Appt today with the Ped Neuro for Nic
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| Tue, 05-15-2007 - 12:56am |
This is about my littlest guy Nicholas who has Tourettes. It was a very frustrating appt to say the least. Here goes...
I should of known when he first said "Why did your doc refer you and your son to me?" (kinda like I don't deal with Tourettes)
It was obvious I knew more info about Tourettes than he did.
He said he treats more stroke and brain injury patients.
Anyway I knew my son was going to be nervous and knew he would tic more, but I didn't expect the hyper activity. He was WILD! Uncontrollable. He ticced, but since we had the hyper attached to it, I really don't think the doc saw everything as tics. He kept saying this is behavior he can control... but then included a dx of ADHD (so really, if he's adhd, then he really can't control this!!! UGH)
He did see some tics, the face grimaces, the licking ect.... My son did the coprolia, but the doc didn't think he was ticcing grrrrrr. I guess because their wasn't a rapid tone to it. Geez, you don't have to have a rapid tone to it to make it a tic. My bil I just found out has coporolia and has been on Risperadal for the last 4 years. I asked my sister, did it always come out in a rapid tone? She said no, sometimes he would just say it.
At one point I had to get forceful and say I'm tired of docs not listening to me (had this problem with my older one) as I am his mother and know him best. Its almost like he thinks I can snap my fingers and have my son tic the most classic tics in front of him like nothing. Thats why I had to get forceful and insist he was ticcing at home. I gave many examples.
Anyway, he dx'd him with a tic disorder (though he said it is tourettes with coprolia) but said lets try to get him in control with some meds first and then I can concentrate on the tics. His final dx is... Tic Disorder, ADHD, and OCD Tendencies....
He prescibed a anti depressant (I think it starts with a L, but its downstairs and I don't want to go get it right now), told me to go back to my ped and get him on Adderall.
I made friends with a woman in town and her two boys have Tourettes. In fact one of her son's was on a HBO Documentary "I have Tourettes but Tourettes doesn't have me". I ranted over the phone with her lol. She's so nice! Understood it all and said yes I have been thru this. I then asked her for her docs name and number and I intend to go to someone who truley understands tourettes. I don't feel comfortable driving almost 90 min away, getting prescriptions from some doc who doesn't understand anything about tourettes....
BTW Chris has an appt with him too at the end of the month. He said he couldn't help him, and he needed a different kind of doctor for the Aspergers.... I cancelled the appt.
I hate this. But at least I have something I can take to the school tomorrow. But still it was a horrible appt and I felt like I was the worst mom in the world cuz I couldn't "Control my son" and even got a dirty look from a lady on the staff.
Why is this so hard?????
Lainie

Oh Lainie, I am so sorry you're having to jump through hoops just to get your boys the help they need. I understand the part about traveling to find a decent doctor. We've been doing it for years now...and we live in what's supposed to be a fairly large, medically advanced city!
I don't know squat about Tourettes, but I know you well enough to trust that you've done your research and are absolutely doing the right thing by following your gut and pushing the issue.
Hugs to you, dear friend-
Amy
Not much of a neuro if he doesn't know much about tourettes. You need someone who specializes in this. It's great that you have that other Mom to bounce off of. (I've seen that documentary too, on Oprah as well right?)
How long did it take for this guy to dx Nic with all of these disorders, 20 mins....30 mins??? Ugh they love to throw the adhd dx around; that was all Liam ever saw until last Fall. Why did he prescribe an anti depressant? Is Nic showing signs of depression? I thought it was the tics and btw: the hyperactivity and OCD behaviors are often connected to tourettes patiants. (Ask my friend, her son's ocd tendancies get worse with fear and anxiety). There's a book out there called children in the syndrome mix or something to that effcet, I'll look it up after this. But it discusses how ASD/tourettes adhd , ocd etc are ofetn connected.
Keep looking, and trsut your instincts,
Dee
I am betting the anti-d is Luvox because it is a classic one perscribed for OCD type stuff. It is even I think approved for kids and OCD. That is likely why they did that.
Lainie,
You have no luck with docs do you. Why does a ped neuro not know about tourettes or Aspergers? Both are neurological and that is what I have gone too. In fact when Cait first started with tics the docs sent me to one first off. I thought Cait had something wrong with her eyes and the ped picked up it was tics then realized I hadn't been to a neuro since moving to Cali so wanted us to see one.
Did this other lady give you some good names in your area? Even though this stuff is neurological there are some neuro's in our area I don't like and are clueless. I am finding there are many different specialty areas and some are clueless about what we are dealing with. Our own neuro actually specializes in epilepsy but she has a sub specialty in autism/aspergers and is known in the autism community here.
One way I did find the ones with the right specialities was through an online search. If I could find through thier profile at the hospital or such some of the papers they had written it was often a good indicator to what kinds of things they were interested in.
Renee
Thank you for your words of encouragement and understanding. Even tho this isn't a Tourettes board, I knew I would get the help and support I need with him.
Hi Dee Sweetie,
Yep he dx'd him immediatly. It was one of the first things that came out of his mouth after he questioned why my ped sent us to him. I was kinda shocked. I mean I knew in my gut that there was a possibility of him having ADHD, because of the lack of impulse control I have seen with him, but I didn't expect him to blurt it out after watching him for 5-10 min. I mean really..... 5-10 min!
I tried to explain it was the environment that was making him so hyper. He was scared and couldn't cope. I said this isn't ever a problem in school, its the repetitious behaviors that are getting in the way at school. Hyperness... no. He said really?
And sure enough, once we left and got in the car to go home, he was back to his normal calm self and in control.
He also asked me if Nic had ever had strep. I said no. He said well he will get it no doubt because of how much his hands are in his mouth. He said strep can also trigger these type of behaviors. I said "Oh you mean Pandas" He kinda looked at me, hesitated (must of realized that I am a parent that has some type of knowledge DUH), and said Yea, like Pandas.
I'll go on Amazon and look for that book. I'm starting my own little library here lol. I also am gonna get the explosive child book as I have heard you guys mention that is really good.
Thanks Dee! :)
Hi Renee,\
Yea I think he prescribed the luvox for OCD. And for the life of me I just don't understand why he can't help me with the Tourettes or the Aspergers!!!
A few other parents of kids with Tourettes said the same thing tho, that they had Neuro's look at their childs tics and say "Oh thats on purpose, thats for attention blah blah blah..." I got some of that yesterday except what made him believe that there were some tics going on is the face grimaces and the licking of his own leg is what did it.
My god does he think my son was banging his head on the wall over and over again on purpose???!!! Cuz thats what my son was doing. KNocking on walls, banging his head, stepping on the lever over and over again that opened and shut the garbage can in the room. All of this along with the Hyper-Activity.
He could see the mark on my son's lips that showed he had been licking them for several months now (he recently stopped and its healing, but you can see it's not quite all healed up yet because he has a dark shadow around his mouth), so he saw that.
ARGH I just hate the fact that I feel I have more knowledge as a mother than a Doctor that has gone to school for 8 plus years.
Anyway, yes she told me of her's and said he was extremely knowledgable about tourettes and said he see's kids with all kinds of problems and that no he wasn't going to judge me or tell me I need to discpline my child (thats how I felt yesterday, that he just thought I didn't discipline him).
I will search online for him today. I didn't realize about the searching and finding there specialties and such. Good idea!
Thanks for letting me vent here guys. I knew you would all understand and give me some help, when I'm feeling helpless. I'm feeling better already.
Editited to add..... He also wants him to start on a stimulant with my ped, but I'm a little leary as my friend told me that sometimes that can make the tics stronger, which is not what I want to do. But then hey, if he really does have ADHD, then it will help him. God I feel like my poor kid is just a Guinie Pig ya know?
Lainie
((((((Lainie)))))))
Sorry to chime in so late. I've been having probems with this PC.
In agree that this guy
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Lainie, here's the amazon link.
http://www.amazon.com/Kids-Syndrome-Aspergers-Tourettes-Bipolar/dp/1843108119/ref=sr_1_13/103-1206023-3477422?ie=UTF8&s=books&qid=1179272079&sr=8-13
Dee
I know I have traveled for the doctors I need and came close again. My only issue is that my current health insuranceis very limiting in where I can go. I am only allowed to see certain doctors who are affilated with certain hospitals. So far I have been lucky but I almost got screwed with the Developmental ped. And the sad part is that she is the only one listed in my book so they will not pay if i go out of network. This happened to me when Josh was 7 and broke his leg badly. I needed to go to a certain Ortho doctor who was consulting with the ortho who did the work on Josh and the insurance would not pay for it.
We also almost had to do battle for the orthopedist who handles Josh's clubfoot. I was given the impression that the docotor was dropping our insurance. And the worst part was nobody at the insurance company could tell me if any of the ortho's in the book dealt with clubfoot. In their eyes an orthopedist is an orthopedist.Fortunatley the doctor is still in the plan But I was ready to go to the insurance company's office and do major battle. It was going to be either you cover the needed doctors or the kid was now theirs. ASD, Clubfoot, undersized self and all.
Rina
hey Lainie!
I'm so sorry you have this to deal with on top of everything.