:
Lisa writes:
Then she mentioned in her office that "she has done very well while she has been here". I could feel my eyes wanting to roll ALL the way to the back of my head. Especially since as soon as the nurse left the room, she started pinching her lip again. Just because she doesn’t SEE the tic behavior in the 15 minutes she was with her, does that mean I’m nuts?? Hi Lisa, Many of us here on ast have had a similar experience. It just shows you how few physicians have the expertise to adequately treat patients with TS. After I relayed a similar story to a family member the suggestion was made to video tape my child at home, so that the physician would be able to view my child in his natural surroundings, rather than in a clinical setting where my son feels compelled to impress the doctor with his ability to suppress his tics. Regards, Diane in CT
Response:
Fenisz wrote:
Get a PDR(Physician’s Desk Reference) Know about every drug and
its side affects.
The PDR is a good reference; however, it should not be taken as the only or final word. Most medical professionals, who prescribe medications, learn that along with pharmacists in their training. The information in the PDR is often based on initial research, includes any possible side effects that occurred during the time of research, whether or not they may have been related to the medication, and the information is not always current. For example, the last I checked the PDR still indicated that the medication our daughter is on, Nortriptyline (generic for Pamelor) was not indicated for children. I was real uneasy about her taking it, initially, because of that. We have friends who are pharmacists who reassured us, as did her physician, by providing us with a copy of the research article on its use with children. She started taking this 4 years ago (and has basically no side effects); her tics, which were complex motor and vocal, are minimal, if any. Also, the American Pharmaceutical Association published a book regarding pediatric medications which includes information about how and when to use this medication (as well as many others) with children. There are even more current sources regarding different medications which can probably be located through a computer search as well.
Response:
I think that the next time we see her, we will have an arsenal of information WITH us, so we aren’t relying totally on her library!
<snip
I think I’ll give the doc a call next week, I have some questions that need to be cleared up.
Lisa, One thing that I do to save my office time with a Dr. is to make liberal use of the fax machine. Anything that you want a Dr. to be up to speed on before you see them or talk to them can be faxed or mailed to them. That way, you don’t have to take your office visit time waiting for them to go through it. (This is a money-saver when the clock is running in a shrink visit.) Keep it brief, thorough, and well-written. I don’t feel that I should have to pay to educate them. I usually summarize all of my routine questions/comments into a fax that I send to all of my son’s doctors to make sure they’re all on the same page and all know that I’m checking on them … it keeps them on their toes and saves my time and money, and just makes everything more efficient. As with so much of TS, it means I have to be the "team leader" of my son’s care. It has also meant that all of my son’s doctors are learning as I learn.
Lisa BTW, anyone else have problems with their child not wanting to sit on their bottom if it isn’t absolutely necessary? Tiff will sit on her feet or put a leg under her rather than sit all the way down. This comes and goes, mostly comes, though, for weeks at a time. Just a thought…
This could be a balance thing. Have you looked into sensory integration issues or talked with an occupational therapist? My son’s strange postures, ways of sitting, and other things were neuromuscular developmental issues that only an OT was able to pick up on. Seems that he has no muscle development in his back, so that he is able to completely touch his shoulder blades together, and this affects many other postural contol and coordination things. Here is a sensory integration site: http://home.earthlink.net/~sensoryint/ One of the things the OT has my son doing is the <don’t know what you call it
walk, where we hold his feet, and he walks on his hands … it develops those back muscles. They also have a scooter board, and have him move from one fun activity to the other on this board, so that he is developing his back muscles. Also the crab walk, and a few others. He LOVES his time with the OT and views it as fun play rather than therapy. When he walks, it looks like none of his joints are connected … it’s really quite cute and whimsical now, but won’t be a few years from now, so I’m glad they caught it. The OT mentioned that a public school screening never would have picked up these issues in my son, so I’m glad Fangbasher, Mollie, and others alerted me and I paid for his first evaluation. He qualifies for OT just based on his fine motor coordination. Maybe he’ll never have good handwriting, but that’s the way you can get the public school to provide OT, where they actually can work on many things. Good luck, and I hope you’re having a wonderful Christmas. God Bless, BB2
Response:
- Hide quoted text — Show quoted text -
Well, we’re home again. 3 hours after we set out on our visit, I’m unsure how much ground we really gained. Dr. Blue went over (however briefly) my daughter’s history, and ran the standard gamut of "coordination" tests. When we went back to her office, her response was, "I have to tell you, some of these things are psychological" (was she talking about the OCD?), and asked me what I perceived as the prevalent problems that we needed to treat. I told her the motor tics (since this involves the bladder problem, and causes recurrent infections, her attention problems (she can’t seem to remember, almost from one moment to the next sometimes, what she was doing), and her lack of impulse control. She has put her on Tegretol, starting with 100mg at night, and working up to 600mg (two tabs at each meal) by the end of January.
Find out what type of expertise this neurologist has. You can ask for their resume(cirriculum vitae). This will show the doctor’s expertise. this will show the papers the doctor wrote, speaches in expert areas, work he/she has done with specialized patinets. If He/she shows no expertise with neurotransmittor disorders such as Parkisons, Huningtons, Distonia, and TS, then switch to a better neurologist. You can also ask this doctor what experience that he/she has had with TS. Ask if they have read or are familiar with some key books such as "TS and Human Behavior" and "the Guide to the Diagnosis and Treatment of TS" Your local or national TS association can help you get these books. Read them. Become informed. If you cannot get a straight answer from the neurologist, go to another one. Contact the NIMH. They can tell you of the Neurologists in your area that have trained with them. My doctor, Dr. Richard Suddath, trained there. Get a good neuropsychologist who can help with the psychiatric problems that your daughter might have. Usually a good Neuropsychologist and a good Neuropsychiatrist will work together referring to each other so if you find one, the other will be just a referral away. I originally started with a bad neurologist. He was referred to me after seeing a bad psychiatrist. they were buddies and were incompitent. He initially gave me Haldol. I don’t tic in public and have only slight tics in private. I needed haldol like a extra hole in the head. All this bad professional help eventually made me smarter and led me too good professionals who were able to help me. I will say this. Learn everything you can about the disease. Become a professional. Don’t accept a doctors say so until you are fully informed about treatment. Get a PDR(Physician’s Desk Reference) Know about every drug and its side affects. If a drug has a bad side affect, talk with your neorologist and don’t be afraid to take your child off a medication. Remember, the best patient is an informed patient. Fred in denver – Hide quoted text — Show quoted text -
Several things bothered me about this doctor. First, when she was testing my daughter’s motor skills, and had her hopping, skipping, etc, she said "well, she seems very well coordinated", and I honestly believe that point is when she stopped taking me so seriously, and quite possibly where she decided that Tourette’s wasn’t indicated. My gut instinct is that is where I lost her. She didn’t ask about fine motor skills, but my husband mentioned that it is almost painful for my daughter to write, but she didn’t seem phased by the remark. Then she mentioned in her office that "she has done very well while she has been here". I could feel my eyes wanting to roll ALL the way to the back of my head. Especially since as soon as the nurse left the room, she started pinching her lip again. Just because she doesn’t SEE the tic behavior in the 15 minutes she was with her, does that mean I’m nuts?? And lastly, I think that her receptionist MUST have been exaggerating when she told me that Dr. Blue has dealt with "a lot" of TS patients. I somehow doubt that. She is a neurologist, but not a pediatric one. I have valued all of you and your advice so far, and I’m asking for it again. What are your opinions about this visit? Is this doctor taking me seriously, am I just being hypersensitive because this is so important? How about the Tegretol? BTW, her dx was "Tic disorder – unspecified". How frustrating. Lisa
Response:
First, when she was testing my daughter’s motor skills, and had her hopping, skipping, etc, she said "well, she seems very well coordinated", and I honestly believe that point is when she stopped taking me so seriously, and quite possibly where she decided that Tourette’s wasn’t indicated.
In Nov. of 96 after several visits with a psychologist, psychiatrist and therapist my son was diagnosed with tourettes, adhd and ocd. His tics are on the mild side, so he was put on ritalin, and visited the therapist every 2 week to help him learn to control his rages. In Nov. of 97 we took him to see a neurologist, because of possible seizures, and he felt that our son has a lot of the characteristics of tourettes, but would not classify him as having it, because he didn’t have the coordination problems, and told me he would have a lot more problems if he actually did have tourettes. After thinking about this for a few days we decided to leave his school records as they are, because the school adminastration and most of the teachers have been wonderful in working with my son. The one teacher I did discuss it with felt we should leave it as is, because he is already labeled and the more labels he has, the more services they have to give him. Can’t say enough good things about this teacher and my son has been fortunate to have her for math 2 years in a row
Response:
If there’s anything about her that makes her a keeper, can you go back and see her without your Dr. and tell her how you feel?
sorry … without your daughter, not Dr. …
Response:
In article <34A0177B.2BA8A…@swbell.net
, Lisa <lisaj…@swbell.net writes: Then she mentioned in her office that "she has done very
well while she has
been here". I could feel my eyes wanting
to roll ALL the way to the back of
my head. Especially
since as soon as the nurse left the room, she
started
pinching her lip again. Just because she doesn’t SEE the tic
behavior in the 15 minutes she was with her, does that
mean I’m nuts?? And
lastly, I think that her receptionist MUST have been
exaggerating when she
told me that Dr. Blue has dealt with
"a lot" of TS patients. I somehow doubt
that.
She is a neurologist, but not a pediatric one. I have valued all of
you and your advice so far, and I’m asking for
it again. What are your
opinions about this visit? Is this
doctor taking me seriously, am I just
being hypersensitive
because this is so important? How about the Tegretol?
BTW,
her dx was "Tic disorder – unspecified". How frustrating. Lisa, Doctors like the one you mention above really should give REFUNDS for shoddy services provided. I can’t understand why I can get refunds on most things except medical service. From my experience, all neurologists when you call and ask if they are well-versed in TS say "yes". Then you go to their office, ask questions and they say maybe, I don’t know, or tell you "no, that’s not TS" when your own good instincts tell you that it is. I finally realized that these neurologists really didn’t have a clue when I saw Joseph Jancovic at Baylor neurology in Houston. He was able to answer ANY question I had for him regarding TS and confirm what I knew to be TS related but just needed a doctor’s confirmation to make myself feel certain about my own suspicions. Your doctor sounds like all she knows about TS is what she may have heard in passing in medical school (or even just heard on the Maury Povich show). I mean, if a doc hasn’t intensively studied a condition they can say they know about it and can treat it because they are doctors and there was a chapter on it in med school. I work in public health and know that doctors make mistakes or commendably, ask us for advice for treating everyday things like syphilis and gonorrhea (well, maybe not so everyday for everybody). So, if they don’t see these very common things regularly and can’t keep up with the comparatively simple treatment of them, how can we hope that they can have the extensive, rather complex knowledge of TS if they haven’t looked at it almost as a subspecialty of neurology. I do know they don’t like to say they don’t know anything about it. So, I guess look for information here on ast about neurologists in your area and see who might be able to help you better. A neurologist is a neurologist but one who knows about Tourette is one who has studied it almost exclusively of other neurologic conditions.
Several things bothered me about this doctor. First, when
she was testing
my daughter’s motor skills, and had her
hopping, skipping, etc, she said
"well, she seems very well
coordinated", and I honestly believe that point is
when she
stopped taking me so seriously, and quite possibly where she decided
that Tourette’s wasn’t indicated.
Also, the fact that your daughter looked well-coordinated to the doc shouldn’t even begin to rule out TS. I am pretty uncoordinated and when I learned I had TS thought that this was the explanation for it until I found out that people like Jim Eisenrich and the basketball player whose name I can’t remember are these incredible athletic individuals, meaning great hand-eye, body coordination. So, this lady should give you your money back and say "I really don’t know any more about this than anyone else." By the way, I always controlled my tics well as child when I was in the doctor’s office because I didn’t want anyone asking me what I was doing. Richard
Response:
Lisa and John, I know you had your hopes up and you were well prepared for this visit. What you got was the same sort of visit we had as our first visit with a neurologist. It is not uncommon. But what does that mean to you and where do you go from here? Well, we need to know and/or you need to define your needs and goals, because depending on what you’re targeting, you can begin to search for the right type of medical specialist to help you. Do you think your daughter needs medication? What school issues do you want/need to work on? Would you rather be referred to a psychiatrist? Do you even have any other options where you live? In other words, you can’t just chalk off this Dr. unless you know what your needs are. After seeing 6 different specialists, we came to the conclusion that the best single person we could work with was our son’s psychologist, so we have made sure to bring her up to speed on TS. She in turn has been able to help us find the right local psychiatrist in the event we eventually need medication … but her input as to whether medication was called for has been very helpful, as other professionals tend to listen more to each other than to the parents <g
. We did not have school issues that need
addressing, so we don’t care if we have a diagnosis. Do you need a diagnosis for school reasons? More specific comments below:
Well, we’re home again. 3 hours after we set out on our visit, I’m unsure how much ground we really gained.
**You’ve started … and we all started somewhere. You’ll eventually find the right person, if you realize that you might have to take the lead in insisting that your needs (once defined) are met and in helping to educate the professionals you choose to deal with. There are still painfully few qualified professionals in this field. Once you find a person you’re comfortable with, you might have to work to educate them.
Dr. Blue went over (however briefly) my daughter’s history, and ran the standard gamut of "coordination" tests.
***It’s best not to mention the Dr.’s name online — you never know. When we
went back to her office, her response was, "I have to tell you, some of these things are psychological" (was she talking about the OCD?), and asked me what I perceived as the prevalent problems that we needed to treat. I told her the motor tics (since this involves the bladder problem, and causes recurrent infections, her attention problems (she can’t seem to remember, almost from one moment to the next sometimes, what she was doing), and her lack of impulse control. She has put her on Tegretol, starting with 100mg at night, and working up to 600mg (two tabs at each meal) by the end of January.
***This doesn’t sound right … I’m not sure why, but I know others here will tell you. Tegretol is not a usual starting place, and I think it is useful for other issues. If you’re not sure about the medication, it’s your decision, and you don’t have to start her on it.
Several things bothered me about this doctor. First, when she was testing my daughter’s motor skills, and had her hopping, skipping, etc, she said "well, she seems very well coordinated",
***perhaps she was just giving you some good news !!! My son isn’t very well coordinated!! and I honestly believe that point is when she
stopped taking me so seriously, and quite possibly where she decided that Tourette’s wasn’t indicated.
***Because she put the diagnosis as tic disorder – unspecified doesn’t mean she didn’t believe it was TS. She could either be one of the many Dr.’s who won’t "stigmatize" a child with a proper diagnosis, or one of those who thinks "she" has to be the one to see the symptoms for a full year. My gut instinct
is that is where I lost her. She didn’t ask about fine motor skills, but my husband mentioned that it is almost painful for my daughter to write, but she didn’t seem phased by the remark.
***Is this important enough that your daughter should be receiving occupational therapy provided by the school or have some accomodations made for her at school? If so, you have to insist that it be looked into.
Then she mentioned in her office that "she has done very well while she has been here". I could feel my eyes wanting to roll ALL the way to the back of my head.
***At least she was pleasant !! (not always the case). That’s the point where you have to educate her as to how she is when she’s not meeting a new Dr. Especially
since as soon as the nurse left the room, she started pinching her lip again. Just because she doesn’t SEE the tic behavior in the 15 minutes she was with her, does that mean I’m nuts??
***Did the Dr. make you feel that way? Then, you might not be able to deal with her if the going gets rough with medication decisions. You have to be comfortable with her, even if she’s not as up to speed on TS as you’d like. Once you have a diagnosis, your needs have to be divided into the realm of medication and psychological. The psychological and/or behavioral issues are not her area, but if you can’t fine tune and make medication decisions with this Dr., she’s not right for you.
And lastly, I think that her receptionist MUST have been exaggerating when she told me that Dr. Blue has dealt with "a lot" of TS patients. I somehow doubt that.
***Can you call and ask for a specific number??
She is a neurologist, but not a pediatric one. I have valued all of you and your advice so far, and I’m asking for it again. What are your opinions about this visit? Is this doctor taking me seriously, am I just being hypersensitive because this is so important? How about the Tegretol? BTW, her dx was "Tic disorder – unspecified". How frustrating. Lisa
***I’m worried about the tegretol as the first drug. I wouldn’t judge the Dr. too harshly based only on what you said, because that’s all that’s available in some cases. Bottom line is how comfortable you are with her to pin her down on the hard questions that you’re asking here. If not, keep looking. If there’s anything about her that makes her a keeper, can you go back and see her without your Dr. and tell her how you feel? It’s not easy, but it has to be done. My 2 cents is don’t start the medication if you’re not comfortable, but give the visit a few days to sink in to see if you really believe that you can or can’t work with this Dr. And have a good holiday !!! Cheers, BB2
Response:
Well, we’re home again. 3 hours after we set out on our visit, I’m unsure how much ground we really gained. Dr. Blue went over (however briefly) my daughter’s history, and ran the standard gamut of "coordination" tests. When we went back to her office, her response was, "I have to tell you, some of these things are psychological" (was she talking about the OCD?), and asked me what I perceived as the prevalent problems that we needed to treat. I told her the motor tics (since this involves the bladder problem, and causes recurrent infections, her attention problems (she can’t seem to remember, almost from one moment to the next sometimes, what she was doing), and her lack of impulse control. She has put her on Tegretol, starting with 100mg at night, and working up to 600mg (two tabs at each meal) by the end of January. Several things bothered me about this doctor. First, when she was testing my daughter’s motor skills, and had her hopping, skipping, etc, she said "well, she seems very well coordinated", and I honestly believe that point is when she stopped taking me so seriously, and quite possibly where she decided that Tourette’s wasn’t indicated. My gut instinct is that is where I lost her. She didn’t ask about fine motor skills, but my husband mentioned that it is almost painful for my daughter to write, but she didn’t seem phased by the remark. Then she mentioned in her office that "she has done very well while she has been here". I could feel my eyes wanting to roll ALL the way to the back of my head. Especially since as soon as the nurse left the room, she started pinching her lip again. Just because she doesn’t SEE the tic behavior in the 15 minutes she was with her, does that mean I’m nuts?? And lastly, I think that her receptionist MUST have been exaggerating when she told me that Dr. Blue has dealt with "a lot" of TS patients. I somehow doubt that. She is a neurologist, but not a pediatric one. I have valued all of you and your advice so far, and I’m asking for it again. What are your opinions about this visit? Is this doctor taking me seriously, am I just being hypersensitive because this is so important? How about the Tegretol? BTW, her dx was "Tic disorder – unspecified". How frustrating. Lisa
Response:
Lisa, Hang in there girl!! I was in the same kind of situation awhile back and you have got to put your foot down with these doctors!!! Yes, my son behaved the same way in the office(no tics at all) and then they look at you like you are crazy or something!! I know that feeling. All I can suggest is to copy some of the things you find on here and from the web and take them with you to your next visit and demand answers!! Sometimes, you have to get nasty or find another doctor who seems interested and not just in a hurry to collect from insurance. You’re her mother and somewhere I read that most TS patients are diagnosed by parents and brought to the attention of the doctor!!! Go figure! You are not the one’s who is crazy!!! You know which behaviors are the "norm" for the age group of your daughter and what isn’t. Hang in there and God Bless! I went through the same thing——an unspecified tic disorder!!! Until my ex was diagnosed with TS then the diagnose changed!! I wanted more than a tic disorder!!! GOOD LUCK!
Response:
Lisa wrote,
What are your opinions about this visit? Is this doctor taking me seriously, am I just being hypersensitive because this is so important? How about the Tegretol? BTW, her dx was "Tic disorder – unspecified". How frustrating.
I understand how you feel. It is extremely important; she’s your baby. I don’t think you’re being hypersensitive; it doesn’t seem as though the neurologist made a conclusive diagnosis and I’m surprised he prescribed something without getting more history or refering you to a psychiatrist to discuss some of the issues that he felt were pychological. He seemed abit hastey. I was in your place two weeks ago, wondering whether the neurologist would "see" everything that Andrew has had trouble with lately, especially since Andrew was actually calm that day, and his blinking wasn’t giving him much trouble, as it had the previous day. Andrew did well with his coordination tests also, but the neurologist took extensive notes of the history of the tics and OCD symptoms and in turn refered us to a psychiatrist who could deal with this type of behavior along with prescribing something for the TS. I had to go through the history all over again in an hour session and then Andrew alone spoke with the psychiatrist another day for an hour, but we were glad to, because it was in Andrew’s best interest to work with someone that could offer the best treatment for his specifics. So many conditions overlap, and sometimes treatment for one neurological disorder will help other symptoms, such as treating anxiety often reduces the tics for kids with TS. We parents all share alot of similar problems with our children, but each child is extremely different and warrants treatment designed especially for him or her. Don’t feel badly asking the neurologist you visited if he could refer you to a psychiatrist to discuss some of the other issues. You might even think of getting a second opinion from a different neurologist, but Ithink a psychiatrist might be your best bet to obtain more information about your daughter’s tic behaviors and OCD symptoms and her difficulty remembering things. You still have some questions left unresolved, and you have the right to understand the reasons for your daughter’s problems and have some options to choose from. Good Luck!
Response:
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