![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 25. This is the beginning of the thread.
Posted by McSweeney on October 6, 2002, at 5:46:09
When my son was 7 mo. old he started scrunching his face up and "flinging" his arms, at first we thought it was cute and thought it was just a cute thing after he continued doing this for a few months I began to worry and took him to the doctor and he said it was just a habit to ignore it and it would go away. We tried to "ignore" it but by the time he was 14 months old he was doing this almost constantly and for up to 30 minutes at a time. I once again took him to the doctorand he again said it was nothing, I had thot it was tourettes syndrome, doc said couldn't be that because my son was too smart, he was talking plain 6 word sentences, recited abc's, counted to 20 ect... so again we tried to ignore it, the doc left town and we all had to get new doctors, I was at my new doctors and I had my son with me and he started doing his "no no" as we call it, and I asked her if she thot it was tourettes and she said no not tourettes but its definately a neurological disorder and suggested I take him to a ped.neurologist. so I did.. he said he thot maybe it was seizures and ran an eeg and video taped him. I tried for almost 3 weeks to get the results, but during this time my babysitter had my son in the doctors office with her and that doctor saw my son doing his "no no" and she demanded (not very nicely either) to know who my son's parents were and why I hadn't taken him to a neurologist sooner in his life because he was having seizures and anyone could tell that and I was a neglectful mother and should be turned in for child neglect. well after 3 weeks the neurologists receptionist told me that the results were in but the doctor would need to speak to me.. another 6 days go by with me trying to get hold of him and waiting for him to phone. On the sixth day I get a different receptionist who was very hateful on the phone and says to me, "the test were negative, he is fine" so I ask what am I suppose to do now? she said "nothing," so I ask to speak to the neurologist and she says " He isn't available if you have anymore concerns you can make an appointment" and hung up. I don't know where to go from here. What my son does is stares straight ahead, his face gets very contorted and he raises his arms in the air and rubs his fingers together very roughly and makes a "hohohohohoho" sound like a whisper..sometimes if he is standing he will also jump up and down during this time and if sitting sometimes his legs will move back and forth on the floor. sometimes it lasts for only a few seconds up to 30 minutes at a time and by then he is drentched in sweat and his face is beet red. Does anyone have any ideas of what it could be? or maybe another professional I should seek? Please help me, Im baffled at what to do.. oh he can imitated his "no no" but if I ask him to show someone what he does its the same movements basically but the intensity of it isn't there, which makes me believe that even though he knows what he does its something that he cannot control. thanks
Posted by Phil on October 6, 2002, at 9:28:01
In reply to My baby has a tick, posted by McSweeney on October 6, 2002, at 5:46:09
http://familyfun.go.com/raisingkids/child/health/childhealth/dony89enc_tic/
I don't have kids but after reading your post, I got curious and have been searching the net for an hour. Jeez, there's lot's of info on kids.
You've probably already read similar articles to the link above but it was the closest I could come.
One thing I would suggest is getting an appt with that neurologist and kick him in a painful spot.
I would tell him how rude the staff was and ask politely for his observations, gut instinct, whatever.
I would also tell him he could pay for the appt.
Really.Good luck to you. I hope you can find doctors that care!
Posted by Ginjoint on October 6, 2002, at 11:26:51
In reply to My baby has a tick, posted by McSweeney on October 6, 2002, at 5:46:09
Good Lord...I can't believe how your concerns (TOTALLY justified) have been blown off by your doctors. I would see another neurologist ASAP -- he or she can probably bypass a snot-nosed receptionist and get the test results from the first clown/neurologist, and then proceed accordingly. You deserve some respect and your son needs to be treated. Let us know what happens, O.K.?
Ginjoint
Ginjoint
Posted by Roman on October 6, 2002, at 14:51:06
In reply to My baby has a tick, posted by McSweeney on October 6, 2002, at 5:46:09
Posted by oracle on October 6, 2002, at 16:56:43
In reply to Re: My baby has a tic, posted by Ginjoint on October 6, 2002, at 11:26:51
Just because the tests are negative does not mean there is not a problem. This is often why doc's don't like to give results over the phone. You need to make another appt. to discuss what is next.
Posted by McSweeney on October 7, 2002, at 0:38:42
In reply to Re: My baby has a tic, posted by oracle on October 6, 2002, at 16:56:43
Thank you to everyone who has posted already.. just reading the posts makes me feel as though I have support on my side for once. You cannot believe how little support I have received from my family, they all think I am way too over protective and they think his "tic" looks cute and I should just leave it alone so thanks again for the support and Phil thank you for the link, yes I have searched the net for over a year now but hadn't run across that one yet.. and no he has not had a MRI or a CT scan, the neurologist said if he concluded that it was seizures they would do a CT scan to rule out a tumor.. I don't know how to get just a CT scan without the neurologist referal. I spoke with my family dr. and she said I should make another appointment with this neurologist and hear what he has to say instead of the receptionist. I am trying to find another ped. neurologist in another town but will also try to get back in to see the original one also. I will keep everyone posted on the outcome.THANKS AGAIN SO MUCH..
Posted by LyndaK on October 7, 2002, at 1:03:41
In reply to My baby has a tick, posted by McSweeney on October 6, 2002, at 5:46:09
No one should ever have go through what you are going through -- particularly in the way you are being treated by the medical professionals and their staff -- but, unfortunately, I've heard similar stories. I work with children with physical disabilities, many with neurological impairment.
You can't be derailed by a rude receptionist. Your child needs you to find someone who will listen and help you get to the bottom of this. Make an appointment with the neurologist who ordered the EEG. If he gives you the same answer as the rude receptionist, find another neurologist. It would probably be good for you to make a videotape of the episode to take to any new appointments. Go back to your pediatrician and let him/her know the difficulty you are having. Put your "mother bear" armor on and KEEP TRYING. O.K.?
Lynda
Posted by Alara on October 7, 2002, at 4:20:41
In reply to Re: My baby has a tick » McSweeney, posted by LyndaK on October 7, 2002, at 1:03:41
"Put your "mother bear" armor on and KEEP TRYING. O.K.?"
LyndaLynda is right. You need to seek second opinions, third opinions, fourth opinions, and so on until you get to the bottom of this. This is your child and you know that something is not right.
As an infant, I had problems with walking and a couple of doctors told my parents that there was NOTHING wrong with me. Understandably, my parents assumed that the doctors were right. Yet they had this niggling feeling that something was not quite right...
Finally, at the age of 2 years and 3 months, a specialist diagnosed me with a congenital dislocated hip. Surgery followed and I learned to walk. I'm just so sorry that my parents had to endure so much in the meantime. Don't let this kind of thing happen to you. You don't need the stress of constant worrying.All the best,
Alara
Posted by maririp on October 7, 2002, at 12:02:15
In reply to My baby has a tick, posted by McSweeney on October 6, 2002, at 5:46:09
McSweeney ..tourettes or tic disorder...my son has mild tic disorder a form of tourettes..this started at about age 6 or thats when i first noticed it. He would smell everything..smell his fingers..touch things..then he went through phases of voice tics..standing and squatting..sticking his tongue out..he too is highly intelligent. I did try meds with him around age 11 but they dragged him down. he is 13 now and he has out grown most of the tics. I hardly notice any tics..tho children with these disorders tend to be ocd in behavor and thoughts and he goes through that from time to time..washing his hands allot..questioning things over and over..the good thing about tic disorder most kids can out grow it in their teens.There are allot of web sites out there on tourettes and also chat rooms...good luck.
Posted by maririp on October 7, 2002, at 12:11:43
In reply to My baby has a tick, posted by McSweeney on October 6, 2002, at 5:46:09
Mccsweeney....just to add to what i previous said..It made me laugh when the doctors said your son couldnt have tourettes because he was too smart...in the research i have done..most people with tourettes are highly intelligent as is my son. find yourself another doctor. I have experience with tourettes and tic disorder..with my own child..it can be heart breaking..and there are doctors out there that can advise you as well as support web sites like this one and please check out this site as well...http://pediatricneurology.com/tics.htm
Posted by McSweeney on October 7, 2002, at 18:47:02
In reply to Re: My baby has a tick, posted by maririp on October 7, 2002, at 12:11:43
> Mccsweeney....just to add to what i previous said..It made me laugh when the doctors said your son couldnt have tourettes because he was too smart...in the research i have done..most people with tourettes are highly intelligent as is my son. find yourself another doctor. I have experience with tourettes and tic disorder..with my own child..it can be heart breaking..and there are doctors out there that can advise you as well as support web sites like this one and please check out this site as well...http://pediatricneurology.com/tics.htm
Thanks for the link. I did originally contact the tourettes foundation and sent them an email asking about this, they replied saying they had never had a child under the age of 2 diagnosed with tourettes, and they only knew of like 1 case where the child was 2 yrs old, they also said that its usually around 6 yrs old that its diagnosed. I knew when the doctor said he was too smart to have tourettes that he didn't know what he was talking about as I had done tons of research on the matter. I do kind of feel like I am between a rock and a hard spot because I want to home school him but I don't want him to ever think that I kept him home because of this tic that he has.. anyways, thanks.. I'll keep you posted.
Posted by maririp on October 7, 2002, at 19:53:01
In reply to Re: My baby has a tick, posted by McSweeney on October 7, 2002, at 18:47:02
hi again..I agree he sure seems young to show the signs of tourettes because i noticed my son's tics at about age 6-7..he made those hohoohohho sounds as well...doesnt mean tho it could not be it..From what you have said to me it sounds like the tic disorder..and he can out grow it..hang in there and find someone who can help you. Home schooling can be wonderful for kids if you have the time. keep me posted..Im here for support!
Posted by bookgurl99 on October 8, 2002, at 0:21:22
In reply to Re: My baby has a tick, posted by McSweeney on October 7, 2002, at 18:47:02
I thought Tourette's too, though who knows. It may be a type of seizure -- which many children also grow out of.
If it is Tourette's, just thought I'd let you know that last year I lived with a 30something guy with Tourette's. He said that behavior had changed suddenly after an episode of severe fever as a child. He still has self-esteem issues related to it, but through the support of friends and a girlfriend has overcome that to win a scholarship to grad school at Carnegie Mellon. He moved off to school in August and I really miss him. :D
Good luck. I've been treated like a nut by neuros myself and just recently found relief. :D
Posted by Gracie2 on October 9, 2002, at 1:03:13
In reply to Re: My baby has a tick, posted by bookgurl99 on October 8, 2002, at 0:21:22
I'm in the medical profession and it upset me to hear that you've been treated in such a manner by doctors and their staff. Unfortunately, some very
experienced and competent doctors have lousy "bedside manners". However, this is no excuse for the doctor to not have talked to you personally about the test results on your son.
I would not return to that neurologist, but I would seek another opinion.To back up what everyone else said - I have a friend, a young woman with Tourettes', who is very intelligent. She's tearing through her pre-med courses in college with flying colors. She has a boyfriend, a job and her own apartment, and she lives a full life.
Don't give up hope - there are good and caring doctors out there.
-Gracie
Posted by maririp on October 9, 2002, at 7:27:22
In reply to Re: My baby has a tick, posted by Gracie2 on October 9, 2002, at 1:03:13
Gracie2..i agree with you..and as i posted earlier my son had the general tic disorder of tourettes..the docotor told me some out grow it in their teens. He and i were riding to the store last night and he said his tics were gone and there have been no signs of them in months. I know some aren't so lucky but they have gone on to lead very successful lives. my son was in the top 6% in the nation in state wide school testing and in gifted classes. Good luck to you and your friend.
Posted by shar on October 9, 2002, at 18:39:10
In reply to Re: My baby has a tick, posted by Gracie2 on October 9, 2002, at 1:03:13
I've never known anyone with tourette's only seen it portrayed on tv a couple of times and read about it in psych courses.
Does your friend have vocalizations (that was in the tv portrayals), and noticeable tics?
She must have amazing coping skills. How does she manage the crap that she must get from other people (and people in powerful positions, like admissions offices)?
Shar
Posted by shar on October 9, 2002, at 18:44:30
In reply to Re: My baby has a tick, posted by McSweeney on October 7, 2002, at 18:47:02
>I do kind of feel like I am between a rock and a hard spot because I want to home school him but I don't want him to ever think that I kept him home because of this tic that he has..
McS:
You will be able to convey to your son in hundreds of ways, well before he is school age, that he is just fine as is. In the face of that knowledge, he will understand (I believe) that his home schooling is for the reasons you give and not because he has a tic.Shar
Posted by maririp on October 9, 2002, at 20:14:56
In reply to Your friend » Gracie2, posted by shar on October 9, 2002, at 18:39:10
> I've never known anyone with tourette's only seen it portrayed on tv a couple of times and read about it in psych courses.
>
> Does your friend have vocalizations (that was in the tv portrayals), and noticeable tics?
>
> She must have amazing coping skills. How does she manage the crap that she must get from other people (and people in powerful positions, like admissions offices)?
>
> SharMy son has the general tic disorder of tourettes. It an awful thing for anyone to go through because people can be so cruel..they think you are retarded...they call you names make fun of you. Fortunately for my son he has out grown the tics now that he is 13. I have said in my previous posts that most people with tourettes are highly intelligent and has a great sense of humor. Love and support are the best things for everyone. I read the book called icy sparks about a girl growing up in tourettes it was a wonderful and humorous read through the eyes of this girl suffering and accepting tourettes.
Posted by Gracie2 on October 10, 2002, at 20:56:09
In reply to Your friend » Gracie2, posted by shar on October 9, 2002, at 18:39:10
Shar-
She must have amazing coping skills. She's a very gentle person, very pretty, with a wicked sense of humor. She does vocalize - usually she says
"f***", and at the same time her arm twitches. She does have medication to control the tics, but she says that it makes her tired and she doesn't like to take it.Apparently she can control the twitches to some degree, but it seems to take a lot of effort and concentration.
Some years ago, she was first hired at our office
as my assistant in X-Ray. I was introduced to her, I showed her around, and during that time I noticed nothing different about her. However, as soon as she was alone in the fileroom or darkroom, I could hear her say, "F***! F***!"
I walked up to one of the nurses and said, "Jeez,
I know this isn't the greatest place to work, but she burned out pretty quick!"
The nurse watched her for a minute and then told me, "I think she has Tourettes." I'd never heard of it, so the nurse explained it to me.Since that time, this little girl has been one of my heroes. Although her family is quite protective
and would have gladly shielded her from the outside world forever, she insists on being independent. As nerve-wracking as a new job or a new course in college must be for the rest of us,
I can't imagine the level of courage and grace that it must take for her to do the same. She's a wonder.
-Gracie
Posted by McSweeney on October 10, 2002, at 23:00:03
In reply to Re: Your friend - Shar, posted by Gracie2 on October 10, 2002, at 20:56:09
Shar..
Just hearing you talk about your friend makes me feel tons better, when I look at my little boy and watch him as he is in one of his episodes my heart BREAKS into a thousand pieces, I am a victim of horrible ridicule as a child and I just cry thinking that someone might make fun of him. I want to protect him from everything, he is truly the light of my life, I never dreamed I could love someone as much as I love my little guy. and in turn I never knew someone could love me as much as he does, my life is sooo complete since he came along, but as I said earlier in a post I want to homeschool him but not because of the tic, I would of no matter what but it does kill me to think about other people staring, or making fun of him and I want to do things right, I don't know how though, maybe you could ask your friend what her parents did or didn't do to make her life better, you know she would surely know what could of made it better or how they did things to make it so that she was able to look the world in the face and make a life for herself.
Also, I phoned 10 neurologists today and most of them don't take my insurance and the others don't do pediatrics..sigh.. so my search will continue tomorrow.. I live in Arizona and in Tucson, the Tucson Medical Center doesn't take blue cross/blue shield insurance, strange huh? It's not like its a little doctors office in a little town.. :(
Lori
Posted by Gracie2 on October 11, 2002, at 0:23:08
In reply to Re: Your friend - Shar, posted by McSweeney on October 10, 2002, at 23:00:03
I think you're talking to me since you mentioned my friend with Tourettes.
Since your son has not been officially diagnosed with Tourettes, I would not zero in on that syndrome and exclude all else. Although it's certainly possible that you, a layman, could spot
the symptoms that a professional missed in tests,
it may also be a case of "too much information" on your part, leading you to panic and misdiagnose.I would like to tell you about a dramatic example.
I used to work at a well-known childrens' hospital
that specialized in orthopedic surgery. It was also a "teaching hospital" where residents performed orthopedic surgery under the supervision of a trained surgeon. Many of the children who underwent surgery of the hips suffered from severe cerebral palsy - they would never walk, surgery or no surgery.
A long-time employee of the hospital used to tell anyone who would listen that these children with CP would endure hip surgery only because the residents needed the practice...why else do surgery on a patient that would never walk? I came to believe it, and so did most of the other hospital employees.
After some years I developed a close relationship with a resident doctor (normally they were so busy and harried that you could never talk to them at any length), and I brought up the sinister fact that these poor children were being operated on because the residents needed the practice. It was obvious. Hip surgery on a permanently non-ambulatory child was unnecessary,
anybody could see that.The resident was shocked. Of course it was necessary, he said. In the first place, these children with severe cerebral palsy suffered from
limbs that were so tightly drawn, it was difficult to cleanse their genitals. More importantly, it was uncomfortable or even painful
for them to sit upright, and hip surgery provided
mobility and made it possible for them sit and travel in a wheelchair without pain. Without surgery, they would be permanently bedridden.I felt so stupid - I had honestly believed that
there couldn't be any reason to do hip surgery on a non-ambulatory patient. I didn't have enough information.So please do not focus on a single diagnosis without complete information. I understand how you feel - I love my own son more than life itself, and your willingness to home-school your
son is a great act of love. Still, you must be careful to not to smother him - then you open up a whole new can of pyschiatric worms.Watch him, love him, but don't seclude him. Make sure he interacts with other children. Guide him as he grows older, listen to him when he talks, let him know that he's loved and wanted. Most of all, try to quit worrying and enjoy him. They're grown and gone before you know it.
-Gracie
P.S. I love you, Jake.
Posted by McSweeney on October 11, 2002, at 1:54:56
In reply to Re: Your friend , posted by Gracie2 on October 11, 2002, at 0:23:08
Gracie..
wow you must be a night owl too.. you posted back really fast. I think I have led you to think that I think my son has tourettes, I don't think he does because after months of research on it he doesnt really fit the criteria for it. I think it was probably when the national tourettes foundation emailed me back saying that a child under 2 has never been diagnosed with tourettes. I am almost positive its not tourettes but it is a tic of some sort. when I asked for information on how your friends family helped or hindered her it was dealing with the "tics".. The first neurologist that I went too said that alot of children have "tics" they don't know anything about them, in why they occur and he said they dont help or hinder them in anyway and they will disappear by the age of 5..but again that was the same neurologist who would'nt even speak to me again after he ran his tests.. I just hope that I can find a good doctor that will give me some straight up answers. When my son is doing this and its lasting more than 10 minutes or so he starts doing like a grunt, reminds me of how I sound when I am in pain..he will be bright red and full of sweat by the time it subsides. The more I see him do this the madder I get at this neurologist who is too busy to speak to me on the phone, but mind you I can make an appointment and pay to speak to him.. sad world we live in sometimes..
Lori
Posted by maririp on October 11, 2002, at 7:53:45
In reply to Re: Your friend , posted by McSweeney on October 11, 2002, at 1:54:56
> Gracie..
> wow you must be a night owl too.. you posted back really fast. I think I have led you to think that I think my son has tourettes, I don't think he does because after months of research on it he doesnt really fit the criteria for it. I think it was probably when the national tourettes foundation emailed me back saying that a child under 2 has never been diagnosed with tourettes. I am almost positive its not tourettes but it is a tic of some sort. when I asked for information on how your friends family
helped or hindered her it was dealing with the "tics".. The first neurologist that I went too said that alot of children have "tics" they don't know anything about them, in why they occur and he said they dont help or hinder them in anyway and they will disappear by the age of 5..but again that was the same neurologist who would'nt even speak to me again after he ran his tests.. I just hope that I can find a good doctor that will give me some straight up answers. When my son is doing this and its lasting more than 10 minutes or so he starts doing like a grunt, reminds me of how I sound when I am in pain..he will be bright red and full of sweat by the time it subsides. The more I see him do this the madder I get at this neurologist who is too busy to speak to me on the phone, but mind you I can make an appointment and pay to speak to him.. sad world we live in sometimes..
> LoriIt would be more helpful to you and give you peace of mind when you can find a doctor who is willing to look at your son. My son had the general tic disorder..a form of tourettes. He out grew it as he turned 13, this is not to say it wont come back. I have followed your posts and my son had some of the same symptoms as you are descrbing in your son and it was general tic disorder..the hohohohho sounds..the grunting..etc..it is heart breaking..but you will feel better when someone is willing to look at your child and show you ways to work with him.
Good luck ...mari
Posted by Natasha Pearson on April 1, 2004, at 14:18:54
In reply to Re: My baby has a tick, posted by McSweeney on October 7, 2002, at 18:47:02
My son has had exhibited muscle tensing since he was about six months old. At that time he would extend both arms out to the side and do a bear down sort of motion sometimes a hundred times a day sometimes once a day. It got worse when he was tired or stressed in any way. He had terrible acid reflux,and the ped. neurologist said then that it was probably due to the reflux. He outgrew the reflux when he was 11 months old. He still was doing the tensing movements.
Now he is 2 1/2 and the movements have changed. He now tensing and opens his mouth (facial grimacing), still tensing his entire body, jumps up and down all day long, and has starting sniffing between words sometimes (this last behavior is new and he does has a slight cold). He repeats things a lot and changes voice tone during these tensing movements, but no other vocal tics.I took him back to the same ped. neurologist at Duke Hospital. He called him a little professor without any of the social issues whatever that really means and called the movements motor stereotypes. He said that because he developed these movements so young, he doesn't think of Tourettes. He thinks he will outgrow these movements. He is extremely bright with a large vocabulary for his age and extremely social. However he can't control these movements and I worry about social implications. They seem to be getting worse. In preschool other people (kids and parents) ask why he opens his mouth like that...etc. Not mean really, but I can just feel that this will be a sense of emabarrassment for all of us. I also notice he has started suppressing these a little out in public, and doing them at home a lot more. Could this be Tourettes even though he started the tics so young? How should I handle them? I am an extremely loving mother, but they make me crazy. Can I help him control them in some way or teach him to replace the behaviors with other behaviors? Help!
Posted by noa on April 1, 2004, at 18:52:58
In reply to Re: My baby has a tick....Could this be Tourettes?, posted by Natasha Pearson on April 1, 2004, at 14:18:54
Have you confirmed that what this doc said about it not being Tourettes because it started so young? At the following web site, http://www.wemove.org/ts/ts_epi.html
it says that "TS usually becomes apparent in children between ages 2 to 15, with approximately 50% of patients affected by age 7." USUALLY between 2 and 15, and that is when it usually becomes apparent---it does not say that it never starts before the age of 2, and I bet that in lots of cases there can be signs before that but they just aren't as apparent at first.Also, the Tourette Syndrome Association site is good for lots of info, including the DSM definitions, etc. and also this organization is a good support network: http://www.tsa-usa.org/
I think it could help to find other parents in your area who have children with tics--for the support and for information about resources, including names of other doctors to see.
Good luck.
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