Hello friends,
Still don’t have a working computer, so I’m here at the local library, and time is a concern, you only get one hour, so I’ll try to be brief…those who know me know how hard that is for me… and I haven’t been here for awhile, for the same reason.
My youngest daughter, age 10 1/2 now - NOT her 12 1/2 year-old sister, the dancer who is, by the way, blossoming quite nicely in what she calls “the greatest city in the world”, but struggles with some depression - no, it’s the little one, the gifted child, the one who scores off the charts on standardized tests, the one I never had to worry about, except for her painful shyness. She described to me about 2 months ago, out of the blue, something that she thought was “very wrong” with her - and without any leading from me, I shut my mouth- described, practically out of a textbook, the heartwrenching symptoms of panic. I myself get them, and have since I was very young, so I knew immediately what she was getting to, but let her tell it all anyway. She had been holding this in for at least a year, said she tried to tell her sister once, but of course, her sister had no idea what she was talking about, and changed the subject. She gets at least 3 major panic attacks a week, likely more. And that’s a lot, for any of you who do not know how absolutely terrifying a panic attack is, especially when you don’t know what’s going on.
I have discussed this at great length with her school counselor, who has been trying to get me to have her see the school psychiatrist, but I’ve not signed the papers for that. It’s a private Catholic school, and I just don’t trust them, with good reason, from past experience at another school…and it just seems too incestuous, if you will, for the school to know too much of our business, if you can understand where I’m coming from.
But… I found my 10 year-old’s diary on the floor of the apartment the other day. I know, you are not supposed to invade their privacy, but I did, I read some of it, and I’m not at all guilty for it, in fact I’m SO GLAD I did. On one page, my daughter describes something that is “annoying” to her, something she “has to whisper, over and over again”, and how “annoying it is to have to do this all the time”. She even wrote down what she has to whisper…I read in horror, this long line, that goes on and on, of gibberish that makes no sense. I even read it backwards, tried to make sense of it to no avail. My first thought, when she says she “has” to do it? Some kind of obsessive compulsive thing. Then I thought OMG, Tourette’s?
I talked to her school counselor at great length again, on Thursday. She is great, by the way, but said herself right away that she isn’t a doctor, and would not presume to diagnose this. She told me my daughter needs a psychiatrist right away. I am so frightened and heartsick over this.
So… I spoke with a psych friend of mine I’ve known for years, and he said get her evaluated right away- but here’s what really scares me- he said she NEEDS meds immediately, to relieve the panic attacks, and that her compulsive whispering may stop then. He said this may be a coping mechanism for when she feels anxiety. He also said no child - or adult, for that matter - should be made to suffer panic attacks without medication, that will definitely stop them. He says what I brought up, that cognitive therapy may help, and does help some people (but it never helped me, not one bit), but that the meds are necessary to even think of beginning that. I cringe at the thought of giving my little girl medication.
Obviously, I know a great deal, more than I ever wanted to know, about panic and anxiety, but not when it involves my baby. My heart just cracked when I read that entry in her diary, then talked to her, the counselor, and my psych friend. And her sister knew about the whispering, even knows the part she “has to say out loud”, but thought nothing of it.
My daughter has seen my nightmarish experiences with doctors refusing to prescribe MY meds in the proper dosage, and she’s seen me suffer a great deal. I’ve explained to her, that mine is a special case, and over my dead body will I EVER let that happen to her, but she is refusing to be evaluated, and had the worst crying jag I’ve ever seen in a child both last night and today. She is frankly terrified- and does not want to take medication.
I don’t know why I’m on this board, as usual, but never thought I’d be on for this reason. I would appreciate so much ANY words of wisdom from you kind people. Advice would be good as well. Thank you.
_________________
~ Cathryn
Re: My Youngest Daughter and OCDs/Tourettes?
I really can’t answer your concerns about panic attacks but I don’t think you should jump to the conclusion that tics equal Torretes. My dd had a tic for about a year that eventually went away. Myself I get them when I am under a lot of stress. They go away. It sounds like your dd might be somewhat similar to me, except I don’t have panic attacks.
Beth
Re: My Youngest Daughter and OCDs/Tourettes?
Cathryn,
I have a son who has an anxiety disorder and absolutely, she MUST be taken to the doctor immediately. She does need medication for the panic attacks. These disorders certainly run in families. It is heartbreaking. Your daughter needs to understand, however, that just because you have had trouble getting your medication regulated, it does not mean she will.
I agree that this is none of the school’s business. It is a medical issue. A friend’s daughter was having anxiety attacks in middle school and was starting to miss school because she was afraid of having an attack. The doctor put her on medication and she has done fine ever since. Ironically, my son also told me he thought there was something wrong with him in middle school, but I unfortunately just assumed it was normal puberty stuff. So we waited much too long to get him help. I’d give anything to turn back the clock so we could have gotten him medication much earlier. There can be very serious consequences to not seeking help.
Janis
Re: My Youngest Daughter and OCDs/Tourettes?
I myself suffered from excessive shyness as a child — still have to fight it but have learned to grit my teeth and plow through. I’m also the gifted type. My lovely gifted daughter also had problems with shyness, although I pride myself that I gave her the support she needed so it was less debilitating for her than for me. The two, giftedness and shyness, may go together because the gifted child is excessively self-aware.
Definitely seek professional help right now. This is serious and won’t go away by itself.
My personal choice would be to see if there is any appropriate cognitive therapy first and meds as a last resort, but oyou have to do what works for you.
Re: My Youngest Daughter and OCDs/Tourettes?
I think cognitive behavior therapy is a great idea. But I think panic attacks need immediate help. And from what I have read, the best treatment is medication combined with cognitive behavior therapy.
Janis
panic
Cathryn,
My ds had OCD/tourettes and took medication, which soon stopped working. We ended up doing CBT without meds, and this worked very well. CBT can be very disturbing; meds are often recommended to take the edge off the CBT in the initial stages. But it’s certainly possible to do CBT without meds. If I had to do this over again I would go for CBT first and resort to meds second.
Also, have you checked for a strep connection?
Mariedc
Re: My Youngest Daughter and OCDs/Tourettes?
Hi Cathryn, I remember you and your daughters.
My son ( the LD one I come here to discuss) had an onset of motor tics 2 years ago (most eye blinking/rolling) As a result I have read alot about tourettes, OCD, anxiety etc. I recommend the following website if you want to read up on what parents of kids with TS are doing with diet and nutrition.
http://brain.hastypastry.net/forums/forumdisplay.php?s=f138b60a40e9fef6c8fe369a3dcd7441&f=253
Tourettes is just a diagnosis based on the length of motor and vocal tics a child has. It doesn’t reflect the severity of the problem (ie, a child could have very severe motor tics, but no vocal and therefore not get the dx of TS) . As you know TS and OCD are related . My son has no real tics anymore, but does have some compulsive behaviors.
Your daughter is exhbiting classic OCD behavior and of course anxiety /panic are part of the picture. I agree that consultation with a psychiatrist is appropriate, but I also know parents of OCD children who have had great success with CBT. I’m sure you’ll figure out what you need to do.
Thanx for the responses
Sitting here crying at the library. Thank you so much for all the helpful responses. Wish I had a computer at home, so I wouldn’t need to be making this scene in public. I guess you all know pretty much how I feel right now, so no need to go on about that. I never thought this would happen to her/us.
The eye-blinking tic goes way back, to when she was 6 years old. My older daughter and I tried to pinpoint when we first noticed it.
Special thanx to KarenN. I would like to get in touch with you as soon as I can find/make the time.
Re: My Youngest Daughter and OCDs/Tourettes?
Just re-read part of the thread. MariedC, are you referring to strep infection, like strep throat? Please excuse my ignorance.
She gets a strep infection at least once every winter. Hope I’m not sounding stupid right now, no time to google it up.
strep
Cathryn,
Scroll down on the Parent’s forum index (on the current page) and you will see a thread on “Cognitive Behavior Therapy for OCD~Please share experiences.” There is a lot of discussion there on strep. Also, there is more on a thread on the Teaching LD Students forum entitled “OCD Nose Picker, Constant.”
Let me know if you need more info.
Mariedc
PS
PS Yes, I am talking about strep as in strep throat. In some kids, the antibodies they produce to stave off the infection begin attacking an area of the brain that is responsible for movement and can result in ocd/tourette’s/adhd behavior.
Re: My Youngest Daughter and OCDs/Tourettes?
Cathryn, There is a connection between strep and tic /ocd onset and severity. Our neurologist said if my son’s tics flared up again he’d treat with antiobiotics - that’s how strongly he feels about this. Its called PANDAS. Worth discussing with your doctor. make sure you find someone knowledgable about OCD though, my pediatrician poo-poo’ed it.
Just realized you are in NY right? Our neurolgist is in White Plains, and they specialize in kids with learning, attention and tic disorders. (hello!)
Here is their web site. Maybe they can refer you to someone closer if their office is too far.
http://www.pediatricneurology.com/
losing it
I spoke with my father long distance on the phone a little while ago. He is angry with me for bringing my two daughters to New York a year and a half ago, from the small town my family lives in, and where I was born. My two daughters were born in New York City, and I spent most of my adult life here. They did, however, spend several years there. My father is in essence blaming “the big awful city”, and of course, me, for my little girl’s symptoms. He says, she doesn’t need a psychiatrist; just send her back there (population 25,000) and she’ll be just fine.
Please- somebody tell me this is nuts! I feel like I’m losing my mind here. My first reaction to all of this was guilt anyway; is it possible one’s surroundings can cause these kinds of symptoms in a child???
He also told me a cousin of mine, whom I haven’t seen or heard from/about in 20 years has Tourette Syndrome.
Re: My Youngest Daughter and OCDs/Tourettes?
Oh yes, I talked to her last night, and after some coercion, told me she does the whispered run-on gibberish sentence maybe 6 time a day. Two words of it she has to say out loud. She says she has tried to stop, but becomes very “uncomfortable”. The discomfort is relieved after she whispers over and over.
I’m waiting for a referral for a psyche for her from a friend.
Re: My Youngest Daughter and OCDs/Tourettes?
There are plenty of happy kids in NYC, so don’t worry about that! Plus, you will find some of the best medical resources there , should you need them.
Her whispering is an OCD behavior, which is related to Tourettes. So you have some family history there. But don’t worry - this is so treatable! She will be fine!
NYU I know has a good , well regarded, child study center. That’ s another possible place to find psychiatric care for her. hang in there!
Re: My Youngest Daughter and OCDs/Tourettes?
Yes, hang on to your sanity, your dad does not have the answer. You DO remember the stuff you were posting last year, don’t you??
Indeed the big city can be stressful — but so can the small town and all the tensions you were under there.
I like the idea of the university hospital for help.
Be careful with counsellors; I have a hilariously awful track record with counsellors who are a lot crazier than I am. Follow your gut feelings but do try to get her help.
Re: My Youngest Daughter and OCDs/Tourettes?
Cathryn, if you need help finding more resources email me privately. My son saw a psychiatrist for therapy for several years that I think is great, plus I have some friends in the business!
karen
Re: My Youngest Daughter and OCDs/Tourettes?
There’s more info about the strep/OCD connection at
http://intramural.nimh.nih.gov/pdn/web.htm
but it could be lots of things (I have *not* read, anywhere, of a “New York/OCD” connection though ;) Interesting theory…. yup… but if he wants you oiut of the city then it’s easy to see it as the Source of All Bad Things.)
Re: My Youngest Daughter and OCDs/Tourettes?
Thanx for the giggle, Sue… I can’t remember the last time I laughed, and it’s funny, but oh so true, he sees NYC as the Source of All bad Things.
Karen, I’m going to send you a short email in a little while. At the library of course, and short of time.
Re: My Youngest Daughter and OCDs/Tourettes?
sorry victoria, just saw your post. Yes, I do so remember the stuff I was posting last year— talk about a town full of crazy people, lol. Not really funny, but it’s laugh or cry, right?
Re: My Youngest Daughter and OCDs/Tourettes?
Well, I am sure you do remember, just a helpful reminder.
Laugh or cry — well, here’s my past two weeks:
Let’s see, I sold my house, the U-Haul truck was returned three hours late so we only got two loads instead of three, then my car (Ford Escort) started to go so I decided to use some of the very little money from the house (got my downpayment back basically) to replace it with a *good* used car. The salesman was cagey and the car was never there when my mechanic came to look, bad sign. I “bought” (actually a rental) a Dodge Neon while VW Golf I was supposed to be buying was supposed to be worked on. Finally mechanic caught it and said no, poor condition, overpriced. Returned Neon and got Escort back. This wasted a week my Escort was going going gone, but silly to repair it in its last week before scrapping. Still driving 50 to 150 miles a day to my students, five or six a day. Finally on the last run on the move I was in the car with young friend Max and we smelled a lot of burning rubber. Pumped up tire and avioided driving fast. Still driving to students every day, exam prep. Went to other used car dealer, bought a Hyundai, not as good as I wanted but looked OK. Drove it for one day, saw students, rented U-Haul again to get the rest of the junk out of the house. Back to the house, went to the restaurant for a break, on the way back from the restaurant with young friend Max in the car again, we smelled burning wires again. Parked it in front of the house to cool off while we loaded U-Haul. House buyers came over to take possession, and Mario truned and said “Madame, votre auto est prise en feu” which translates as “Ma’am, your car’s caught on filre.” Anne-Marie ran for the extinguisher, Mario who is very observant found my garden shovel, I popped the hood, and everyone dumped snow on the engine to put it out. Left that car in the yard, went to the apartment with three inthe U-Haul. Took the train back the next day, reclaimed the Escort, pumped up the tire, went to third dealer, bought an emergency Geo Metro just to keep working, $500. Geo had the world’s stiffest gearshift, took all my strength, but it ran. Saw students again, then went to register it, the licence office refused; seems somebody had played fast and loose with the paperwork and it had previously been scrapped and was illegal on the road. Got out of licence bureau at a very quick shuffle and took it straight back to the dealer. Reclaimed the Escort, pumped up the tire, drove back to second dealer, bought an older VW Golf, not as good as I wanted but runs fairly well. Drove to students for two more days. Big snowstorm, 16 inches in five hours nothing surprising in Montreal in December, but had to move the car for snowplowing. Roommate Nicolas, who does bodybuilding, very nicely shovelled it out, even before his own. Then it stalled. Meanwhile I was cooking my pre-Christmas Open House supper for twenty people, decided to let car sit in case I flooded it. The boys went out for more wine and told me it had been towed. I decided to stay put and drink wine. Lovely evening, a dozen people showed up despite the snowstorm, turkey and tourtiere and real cranberries and homemade mince pie and apple pie and banana fruitcake. Max hogged the conversation but he is fun. Somewhere in there while moving and unpacking and getting ready for the party, Yan the silent Pole opened one of the dresser drawers and found pill wrappings; I thought nothing of it until he commented on the name and said “I know this becasue I take it myself; it’s an antipsychotic” — well that explains a few things about the previous roommate’s mood swings, anyway. Next morning searched for the Golf (counting on my fingers which was the auto du jour), found it on the next block; with good French logic they had left it at a bus stop and then gave me a ticket including illegal parking. Got it registered, legally this time. Went to see more students. Went to the garage early for first come first serve and they didn’t. They refuse to work on the car unless I put in twice its value in repairs, apparently you have to be rich to drive in my neighbourhood. Went to more students. Took it to other garage where the tuned it up for only half its selling price. Went to more students. Today is the last school day before holidays and after I see more students, I am going to spend tomorrow in bed. Then on Saturday the boys are coming over and we are going to paint and unpack some more, and over Christmas I am going to try to get some skiing in; think I deserve it.
So, how has your life been going recently?
Re: My Youngest Daughter and OCDs/Tourettes?
LOL Victoria. That was more interesting and funny (although I sympathize) than anything I’ve seen on TV or in a magazine in a long time. Ever thought of being a writer?
Re: My Youngest Daughter and OCDs/Tourettes?
Esmom, thanks for the comment. I think I already am a writer. The problem now is getting somebody with actual money to pay to agree with us on that.
Re: My Youngest Daughter and OCDs/Tourettes?
I understand completely, victoria. Nobody will pay me to write either, lol.
Re: My Youngest Daughter and OCDs/Tourettes?
Victoria,
Is that from last year or this year? Oh, my is all I can say! I’ll remember that the next time I have a hard week!
Janis
Re: My Youngest Daughter and OCDs/Tourettes?
Janis, that was the past two weeks, from December 9 to today.
Today is four loads of laundry and unpacking the shopping I did but dumped and otherwise hanging out on the internet all day. I think I deserve it.
Tomorrow is furniture moving and house painting with the boys. Some time this week I change the address on all my bills and pay them, and get the ball joints replaced on the latest car du jour, and call the people who bought the house and see if they have the U-Haul refunds and other mail and if my plants are still alive and can be salvaged (we left them behind, including four palms that are old enough to drink, when the Hyundai lit itself on fire). And skiing on Christmas Day or Boxing Day if the weather and the striking ski hill operators cooperate. And invite my shy friend over for dinner now that roommate is on vacation.
After last week, this sounds pleasantly restful.
Re: My Youngest Daughter and OCDs/Tourettes?
MOving!! what fun!! And let’s toss in a few car fires and anti-psychotic meds just for fun…
I had a brief stay in SC when my car was stolen, my ankles devoured by voracious fleas, my upstairs neighbor shot a hole in my ceiling (we never found the bullet), woke up at 2 a.m. to a man standing in my room (who put my sock down and left after an odd conversation)… it was a bit later when the lady appeared at my door wanting to know if I was having an affair with her husband, since *my* outgoing credit card payment envelope was in their mailbox… with their return address label on it! (And it was five miles away or so… to the best of my knowledge I hadn’t been there…)
IT’s weird how this kind of stuff tends to happen in … what, powers of three? This week it’s just getting a plumber out ‘cause that laundry tub just *won’t* drain.
((hugs))
Cathryn, I’m so sorry to hear what your dd is going through. My dd also suffers from anxiety and panic attacks, as well as a few other things. Medication was essential for my dd to gain control of the anxiety so that she could learn skills to handle it. There are a lot of different things that can be helpful.
Getting tested for strep is a great idea, especially if she gets sick from it at least once a year. PANDAS has been associated with OCD.
Here are a couple of sites on Anxiety in children:
http://www.childanxiety.net/
http://www.childhoodanxietynetwork.org/
A friend of mine recommended a good book called Mind Over Mood by Dennis Greenberger and Christine Padesky. Its a CBT workbook that is often given by therapists to their patients for homework. I don’t know if it would help, but its something to look at.
Re: My Youngest Daughter and OCDs/Tourettes?
Catherine,
My son recently came down with OCD this summer. What exactly set it off I don’t know (strep, puberty, etc…), but from what I’ve come to learn it probably would have happened regardless. So don’t listen to others trying to put the blame on moving, or your parenting, or whatever! Plenty of kids move or go through difficult situations and don’t get OCD.
My suggestion to you is to get your daughter in cognitive behavioral therapy with a psychologist who specializes in treating OCD. If you get the right person you should see some results pretty quickly. With a good doctor the therapy is very effective.
At the first session my son was taught anxiety reducing exercises that he had to practice daily multiple times. From there he had to create an anxiety hierarchy and then start “attacking” anxiety provoking situations or responses one at a time beginning with those lower on the anxiety scale. He’s also being taught how to recognize how he feels (levels of stress according to a numbered system) and then work on reducing anxiety to these situations. It’s not an easy therapy. It requires daily exercises and can be very uncomfortable, but it’s abosolutely amazing.
Good luck to you! I know how devistating OCD can be. It’s probably one of the worst things I’ve had to deal with. Your daughter’s symptoms are not so unusual for OCD, and fortunately there is very effective therapy.
Another thing, if you do suspect PANDAS you may want to get your doctor to order a PANDAS blood panel through Immunosciences (800) 231-9197. There are other tests, but there seems to be some controversy over how to determine PANDAS. I’ve heard the Immunosicences test is very good.
laura
Laura,
Glad to hear the CBT is going well! The Immunosciences test is new to me. It’s been two years since I’ve had to deal with PANDAS—which I am very grateful for—and clearly things have moved forward medically. Here’s hoping even more is done to help parents deal with this devastating disorder.
Mariedc
Re: My Youngest Daughter and OCDs/Tourettes?
Marie,
I think this is one the BEST things I’ve ever done with my son (well, next to LMB), and I do have you and this forum to thank for that!!!!! We’re even using ERP for my son’s tactile defensiveness and it’s AWESOME!!!! In fact, my son is wearing a pair of jeans right now. This is the very first pair of jeans he has ever worn in his life!!! It’s really amazing. Not easy. He still avoids tactile sensations, but we’re definitely making progress I never believed was possible. We’ve been working on other things as well (and have much more to work on!) so CBT/ERP is just a way of life in our house. A daily exercise… pushing forward in very little steps….
It does seem that more people are aware of PANDAS. I still don’t have a definite answer with my son. His doctor didn’t want to run the PANDAS panel, but I’m looking at other things and may try to get one through another doctor. In the meantime I’m pleased with the therapy!
I just read this, and my heart sank:
http://www.focusas.com/Tourette’sSyndrome.html
My daughter has an eye-blinking “tic”, she’s had it for years, usually at the beginning of the schoolyear, then it gradually goes away. We always thought it was just nerves.