phone call with Neurologist in PA this morning

[Fixit]

I just got off the phone with the Neurologist we had seen in PA, as I am considering putting ds on Tenex or Chlonidine since my boy seems to be getting a bit worse and I can see him getting frustrated occasionally. I just want to be ready to roll when he’s had it. And I’m obviously not smart enough to figure this out. Anyway…as I sit here and try to type between my tears…..Oh help me……I asked the doc if this is the time things typically gets worse since he will be 10 and does it usually get better after 12. He said there is no such thing…it is what it is...it may get better it may get worse and there is no pattern!!! Is there no hope!!! I need a life boat over here.

 

The only thing that might make me feel better, is to chalk it up to my constant feeling these docs don’t know anything anyway, they were able to study a book better than you or I, and now get paid for that ability, as they would not look at diet as a cause/effect(unless it’s medicine) and no such thing as pandas. And I can’t find a pediatrician to think outside the box of what they are told, even if a parent keeps saying other wise. Can someone tell me I’m right on this last note, and the doc was wrong to say no pattern, so I don’t completely loose it!!!!

 

As I’m typing this trying to be calm I found this site

http://tourettenowwhat.tripod.com/so_what.htm

and below are some of the things that just helped me

 

**And even though I found this, please still tell me I’m right about the doctor phone call thing, please I really need some moral support**

If I’m wrong don’t tell me…I can’t take it right now!!!

 

Can all those hubands who say “don’t worry about it” call me right now!!!!

 

Some closing words about prognosis from the "real" experts:

"The individuals with TS who do the best, we believe, are: those who have been able to feel relatively good about themselves and remain close to their families; those who have the capacity for humor and for friendship; those who are less burdened by troubles with attention and behavior, particularly aggression; and those who have not had development derailed by medication. Children with relatively milder tics may become chronic patients and some with quite severe tics may develop into outgoing, happily married and successful young adults." Neuropsychiatric disorders of childhood: Tourette’s syndrome as a model, DJ Cohen, JF Leckman, and D Pauls, Acta Paediatr Suppl 422; 106-11, Scandinavian University Press, 1997.

and, from a recently-published Yale study:

"On average, the most severe period of tic severity occurred at 10.0 years of age. In eight cases (22%), the frequency and forcefulness of the tics reached a severe level during the worst-ever period such that functioning in school was impossible or in serious jeopardy. In almost every case this period was followed by a steady decline in tic severity. By 18 years of age nearly half of the cohort was virtually tic-free. The onset of puberty was not associated with either the timing or severity of tics.

 

... By early adulthood, tic severity may have declined sufficiently that a TS diagnosis may no longer be warranted.

 

... In our experience, families find comfort in the realization that tic severity will likely decline through adolescence. Such knowledge is likely to help families and pediatricians live with the tics and to delay the decision to begin psychotropic medications. Ages 8 through 12 are likely to be critical. If medications can be avoided through this period, the patient may have a good chance of never needing them. Although anti-tic medications are available, none are ideal. Over the longer term, starting medications may do more harm than good, given their potential adverse effects and the difficulties associated with medication withdrawal. This is particularly true of the standard neuroleptic agents such as haloperidol and pimozide." Course of tic severity in Tourette syndrome: The first two decades, James F Leckman; Heping Zhang; Amy Vitale; Fatima Lahnin; Et al, 07/01/98, Pediatrics, Page 14, Copyright UMI Company 1998. Copyright American Academy of Pediatrics Jul 1998.

Are there psychosocial and environmental components to the expression of the neurobiological condition of Tourette Syndrome?

Often based upon a multigenerational, genetic predisposition, the multifaceted symptoms of Tourette's syndrome unfold during the first years of life as an interaction between biological vulnerability and adverse environmental events. Tourette's Syndrome : Tics, Obsessions, Compulsions : Developmental Psychopathology and Clinical Care, by James F. Leckman, Donald J. Cohen, John Wiley & Sons; November 1998, p. vii.

[CSP]

((((((((((((fixit))))))))))))

 

I'm so sorry you are feeling like this, but I understand. I really did think my son would never stop screaming. Please try to picture this... it is true...

 

My son's vocals were something out of a horror movie. You would never believe how bad it was. He screamed all day every second. He did this for a year and I was paralized by it. I could do nothing for that first year. My husband was there telling me every day, "He will be fine," yet I could not bring myself to believe it. My head told me we were being punished for some sin we commited. After he turned 13 he went from screaming to really loud vocals. that lasted a year or longer. Last year during his 15th year until now at 16 he has been mild. So yes, it can get better after time. I still think my son will get even better after he fully gets in those last darn teeth.

 

My son plays baseball, takes martial arts, and is a volunteer fireman. He volunteers also at the martial arts school and helps the little kids after school with their homework, and plays games with them. They all love him and fight to be on his team... whatever they are playing. It warms my heart to see that so many people love my son, and it puts me in my place when I lose it with him from time to time.

 

One of the hardest things for me to do was... step aside and stop trying to control this. Please know I'm not saying you are doing anything wrong, I'm just telling you what I feel I did that did not help me. There is nothing wrong with the way you are greaving, you will find peace in your own time.

 

Remember you will not fine true comfort in this world, or from any human, (esp a Dr.) only God can heal your hurt. We are here to let you know, we know all to well the emotions you are going through, and to give you that hope... that yes... this can get better. If I had to thank God for the horrable nightmare I went through... it would be because I get a chance to talk to other moms and dads who are just trying to come to grips with this life changing ordeal. I know at some point I will be handed another blow... and I will have to pick up the pieces again.

 

Remember God is so close to you in your grief, he has counted every tear.

 

God Bless,

CP

[Chemar]

fixit

 

you have to do whatever is right for your child

 

if this is TS then acceptance is a major part of coping, and then just doing the best you can to make it as good as possible for him and you. If that means trying meds, it is an avenue you feel you need to explore, and we all hope it would work well for him

 

I totally disagree with the neuro saying that there isnt a pattern about kids past puberty showing improvement and that adults tend to have tics much subdued than teens. yes, some people do seem to have their tics persis into adulthood, but there is much documented to show tics often do get better after puberty!

 

that site you linked has a lot of helpful stuff, but the person who runs it has been quite insulting about Latitudes in the past. hopefully time has mellowed that attitude.

 

a very balanced site is www.tourettesyndrome.net

[guy123]

I've been on Clonidine for a bit over a year now and it has made a big difference for me.

 

If you're going to try it, start with a LOW DOSAGE.

 

One pill is 0.1mg. That's what they will probably try to start you at. I take 1/4 of that (I have to break the pill into quarters), and I weigh around 160 or so. I know some younger (and lighter weight) kids are on bigger doses, but there's no reason to start with a heavy dose. The doctor wanted to start me on a pill nightly, but I decided I was going to take 1/2 instead, but even that made me super tired throughout the day, and super dizzy every time I stood up, so I cut it down again to 1/4 pill, which still has all the benefits without the sleep side effects (in my case).

 

So right now I'm on 1/4 pill, which is 0.025mg. Don't get confused with the extra zero in there You don't want 0.25mg... that would be 2 and a half pills!

 

Start low. I noticed an effect within a few days, but if you're on like 1/4 pill and don't notice anything after a few weeks, then maybe bump it up to half a pill.

 

Or try Tenex, which is supposedly the same thing without the sleepy side effects.

 

I know I wrote this whole post talking about "you" when it's actually your child. Sorry, I'm tired (but it has nothing to do with Clonidine this time!).

[guy123]

considering putting ds on Tenex or Chlonidine

 

What does "DS" mean? I see "DS" and "DD" a lot, even on other forums, but I don't know what they mean.

[anne]

Hi Fixit,

I just wanted to let you know that our Neurologist told us that a high percentage of children totally outgrow or have a significant reduction of tics by early adulthood. Of course, when my son was your childs age I was in a total panic as well. My son is now 20 and doing great. If he tics at all it is really not noticeable. I never believed he would be basically tic free, but he is. Our son was the worst between 7-11. We did begin medication at that time, but I wish so much we had not done that. I just wanted to let you know that I was in your shoes at one time and can totally relate to how you feel. I want you to know, that yes they can and alot of times do see a reduction of tics with age.

Take care,

Anne

[anne]

I should have said in my prior post that he has not been on any medication for tics for about 4 years now.

 

Anne

[jdmom]

Our pediatric neurologist who specializes in "tics, tourettes and movement disorders" drew a bell curve showing tics typically starting around 5 years old, becoming more frequent up until before puberty then gradually declining back to where they started by the early 20's. So it's a bell curve that starts out steep then drops down over the years after puberty. I try to keep this in mind as much as possible. However, she also said that "there is no way to predict" how severe they may get or how long they will last or whether this curve will apply to my child. She did say that children who are doing well academically and have good social connections do better overall and these factors are actually more important than the the tics themselves. One last thing, when I asked her what the chances of my son having a normal life when he grows up, she said "Great!" absolutely wholeheartedly.

 

She also says that she does not prescribe medication for the parents, she only prescribes if the child is needing it. In other words, she doesn't give medication to a child just so the parents can feel better. There is no magic bullet but I do hope if my childs tics worsen or he starts feeling badly about them, the medicine will offer some relief. I really haven't read into all the details on the meds yet.

 

Hope this helps a bit.

[jdmom]

Hi Anne,

Thank you for your post, it was inspiring. If I could fast forward to the future and see my son as a young man with a happy normal life and not socially ostracized, I would wish for that and breath a deep sigh of relief. My son will be 9 next month and I worry myself to pieces about him every single day. In April it will be 3 years since this started and I know the anxiety is taking years off my life. I think his tics are mild/moderate, I'm really not sure exactly. Some days below the radar, other days obvious. Fortunately so far nothing that is disruptive in the classroom, etc. I understand we are going into the worst years and I wish I could just hold my breath until he's 20 and see him coming out just fine. Fortunately, my husband has a much more positive outlook and just keeps saying he is going to be fine.

Thanks for listening...

Sandy

[faith]

Fixit,

I totally relate to what you are going thru at the moment. you may know a little of my path here, but my son is going on 11, and yes, I think I can say this past year has been probably the 'worst' of times, as we have vocal sounds that can be the prominent tic at times. we've never done meds either, but I am taking things one day at a time and setting up my ducks just in case I decide its time.

 

I can say that we've heard the same as the others, that often, the tics start to decline in late adolescence. I know, yay, but for us that feels a long time away. but good to know it is certainly possible and that we are not hearing that this is often a permanent thing, no?

 

maybe what I can say to make you feel better is what you quoted about the kids tht seem to fare well, social, no other prominent issues, close to family, I think that is definitely correct. I worry everyday when my son walks thru the door after school and feel scared to death that this will be the day he tells me something not so good happened at school. but he walks in seemingly happy, "hi mom", and its just another day, praise the Lord. he is pretty social, and altho I think he has other issues, they seem to go under the radar with the other kids, for these days, everybody's got something. he's a typical boy, fun loving, cute, pain in the AZZ!

 

I've subjected him to alot of bloodwork and doctors visits lately, and we have had to start ocd therapy as well. but he's at the age where he is understanding that he has these issues, he doesn't like it, and I see times where the cracks start to show, but he bounces back. he is at an age where I want him to give him ways to cope with this and also know what the deal is and tht it may not be this way forever. a tender age for sure. Other kids have other problems for alot of other reasons, and they don't have tics.

 

don't know if I'm helping here, but basically, I guess what I'm saying is that things are not great here, but they are not outrageously bad either. Things have never been as bad as I once feared. If you have and are getting thru this particular time, chances are things will never be worse than they are right now. that's what I try to look at, saying to myself, well, we've gotten thru these past years, and we'll get thru the rest, and if its never as bad as it is right now, than that can only be a good thing. I want it to be better, for his sake, I don't want him to endure any loss of self esteem and lose hope for himself. he feels the challenges, but he generally a happy fun loving kid, has friends, has a family who loves him, does relatively well enough in school, he's a good looking boy, .... he'll be okay, whatever we have to do. Its probably hardest for us as parents, but we'll do it. You will do it. You can and you will. You're doing all the right things. Try to look at the positives and enjoy those things, your son is way more than his tics.................and each time I tell someone else that, I remind myself of the same.

 

blessings,

Faith

[faith]

Anne, thank you as well for your post as well, it helps to hear from those who hve been there...

 

and jdmom, I think I can echo what you are saying as well.

 

......now can somebody give cute guy123 a message board abbreviation lesson!!

 

 

 

[Fixit]

Thank you so much everyone!!!!

 

Cp inspiring as usual, i know its in God's hands ultimately and i don't know if i won't get hit by the perverbial bus...but "this" not knowing just hangs over and doesn't ever drift away. You said"I hate the thought that every time he makes noise it is just a reminder I have not stopped this for him. " If someone could just tell me he's going to have this thing till 16 and you'll be done i could "live"with that....i'm not living and its the total open endedness that's killing me. When you said your boys exploded at 12...did he not have any tics prior to that??? It seems so late to kick in like that. Was he sick or have shots just prior to that?

 

Chemar thanks for the ok on meds.... there is always such guilt....and especially since i currently feel like a failure and thanks for the heads up on the site. I guess i'm a little freaked too because i've got 2 younger boys who are fine and want to keep it that way.(and no strep, no head injuries, no allergies, and no spine/teeth problems like first son)

 

Cute guy123....ds is dear son and dd is dear daughter...doc said he would try 1/2 tenex at night and wanted to wait a month if we needed more to maybe add a 1/2 in the morning maybe.... and i told him i'm just getting ready...i didn't say go, yet....

i have a couple of more things i would like to try first and still persueing pandas/pitands as to ds' onsets and remissions

 

And if anyone remembers...i talked about onset with strep and allerigies....well the vaccine talk made me realize, his b-day is in feb...and he would get his shots and 4-6 weeks later would be early april when we would have an onset....now his allergies are reallly bad, but what about the vaccine trigger..(i don't know) does it matter anymore...did/does it all this just turn into ts

 

Anne...thanks so much for sharing, when you say "Our son was the worst between 7-11. We did begin medication at that time, but I wish so much we had not done that".....why...if it made it better..did it give him other problems???? I'd love to know....maybe that would give me the strength to keep going...is it that you think the outcome would be the same? But did it make it easier for your boy??

 

 

jdmom and faith i think we are all 1 year apart. my boy will be 10 soon..and jd you summed it up perfectly,

"If I could fast forward to the future and see my son as a young man with a happy normal life and not socially ostracized, I would wish for that and breath a deep sigh of relief. My son will be 9 next month and I worry myself to pieces about him every single day. In April it will be 3 years since this started and I know the anxiety is taking years off my life. I think his tics are mild/moderate, I'm really not sure exactly. Some days below the radar, other days obvious. Fortunately so far nothing that is disruptive in the classroom, etc. I understand we are going into the worst years and I wish I could just hold my breath until he's 20 and see him coming out just fine. Fortunately, my husband has a much more positive outlook and just keeps saying he is going to be fine. "

 

My hubby worries but says the same thing as yours,,,but when it's your own hubby its not as effective as someone else. I seriouly would like all the dads to get on one thread and say...this is so and so's dad "don't worry" and just all chime in

 

Faith, my trigger point is the same...when he gets off the bus..i'm looking for the new tic and some problem...I hate 3:45pm!

" I worry everyday when my son walks thru the door after school and feel scared to death that this will be the day he tells me something not so good happened at school. but he walks in seemingly happy, "hi mom", and its just another day, praise the Lord. he is pretty social, and altho I think he has other issues, they seem to go under the radar with the other kids, for these days, everybody's got something. he's a typical boy, fun loving, cute, pain in the AZZ!"

 

Well yesterday..ds came home and said"mom i was in PE running around and i was sweating and each time i wiped the sweat with my hands, my hands felt like they were being stung from a thousand bees"....we've also been dealing with some sort of raw, dry cracked, seboria type thing across his knuckles on his left hand since thanksgiving..he's right handed....THIS Kid always has something!!!!!Especilally with the skin!!!!! Dermatoligist help but they just give you something for the skin, which helps, but what is triggering all these skin reactions he gets??? Should i go to an immunologist...i tried to to to one on my own last summer but immunologists want a referral from a pedi and Pediatricians Slsukkdfhskh!!!!!! I am tired of being dismissed and tired of going to the doctors of any kind!!!!!

Just frlkononesidufslgnsa n s TIRED!!!!!!!

[CSP]

fixit,

 

I'm daily suprised at how much we all do think alike. I dreaded 3:45 too, and to make it worse I was always waiting to hear him come down the street. One could hear him from 5 houses down the road. I also could not wait until 9:00pm when he went to bed, it was the time I felt like I could think. If I woke up during the night I would begin to panic as I hated the mornings. I knew I would be hit with a blast of ear percing screams as soon as he opened his eyes. Yes, I hate the wax and wane, just when you feel like things are getting better... BAM... your rollercoaster starts again. I envy those who were able to let this roll off their backs at the beginning. Even tho. Fatih and I tease I really do not drink, I'm suprised I did not start, and I was very close to medicatiing myself.

You are so not alone. Believe me it does make me feel better that others have had a hard time, not because I wish that on anyone, just to let me know I'm only human.

 

 

My son had 2 shots 6 weeks before he exploded.

 

CP

[guy123]

......now can somebody give cute guy123 a message board abbreviation lesson!!

 

I see what you did there

 

I got a PM explaining DD, DS, and DH. I'd just never seen them before on any other forums so I wasn't sure what they meant

[CSP]

OOPS.... I thought it was darling not (dear)