New to the group--Our story...very LONG

Claire - posted on 08/21/2012 ( 5 moms have responded )

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I have 2 boys (Wyatt age 8 1/2 and Travis age 6). Wyatt was diagnosed with TS in the summer following kindergarten, and he is starting 3rd grade on Tuesday. Wyatt tics have been around since pre-K, but we thought it was seasonal allergies which I suffer from. At that age, he tic was clearing his throat and snorting/sniffling a lot.

He is at a wonderful school with amazing teachers. Throughout kindergarten, his teacheres and I remained in close communication about his "quirks and habits". At this stage his only vocal tic had been the clearing his throat and his motor tics were things that could easily just look like habits. He was chewing his knuckle, then he would scratch his forehead in the same spot, then he would click his wrists.

His temperament/personality has always been very joyful, well liked, he has lots of friends with a variety of different interests. His whole life he has had an energy level that exhausts you just watching him--but is he is not "hyper".

Towards the end of K his vocal tics became more prevalent. He started making a beeping sound very faintly and very infrequently. no big deal, right? I could kiss his K teacher. She told me that one day (in private) she said to him. "Sometimes I do things like blink or sneeze. I cannot control it or stop it. I noticed you make a 'beep' noise sometimes. Can you control it?" He said "no, I can't." and that was the end of that. We ignored it. Then in May of K year he began repeating the sound "AHHH" like the vowel sound in cat. This would happen most of the day when he would initiate a conversation. This bothered him VERY much. He became down on himself and by end of June, one day, he said. "I HATE MYSELF. I'm so weird. I'm just a weird kid. Maybe I should die."

Whoa.

I had the wind knocked out of me. I took him to his pedi. She suggested a neurological evaluation. Wind knock out of me again...
Luckily, with the right connection, we got him into a fantastic doctor within the month. She diagnosed him and we were on our way.

First grade was very difficult. We had a great team of people working with him, but the tics were not the problem at all. It became clear that he was probably ADHD. He had a neuropsych eval in January of 1st grade and tadaa--ADHD. Yes, this precious, sweet lamb of a boy has yet another challenge in his life. We worked with him for the remainder of the year with hand tools, special chairs and other accomodations, and he ended up completing the year on a good not. Luckily (or not!) there are at least 10-12 kids in his class of 22 who also use focus tools, so this was not unusual to the kids.

We decided to start 2nd grade off with medication for the ADHD. We are exactly a year in and he has been on only 1 medication at a time but has been through: Strattera, Concerta, Adderall, Adderall XR, Focalin and now Intuniv. I have been determined to have him on only 1 medication...

NOW to my question. My husband and I realize that after a summer break from all medication, he should probably go back on Focalin for school. We started the Intuniv 10 days ago. I wanted to try it to see if it would help with his tics. They have been VERY high and loud vocal tics for the past month. He has only been on the 1mg dose. I want to up it, and his psychiatrist would like to try switching to Tenex. I realize these medications can take weeks to work. SO--we have come to the point where he will be on 2 medications at once-Focalin and Tenex (or Intuniv)...We just didn't plan enough before the restart of school to see if the Intuniv would help the tics.

I guess I don't have a question---I would just love any feedback, thought, input that you care to share. I am also happy to speak to our experience with these drugs should anyone have any questions.

So glad I found this site!

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Claire - posted on 09/11/2012

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Thanks Dana,

We are in a good place right now (knock on wood)! Wyatt takes 1mg of Tenex twice a day and Focalin, as well, for his ADHD. He is having an AMAZING time at school (finally!).



We also found out from our psychiatrist that he is going to be heading to San Diego for a Habit Reversal Therapy workshop. We are going to start the trial in October. If it helps Wyatt even just a little bit with the less "socially acceptable" tics, great. If not, we gave it a try.



Take Care,

Claire

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Terry Daniel - posted on 10/12/2015

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Ok stop and listen to what I'm about to tell you. Do you in fact love your son? I'm sure you do just like my mother love's me. When I was a child I was the child that never listened and teachers passed me just so I wouldn't end up in there class again. I'm not saying that's your son and I'm not saying I was incapable of learning. My parents never put me on medication for the same reason anyone would be concernd. negative or positive people would agree that they did the right thing? This is what your looking to get answers well listen to my story first before you jump to conclusions.

Starting at first grade through 9th grade my parents had me attend the smaller classes with extra help. Thinking that would be the best thing for me. I forgot to mention am diagnosed with ADD and ADHD. Anyways I was always just passing each class with grade low enough just to pass the class no Intrist in school not the never thought I had real friends because I lived in denial and never wanted to except I was who I am. Becides who wants to be friends with the kids in the in a special class? Moving on I was terrified to ever try drugs and was offered many times by all different kids. I never got pure pressured to taking them lucky me.(um no) I always would wonder how other kids would do so good on test when I thought they cheated or something. I had to struggle my ass off everyday and mental knowing i go to specical ed classes. At 15 yrs old I never thought I would make it in life yet alone school who will help me after I finish and that's if I do. Always having low self confidence never . I thought I was stupied a loser all the time. After I turned 18yes old i dropped out of school. Do you see where I'm going with this my parents did the right thing just like all the negative comments you have probably seen about adderall.
I speak for myself when i say that i wish i had more help (adderall)

I now have a son of my own, I see the same signs of me in him. I just told you how hard it was for me. Now the good I saw a doctor when I turned 20yrs old and asked him for help with my disorder because my parents didn't belive in drugs. Rember neither did I. I was terrified of them until he educated me on my illness and how parents commonly avoid children under the influence. However after taking the medication he prescribed me at first ( 1..15 ml daily) not enough so I went to ( 1..30ml + a 15 ml booster after lunch) it worked wonders keep reading. I went back to school and got my ged. That got me into college ( wow I wanted to go to school) that's amazing. I just graduated from college with a 4 year degree in law.
Back to my son and yours I'm not telling you when to start him, or if you decide to, start with do your own research with children that live with a disorder not the parents and hear it for your self first hand. Also i belive you need experience it for your self to underdtand it. first see what the same drug will do to you regardless of your decision and how it will help. Don't nock it until you have tried it i now like to belive. My son will be taking adderall as soon as my wife adds him to her insurance it's to expensive on mine but that's besides the point. Don't let him suffer because your scared of side the affects. * Let me make one point. * Diet soda, second hand smoke, unfiltered water, aluminum, a soda, to much tv, video games, cell phones, table salt,sugar, car fumes,dust, public restrooms and even just walking across the street. List goes on and on what I'm getting at is there's a risk at everyday life. But that's for you to decide not me.
Sincerly
Terry

Sara - posted on 09/21/2012

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You may want to look into doterra essential oils there are oils that when blended togehter could be very helpful they are natural so they are super safe and will not have crazy side affects like some of the meds they may put her on. The oils recommended are lavender, marjoram, clary sage, vetiver, Boswellian frankincense, ylang ylang, and fractionated coconut oil. If you would like to look into it go to www.mydoterra.com/sararenkert I hope this is helpful for you!

Dana - posted on 09/19/2012

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Claire, that's fantastic news. I'm glad things are looking brighter for you. Keep us posted on the habit reversal training. I'd love to hear how it worked.

Dana - posted on 09/11/2012

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Claire, as I was reading your post all I could think was "this sounds like my Matthew"! My son is now almost 12 and has had TS since he was 5. It is a roller coaster ride of emotions and also of co-morbid conditions. I understand when you say you are determined to only have him on one medication. Just keep an open mind. It took us a long time to find the right combination that works for him. I never imagined he would be on 3 medications and melatonin for sleep, but in the end he feels much better and he's happy, and that's what's important.

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